Inside Assisted Living

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` Inside Assisted Living
The Search for Home

J. K E V I N E C K E R T
PAU L A C . C A R D E R
LESLIE A. MORGAN
ANN CHRISTINE FRANKOWSKI
E R I N G . R OT H

With contributions by
Sheryl Zimmerman
Lynn Keimig
Robert L. Rubinstein
John G. Schumacher
Debra Dobbs
Tommy B. Piggee, Jr.
and Leanne J. Clark

Foreword by Bill Thomas, M.D.

The Johns Hopkins University Press

Baltimore
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Library of Congress Cataloging-in-Publication Data

Inside assisted living : the search for home / J. Kevin Eckert ... [et al.] ; with contributions by
Sheryl Zimmerman ... [et al.] ; foreword by Bill Thomas.
p. ; cm.
Includes bibliographical references and index.
ISBN-13: 978-0-8018-9259-2 (hardcover : alk. paper)
ISBN-10: 0-8018-9259-7 (hardcover : alk. paper)
ISBN-13: 978-0-8018-9260-8 (pbk. : alk. paper)
ISBN-10: 0-8018-9260-0 (pbk. : alk. paper)
1. Congregate housing—United States. 2. Long-term care facilities—United
States. 3. Patients—United States—Interviews. I. Eckert, J. Kevin.
[DNLM: 1. Assisted Living Facilities—United States. 2. Patients—United States—
Interview. 3. Homes for the Aged—United States. WT 27 AA1 I59 2009]
HV1454.2.U6I56 2009
362.6⬘10973—dc22 2008037843

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 Contents

List of Contributors vii

Foreword, by Bill Thomas, M.D. ix
Preface xiii

1 Introduction 1
2 Miss Helen at Valley Glen Home 15
3 Opal at Franciscan House 36
4 Karen at Huntington Inn 53
5 Mrs. Koehler at Middlebury Manor 75
6 Dr. Catherine at the Chesapeake 98
7 Mr. Sidney at Laurel Ridge 124
8 Everyday Life in Assisted Living 149
9 Aging in Places 167
10 The Reality and the Promise of Assisted Living 195

Appendix: Technical Description of the Research Project 213

Notes 229
References 233
Index 239
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 Contributors

paula c. carder, ph.d., assistant professor, Institute on Aging, School

of Community Health, Portland State University, Portland, Oregon

leanne j. clark, m.g.s., ph.d. candidate, graduate research assistant,

Center for Aging Studies, The Erickson School, University of Mary-
land, Baltimore County, Baltimore, Maryland

debra dobbs, ph.d., assistant professor, School of Aging Studies, Uni-

versity of South Florida, Tampa, Florida

j. kevin eckert, ph.d., director, Center for Aging Studies at the Erick-
son School and Department of Sociology and Anthropology, Uni-
versity of Maryland, Baltimore County, Baltimore, Maryland

ann christine frankowski, ph.d., senior research associate, Center

for Aging Studies, The Erickson School; adjunct assistant professor,
Department of Sociology and Anthropology, University of Mary-
land, Baltimore County, Baltimore, Maryland

lynn keimig, m.h.a., Ph.D. candidate, ethnographer and project coor-

dinator, Center for Aging Studies, The Erickson School, University
of Maryland, Baltimore County, Baltimore, Maryland

leslie a. morgan, ph.d., professor, Department of Sociology and

Anthropology, University of Maryland, Baltimore County, Balti-
more, Maryland

vii
tommy b. piggee, jr., m.a., ches, Ph.D. candidate in gerontology,
University of Maryland, Baltimore County, Baltimore, Maryland

erin g. roth, m.a., senior research analyst/ethnographer, Center for

Aging Studies, The Erickson School, University of Maryland, Balti-
more County, Baltimore, Maryland

robert l. rubinstein, ph.d., professor, Department of Sociology and

Anthropology, University of Maryland, Baltimore County, Balti-
more, Maryland

john g. schumacher, ph.d., associate professor, Department of Soci-

ology and Anthropology; associate director, Center for Aging Stud-
ies, The Erickson School, University of Maryland, Baltimore
County, Baltimore, Maryland

sheryl zimmerman, ph.d., professor and director of aging research,

School of Social Work; co-director, UNC Interdisciplinary Center
for Aging Research; co-director, Program on Aging, Disability and
Long-Term Care, Cecil F. Sheps Center for Health Service Research,
University of North Carolina at Chapel Hill, Chapel Hill, North
Carolina

viii CO N T R I B U TO R S
 Foreword

The use of “voice” in the written language has been found as early as
1290, but voices themselves are ancient, as old as humanity itself. Voices
are the carriers of culture; they contain our stories, transmit our beliefs,
and communicate our emotions. But voices alone are not enough. To in-
fluence the wider world, voices must be paired with listeners.
The power of listening pulses between these covers. The act of careful,
attentive listening grants this book its scope and power. As I immersed
myself in its pages, I was returned to the earliest days of my career in the
field of aging. In the early 1990s, I was a young physician and my heart
was set on a career in emergency medicine. Then, as so often happens in
the field of aging, fate intervened. I was offered a part-time position as the
medical director of a small, rural, skilled nursing facility, and I went to
work caring for the elders who lived there.
I soon understood that something was terribly wrong. Even though
my patients were receiving the best, most up-to-date medical treatment
available, they withered and died. They were being fed, clothed, bathed,
and entertained, and their care was being delivered in a state-of-the-art
facility, but they did not have lives worth living. I pored over my text-
books and journals but found no answers there. Searching for under-
standing, I began to go to the nursing home when I was off duty. I would
sit quietly with a black-and-white speckled composition notebook on my
lap. I spent hours there. Listening.
It was there that I first heard the voices of the elders.
I was launched, accidentally, on my career as an amateur ethnogra-
pher, filling many notebooks with observations that shaped the course of
my career. Fortunately, superbly trained, expert professionals have the

ix
capacity to go much deeper, to see more and explain more than I could
dream of doing. They plumb the social worlds within which people move,
laying bare the behaviors, values, and meanings that define human cul-
tures. This singular capacity forms the core strength of Inside Assisted
Living. This work does not dabble in easy answers or offer false certain-
ties. Rather, it propels the reader toward new questions and new under-
standings. Here we explore the balance between minute, everyday details
and the social structures that elders and those who care for elders share.
The best example of this virtue is the extended examination of the
concept of “aging in place” in these pages. What do these words mean
to elders? What does the concept imply to professionals? What do fam-
ily members think when they hear the words? It turns out that “aging in
place” is a complex and densely irregular cultural construct. For some, it
is a literal “till death do us part” injunction that requires an elder to re-
main in his or her own dwelling, no matter what. Others find in the term a
more flexible ideal that allows for “home-making” wherever an elder may
be living. The authors offer the reader a delightful intellectual voyage.
Home
Heart
Belonging
Welcoming
Community
Celebration
Memory
Connection
and Disconnection
Warmth
Tenderness
Fear
Guilt
Forgiveness
Hope
The field of aging services is being remade, all around us, every day.
A system that once required older people to surrender autonomy in
exchange for assistance is now finding its way along a new path. We are
making a world in which elders can expect that those who come to their

x FOREWORD
aid will adapt their practices, change their attitudes, and alter their struc-
tures, schedules, and routines to join with elders as they are.
This is new.
This context allows the voices of our elders to gain new importance.
They can lead us, if we will take the time to listen. They can inspire us, if
we are willing to be moved by their words. We must listen not so that
elders can command our obedience but so that they might lead us to the
new questions that we should be asking. Within the deep nature of human
elderhood, influence has always been more precious than power.
This book, like all of the best qualitative research, does not aim for
“definitive answers” but rather challenges the reader’s assumptions with
carefully developed personal narratives. Here we find the voices that can
take us inside assisted living. Listen as they whisper to us the news of a
world waiting to be born.
Bill Thomas, M.D.
Professor of Aging Studies
Erickson School of Aging Studies
University of Maryland, Baltimore County

FOREWORD xi
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 Preface

The goal of this book is to provide readers with an insider’s perspective

on assisted living through the experiences of those who reside and work
there.
Inside Assisted Living is composed of ten chapters and a technical
appendix. Chapter 1 sets out the purpose of the book, explains the study
design, and discusses the emergence of assisted living as an increasingly
popular supportive living alternative for older adults. Chapters 2 through
7 focus on each of six assisted living settings we studied in Maryland,
with entry provided through the eyes of a selected resident. Interviews
and observations from other individuals within and associated with
each provide additional details. This strategy provides a “mini-ethnogra-
phy” of each place that addresses topics such as how it feels to live in a
group setting, the occurrence of age-related changes over time and the
employees’ responses to those changes, how the setting functions as a
business, and firsthand accounts of what it is like to live and work in
assisted living. Each of these chapters also points to key findings of our
research about the assisted living sector today—including its achieve-
ments and challenges.
During the course of this five-year study, we completed 379 ethno-
graphic interviews with residents, their families, and their caregivers in
addition to several thousand hours of participant observation in the se-
lected facilities, and attended monthly public meetings on regulatory is-
sues. (More details on how the project was conducted are provided in the
Appendix.) The words of the people we spoke to provide a richly detailed
story that informs us about the intricate nature of these places.
The following paragraphs provide a brief introduction to the indi-

xiii
viduals and settings we studied. We developed pseudonyms for each of
the assisted living facilities that reflect the culture of each place. Pseudo-
nyms are also used for all persons interviewed. Some of the settings had
a casual climate in which everyone was referred to by first name; others
were more formal. Our selection of names reflects this. In addition, we
altered certain details of both the assisted living settings and the persons
interviewed to protect the identities of those involved.
Chapter 2 features Miss Helen at Valley Glen Home, a single-family
residence originally converted into a group home for up to eight residents.
Miss Helen, disabled by a stroke that left her unable to speak, walk, or
assist with any of her own personal care needs, had lived at Valley Glen
for two years when we met her, and she was not the only resident with
this level of impairment cared for by Rani, the owner-operator.
The next chapter describes Opal, a woman with mild cognitive
impairment who finds that living in a small home is the “most boring
life you can imagine.” Franciscan House, like Valley Glen, is a converted
single-family residence licensed as an assisted living facility. Although
Opal sometimes wonders if she should have moved into a larger setting
with more social activities, she had been a resident for two years when we
met her and still lived there at a follow-up three years later.
Karen introduces us to life in Huntington Inn in Chapter 4. Karen had
multiple chronic conditions that limited her mobility but not her mind;
she was engaged in the daily events at this medium-sized residence and
provided insight not only about her own experience, but also about other
residents and the employees. Mr. Hill, the owner-operator of Huntington
Inn, worked as a nursing home administrator before getting into the
assisted living business, and he shares his views on how the industry has
changed and will continue to change in the future.
Mrs. Koehler’s story in Chapter 5 acquaints us with Middlebury
Manor, a family-owned and decidedly middle-class assisted living resi-
dence attached to a nursing home. After a dramatic and devastating fall
down the stairs in her home, Mrs. Koehler chose Middlebury Manor, in
part because of her familiarity with the owners. As the story unfolds, Mrs.
Koehler’s time there hangs in the balance as her chronic health issues
require frequent stays in the hospital and nursing home. Safety, liability,
and the desire to “age in place” come into play as the administrators, Mrs.
Koehler’s daughter, and Mrs. Koehler struggle with these decisions.

xiv P R E FA C E
 Chapter 6 details the story of Dr. Catherine, an educated woman who
was well aware of her dementia diagnosis at the time we met her, soon
after her daughter insisted that she move into assisted living. The daughter
decided on the Chesapeake for its ambiance, cleanliness, reputation, pet
policy (her mother had a small dog), and location (near a long-time friend
of Dr. Catherine). This chapter provides insight into the processes and
decisions involved in making two transitions, an initial one into assisted
living and then a second to a separate dementia care unit within the
building.
In Chapter 7, Mr. Sidney introduces us to life at Laurel Ridge, a two-
level assisted living residence in a heavily trafficked suburban community
just outside a large East Coast city. After a hospital stay, Mr. Sidney agreed
to enter Laurel Ridge at the prompting of his physician and his late wife’s
niece, who oversees his care. He holds a balanced view of life in his new
home, appreciating having someone to manage his medications, regu-
lar meals, and people to talk with, while showing surprise at the frailty
and discordant behavior of other residents and disdain for management
decisions.
The final three chapters draw on our findings from all six facilities
and many residents’ stories to address some cross-cutting themes. Chapter
8 describes everyday life in assisted living, focusing primarily on the resi-
dents’ perspective. The next chapter focuses on stability and change over
time, including the critical aging-in-place philosophy and whether it is
realized in assisted living facilities. Chapter 10 focuses on eight core reali-
ties of assisted living today as well as promises and challenges for the
future. A technical appendix provides a detailed description of the research
design and methods used in the ethnographic study.
As we launch into our exploration of life inside assisted living, we
thank the residents, families, and staff members who willingly spoke with
us over the course of the study. Without their time and interest, there
would be no story to tell. We also thank the National Institute on Aging
(NIA), one of the National Institutes of Health, for providing the funding
that enabled us to conduct the study “Transitions in Assisted Living:
Socio-cultural Aspects” (RO1 AG019345). We hope that our readers will
find this book helpful in understanding assisted living as it exists today.

P R E FA C E xv
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Inside Assisted Living
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 ONE

` Introduction

You know, that was my impression—that this is the last place. And I
see these people lined up in wheelchairs in these homes. And I thought,
well, there they sit, just waiting to die. So that was my idea of it.
And then when my son thought that I had to make a change, I
thought, well, I’ll try it. He brought me over here and we looked at it
and I just, you know, came along with it. I wasn’t enthusiastic, but I
just came along with it. And I made up my mind that I was here for a
reason. So I tried to look at all the good parts. And I just settled in
until it’s become my home. And I’m very, very happy here.
The best thing about living here is that I don’t have to cook. I
don’t miss anything. I feel like, if I was in my apartment [before mov-
ing into assisted living], I’m alone, you know, and I have to go out
looking for excitement or doing things. Here I can choose.
—resident of the chesapeake assisted living

S ome of us are familiar with long-term care and with assisted living
as a long-term care option. But for a lot of people, questions and
concerns are many. For instance, what choices do older people have when
they require daily assistance to cook, dress, bathe, or take medications?
Who monitors their chronic medical conditions and/or protects them
from risks associated with cognitive impairment? How do we as a society
respond to older persons who can no longer live independently in the
community, but don’t need (or want) to move into a nursing facility?
Increasingly, the answer to these questions is “assisted living.”
The purpose of this book is to introduce readers to life in assisted
living from the perspectives of individuals who reside or work in one of
six actual settings in Maryland. We believe that this type of supportive
housing cannot be fully understood unless we go inside different assisted

1
living residences to learn about day-to-day life directly from those who
live or work there. By telling their stories and relating those stories to the
larger arena of long-term care, we examine some key dilemmas facing
those who live in, work in, and regulate such settings. Moreover, learning
more about assisted living benefits all of us as we think about the alterna-
tives available to our families and our future selves.
Over the past decade, the question of what assisted living is, should
be, or should not be has consumed the time of many gerontologists and
long-term care experts. These individuals have weighed in on this ques-
tion as they work to develop sensible regulations and engage in influential
research. Still, at both the state and the national levels, people express
uncertainty and dissatisfaction, as well as varying levels of optimism,
when discussing assisted living. In this book, we let the real experts—
residents, their families, and employees—tell about assisted living in their
own words.
How these people experience life and work inside assisted living is
important, because their stories educate those of us who are or will some-
day be considering such a move for ourselves or a family member. But
beyond that, their stories serve to inform current practice and policy-
making by providing a more complete understanding of what assisted
living currently is and how we would like it to be. Assisted living facilities
are complex places, made so by the intersection of individual lives, po-
litical and economic factors, social and cultural beliefs, and conflicting
expectations.
When we set out to study the nature of daily life inside six diverse
settings, we did not directly ask older persons to define “assisted living.”
Instead, we let them tell us their stories: how and why they came to live
in an assisted living residence; what they do on a daily basis; about their
neighbors, friends, and enemies, as well as the employees they preferred
and the ones to avoid; and their opinions about the many spoken and
unspoken rules and restrictions. They also shared their fears and disap-
pointments as well as surprise at how nice some settings could be com-
pared with the negative image of a nursing home so many had held in their
minds.

2 INSIDE ASSISTED LIVING

 Real Places, Real Lives: What Is Assisted Living?

Within the six settings we studied are residents, their engaged family
members, and the staff, who are collectively active in composing the mun-
dane and exceptional events that constitute the reality of daily life. By
talking to these groups and observing their interactions and routines, we
present an authentic view of how life in assisted living unfolds in all its
complexity and diversity.
Over the past decade, assisted living has become one of the most
popular and familiar alternatives for care of older adults who need daily
assistance or supervision or who find it difficult to manage in their own
homes. Its popularity is demonstrated by the expanding numbers of resi-
dents and settings (Mollica, Johnson-Lamarche, and O’Keeffe 2005) as
well as growing state interest in regulation (Bruce 2006; Carlson 2005).
In the media, assisted living is variously portrayed as a retirement option
for wealthy persons who need only minimal support services, as a busi-
ness that reduces seniors to poverty before unceremoniously discharging
them to nursing facilities, or as the new (but unregulated) addition to the
nursing home scene.
For example, an investigation by Consumer Reports revealed that
“finding a good, safe, and affordable facility has . . . become problematic
for seniors and their families. There’s a lot to consider: the setting, the
cost, the array of services, the condition of the other residents, the sol-
vency of the company, not to mention the rights of residents to stay, or the
necessity for them to go, if their condition deteriorates.” The report espe-
cially criticized the “hodgepodge” of state regulations that result in a wide
range of settings that fall under the label “assisted living” (Consumer
Reports 2005). A more recent CBS Evening News report focused on the
negative aspects and called for more stringent regulations that impose
sanctions and accountability for poor care (CBS Evening News 2006).
But assisted living has also been presented in a more positive light, as
the following suggests: “Reinvent the nursing home and the result might
look a lot like assisted living. Instead of the shared rooms of a nursing
home, residents live in private apartments, usually with kitchenettes and
bathrooms. There’s staff available to help residents eat, bathe, and dress”
(Shapiro 2001). In practice, assisted living can be any or all of the above.

INTRODUCTION 3
 While there are varying formal definitions, in practice assisted living
is the large middle ground between receiving care at home, often with the
assistance of family and/or professionals, and admission to a nursing home,
a setting of last resort according to most public surveys. Often older per-
sons move into an assisted living residence as an alternative to home care
that doesn’t provide enough support (e.g., does not have the ability to
respond to unscheduled needs) or as an alternative to a nursing facility
that, for lack of a better description, provides too much support (e.g.,
provides assistance in bathing or taking medications whether the indi-
vidual requires help or not). Home health care is defined as care “provided
in the place of residence for the purpose of promoting, maintaining, or
restoring health in maximizing the level of independence while minimiz-
ing the effects of disability and illness, including terminal illness” (NCHS
2007). Services provided in home health care can include skilled nursing
care, the availability of special-needs equipment, administration of medi-
cations, and personal, hospice, and psychosocial care. The same set of
services might also be provided in nursing facilities and assisted living resi-
dences, though states place limits on the level of services assisted living
may provide; for example, ongoing skilled nursing care cannot be pro-
vided. Nationally, more people needing care reside in nursing homes (1.6
million), with 1.4 million receiving home care (NCHS 2007) and about 1
million in assisted living facilities (NCAL 2007). It is worth noting that
the number of nursing home residents has remained stable over the past
20 years in spite of the increasing population of older persons (Redfoot
2005). Of course, assisted living cannot take full credit for this decline in
the use of nursing facilities, but its growth has been and continues to be a
major factor.1
During our research, residents and their families, when describing
their need for long-term care services, frequently discussed their desire for
something other than a nursing facility. For example, the son of one
assisted living resident we interviewed said: “When my grandparents were
in a nursing home, I wouldn’t go. I went a couple of times and I couldn’t
stand . . . the smell.” We heard similar accounts from other family mem-
bers and residents, some of whom had not been in a nursing home for
many years. Similarly, the assisted living administrators and employees
we interviewed often defined assisted living by comparing it with a nurs-
ing home, explaining that the former was preferable to the latter. Of

4 INSIDE ASSISTED LIVING

course, nursing home operators and advocates might rightly take issue
with this comparison; the point here is that many people perceive nursing
homes to be an undesirable form of long-term care.
In fact, assisted living as a distinct type of senior housing is, in large
part, the result of three individuals’ dissatisfaction with nursing homes.
Stimulated by long-term care experiences in their own families, Keren
Brown Wilson in Oregon and Paul and Teresa Klaassen in Virginia each
adopted philosophical principles for housing with services distinctly in
contrast to those of nursing homes and in-home nursing services (Wilson
2007). These principles, developed in the 1980s, included respect for resi-
dent independence, choice, and privacy in an apartment-style building
designed to be “homelike” and noninstitutional. The regulatory responses
of the two states differed. Oregon allowed assisted living providers to
deliver a level of service comparable to what used to be called “intermedi-
ate” care in nursing homes; that is, assisted living could provide all but
ongoing 24-hour skilled nursing care. Affordability for low- to moderate-
income persons was a central tenet of the initial demonstration in that
state.2 In the 1990s, some Oregon policymakers and providers argued that
the promise of assisted living should be to “age in place,” by which they
meant that an individual should be able to remain in the assisted living
residence as long as the person’s medical condition did not require full-
time skilled nursing care.
In contrast, Virginia developed fairly restrictive criteria regarding the
degree of physical or cognitive impairment acceptable for newly admitted
assisted living residents, but that state’s regulations allowed residents to
arrange third-party services beyond meals, housekeeping, and basic assis-
tance with activities of daily living. Thus, remaining in the assisted living
facility as health and functioning changed was possible but depended on
the resident’s ability to locate and pay for the necessary additional ser-
vices, as well as the management’s willingness to retain people who needed
more care.
While Oregon and Virginia might get the credit for jump-starting the
growth of an assisted living industry, throughout the 1990s other states
and private companies quickly followed their lead. The popular definition
to emerge during this time asserted that assisted living settings operate
under a “social model” of care, including a homelike living environment,
with respect for residents’ privacy, choices, independence, dignity, and in-

INTRODUCTION 5
dividuality (Wilson 1990; Kane and Wilson 2001). While perhaps chal-
lenging to realize in practice, these social model principles, developed in
contrast to the medical model of the nursing home, were integral to the
emergence and growth of assisted living. From the beginning, Oregon’s
regulations defined assisted living in contrast to its long-term care sister,
the nursing home, as text from a 1989 state policy paper indicates: “We
are developing educational modules [to explain] how the social model is
different from the medical model. Assisted Living demonstrates this dif-
ference in physical structure and support services for the residents. The
outcome of the residents is better: they have more independence, more
choices in living, more dignity, and they live in a homelike environment
that continuously treats them with respect and keeps their privacy in
mind” (SDSD 1989, 5).
That Oregon policy paper goes on to explain that the social model is
enacted via the “physical structure” by providing private apartments with
bathrooms, kitchenettes, locking doors, and individual temperature con-
trols.3 Support services were to be individualized, based on each resident’s
personal needs and preferences. For example, a resident should have a
choice of whether or not to accept employee assistance to take a shower,
and residents would be permitted to direct their own care.
A more recent study of Oregon’s assisted living program describes the
various efforts that policymakers and operators made to establish this
new form of long-term care as distinct from nursing homes (Carder
2002a). The phrase “social model” was consistently attributed to assisted
living by policymakers, while “medical model” was used to describe nurs-
ing homes and hospitals. For example, the social model would address a
resident’s medical diagnosis as only one of several needs, with similar
importance given to the individual’s psychosocial needs, personal prefer-
ences, and financial needs. In contrast, the medical model focuses primar-
ily on the person’s medical diagnosis and treatment. Oregon’s assisted
living regulations in particular defined six philosophical elements of the
social model: a homelike environment and support of residents’ indepen-
dence, privacy, dignity, individuality, and choice. Assisted living operators
also employ a new vocabulary; they intentionally refer to resident (instead
of patient), apartment (instead of room or bed), and residence or com-
munity (instead of facility) to distinguish themselves from nursing homes
(Carder 2002a, 2002b). Today, most states use some version of the social

6 INSIDE ASSISTED LIVING

model in their regulatory definition (Mollica, Johnson-Lamarche, and
O’Keeffe 2005), although the extent to which this philosophy is realized
in practice remains an open question.
In addition to the social model, many providers and advocates identi-
fied “aging in place” as both a goal and a probable outcome of the new
assisted living sector. The phrase was used by demographers to describe
the finding, confirmed by surveys and geographic data (Prisuta, Barrett,
and Evans 2006) that older persons desired to age where they have lived;
they preferred not to move, especially to a nursing home. Thus, a move
into assisted living might be the last move an older person would make.
Although Oregon regulations did not define aging in place, it continues
to be a hot topic both there and in national policy discussions. We return
to this topic in Chapter 9.
Another key issue in this research and also nationally concerns the
economics of assisted living. Cost issues affect the older persons and their
families who are paying for services, as well as assisted living operators.
By and large, assisted living caters to a private-pay market. Forty-one
states now use public resources to subsidize the cost of assisted living
services (Mollica, Johnson-Lamarche, and O’Keeffe 2005), but these sub-
sidies are available only to low-income individuals who need nursing-
home-level care. In addition, states limit the number of subsidies avail-
able, the scope of services, and reimbursement amounts to providers,
resulting in a gap between demand and availability (Justice and Heestand
2003; O’Keeffe and Wiener 2004). Projections show that the need for
affordable assisted living will increase significantly with the aging of the
population (Golant 2005/06).
Many assisted living providers are hesitant to accept publicly subsi-
dized clients because reimbursement rates do not cover their operational
costs. The expenses of operating a facility, including liability insurance,
employee salaries and benefits, building maintenance, and the record-
keeping demanded by regulations, are often mentioned by assisted living
owner-operators as reasons for accepting only those who have the re-
sources to pay privately. However, not all operators can choose to accept
only private-pay residents; they would rather have a subsidized client
paying a lower rate than an empty unit.
Early in its development, assisted living was viewed by many as a
remedy for the concerns that people expressed about nursing homes, espe-

INTRODUCTION 7
cially the institutional- and hospital-like environment and the lack of pri-
vacy, dignity, and independence afforded to people living there. For ex-
ample, in 1993 Donna Shalala, then secretary of Health and Human
Services, wrote that “assisted living is an example of the good news in
aging. States, local governments, private corporations, and the frail elderly
themselves, have creatively met the need for care at reasonable cost while
maintaining the individual’s dignity and independence” (Shalala 1993).
During the initial period of assisted living growth (the 1980s into the
1990s), some states struggled to keep up with the private industry’s
momentum to develop more residences. Nursing home apologists argued
that assisted living was an “end run” around the stringent regulations to
which nursing homes were held accountable. Topics of debate then, as
now, included whether to require licensed nurses in assisted living facili-
ties, whether and how to define and monitor this new form of long-term
care, whether and at what level to set staffing ratios, and what range of
medical services would be permitted. During this time, national trade and
professional groups formed to advocate for the social model, or at least
to prevent a medical model to define, regulate, and monitor the new as-
sisted living type of housing and care.
Many states reorganized their existing residential care programs un-
der the heading of “assisted living,” including board-and-care and group
homes that housed anywhere from two to more than one hundred per-
sons. Other states reserved the “assisted living” title for the new settings
specifically built for this purpose. The decision to combine a wide range
of diverse settings and programs under a single label confused the public
as well as investors, government agencies, and senior housing operators.
Advocates and policymakers remain divided on whether a national defini-
tion and regulatory framework, rather than the current state-based
approach, should be implemented.
The honeymoon period for assisted living was short lived, as reports
of substandard care and consumers’ unmet expectations quickly attracted
media attention. Studies conducted in the mid- to late 1990s revealed a
lack of clarity regarding the definition and boundaries of assisted living
(Hawes et al. 1995), a problem that persists today as states, advocates,
and providers debate what it is or should be (ALW 2003; Carlson 2005;
Kane and Wilson 2001). Over time, the idea of aging in place came into
question, as residents with growing needs for personal care or medical

8 INSIDE ASSISTED LIVING

services were moved out of assisted living homes and into nursing homes
or residential care settings. A public report criticized the adequacy of state
licensure to protect consumers (GAO 1999). Wilson noted that “in less
than ten years assisted living had gone from poster child to long-term
care’s bad boy” (2007).
Although proponents of assisted living originally set out to distin-
guish this new sector from nursing homes, today it is sometimes described
as “a nursing home in denial” or as “the nursing home of twenty years
ago.” Increasingly these descriptions may be appropriate as the number
and severity of physical and cognitive limitations among residents increase
over time (Golant 2008). Recent studies indicate that a large percentage
of assisted living residents have some form or level of cognitive impair-
ment (Rosenblatt et al. 2004; Morgan, Gruber-Baldini, and Magaziner
2001; Zimmerman et al. 2005a). Although we discuss these issues in more
detail in the following chapters, a brief review of historical threads pro-
vides a background and a framework for understanding assisted living as
it exists today.

How New Is the Concept of Assisted Living?

Is assisted living truly a “new” alternative, or is it simply a spin on an old

standard? Assisted living developed from a wide range of social and cul-
tural forces, not the least of which was consumer dissatisfaction with
nursing homes. While the contemporary nursing home is a relative new-
comer to U.S. society, communities have always needed to provide for
individuals or groups not able to live independently. Throughout history,
individuals who lacked either personal or financial resources relied on a
patchwork of local charitable organizations. For individuals without fam-
ily or strong ties to an ethnic or religious group, the only alternative was
the public poorhouse or a religious or service organization almshouse.
After the enactment of Social Security in 1935, “a whole new era in
entrepreneurial ventures sprang forth. Privately operated rest homes and
nursing homes and convalescent homes popped up like ants at a picnic”
(Zinn 1999, 31). Newly organized boarding homes, convalescence cen-
ters, and hospitals proliferated across the country with little homogeneity
among facilities in terms of the services provided or their quality. These

INTRODUCTION 9
unlicensed and unregulated settings were owned and operated by reli-
gious, fraternal, or local organizations (Levey and Amidon 1967; Mor-
gan, Eckert, and Lyon 1995; Sherman and Newman 1988). By 1949, only
eight states had licensure laws governing medical care facilities and some
exempt, publicly run homes (Kinnaman 1949, quoted in Zinn 1999).
Even where statutes existed, resources were not available to enforce them,
a situation that persists in some states to this day.
In 1952 an interesting and still relevant report by the National Com-
mittee on Aging highlighted both the importance of protecting older per-
sons’ autonomy and the public confusion regarding the range of senior
housing types and services offered. For example, the report authors stated
that older people “have the same essential rights and requirements which
all people possess: the right to maximum self-determination, privacy of
person and thought, and personal dignity.” The authors added that “if a
resident is to be helped to function to the full extent of his capabilities, he
should be free to leave and return at reasonable hours. . . . Residents
should be allowed to undertake those normal risks of life which do not
involve special dangers to them” (cited in Zinn 1999). The report further
criticized the institutional characteristics of long hallways and dormitory-
style living typical in long-term care of the early 1900s. These issues are
as topical today, with some contemporary settings designed by architects
who specialize in buildings that are safe, accessible to people with dis-
abilities, and consumer-oriented (AIA 2007; Regnier 1997).4
Federal construction loan programs in the 1950s and the passage of
Medicare and Medicaid legislation in 1965 spurred the growth of nursing
homes. The number of profit-making nursing home chains increased, and
today, the majority of nursing homes are proprietary (Starr 1982, 429).
They are also highly regulated and monitored. Federal legislation adopted
in 19875 brought additional oversight to the long-term care sector, includ-
ing inspection and enforcement of rules credited with improving the qual-
ity of life of nursing home residents.
Despite all of this growth and attention, neither residents nor their
families were satisfied with nursing homes as places to live, as indicated by
surveys of older persons (Yankelovich 1990) and by the publications and
exposés about poor nursing home quality (Mendelson 1974; Sarton 1982;
Vladeck 1980). It is noteworthy that assisted living facilities emerged as a

10 INSIDE ASSISTED LIVING

nursing home alternative during this point in history. Perhaps assisted liv-
ing was an idea whose time had come.

Assisted Living Today

Contemporary descriptions of assisted living pick up on themes and aspi-

rations of long-term care advocates and policymakers that date to the early
twentieth century, including fostering independence, privacy, dignity, and
noninstitutional environments. These concepts thus represent an evolu-
tion rather than revolutionary step forward. Yet the label “assisted living”
is on its way to replacing other similar terms applied to residential hous-
ing for older persons (e.g., “board-and-care,” “residential care”). Forty-
one states and the District of Columbia use the term “assisted living” as
a licensure category (Mollica, Johnson-Lamarche, and O’Keeffe 2005),
and most recently a federal workgroup was formed in response to con-
gressional concern about assisted living practices and regulations (ALW
2003). The workgroup included representatives from 48 national organi-
zations, such as consumer advocates, health care professionals, and senior
housing providers. How to define assisted living became a major point of
disagreement among the workgroup participants, with some insisting that
assisted living had to provide private units (as in Oregon) and others
demanding that states establish at least two levels of care. Although these
issues were not resolved, the following definition was proposed:

Assisted living is a state regulated and monitored residential long-

term care option. Assisted living provides or coordinates oversight
and services to meet the residents’ individualized scheduled needs,
based on the residents’ assessment and service plans and their
unscheduled needs as they arise. . . . A resident has the right to make
choices and receive services in a way that will promote the resident’s
dignity, autonomy, independence, and quality of life. . . . Assisted liv-
ing does not generally provide ongoing, 24-hour skilled nursing.
(ALW 2003, 12)

The preceding section of this chapter provides a brief overview of

definitions of long-term care and the history of assisted living. But what

INTRODUCTION 11
is it like for those who live and work there? In this book, we answer that
question.

The Study Approach

To study the everyday life of people who live and work in assisted living,
we used an approach called ethnography, a research technique familiar to
many social scientists, especially cultural anthropologists. The term is
based on the words ethno, meaning “people,” and graphy, referring to the
writing about a specific subject or object. This method is designed to col-
lect and interpret cultural information about a group of people in a spe-
cific place and time. Since the 1800s there have been many ethnographic
studies of small towns and urban neighborhoods, native tribes, schools,
occupational groups, and many other communities or settings where peo-
ple gather to live, work, worship, play, and raise their families.
The “doing” of ethnography involves researchers systematically
spending time talking to the people who live or work in a specific place,
writing “field notes” that describe what they see, hear and experience,
audiotaping interviews, taking photographs, and carefully documenting
patterns and unique events of everyday life in a particular place. Field
ethnographers (the term we use to describe the researchers who work “in
the field”) focus on how the members of a place (e.g., family members,
workers, students, and teachers) organize, communicate, celebrate, resolve
conflicts, and go about their daily lives. These are the elements of cul-
ture—the way people do things and the reasons they do them. As re-
searchers, ethnographers want to hear about (through in-depth inter-
views) and witness (through observation of daily activities) the explana-
tions that people give for how and why things are the way they are in a
given place.
The purpose of this study was to understand the types of and reasons
for transitions in the lives of current assisted living residents. To conduct
ethnography in this setting means spending time in a place that some
individuals think of as home and others think of as work. People on both
the inside and the outside have definitions of what this place is or should
be. State and local government agency personnel, who are responsible for
licensing and monitoring assisted living facilities, think of it as a health

12 INSIDE ASSISTED LIVING

care setting that must meet written standards of care. Residents and their
families are concerned with both care and creating a sense of “home.” For
this study, we focus primarily on the people who live in the assisted living
residence. But we also interviewed family members of older adults; assisted
living owners, operators, and staff; government employees who oversee
assisted living residences; physicians and hospice personnel working with
people living there; volunteers; and members of trade organizations that
represent the industry.
Data collection began in the spring of 2002 and continued through
the winter of 2007, and included weekly visits over 10-month (on aver-
age) consecutive periods at each of the six sites and interviews with more
than 300 individuals. While spending time in each setting, our field eth-
nographers took extensive notes, some of which appear in subsequent
chapters, describing the events they saw and heard about. These include
routine happenings like meals, informal gatherings of residents, visits
from friends and families, scheduled social activities, and the arrival and
departure of residents and employees. We also observed events that did
not occur on a routine basis such as medical emergencies, regulatory in-
spections, and building renovation and remodeling.
Over time, the “participant observation” by the field ethnographers
included taking part in activities as varied as setting the dining room table,
playing the piano in the central living room space, making cookies for a
Christmas celebration, and playing checkers, bingo, and other games.
When a resident we had interviewed was transferred to a hospital or nurs-
ing home, we went to visit. Through spending significant time with our
interviewees and participating in these everyday events, we found that our
presence became normal and ordinary, permitting access to an “insider’s”
view of daily life. This ethnographic study reveals the variation within and
across these six settings and provides important lessons about aging, man-
aging chronic illness, public policy, social relationships, good-quality care,
community, and long-term-care finance. The local culture of each place,
its daily routines, joys and sorrows, mix-ups, heroics, the caring, and the
jokes—all become real.
We came to see unexpected patterns and to recognize and value the
distinctiveness of the individuals who are often simply labeled as “resi-
dents” in national discussions of the assisted living setting. Each of these
older adults brought to their time in assisted living a distinctive history

INTRODUCTION 13
and background of events, choices, and accomplishments that far exceeded
the constellation of health or cognitive issues that led them there. Like-
wise, the human aspect of these settings was constantly evident as we
observed the staff going about their daily tasks and as administrators set
the tone for service delivery, addressed changing needs, and negotiated
with families, physicians, and social programs on behalf of residents,
many of whom were too sick, confused, or overwhelmed to do so on their
own behalf.
While we might suspect that assisted living residences providing
poorer care would not consent to participate in our study, there were
nonetheless clear variations in how well the six we observed met the stan-
dards proposed as appropriate both by law and in the literature. Though
this study did not focus on “quality of care,” we did not see or hear about
any instances of abuse, neglect, or mistreatment. Given that spectacular
scandals in assisted living and other long-term care settings are the stories
most likely to appear in the national press, we are pleased to have the
opportunity to represent the efforts of many dedicated men and women
who provide daily assistance, in the form of meals, medication adminis-
tration, hugs, showers, transportation, and clean toilets, to frail older per-
sons, some of whom are not capable of saying “thank you” in words.

14 INSIDE ASSISTED LIVING

 T WO

` Miss Helen at Valley Glen Home

T he story of Miss Helen’s move to Valley Glen Home begins more

than 20 years ago. When asked how her mother came from Ten-
nessee to reside in a small assisted living home in Maryland, Miss Helen’s
daughter, Alicia, said, “Well, I guess we can almost go back another gen-
eration. My grandmother also had Alzheimer’s. . . . She lived with us
growing up, . . . but at some point in time, she had to enter a nursing
home.”
In this chapter, we hear a daughter’s account of choosing a long-term
care setting for her mother. We learn about the importance of the relation-
ship between care provider and care receiver during the settling-in pro-
cess, and how they work together making operational decisions about
who can stay and who must go. The key issues presented in this chapter
include the challenges that families face in locating a long-term care set-
ting for a relative; the range of individuals and groups that can be involved
in one person’s move to an assisted living facility; the importance of the
assisted living operator in shaping the local culture; how the individual’s
needs are defined and determined in conflicting ways by different indi-
viduals and groups; and the challenges of finding (or creating) the right
fit between person and place.

Introducing Miss Helen

Five older women lived at Valley Glen Home when our research began in
the spring of 2002. We chose to focus on Miss Helen because we felt that
her unique characteristics and story best exemplify the essence of this

15
small assisted living residence. Miss Helen did not match up to the national
statistics on the average assisted living resident because she lacked the
ability to talk, feed herself, walk, transfer, or manage any form of personal
care without assistance from one—and sometimes two—other people. At
79 years old, she was about five years younger than the national average,
and when we met her, she had lived at Valley Glen for a little more than
three years, more than the national average of 28 months (NCAL 2007).
She would reside there for nearly three more years until her death. Finally,
she was the only African American resident at Valley Glen; the other resi-
dents were white. Beyond these demographic reasons for focusing on Miss
Helen, another motivation for profiling her story came from a compelling
description written by the ethnographer who did most of the fieldwork at
this setting:

We were all admiring Miss Helen’s marvelous hair, fine elegant braids all over her
head. It was beautiful. . . . One of the temporary caregivers, an African woman,
took special care to attend to Miss Helen’s hair . . . [with] intricate braiding. I mar-
veled at how expressive Miss Helen could be without the ability to lift her head,
to voluntarily move much of her body, or to speak. . . . We all commented on it,
and it was easy to see Miss Helen responding with delight, even though her
range of expressiveness is severely limited. As Matilda [a direct care aide] has
indicated, you can tell how she feels. You can tell.

This description is noteworthy: here was an assisted living resident

who could not voluntarily move her body and thus required total assis-
tance to do anything. But in this depiction of hair braiding, something
much more than “grooming” (to use the standard long-term-care lan-
guage to describe hair care) was clearly taking place. It was some quality
that we did not yet know how to label, yet it was recognizable here and
in other examples we observed over time at Valley Glen. Miss Helen’s
case, we believed, could teach us lessons about the needs of impaired older
persons and the capacity of both the individuals and the systems intended
to care for them.
Researchers have described the increasing number and severity of
health conditions—both physical and cognitive or mental—of assisted
living residents in recent years (NCAL 2007; Rosenblatt et al. 2004; Zim-
merman et al. 2005a). Miss Helen seemed to represent that trend, if at an
extreme level. One component of this study included performance-based

16 INSIDE ASSISTED LIVING

evaluation of physical and mental abilities on the “focal case” residents
in the study, including evaluation of each individual’s concentration and
memory, balance, walking speed, muscle strength, and height and weight.
The clinical researcher who conducted these assessments used a lengthy
set of closed-ended questions and performance-based observations (e.g.,
ability to rise from a chair and time to walk several feet), and he audio-
tape-recorded a clinically focused description of his observation of each
resident. During his first meeting with Miss Helen, he recorded this
note:

Miss Helen is sitting in a wheelchair. Her posture/sitting position is such that her
chin is nearly touching the left side of her upper chest. Placing myself in a kneel-
ing position, I can see that her eyes are open. Several attempts were made to
elicit a response from Miss Helen. Each attempt failed. Miss Helen’s cognitive sta-
tus renders her nonassessable . . . at this time. I will attempt to evaluate her on a
later date.

Because Miss Helen could not speak, Rani, the home’s owner-opera-
tor, provided details to the interviewer, confirming that Miss Helen was
totally dependent in all “activities of daily living.” How did Rani and her
small group of female employees take care of not only Miss Helen, but
also Nellie (a resident we describe in more detail below), both of whom
required assistance in every aspect of daily life? For how long would they
be able to care for two women, along with three others, with this level of
impairment? And what was the nature of the care they provided to Miss
Helen and the other residents? We tell Miss Helen’s story as a way of set-
ting the context for this discussion of the nature of life inside a small
assisted living home.

Miss Helen’s Move to Valley Glen Home

Miss Helen’s daughter, Alicia, provided the details on her mother’s life,
including events in the months before she came to Valley Glen Home. The
story is one of gradual but continual decline, until Alicia accepted that her
mother needed to live where she could be supervised so that she did not
injure herself or forget to eat, take medications, or do any of the other
daily tasks required to continue living in her own home. Her decline fol-
lows a typical pattern leading to a move into assisted living.

M I S S H E L E N AT VA L L E Y G L E N H O M E 17
 Miss Helen had been widowed a few years before Alicia’s decision to
seek assisted living care. She had continued to drive her car and to work
as a hairdresser, but Alicia explained that the “subtle signs” of her moth-
er’s decline became increasingly obvious. Miss Helen’s sisters and friends
called Alicia to tell her that her mother was failing and provide detailed
examples of her forgetfulness. During that period, Miss Helen voluntarily
stopped driving and began attending an adult day center, acknowledging
a decline in her health and independence.
Alicia drove to Tennessee each month to check on her mother and
began looking into senior housing near her mother’s home. With a full-
time job and two teenaged sons, Alicia worried that she would not be able
to continue visiting on a regular basis, and she faced up to a common
family problem—how to participate in and oversee care of a parent at a
distance. In addition, Alicia learned that small group homes were not
available near her mother’s home, and she believed that her mother would
not be able to manage in a large facility.
Finally, after an episode when Miss Helen left the stove burner on
unattended, it became clear that it was time for her to move. But where?
All Alicia knew for certain was that she did not want to place her mother
in a nursing home. She recalled that when Miss Helen had placed her own
mother in a nursing home, it had “weighed heavily” on her. Alicia now
felt renewed sympathy with what her mother had experienced in trying
to do the best thing for her parent. In Miss Helen’s time, a nursing home
was the only available option. Alicia’s choices were somewhat broader.
Eventually Alicia moved Miss Helen into her own home for a few
weeks as she considered the options, including having her live with the
family. During this time, she realized that her mother required more care
than she could provide: Alicia’s work and family commitments meant that
her mother would be left alone for hours at a time in a house that was
neither safe nor disabled-accessible. Alicia continued her search.
According to interviews, Alicia’s exploration of long-term care set-
tings was guided by personal, professional, and spiritual considerations.
She preferred a small, homelike residence for her mother. She hired a
private (fee-for-service) case manager to narrow the scope of places she
should visit, and she contacted a local Alzheimer’s support group, where
someone confirmed her instinct that a small setting would be best for
someone with dementia. Alicia scanned the long list of licensed assisted

18 INSIDE ASSISTED LIVING

living facilities provided by a local county department of aging and called
some of them, but it was difficult to appreciate the differences without
visiting each one. The private case manager highly recommended Valley
Glen Home, so Alicia called and spoke to Rani. Although her search
clearly involved legwork, professional input, and money, Alicia also de-
scribed a spiritual element when she explained that she found Valley Glen
“by the grace of God.”
She described her first visit to Valley Glen: “It was just a feeling of
you are at home . . . just the way the bedrooms are, the decorations, and
the . . . it was just a feeling of home.” The fact that Rani lived there with
her own mother and son added to this feeling. At that time, another Afri-
can American woman lived at Valley Glen, and Alicia asked Rani if she
could call this woman’s daughter for a reference. She was relieved after
talking to this woman because, as she said, “there is also a stigma . . . in
terms of, well, a lot of blacks don’t like the concept of not having . . . you
are putting your mother away.” Talking with a peer who had been through
a similar situation confirmed for Alicia that she was making the right de-
cision. Valley Glen Home felt right to Alicia because, as she explained, “I
did not want to put her into a nursing home until it was just absolutely
necessary, so this was kind of also an in-between thing in terms of just me
dealing with the point that I am having to put her anywhere. I can always
say, ‘Well, no, Mom, I didn’t put you in a nursing home.’”

Changing Health
During interviews, Alicia and Rani each independently recalled that when
Miss Helen moved into Valley Glen Home she was capable of walking
and eating independently, though she was limited in other daily activities,
such as bathing and toileting, and did not communicate more than a few
words. Alicia signed her mother up for two sessions of adult day care each
week as recommended by an Alzheimer’s support group, but Miss Helen
continued to decline both cognitively and physically. The first change
came when Miss Helen stopped feeding herself. Rani attributed this de-
cline to the fact that the staff at the adult day center hand-fed Miss Helen
because it took too long for her to feed herself and they needed to keep
to a schedule. The second change was more abrupt, as Rani explained:
“And then I think she had a small stroke. One night she just fell off her

M I S S H E L E N AT VA L L E Y G L E N H O M E 19
bed. . . . One night she just rolled down and then her neck just started to
go off to one side. So they took her to the doctor and to the orthopedic
and they had CAT scans . . . and all the things they did and the doctor
said, ‘There is nothing wrong with her. She just feels comfortable keeping
her neck that way.’ And then the physician said that she may also have
had a stroke.”
Alicia also said: “I guess officially on my mother’s medical records,
. . . it indicates severe dementia. Although the doctors say, yes, it is prob-
ably Alzheimer’s, but we never went the extra . . . at that point, why pay
for extra testing to say, okay, it is officially Alzheimer’s?”
To Rani and Alicia, Miss Helen’s actual diagnosis was beside the
point when it came to meeting her daily needs. We will provide more de-
tails about Valley Glen Home and the people who live and work there
before returning to Miss Helen’s case for additional lessons about long-
term care.

Getting to Know Valley Glen Home

Valley Glen Home is located in a quiet residential neighborhood a few

blocks off a busy thoroughfare. This pleasant, leafy suburb appeared to
be exclusively single-family dwellings with lots of up to one-half acre and
with most homes built sometime in the late 1940s or early 1950s. Archi-
tectural styles included ranchers, Cape Cods, and colonials. The neighbor-
hood had well-manicured curbs, little or no street parking, no sidewalks,
and seasonal displays of spring flowers, flowering shrubs, and large shade
trees.
No exterior signs indicated that Valley Glen Home was a licensed care
facility. The wheelchair ramp that provided access to the back door and
outdoor deck was located toward the back of the long driveway, where it
was not visible from the street. There was a basketball hoop at the end of
the driveway for Rani’s son, a sign that this home was much like any other
suburban residence.
The first impression of the interior is captured in an ethnographer’s
note:

20 INSIDE ASSISTED LIVING

 Just inside the front door was the living room . . . no lobby, no receptionist, no
neutral territory for greetings, impression management, or segregation of resi-
dents from visitors. Once in, we became involved. One woman sat alone in the
long, spacious living room that was furnished with clean and otherwise unre-
markable furniture. This was the furniture of a discount store: functional, neutral
colors, and not designed with disabilities in mind. The furnishings, placed around
the walls of the room, created a long open space with a TV at one end. Probably
one could view the TV from any seat in this room, the largest common area for
residents and their families to gather.

Valley Glen Home was licensed for up to eight residents and at the
highest level of care (level 3, described further in the Appendix) permitted
by the state rules, in addition to being certified to participate in the state’s
Medicaid waiver program for assisted living. Typical suburban bedrooms
were converted into single or double rooms, some with a curtain to sepa-
rate sleeping spaces and provide minimal privacy. A few residents brought
a favorite chair or a small table, and nearly all had photos or other items
to reflect memories and past events. Relatively little other personalization
of space was visible. The décor consisted of cheery floral bedspreads and
curtains. All meals were shared in a large kitchen/dining room, where
Rani cooked and served the meals with the assistance of one employee. A
large, family-style dining table with a plastic tablecloth served for most
meals. One slightly combative resident, Iveris, received meals separately
to minimize stress at the table. A room behind the dining area, containing
a sofa where a live-in care provider sometimes slept, led to the other resi-
dents’ rooms. One of these rooms was occupied by Rani’s mother, who,
while not a paying customer, was no less a recipient of services at Valley
Glen Home. Although not officially a dementia care facility, Valley Glen
did house mostly residents with dementia; some had other physical ail-
ments as well.

Rani’s Story
Before immigrating to the United States, Rani had lived in India with her
husband and son; her sister, Priya, had lived in the United States for more
than 20 years. After their father died, Priya encouraged Rani and their
mother to come to Maryland. In India, Rani had completed a master’s

M I S S H E L E N AT VA L L E Y G L E N H O M E 21
degree in psychology and begun a Ph.D. in management, but she aban-
doned her studies to care for several elderly relatives, including her father,
her in-laws, and an uncle. Rani’s husband remained in India with the plan
of moving to Maryland at some point. But after Rani and her husband
had lived seven years in separate countries, he died in India before his
immigration paperwork was completed.
Priya researched the costs, benefits, and rules related to operating a
group home and suggested that it would be a good way for Rani to earn
a living in the United States and care for their 85-year-old mother as well
as Rani’s teenaged son. The two sisters were co-owners of Valley Glen
Home, but Rani lived there and provided the daily care for residents with
the assistance of hired staff. Priya, who lived in a neighboring county
and worked full time at an office job, took care of administrative duties,
grocery shopping, and transporting Rani, who did not have a license to
drive. Rani’s son did the lawn work. Although some small group homes
are owned and operated by companies, Valley Glen truly represents the
family-style approach.

The Residents
At our first visit to Valley Glen Home in the spring of 2002, five women,
ranging in age from 79 to 95, lived there. In addition to Rani’s mother
and Miss Helen, the other residents were Rosalie, Nellie, and Iveris. Rosa-
lie showed little dementia but had severe arthritis that affected her ability
to walk. Nellie, experiencing fairly advanced dementia, had been in four
senior housing settings before her daughter and a private case manager
placed her at Valley Glen. At that time she could talk, but she reverted
to her native German before losing the ability to talk, walk, or feed her-
self. Similarly, Iveris, a six-year resident, now spoke only a few sporadic
phrases, mostly in Spanish. All but one of these residents was incontinent.
This level of limitation among the residents required a great deal of care
and supervision on the part of Rani and her employees. The workers
could not rely on any resident other than Rosalie to be able to ask for
assistance with any necessary task. Instead, they had to anticipate and
observe the daily needs of these elderly women.
During the 11 months of our fieldwork, one of the original residents
died and two additional residents (both women) moved in: Jane, who had

22 INSIDE ASSISTED LIVING

mild memory loss, and Lucille, who was recovering from a recent fall and
hospitalization. Rani told us that before admitting new residents she at-
tempted to make certain that they were not at risk of “wandering” out of
the house and did not have behavioral problems such as aggression. How-
ever, Rani learned too late that these two new residents each fit one of
these categories.
Jane seemed to have fairly mild memory loss when Rani evaluated
her, and her family assured Rani that Jane would remain in the house. But
in fact she did walk out on two occasions, resulting in several anxiety-
filled hours for Rani and Jane’s family until she was found. Assisted living
managers often rely on relatives of prospective new residents to provide
information on medical conditions, habits, preferences, and behaviors
such as wandering. While some managers believe that families inten-
tionally misrepresent their relative’s abilities to get them admitted, Rani
thought that most likely Jane’s family simply didn’t expect that she would
wander away.
The two new residents could not have been more different. While
Jane was reserved and quiet, Lucille was highly verbal and demanding.
Most days Jane was happy to have afternoon tea time, occasionally asking
heartbreaking questions like, “Am I going to be here for all of my life?”
Although Lucille, who was then 90, did not have a diagnosis of a cognitive
impairment, she presented challenging behavioral issues, the result of
chronic mental illness, resentment at being placed in a care home by a case
manager, or a combination of these and other unknown factors. Lucille
screamed and cursed profusely, refusing to leave her room yet not wanting
to be left alone. She pondered aloud what would happen to the rest of her
life; she advised the two field ethnographers that we should enjoy life now
before it was too late: “Whatever you want to do, do it now.”
The addition of these two women upset the previous calm of Valley
Glen Home and was a strain on Rani, who attempted to spend as much
time as possible with each of them as they adapted to life in assisted living.
Rani provided highly individualized attention during what she called the
“settling in” stage. She explained that when a new resident arrived, she
would not leave the facility for at least a month to provide continuity.
Like most assisted living residents, neither Jane nor Lucille had much
control over the decision to leave her prior home, nor about where or
when to go. As Rani explained, “in group homes, the kind of people who

M I S S H E L E N AT VA L L E Y G L E N H O M E 23
come are not the ones who can decide things for themselves.” This leaves
the large list of choices about whether to move, into what type of place,
when to move, how much to pay, and so on, up to families, who might
also enlist the advice of paid professionals, doctors and nurses, clergy, and
friends.
In Jane’s case, her six children agreed that their mother needed assis-
tance. They had been increasingly involved in her care since the death of
Jane’s husband five years before she moved to Valley Glen Home at age
80. Her daughter, Tammy, told us that over time, as Jane’s memory and
cognitive abilities declined, they hired people to help Jane in her home for
several hours a day. Jane did not like having “strangers” in her home, nor
did she want to live with any of her relatives. She knew that her mind
wasn’t what it used to be and told her children, “I’m so confused, it’s time
for you to put me in a home.”
Like Miss Helen’s daughter, Alicia, Tammy finally hired a private firm
that specialized in locating senior housing. She took this step after Rose-
mary, the person who came to evaluate Jane, said that Jane would soon
need someone with her 24 hours a day and suggested assisted living resi-
dences. The six children divided up a list of places to visit, and Tammy
explained that it was “good advice from Rosemary to start looking as
early as we did. Because the first time you do it, it is such a shock. To think
of Mom going from—she is living in a whole house—to going to that little
tiny room—very much of a shock!” They looked at new large buildings
with flower-filled foyers, at older buildings, and at small homes, and they
easily agreed that smaller was better because they were concerned that
their mother would get lost trying to find the dining room in a large
building.
The first weeks after Jane’s family brought her to Valley Glen Home
were confusing for her, but her children, grandchildren, and brother orga-
nized a schedule so that at least one relative would be there to see her each
day. Even though Jane quickly forgot that anyone had been to see her or
had taken her out to eat, the family believed it was important that some-
one be there. Rani, too, was committed to helping Jane as Jane repeatedly
pondered “Where am I?” and “Why am I here?” Rani explained that all
new residents need to be told that they are in a safe place and that every-
thing will be all right, but that Jane would likely need daily reassurance

24 INSIDE ASSISTED LIVING

because of her memory loss. Although Jane was confused, she remained
pleasant and accommodating.
Lucille, on the other hand, was not happy about moving to Valley
Glen Home, and she focused her sizeable anger on Rani. Lucille came to
Valley Glen from a hospital after she fell from her bed during the middle
of the night and was not found until the next day. She had an emergency
alert system but forgot to use it. Although she suffered only bruising, it
was the last straw. She had lived in a high-rise apartment building for
several years, and as her health declined during her eighties, her only
known relative, a niece who lived in another state, arranged for and paid
a private case manager to check in on Lucille. Sara, a trained social worker,
was employed by a private geriatric case management firm. She regularly
visited Lucille, and she hired a caregiver for a few hours a week to make
certain that Lucille had food, saw a doctor, took her medications, and
paid her bills.
Over time, Lucille’s increasing frailty and memory loss resulted in
several scares. The fall from her bed convinced Sara, if not Lucille, that it
was time to move Lucille to assisted living. Sara told Lucille that the move
would be temporary, just until she recovered, even though she secretly
planned to cancel the lease on Lucille’s apartment. About this ruse, Sara
said: “When we move people we give them as much information as they
can handle. And with her, we never talked about—your apartment is gone
and all your stuff is gone and this is it. And so she would always refer
back to—I mean it took her several months before she would stop asking
about her apartment and paying the rent, and paying all the utilities and
different bills and things like that. It took a while to let go of that.”
Lucille’s transition was traumatic for nearly everyone at Valley Glen.
She shouted obscenities at Rani and the direct care workers; she repeat-
edly screamed, “God take me now; I want to die!” causing at least one
other resident to join in with similar pleas. Rani said that Lucille’s attitude
spread to the others “like a poison.” To further complicate matters, Lu-
cille’s health deteriorated, and she was hospitalized for a bowel obstruc-
tion. A home health nurse and nutritionist visited her when she returned
to Valley Glen and strategized with Rani and Sara about how best to get
Lucille to eat more, as she was losing weight. Sara, knowing about Lucille’s
sweet tooth, brought chocolate-flavored nutrition drinks and cookies. De-

M I S S H E L E N AT VA L L E Y G L E N H O M E 25
spite Rani’s best efforts to please Lucille, Sara reported to us that Lucille
told Rani: “I’m really glad I’m here. It’s you I don’t like.”
Still, Rani worked to get to know Lucille and to meet her on her own
terms while slowly acclimatizing her to living at Valley Glen. Lucille in-
sisted on eating her meals in her room while watching television, a lifelong
habit. Rani accommodated this wish but also bargained to get Lucille to
have one daily meal with the others. Rani introduced Lucille to Rosalie,
hoping that a friend would ease her distress. Over several weeks, Lucille
did adjust despite complaining of a sore leg and ongoing stomach pains.
In January, five months after moving to Valley Glen, Lucille suddenly col-
lapsed at the dinner table, and Rani called an ambulance. Lucille died the
following day of a heart attack; the suddenness of her loss was shocking
to Rani, to her staff, and to Sara, the case manager. Only one resident,
Rosalie, was capable of comprehending Lucille’s departure; if the others
were aware of this development, they did not show it and Rani chose not
to tell them.
Even as new residents adapt to life in assisted living and much time
and energy are focused on making necessary adjustments, the topic of
aging in place comes up. For example, the staff and family might question
whether the facility is or ever will be the right fit and for how long the
individual might be able to stay. Jane’s two unescorted journeys out of
Valley Glen posed such questions because Rani’s house did not have
alarms to prevent someone from wandering out. Rani had to decide
whether or not she could retain a resident who made repeated efforts to
leave; she tentatively agreed to do so but only after locking Jane’s bed-
room window so that at least one possible escape route was controlled.
Jane’s family had to decide whether their mother might be better off in a
dementia care facility that had alarms on the exits. Jane’s daughter Tammy
explained her feelings about this:

I love [having my mother] with Rani and I want her to stay there
with Rani. But you know—I don’t want her to be locked up, even at
Rani’s. And Rani doesn’t want the window open. And I want the
window open. And I’ll tell Rani, “I will take the responsibility if you
want, I will write that down—if she climbs out the window and falls
and breaks her neck—it’s my responsibility—I will take that—she
needs the window open.” Obviously I don’t believe Mother would do

26 INSIDE ASSISTED LIVING

 it or I wouldn’t go along with it—but I’ve talked to all my brothers
and sisters and they are all in agreement too —“That’s right, if she
falls out—so be it—you know we did the best we could.” When she
got out the last time, I said, “Rani, you are going to have to tell me
when this is no longer the right place for her. Unless it’s obvious to
me, I would rather keep her here.” So I said, “You are going to have
to say when her care is just getting beyond you.” And I told her
then—“If you want, I’d pay for another aide just to keep her here.”

Fortunately, Jane did adjust to life at Valley Glen and no longer at-
tempted to leave on her own. Her children, too, adjusted to their mother’s
new life and capabilities. They learned that taking her out for drives or to
a restaurant were too confusing for her; she did better with a small num-
ber of visitors and with phone conversations. Even so, they prepared
themselves for eventual change by gathering information on dementia
care facilities should they need to move Jane yet again.

The Employees
Rani described herself as “resident manager or assisted living assistant or
something like that.” Her explanation might be seen as a lack of pretense
and a subtle disregard for the state’s official terminology (“assisted living
manager”). When we began our research at Valley Glen, she employed
two staff members, both women, both from Africa (Tanzania and Zam-
bia). Matilda attended college on the weekends and had worked at Valley
Glen Home for several months, living there during the week. Grace lasted
only two weeks and was replaced by Yolanda, who was from West Africa
and had worked on and off for Rani since 1996.
Both Rani and her sister, Priya, reported that staffing, including find-
ing individuals with the right attitude and abilities, presented an ongoing
challenge. They preferred to hire live-ins but only rarely found an indi-
vidual willing to accept such a lifestyle. More often, they hired three
round-the-clock shifts, but it sometimes happened that Rani was by her-
self at night, the only one available to respond if any of the residents in
her care awoke needing assistance. This situation was permissible by state
rules and was supported by the use of baby monitors to better hear sounds
in resident rooms. Maryland continues to debate a requirement for

M I S S H E L E N AT VA L L E Y G L E N H O M E 27
“awake overnight staff,” a rule that would apply to all assisted living set-
tings regardless of whether there are 5 or 105 residents but would have
greater fiscal impact on small homes with limited staffing.
Rani and Priya had both completed certified nursing assistant (CNA)
training, and after completing medication management coursework, Rani
took sole responsibility for administering each resident’s daily medica-
tions. She told us that she worried that an employee, especially a newer
one, would make a mistake. Both women took continuing education
courses from a county agency and from a senior housing trade group to
bolster their skills and understanding of the changing context of assisted
living. The training schedule of the senior housing trade group did not fit
Rani’s schedule very well because as one of usually only two staff mem-
bers there at any given time, she was rarely able to leave Valley Glen
Home during the day. In any case, Rani told us that the care she had pro-
vided to elderly relatives in India provided her with the best knowledge
about how to assist her residents.
Over the years, some of her employees completed CNA training,
some were nursing students, others had worked as home health aides, and
a few had no prior caregiving experience. Matilda, the aide from Tanza-
nia, had cared for her own family members and viewed it as a normal part
of life. She said that when her grandmother came to live with her family,
her own mother had prepared her for three-generational living by telling
Matilda and her siblings, “You should remember. She is learning to live
with you as much as you are learning to live with her.” Matilda extended
this sensitivity to the residents of Valley Glen Home, realizing that she was
“the one that needs to change and suit this environment” to make their
lives comfortable.
Regardless of each person’s prior experience, Rani provided on-the-
job training for new employees. She told us that it sometimes worked best
if a new hire did not have prior medical training because then she could
teach that person to do things the way she wanted them done rather than
retraining him or her. She described her hands-on approach: “Initially I
have to get myself involved a lot. In fact, every moment I am with new
employees in the beginning. But if they are here for the next six months,
say, then they get settled. They get to know the person [resident] and so
they know how each one will react and what they require and so on. So
when they get to know them then I am confident that they can take care

28 INSIDE ASSISTED LIVING

of them, and then, at that point, I slowly try to withdraw. But initially, I
have to make sure that everything goes on well and they know what to
do with each person and with each situation.”
Rani also spoke of the stress that some residents experience when
employees quit, call in sick, or have transportation problems, leaving her
short-staffed. In such cases, she might have to hire an aide from a private
agency. Maintaining staffing consistency, she said, was the most difficult
aspect of operating an assisted living home. She knew that ultimately she
represented the main source of stability and continuity to the residents,
especially to those with cognitive impairments, and for this reason, she
rarely left the home.
Staffing decisions at Valley Glen Home were based on finances, train-
ing, and the needs of residents. Over time the residents’ needs increased,
and with this came added demands on Rani. For example, at one time she
did not require staff assistance during the late afternoon hours because
she was able to serve dinner to all of her residents, most of whom were
able to get to the table and feed themselves. However, both Miss Helen
and Nellie came to require help with eating and walking, so Rani had to
hire staff on a 24-hour basis, at a significant additional cost.
In a small setting like this one, each employee contributes in many
ways. The workers did not have formal titles; Matilda simply referred to
herself as an “assistant.” Rather than being specialized into work catego-
ries like direct care, housekeeping, and dining staff (among other catego-
ries found at some larger assisted living settings), the staff at small homes
assist residents with personal care, do the laundry and housekeeping, pre-
pare and serve meals, and provide emotional support, entertainment and
activities, a hand to hold, and many other counted and uncounted tasks.

Valley Glen Home: Group Home or Assisted Living?

When Valley Glen Home opened for business in the fall of 1995, it was
designated as a group home according to the classification system in effect
in the state at that time. The regulations governing senior housing, in
Maryland as in other states, seem always to be in transition (Mollica,
Johnson-Lamarche, and O’Keeffe 2005; OHCQ 2005). Rani continued
to use the term “group home” to describe Valley Glen, despite the state’s

M I S S H E L E N AT VA L L E Y G L E N H O M E 29
implementation of the assisted living licensure category two years before
our first meeting with her. The differences between traditional group
homes—many with three or fewer residents (Morgan, Eckert, and Lyon
1995)—and contemporary assisted living homes range from the trivial to
the profound. The regulatory climate in Maryland and other states means
that small homes maintain a tenuous hold within the larger world of
“assisted living” (Carder, Morgan, and Eckert 2008). What these small
homes are called might matter less than whether or not they are seen as
legitimate long-term care alternatives in the eyes of policymakers and
consumers.
As a licensed assisted living setting, Valley Glen Home participated in
the Medicaid subsidy program, received technical support from agency
staff, qualified for liability insurance, and most importantly, received
referrals from agency staff on behalf of potential clients. Miss Helen’s
daughter, Alicia, chose Valley Glen for her mother in part because of the
strong recommendation from a county agency employee. However, these
positive aspects of being licensed as an assisted living residence were coun-
terbalanced by the strings of regulations.
Many operators dread the various inspections (e.g., state licensure
agency, fire marshal) that periodically interrupt the regular flow of daily
life and care. Given the relatively long list of regulatory items that each
assisted living facility has to enact, record, and oversee, the potential that
an inspection will uncover some problem looms large. Rani told us that,
from her experience, the meanings of particular regulations seemed to
change from one visit to the next. For example, the state regulations per-
mit “capable residents” to administer their own medications if there is
space to store and lock medications within their apartment or room. But
at one visit to Valley Glen a state regulator took Rani by surprise by focus-
ing on over-the-counter medications kept in the residents’ rooms, as Rani
told the ethnographer:

Rani said she had prepared all the files and all the paperwork was in impeccable
order, the place was clean, everything was ready. But this time they checked the
creams and lotions in everybody’s room. Rani was miffed and frustrated. Nellie
has a lotion in her room, placed where she cannot get to it. [Nellie could not
walk.] The lotion was there for the caregivers to apply to Nellie’s skin each
night. . . . And what about Rosalie? The inspector asked if she could look inside

30 INSIDE ASSISTED LIVING

 Rosalie’s dresser drawers, and Rosalie said, “No.” Apparently the inspector opened
the drawers anyway and found some creams that she applies to her legs when
they hurt. This application of arthritis creams for her knees is something Rosalie
can do for herself. Rani is incensed. “Now I am supposed to make Rosalie ask for it
every time she wants it?!”

This example highlights the contradiction that sometimes occurs in

assisted living facilities between supporting a resident’s independence, cre-
ating a strategy that meets the needs of residents and care staff, and the
definition of risk. Rani once explained that “the county tells us . . . we
have to help the residents to maintain their independence and whatever
they can do they should be able to do as much as they can. So we try to
do that.” Yet now she was penalized for allowing one cognitively capable
resident to keep medicated lotions in her room and for leaving medicinal
cream in the room of Nellie, who was incapable of independent move-
ment. Rani argued that her residents were not at risk of ingesting the sub-
stance in question and that the regulation made life less convenient for all
involved. She did not mention the possibility of providing a locked cabinet
to store the medicines in residents’ rooms, as the regulations would have
permitted.
Rani’s kindhearted desire to provide for the needs of her residents
conflicted with the state requirements in other ways. For example, she de-
scribed how she once determined what Rosalie needed: “She has a sensi-
tive stomach. Digestion is a bad problem with her. So I used to discover
what is good for her and what is not good and give her what was right.
. . . So I used to give her antacids. So I am telling you . . . we are not sup-
posed to give any medication without a doctor’s receipt—over the counter
or anything. . . . But now, nobody told me she has the acid problem or the
problems of digestion. . . . I just thought it was important to take care of
her problem rather than to bother with, you know, some kind of regula-
tion. So I gave her this antacid and then she felt better.”
Rani went on to explain that she knew that heartburn could mask a
more serious condition such as a heart attack, and she took care to moni-
tor Rosalie’s status. Although she had been trained to administer medica-
tions, Rani was permitted only to follow the directions on prescribed
medications. It appeared that Rani took a more quasifamilial role in try-
ing to do what seemed best for the health of those in her care, rather than

M I S S H E L E N AT VA L L E Y G L E N H O M E 31
a professional/medical approach that would have conformed more to the
regulatory view. The extensive amount of time that Rani spent with each
resident seemed to foster intimate and intuitive knowledge that tran-
scended the regulatory assumptions that require mass solutions to indi-
vidualized situations. Her attitude that the women under her care were
“like family” might explain why she felt justified in administering com-
mon over-the-counter medications without a “doctor’s receipt.” Perhaps
ironically, state regulations would permit Rani to make such medication
decisions for her own mother, who lived in one room, but not for Rosalie,
who lived in another nearby.
Another requirement that the new state assisted living rules imposed
was a designation of each resident’s “level of care.” As a licensed manager,
Rani needed to observe and record the medical diagnoses, physical abili-
ties, and cognitive impairments of each resident. A state-developed form
provided a checklist of items and a scoring system from 0 to 3. Level 1
described people who needed little assistance and level 3 those who needed
a great deal. During the course of an interview, Rani first described Miss
Helen as level 2 and then as level 3, with the explanation that Miss Helen
“gets the maximum help that we can give, but on the behavioral aspects
she is excellent. She has always been excellent. So, she is under level 2.
But the amount of care we give is not level 2. We give her total care—we
call it. We give her care for every aspect of her day-to-day living.”
Several minutes later, Rani clearly separated the physical from the
behavioral—perhaps a function of her training in psychology. Pointing
out that the state level-of-care system has four levels, from 0 to 3, she said:
“So earlier when Miss Helen came she was on 1 or 0, but now she is on
3. But when it comes to behavioral items she is the same.”
So, was Miss Helen level 2 or 3? The apparent confusion became
understandable when Rani explained her understanding of the state’s
level-of-care system. Referring to another resident, she said: “Now actu-
ally she is level 1, but she is assessed at level 2. Now, that’s interesting
because if you go under certain programs, like Medicaid waiver, they
don’t give Medicaid waiver for level 1. So, everyone who goes under that
will have to be a 2. So when I was trying to assess, I have a problem to
give numbers, because I can’t say that she needs a whole lot of care. Be-
cause I know that she doesn’t need, but it has to be according to the regu-
lation set up there.”

32 INSIDE ASSISTED LIVING

 In short, there were cross-pressures between evaluating level of care
realistically in terms of physical and cognitive traits and the funding that
might—or might not—be available to retain residents in Valley Glen Home.
In addition, there is tension between subjective and objective level-of-care
measures. Rani described the care that she gave to Miss Helen as “total”
(in regard to physical tasks such as eating, bathing, and using the toilet)
and “very easy” (in the sense that she caused no trouble or disruption).
Based on an objective functional assessment of Miss Helen—that is, the
way she is presented on paper—it is safe to say that she would not be
retained in many assisted living facilities (Chapin and Dobbs-Kepper
2001).
Most important, perhaps, is that to Rani, Miss Helen was more than
the official record and more than a statistic; she was family. In describing
the care that Rani and her assistants provide to Miss Helen and others, the
daughter of another resident said, “They are attached. That’s the thing.
The staff love them, you know.” This personally focused and quasifamil-
ial approach to assisted living explains why subjective feelings and objec-
tive assessments merge into apparent uncertainty over whether Miss Helen
is a level 2 or a level 3. In this case, a relational model of care affects deci-
sions related to determining the level of care.

Final Thoughts

As Alicia reflected on her mother’s physical and cognitive decline, she re-
marked, “I think if I wheeled her in as she is today, I don’t know if Rani
would have taken her.” She described the deep relationships now shared
between herself, her mother, Rani, and Rani’s assistants that had devel-
oped over time. Alicia especially appreciated that Rani lived in the home
with her own mother, believing that this arrangement resulted in long-
term stability that could not be matched by most other settings. When
Rani was asked to compare her home with other assisted living residences,
she said, “We are different. Mainly because we interact with the residents
so much more closer. In time we come to feel they are a part of us. We are
a big family. That’s how we feel, as time goes on.”
Despite the family-like relationships, Rani had to make difficult choices
about which residents could stay and which ones she might have to dis-

M I S S H E L E N AT VA L L E Y G L E N H O M E 33
charge. For example, she had to ask one resident to move after this resi-
dent, like Miss Helen, became incapable of walking and required total
assistance to move between bed and wheelchair. The difference was one of
scale. Miss Helen was small and relatively easy for Rani and one other
person to lift. The other resident simply weighed more than two women
could manage to lift on a daily basis, and Rani had to ask the woman’s
family to relocate her. This practical reality might not differ from that
faced by family caregivers who place their relative in a skilled nursing
home when the individual’s condition exceeds the family’s capacity to
assist.

Cultures of Care

The operator has a large role in shaping the culture of a specific place.
Above all, in spite of the various classifications and regulations that de-
fined assisted living, Valley Glen Home was “Rani’s Place.” It is difficult
to imagine her version of assisted living care being developed nationally
into a chain of assisted living residences because it was so dependent on
her style. Rani’s approach was highly personal and relational; all the
rest—the regulations, official titles, and standardized tools for classifying
residents into levels of care—she simply dealt with as needed. Sometimes
this approach conflicts with other cultures of care.
Senior housing and long-term-care regulators use concepts such as
functional status, admission and discharge criteria, and levels of care
when they define and enforce rules governing assisted living. Therefore,
in addition to the local culture established by Rani, Valley Glen Home
operates within a larger culture that relies on objective standards to define
levels of care and admission and discharge criteria. Rani variously de-
scribed Miss Helen’s level of care as 2, 3, “total,” and “very easy.” These
standard constructs, although required by regulations, miss many dimen-
sions of daily practice, especially those that might fall under a relational
model of care.
The experience of this study at Valley Glen Home might prompt us
as researchers, policymakers, and practitioners to reexamine the rationale
and value of basing policy and practice decisions solely on the status of
individuals as represented by a numeric score. The case of Miss Helen at

34 INSIDE ASSISTED LIVING

Valley Glen asks us to question our assumptions. Clearly, statistics pro-
vide only part of the larger picture.
What is missed in the numeric level-of-care scores is the obvious fact
that Miss Helen was loved by Rani, Matilda, and Yolanda. While assisted
living regulations define a service called “grooming,” the earlier descrip-
tion of the intricate and elegant braiding of Miss Helen’s hair by an Afri-
can caregiver, a process that would have taken well over an hour, clearly
indicates that much more may be taking place.

M I S S H E L E N AT VA L L E Y G L E N H O M E 35
 THREE

` Opal at Franciscan House

Maria [the owner-operator] takes us on a quick tour of Franciscan House. The

front door opens onto the living room, where all but one of the residents is
seated; everyone knows the comings and goings of anyone entering or leav-
ing the house. Maria shows us the dining room, the kitchen, and a small
powder room in the entrance hall. Off the entrance hallway there is a second
downstairs hallway that leads to one resident room and to the room of the
live-in caregiver, Angelina. Maria escorts us into the resident room without
knocking. On a bed is a woman who seems to be just sitting, doing nothing.
She is a bit gruff and says hello to us when we are introduced, although with
no inflection in her voice and a bit of a scowl on her face. She is Opal. Maria
leaves the room without shutting the door, and Opal comes to the door and
demonstrably closes the door behind us. She seems to want to be left alone,
not bothered.

F ranciscan House, like Valley Glen Home, is one of the legions of

anonymous small group homes scattered throughout the country.
Located in a suburban community, this two-story house does not stand
out from any other dwelling in the neighborhood. Yet it is a licensed busi-
ness, a workplace, and a home to those who reside there, whether staff or
paying customer.
Over the course of nine months of fieldwork in Franciscan House and
three years of follow-up telephone calls, we witnessed both the stability
of day-to-day life and the changes, including the addition of new resi-
dents and the death of others. Most of the seven older persons we found
residing there on our first day of research had been there for at least two
years, including Opal, who had arrived in 2000 and was still there at a
follow-up in January 2007. During the time we knew her, Opal’s ability
to recall events, both distant and recent, became increasingly limited, and

36
although she was able to make social small talk, she often argued with
others at Franciscan House.
From Opal’s experiences we learn some of the possibilities and limita-
tions of a small group home. Opal was accepted despite her frequent
verbal outbursts; she could shower herself with direction from Angelina
but had no idea what kind of medication she took or for what conditions;
and she was bored with watching television and wished for more mean-
ingful activities. Her day-to-day routine represents the relative stability
and ordinariness of everyday life in a small-group assisted living home.

Introducing Opal

Our understanding of Opal’s story developed over nearly four years and
is based on eight interviews with her, as well as interviews with Maria,
Angelina, and the relatives of other residents. We identified Opal as a focal
case in part because she is typical of the current cohort of assisted living
residents; she was a widowed woman who worked at low-wage jobs while
raising her children, and she showed signs of early dementia. Yet Opal
was unique in other ways. At 75, she was younger than the other Fran-
ciscan House residents, whose ages ranged up to 87 (the average age was
83), and younger than the national average (NCAL 2007). She had
worked as a licensed practical nurse until relatively late in her life and still
referred to herself as a nurse. Finally, unlike the other residents described
in this book, Opal was not particularly well liked by the staff, other resi-
dents, and their families. This relative “outsider” status led us to focus on
her. We wondered how and why Franciscan House’s owner, Maria, put
up with her and how she affected daily life in this small home. Although
Opal might not be the typical assisted living resident in all dimensions,
there doubtless are other individuals like her who live in these residences
somewhat uneasily, at times creating conflict and at other times fitting in
as part of the group.
Opal tended to converse in small talk, commenting on the weather or
what she or others were wearing. At times she related convincing details
about her childhood, college, her marriage to a military man, and her
children. And yet, in response to a question about the happiest event in
her life, she stated, “I’m sure there was a lot of them, but I can’t remem-

O PA L AT F R A N C I S C A N H O U S E 37
ber.” (This comment came at the end of a 90-minute interview during
which she described many happy events, including a “wonderful” mar-
riage and four children.) Was this response due to fatigue after a long
interview, uncertainty about how to answer an overly broad question, or
a sign of dementia? Earlier in the interview she said: “I don’t remember
much of anything. See that’s my biggest problem is my memory is going
really fast. I don’t remember when I did things.” While she could not re-
call how long she had lived at Franciscan House, she could describe the
other residents (though not by name) and the daily routines. Opal didn’t
know the name “Franciscan House” but knew that she did not care for
Maria, whom she sometimes referred to as “that lady out there.”
Most of what Opal said seemed plausible, but not everything did. For
example, she said that her children took her car from her because they
thought she was too old to drive. But then she added that they put the car
into a river. Not unlike other people we interviewed, she retold several
stories during our conversations, including the death of her husband, her
mother, and her brother. But in one telling of her mother’s death, Opal
remained in Germany, where her husband was stationed, because she
didn’t think that she should leave her children. In a later telling of this
story, she implied that she cared for her mother throughout her illness.
Maria once noted about Opal that, “You wouldn’t know that she has
dementia.” Over time, however, Opal’s memory loss became increasingly
evident to her and to others, though she remained in good physical health
during the time that we followed her life at Franciscan House.
We identified two themes that seem to influence the way Opal lived
her life inside this assisted living setting. Much of what we know about
Opal’s life revolved around conflict with others, including employers and
family, and then with Maria and the other residents. The second theme,
“It’s the most boring life you can imagine,” describes her attitude toward
living at Franciscan House.

A Lifetime of Conflict
Opal often described conflicts that occurred throughout her life. Although
she had a happy childhood, her family was “lucky sometimes just to have
flour for biscuits.” She grew up in Mississippi during the Depression,
graduated from high school when she was 17, and then completed nursing

38 INSIDE ASSISTED LIVING

school. Her husband was a local boy who joined the military; after their
marriage, they moved several times, eventually living on two southern
military bases and in Germany.
Opal said that she had a “real good marriage,” but that her husband
died after 12 years, leaving her to care for their four children. She regret-
ted an unresolved argument with her husband shortly before his death.
She explained that they did not typically fight but that she had been angry
with him on that day. Opal married a second time, but this marriage lasted
less than one year because “it was terrible conditions.” So she raised four
children by working as a licensed practical nurse and with financial sup-
port from her husband’s military pension. Opal’s discussion of her more
recent history was murky compared with the rich detail she offered about
her younger years. She explained that over time she lived with her son,
brother, and/or one of her three daughters. It is likely that she did spend
some time living with each of these family members.
What remained consistent was some form of conflict with each per-
son; these conflicts resulted in her living alone later in life, something she
did not like. In particular, she hated eating alone. Possibly the most dra-
matic conflict she described was an exchange with one of her daughters
sometime before moving to Franciscan House: “We almost come into a
fight; I twisted her arm, and she twisted my arm, like this you know, and
I got mad because it was a bad twist, and I left. I should have stayed
there.” Even after this event, Opal continued to wonder whether it might
still be possible for her to live with this daughter rather than at Franciscan
House. Although we do not have data to suggest whether physical battles
like the one described here were common in Opal’s life, during an assess-
ment interview, she volunteered, “Sometimes I’d like to hit people; I’d like
to hit the woman that owns this place.” To our knowledge, she never
carried through with this thought.
Opal’s history of conflict followed her into Franciscan House, where
she regularly had heated verbal exchanges with Maria and with the other
residents. The daughter of one resident described Opal as “nasty.” Maria
explained, “So far I’m blessed, except for Opal. She just has her own tem-
per.” Opal herself said, “I usually get along pretty good with people. Of
course, I don’t get along with these people here very much. I don’t dislike
them, but I don’t like them either and I think there’s a difference in that.”
Another time she summed up her personality by saying, “I’m not the

O PA L AT F R A N C I S C A N H O U S E 39
friendliest person; not friendly, but I’m not unfriendly either.” Opal’s
unwillingness to interact with others meant she lived essentially alone in a
home the size of a typical suburban house with seven other residents and
a live-in caregiver.
Opal described herself as someone who always did what she wanted
to do; from her perspective, living in a small residential setting like Fran-
ciscan House clearly conflicted with her former life. She said: “Maria’s
boss here, and you gonna know she’s boss. And so, the other things that
she does and goes through, or she ever has to say anything about it, you
won’t do it again. So, it works pretty well, because if you had, I had an
argument with one of the girls [referring to another resident], Nancy here,
very big, but Maria didn’t get involved in it, she just let it, me and Nancy
argue until we’d argued out. So, I’ve got no argument about this place or
with Maria.” (Nancy had a close relationship with Tom, the only male
resident of Franciscan House; the two typically sat next to each other on
the living room couch, often holding hands. Opal often spoke of wanting
Tom’s attention, and this was an ongoing source of friction between the
two women.)
Opal’s outspoken manner challenged Maria’s commitment to stabil-
ity and routine at Franciscan House. Maria attempted to implement an
efficient schedule and a home managed through routines that included
getting each resident up and dressed before serving breakfast, as she ex-
plained in an interview: “Like some of the residents, they said, ‘We want
to eat first before we get dressed,’ so we give into that. But then eventually
we say, ‘See, all the girls are dressed up so nicely, why don’t you try to,’
[and] eventually they do that too. It’s contagious when they see that they
are so odd compared to the rest. They would, like Opal used to say, ‘No,
I eat first before I take a shower,’ but then afterwards, I say, ‘Okay, break-
fast is not ready yet so take a shower, everybody is done, you’re next,
you’re the last one.’ So she would just give in and do that. Eventually they
blend in. But to start with they have their own personality.”
Opal confirmed Maria’s need for stability: “It’s always been the
same,” she said. “That woman that runs the place here, you know, she
always makes it the same.” These comments illustrate the boundaries of
individuality and autonomy in a small group setting, almost like a large
family that requires some semblance of order to avoid sliding into chaos.
Although Opal apparently adjusted to Maria’s schedule, through chal-

40 INSIDE ASSISTED LIVING

lenging the routines she often got her own way. For example, Maria pre-
ferred that the residents remain in the living room during the day; all of
them did so except for Opal, who most often stayed in her room either
reading or simply sitting on her bed. Maria may have accepted this com-
promise because of her discomfort with Opal’s occasional outbursts. Con-
flicts arose from tangible events, such as an episode when another resident
sat in Opal’s preferred living room chair, as well as disagreements that
were less obvious to others. When Opal did join the others, her presence
was heard and felt as she made demands for a specific food or drink or for
something to do, or told the others what they should be doing. Maria
often permitted Opal to keep to herself as a way of maintaining the
peace.

“It’s the Most Boring Life You Can Imagine”

Even though Opal once described Franciscan House as a nice place to live,
she most often spoke of the unending boredom, and she repeated this
theme during each of her interviews. Some of the tedium resulted from
her perception that there was nothing worthwhile to do. Opal had always
worked: “By 10 years old I was out there getting the milk and getting
vegetables and going and selling, selling to the people around the neigh-
borhood.” She said she would have liked to cook a meal on occasion, but
Maria would not permit it.
Opal’s main form of enjoyment came from reading. She liked to read
the newspaper because then, “you’re not just dumb about what goes on
in the world.” She expressed a desire to keep up with current events, both
locally and abroad, and she wished that the others at Franciscan House
could have discussions based on magazines and news events. The other
residents were too cognitively impaired to do so—and possibly Opal was
as well. She also said that she would go to church if given the chance, and
she thought Maria should take the residents. But in fact Maria arranged
for a local minister to visit each month to give a sermon. Opal chose not
to listen to him because “he’s not the kind of preacher I like, anyway.”
Opal spoke of many other things she would do if given the chance:
go camping, go dancing or to a movie, take a college class, join a book
group, go bowling, go to a senior center, go shopping, go to the library,
and get married to “a nice man.” Her life choices were constrained in part

O PA L AT F R A N C I S C A N H O U S E 41
because Franciscan House offered only a few activities (e.g., bingo, music),
most of which Opal refused to join, and because of her meager finances.
She relied on public subsidies to pay her monthly fee; the small stipend
did not permit her to purchase anything more than basic personal items,
such as toiletries. Few of the larger assisted living settings in Maryland,
the ones most likely to offer a full menu of social activities, accepted in-
dividuals who relied on public subsidies.1
During the time we knew her, Opal first shared a room with Lucy.
After Lucy died she shared with Mildred, who was deaf and nearly blind.
Maria provided the furnishings in this and all rooms throughout the
house. Opal’s room contained two twin beds, each with a dark wooden
headboard, and a side table on which sat a brass lamp. The matching
bedspreads displayed a wild print with large pink tropical flowers and
pink ruffles. The two beds were positioned parallel to each other, with
either headboard flanking a window, through which a large shade tree
was visible. At the foot of each bed was an upholstered chair, and on the
wall over each bed was a wooden cross adorned with dried fronds from
a Palm Sunday church service. Each resident had at least one framed pic-
ture of family members located on the wall or a side table, a wooden
bureau of drawers, and a closet. The floor was covered in a low-nap dark
brown carpet, and the walls were painted a warm cream color. Unlike
some other assisted living settings, the furnishings of rooms included few
items from former homes reflective of the personality or history of the
individuals sleeping there.
Opal was not the only person to observe that life at Franciscan House
was often dull. Most of the residents’ families felt generally positive about
the care received by their relatives, but some with whom we spoke com-
plained about the lack of activities. The residents spent most of their time
sitting around watching television. Maria sometimes led the residents in
song or word games as well as seated stretching exercises, but the small
living room left little space for other pastimes. In addition, most of Maria’s
time was devoted to keeping the home organized and operating smoothly,
with tasks including cleaning, purchasing groceries, completing state-
mandated paperwork, and making certain that each resident remained
healthy and physically stable.

42 INSIDE ASSISTED LIVING

 Getting to Know Franciscan House

Franciscan House was opened in 1989 by Maria and Phillip Agbuya, a

couple originally from the Philippines. At first they lived at Franciscan
House with their two children, but they later moved the family into a
nearby single-family home. Their approach to running a group home dif-
fered from that used by Rani at Valley Glen Home. The Agbuyas clearly
separated their family life from the business of providing care to the resi-
dents, in contrast to Rani, who lived in the home with her own mother
and son. Maria’s prior experience as an engineer probably guided her
daily efforts to instill order, efficiency, and stability at the same time that
her strong Catholic faith influenced her approach to caring for others, as
we describe in more detail below.
Maria maintained responsibility for day-to-day operations, while
Phillip, a registered nurse employed at a local hospital, assessed the resi-
dents’ health care needs in addition to maintaining the lawn and a ter-
raced garden behind the house. Angelina, the live-in caregiver (also from
the Philippines), was responsible for personal care, housekeeping, laun-
dry, and meal preparation. The Agbuyas moved to the United States with
the hope that their teenaged children would get a better education and to
be closer to Phillip’s sister, who suggested that operating a group home
would provide a good source of income. Paid caregiving for strangers was
a foreign concept to Maria, as was the existence of “senior housing.” In
her home country, families cared for their frail relatives.
The research notes from the first visit to Franciscan House describe
the neighborhood:

Franciscan House is located in what seemed to be an unlikely suburban neigh-

borhood of midsized two- to three-bedroom homes, mostly bi-level. The neigh-
borhood was thoroughly residential, without any neighborhood access to public
transportation, shops, services of any kind. I would guess that homes in the
neighborhood were built in the 1970s—a subdivision in the middle of nowhere
carved out of field and pasture. The house had light tan aluminum siding, a car in
the driveway, a garbage can and recycle bin neatly parked beside the driveway, a
tidy lawn, an all-season wreath on the door, and no sign whatsoever that the resi-
dence was in any way different from all the other residences on the street. There

O PA L AT F R A N C I S C A N H O U S E 43
 was no wheelchair access ramp at the front door (and none at the back), no sign
identifying the place as an assisted living facility.

Franciscan House was located in a suburb of Washington, DC, that

had a distinctly small-town flavor, with only 20,000 residents and a main
street with shops and restaurants. The house had two bathrooms, one on
the first floor, and the second upstairs, shared by the four female residents.
All but two residents shared a bedroom. Maria once told us that she
would have purchased a single-story house if she had known in advance
the problems a two-level structure would present. For example, she could
neither admit nor retain individuals who could not negotiate the stairs,
even though she did install a stair lift. This was one reason that Maria
worked diligently to preserve each resident’s health and functional capac-
ity—she wanted to retain them as residents for as long as possible.
Like Valley Glen Home, Franciscan House was licensed for eight resi-
dents and accepted public-subsidy clients. Four of the residents during our
research there received this subsidy, administered by a county agency, to
cover the basic costs of their care. Maria charged an additional monthly
fee to cover room and board; some subsidy residents used Supplemental
Security Income (SSI) payments to pay this cost, and others received sup-
port from their families. Most of the residents had mild to moderate de-
mentia, but with one exception they were physically mobile and could
dress themselves with prompting from Maria or Angelina.
In addition to Opal, there were six other residents at the time of our
first meeting. Mildred was deaf and nearly blind, and had significant de-
mentia. She did not have family; a legal representative paid her monthly
bills but did not visit her. Nancy had a diagnosis of Alzheimer’s disease
but had been stable for three years; her two daughters lived nearby and
were very much involved with their mother’s life at Franciscan House.
Christina had arrived with a diagnosis of possible malnutrition; Maria
proudly reported that, within a few months, Christina had gained 30
pounds. Lucy moved from independent senior housing after she fell and
injured herself; her granddaughter visited her each week. Tom had lived
alone after his wife died, with his son checking on him. Over time he
became increasingly confused and did not eat regular meals, so his family
decided that he needed the kind of daily supervision provided in assisted
living. Fern’s son arranged to move his mother to Franciscan House be-

44 INSIDE ASSISTED LIVING

cause she, like Tom, lived alone and was increasingly confused, possibly
due to poor nutrition. Although Fern had several children and had raised
her sister’s children, she received no visitors and rarely left the assisted
living setting. Maria complained that the family did not respond to her
requests to take Fern to the doctor and to get her medications, but the
son who had moved Fern into Franciscan House was himself in poor
health.
On most days, a sense of monotonous calm and tranquility reigned
at Franciscan House. Phillip said that the “peace” derived from familiar-
ity between Maria and the residents. During our visits, we witnessed days
when the residents were social, talking with each other and Maria or An-
gelina, and other days when everyone seemed quiet. The conversations
were never very deep, perhaps a product of dementia symptoms for many,
although people did talk of their home, family, and work memories. Over-
all, these seven residents seemed disconnected, as though they were not
fully aware that they lived in this home. On some of our visits, the living
room environment felt more like a group of people sitting in a doctor’s
office waiting room. In fact, Tom sometimes mentioned that he was wait-
ing for someone to pick him up.
Maria or Angelina occasionally led games of bingo, residents often
watched the Lawrence Welk show or other musical programming, and
Angelina liked to involve everyone in singing hymns reflective of her
Catholic faith (“Jesus Loves Me” was popular with several residents). A
mobile library unit visited every six weeks or so, and a podiatrist visited
every nine weeks to trim nails and examine feet. Other than these minor
events, each day was much like the one before. The residents had their
usual places to sit in the living and dining rooms, probably partly by their
own choice and partly because that was Maria’s way of keeping things
orderly.
Three themes seemed to define Franciscan House: the importance of
order, running a business, and the moral code “Do unto others.”

The Importance of Order

Aside from the six elderly residents seated in the living room in front of the TV
and the stair lift on the stairs leading to the second floor, this could have been

O PA L AT F R A N C I S C A N H O U S E 45
 any other American home. It was clean—so clean that the floor squeaked under-
foot. All was orderly, tidy, in place, and “ready.”

Maria expected the residents to adapt to her schedule, though she made
some minor accommodations. When asked if she would allow a resident
to sleep in until 10 a.m., she said, “No, we get them. Sometimes we do
say, ‘It’s almost quarter to nine. You better get up now,’ you know. We
just change the time a little. But when they hear the time, then they will
get up. Or we say, ‘Coffee is hot. You’re going to get down late. Coffee is
going to get cold.’ I always tell them, ‘Coffee is ready, it’s hot.’ They like
the smell of coffee.”
Routine was important to Maria, who believed it benefited the resi-
dents, especially those with cognitive impairment. When one new resident
moved in and went about his own way of doing things, including staying
up late and then calling a cab and leaving without informing her, Maria
was overwhelmed and asked him to move out after only a few days.
Another time she explained, “A bad day is when there is just . . . when
there is an accident like bowel movements—then the schedule is thrown
off.”
Maria’s sense of order and routine applied not only to the daily sched-
ule, but also to the care and medical oversight provided to Opal and the
other residents. While she took responsibility for overseeing day-to-day
care, Phillip formally evaluated each resident’s medical condition at least
every six weeks. Beyond these state-required evaluations, however, Phillip
checked in on the residents each week. On these visits, he was available
to discuss and answer Maria’s questions about each resident’s condition.
Keeping the peace in such a small space—basically a single-family
home with eight adults residing in it—was critical to maintaining order
and routine. Opal clearly challenged Maria’s sense of order and routine,
yet Maria did not ask her to move out. Keeping Opal as a resident was
not related to money, because Maria could have charged a private-pay
client much more.

Running a Business
From Maria we learned that the business of assisted living was hard work,
that it required an intimate knowledge of each resident’s condition, and

46 INSIDE ASSISTED LIVING

that understanding and following the state and county rules and regula-
tions created an added challenge for a small, solo operator. When asked
to describe “one thing” that people should understand about Franciscan
House and small group homes in general, Maria said, “Well, like in my
experience, like I have seen people come here, they think this is an easy
job. Okay, because everything seems to be so neat. All of the residents are
clean, okay. They just pass by and they say, ‘Oh, it’s easy.’ But I think it
is not as easy as they think. Because you would have to stay here and live
with them and then you would know what this really entails. If you love
this type of job, I think it is really nice. . . . I enjoy it, but there are bad
days, too. I can say like I’m not a perfect person. There are good and bad
days, but generally I’m okay. . . . It has been 13 years almost. Aside from
that, I think like people have to experience it. It’s really a different type of
work.”
Maria chose to operate a group home (and then an assisted living
residence as Maryland regulations changed) as a business decision and
found it to be a good, though challenging, way to earn money. To prepare
for opening Franciscan House, Maria and Phillip visited one assisted liv-
ing residence, applied to the state regulatory agency for a license, and in
two months became certified as providers. It was two more months before
their first two residents moved in; both of them had been diagnosed with
Alzheimer’s disease. It was not easy, as Maria explained: “So I did the job.
At nighttime I was so thankful Safeway was open for 24 hours. I went to
the grocery store at night. It was hard. It was hard. Everything was hard,
I mean. No pain, no gain. But we survived and then the kids, they went to
school.” Here she referred to the ultimate reason for her sacrifice: earning
an income that would permit her two children to attend good colleges.
Maria was acutely aware of each resident’s physical and mental sta-
tus, and she worked to keep the residents in stable health by observing
their eating habits, weight, blood pressure, and other vital signs. She
explained: “If they are healthy, it makes my job easy.” This focus on sta-
bility resulted in long-term residents at Franciscan House. Maria once
noted that the census of residents tended to turn over every three years,
and we observed this to be the case. About the residents, she said: “As
long as they eat good, I never worry. The daily routine, it’s just very stable.
I don’t know, I don’t see such a big fluctuation. I don’t know why, but it
seems that they are very stable. Maybe I’m just blessed with the right resi-

O PA L AT F R A N C I S C A N H O U S E 47
dents. It’s just that the residents that I have, even if they are up in age . . . 89,
they seem to be very stable.”
Franciscan House was licensed by the state of Maryland as a level 2
assisted living facility. To Maria, being licensed as level 2 meant that she
admitted and retained only those residents with the ability to walk to the
bathroom and stand in the shower: “When they cannot really walk to the
bathroom, or I cannot shower them, when they become so stiff that I can-
not handle it, I tell the family, it’s time”—time, that is, for the resident to
move out. However, she worked hard to maintain each resident to fore-
stall decline that would lead to a move out of the facility.
Maria’s preferred approach to her work was logical, rational, and
orderly. Visits from regulators, such as the licensing agency, were often
highly upsetting to her, in part because the different public employees who
came to her home took different approaches to interpreting the require-
ments, and Maria could not cope with this lack of predictability. She
often complained about the increase in paperwork following the adoption
of assisted living regulations. After failing to pass an annual recertification
inspection in the fall of 2002 because she did not keep “care notes” the
way a regulatory department employee wanted, she said: “I think since
the year 2000, everything has changed. All the rules, everything has
changed and we are under the umbrella of the nursing homes. Whatever
pertains to them, we have to comply, and I think it is hard on us. Before
the year 2000, the rules were not as strict, okay, like they didn’t ask for
too many things. Now we have so many paperworks. We have to send
this to the doctor. We have to do our own assessment. We didn’t have that
before. We have to have a 45-day nursing assessment and then we have
so many reports like everything has to be documented just for the record,
maybe because of so many lawsuits, I don’t know. Every little thing we
have to like write it down and send it to this form and send that form over
there. It’s too much.”
The financial side of operating this small business was also an ongo-
ing concern. Maria charged a monthly fee of $1,600 to the three private-
pay residents, a rate much lower than the national average of $2,905 for
basic services (MetLife 2005). Nancy’s daughter told us: “I mean, they
care about her. It isn’t about money at Franciscan House. I mean, how
they even do it is a mystery to me. It’s like, God, you need to charge
more!” When Fern’s son stopped paying the full monthly charge, Maria

48 INSIDE ASSISTED LIVING

told us that she would not put Fern “on the street,” but she continued
asking Fern’s son to pay the full monthly fee. A dramatic rise in the cost
of liability insurance during our research at Franciscan House and the
other assisted living residences placed another financial burden on Maria,
as she explained several times during our meetings with her.
As with most other businesses, success in operating an assisted living
facility depends on hiring and training staff. Maria preferred to have a
live-in caregiver, and she was successful in finding and retaining long-term
employees. Angelina started work two months before our fieldwork began
and remained throughout; the woman who was her predecessor at Fran-
ciscan House stayed for nearly six years.
Angelina was committed to her church and her faith. She had moved
to the United States in 1996 with an American family for whom she had
provided child care. She learned about Franciscan House through a church
friend. Angelina explained that her daily routine included rising early to
pray, then assisting two residents with a shower (a different two each
day), helping people to use the toilet, getting breakfast prepared and
served, turning on the television, making beds, doing laundry, and clean-
ing. She assisted Maria in preparing lunch and dinner, housekeeping, and
all personal care. Maria was fully responsible for completing all of the
paperwork, administering medications, and coordinating medical services
with residents’ families and physicians.
Maryland state regulations have only recently begun to require spe-
cific training for those who operate assisted living facilities. Employees
come from many fields; some are certified nurse assistants (CNAs), while
others receive on-the-job training. Assisted living managers like Maria
and Rani tend to develop their own approaches to training the people they
hire to do the bulk of the physical work. Maria did not try to teach Ange-
lina everything at once, instead introducing specific tasks over several
weeks’ time. But Maria did impress on her employees the significance of
their work. Maria once told us: “This is a big responsibility. I always tell
my help, I say, ‘I’m the one who is going to cut off my head if anything
happens to them, so please if you don’t know, you tell me. You have to
be honest and tell me anything.’ I mean it’s not impossible for them to fall.
They are right in front of you and they can trip with their toe and that’s
it, you know. So it’s not impossible.” Yet Maria worked hard to prevent
accidents, in part by maintaining a routine and stable environment.

O PA L AT F R A N C I S C A N H O U S E 49
 Do Unto Others
Maria’s Catholic faith informed her approach to life and included a strong
moral commitment to caring for others. When asked what it takes to be
good at her job, she said, “I think it’s just like some people say, it’s a call-
ing. That’s the word they use. Or it’s meant to be. I never knew I would
be in this position. Like when I came to the United States, like I told you
I’m a scientist. I just came in with no knowledge of patients, nothing. So,
I guess it’s just like more of instinct or an intuition. . . . The principle that
guides me is . . . what I want others to do unto me, I do unto them, basi-
cally. So, I hope somebody will take care of me when I get old.”
Although Maria did not refer to her residents as “family,” she knew
each one well and was especially attuned to maintaining their physical
health. She and Angelina provided the bulk of daily care, but Maria also
expected the residents’ families to assist with transportation to medical
appointments and related needs. She expressed frustration when a couple
of family members did not respond to their relative’s medical care needs.
When Fern’s family did not respond to her request to take her to the doc-
tor, Maria became exasperated because she had informed the family in
advance that she could not provide this service. Fern’s acute skin condi-
tion needed immediate treatment, yet her family did not assist, leaving
Maria to buy an over-the-counter ointment.
During one interview with us, Maria was asked to describe her top
five concerns, and she listed family responsiveness as her second issue,
after the high cost of prescription medications. Specifically, she said, “I
think residents’ families should spend more time when their parents are
getting older because they have only a few years to live. But I don’t see it
[happen] that way. I see it that, as long as somebody is taking care of the
parents, that’s it. It’s a sad thing.” Certainly some of the family members
were very involved, visiting on a weekly basis and taking the parent not
only to medical appointments but also for social outings. One of Opal’s
daughters regularly took her out to eat and to get her hair styled. On the
other hand, Mildred lacked family and left Franciscan House only to visit
her doctor once or twice annually, and Fern’s family did not take her out.
Maria called the families to give them weekly, and sometimes daily,
updates, and she expected them to be active in their parents’ lives.
Most of the family members we spoke to in connection with Francis-

50 INSIDE ASSISTED LIVING

can House residents were pleased with the care their relatives received.
The daughter of one explained that she began by looking at large facilities
but decided a small home would work best for her mother, who had de-
mentia: “I was looking for somebody who would care for my mother,
who would help bathe my mother, who would call me and tell me, my
mother has a stomach ache or my mother has a headache or my mother
has this ache. Those big homes aren’t going to do that. You’re not going
to get a phone call, unless they are dead or injured. And that’s what pro-
pelled us.” So, although Franciscan House did not provide the social
activities advertised in some of the larger assisted living settings, the small
size and the continuity of care provided by Maria were appreciated. Re-
search suggests that smaller settings benefit persons with cognitive impair-
ments (Calkins 2001; Day, Carreon, and Stump 2000).

Final Thoughts

Franciscan House is largely hidden from society, with the daily work of
caring for older persons quietly taking place within the walls of an aver-
age-looking home within a quiet suburban neighborhood. The main les-
sons to be learned from this particular setting and its culture are that
maintaining stability requires rules and routines (both internal and exter-
nal), that small homes sometimes provide “bored and care” (Dobkin
1989), and that small homes like this one seem to work especially well for
individuals with mild cognitive impairment and good physical mobility.
From both Maria and Opal we learn that assisted living requires on-
going negotiations in which rules matter but can be bent and that lifetime
patterns affect the quality of life. Maria operated a business licensed by a
state agency and monitored by county agencies, and she had to comply
with a large (and growing) set of regulatory requirements. Yet she also
followed her own moral code to “do unto others,” and this might have
influenced her decision to retain Opal despite the low economic reward
and relatively high emotional burden. Maria imposed her own standards
to run the home in a way that she thought appropriate to maintain the
health and physical function of each resident.
At our last interview with Opal in the spring of 2005, she remarked
that we would not learn anything from her “because I’m kind of dull.”

O PA L AT F R A N C I S C A N H O U S E 51
From Opal we hear that life inside a small assisted living setting can be
“the most boring life you can imagine,” but that this negative is balanced
by benefits such as an affordable place to stay, people to talk to, and as-
sistance when you need it. Despite the tedium of daily routines Opal said
she was glad that she moved to Franciscan House.
While other small homes might provide more activities than this one,
their type and quality will be constrained by the varying capacities (physi-
cal and mental) of residents and by the provider’s concerns for liability.
For example, Maria remarked that, in prior years when the current cohort
of residents were more physically and cognitively capable, she would take
them to church services, shopping, and out for lunch. Over time, Maria
increasingly worried that one of them would fall and she would be sued,
so she no longer took residents out, instead relying on families or public
transit to provide this service. Over the many days and weeks of providing
personal care to older persons, Maria and her husband came to know the
kind of person they could best care for, and they worked hard to select
individuals who would best fit the type of care they provided and then to
provide a stable and secure living environment.

Update

After nearly 15 years operating a group home, Maria felt that the time
was right for a change. Her aging parents, who lived in another state, were
beginning to need assistance, and Maria’s moral duty to “do unto others”
included attending to her own parents. Her siblings had taken the primary
responsibility thus far, and it was her turn. By now her two children were
grown. The Agbuyas were proud of their engineer daughter and physician
son; they had worked hard to provide the financial support to send them
to college. Finally, the Agbuyas decided to sell Franciscan House. Their
retirement plans include becoming certified hospice volunteers and travel-
ing to other countries to do missionary work for their church.

52 INSIDE ASSISTED LIVING

 FOUR

` Karen at Huntington Inn

K aren was the founder of “The Forum” at Huntington Inn, an un-

assuming cluster of five white plastic chairs that she talked a staff
member into placing in a wide section of the building’s long hallway. Over
time, it became the regular meeting place for four or five residents as well
as a couple of staff members. During our research, we learned that it was
the place to go to catch up on the latest facility gossip. In addition to
Karen, the regular members of The Forum included Rose, who eventually
declined (or “gave up,” as Karen said) to the point that she had to move
to a nursing home; Edith, the oldest resident at age 103; Donnie, a woman
who was disliked by nearly everyone but Karen; Lilleth, who had signifi-
cant memory loss and often wore odd layers of clothes and mismatched
shoes; and Sylvia, who also had a poor memory, but could take part in
the social commentary, bantering, and discussion of health problems that
took place daily at The Forum.
Another resident, referred to as “Mother” by both the staff and the
residents, walked by The Forum several times a day as she paced to and
from the main entry with her baby doll (the reason for her nickname), and
tried to leave through the unlocked front door. Most of the residents, and
all of the staff, loved Mother; they would get her to smile by exclaiming
over the cuteness of her “baby.” However, Mother eventually became the
source of a great deal of conflict among staff, residents, and family
members.
Karen told us she liked assisted living—“It’s great!”—even though
she sometimes took issue with the policies, the administration, and the
food. A resident of 10 months at the time we met her in 2003, she described
Huntington Inn as her “home” and, when faced with being moved to a

53
nursing home because she had spent all of her savings, said, “I would hate
to leave here.”
In this chapter, we introduce Karen and Huntington Inn, and then
provide details about daily life at this moderate-sized, rural assisted living
residence. Through Karen’s story, we learn how three major categories of
change—finances, health, and public policies—affect the lives of those
who live and work in this type of setting.

Introducing Karen

Karen, like many women in her generation (she was born in 1928), gradu-
ated from high school, married, then stayed home to raise her son. She
took part-time low-wage jobs, such as school bus driver, dress salesperson,
and cashier, while her only child, Mark, attended school.
Her favorite part-time job was as a veterinary assistant; Karen loved
animals and said that she couldn’t believe how lucky she had been to get
paid for working with and cleaning up after them. When we interviewed
Mark, he brought out a newspaper clipping from 1949 that included
Karen’s picture, mouth open wide, with a caption that read, “SPCA sym-
pathizer.” Karen sometimes talked about her desire to have a cat in her
room at Huntington Inn, though she knew that it would be difficult to
care for one. Besides, it was against the rules. However, the administrator
had arranged for a volunteer pet program in which a woman visited about
once a month with her two dogs. Some of the employees occasionally
brought their own pets to visit on their days off work. Karen and other
residents truly appreciated and looked forward to these visits.
After 52 years of what she described as an “abusive” marriage, Karen
left her husband. (Mark said that the marriage was never physically abu-
sive, only verbally so, and that the abuse went in both directions. He re-
mained close to both his mother and father.) After the divorce, Karen lived
for a short time with Mark but didn’t want to intrude on his “bachelor
lifestyle.” Mark had never married, though he had a long-time girlfriend
in a nearby city with whom he spent many weekends. During the short
time that Karen lived at Mark’s home, she fell and broke her hip. Though
she did well in rehabilitation, Karen and Mark agreed that she needed to

54 INSIDE ASSISTED LIVING

live in a place that gave her the social interaction and daily physical assis-
tance she needed and where she could have her own space.
They considered Karen’s situation: she didn’t need ongoing nursing
care and could independently manage the oxygen supplies she needed for
emphysema. She could heat prepared food in a microwave or make a
sandwich, but she could no longer drive. Her limited lung capacity made
it difficult for her to take a shower or walk more than a few feet without
assistance. It took her a long time to get dressed because she frequently
had to stop to rest. Before moving to assisted living, she managed her own
medications.
With the help of a friend of Mark’s, they found Huntington Inn,
located less than five miles away from Mark’s apartment. Karen did not
see her new home before moving in because she was in a rehabilitation
center recovering from hip surgery. About her move she said, “When I
came here from the hospital, I came at nine o’clock at night. Hadn’t seen
this place or knew about it or anything else. They brought me in an ambu-
lance, took me out of the ambulance on a gurney. Mr. Hill was at the door
waiting for us and he said, ‘Put her in 18’ and they rolled the gurney up
the hall and put me in 18 and that was it.”
Mr. Hill, the owner and “administrator” (his term) of Huntington
Inn, took a hands-on approach to operating the facility. Most days he
wore blue denim pants and a polo shirt because he never knew if he would
be assisting a resident in the shower, tinkering with the laundry machine,
or dealing with a plugged toilet—in addition to the paperwork, contacts
with family members, and oversight of staff that were part of his daily
work. He kept a dress shirt and a few ties in his office in case he was called
to a meeting off site.
Mr. Hill’s prior experience as a nursing home administrator influenced
the way he operated Huntington Inn. He was used to the many federal
regulations that govern nursing home operations and found the state
oversight of the assisted living facility to be relatively light. He described
his approach to running this family business as involving more interaction
with residents than was the case in the nursing home. He said, “If I’m
going to be the administrator I have to be accessible. This is not the nurs-
ing home level where they are basically bed bound and things like that.
These people have a mind and are aware and I should be accessible. I

K A R E N AT H U N T I N G TO N I N N 55
think it has worked.” We often saw him joking with residents, including
Karen, and he was on a first-name basis with their families.
Karen and Mark agreed that Huntington Inn was a good fit with one
exception—she could afford to live there for only about two years based
on her limited income and savings. Before she moved in, Mr. Hill explained
to Mark that the state had a Medicaid “waiver” program that paid for
assisted living care and that he would help Karen apply for this program
a few months before her money ran out. Unfortunately, this happened at
the wrong time, when the state’s allotment of Medicaid waiver resources
had been exhausted by a large and unmet demand.
Karen was generally pragmatic and resourceful—she was one of the
only women at Huntington Inn who did not have her hair “done” by the
beautician who visited once a week, and she furnished her room with a
“perfectly good” bureau found discarded by a trash dumpster near her
son’s home—and she spoke her mind and stood up for her rights. She be-
lieved in playing by the rules, but the changes in the Medicaid program,
which she perceived as unfair, prompted her to action.

Getting to Know Huntington Inn

Overall, this assisted living was not a place that I liked to spend a lot of time, and I
was always glad to leave. I found the physical environment depressing—every-
thing seemed brown, the building was hidden in a wooded, rural location with
no sidewalks. In addition, the staff members were never welcoming, though most
were willing to answer my questions when asked. Most of the residents were
friendly, but many of them had memory loss and did not recall who I was from
week to week, even though I visited weekly for nearly 11 months.

A typical research visit to Huntington Inn would last for three to six
hours. We learned to avoid the late afternoons because many of the resi-
dents were either napping or watching Dr. Phil, and no one wanted to
turn off the television to talk if the doctor was holding court. Occasionally
a group of three or four women took part in an event organized by an
on-again off-again “activities director,” but the most common activities
we worked around to interview the people who lived at Huntington Inn
were television watching, napping, dining, and medical appointments.

56 INSIDE ASSISTED LIVING

 When you enter someone’s home for the first time, you become aware
of its differences from and similarities to the way that you live. There are
different odors of food, pets, cleaning products, and various bodily func-
tions. The meals that are prepared and served might look and taste differ-
ent from what you are used to. The style and layout of the furnishings
may not be to your liking. Our sense of Huntington Inn was that it re-
flected, not the cruise ship model of assisted living, but a freighter that
carries the heavy load of cargo that no one else can, or will, accept. Mr.
Hill told us that he was known by local health and social service providers
for taking on “difficult cases,” including individuals with chronic mental
illness who presented challenging behaviors.
Mr. Hill purchased the building in 1988 from its prior owner after
working as a licensed nursing home administrator in another state. For
12 years he operated Huntington Inn under the state’s domiciliary care
rules. In 2000, Mr. Hill, like Rani, Maria, and hundreds of other op-
erators in the state, applied for the state’s new assisted living licensure
category.
Huntington Inn is located in a rural region where the primary indus-
try is agriculture and a major tourist attraction is a museum of farming.
The building sits on a gentle hillside, and because the gravel entry drive
is at a higher elevation than the building, the dominant view on approach
is of the brown metal Mansard-style roof edging. Nearby, though not
visible from Huntington Inn, is a large reservoir used recreationally for
fishing. A covered walkway shelters the front door, and often one or two
staff members shared a smoke break here with a resident named Ron, who
often sat outside quietly puffing on his pipe.
An interior sitting area at the front entry had been remodeled with
upholstered furniture in floral prints and silk plants, but the pale pink
paint did not disguise the concrete block walls. The furnishings in the
dining room, as well as the bed frames, bureaus, and bedside tables pro-
vided in the resident rooms, might well have been there since 1972, when
the building was constructed. For several months, a yellow mop bucket
was positioned under a leak in the dining room ceiling. Throughout the
building, the lower parts of the walls, as well as most doorways, were
marred with black scuff marks from the many wheelchairs and walkers
that had rubbed against them over the years. All in all, the physical envi-
ronment was dowdy at best, though one enthusiastic staff member posted

K A R E N AT H U N T I N G TO N I N N 57
a monthly calendar on a hallway wall decorated with signs of the sea-
son—brightly colored paper leaves in the fall, pink hearts for Valentine’s
Day, and green shamrocks for St. Patrick’s Day.
Mr. Hill designated most of the rooms as single occupancy, explaining
that people prefer a private room if they can afford it. Even though the
facility was licensed for 60 beds, usually only 30 to 35 individuals resided
there at one time, including a woman who stayed for single months of
respite several times a year. Each resident room had a microwave oven
and a small refrigerator, a closet, and a private half-bath with a sink and
a toilet. The rooms’ furnishings included a bed and bureau, and many
residents brought personal items from home such as small collectibles,
pictures, television sets, and in rare cases, large antique furniture. At least
two residents, both with a lifelong diagnosis of mental illness, had spartan
rooms, devoid of personal objects other than clothing. Because of the
wooded area surrounding the building, some of the rooms were dark, and
most had an institutional feel, reflective of the era in which the facility was
built.
Huntington Inn was licensed to provide the highest level of care per-
mitted by the state. However, Mr. Hill required that all residents be capa-
ble of getting to the central dining room with minimal assistance, by
which he meant that the resident should be able to respond to a verbal
reminder or, at most, require a staff member to walk with. Residents who
used wheelchairs were expected to propel themselves to the dining room.
Mr. Hill gave two reasons for this rule: first, residents with limited mobil-
ity were difficult for his staff to manage (i.e., the staff worried about get-
ting back injuries while lifting or positioning residents), and second, mo-
bility was required to use the shared, centrally located shower room,
another vestige of the building’s age, which was not disabled-accessible.
A small locked and alarmed “special care” unit was designated for
individuals with dementia. This unit was in the basement along with the
commercial laundry room and was accessed via an elevator operated with
a key. The unit consisted of one hallway with six resident rooms, a small
dining/television room, and a shower room. Only staff members and fam-
ily visitors traveled between the two floors of Huntington Inn; residents
from the lower unit went upstairs only on the rare occasions that they left
Huntington Inn for a medical appointment or social event. Upstairs resi-
dents did not go to the lower level at all.

58 INSIDE ASSISTED LIVING

 Huntington Inn’s physical structure predated design standards for
disabled accessibility, so although each room had a bathroom, the bath-
rooms did not accommodate wheelchairs. The building had a fire safety
sprinkler system, an impressive commercial kitchen, and a well-stocked
pantry. The resident rooms did not have emergency response systems; if
someone fell or needed assistance, the resident had to shout, bang on the
side of a trash can to attract help (as one resident who fell in her bathroom
told us she did), or phone the front desk.
A one-way public address system allowed Mr. Hill to make announce-
ments and to track down staff members. While talking with a resident,
we might be startled by the sudden intrusion of Mr. Hill’s amplified voice
saying, “Amber, please call the front office. Amber, please call the front
office. Thank you.” Another technological adaptation that Mr. Hill relied
on heavily was a series of video cameras mounted in the hallways that
monitored all exits. As he sat at his desk, taking phone calls from vendors,
prospective clients, family members, and physicians, Mr. Hill was able to
view five small television monitors that projected the scenes of residents,
staff, and visitors moving through the hallways.
Mr. Hill, like managers in family-owned assisted living settings of
similar size, wore many hats. He was a hands-on administrator who also
performed tasks of a personal care assistant if necessary, a social worker
(determining Medicaid eligibility, meeting with family members, planning
discharges and placements in nursing homes), and a skilled laborer who
did routine building maintenance. From his years of experience in long-
term care, he was knowledgeable and politically active in that field (he
had testified at state Senate hearings, and his own long-term care language
had been used in state legislation), and he was highly responsive to his
employees.
Mr. Hill’s personal qualities had a positive effect on his employees, as
was evident in a low staff turnover rate. According to him, nearly 90
percent of his staff had worked at Huntington Inn for more than five
years, including three who had been there for 12 years. Several of the staff
members were related by blood or marriage, and his assistant manager
had literally grown up at the facility, beginning as a direct care worker
when she was a teenager. Mr. Hill described his strategy for selecting
good-quality staff: “I see how they walk by the residents. I see if they stop
and say ‘Hi’ to them. I see if they are the sort of ‘shun them’ type and walk

K A R E N AT H U N T I N G TO N I N N 59
around them. I pick up a lot from that, and with my sixth sense, and I
guess my years of experience helps quite a bit.”
One Christmas his employees gave him a plaque engraved with “Num-
ber One Boss,” and this, along with many certificates of recognition from
local organizations, hung on his office wall. In his words, his employees
liked working for him because “I try to listen to the people. I try to make
it relaxing. I don’t make it sterile where they have to wear whites [hospital
or nursing home uniforms] and things like that. I try to have them come
in, in street clothes—to sort of blend in. You can see—as the administrator
I’m in jeans a lot—and that’s because I’m also into toilets—when they
stuff up—but overall, that’s pretty much what I usually try to do.”

Life at Huntington Inn

I enjoyed Karen and typically stopped by her room on my visits to Huntington

Inn. . . . Karen always recalled me and would greet me with a cheerful, “Hello, doll”
or “How’s it goin’, hon?” There were days, though, when Karen was sad or feeling
poorly, a combination of physical pain, anxiety, and shortness of breath. On these
days, her voice was flat and she might tell me that she wasn’t up to company.
Other times she might be napping or at one of several doctors’ visits. I missed her
on the days that she was not available to talk.

From Karen, we learned that life at Huntington Inn is bounded by rules,

but that rules can be negotiated or broken; that declining health and
finances are an ongoing concern; and that change is a constant dimension
of life. Some changes can be anticipated and planned for, some happen
out of the blue, and still others occur gradually.
Karen’s room, decorated with American flags and ceramic sculptures
of eagles, was located a little more than halfway down the long, dimly lit
hallway from the dining room on the main floor. Though many residents
kept the doors to their rooms closed, Karen chose to keep hers open, in
part because it provided better ventilation for her oxygen compressor, and
because she liked to see who was going by. She enjoyed company and
often called out to passers-by.
Mr. Hill once described himself as a “live and let live” kind of guy.

60 INSIDE ASSISTED LIVING

Although it seemed to us that Huntington Inn was organized by rules,
both internal and external, when one researcher asked Mr. Hill about his
“house rules” he asked what the researcher meant, then said he didn’t
really have rules. Still, we learned about many expectations that rose to
the level of rules during our fieldwork. These included the expectation
that residents would wear street clothes (rather than bed clothes or a
housecoat) to the dining room and that they would not use vulgar lan-
guage. (Mr. Hill once admonished Karen for her liberal use of swear
words.) In addition, all residents were required to receive assistance from
a staff member to adjust the water temperature and get into and out of the
shower in the communal shower room. Any residents who “wandered”
had to move downstairs to the locked unit, medications for all residents
were centrally stored and administered by the staff, and food from the
dining room was not to be taken back to residents’ rooms. Perhaps Mr.
Hill didn’t think of these as “rules” because he viewed them as practical
necessities for operating an assisted living residence or because his nursing
home experience led him to think of rules as externally imposed regula-
tions. Over time, we learned that while there many “house rules,” there
were also exceptions to these rules.
Both Mr. Hill and the staff told residents that the assisted living reg-
ulations required all residents to receive assistance with a shower. The
Maryland regulations for assisted living do not require this, though nurs-
ing home regulations do. (Most likely this small fib provided a convenient
excuse to use with residents who complained.) Some of the residents
openly resented this requirement, but Karen was pragmatic about it: “I
feel as though I can do it myself. But then I’m just independent and I think
I can do everything myself . . . but if I want to be really rational—I think
I still need assistance.” In contrast, Donnie, a woman of 69, complained
that she did not like that a staff person entered the shower room with
her—“but I can’t do anything about it.”
Despite this global requirement, two residents (one male, one female)
were exempt; they each had a mental health diagnosis. It was difficult as
an outside observer to discern the difference in physical functioning be-
tween Donnie, for example, and Ruth, the one woman who was permitted
to shower on her own. When asked, staff members provided a range of
reasons, including that Donnie “needed” help, that it was “required,”

K A R E N AT H U N T I N G TO N I N N 61
that the water temperature was difficult to adjust, and that the shower
stall was difficult to step into and out of, leading to concerns about a
potential injury.
Another Huntington Inn house rule required that residents receive
assistance with all medications and that the staff keep all medications in
a central location. When some residents complained about this, they were
told that it was a state rule. (Actually, state regulations permit assisted
living residents to self-manage their medications if a physician indicates
that the individual is capable of doing so. In such cases, residents must
keep medications in a locked storage compartment in their own rooms.)
Karen did not have a problem with the staff storing and administering
medications because she took such a large number and type that she did
not feel confident in managing them herself. Another resident, a retired
nurse named Marge, described how she felt about the loss of control over
her own medications: “Before you came in here, you had a brain, and you
left your brain at the door when you arrived. And now your brain no
longer functions. So that takes away independence on my part, you know,
it makes me more dependent.”
Another house rule prevented residents from taking food from the
dining room back to their rooms, even though they had “kitchenettes”
with a small refrigerator and a microwave. Again, the staff blamed this
rule on state regulations, though no such provision exists. Residents were
permitted to keep food brought in from outside the facility, but Mr. Hill
required the staff to check that no perishable food had spoiled. The house-
keeping staff regularly removed fruit they deemed as overly ripe—a prac-
tical strategy for preventing insects and rodents, but possibly an overly
intrusive action into the “homes” of these residents.
Despite the strictness of dining room rules, there were circumstances
in which residents were permitted to eat meals in their rooms. If someone
was too sick to come to the dining room, it was possible to get a tray
delivered from the kitchen (for no additional charge). Karen once com-
plained that the staff “don’t like to do it” because they don’t want resi-
dents getting used to this kind of service. She said, “This is assisted living,
so people should be able to go to the dining room.”
Karen frequently ate meals comprised of food brought to her by her
son because she did not like the food prepared in the Huntington Inn
kitchen. She was especially offended by the way that food was presented—

62 INSIDE ASSISTED LIVING

“glop,” according to her. When she had prepared meals, she had always
made sure that the food looked good on the plate. Each day Karen would
ask a staff member what kind of food was being served, and if she wasn’t
interested, she would say, “No, thanks!” or “I’m not coming” and would
instead heat canned soup or stew. Mark made certain that his mother was
stocked with canned foods, crackers, and soft drinks, and he occasionally
brought a home-cooked meal or took her out for lunch.
For someone like Karen, who had worked hard at low-wage jobs her
entire life, living at Huntington Inn felt almost glamorous: “It feels like
home with servants. I can do what I want to in my room. It’s just anything
goes here.” Some assisted living settings will not accept a person reliant
on oxygen, but Karen, who was capable of managing it herself, presented
no demands on the staff for extra attention. It is likely that if Karen had
had any type of cognitive impairment, this arrangement would not have
worked, either at Huntington Inn or at almost any other assisted living
residence (Chapin and Dobbs-Kepper 2001).
Like many of the other residents, Karen used a walker or wheelchair
to move around her room and the building. As already mentioned, Mr.
Hill required that residents be capable of independently transferring to
and from a wheelchair and that they get to the dining room without staff
assistance other than the occasional verbal reminder. He described limited
mobility as a “red flag” issue when determining whether to admit or re-
tain a resident. Resident mobility was a major issue because of the staff:
Huntington Inn had only a small number of direct care staff working each
shift, and most of them raised concerns about heavy lifting that might
result in back injury. In fact, several of them told Mr. Hill that they would
quit if they had to lift heavy residents, and Mr. Hill agreed that it was
more desirable to maintain his staff than to keep a resident, especially
given the demand for affordably priced assisted living facilities like Hun-
tington Inn.
We observed how one resident, Martha, declined over a period of
several months. Technically she was capable of walking and transferring
to and from a wheelchair, but she had fallen several times and, because of
her weight and size, it took two to three staff members to lift her from the
floor. The staff complained to Mr. Hill that Martha should leave, but he
hesitated, instead suggesting physical therapy and weight loss. A compli-
cating factor, however, was Martha’s incontinence. Not only did she refuse

K A R E N AT H U N T I N G TO N I N N 63
to wear pads or briefs, but also she would urinate into containers rather
than using the toilet, which, in her opinion, sat too low to use without
extreme difficulty. She used empty food containers and plant buckets for
this purpose and had spilled the contents onto the floor on more than one
occasion. Her room and the hallway adjacent to it reeked of urine.
The staff, residents, and their families complained to Mr. Hill, yet he
tried to make the situation work because he knew that no other assisted
living facility would accept someone with Martha’s complex problems.
He asked Martha’s son to intervene, and although the son tried, he could
not change her behavior. Mr. Hill asked a geriatric psychiatrist who had
a consultant relationship with Huntington Inn to evaluate Martha; the
assessment suggested mild dementia and a possible personality disorder,
but no solution. Finally, Mr. Hill asked Martha to move and helped her
locate a small group home. He complained that the administrator of that
home, a nurse, had immediately placed a catheter into Martha’s bladder
as a solution to her toileting behaviors. He did not believe it appropriate
to use such a medical solution. The carpet in Martha’s former room had
to be replaced, and the concrete floor underneath had to be treated with
an industrial cleaner. Still, it was weeks before the odor dissipated.
Despite having implemented a large set of house rules that were spo-
radically altered, Mr. Hill was well liked and respected by the majority of
residents, their family members, and the staff. They found him to be help-
ful, supportive, and knowledgeable, especially about all matters bureau-
cratic. He knew how to work the system when it came to medical insur-
ance, Medicaid, specialist referrals, nursing home placements, and hospital
discharge, in part because of his community connections.

Community Connections
Mr. Hill maintained a professional relationship with the county aging
services department, two regional hospitals, several physicians and related
therapists, and two nursing homes. When a Huntington Inn resident had
to go to a nursing home for postoperative care or rehabilitation, he would
visit that individual in the nursing home to assess whether or not he or
she would be able to return to the assisted living residence. As we describe
in the following section, Karen’s extensive medical ailments and treat-
ments required collaboration between her, her son, multiple physicians

64 INSIDE ASSISTED LIVING

and surgeons, Mr. Hill, the direct care staff at Huntington Inn, and both
public and private insurance providers. Karen’s son and Mr. Hill took the
lead in managing the complex array of individuals, organizations, and
regulations that overlapped in her medical care.
When compared to other assisted living providers, Mr. Hill had an
unusual relationship with medical service providers. He not only arranged
for a physician group and psychiatrist to make regular visits to see any
resident who wanted in-home visits, but also coordinated with a lengthy
list of mobile medical services such that, on a typical day, in addition to
the regular staff, a physician, a physical therapist, a counselor, and/or a
mobile X-ray technician might be on hand. These services were important
in a rural location with limited public transportation. In addition, he as-
sisted with Medicare billing. Several residents and their families men-
tioned these services as a reason that they appreciated Huntington Inn.

Changing Finances
Responding to a question at our first meeting, Mr. Hill said he accepted
Medicaid payments on behalf of clients because serving lower-income
individuals was part of his mission. He went on to explain that the Med-
icaid waiver program was new to the state and that there were many
uncertainties about it, including whether the number of slots (i.e., indi-
viduals receiving a subsidy) in the program would be expanded to meet
demand.1 “The climate is not good to do the expansion of another 1,000
slots,” he remarked. “We are hoping that they will expand to another
1,000 because . . . in the long run it has saved people from going into
nursing homes prematurely because they didn’t have the money to subsist
in assisted living. . . . And also if they can subsist in assisted living, it is
better for them. If they [the state] do not fill the additional 1,000 slots,
then what’s going to happen very quickly is there will be a waiting list
. . . and I don’t know what will happen at that point.”
During our time at Huntington Inn, Karen’s finances declined to the
level that she qualified for Medicaid, but by the time this occurred, the
“wait list situation” that Mr. Hill feared had occurred. When Karen ran
out of money, the state’s allotment of Medicaid waiver slots was full, so
her only option was to go to a nursing home or attempt to locate a facility
(most likely a small one) that would be willing to accept Supplemental

K A R E N AT H U N T I N G TO N I N N 65
Security Income (SSI). She was used to modest means, saying that she was
“born poor” and grew up in a “Baltimore ghetto.” Three months before
she would “spend down” (a bureaucratic phrase to describe the process of
becoming financially impoverished enough to qualify for public subsidies)
to the Medicaid-eligible income level, she said, “I’m a little bit worried
because my money is running out and something about getting a—I don’t
know anything about this stuff; my son takes care of it—but something
about getting a waiver and going on social services, and now they say
they’re not giving waivers. And I said, ‘Well great, what happens to me
now?’ Now I got two things to worry me.”
The second worry was a lump she had discovered in her right breast.
Her doctor had examined the lump and recommended a mammogram.
Mr. Hill arranged for a mobile mammography unit to come to Hunting-
ton Inn. Before receiving what turned out to be a diagnosis of cancer,
Karen explained that she was more worried about where she would live
than about having cancer: “I’m not worried about [the mammogram],
because what’s going to be is going to be. I have no control over that. God
grant me serenity to accept the things I cannot change. But I do worry
about where am I going to live? You know, that worries me, because I like
it here. I don’t know what’s going to happen, but we’ll see.”
Karen had a strong sense of what is fair and right in the world, and
after being told that the previously described waivers were not available,
she said, “That’s not fair; they take all your money and then tell you it
can’t be done. That’s hittin’ below the belt.” Although she relied on her
son and Mr. Hill to negotiate on her behalf, she took action by sending a
letter explaining her case to the governor, a state senator, and the county
aging services department. Staff from the county agency received and re-
sponded to this letter by meeting with Mr. Hill about how to address
Karen’s situation.
Mr. Hill arranged for Karen to enter a nursing home for one month
and apply for a waiver slot from there. He worked with county agency
staff to develop this plan because he knew that the state gave priority to
nursing home residents who were capable of moving into assisted living
facilities. Karen would need to stay in the nursing home for at least 30
days under this plan, but it was the best that could be done given the
circumstances. Mr. Hill agreed to save her room for her, even though he
would lose one or more months of rent. Karen’s surgeon scheduled her

66 INSIDE ASSISTED LIVING

mastectomy to occur during this time, so that her nursing home stay
would coincide with the spend-down period.
Karen told several other residents and staff members about her change
in finances and impending move out of Huntington Inn. Her friend Don-
nie told us, “I have this one friend in here—her name is Karen but she’s
leaving and she’s going to a nursing home because she is running out of
money. . . . She’s upset, and I feel bad for her but there ain’t nothing I can
do. It might happen to me someday. This whole thing scares me. You
know, you never know what your future is going to be.”
During this time of financial uncertainty, both Karen and Mark spec-
ulated about possible alternatives to living at Huntington Inn. Karen
hated paying $2,000 a month, and she wondered where else and how she
might live outside of Huntington Inn. Mark considered renting a large
apartment where Karen and two or three other women could live together,
with him providing support in the form of groceries and transportation.
Whether or not Karen “needed” assisted living was a constant topic of
debate, but the question was answered to Karen and Mark’s satisfaction
by a county case manager who assessed Karen at Huntington Inn to deter-
mine whether she qualified for nursing home placement. Mark explained,
“The lady that came in and evaluated her at the assisted living said there’s
no way she could live alone.” Even though Karen had an independent
spirit and could do many things for herself, she, like several other resi-
dents, experienced many declines in health, both acute and chronic, dur-
ing her months at Huntington Inn.

Changing Health
Karen was in many ways like other Huntington Inn residents—female, a
mother, Caucasian, and proudly blue collar. At 75, she was relatively young,
but like the others she had multiple chronic health conditions, including
a hip fracture in the month before she moved in, as well as emphysema,
cancer, anxiety, clinical depression, and macular degeneration.
When she had moved into Huntington Inn a few months before we
met her, she came directly from a nursing home, where she had received
physical therapy following hip surgery. For the first year that she lived at
Huntington Inn, Karen’s health was stable, despite some minor illnesses
and a bout of depression that was treated with medications and coun-

K A R E N AT H U N T I N G TO N I N N 67
seling. During her second year, she experienced several changes in her
health that required hospitalizations, nursing home admissions, labora-
tory work, and multiple medication adjustments.
Karen entered Mt. Pleasant Nursing Center with the hope that her
stay would last for 30 days, enough time for her to have the mastectomy,
recover, and apply for the Medicaid waiver that would allow her to return
to Huntington Inn. We visited on her second day at Mt. Pleasant and
found her in good spirits. She was in a four-bed room, though one of the
beds was vacant. As we visited, one of her roommates slept and the other
one appeared to stare into space. When asked if the nursing home was
different than she expected she said, “Yes. My mother-in-law was in a
home and it smelled like urine. When Mark brought me in [here], and we
came out of the elevator, there was no smell.” She nodded her head toward
one of her roommates and said, “She had a BM in bed, they came and
changed her right away, and there was that smell, but they took care of
it. It wasn’t what I expected, far, far from it. This is a nice place. They
should all be like this.”
Karen said the staff had been wonderful (“They can’t do enough for
you”), that the food was excellent, and that the dietician had promised to
bring her own Yorkshire terrier for a visit. During the hour that we vis-
ited, several staff members entered the room. One came in with an adult
diaper in hand and closed the “privacy curtain” surrounding the room-
mate’s bed, the unit manager asked if Karen’s additional oxygen supplies
had arrived (they had not), a maintenance person stopped by to fit an
oxygen tank holder to her wheelchair, and a kitchen staff person came in
to clear lunch trays. The hallway, visible from Karen’s bed, was filled with
medication carts, food carts, cleaning crews, and staff wearing a variety
of uniforms. The public address system seemed to be in constant use to
page employees and direct them to provide assistance in various resident
rooms. Despite all of this activity, Karen said that she had slept well her
first night, probably because of the antianxiety medication she requested
and received. Asked if the lack of privacy bothered her, she said that in
the nursing home, “modesty’s ridiculous” because “what the hell, we’re
all in the same boat.”
Karen returned to Huntington Inn after nearly five weeks at the nurs-
ing home. A couple of weeks after her return, she passed out, was trans-
ported to a hospital, and was diagnosed with a collapsed lung. She re-

68 INSIDE ASSISTED LIVING

turned again to Huntington Inn, but after a few weeks had another
collapse and acute disorientation when she didn’t recognize others or
where she was for several hours. After a week in the hospital she was sent
to yet another nursing home, this time for physical therapy. Three other
former Huntington Inn residents were also at this nursing home, called
Meadow Hill Rehab Center. Once again, we visited to see how she was
doing. Karen was not as positive about Meadow Hill as she had been
about Mt. Pleasant, and she was anxious to return home to Huntington
Inn. She told me that Mr. Hill had stopped by the day before and encour-
aged her to get stronger so that she could independently get from her
room to the dining room. When we asked how she felt, she said that “the
bridge has fallen out from under me” and that “if I stay here till I die, big
friggin’ deal.” But she did not die; she returned to Huntington Inn after a
seven-week stay. A short time later another member of our research team
asked Karen whether Huntington Inn felt like home to her and she said,
“Yes. I can mingle with my, the ones that live here with me, play games,
and in warm weather we can go out to a beautiful patio. It’s just anything
goes here. The staff is just like your next-door neighbors. They’re real
friendly, you know. You kid with them. I really like it here. You can’t
compare this with the other [referring to a nursing home].” Although
Karen had good days, her health continued to decline. Mark complained
that she refused his offers to take her out to lunch, even to her favorite
fast-food restaurants. Karen responded that she lacked both the strength
and the will.
Over the months of fieldwork at Huntington Inn, we also witnessed
health changes in several other residents. These changes included some
improvements in physical and mental health, but more frequently change
involved decline, both sudden and gradual. Living in a licensed setting like
this one meant that health was an ongoing concern, a topic of conversa-
tion among all involved, including residents, family members, staff, and
the various health and social service providers who routinely visited Hun-
tington Inn.
Karen was a good source of information about health concerns, and
not only her own. She was sociable and got her information from a variety
of sources, including other residents, their family members, and the staff.
During one conversation, she told us about the interactions that she and
others in The Forum had with Ms. Frannie, a woman who had resided at

K A R E N AT H U N T I N G TO N I N N 69
Huntington Inn for only two months: “She’s also got a brain tumor. I
guess it’s inoperable. She got really bad. She’d come down the hall—
sometimes she’d come down the hall, sit with us—she’d bring a box of
candy and offer it to us. She was so nice. And when she’d get paranoid—
she’d come down and she’d say somebody’s out to get her. And we’d say,
‘Sit down with us,’ and she’d say, ‘No, you’re down here planning to kill
me,’ and we had a hell of a time trying to convince her no. And I felt so
sorry for her. And she got real bad—so they put her down on first [the
basement-level dementia care unit].”
About another resident, Karen explained that the woman would not
return from the nursing home because “she’s lost her will to live.” Still an-
other had had a stroke and could no longer walk. Philosophical at times,
she explained, “Yeah, you see them come and you see them go. And you
see them fail. You can watch them start to fail. Maria is starting to fail.
She’s fallen twice now in a month and—she come in the room the other
day [acting oddly] and I thought, what in the hell’s wrong with her?”
One of the more complicated cases involved “Mother,” the woman
with significant dementia who carried a doll. Mr. Hill wanted to move
Mother to the basement unit because she attempted to leave Huntington
Inn on a regular basis. One time she had walked about half a mile to a
two-lane highway, where she had been picked up by a police officer. How-
ever, Mr. Hill’s relocation plan was resisted by Mother’s family and the
direct care staff, who had known her for a long time and did not want to
see her sent “down there.” For an outsider this resistance was difficult to
understand because the basement unit did not feel measurably different
from the main floor, and Mother would have been prevented from wan-
dering out of a locked unit, increasing her safety and diminishing the
oversight required of the staff. A few of the residents complained about
Mother because she entered their rooms and either refused to leave or
tried to take their clothing or other personal items. Donnie, in particular,
had no tolerance for Mother, and what started as rude nonverbal gestures
between the two women eventually deteriorated to a physical brawl. For-
tunately, neither woman was seriously injured. Donnie was furious be-
cause Mr. Hill defended Mother, even though that “crazy” woman had
been in Donnie’s room, but Mr. Hill countered that Donnie should be
more understanding.
When we asked Mr. Hill how he determined when it was time for a

70 INSIDE ASSISTED LIVING

resident to move to either the basement unit or a nursing home, he said,
“I’m not trying to pat myself on the back—but because of my experience,
I’m pretty good at telling when a person is beyond what we can do and
needs a different level of care—for example, nursing home—so I’m pretty
good with doing it on my own, but I do . . . I keep an open door policy
with the families and if there is something to discuss, we will discuss it
and so they pretty well know as their relative or loved one is slipping and
getting to the point where, for the most part, they may need another level
of care. My years of experience—and also my background in nursing
homes—helps me to know the differences and what we can do and where
we really have to draw the line.”
The difference between nursing homes and assisted living homes is
a topic familiar to anyone who has worked in long-term care. As Mr.
Hill told us, and as we learn from the experience of Karen and other
residents, there often comes a time when an individual requires nursing
home care for financial or medical reasons. Sometimes the line between
nursing homes and assisted living facilities is clear, but increasingly it is
blurring. For example, Karen died at Huntington Inn under hospice care.
In some views, end-of-life care might seem more like a nursing home func-
tion than one suitable for assisted living. In the final chapters of this book,
we talk more about the complexities that arise in the larger world of
senior housing.

Final Thoughts

Resident Changes

Residents came and went at Huntington Inn. One resident stayed only
three days before the physician associated with Huntington Inn identified
blood clots in her legs that required surgery; afterwards she did not recover
sufficient strength to return. Another person went to a nursing home and
stayed for several months, but contrary to everyone’s expectations, she
came back. There were changes (more negative than positive but of both
kinds) in physical health, cognitive ability, and financial status. Sometimes
a resident’s family member initiated relocation, moving the relative to a
place that was closer to home, less expensive, or perceived to be of better
quality.

K A R E N AT H U N T I N G TO N I N N 71
 When we began our study at Huntington Inn in January 2003, there
were 33 residents. During the next 11 months, 14 people moved out, 3
people changed rooms, 11 new people moved in, and 3 died. At a follow-
up visit in 2006, we learned that 12 of the original group we met had since
died. So the resident population is not stable over the long term, with both
short-term interruptions for hospital and rehabilitation visits and regular
turnover.

Regulations
The rules and regulations of assisted living, both those set by the facility
and those mandated by the state, provided the subtext of life in Hunting-
ton Inn. Like Valley Glen and Franciscan House, this assisted living setting
predated the state’s regulations. Mr. Hill’s prior experience in nursing
home administration provided ballast as he rode the new wave of assisted
living. When he began operating Huntington Inn, it was classified as a
domiciliary care facility, a type of group residence that was not licensed
by the state (although subject to various state and local rules and codes).
Over time, Huntington Inn weathered changes in state regulations, public
financing, new licensure categories, and competition from newer and pret-
tier places.
Mr. Hill took an active role in two senior housing trade organizations
and in policy workshops organized by a state agency. He explained that
he wanted to represent the interests of the “folks” from his rural commu-
nity—namely, low- to moderate-income individuals. He was articulate
about the need to keep assisted living regulations flexible and to make
certain that the state did not create regulations that would turn these set-
tings into nursing facilities. In contrast to Mr. Hill’s message, the public
agency that licenses assisted living institutions in Maryland heard from
senior advocates and medical professionals about the need for additional
regulatory oversight.
One issue debated in a series of public policy forums was whether or
not to require on-site licensed nursing staff. Mr. Hill regularly attended
these meetings and argued against the need for on-site nursing at facilities
like his; he explained that if he had to hire a nurse for 40 hours a week,
he’d have to raise the fees for residents to $4,000 a month. People in his

72 INSIDE ASSISTED LIVING

rural, agricultural community could not afford to pay much more than
$2,000 a month, he argued. The assisted living facility located closest to
Huntington Inn, a well-regarded dementia care facility, charged $6,000
a month, but attracted its clientele from the larger region because of its
reputation. In addition, Mr. Hill said that he did not know what he would
do with a nurse in his facility for 20 hours a week, much less 40 hours.
He explained that there was just not that much for a nurse to do with
30–35 residents because the residents “don’t change that often.” He also
knew that finding a licensed nurse in his rural region would be a major
challenge.

Money Matters
As Karen introduces us to life in Huntington Inn, her story also provides
lessons about what life is like for a woman of her cohort. Like many in her
generation, she stayed home to raise her son and worked sporadically at
low-wage jobs. As a result, she could not afford to pay for assisted living
from her own resources for much more than one year. Over the course
of less than a year, Karen spent down to the Medicaid-level income at
the worst possible time: because of a cap no new Medicaid waiver slots
were available from the Maryland Department of Health and Mental
Hygiene, thereby limiting her access to care. Assisted living is frequently
described as a consumer-driven model of care (Carder and Hernandez
2006; Kane and Wilson 2001). Karen’s case reveals the limited and con-
strained “choices” available to low- to moderate-income seniors who can-
not afford to pay monthly charges of $3,000 or more.
The lessons of Huntington Inn suggest that the story of assisted living
centers on change. Through Karen’s experiences, we saw changes based
on declining physical and financial resources. As Karen told us, some of
these policies are not “fair” to people who played by the rules during their
lives. We learned about the importance of community connections among
multiple parties, including the assisted living staff, the resident’s family,
public agency staff, social service and medical providers, and advocates.
The rules and regulations of assisted living, both those set by the facility
administrator and those mandated by the state’s administrative rules, pro-
vided the subtext of life in Huntington Inn. The key theme of change

K A R E N AT H U N T I N G TO N I N N 73
became evident in the dynamic manner in which rules were negotiated
between the residents, their families, staff, and various people and orga-
nizations outside the facility.

Update

Our primary fieldwork at Huntington Inn ended after 11 months, but

through follow-up visits and telephone calls we learned of two significant
changes. Mr. Hill died suddenly, leaving a gap that stunned the staff and
many of the residents. (Some residents with cognitive impairment did not
seem to notice or understand his absence.) The family hired a manager
who made several unpopular changes; she was fired after a few months
and replaced by a woman who had once worked in the county agency on
aging—in fact, she had advocated on Karen’s behalf after receiving Karen’s
letter many months before.
After more health problems and hospitalizations, Karen’s doctor
diagnosed her as terminally ill, due to a combination of cancer and COPD.
She was placed under hospice care at Huntington Inn, with the hospice
staff coming to her small apartment to provide comfort care. Karen died
several weeks after her last return to Huntington Inn from a nursing
home. One of the direct care staff members proudly reported to us that
Karen had died “at home.”

74 INSIDE ASSISTED LIVING

 FIVE

` Mrs. Koehler at Middlebury Manor

I don’t know where else I would want to be. I really don’t. I mean,
there’s a lot of big places around with big names, but that didn’t inter-
est me in the least. I would rather be right here. I really would, because
to me it’s just a family.
—mrs. pierson

J ust in from sunning herself on the front porch, a tanned Mrs.

Koehler confidently maneuvered her motorized wheelchair off the
elevator and around the wheelchairs and walkers that crowded the hall-
way outside the hair salon. She cheerfully greeted everyone but did not
pause to chat. The white noise and warmth from the portable hair dryers
in the hallway had lulled some of the waiting ladies to sleep. Call-buttons
buzzed, and James Taylor crooned over the intercom system. It was Wed-
nesday, Jennifer’s day to shampoo and set residents’ hair. With what some
might regard as “airs,” Mrs. Koehler whirred past the smell of hair spray
and the sleepy women, not wanting to miss the next rerun of Law and
Order, the program around which she ordered her day.
Upstairs, in one of the recently vacated private rooms, Middlebury
Manor’s administrator was replacing light bulbs and cleaning the carpet.
The activity coordinator was downstairs busily preparing for morning
devotions and exercise class. An aide was wheeling the last of several resi-
dents from the dining room to the front sitting room, where the residents
would sit quietly, only occasionally breaking the silence with a comment
about the weather or the oft-repeated question “So, what is happening
today?”
Middlebury Manor was the home of 81-year-old Mrs. Koehler and
40 other men and women. Through her experiences, we learn more about
this place and what life is like for one of its residents. Like Middlebury

75
Manor, which has operated in the community for many years, Mrs. Koeh-
ler’s social connections run deep. Her story illustrates the many twists and
turns experienced by someone in later life as these events relate to long-
term care, especially the movement between an assisted living facility and
a nursing home, and reveals the personal emotions and cultural attitudes
triggered by confrontation with hard choices. Her story also demonstrates
the financial and interpersonal hardships families often encounter in this
process. And we will learn more about the challenges small businesses like
Middlebury Manor face in today’s market and meet some of Mrs. Koeh-
ler’s fellow residents.

Getting to Know Middlebury Manor

The Place and Its History

The unincorporated town of Middlebury borders a very large metropoli-

tan city. Despite its proximity to a large urban center, Middlebury has an
indisputable small-town feel. Middlebury Manor identifies itself as “low-
cost provider,” drawing most of its residents through word of mouth from
this tightly knit middle-class community. It’s not unusual for residents to
have previously participated in a worship service at the Manor as a vol-
unteer from the nearby church or to have paid a visit to a friend, neighbor,
or relative who resided there. Residents tend to know each other or the
family that owns and operates Middlebury Manor before moving in. Per-
haps because of this, the residents of Middlebury Manor seem willing to
accept occasional disruptions in facility services, even pitching in to help
the staff with tasks of running the place when needed.
Middlebury Manor is a second-generation family-run and -operated
assisted living facility. In the 1950s, Mr. Baker, the family’s patriarch,
purchased a poorly run board-and-care domiciliary home operating out
of a turn-of-the-twentieth-century mansion. After some renovations and
other improvements, he established a nursing home in the days before
nursing homes were so highly regulated.
Nearly 40 years later, in 1992, faced with increasingly strict federal
regulations, the next generation of the Baker family converted the mansion
into an assisted living facility. It had become difficult to keep the building
up to federal nursing home standards, so they decided to build a new 50-

76 INSIDE ASSISTED LIVING

bed nursing home connected to the original structure via an enclosed pas-
sageway. It made good sense to transform the mansion into a residence for
assisted living, a model of care that was just taking off then and did not
demand the same level of building and equipment requirements.
With a newly earned business degree and a nursing home administra-
tor certificate in hand, Michael Baker, the youngest son, became the ad-
ministrator of the newly formed facility, while his brother undertook the
management of the nursing home. Given the family’s experience in the
skilled care business, their new assisted living facility adopted a more
medical approach to care than some others, a contrast to the “social
model” seen in so many purpose-built facilities. Michael’s older sister,
Carol, an RN with extensive nursing home experience, became the lead
nurse. All of the direct care staff at the Manor were certified nursing as-
sistants (CNAs), and the family hired a full-time licensed practical nurse
(LPN), instituting practices that emphasized resident health and safety.
For example, the facility LPN or RN conducts an in-house assessment
when a resident has a complaint, as well as monthly weight checks and
monitoring of all over-the-counter medications, in addition to the manda-
tory monitoring of prescribed medications—all services that are above
and beyond state requirements. The Bakers chose to license the facility for
level 2 care, a decision influenced by their skilled care experience. “We
feel that if you’re taking level 3 patients, you’re acting as a skilled facility,”
said Michael. And with the nursing home next door, they anticipated a
flow of declining residents moving from the Manor into the home.
Middlebury Manor represents a number of assisted living residences
nationwide that are contiguous with a nursing home or part of a “con-
tinuing care retirement community,” offering housing ranging from fully
independent to assisted living and nursing home. In this case, the facilities
are separately incorporated but share food services and some medical
services, often shuttling residents back and forth. The Baker family sees
movement between the two facilities as an almost seamless continuum of
care. Residents, and especially their families, appreciate this continuity,
reassured by the fact that the paired facilities are part of a small family
business.
In 1998, the Bakers added a new three-level wing to the original man-
sion at the Manor, bringing the total assisted living capacity to 42 resi-
dents. The modest but comfortable rooms in the new wing all have chair-

M R S . K O E H L E R AT M I D D L E B U R Y M A N O R 77
level floral borders, cream-colored walls, and private bathrooms and
come with dark-wood Colonial-style furniture, now a little banged up and
scratched from years of being moved in and out of the rooms. The entrance
for the “existing building,” as the original mansion is called by the family,
opens into a large foyer with 10-foot ceilings, oak paneling, and a ceramic
tile fireplace with carved oak columns flanking the mirror that hangs
above the mantel.
Interior and exterior changes to the building over the years were influ-
enced more by practical and financial considerations than by esthetics. It
is sparsely decorated, with a single seasonally appropriate artificial flower
arrangement adorning one of the several fireplace mantels. (Christmas
time is the exception: strings of lights, music boxes, an artificial tree, gar-
land swags, and wreaths are hung from every possible wall, corner, or
shelf.) The wood floors are covered with short-pile industrial carpet, and
the top of the once-open oak staircase has been blocked with a heavy
metal fire door, detracting from the foyer’s original beauty. Vinyl siding
covers the exterior of both the mansion and the additions, with some ef-
fort made to tie the two together architecturally. The original front porch
faces the adjoining nursing home and provides a roomy and comfortable
place for residents to sit and watch people as they come and go. The resi-
dents share the front porch with the staff, who take occasional smoking
breaks in one corner. Some of the space within the two-and-a-half-story
mansion is used for administrative offices, as well as dining and activities;
only 13 of the 40 resident rooms are located there.

The Residents
An African American hairdresser who comes to Middlebury Manor for
the handful of African American residents there characterized the facility
this way: Middlebury Manor gets “high ranks.” By way of comparison,
she spoke of an upscale corporate-chain assisted living facility in which
she worked, the same chain that owns the Chesapeake (discussed in the
next chapter): “That’s the nicest of all. It’s more for celebrities,” she said,
describing how many of the Chesapeake’s residents are retired doctors,
lawyers, judges, and other professionals. She said if you could afford it,
the upscale facility is the place to be. But for “regular people, Middlebury
Manor is really nice.”

78 INSIDE ASSISTED LIVING

 I grew to really enjoy visiting Middlebury Manor and the “regular people” I met
there. As I did at the Chesapeake, I would play the piano for the residents. (The
piano was purchased with the help of this research study’s honorarium, replacing
an almost-unplayable piano.) And I learned early on that, unlike many of the
Chesapeake residents, who enjoyed Bach and Chopin, Middlebury Manor’s resi-
dents generally much preferred familiar, popular music from the 1940s. Some
would stick around after lunch to sing along as I played “Moon River” or “I’m in the
Mood for Love.” They taught me pinochle and offered advice as I neared the birth
of my first child. I met family members, witnessed employees quitting or being
fired, listened as residents complained and/or raved about the Manor, and
attended several funeral services. My visits are much less frequent now and if I
don’t bring my children along, I’m good-humoredly scolded.

At one of our first visits to Middlebury Manor, we were invited to

join a table of women for lunch. These women would be our entry point
in this facility, greeting us warmly each time we visited. Mrs. Pierson wore
a cluster of “pearl” earrings and a matching necklace. Nearly six feet tall,
Mrs. Pierson was an imposing and yet extremely affable woman. She
made a point of explaining how things operate in the facility. “They do
our laundry and we don’t have to cook our own meals,” she said, although
she noted that she brought with her to the dining room her own lettuce
salad, which she kept in a little refrigerator in her room. She said the staff
took them out shopping but would get anything for them that they needed.
“They spoil us,” Mrs. Hoffman said in response to this. “It doesn’t spoil
us,” Mrs. Fitzsimmons replied. “Did you have someone doing all of that
for you when you lived on your own?” Mrs. Hoffman challenged.
At our lunch, instead of the canned pear almost everyone else was
served, Mrs. Pierson was brought a little bowl of red Jell-O. Mrs. Fitz-
simmons said that every day, Mrs. Pierson ate her bowl of Jell-O. “I’m
diabetic,” Mrs. Pierson explained. Mrs. Pierson opened four individual-
serving half-and-half containers and poured these over her Jell-O. After
she was done, she opened up a little foil-wrapped loaf of zucchini nut
bread she’d brought to the dining room and began cutting pieces to share.
The bread came from a former neighbor of hers, she said. It wasn’t sugar-
free, so she wouldn’t be able to eat any of it. She cut two pieces for the two
ladies who sat at an adjacent table. One of the ladies, they intimated, was
103 years old. “Can you believe that?” Mrs. Pierson asked rhetorically.

M R S . K O E H L E R AT M I D D L E B U R Y M A N O R 79
 These ladies would greet the residents as they walked, “walkered,” or were pushed
past their table. They seem to be the socialites of the facility. One woman noticed
I was pregnant, and she told me she was expecting a grandchild soon. She said
her 61-year-old son was having a child with his 33-year-old wife. And Mrs. Pierson
proudly told me that she was soon to become a great-grandmother. She showed
me the special individualized announcement of the pregnancy she received from
her granddaughter. [Two and a half years later, I would finally meet her grand-
daughter and her great-grandson at Mrs. Pierson’s funeral.] After lunch I saw Carol
[one of the administrators] again and I told her who I sat with at lunch. “Oh, the
clique,” she said with a smile.

Mrs. Koehler was not a part of this clique, instead choosing to sit by
herself at a two-person table by the window. It was perhaps her “unhappy
childhood” that contributed to her independent, self-sufficient streak. Her
older sister had raised her after their mother was murdered. Her father, a
house painter, was mostly absent. She never attended high school; instead,
she started working as a telephone operator as a young teenager. When
she had her own two daughters, she vowed to give them a better child-
hood than she had experienced. She stayed at home full-time, planning
scavenger hunts and outings to the park and the zoo. Their wooded back-
yard was where all the neighborhood kids gathered to play. Mrs. Koehler,
known for her scrumptious cheesecake and crab cakes, cheerfully enter-
tained at a dining table that accommodated 24 guests.

Mrs. Koehler’s Transition

When Mrs. Koehler and her husband entered their seventies, life began to
change. Mr. Koehler, a retired vice president of finance at a local company,
paid the ultimate price for his years of during-lunch, after-work, and
evening cocktails. Diagnosed with cirrhosis of the liver, he suffered for
nine long years with alcohol-induced dementia, unable to recognize even
his wife before he died.
For as long as Mrs. Koehler’s health and strength allowed, she cared
for her husband in their home, changing his adult diapers and giving him
baths. Her older daughter helped by arranging for the installation of a
stair lift and checking in on them often. When Mrs. Koehler was unable

80 INSIDE ASSISTED LIVING

to lift her husband from the floor after a fall, she would call 911 for assis-
tance. Twice he fell on top of her. The operators at 911 finally told her
that they couldn’t continue to pick him up off of the floor.
Mr. Koehler’s dementia had made it impossible for him to keep the
bills paid and the checkbook balanced. His wife had never paid any atten-
tion to such matters and was not interested in learning. However, when
Mrs. Koehler and her daughters were finally forced to examine the fam-
ily finances, they were shocked to discover that he had mismanaged his
money. The couple was tens of thousands of dollars in debt, with money
still owed on a mortgage for the house they had bought 50 years earlier
for $14,000. There were no savings. And yet for years the Koehlers be-
longed to the local country club, his position of social prominence earning
him the moniker “Mayor of Middlebury.”
Joyce, the older daughter and the self-described “doer” of the family,
then assumed power of attorney for her parents. She spent the next couple
of years navigating her way through the maze of elder law, Medicaid, and
long-term care alternatives. She grew to know the long parade of Medic-
aid case workers by name. She filed and refiled for Medicaid eligibility for
her father, amassing a huge amount of paperwork and becoming a fierce
advocate for her parents. With this job as “paperwork person” came a
growing resentment toward and disappointment with her sister, Anita.
“I’ve talked to other people who were the paperwork person—they got
pooped on and all the brothers and sisters get all the credit for the visits
and the flowers and all the nice little things they do.”
Anita was aware of the load her older sister carried and described
their roles in this way: “My sister, Joyce, is the money lady, and I’m the
. . . I drive Miss Daisy. I’m the emotional daughter, where I take care of
all the necessities and visit and do all of the activities and get my mother
out and about and run her to the doctor appointments. And my sister is
a fantastic money manager, dealing with my mom. So we kind of split that
responsibility. I say we both do what we do best. Because I wouldn’t want
to have that burden. Joyce has got a lot of burden on her shoulders.” And
ultimately, despite Joyce’s frustration, she was grateful for the outings and
appointments Anita took care of with their mother.
What the Koehler family was experiencing is common when adult
siblings find themselves negotiating new roles as their parents become
more dependent. More often than not, the greatest responsibility falls to

M R S . K O E H L E R AT M I D D L E B U R Y M A N O R 81
the oldest child, usually the oldest daughter. And conflict of some sort
often results. Specific tasks are (de facto or deliberately) assigned to par-
ticular siblings, often resulting in feelings of inequity (Matthews 2002).
Joyce continued to pour herself into the task of getting decent long-
term care arranged and financed, motivated by a deep sense of loyalty and
gratitude to her parents. Despite her efforts, her father spent the last years
of his life in a substandard nursing home, with three residents to a room.
She vowed to make better arrangements for her mother. With the help of
an expensive but competent lawyer, she managed to do just that; the fam-
ily held onto her father’s life insurance policy, and her parents were able
to keep their house. They benefited from the federal law known as the
Spousal Impoverishment Law.1
Joyce and Anita sorted through their parents’ belongings, donating
and selling some, throwing out others. Joyce and her husband also made
some needed renovations to the house after Mrs. Koehler moved into Mid-
dlebury Manor. “We’ve replastered, we’ve torn up carpet, we’ve thrown
out stuff. There is no describing the process,” Joyce said of the physical
and emotional task of going through 50 years of stuff, her mother mostly
unaware of the work that went on behind the scenes. Their hard work
paid off. Like so many residents of long-term care today, Mrs. Koehler
was able to reap the benefit of the coincidental real estate boom on the
East Coast as the proceeds from the sale of her house helped fund her stay
at Middlebury Manor.

Mrs. Koehler’s Fall

Mrs. Koehler’s move to Middlebury Manor, like those of so many assisted
living residents, was precipitated by a fall in her home. Shortly before her
husband died in the nursing home, Mrs. Koehler fell in her bedroom on
the second floor of her home. This wasn’t the first fall she’d had, but it
became by far the worst. She landed uninjured on her bottom, but she
was unable to pick herself up. She managed to scoot on her bottom to the
stairwell, hoping for enough support from the stair lift to pull herself up.
But she accidentally tangled her clothes in the lever on the chair, launching
the stair lift down the stairs. Slowly and painfully, she was dragged down
each step and deposited at the bottom of the stairs. It was almost mid-
night. She decided not to use the Life Line device she wore around her

82 INSIDE ASSISTED LIVING

neck because she didn’t want to wake anyone. Fortuitously, she landed
near her recliner, where a crocheted afghan lay. She reached for the afghan,
pulled it around her for warmth, and lay on the hard floor for the night.
Her daughter said that her mother expected to die that night.
The next morning she awoke confused, unsure what had happened
and where she was. The pain soon reminded her of the previous night’s
accident. She pushed the button on the Life Line. When she left her home
by ambulance that morning, she would never return. No stranger to the
Emergency Room, Joyce gathered her mother’s necessary papers and medi-
cal records and met her mother and sister, Anita, at the hospital, prepared
for a long wait and for bad news.
In this accident, Mrs. Koehler had severed all the ligaments and ten-
dons in her leg and had broken six bones, including both shoulders. The
orthopedic surgeon wasn’t convinced Mrs. Koehler would make it through
the surgery. He’d never seen her so despondent. He had patched up her
brittle bones several times before, from hip to toe. He did her fourth and
final knee replacement, her rotator cuffs, even a nose job. When he gave
her the news about this latest injury, she folded her hands over her chest
and closed her eyes. He actually took her pulse just to make sure she was
still alive.
All her life Mrs. Koehler avoided doctors, but now that policy seemed
to have caught up with her. She had broken her first knee replacement,
brought on in part by her weight of about 250 pounds. The pain and sub-
sequent surgery for a second knee replacement drove her to inactivity. She
spent a lot of time on her recliner in front of the television with her feet
elevated. So now, 20 years later, when she was dragged down the stairs
during this most recent fall, she was “skeletally withered away,” the ortho-
pedic surgeon said.
She managed to pull through the extensive surgery, never to walk
again. The surgeon wrapped a metal plate around her porous femur, sav-
ing her leg. Persistent anemia caused by deterioration of bone marrow
made it necessary for her to go on weekly injections of a drug that built
up her blood cells. She traded in her walker for a new motorized wheel-
chair paid for by Medicare. The wheelchair, it turns out, gave Mrs. Koehler
the mobility and independence she had been missing. “It’s a good friend,”
she once said of the chair.
Mrs. Koehler spent several months in rehabilitation at the nursing

M R S . K O E H L E R AT M I D D L E B U R Y M A N O R 83
home run by the Baker family. Both she and her daughter lived about five
minutes away, and the nursing facility was an obvious choice because they
knew the Bakers. Mrs. Koehler had been a babysitter for the Baker chil-
dren, and her daughter Anita dated the oldest son in high school.
Mrs. Koehler fully intended to return to her home after rehabilitation.
She had no desire to stay in a nursing home and was anxious to recover.
Living with one of her daughters was not an option she entertained. For
years she had told her daughters: “Don’t ever worry. I will never live with
either one of you. Because I don’t think it’s fair. I have my own ideas and
ways. It just doesn’t work.” For much of the Koehlers’ married life, Mrs.
Koehler’s mother-in-law lived with them. “There is no house big enough
for two women, believe me,” Mrs. Koehler once said of those 30 years.
Eventually it became clear that Mrs. Koehler wouldn’t be going home.
Her doctors, her daughters, and the nursing home’s administrator all
agreed that she could not live alone. After several heated arguments in
which her daughter told her that hiring a home care aide would be too
expensive and that, further, no respectable agency would take on such a
high risk anyway, Joyce said to her mother in frustration: “Go and fall to
your death. You’ve said you want to die in your home. Go home.” After
some thought, Mrs. Koehler reluctantly agreed to the move: “I knew it
was coming because my children wanted me somewhere so they could
sleep at night, knowing that I was some place that someone would be
aware of what was going on with me. And I realized that, but I still didn’t
want to do it. So that was really my deciding factor— to give my daugh-
ters peace.”
The most logical next move was to the adjacent assisted living facility,
Middlebury Manor. A couple of days before she was set to move, Mrs.
Koehler drove her electric wheelchair across the covered passageway for
a tour of what would become her new home. She felt more at ease when
she met her soon-to-be roommate and admired the bright dining room,
with its many windows and a gas fireplace.

Community Connections
Mrs. Koehler’s room was to be on the second floor of the original man-
sion. Because of her limited finances, she would share a room with Mrs.
Pierson. She immediately liked this woman, an affable lady with a com-

84 INSIDE ASSISTED LIVING

manding six-foot presence. Her name was familiar, and they soon discov-
ered that their husbands had regularly played golf together. It turned out
that Mrs. Koehler knew several residents in her new environment; she
shared a hairdresser with one of the residents, and her daughters’ grade
school teacher had a room on the first floor.
Determined to make her move work, Mrs. Koehler put on a strong,
cheerful front. In the beginning, she worked hard to adjust to daily life in
this new setting, getting involved with the resident council, playing bingo
and going on outings for lunch or shopping at Wal-Mart. Sharing a room
proved to be a challenge, but she adapted to that change as well. The
roommates would agree to watch the same programs on each of their
televisions so that the sound of one would not compete with the other.
One New Year’s Eve, they invited a couple of residents to their room to
bring in the new year. They served snacks and champagne and watched
the ball drop in Times Square, along with millions of other Americans.

Middlebury Manor’s Transitions

Adapting to Change

When Michael, the administrator of Middlebury Manor, started making

plans to turn the second floor into a dementia care unit, he gave Mrs.
Koehler the option of moving into a private room in the newer wing for
the same rate she had been paying for a shared room. He needed to move
the residents without dementia elsewhere so that he could add a dining
room and eventually turn the few double rooms into single rooms. (In-
formed by experience, Michael had decided it would work best for each
resident with dementia to have a single room.) He contracted with the
local Alzheimer’s Association to train his entire staff specifically for de-
mentia care and worked directly with the staff to provide more individual-
ized and dementia-specific activities for the residents of the “second floor,”
as the separate dementia care unit became known.
Until this time, residents with dementia had been intermingled with
the other residents throughout the facility. Even with alarms on the doors
and the front door pass code protected, on occasion a resident with de-
mentia managed to slip out the front door and would later be found
walking along the busy road bordering the property. Increasingly, some

M R S . K O E H L E R AT M I D D L E B U R Y M A N O R 85
residents who did not have dementia had begun to complain about those
with dementia, expressing disdain and annoyance at their behavior. A
separate, locked unit would provide a safer environment and lessen these
residents’ annoyance; he also hoped the special services would attract
more residents with dementia.
Mrs. Koehler immediately accepted Michael’s offer for a private room,
something she could not have afforded otherwise. She chose a room on
the “terrace” level of the new wing, at the end of a hall, purposely away
from a lot of traffic. She bought a new dorm-room-sized refrigerator to
keep beer and other drinks cold for her visitors. Her daughter Joyce helped
decorate her new room. Mrs. Koehler collected bird-themed items, and
they hung her collection of cardinal decorative plates on the wall along
with a shadow box of miniature birds; they also asked Mr. Baker if they
could place a bird feeder outside her window. He agreed. Mrs. Koehler’s
nine-year-old granddaughter kept the feeder filled with bird seed. Joyce
also placed flower boxes with colorful annuals near the bird feeder, creat-
ing a pleasant view from her mother’s room. It wasn’t until this move, one
year into her stay, that Mrs. Koehler felt truly “settled in.” Of her move
to a private room she said, “I just adjusted [before]. But I adjusted more
coming down here.”
For Mrs. Koehler, life in assisted living was in many ways reminiscent
of her life in the community. A “Lioness” with the local Lion’s Club, she
had volunteered for 30 years running the canteen at a local mental hospi-
tal. She stayed actively involved as a volunteer in her new home at the
Manor. She took on the job of sending get-well, birthday, and sympathy
cards to all of the residents and their family members. She was so efficient
that at one point during our research she had birthday cards signed and
ready for the next year. During one of the monthly Resident Council meet-
ings, Michael Baker announced that Carrie, the well-liked activities coor-
dinator, had decided to leave her job because Michael had had to cut her
hours back. Mrs. Koehler cheerfully volunteered to fill in by arranging
transportation for outings, funerals, and other outside events until a new
coordinator was hired. Another resident volunteered to lead the exercise
classes. The general mood during the Council meeting was positive, with
several more residents willing to roll up their shirt sleeves and get to work,
even though the activities they volunteered for were paid for by their

86 INSIDE ASSISTED LIVING

monthly fees. Some residents, though, complained behind closed doors
about Middlebury Manor’s reductions in social activities.

Small Business Woes

Michael had been struggling to make ends meet with the doubling in lia-
bility insurance premiums, increases in health care costs for his employ-
ees, and increased staffing salary costs. The summer the second-floor de-
mentia care unit opened was especially difficult. Several care staff members
quit, forcing Michael to hire agency workers at much higher hourly rates.
The occupancy rate at Middlebury had also been chronically low, a strain
on a small business with an already-thin profit margin. More than 300
new assisted living beds had flooded the market nearby, dramatically
increasing competition. Michael restructured the fee schedule to better
reflect the costs of doing business. Instead of a flat fee for care, those resi-
dents who needed added care would pay more than those who didn’t. For
example, he instituted a “mobility” fee for those who routinely needed
transporting to and from their rooms. He noted that the new fee structure
“supplied us with the dollars to provide the services for the people who
want to stay here, even though they do qualify for skilled nursing care.”
The higher fees caught everyone off guard. A couple of residents re-
volted in a Resident Council meeting. “What is assisted living,” one resi-
dent demanded, if it does not include assistance getting to and from the
dining room? While the rates for some residents actually went down, for
most the new rate structure meant an increase. Mrs. Koehler’s rates went
up 50 percent. Residents and family members complained bitterly. Joyce’s
response was outrage: “I could have understood 15 or 20 percent increase.
I wouldn’t have been happy with that either. But 50 percent! There’s no
way we could have prepared for this. What choice do we have [but to pay
it]? We’re selling her house, all of her furniture is gone . . . They know
they have us. If we move her to another facility, we’ll have to pay the in-
itial community fee. And she’s made friends here. It’s also very convenient
for us.” (A community fee is a one-time entrance charge some assisted
living residences assess as a way to cover costs for maintenance and up-
keep of the building. At Middlebury Manor, the community fee in 2005
was $2,000 and was nonrefundable after 60 days.)

M R S . K O E H L E R AT M I D D L E B U R Y M A N O R 87
 Although no one moved out because of the rate increases, Michael
fielded many complaints, mostly from family members. Many residents,
we discovered in our research, hand over their financial matters to family.
One resident, a former accountant, noted the many empty rooms and
fully recognized the facility’s need to make a profit. But he, like the others,
was most distressed by the cutback on activities from more than 40 hours
per week to 20 hours per week and by the sudden departure of Carrie,
the activities coordinator.

Employees’ Concerns
Young and a bit hot-headed, Carrie had endeared herself to many of the
residents by the way she corralled residents for morning exercise, her
youthful energy stirring up what is often a sleepy, quiet place. And prob-
ably her most popular act, at least with the men, was serving ice-cold beer
at the biweekly Men’s Group she ran.
Carrie went out of her way by taking some of the more difficult resi-
dents under her wing. A good example of her enthusiasm for the “least of
these” took place one morning during exercise. Miss Wry, one of the
difficult-to-like residents, sat in her chair with her head propped up by her
hand after being brought to the exercise circle by Carrie. As was usual,
Miss Wry dozed in and out of awareness, completely unengaged. When
the large, inflated ball would come to her, it would just hit her on the head
and bounce off, and someone else would have to retrieve it. “She’s sleep-
ing,” one resident commented. Miss Wry would half open her eyes but
never look up. She didn’t even take the initiative to kick it until, toward
the end of the hour, the ball rolled to a stop right at her feet. She didn’t
stir. Carrie called out loudly, “Kick it, Miss Wry!” No response. Carrie
didn’t give up. She kept encouraging Miss Wry and the others began to
join in. Finally, Miss Wry stirred enough to lift her foot and give the ball
an anemic kick. The room erupted into cheers, and Miss Wry blithely
resumed her semiconscious state.
Carrie showed special interest in Miss Wry, a woman with consider-
able cognitive impairment, precisely because she was difficult to engage.
Miss Wry had no children or family. She was no staff member’s favorite.
Carrie’s affection for Miss Wry and others like her seemed part of her
sense of mission. Many residents were sad to see Carrie go.

88 INSIDE ASSISTED LIVING

 Direct care staff had their own share of concerns. They complained
about the many residents whom they labeled “nursing home material”
that Mr. Baker, perhaps due to budgetary concerns, had started to accept
and keep beyond the point they thought appropriate. These residents re-
quired extra care, and the direct care staff bore the brunt of that burden.
For a variety of reasons, assisted living residences nationally, like nursing
homes, are accepting sicker people than they had in the past. In the case
of Middlebury Manor, the rationale was part philosophical and part
financial. But perhaps a larger factor is the societal trend to remain in
one’s home as long as possible.
Mrs. Weston was one of the residents the direct care staff believed did
not belong in assisted living. For as long as they could remember, she’d
been unable to bear her own weight or roll over in her bed. It required
two people or one well-trained person with a gait belt (a lifting and sup-
porting device) to lift her. Some staff members had injured their backs
lifting her. One staff member recounted the following incident with Gail,
one of the direct care staff: “One day I heard somebody kept hollering,
‘Help, Help’—so I walked back to Miss Weston’s room. Miss Weston and
Gail are on the floor. Miss Weston laid down alongside of Gail—Gail’s on
the bottom. Miss Weston done fell on top of her so many times—but this
particular time they were in the middle of the bathroom floor. Gail on the
bottom and Miss Weston right on top of her laughing. They say she still
meets assisted living criteria. She can still feed herself. But physically, she
can’t do anything.”
Some direct care staff members believed that Mrs. Weston was al-
lowed to stay because she had been a resident for so long. Once when a
move to the nursing home was suggested to Mrs. Weston, she cried and
cried. “But I seen them get rid of people who was less work than her,” one
staff member said. Some more cynical direct care staff speculated that
Mrs. Weston was staying because she was paying privately and was in no
danger of running out of money. Ultimately, despite her physical impair-
ments, Mrs. Weston was pleasant and generally liked by the direct care
staff, another factor in determining who goes and who stays. Our research
indicates that this is an example of the way that Middlebury Manor, like
some of the other assisted living facilities profiled in this book, have rules
but appear to enforce them selectively, based on a variety of complex and
unpredictable factors. We discuss this issue further in Chapter 9.

M R S . K O E H L E R AT M I D D L E B U R Y M A N O R 89
 Despite Mrs. Koehler’s almost monthly cycle of going to the hospital
and from there to the nursing home, she had always returned to her room
in Middlebury Manor. Fluid built up in her chest and had to be suctioned
periodically, a condition caused by congestive heart failure. Routinely, the
care staff was forced to call 911 when Mrs. Koehler’s breathing became
too constricted. She good-humoredly dubbed herself “the comeback kid.”
But Mrs. Koehler’s health needs put a strain on the care staff and greatly
concerned Carol, the RN whose role it was to make all medical and health
decisions. Carol did not feel comfortable leaving nonmedical care staff to
handle a possible cardiac arrest or suffocation by fluid. When Mrs. Koeh-
ler was ready to return after one of these cycles, Carol determined Mrs.
Koehler would need to move permanently to the nursing home. Mrs.
Koehler’s doctor didn’t think she needed 24-hour nursing care, but the
nursing home’s physician disagreed. Mrs. Koehler told her daughter when
she learned of this decision that she would die if she had to stay in the
nursing home. At Middlebury Manor, however, Carol had made up her
mind, and Michael initially deferred to his sister on this decision.
Joyce, Mrs. Koehler’s older daughter and advocate, was well aware
of the issues that stood between her mother’s desire to stay at Middlebury
Manor and Carol’s unbending decision to not readmit her. While she un-
derstood Carol’s fear of negative consequences should her mother die in
Middlebury Manor, Joyce said she would never hold the facility respon-
sible. She argued: “Why take away the private room, the cable TV? If she
chokes to death on a crab cake, then at least she went out enjoying herself.
My sister and I would rather she pass away in her room with a clicker in
one hand and a Bavarian cream donut in the other.”
Joyce described a move from Middlebury Manor to the adjacent
nursing home as going from a luxury hotel to a budget motel. Her mother
would lose so much. Lack of adequate space for a recliner would force
her to stay in her motorized wheelchair or in her bed all day. And without
cable TV service, unavailable in the nursing home, Mrs. Koehler wouldn’t
be able to watch her favorite show, Law and Order.
Despite Mrs. Koehler’s complaints about Middlebury Manor’s policy
on restricting over-the-counter medication and what she reported as rou-
tine searches of her room for hidden medication, she knew that life in the
nursing home would be even more restrictive. Ultimately, Mrs. Koehler

90 INSIDE ASSISTED LIVING

was happy living at Middlebury Manor and did not want to move. She
was content to let her daughter Joyce work on her behalf, pleading to her
daughter not to let this happen but stepping back almost passively from
dealing directly with Michael or Carol to wait for news of her fate.
Joyce frantically began to look for alternatives. She called several
assisted living facilities in the area. She was upfront with them about her
mother’s health issues, with the consequence that many of these facilities
refused to accept Mrs. Koehler as a resident. The one that agreed to take
her later changed its decision when its staff came out to perform an in-
person assessment. The stress and hard work over the prior four and a
half years had taken a toll on Joyce and her family. “This is taking over
my life, and it shouldn’t,” she said. “My kids have eaten pizza and cheesy
bread and McDonald’s, because I didn’t have time. ‘Oh, well, just get
them a Happy Meal. I’ve got to get this done.’” Friends told her she looked
like she had aged 10 years. She even permanently lost her hearing in one
ear, caused by a virus brought on by stress, according to her doctor. But
she felt she owed it to her mother to continue fighting for the best possible
living situation. She loved her mother and wanted her to be happy, just as
her mother had provided a happy childhood for her and her sister. She
said, “You do it in honor of what your parents did for you as a parent.”
After a few tearful conversations with Michael and Carol Baker, Joyce
was suddenly told of an unexplained approval for her mother to return.
Behind closed doors, Michael apparently overrode Carol’s decision. The
reason for this change was unclear: perhaps it was part of his plan to save
money. He wanted to change Middlebury’s medical approach to care to
one that was “more assisted living,” as he described his plan. In this case,
he would consider making exceptions to allow residents to age in place,
even if it meant making some compromises. Carol’s nursing home back-
ground, in this case, might have been a barrier to moving in the direction
Michael decided to take the facility to stay solvent. He had already elimi-
nated the full-time LPN position and wanted to hire a part-time nurse
with experience specifically in assisted living. If money was no object, he
preferred the more medically cautious route. He once said, “My definition
of a successful [transition] is ‘appropriate’—appropriate for their safety,
which typically involves making sure that they’re receiving the proper
supervision, monitoring and assistance that they might need.” But in this

M R S . K O E H L E R AT M I D D L E B U R Y M A N O R 91
case, he believed that keeping Mrs. Koehler was within state regulation.
Joyce believed that her family’s ties with the Baker family ultimately saved
her mother from the move to the nursing home.

Middlebury Manor: Moving to a More Clearly Defined Assisted

Living Paradigm

Michael had a record of being a flexible administrator, willing to accom-

modate financial shortfalls to allow residents to stay. “I don’t think we’d
still be here if we weren’t. I mean we just don’t have, we’re not able to
attract, the clientele that have enough money.” This was welcome news
to many residents and family members. And it also served the facility well
by keeping beds filled. He liked to distinguish himself from the competi-
tion, noting that he didn’t just “kick people out.” For example, with
doctor’s approval, the Manor allowed one resident’s son to come into the
facility three times a week to bandage and clean his father’s foot as a cost
savings. And Michael started a subsidy program, allowing residents who
qualify for Medicaid to move to one of the smaller rooms with no private
bath, even though the state Medicaid waiting list was nearly 6,000 people
long, according to Michael. The residents had to be able to pay at least
the Medicaid waiver amount of $1,634 (2005 figures) to qualify for the
Manor’s subsidy. But if there were no small rooms available, the resident
whose resources ran out might have to leave Middlebury Manor. Michael
remarked: “You know, it’s been challenging. But it works. People don’t
have to leave, and it keeps the families from having to mortgage their
house to pay the bills or bring Mom home.”
Michael came to realize that the higher fees he’d instituted in the
previous year of our research there no longer made Middlebury Manor a
good buy relative to the nearby competition, and perhaps was contribut-
ing to the lower occupancy rate. Again for financial reasons, he decided
to essentially shift the way the Manor did business further from a nursing
home model. “I made the mistake of providing all of these services, and
before you know it, you realize you’re providing a lot of services you
aren’t charging for. It’s kind of a tug of war because the clinical is always
at odds with the financial and the business side.”
One of the benefits of being essentially a mom-and-pop business is

92 INSIDE ASSISTED LIVING

the ability to receive direct feedback and change course as needed. In the
end, Michael made some hard decisions to reduce some services (like so-
cial activities) and do some staff restructuring, allowing him to lower
rates. Mrs. Koehler’s rates decreased, but no refunds were given. A refund
was never offered or considered because it was not even possible. “After
going through 2003 and 2004, we kind of snowballed into this higher
acuity level of service. Fact is people can’t afford [the higher level of ser-
vices and care]. And I’ve learned that, the hard way. And the people have
exhausted their funds.”
Mrs. Koehler’s old roommate, Mrs. Pierson, suddenly found herself
in this very situation. Unaware of her financial standing or of her son’s
monthly contribution, she was informed by her son one day that she was
about to run out of money. Although she would have been willing to trade
her private room with bath for one of the small low-cost rooms, none
was available at the time. Moving to a smaller room in the Manor wasn’t
an option anyway, since her monthly income was too little even to have
qualified her for the in-house subsidy. Tearfully she accepted her fate; she
would be moving next door to the nursing home. She qualified for skilled
care and could receive Medicaid funding there. Though in reality she was
only moving next door, for her the move might as well have been across
town. At first she held onto the hope of moving back to Middlebury
Manor, but eventually she resigned herself to her shared room at the nurs-
ing home. As time went on, she rarely walked the short distance to Mid-
dlebury Manor to visit, stating that she was afraid of falling. Her entire
social network had changed. Her living space had been reduced yet again,
this time to two drawers and half of a small wardrobe.
Despite Mrs. Pierson’s disappointment, she approached this transi-
tion in much the same way as she did her move from her own home to
Middlebury Manor four years before: “You wonder how you can, you
know, go through all that and it’s just a loss of so much. But you learn to
cope and you have to do it. I mean, otherwise you’d go crazy. You have
to learn that—say, well, this is it. This is the way it’s going to be, and you
learn to do that. It’s hard but you learn. And you can always look around
and see somebody worse off than yourself. Absolutely.”
Mrs. Jackson was more fortunate. A retired teacher with a decent
monthly income, she could afford to stay in the facility provided she
moved from her private room with bath to one of the smaller Medicaid

M R S . K O E H L E R AT M I D D L E B U R Y M A N O R 93
rooms. Her son had been communicating with Michael Baker for the past
year to plan for the imminent shortfall after her savings were depleted.
And so, when the time came, Michael offered them the in-house subsidy,
cutting her fees by about $1,000. The Medicaid room was about half the
size of her first room, with no closet or bathroom. Mrs. Jackson now had
a little sink in the corner and a tall but narrow wardrobe that served as a
closet. “My son said I didn’t need all those clothes anyway,” she said with
a laugh. She was remarkably positive about the loss of space and privacy:
“Well, as long as I have a place to sleep and eat, I’m okay. I’ve lived a good
life.” She was grateful that Michael was willing to accept a reduced rate
and that she was not forced to move. She wondered if he made this excep-
tion in part because she was one of the very few African American resi-
dents at Middlebury Manor.
Fortunately for Mrs. Koehler, running out of money was not a pend-
ing threat. Once back in her room at the Manor after her latest nurs-
ing home stay, she celebrated with her daughters by sharing a bottle of
champagne.
Mrs. Koehler’s health continued much the same way as it had: a
buildup of fluid forced her to take oxygen and eventually led to 911 calls,
a hospital stay, the nursing home for rehab, and then back to Middlebury
Manor again. Each time, she came back a bit weaker. She then lost her
ability to speak. Her throat had been persistently sore; to soothe it, she
drank ginger ale, Sprite, and tea, all thin liquids. But this made her condi-
tion much worse. She’d been irritating her throat and literally aspirating
the liquids. Over time, this damaged her vocal cords, all a part of her
congestive heart failure and the buildup of fluids in her chest. Mrs. Koehler
seemed resigned to this latest development, choosing to ignore the exer-
cises prescribed or the order to eat only pureed food.
Her daughters were sympathetic to their mother’s decision. Mrs.
Koehler just shrugged her shoulders when asked about the exercises.
Joyce said, “It’s as if she’s saying, ‘It’s just one more burden to carry.’” She
couldn’t imagine forcing her mother to live out her final days eating food
that looks like “vomit,” as Joyce described it.
Middlebury Manor continued to care for Mrs. Koehler despite Carol’s
persistent concerns and Mrs. Koehler’s steady decline. According to Joyce,
Michael was more understanding and became an advocate for her mother
to stay there. And Mrs. Koehler was convinced that Carol simply didn’t

94 INSIDE ASSISTED LIVING

like her. She learned not to complain too loudly or to make too many re-
quests. Like some other residents living in assisted living, she feared ret-
ribution by the direct care staff and administrators, the people she relied
on for the most basic care and those who had the power to take away her
home at any time. Warranted or not, this concern was echoed by others
here and at other assisted living residences we visited.
Toward the end of Mrs. Koehler’s life she developed a friendship with
one of the long-time care staff members, Kira. Kira shared Mrs. Koeh-
ler’s love for shopping, and one day when Mrs. Koehler’s younger daugh-
ter, Anita, came by to visit her mother, the three started talking about a
favorite new grocery store north of the city. Mrs. Koehler had never been
there, and so Kira volunteered to go with them during her time off. Mrs.
Koehler’s daughter drove.
Kira smiled as she remembered Mrs. Koehler’s reaction to the enor-
mous store: “She liked to die and go to heaven.” Mrs. Koehler spent more
than $100 that day. And the experience cemented a friendship of sorts.
Kira continued to accompany Mrs. Koehler and Anita on outings. When
asked why she did it, she said she “went along just as a friend,” not ex-
pecting or asking for anything in return. “We became real close” towards
the end of Mrs. Koehler’s life, Kira said.

Final Thoughts

When the Baker family first opened Middlebury Manor in 1992, Michael’s
father predicted assisted living would go the way of nursing homes and
become highly regulated. He had lived through this very process with the
nursing home he started in the 1950s. Assisted living had seen little regu-
lation, but that is changing. “We’re going down the same road now,”
Michael said of the recent state regulations and the ongoing discussion of
how to implement them. “And it’s not necessary to reinvent the wheel.”
Michael expressed annoyance when he heard that state policymakers and
advocates were discussing the possibility of requiring all assisted living
facilities, regardless of their level-of-care categorization, to keep an LPN
on staff. Although Middlebury Manor had employed a full-time LPN in
the past, he now found it impossible to support such a position financially.
Michael recognized the need for an LPN for assisted living facilities that

M R S . K O E H L E R AT M I D D L E B U R Y M A N O R 95
are licensed for level 3 but did not regard this as necessary for level 2 fa-
cilities, the level of Middlebury Manor. “Assisted living should stay light-
skilled care,” he said. He saw the proposed regulation as an “unfunded
mandate.” Out of frustration he commented, “If things continue as they
are, I’ll have to hire only agency people,” unable to afford a regular staff
and their benefits. “They’ll come to work and I’ll hand them a list of
things to do: ‘Four showers on this floor, etc.’” Michael was disturbed by
a move in this direction and the diminished quality he foresaw arising
from it.
As he noted: “Residents are coming into [the facility] more needy. In
1992, most everyone was ambulatory and needed more modest medical
assistance.” This trend is not unique to Middlebury Manor but is instead
in part due to a larger national trend to age in place. Seniors are staying
home as long as possible with the help of family or home health aides, or
through sheer resolve. Once in assisted living, residents, with the help of
their families, find ways to stay there, perhaps hiring a personal aide or
accepting certain risks, negotiated between the administrators, families,
and resident. Residents and their families, Michael noted, resist a move
from assisted living to a nursing home, which carries an inescapable stigma.
“When an issue arises, or you can even say in some cases, conflict arises
because of transfers—typically if we recommend a transfer to [the adja-
cent nursing home] or another skilled facility, the resident and their family
many times will not agree with that. They want to keep their private
room; they want to keep the situation they have here. So we have to really
draw a line in what we’re able to do safely in-house with the staff that we
have on our payroll.”
Mrs. Koehler found herself in the middle of this very “conflict,” to
use Michael’s word. Her highest priority had become avoidance of a per-
manent move to a nursing home. For her, transition was almost a constant
possibility, so much so that it had become routine. When Mrs. Koehler
cycled in and out of the nursing home for rehab, she understood the stay
as temporary. But when faced with a potentially permanent move, she
became fearful and full of dread.
Despite Michael’s adamancy, as we learned from Vivian Koehler’s
story, the line is often drawn in the sand. For Mrs. Koehler, her declining
health, the opinion of the nurse, the medical “culture” of the Manor, the

96 INSIDE ASSISTED LIVING

facility’s financial challenges, her daughter’s tireless advocacy, and perhaps
their personal ties to the Bakers all played a part in what transpired.

Update

Mrs. Koehler eventually succumbed to one of her many ailments, the

drug-resistant staph infection MRSA that she’d contracted during one of
her many hospitalizations. In the weeks before her death, a feeding tube
was recommended, to which Mrs. Koehler replied: “Hell, no, I don’t want
to be on a feeding tube.” And, despite the warnings of possibly choking to
death, she brazenly took a swallow of the cold Classic Coke her daughters
reluctantly gave her. “That tastes so good,” Mrs. Koehler whispered.
A homecoming party welcomed Mrs. Koehler when she returned to
the Manor for the last time. A banner made by residents hung on the door,
and a small group gathered to celebrate her return. But Mrs. Koehler was
tired and growing more and more weary. “She was worn out,” Joyce said.
“We were worn out.” When the MRSA infection flared for the final time,
Middlebury Manor called an ambulance, and Mrs. Koehler lost conscious-
ness before her daughters arrived at the hospital. Joyce said that she and
Anita kept watch for two days and were beside their mother as she peace-
fully “sputtered to a stop.”

M R S . K O E H L E R AT M I D D L E B U R Y M A N O R 97
 SIX

` Dr. Catherine at the Chesapeake

I met Dr. Catherine on my first morning at the Chesapeake. Standing in the

lobby, establishing my bearings, I found myself in the middle of two lines of
traffic, one group of women heading back to their rooms after breakfast,
another group lining up to place lunch orders for the day’s outing to a
nearby restaurant. Within moments I was enveloped by a long leash, soon to
be licked by a friendly white terrier. Bending down to pet the dog, I could
hear conflicting comments from residents, ranging from one woman’s exas-
peration about losing her balance to a “Good morning, Muffin” from an obvi-
ous dog-lover. I looked up to greet Muffin’s owner, but my eyes met only the
long leash. I made out its circuitous path, weaving through the legs of resi-
dents and walkers, ending in the hand of a petite, well-dressed woman talk-
ing to the receptionist. I soon learned that Dr. Catherine is a visible and inde-
pendent, poised, rarely demure resident.

D r. Catherine looks quintessentially Chesapeake. She dresses im-

peccably in periwinkle blue or azalea pink; the Chesapeake’s
decor is coordinated in patterns of hunter green and burgundy. She redec-
orated her suite several months after moving in, while the Chesapeake
refurbishes at any hint of wear. Dr. Catherine purchased a new bed and
vanity, and the Chesapeake ordered a pool table and baby grand. Though
younger than most of her peers (in her early seventies), she mirrors assisted
living residents in that she has been diagnosed with dementia, arrived as
a result of a catastrophic event, and transitioned from her home into the
Chesapeake through several medical facilities.
Over the three and a half years in which we got to know Dr. Cathe-
rine, we found her to be a sociable resident who walked her dog often,
was active at residents’ meetings, embraced the cause of smokers’ rights,
formed friendships, advocated for residents, and championed the basic

98
assisted living values of independence and autonomy. In this chapter we
follow Dr. Catherine through a dual transition, first one into assisted liv-
ing and eventually a second into the dementia care unit. We discuss issues
of entry and acceptance of an assisted living community as home; delve
into the dynamic social relationships among residents, families, and staff;
explore the role oversight plays in lifestyle change; and provide insights
into the residents’ perspectives on the values of assisted living and the
administrators’ balance of risk and comfort for all stakeholders at the
Chesapeake.

Introducing Dr. Catherine

Dr. Catherine led an active life as an educator. She rose from classroom
teacher to area supervisor, consulted in Africa and Asia, and earned a
graduate degree while raising two children. Following her retirement, Dr.
Catherine did nothing. Her friends, all teachers, were younger and still
busy in the classroom. After a car accident, she gave up driving, thus re-
stricting her movements even more. Her daughter, Susan, noticed that she
was becoming increasingly disoriented, having falls and strokelike symp-
toms requiring hospitalization, and drinking after having been sober for
25 years. Her friends heard less and less frequently from her. Inadver-
tently, Susan discovered that her mother had been unable to learn how to
operate the telephone answering machine. Her friends interpreted the lack
of contact as lack of interest, when, in fact, Dr. Catherine was cognitively
unable to respond.

Need for Assisted Living

Susan began to look for residential placements with graduated levels of
care soon after she realized that her mother was having problems, but
Dr. Catherine did not feel she was ready to move out of her home. Susan
placed her mother’s name on a list at one assisted living facility in the
event that an apartment would be needed quickly. Dr. Catherine per-
mitted this but would not visit the home nor meet with the elder care
consultant Susan hired. Divorced and independent, Dr. Catherine on her
own found a woman to help her. Susan did not approve of this person, as

D R . C AT H E R I N E AT T H E C H E S A P E A K E 99
she smoked and drank. An MRI after a fall showed that Dr. Catherine’s
brain was “shrinking,” and the physician spoke to both of them about
alcohol-related dementia. Although this had been mentioned three years
earlier, this time it “sank in,” and Susan believed that her mother stopped
drinking.
Several months later, Susan found her mother in crisis. She had had a
“bad fall at her home. And you know, it was in between when people were
coming to visit her. . . . We think she was on the floor for three days. . . . She
has a very good friend. . . . They would call each other every day. He’d
been calling and calling and couldn’t get her, so he finally called the police
and they found her. They were able to break in and they found her on the
floor.”
While in the hospital, doctors told Susan that her mother had severe
Alzheimer’s disease, but Susan and then later the Chesapeake staff never
agreed with this diagnosis. Susan commented that her mother “had been
on the floor with no food or water for at least three days” and feels this
was sufficient cause for her mother’s unsteady mental state. Dr. Catherine
spent two weeks in the hospital and several more in rehabilitation while
Susan combed through lists of assisted living homes.
Susan had six criteria for selecting a residence for her mother: safety,
comfort, a social network, meals, dispensing of medication, and a home
that was well kept and handsomely decorated. She had already reserved
one room when a friend suggested the Chesapeake. The distance to her
own home was longer, but the travel time was comparable, and Dr. Cath-
erine’s close graduate school friend lived only minutes away. The initial
visit was positive, and Susan especially appreciated the grounds where her
mother could safely walk Muffin. The Chesapeake had one opening, and
Susan followed her instinct to switch homes. Although for months Dr.
Catherine did not feel she belonged in an assisted living home and fought
with her son and daughter not to stay, she still thought the Chesapeake
“a pretty place.”

Assisted Living as Home

Clare, the Chesapeake’s assistant executive director, has much experience
counseling families and residents, holds a graduate degree in gerontology,

100 INSIDE ASSISTED LIVING

interned in and reorganized other assisted living homes, and ran the de-
mentia care unit at the Chesapeake before her promotion to director of
the assisted living wing. She advises family members to consider residents’
feelings when they are moving in and to make their apartments as “homey”
as possible.
Once acclimated to the Chesapeake, Dr. Catherine and her daughter
together began to realistically define the comforts of “home.” Dr. Cath-
erine’s rooms were on the first floor, an easy stroll to—or retreat from—
everywhere: dining room, porch, elevator, television lounge, smoking
area, and the outdoors with Muffin. Initially, her two-room suite was
configured with the bedroom facing the parking lot and the living room
opening to the corridor. The disabled-accessible bathroom and a closet
are recessed and situated between the rooms, and a wide hallway allows
light from the windows to filter through the apartment.
In the redecoration, Susan and her mother decided to switch the lay-
out, and the couch, newly bought to fit the space, rested between windows
to allow Dr. Catherine natural light for daytime reading. The double bed
was exchanged for a small twin, placed along the wall in the inner room
where the light is diminished and Dr. Catherine could comfortably nap in
the afternoon. A large television sustained her penchant for national news,
and a white portable television atop a bureau served for viewing during
occasional insomnia. Dr. Catherine’s diploma, sketches, and photographs
were hung, and the bureau drawers marked with colors and clothing
items so she could easily find what she needed. Dr. Catherine placed Muf-
fin’s bed, rug, and water bowl conveniently near the door, and she decided
to retain her children’s infant cradle to hold magazines and photo albums.
Both women were pleased with the result of their decorating; it was some-
thing fun they did together.
Clare is realistic when it comes to understanding residents’ frames of
mind when moving in. “It doesn’t happen very often that residents are
coming in here like—‘Oh, this is going to be great—I can’t wait to move
into the Chesapeake and leave my home of 50 years!’ Usually they are
very resistant to the move.” Clare feels that eventually about 70 percent
of residents call the Chesapeake “home.” Gina, a care aide in her fifties
and a favorite among the residents, empathizes with those under her care
and tries to put herself “in their shoes.” She commented that it “must be

D R . C AT H E R I N E AT T H E C H E S A P E A K E 101
hard to leave your home of 40 or 50 years” and finds that residents often
arrive angry and retreat for days into their rooms. Eventually, “they come
around,” and she hears, “It’s really not so bad here!” as residents begin
to participate in social activities.

Keeping Busy
The corporation that owns the Chesapeake prides itself on developing and
offering distinctive activities believed to engage residents mentally and
physically. Because Tammy, the Chesapeake’s activities director, is intense
about her work, she is treasured by some residents while alienating others.
Dr. Catherine found Tammy’s high-pitched voice and ageist and aggres-
sive speech annoying because “She doesn’t stop to listen . . . you know,
she’s always ‘Come on Catherine, let’s do this,’ ‘Come on Catherine, let’s
go do that,’ and I say, ‘Listen, listen—I have some reading I want to do.’
She has always got something for you to go to. Well, I’m not a go-to per-
son all the time. I can be by myself.”
Structured activities did not initiate Dr. Catherine into the Chesa-
peake, but having a dog and being a smoker did. Muffin needed to be
exercised, and while the Chesapeake welcomes animals, it is the respon-
sibility of the pet owners to maintain their care. Muffin drew Dr. Cathe-
rine outside for walks, and the friendly terrier attracted other dog lovers.
Dr. Catherine told me that she “would not have come” to the Chesapeake
without Muffin.
Smokers meet in their segregated areas. Because cigarettes are not
permitted in suites, Dr. Catherine requested cigarettes two or three at a
time from the receptionist and smoked in the “smoking room,” its loca-
tion requiring a walk through most of the downstairs, or outside in the
front of the building, where benches and a receptacle for cigarette butts
are placed. Dr. Catherine got to know Dr. Smith in the smoking lounge,
and through their repeated interaction, they developed a friendship. Ac-
cording to Dr. Smith, gender, age, class, and addiction formed the basis
of their relationship. He astutely noticed that both he and a male dentist
were always addressed as “doctor,” but Dr. Catherine was often called by
her first name. He spoke about her: “I think we have the same kinds of
backgrounds. In the first place we’re younger than—I mean the typical

102 INSIDE ASSISTED LIVING

resident here is well into her eighties. I think there are half a dozen guys
in the whole complex, the rest are widows . . . [and] well, we both smoke
cigarettes, which I guess is a—probably not a very positive thing to have
to admit to. But we enjoy each other’s company. Put it that way.”

Throughout the many months of our research period, Dr. Catherine welcomed
my visits. Most times she was happy to talk, open to discussion on whatever was
headlined on CNN. There were times she was sleepy, angry, sad, or uncomfort-
able with leg pain. During the first year I was there, she was eager to implement a
program bringing together residents in assisted living and the dementia care
unit, and we brainstormed on how to put her plan into practice. Our visits were
more casual than formal. One afternoon, as we sat near the window, Muffin on
my lap, Dr. Catherine shared about her relationship with Mr. Peters, a “romanti-
cally interested” man who lived on the second floor. Other times Dr. Catherine
and I met up outside or in one of the lounges. Dr. Catherine was not one to be
holed up in her room, but also not one to be engaged in some planned activity. I
learned to tolerate the smoking lounge as a good place to observe conversation
between residents and an occasional well-liked staff member, especially on cold
days when it was too uncomfortable for an employee to stand outside the
kitchen door and smoke.
There was a period of time at the Chesapeake when two researchers were
present, often on the same day. We put in days ranging from two to ten hours,
attending staff, director, resident council, and food committee meetings; partici-
pating in and directing activities both in assisted living and the dementia care
unit; learning who does and does not watch Oprah and Dr. Phil; chatting about
local happenings while sitting on the porch; escorting a resident shopping or to
lunch; and visiting with and interviewing residents and staff in suites and public
spaces.
At the Chesapeake, the direct care staff assist residents throughout their
shifts, and this includes most dining room duties, except for cooking and wash-
ing dishes. We “worked lunch” and occasionally helped at dinner, pouring coffee
so the staff could take lunch orders, start the soup cart, and retrieve tardy or for-
getful residents. Eventually we graduated to serving all beverages, learning who
drinks what and how much and who groans at tepid coffee and confesses to caf-
feine jitters. We brewed coffee, served meals, set place settings, dished up ice
cream, bussed tables, and changed soiled tablecloths. After lunch, several of us

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 would sit around and talk about our kids, vacations, the residents, irritations, and
the work of assisted living. In this way, we learned about and thanked an over-
worked and underpaid staff.
Lunch also gave insights into resident and staff interactions and conversa-
tions in a formalized group setting to which everyone—all but the sickest of resi-
dents—had to go or be charged handsomely for room service. One afternoon
Mrs. Murtha, the most crotchety of residents, called me over to a seat in the café.
Could I please apply her eyebrow pencil, she entreated, as she wanted to cover a
bruise she received after her last fall. Try as I might, I couldn’t raise a color. Much
to my dismay, I noticed that I was applying a standard number 2 pencil! She
accepted my apology, scrounged around, and finally found her Maybelline at the
bottom of her walker bag. Pencil and lipstick finally applied, she stood up,
adjusted her overshirt, and stately walked into the lobby, ready to face all.

Getting to Know the Chesapeake

If Huntington Inn is the freighter model of assisted living (as described in

Chapter 4), then the Chesapeake is the cruise ship. We were more than
sympathetic to the care supervisor who lamented that neither she, nor,
sadly, her mother, could ever afford to live there.

Geographical Place
The Chesapeake is situated between two heavily traveled suburban roads,
a half block inward from a major four-lane thoroughfare lined with shop-
ping centers, restaurants, office buildings, and other sundry commercial
establishments. Bordering the home on its west side are the public library
and a large Christian church complex. The property is esthetically pleas-
ing and the grounds are meticulously maintained, with seasonal plantings
of tulips, begonias, or pansies and mature trees shading surrounding paths
and parking spaces. A sidewalk encircles the complex, and paths dovetail
into open spaces by the library and church and run adjacent to a fenced
yard designed for the dementia residents. Lining the sidewalk are a swing,
the occasional bench, and age-appropriate exercise stations installed by a
partnership between the Chesapeake, a local church, and a hospital.

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 The suburban community surrounding the Chesapeake is prosperous,
white, and educated, much like Dr. Catherine. Residents and families
frequently select the Chesapeake because of its reputation, appearance,
location, and proximity to family members. Often either relatives or
friends live in the area; for some the Chesapeake is the convenient central
location to which residents’ children, residentially scattered, can travel. In
general, residents or their families reflect, or aspire to, the community’s
social indicators.
Constructed in the 1990s, the Chesapeake is composed of two sepa-
rate multistoried buildings, one designed for independent living and the
other for assisted living, connected by a raised overpass. It is part of a large
for-profit chain oriented toward the new assisted living philosophy. The
assisted living portion of the Chesapeake accommodates 100 residents,
with 40 of these individuals housed in the dementia care unit. Vacancies
fill quickly, and the building consistently operates at full capacity.

Social Space
The adjoining church owns the land on which the Chesapeake was built.
Part of the rent paid by the corporation provides a resident subsidy pro-
gram administered through a board composed of church members and a
director from the Chesapeake. Residents who have “spent down” their
funds request support, and successful applicants have part of their fees
paid by the church. No Medicaid residents are accepted, and during our
tenure, to save money, several residents moved to military institutions and
less expensive homes, into independent living, and “back home” with
family. However, the directors try hard to work with families to allow
residents to age in place. Dr. Catherine had shrewdly invested her savings
and was financially comfortable, facing no risk of displacement.
Like most of its competitors, the Chesapeake is certified for level 3
care, the highest level recognized by the state. Clare feels that the dining
room experience is critical to residents’ acceptance of the assisted living
facility as their home. The Chesapeake therefore does not accept newcom-
ers with medical needs such as feeding tubes that would prevent the shared
dining experience. She is also concerned with the effect that health issues—
for example, a resident’s excessive weight or aggressive behavior—have

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on the direct care staff. When a resident becomes difficult to handle and
requires a two-person assist to get in and out of bed or a chair, that resi-
dent is either asked to move or to provide additional, private-duty care.
Clare does not, however, quickly dismiss ornery residents. Mrs. Gold
constantly complained and, when in her room, repeatedly rang for the
staff to attend to some small chore (pick up a tissue, get her gum, or check
her Depends). The staff protested to Clare, who took on the role of direct
care provider several times, interacting with Mrs. Gold and responding to
her calls. She later explained to the staff that the pettiness of Mrs. Gold’s
requests was to be tolerated as not all residents are docile and pleasant
inhabitants. The care staff do work to accommodate residents who return
from the hospital and rehab, and they support in-home hospice. Care
aides and directors go out of their way for residents for whom they hold
special affection, encouraging them to eat by ordering their favorite foods
and enlivening their physical appearance with jewelry and makeup. It was
not uncommon to hear that a staff member visited a resident in the hos-
pital, the nursing home, or a new assisted living residence.

Inside the Home

The well-kept state of the facility was noteworthy at the Chesapeake. The
front entrance is meant to attract, and the brass-handled, wood-paneled
doors swing outward, inviting visitors to enter. A private sitting area ex-
tends along the inside of the building, flanked on both sides by walls and
windows, separating this quiet space—a sort of “inside porch”—from the
reception area. Natural light and strategically placed fixtures in conjunc-
tion with rich colors such as wine, turquoise, and hunter green along with
spotless rugs, unscathed wooden tables, framed and subtle prints, and
recently reupholstered furniture evoke the air of a residential hotel. The
directors often introduced some new amenity like an exterior wood-burn-
ing stove, Bose speakers mounted outside above the drive-through over-
hang, and a jukebox in the café.
The lobby was habitually busy, a hub of congregating residents; it
even sometimes hinted at chaos, as nearly every resident and employee,
and all visitors, passed through this space each day. The receptionist sat
at her desk while she answered the telephone, fielded residents’ questions,
hooked a woman’s necklace around her arthritic neck, took orders for the

106 INSIDE ASSISTED LIVING

weekly restaurant excursion, discussed weekend plans with the executive
director, monitored the television remote control, and reminded forgetful
residents about daily schedules. Some residents took to napping in the
lobby despite the din, and when other residents and staff complained that
snoring women were not in keeping with the Chesapeake’s image, all but
one chair were removed by the maintenance staff.
Direct care staff members run up and down the grand staircase, just to
the left of the reception desk, too busy to take the elevator amid walkers,
wheelchairs, and pets. The entrance to the dementia care unit is through
an alcove in the rear of the first floor, directly in line with the front door.
When a code is pressed into the security keypad, walls separate, facilitat-
ing passage. Off the lobby to the right is a café where residents can grab
a cookie or a piece of fruit, pour coffee, or get a bowl of cereal; and
beyond is the dining room with fresh flowers set on the tables. To the left
of the lobby is a television lounge, separated from the reception desk by
a wall dominated by a large fish tank, and a hall of suites. On the second
floor, four corridors of suites extend from a large and sunny lounge, as do
the activities room, small offices and workrooms, the Wellness Center,
and the hair salon.
The resident suites include small single-bedroom and two-bedroom
units; most are private, but residents have the option of sharing rooms
and/or baths. While we were there, residents changed suites because a
“nicer” place opened up, because they needed to save money, or because
the death of a spouse prompted downsizing to protect future assets.
Throughout the Chesapeake, attractive sitting areas offer residents
comfortable public spaces to congregate, extending their small apart-
ments into common living rooms. Residents bring furniture and memen-
tos from home. Dr. Smith brought a work table and tools to craft airplane
models; Mrs. Ferraro connected a computer to keep up with friends, surf
the Web, and download knitting patterns; and Mr. Peters set up as much
acoustical equipment as he could fit to play operas. Most residents have
a television, a few with large screens. Residents buy groceries on the
weekly food run to the supermarket, and some families deliver snacks and
necessities. This enables people to eat in the privacy and comfort of their
rooms, where several use coffee pots and microwave ovens. This allows
them to indulge in food that the Chesapeake’s chef does not cook (though
some residents say that they should be reimbursed for meals skipped).

D R . C AT H E R I N E AT T H E C H E S A P E A K E 107
Residents are, however, carefully monitored by the staff to make sure that
no one is skipping too many dinners.

Spending Time
On most days, the Chesapeake is lively. Bingo, entertainment from school
groups, manicures, exercise classes, Bible lessons, birthday parties, sing-
alongs, apple pie socials—an innumerable array of activities are planned
to help residents fill their days. Monthly paper calendars are printed and
distributed, and some residents keep them close at hand in their purses or
walker bags; there is also an electronic daily calendar near the elevator.
Family members pass in and out picking up relatives for medical appoint-
ments, shopping, and lunch. Several residents go off on their own beyond
the grounds. Mrs. Krensky pushed her oxygen tank on her wheelchair
when walking to the library; Dr. Smith drove his motorized scooter to the
pharmacy; and volunteers chauffeured Mrs. Cooper to her church to
count the Sunday collection and Ms. Dobson to a local elementary school
to teach reading. Special events are planned throughout the year; the
spring dance with nearby uniformed military personnel is a perennial hit,
as are the Valentine dinner, the Mother’s Day Tea, and the annual Christ-
mas extravaganza, with band, wine bar, and scrumptious finger foods.
Unless tired or unwell, many residents spend large segments of their
day walking around the Chesapeake, talking to other residents and the
staff. Clare realizes that some residents have never been gregarious and
says she doesn’t expect them to change now that they have moved into
assisted living. Mrs. Drake adopted a pattern of walking outside around
the Chesapeake at least seven times a day to keep in shape. She was trying
to combat the image visualized in one of her pet phrases, “golden age gone
rusty.” There are a few whose desire to remain solitary between meals is
respected.
Dr. Catherine felt it important to become involved in the Chesapeake.
“I like being helpful to people, and there are a lot of people who really
need some cheering up.” She bundled her own cigarettes in threes for
a resident forced to collect and smoke butts off the pavement because
the other woman’s daughter refused her permission to smoke, and she
visited with a blind neighbor who she felt was ignored by her daughter.
Almost from the beginning of her move Dr. Catherine contrived an activ-

108 INSIDE ASSISTED LIVING

ity whereby residents in the assisted living wing would interact with peo-
ple in the dementia care unit, keeping company or offering support. She
described the lack of social interaction in that unit: “All my friends sit like
stones, all in a row.” Regarding her proposed activity, “If we ever get
this . . . thing off the ground, it will be wonderful.”
The Chesapeake, while vocally in favor of her project, had no re-
sources to help with this activity. Dr. Catherine tried to get her neighbors
and dining partners on board, but only two steadfastly committed. Dr.
Catherine was surprised to find that residents and their families feared
dementia. One woman on her corridor expressed interest in participating
in visits to the dementia unit until her daughter heard about it. Dr. Cath-
erine related the story: “I had this one lady who was so gung ho about
it . . . and her daughter said, ‘Oh, no—she can’t go near those people.
No, no, no—she can’t go—we’re not going to allow her to go near those
people.’ It’s as if they think it’s contagious. I felt terrible. . . . However, I
said to them, ‘You know, of course that’s your decision and choice,’ and
it’s not something we can force on anyone. . . . They must have had a very
serious talk with her because . . . she said, ‘Oh, no, no—I can’t go in there.
I can’t go in there.’ You can’t force it.”

No One Is Typical
While we were at the Chesapeake, we met residents spanning 60 years in
age, in couples and as singles, all with varying backgrounds and reasons
for moving there. Several residents had moved into the Chesapeake when
it opened, a few came for respite, others tried assisted living and relocated
to the independent apartments (several made the transition between in-
dependent and assisted living more than once), several relocated, a few
entered a nursing home or died, and a few quietly but quickly were chan-
neled into the dementia care unit. The more time we spent at the Chesa-
peake, the more we appreciated Clare’s philosophy that each resident is
different, which helps to explain the fact that many of the Chesapeake’s
rules and policies are malleable.
Staff members varied in ages and backgrounds as well, from young
women right out of high school to Gina in her fifties. Some were attending
college and were working part time; others focused on full-time work and
their families. Several held two jobs. Care aides stopped in on their days

D R . C AT H E R I N E AT T H E C H E S A P E A K E 109
off to visit and help when they were in the neighborhood, brought in their
children on school holidays, or ran an occasional errand for a resident.
The Chesapeake promotes employment advancement from within, and
during our tenure we observed a cook, care aides, a housekeeper, and a
business assistant promoted to higher positions, and also an upward shift-
ing of positions in marketing, human resources, reception, and care super-
vision. We also observed as staff members quit and new people began
working; however, here at the Chesapeake, employee turnover was not as
much an ongoing concern as elsewhere in assisted living facilities.

A Cut Above
The Chesapeake prides itself on its reputation. As symbols of status, the
managers wear business casual, and direct care staff members dress in
slacks and Chesapeake-monogrammed shirts. Professional grounds crews
maintain the landscaping. Directors sustain contact with local aging agen-
cies and associations and are active in regional corporate meetings. The
Chesapeake focuses on safety, with technological solutions to monitor
potential problems: direct care staff carry beepers and cell phones, resi-
dents wear wandering alert bracelets, and residents’ telephones signal for
help if bumped off the cradle for too long. The staff check on residents
every two hours during the night, but a resident can opt out by signing a
consent form that is also signed by the resident’s family. The corporation
mandates that all employees be English-speaking so that they can quickly
respond in an emergency.
Appearance was a central and crucial factor in Dr. Catherine’s daugh-
ter selecting the Chesapeake. In her interview, Susan told us: “Mom’s
biggest fear in life has always been that she would end up in a nursing
home, and so that was the other reason I think that the Chesapeake so
appealed to me because it tries so hard to not look like that. And it’s
not.”

Life at the Chesapeake

Even with all of the Chesapeake’s activities, residents’ lives revolve around
meal times. Almost everyone is on time, many congregating beforehand

110 INSIDE ASSISTED LIVING

in the nearby lobby, café, or TV lounge. Direct care staff encourage early
line-up partly because their job is to cue the forgetful about the upcoming
meals, and to walk and wheel those needing help to the dining room.
When the staff are in place to take orders and serve, the rope is pulled
back, allowing the flood of residents to find their seats.
Residents are assigned seats to minimize disagreements. The shift
supervisor places new residents with those she believes to have compatible
personalities; if there is dissension or preference, the supervisor makes
a change. Residents’ photographs posted on a board directly inside the
kitchen area help staff members learn faces and names.
Some residents seem tolerant of dementia and physical disability and
help each other. Mrs. Krensky was solicitous over her blind tablemate,
helping to cut her food, while at another table three women kept Mrs.
Martin afloat and out of the dementia care unit by making sure she ate
and directing her toward social activities. This is not to say that conflicts
did not occur, but the most raucous individuals were placed at tables for
two to avoid disturbances and allow the meals to flow smoothly.
Not only did residents come to meals regularly, but also food was a
popular topic of conversation. In addition to a resident council, the Ches-
apeake had a food committee, which held monthly meetings with the
assistant director and the chef, offering suggestions and making com-
plaints. Despite this system, the two most vocal members told us that
“nothing ever gets done.” The chef did solicit recipes from the residents;
although he claimed to have made them, no residents recognized them.
The chef also attended resident council meetings, but to the annoyance of
the most actively engaged residents, some who attend merely sit in silence,
preferring to grumble quietly during meals rather than complain publicly
at a gathering. Although Dr. Catherine referred to the topics at the council
meetings as “mundane,” she still participated in “gripe sessions” over
menu options, portion sizes, and speed of service.

Companionship
Attachments develop among residents and staff, friendships blossom, and
occasionally couples form. Dr. Smith and Mr. Peters became Dr. Cathe-
rine’s two closest companions; all three were opera aficionados and well-
traveled. They conversed in the smoking room and watched operatic

D R . C AT H E R I N E AT T H E C H E S A P E A K E 111
videos in Mr. Peters’ suite, imbibing alcohol that Dr. Smith purchased and
Mr. Peters’ family provided. When Dr. Catherine requested a change of
seat in the dining room to be with them, she was criticized by Mrs. Mitch-
ell for wanting “to sit with the Ph.D.s” and ridiculed by a staff member
for wanting “to sit with the men.” Eventually they did share a table in the
dining room along with Mrs. Cooper, an amiable woman who had lived
one block from the Chesapeake for all of her working life.
Mr. Peters, a recent widower, sent Dr. Catherine flowers, made sexual
overtures, invited her to vacation on the beach, and hinted at marriage.
Although flattered by his advances, Dr. Catherine was alarmed by Mr.
Peters’ verbally abusive manner, and she questioned the nature of his at-
tention. Dr. Smith became the closer and more stable friend, sharing her
interest in the dementia care unit. He and his wife had entered the Chesa-
peake together, an arrangement forced on them by their son. Dr. Smith’s
health was failing, and he had not noticed that his wife was showing signs
of dementia. Soon after their move into the Chesapeake, his wife was
transferred to the dementia care unit without consulting him and was then
moved to a facility specializing in dementia care beyond that provided at
the Chesapeake. He and Dr. Catherine voiced essentially the same history;
both had been placed in assisted living by their children without their in-
put. Dr. Smith was philosophical about the residents and assisted living:

Most of the people here . . . have a story, and the story has a same-
ness about it. They have been placed here by younger relatives who
are either unable or uninclined to give them the kind of care that they
need and they have been—Are you familiar with the term “ware-
housing?”—and they’ve turned over their powers of attorney to their
kids and had their homes sold. And they get frequent visits, some
more often than others, from their kids. But if you were to sit out
here on Sunday on a nice day, and just watch the number of people
who go out Sunday morning and come back about 3:00 o’clock in
the afternoon—you know, their kids have done their duty. They have
given service to what they regard as being necessary duties to their
parents, and they’re good for another week. [Dr. Smith chuckled.] I
think that this business of sticking superannuated people into a clois-
tered environment is relatively new. People used to look after their
elderly people. Every family had a maiden aunt, who looked after

112 INSIDE ASSISTED LIVING

 Father or Grandfather or somebody. But it’s a whole different climate
now.

The Independent Dependent

As described in Chapter 1, resident independence is a touted value of the
new assisted living philosophy. Of the six assisted living residences we
studied, the management at the Chesapeake is perhaps the most vocal
about its commitment to this value. Yet “independence” is framed in ways
that people outside assisted living might not recognize. For example, resi-
dents’ abilities to make decisions are constrained by their own families
and the assisted living staff and management.
The Chesapeake, like most assisted living settings, does not provide
new residents with an orientation guidebook to help them learn the rules.
Dr. Catherine early on felt the pressure of living in an institution. “I think
everybody does feel that they’re kind of locked up. They’re watched for
all kinds of things. After the first meal I had here, I went out for a walk
and I walked a long time, and they had two people out finding me. And
I’m so used to walking and doing those things that I was kind of horrified
that I just couldn’t go out and walk.” She soon learned that she was not
permitted to walk to the nearby shopping center or church. “We’re really
not supposed to do that. . . . When they were out following me, I didn’t
know I was doing anything wrong. I was just going for a big walk. I
thought, oh, my gosh—what is this—they are running after me!” “Oh, I
know,” she added, “they are all liable and there are all those issues that
they have to live with too.” Dr. Smith, in a later interview, emphasized
this idea. “Most of the residents here are fairly independent. They walk
around this place, but they have a—I don’t know—they must have some
kind of spy network or something that catches people who are trying to
cross the road and stuff. They do come down on people who are trying
to beat the system.” Other residents described similar experiences.
For Dr. Catherine, weekly field trips to local restaurants, organized
by the Chesapeake, became one of her few opportunities to exert com-
mand over her life similar to the position of power she held in education.
On one of these excursions she corralled the maintenance director to
argue for installing an air filter in the smoking room, and regularly at

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lunch outings she ordered wine or cocktails, ostensibly prohibited to her
at the Chesapeake because of her alcohol abuse.
Other residents, too, exercised freedom in personal ways. Mr. Peters
boasted publicly of his trips to buy liquor and cigars; another confided
that she sidestepped the supermarket and “ran into” the adjacent clothing
store on a recent grocery run. A resident purchased liquid soap for wash-
ing lingerie (detergent is defined as a chemical, needing signed consent to
keep in a suite); and Dr. Smith, at first skeptical when his son presented
him with a motorized scooter (“What would I ever do with one?”), soon
found himself “enchanted” with it: “It has opened up a whole new world
for me just to be able to get out of this place. Four walls, you know, can
be very oppressive.” Initially Dr. Smith imagined that residents might be
jealous or resent his “special toy.” But, he reported, “It’s been just the
opposite. I have been very nicely surprised.”
Dr. Catherine, too, was happy for her friend (“He gets to go out and
do his man thing”), but the gradual loss of independence stalked her. She
challenged the Chesapeake’s policy that the receptionist distribute only
single cigarettes to residents. As noted earlier, residents are not permitted
to keep cigarettes in their suites. Rather than handing over her carton, she
sometimes kept it: “I’m supposed to, but I told them I’m a little bit too old
for that. I don’t need to do that, thank you. They haven’t forced me to do
it.” (In reality, staff members comb residents’ suites looking for contra-
band.) Dr. Smith, in a separate interview, commented, “I had to beg from
the receptionist two cigarettes at a time.” His son ordered a delivery of
beer and cigarettes from a local establishment, but they were intercepted
at the desk. The smoking policy is intended to provide smokers with op-
tions while still protecting the safety of the larger group—one of the
restrictions imposed by group living that some assisted living residents
find difficult to accept.
Dr. Catherine objected to other policies at the Chesapeake, one being
that Tammy, the activities director, had to pay for purchases on the weekly
supermarket run. This policy denies residents control over their money
and the privacy of their purchases. Another policy restricts over-the-coun-
ter medications in the suites. “I bought an extra thing of Tylenol at the
grocery store, and Tammy said, ‘You have to put that in the nurse’s office,’
and I said, ‘I don’t choose to do that.’” Sometimes the nurse would be sent
to a resident’s room to ask for the over-the-counter drug. She didn’t always

114 INSIDE ASSISTED LIVING

get it. (Several residents showed us where their caches of over-the-counter
drugs were hidden.)
Six months into living at the Chesapeake Dr. Catherine stated, “You
see, one of the things I resent about this place—or any place like it—is
that it takes away one’s independence.”

Risk-Taking
Making policy is an ongoing task for the Chesapeake management, espe-
cially policies that concern risk. Residents and/or families may be asked
to sign negotiated risk agreements that permit the resident to do things
that conflict with facility policies. The risk agreement specifies the man-
agement’s concern and asks the resident and his or her family to accept
responsibility for risks associated with the resident’s actions. For example,
negotiated risk agreements were written for such behavior as “wander-
ing” and refusing to use a monitoring bracelet, refusal of the every-two-
hour nightly bed checks, walking to a nearby shopping center, drinking
alcohol, and storing cleaning chemicals (i.e., hand laundry detergent) in
rooms. As assistant executive director, Clare looks at each individual case
and resident before making an agreement, and maintains that there are
no hard-and-fast rules: each case is “negotiated.” Regarding walking off
the grounds, she said: “You know . . . if I have a resident who is not con-
fused and feeling O.K. with it—I let them go. I have a resident who just
moved in—he lives . . . kind of right around the corner. That’s where his
house is—and he and his wife just moved in and every, almost every day
he walks over to his old house—and his daughter says that is fine with
her. If it’s fine with her, it’s fine with me. And he did sign—the daughter
did sign—a risk form on that.”
One son we interviewed was of two minds about allowing his mother
to cross the street. On the one hand, she had lived one block from the
Chesapeake for close to 50 years and knew the perils of the roadways. On
the other hand, she had both depression and dementia and had recently
lost her husband. The idea that she might attempt suicide plagued him.
He chose not to sign, and his mother was not permitted to walk across
the busy street.
Mr. Peters was the first resident to bring a motorized scooter into
the Chesapeake. Much to Clare’s chagrin, he took it everywhere, from the

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neighborhood liquor store to the four-lane commercial highway. One
time he ran out of charge and sat along the road until he was spotted, by
chance, by one of the Chesapeake’s marketing staff. Clare noted, “I had
a meeting with his family about this and they signed a negotiated risk
agreement, saying, ‘Our Dad is free to come and go as he pleases . . . We
understand he takes his wheelchair—or his motorized vehicle out and
that’s fine with us.’” When Dr. Smith received his motorized scooter sev-
eral months later, a facility policy for its use outside the building was
firmly in place.
To Barry, the executive director, the Chesapeake is a “managed risk
community.” Risk taking is acceptable if residents are to retain any inde-
pendence. He explains. “It’s a gray world. . . . A lot of things can hap-
pen. . . . [Am I] willing to take those risks to give those residents the inde-
pendence . . . for them to live out the rest of their life the way they want
to?” He is. For Barry, it is the family’s and the resident’s right to choose
the level of risk, as long as that level is within Chesapeake corporate
policy. It is “their right of how they choose to live and what environment
they want. . . . I mean, anything can happen, and that’s what we mean by
managed risk. And we’re very honest with the families; anything can hap-
pen here.” Barry went on to give examples, such as tripping over potted
plants and knickknacks. “But at least you know we’re going to do every-
thing we can to manage that risk.” As Clare commented, “There is only
so much you can do.”
As Dr. Catherine’s health improved in the first few weeks she lived at
the Chesapeake, she questioned her move and the appropriateness of hav-
ing to live there. She realized that her daughter wanted her safe after her
fall. “But I keep telling her now—I’m fine now and there is no reason for
me to be here. And that’s what everybody says in the place. They all say—
why are you here?” At that time, her dementia was not readily noticeable
to other residents; partly because of her intelligence and her sociability,
she was able to compensate for her increasing confusion. But over time,
that changed.

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 The Second Transition

From the time Dr. Catherine moved in, the people closest to her knew that
she would most likely be relocated eventually to the dementia care unit.
Her daughter, Susan, had considered the probable transition when select-
ing the Chesapeake. Clare, as assistant executive director, has sufficient
experience in the field to predict the outcome, and Dr. Catherine herself
related her encounter with a psychiatric social worker who told her that
she would have severe dementia eventually. For Clare, this transitional
process was exceptionally long and complex because Dr. Catherine is such
a “unique case.” Her transition was “hard” because she was often “so
lucid” and “sometimes she’s so good.”
Clare finds families challenging and difficult to convince when the
staff at the Chesapeake decides it is time for their relatives’ move into the
dementia care unit. Despite documented assessments and agreement on
entry, Susan, too, questioned the timing when Clare suggested that the
move was imminent. Residing in assisted living allows the family hope for
stability; movement into the dementia care unit forces them to recognize
and accept their relative’s decline. Once in dementia care, residents rarely
leave.
As assisted living coordinator, Richard is quick to pick up on the
frequency of denial by both families and residents. Reasons for transition-
ing need to be documented and warranted by the staff “because you have
to justify [the move] to the family, because the family doesn’t want to see
Mom and Dad decline.” As for residents, “it’s so hard when you’re deal-
ing with the human mind . . . they don’t want to see themselves decline.
Some of them understand and get frustrated by the fact that they are de-
clining. A lot of them sink into a depression because of that.”
Dr. Catherine’s second transition, the one into dementia care, slowly
progressed over three years. She demonstrated confusion in lighting ciga-
rettes, using eating utensils, and finding her place in the dining room. She
needed direction to her suite, a short walk from the television lounge, and
she lit a match next to an oxygen tank, to the horror of its owner, Mrs.
Krensky. Susan hired dog walkers, and when their twice-daily visits proved
inadequate, direct care aides walked Muffin. Clare planned early on for
both Muffin’s and Dr. Catherine’s transition together into the dementia

D R . C AT H E R I N E AT T H E C H E S A P E A K E 117
care unit, but the dog required too much of the staff’s time, and, to Dr.
Catherine’s great sadness, Muffin was adopted by her walkers. As time
went on, Dr. Catherine disrobed in public, had frequent toileting acci-
dents, demonstrated an inability to communicate with other residents,
displayed problems with eating, and talked to what she believed was an-
other person in the mirror. She was repeatedly evaluated by the staff, and
reports were made regularly to Susan.
Dr. Catherine’s physical condition also gradually changed. She put on
weight, her breathing was sometimes labored, and her walking slowed
when she began to drag her feet. There was also a decline in her balance,
ability to walk straight, and lower body strength. She rested frequently
and intermittently while walking about the Chesapeake, and negotiating
stairs became increasingly problematic.
Dr. Catherine had been a visible resident since her move-in, spending
at least as much time outside her suite as in it. Over time, Mrs. Krensky,
Mrs. Mitchell, and Mrs. Randall, all active residents at the Chesapeake,
began to comment on her decline. Shouldn’t she be “back there,” Mrs.
Krensky wondered, referring to the dementia care unit? When Dr. Cath-
erine left for a visit to her daughter’s home, Mrs. Mitchell assumed she
had moved into the dementia unit; she wondered what life was like “back
there” but never initiated a visit to see it for herself. Other residents were
more kind, helping her along in getting wherever she needed to go. Mr.
Peters had long since left the Chesapeake for another assisted living fa-
cility, and Dr. Smith, perhaps because of depression or embarrassment,
or because Dr. Catherine’s decline resembled his wife’s, ignored her. Dr.
Catherine had either forgotten or disregarded the service program that
previously excited her and stopped visiting friends in the dementia care
unit. When her neighbor moved there, Dr. Catherine explained the transi-
tion as one in which Mrs. Wood “graciously” accommodated her daugh-
ter’s wishes. Hearing this comment caused us to wonder if Dr. Catherine
anticipated her own move.
The one problematic issue that Susan had with the Chesapeake was
the staff’s inability to control her mother’s drinking, especially because
her dementia was alcohol-related. The staff told Susan the drinking could
be discouraged but not curtailed, as it occurred in other residents’ rooms.
Richard, the assisted living coordinator, agreed to be the “enforcer” be-
cause drinking caused a month-long rift with her mother whenever Susan

118 INSIDE ASSISTED LIVING

brought up the topic. Susan also appreciated Richard’s offer to make a
policy specifically addressing Dr. Catherine’s problems. (In an interview,
Richard told us that his goal is to make families’ lives easier.)
Over the years we were in contact with the Chesapeake, Clare worked
with Susan to prepare for her mother’s transition, and called their rela-
tionship “close.” Susan finally agreed to the move if a suite opened in the
dementia care unit that was identical to the one her mother lived in out-
side its walls; this, she felt, would make for a seamless adjustment. When
one became available, Clare felt the time was right, and Susan and her
brother agreed. Dr. Catherine “loved” her new room and “was fine with
moving.” After the first week, she no longer expressed any interest to leave
the unit.

I visited with Dr. Catherine after her move. She had lost weight and her breathing
was regular. I am sure she remembered me, not as the researcher who inter-
viewed her but as a friendly face somewhere from the past. She asked about my
family and told me stories about the people sitting around us, many of whom I
knew; I recalled Dr. Smith saying that everyone has a story. Later, as we walked
down a hallway toward her room—she was eager to show it off—I found her
slow and unsteady and wondered about her using a walker. I felt she could possi-
bly fall, as she clutched my arm tightly. I asked a care staff member how far down
the hall did Dr. Catherine live. “Dr. Catherine?” In surprise, she asked, “Dr. Who?” Dr.
Catherine’s title did not follow her into the dementia care unit, nor was she lead-
ing me in the right direction. Catherine lived on the other side of the wing.

Final Thoughts

Values

Independence is a core tenet in assisted living philosophy. The popular

definition of independence as freedom of choice, however, cannot always
be realized in assisted living. Residents who have cognitive impairments
and physical disabilities must rely on others, including their families and
the assisted living staff, for guidance and direct care. Dr. Catherine was
clear in telling us that assisted living stripped her of that valued trait,
with “independence” meaning little more than menu choice and degree
of participation in social activities, yet she did bring her dog to the Chesa-

D R . C AT H E R I N E AT T H E C H E S A P E A K E 119
peake and made decisions about what she did and with whom on a daily
basis—as long as she did not leave the property unescorted and con-
formed to the implied rules in the assisted living setting. Safety and inde-
pendence are trade-offs viewed differently by residents, family members,
and administrators.
In our interviews with families and staff, the topic of safety frequently
surfaced. Certainly safety is important, but the degree of protection pro-
moted by the family and/or staff can be at odds with the residents’ prefer-
ences. Susan described safety as a prime concern in selecting the Chesa-
peake. Even Dr. Catherine herself realized that problems of risk exist, yet
her very sense of self was as a capable and independent woman. Accept-
ing the limitations imposed by assisted living staff, management, and her
daughter presented an ongoing adjustment for her.

Lifestyle Change
By its very nature, assisted living is an institutionalized residential setting,
in some ways antithetical to the ways of life residents held before they
entered. After living a private and sometimes solitary life before assisted
living, residents at the Chesapeake interact on a regular basis in close
quarters with more than one hundred other people. They must adapt to
loss of privacy, for people enter their rooms unannounced, and the staff
either open doors and knock (in that order) or use a key to gain entrance
at will. Mrs. Podesta, a woman with whom we spoke often, lamented one
afternoon that her reputation was “ruined.” Tammy, the activities direc-
tor, had observed her drinking a glass of wine, assumed she was inebri-
ated, related the incident to the entire second-floor staff, and sent a letter
to her son. She eventually signed her own risk agreement to drink two
ounces of alcohol per night to help her sleep. The accommodation to
assisted living requires adjustment to a new physical space, a changing
lifestyle, and an aging body, all at the same time.
At the Chesapeake, assisted living is a cross between a private home,
a residential hotel, and a medical clinic. Meals are served in an elegant
dining room, and residents collect for small talk in the lobby. However,
as Mrs. Wood commented one morning, “If this is my home, why can’t I
come to breakfast in my bathrobe?” Learning what signifies home or
hotel, another lifestyle change, is sometimes confusing and rarely rational.

120 INSIDE ASSISTED LIVING

Another example of the public nature of private behavior involves Mrs.
Drake. One afternoon when she ran into the café wearing a pink house-
coat to retrieve a sweater she realized she had left behind, the care staff
questioned her cognition based on her decision to appear in public in her
nightgown!
Although not a nursing facility, an assisted living residence by neces-
sity involves medical care. The emphasis on wellness belies its true nature,
that of caring for residents’ health needs and dispensing of medications on
a regular basis privately in rooms and publicly in lounges and the dining
room. Relying on a medical technician to receive pills in view of other resi-
dents and staff, a true lifestyle change, might further erode some residents’
sense of independence by making a private act a public occurrence.
Communication in assisted living is also compromised. Residents of
the Chesapeake bemoan not being kept informed on the whereabouts and
health status of their friends and neighbors. They complain that no one
takes heed of what they say at council and committee meetings and feel
these gatherings are a sham. Residents also deliberately hide signs of de-
cline to maintain an identity as a fit and functioning person and avoid
paying higher fees for increased levels of care.

Resident Transitioning
We found the residential population at the Chesapeake to be diverse and
somewhat transient. We interviewed residents ranging in age from 49 to
104. These people came from varying occupations, educational levels, and
geographic backgrounds. Although in assisted living facilities many indi-
viduals decline and go to the hospital or skilled nursing, we also noted
that some residents remained stable. Several do remain for years in one
long-term care setting. Others move back home (mostly with relatives),
into independent living, to another assisted living or group home, or to
another institution offering a different type of care, such as a dementia
care facility. After three years, the youngest woman residing at the Chesa-
peake, Ms. Dobson, a teacher who had been in a car accident, defied all
odds and moved, with her service dog, into a townhome accessible to her
motorized chair and near a supermarket.
Residents who leave do so mostly on their own volition; some, how-
ever, are asked to leave because they have not paid their bills, have spent

D R . C AT H E R I N E AT T H E C H E S A P E A K E 121
down their funds, have increased medical needs, exhibit aggression or in-
tolerable behavior, or refuse movement into the dementia care unit. Some
are asked to leave because they refuse to accept services. Clare said she has
had many conversations with residents about their negative attitudes
toward the staff and has tried to explain that “they are here to help you.”
If the situation becomes uncontrollable, she has no problem discharging
residents.
Families are encouraged to plan for the future. Dr. Catherine’s daugh-
ter Susan, despite all her preparations for her mother’s care, found that
finalizing decisions was difficult. Even after hiring an elder care consul-
tant, visiting assisted living homes, and talking with friends, she felt at
odds with the process. She concluded that there is no good, reliable way
of getting a family member situated. Speaking about her mother’s move
into assisted living, Susan said: “When I was younger I couldn’t under-
stand why it seems to happen this way. When you hear of people’s stories,
so often . . . there’s some calamity that occurs, and then there is a crisis
and you have to do everything in a crisis. And that seems so stupid, when
it could be something that you could plan for, and you could plan for it
together, and everyone could have a say, you know, in the decision mak-
ing. My understanding now is that, I now understand why it never works
that way, or seldom works that way, because I can understand the older
family member wants to maintain themselves in their own home. And
until there is proof positive that they can’t, which usually comes in the
form of a calamity, then you’re at odds. And so I don’t see that there is
usually a positive planful way to do this.”

The Goal of the Chesapeake

An assisted living residence is often defined by what it isn’t—a nursing
home. Clare remarked in one interview that nursing homes have a nega-
tive reputation, and we heard this repeatedly from families, residents, and
staff. Assisted living, she pointed out, “has a reputation of being nicer,
homier, more comfortable than nursing homes,” and she speaks of it as a
good option for individuals seeking long-term care.
Who does well at the Chesapeake? According to Clare, those who do
are the “social butterflies like the Ms. Mitchells and the Ms. Woods, and
the, you know, people that like—even someone like Glenda Martin, who’s

122 INSIDE ASSISTED LIVING

so pleasantly confused, but loves to be around people, loves interaction.
Those types of people, I think do really well. Although you have your
apartment, it’s still not a private place. They’re eating with all these people.
. . . you have care aides in and out of your room checking on you, and I
mean, there’s a lot of commotion. There’s a lot going on. So I think the
people that thrive on having company and so forth do well here.”
Despite the apparent emphasis placed on family-administration over-
sight and communication, Clare and Barry, directors at the Chesapeake,
both feel that the residents are their main clients, and they echo corporate
philosophy to meet residents’ needs. “My goal,” maintains Clare, “is to
make sure that the residents are happy.” Although families need to be
satisfied, “number one, first and foremost, are residents.”

D R . C AT H E R I N E AT T H E C H E S A P E A K E 123
 SEVEN

` Mr. Sidney at Laurel Ridge

I sat in my car in the small parking lot facing the entrance to Laurel Ridge. I
found the building attractive in the late morning sun, and although there is
minimal landscaping—six red geraniums in the summer or six purple pan-
sies in the fall, interspersed with a few hardy and drought-resistant greens—
the tall lush trees overlooking the grounds from the adjoining property give
a parklike feel to the home. A large mobility transport van backed up and
pulled away, probably taking someone to dialysis or a doctor’s appointment,
and the ice cream delivery truck drove out a little too fast for my comfort.
Mr. Howard’s sister pulled up alongside me, smiled and nodded, and
grabbed his laundry from the trunk. (Mr. Howard, in his early fifties, has a
brain tumor, and one of his eight siblings in their staunch Catholic family
takes a turn visiting each day, shuttling him to the Basilica for walks and
minding his care.) I reminded myself that I needed to select a resident on
which to focus, to write about. Each resident has a compelling story. I sat
there asking myself: whom should I pick? I had been ruminating on this
question for weeks.
After gathering my notebook and tape recorder from the front seat, I
spotted Mr. Sidney in his wheelchair, sitting off to the side of the front door,
head back, enjoying the sun. “God’s signature” is how he described the
clouds to me one afternoon. He was dressed to “go out,” never leaving his
room without a jacket, sports cap, and waist pack, no matter the weather. He
is always polite, pleasant, and pensive, and I thought of him often speaking
positively of life from his perch of ninety-seven years. From Mr. Sidney I have
learned to appreciate a calm approach to life and death, and I am grateful
for his willingness to share in the research. I decided that Mr. Sidney’s life
would make for a fine story.

124
 W e first interviewed Mr. Sidney in the spring of 2005, four and a
half months after he moved to Laurel Ridge. We had already
met several times, and he could always be found at exercise class at ten in
the morning or at the discussion or word game afterward. Exercise is
what is “very good” about Laurel Ridge, he said; it tests not only the body
but also the mind. “Some do it,” he said, “to live longer.” He did it “to
feel better; it keeps me alive.”
Mr. Sidney attended all activities with Mrs. Perkins, a resident he met
within days of his arrival. They ate together, kept company, and “watch[ed]
out for each other.” Staff at Laurel Ridge referred to them as a “couple”;
an observant nurse told us, “they talk.” Drawn together as two of the few
cognitively astute residents, they both had lost spouses, were childless,
and had few close living relatives. Mrs. Perkins had one niece who orches-
trated her care. Della, the great-niece of Mr. Sidney’s second wife, handled
his finances, purchased groceries and medical supplies, and brought him
to her home for holidays and special events. Mr. Sidney called Della his
“guardian angel” and acknowledged the good care she provided.
In this chapter we discuss an expanded notion of what it means to be
family and the part “fictive kin” play in resident oversight. We examine
what life is like in a locked setting, where residents with severe dementia
freely roam throughout the home; the effect a financially stressed and
census-challenged assisted living facility has on its population; how eth-
nicity is perceived; and the notion of friendship in the lives of residents at
Laurel Ridge.

Introducing Mr. Sidney

Mr. Sidney exuded a commanding presence. A tall man, even in his wheel-
chair, he appeared fit. He recognized that his memory was failing and his
eyes were bad.
“This old mind is kind of tight,” he said, and though he was not
“jumping up and down,” Mr. Sidney found that life was “not too bad.”
On the table in his room he kept a game board and challenged himself,
moving the marbles according to varying strategies, which he said helped
keep his mind intact. Although he felt that his body was weakening, he
had what his favorite nurse called “a young man mind.”

M R . S I D N E Y AT L AU R E L R I D G E 125
 One of three sons in a Navy family, Mr. Sidney moved among several
states while growing up, his family finally settling in Washington, DC.
College educated and job searching right after the stock market crash of
1929, he eventually joined the military, completing officer’s training dur-
ing World War II. He spoke eloquently yet sorrowfully of the devastation
he witnessed on the beaches and bombed sites of Japan. In spite of the
war, Mr. Sidney enjoyed living abroad, especially in Australia, but was
prompted by his family after the death of his father to return to the States.
He took a position with a transportation division of the U.S. Postal Ser-
vice, which he liked to say was affiliated historically with the Pony Express,
and remained there until age 59. For the next six years he worked in retail
sales and at the time we interviewed him had been retired for more than
30 years.

Moving to Assisted Living

His great-niece Della and his physician both felt that Mr. Sidney was
reaching a point where it was becoming untenable for him to continue
living alone for several reasons. He had already given up driving because
he found himself going through red lights and had decided to stop “before
the cops caught me.” He was eating poorly, even by his own admission.
His doctor suggested Laurel Ridge as a potential home; Della and her
mother knew of it, and they arranged for his move-in. Mr. Sidney eventu-
ally and reluctantly agreed. He expected to walk through its doors, but
instead, just before leaving the hospital after a routine admission, he fell
and hit his head on the edge of a table, giving him a severe blow to his
skull. He told us that he was “totally independent” but came to Laurel
Ridge “as an invalid from just being a healthy person. I came over here
as a cripple.” He realized that he would have moved irrespective of the
fall, but it grated on him that he was now an invalid: “If I hadn’t fell there,
I would probably still be in here, but I wouldn’t be an invalid.”
Most of the time Mr. Sidney found Laurel Ridge to be a “good place”
where he was well cared for. The staff, he thought, was “just like family,”
but as with family, he had issues. The staff was “worked to death,” and
so he often did not get the help he needed, especially because he looked
self-sufficient and rarely voiced concern. He called the place “cheap”: “If
you’re not paying for the best, you can’t live by the best,” he told us. “This

126 INSIDE ASSISTED LIVING

is not a Wisconsin Avenue joint—not by a long shot,” referring to a street
in Washington, DC, long known for its high-rent status. Mr. Sidney often
talked about the frailty of the residents and their apparent low level of
physical acuity: “Fifty percent of the people easily are asleep all the time—
they sleep in exercise class!” He appreciated having “nursing care” on site
24/7 and having his medications administered but felt that “the medi-
cines . . . should be the best department in here . . . but it’s not. It’s the
worst.” (The best department, he asserted, was housekeeping.)
Mr. Sidney was comfortable at Laurel Ridge but wished it would
hire fewer foreign staff members. “The help here are all foreigners. Just
about all of them . . . and you can’t understand them, and they don’t stay,
and some aren’t worth a damn, and you can’t get along with them. They
should never have a foreigner handling the medicine, and they will do
that.” This matter of ethnicity and staff surfaced in talk with other resi-
dents, family members, and administrators. One resident moved to Laurel
Ridge because her previous assisted living home had an “African”-only
staff, only to find immigrants here. Another resident, Ms. Clinton, worked
with a care aide to lessen the aide’s fear of electricity, after finding out that
she was too scared to plug in and recharge Ms. Clinton’s motorized chair.
About this, Ms. Clinton laughed, “Who’s assisting who in assisted liv-
ing!” Barbara, Mrs. Perkins’s niece, told us: “Well, some of [the staff
members] is hard to understand. They have that thick accent, you know—
most of them are from another country. And I think sometimes, you
know—there are certain cultures don’t give a lot of empathy to older pa-
tients . . . they figure—you’re old—you’re just old. . . . Some cultures
think that when you get old—you know, this is it. You don’t need all that
care. . . . They don’t have the warm bedside manner. . . . But I find . . . if
you complain too much on them, they sort of like stand off from you.”
Dolores, the executive director at Laurel Ridge, has worked in long-
term care for more than 30 years, with experience in both nursing homes
and assisted living facilities. Trained in nursing, she prefers the business
and administrative side of running a home, and has worked in the for-
profit and nonprofit sectors, including as executive director for the cor-
poration that owns the Chesapeake (the assisted living residence discussed
in chapter 6). Laurel Ridge “is the first all-black home I’ve ever had.” As
an African American herself, she admits to having a difficult time with the
cultural differences of her staff, especially regarding eye contact, language,

M R . S I D N E Y AT L AU R E L R I D G E 127
and perceptions of trust. Staff members look down or away when ad-
dressed, and they often speak in harsh tones. “They don’t mean any harm;
they’re good people,” she says, but family members and residents get
upset and think the staff untrustworthy. Laundry is also problematic; staff
members don’t know what is and is not washable, what should be sent to
the dry cleaner, and what should be hand laundered. “You end up doing
a lot of . . . in-services and training, and then they’ll catch on with what
we’re doing”—or, as we found out, are instructed by residents on what
to do.

Finding Companionship and Settling In

Soon after he moved in—“day 10,” Della calculated—Mr. Sidney “hit it
off” with Mrs. Perkins. Although the two were considered a couple by
the staff, he maintained, “We’re just friends.” Together they attended ac-
tivities (although one would go without the other), ate at the same dining
table, and monitored each other’s health. “She looks out for me and I look
out for her.” Della called their relationship a “blessing,” and Barbara, too,
was pleased, though she thought Mr. Sidney was a womanizer, at least in
his younger days, and worried about his being a university graduate and
athlete. “I think Mr. Sidney picked my aunt . . . because she carries her-
self . . . and she does have a pretty good mind. . . . I don’t know how they
clicked; they just started clicking.”
Both Mrs. Perkins and Mr. Sidney relied on each other and valued
their companionship. The staff knew how much he missed her when she
was hospitalized, and when the nurse told him on the day of her return
to Laurel Ridge that she was back, he quickly left the library to “give her
a ring.” In one interview, Mrs. Perkins commented, “I get lonesome.” She
went on to describe how Mr. Sidney came over to sleep, he in his wheel-
chair and she in her recliner, keeping each other company. Sometimes she
inquired if we had seen her friend that day, as she worried when he missed
exercise class or a meal.
Mr. Sidney also talked highly of another dining table companion,
Mrs. Waters, who shared his interest in nutritious food. They both took
the Laurel Ridge dining staff to task for not keeping water glasses filled
or serving salads. Mrs. Waters was quite vocal, reminding the home of its
responsibilities to older folk, and shared Mr. Sidney’s strong support of

128 INSIDE ASSISTED LIVING

exercise. She walked outside around the perimeter of Laurel Ridge several
times daily unless the sidewalks were slippery after winter ice storms.
Although Mr. Sidney was not gregarious, he did participate in resident
council meetings, occasionally played checkers with three of the men, and
joined Mrs. Perkins for bingo.
Mr. Sidney seemed ambivalent about his move into an assisted liv-
ing residence, and specifically to Laurel Ridge. On the one hand, he was
aware of his increasing decline and his need for assistance. On the other
hand, his preference, like most residents, was to be younger and back in
his own home. There were days when he was comfortable, and others
when he was “not happy.” One afternoon in June eight months after mov-
ing in, Laurel Ridge was “beginning to feel like a jail” and he was “ter-
ribly bored”; he commented that he needed to “get my life together” and
“back on track.” A month later he was sorry he had sold his home, felt
that he was “quickly talked into this”—referring to selling his house to
Della’s niece and leaving his old neighborhood. By August, he was more
content. He told the interviewer that he now thought of moving only
when he got “mad.” “I don’t think I want to go anywhere else. I’m satis-
fied here.”
Rebecca, the move-in coordinator at Laurel Ridge, says that the hard-
est thing about transitioning for residents is “losing their home. . . . going
from a two-story house to a room.” Dolores notes that the settling-in
period can last from two months to a year before a person is comfortable
in assisted living and feels “this is the place I want to be.” However, she
is not under any illusions. “There’s no place like home. No matter what
you do, there’s no place like home.” There is a conceptual difference be-
tween what constitutes the image of “home” and the assisted living room
or suite. One afternoon a resident with dementia walked up to the front
desk and inquired as to the location of her room. Pleasantly, the reception-
ist directed her “home.” The woman replied that she would love to go
home, but since her house had been sold, she would have to be satisfied
with her current room.

Doing ethnography at Laurel Ridge was complicated by three factors. First, this
two-story building was constructed almost 20 years ago for an independent and
mobile population of residents. The corridors are long and form a square around
an outside courtyard, and at several points other corridors fan out from this pat-

M R . S I D N E Y AT L AU R E L R I D G E 129
tern. One small, slow elevator services all of the residents and staff. This design
works to keep residents in their rooms. For a frail population, it is a long trip to
the front of the building, and there is minimal staff to chauffeur residents to and
fro. Consequently, it was difficult to casually meet and converse with residents,
which is necessary to establish rapport. Our strategy instead was to knock on res-
idents’ doors, resulting often in interrupting naps or television soap operas.
Second, a lounge on the second floor and the library on the first were com-
mandeered by the medical staff to house the medication carts and dispense
medicines. The only other public spaces open to residents are the activities room
(where, when events are not scheduled, the television is blaring), the downstairs
television lounge, and an outside patio used during nice weather. Few residents
sought “permission” to exit the front door to sit outside or walk along the parking
lot. This, too, made it difficult for us to meet residents outside of planned
activities.
Third, the dining room has its own staff. At the Chesapeake, we assisted the
direct care aides serving meals and helping residents, and were able to use this
interaction to consolidate relationships [see Chapter 6]. At Laurel Ridge, direct
care staff were assigned different corridors and residents every six weeks; they
spent more time in residents’ rooms and less time in the halls because staff cen-
sus was low and they had more work; and when they could take a break, the
aides congregated in or “escaped” to a small staff lounge next to the director of
nurses’ office. Housekeepers took lunch privately in vacant rooms or in the laun-
dry area. Joseph, the director of nursing, said one afternoon that lunch is often “in
a cup,” meaning that no one has time to sit and eat, only a moment to grab a
drink and take it with her. As a result, our interaction with staff members was
limited.
We did, however, take part in activities, painting nails and assisting with
crafts and bingo; we attended resident council meetings; and we spent time
chatting, outside and in. We visited with residents regularly, learning early on
who did and who did not watch the “soaps,” and about other daily routines. We
also learned early on how important the meal hours were to residents, and we
had to juggle our research time accordingly, remembering not the hour set for
the meal but the informal time of line-up that happened well in advance of the
posted mealtime. We bought items for one woman who found it difficult to leave
Laurel Ridge, things like a thimble and stamps. (Trips to the bank and the post
office seem to be problematic for assisted living homes, making it difficult for res-
idents to obtain cash and postal supplies.) We helped this same resident get a

130 INSIDE ASSISTED LIVING

 feel of using a laptop, and brought tools and hung up Mrs. Perkins’s photographs.
One of our university interns photographed an artist’s entire collection of two
hundred paintings to categorize for submission to a museum database.
Fieldwork has its playful side. Until he became ill, I regularly met with one
man to play checkers. Now 85, he had been playing since he was eight years old,
and he and fellow employees played at lunch time during the greater part of
their working years. I hadn’t played since the age of nine, and he took me from
being a neophyte to a winner. Despite his losing to me, I don’t know who was
more pleased at my winning, him or me. Ironically, on that day, Mrs. Perkins had
asked me how I fared. When I told her of my success, she loudly exclaimed, “Go
girl!”
Mr. Sidney was almost always ready to talk with us, except in those rare
instances when he felt bad. We discussed his health, our families, and his life. We
reminisced about his wife, his military exploits, and his work. He often left us with
some new insight on the positive side of aging and said how “very lucky” life’s
treated him.

Getting to Know Laurel Ridge

Although not a “Wisconsin Avenue joint,” Laurel Ridge serves a popu-

lation for which, according to its executive director, the region does not
provide: a contingent of middle-class African American residents who
have lived in Washington, DC, for most of their working lives.

Geographical Place
Laurel Ridge, part of a small for-profit chain, is situated on a busy four-
lane street, divided by a median, on a popular bus route. To the north is
a train station and shopping center housing both a Starbucks and a Latin
food market. Further north, the street runs adjacent to a major fashion
mall and eventually works its way into the outskirts of a university cam-
pus. Traveling south, bus riders can step out into a small commercial
sector that houses African food marts and ethnic restaurants, or continue
on to the adjoining city. Large, private tree-filled lots surround the rest of
Laurel Ridge.
The building consists of two stories constructed into a hillside. This

M R . S I D N E Y AT L AU R E L R I D G E 131
makes the inner back core of the first floor unusable for resident living;
offices, laundry rooms, and a private dining room are located in this win-
dowless space. The parking lot faces the long front of the building; only
a narrow side of the home abuts traffic. Residents sitting out front see
neighboring greenery and sky just beyond the short stretch of the parking
lot. Because trees and a grassy slope make it difficult for potential con-
sumers to see Laurel Ridge from the main road, the large sign put up by
the owners advertising available rentals is the main indicator that an as-
sisted living residence sits on the hill.
Cost, location, and a nurse on duty 24/7 are three factors that may
be considered by prospective residents and their families in looking for an
assisted living residence. Most of Laurel Ridge’s formerly urban residents
needed to move out of the city to be near their children’s or nieces’ sub-
urban homes. The staff at Laurel Ridge markets to community groups and
churches, and they have developed a strong network with a nearby hos-
pital, an adult day care center, social workers, ministry outreach, and
other assisted living and group homes. Laurel Ridge can accommodate
112 residents; the average number of residents is near 85, but the manage-
ment would prefer 95.

Social Space
Della found that her uncle’s move into assisted living was “good and
necessary.” Acknowledging Mr. Sidney’s recent decline, she appreciated
that Laurel Ridge was “hospitable” and “very caring,” and, importantly,
could provide the care he would need before a possible transition into a
nursing home. Della’s greatest concern was whether she would have to
move him, “which I don’t want to do.” Like Dr. Smith at the Chesapeake,
she referred to nursing homes as “warehouses.”
Laurel Ridge is licensed for level 3 care. Residents pay an additional
fee for greater assistance. While the home does not accept Medicaid, it
does have two internal subsidy programs to help residents age in place.
One program gives financially strapped clients reduced rent when moving
in, the philosophy being that some income generated for vacant rooms is
better than none. There is also a “spend-down” program where residents
who have lived at least two years at Laurel Ridge and find themselves out

132 INSIDE ASSISTED LIVING

of funds may be charged less. This helps to keep the building’s occupancy
rate up.
One of Joseph’s jobs as director of nursing is to complete assess-
ments on new and continuing residents. Over the years he has found
Laurel Ridge taking in and keeping “sicker” residents. “You see people
with multiple stroke . . . uncontrollable diabetes . . . respiratory condi-
tions,” things “you’re not equipped to deal with.” These residents, he
feels, should be in a nursing home, but they prefer assisted living because
it is “as close to home as you can get.” Despite this trend in health needs,
the number of staff members has not increased to meet demand.
Another characteristic of the social environment of Laurel Ridge is
that instead of segregating residents with severe dementia into a special
unit, as we saw at Huntington Inn, Middlebury Manor, and the Chesa-
peake, Laurel Ridge’s policy is to lock all of its exits, essentially creating
one large, all-inclusive dementia care unit. Family members, visitors,
tradespeople, and residents are buzzed in and out, all at the discretion of
the receptionist. Residents complained at council meetings and with each
other about residents’ wandering into their rooms day and night, often
staying for long periods of time, taking money and items of clothing,
banging on doors, and removing residents’ name signs. One administrator
described the Laurel Ridge approach as a “rights” issue that supports the
freedom of people with dementia to act as they see fit; some staff members
felt that working with so diverse a population was stressful and hoped for
increased staffing.

Inside the Home

The front door to Laurel Ridge is not disabled-accessible, so after being
“buzzed” in, we sometimes were called on to help a resident in a wheel-
chair or with a walker to exit through the doorway. We also learned which
residents needed to be kept from leaving the building. Occasionally it was
problematic negotiating both at the same time.
The lobby is large. The receptionist’s desk is positioned to allow the
receptionist to see the glass front door. Bird cages donated by a postal
worker fill one section near the windows. The lobby area originally held
chairs, but the staff found that these too often attracted residents with

M R . S I D N E Y AT L AU R E L R I D G E 133
behavioral problems, so they removed the seating. To the right of the
lobby as one enters the building is an administrative office, and to the left
is the dining room. Straight ahead is a T intersection leading in one direc-
tion to a hair salon, copier room, two more administrative offices, and
residents’ suites, and to the left, a staircase, the “library” (a room with
wallpaper depicting book shelves and used for medicine distribution), and
more living areas. The building surrounds an outside patio; corridors go
off in several directions. On the second level, the activities room is the
focal point of resident contact. The nursing station and nursing director’s
office, the staff and “medication” lounges, and a specialized dining room
used to feed and care for frail residents complete the public areas. An ad-
ditional patio, surrounded on three sides by a high fence, is located out-
side the rear of the building. It is open to residents only for special events,
like the Fourth of July barbecue.
Most residents live in small rooms with private baths. Larger rooms
are marketed for two people, defined as either a couple or roommates. In
one shared room, Mrs. Jones and her roommate lined up their single beds
in front of two individual televisions. Mrs. Jones had no problem sharing
the bathroom, she told me, unless it was occupied for too long a time.
Mrs. Perkins, on the other hand, “went through” 10 roommates, until the
executive director finally gave her a single; the spend-down program
helped her family pick up part of the extra cost. Mrs. Perkins had the
reputation of being a somewhat difficult resident, called “feisty” by her
niece. In her defense, we learned that she had had no previous contact
with anyone with severe dementia; she was also placed with women who
had behavioral problems, some severe. One roommate frequently took
her things; another hit her.

Mrs. Perkins said her roommate swung her arm at her, knocking her glasses off.
She didn’t think she was hurt because Mrs. McDonald is so weak and small, but
she is still having her eyes checked. . . . Even though Mrs. McDonald didn’t do a lot
of damage, it has been upsetting and frightening for Mrs. Perkins. She was afraid
to go to sleep at night. Joseph, the director of nursing, refused to accept the
story. . . . “She didn’t hit you,” he told her. This really angered Mrs. Perkins. She
insists that she was hit. The staff removed Mrs. McDonald from Mrs. Perkins’ room
on Monday. Both Mr. Sidney and Mrs. Perkins were relieved when she was finally
able to have her own suite.

134 INSIDE ASSISTED LIVING

 Residents repeatedly described how much they liked the appearance
of Laurel Ridge. Dolores, the executive director, believed that the building
needs a face lift, but the corporate ownership refused to issue funds for
this purpose. The director of maintenance performed small renovations
when time permitted—he repainted the guest bathroom during our re-
search—but more often he was kept busy fixing leaking air conditioning
units, assembling lawn furniture, replacing light bulbs, and doing every-
thing that a building supervisor accomplishes in an apartment house.
When we started the research, the dining room was covered with a dark-
colored, stained carpet, and the chairs had wheels. Dolores told us that
the carpet needed to be “thrown out, pulled up, burned.” Soon after our
research was completed, she finally convinced the corporate office to make
some changes. A light-colored wood floor was installed, and gliders re-
placed chair wheels. Linen tablecloths and napkins, vases of flowers, and
stemmed glass water goblets remained.
Dolores also thought the corporate office should allot more money
toward activities. When we first arrived, there was a full-time, college-
trained director of activities working toward professional certification.
When the resident census abruptly fell, this position was cut, and several
part-time employees periodically took over. Dolores felt that assisted liv-
ing homes need “pied pipers” to get residents moving and involved. De-
spite the limited budget, residents enjoyed bingo and Pokeeno, nail polish-
ing, game playing, group television watching, exercise class, and occasional
field trips to local stores, the pharmacy, and restaurants. Special events
included a yearly trip to a raceway, a Christmas party, monthly birthday
celebrations, and a fashion show in May with residents as “stars” model-
ing clothes from a local shop. Some religious groups hosted dinners for
residents at their church halls, and several churches provided services at
Laurel Ridge on Saturdays and Sundays with good music and an excellent
turnout.

The Average Resident

“Nobody is average,” Joseph said in an interview, although when pres-
sured he outlined characteristics of an “ideal type” resident of Laurel
Ridge. “I can give you this. Someone who has been at home for a long
time and they have been taken care of by the family. . . . The family sees

M R . S I D N E Y AT L AU R E L R I D G E 135
that they cannot meet his needs. . . . He’s refusing care. . . . [They bring]
him to assisted living. And sometimes the family may be overwhelmed.
. . . And they find out it’s too much.” At Laurel Ridge, residents range in
age from people in their early 50s with mental health problems to women
over the age of 100 whose major health issue is physical frailty. Many
residents have involved families, but others do not. There are also resi-
dents who have no family locally or have fictive kin who might be stretched
too thin with other demands to provide ongoing assistance. The facility
is also home to respite placements and to people who take longer than
average in rehabilitation, because developing strength and engaging in
physical therapy is less expensive in assisted living than in a skilled nurs-
ing setting.

A Cut Below
Competition between assisted living homes is keen. Dolores noted:
“What’s going for us is that we have the cheapest rates around. I find that
consumers are smarter than what they used to be—way smarter.” She
attributed this to a computer-savvy generation. “There is so much infor-
mation out there—and you can pull up anything you want. . . . The con-
sumers are very intelligent.”
When consumers “pull up” Laurel Ridge on the Internet and then
visit in person, they find an assisted living home that has a nurse on duty
24 hours a day, administrators who are willing to work with the financial
resources of residents and family members, many services provided in
the base monthly price, a convenient location, a partnership with a local
hospital and geriatric medical practice, and a staff that is stable, even if
few in number and overworked.

Life at Laurel Ridge

In various conversations, Mr. Sidney called his co-inhabitants at Laurel

Ridge “residents,” “inmates,” “tenants,” and “patients.” This categoriza-
tion by someone living on the inside fits well with the types of residents
we observed and interviewed, and reflects on their lifestyles. Many resi-
dents were frail, with multiple health problems, and a good part of their

136 INSIDE ASSISTED LIVING

day was spent lining up or sitting and waiting for a nurse to dispense pills.
In fact, during the early part of our study there, residents complained that
the lines to receive medicine were so long and so slow, and chairs so few,
that they often trekked back to their suites to wait for a less-congested
time, sometimes making this trip to the medication cart three and four
times. Many other residents (and family members) used the word “patient”
to describe those living at Laurel Ridge, because they felt that if they were
not sick, they would not be living here.
As for “inmates,” Mr. Sidney himself told us that Laurel Ridge was
“beginning to feel like a jail,” though when he used the term “inmates,”
he followed it with a grin. Residents who were prohibited from leaving,
either because they wandered or because the staff feared that they would
board the public bus at a nearby stop, undoubtedly did feel constrained.
Mr. Caruthers (whom we recognized as having once lived at Huntington
Inn) had been known to call a taxi and travel to parts unknown. In fact,
he spent a good portion of one Sunday afternoon yelling in the lobby
that he wanted to be let out of Laurel Ridge and on his own for the day;
finally, the promise of a monetary “bribe” calmed him down. Prison, in
this case, is a good analogy for institutional living, with the staff serving
as wardens.
The terms “resident” and “tenant” imply independence. “Resident”
connotes living at a place without a sense of ownership. Here at Laurel
Ridge, some individuals happily went about their day, feeling safe, secure,
and contented. “Tenant” speaks to a familiar category of real estate; all
residents either rented or held real estate before moving into assisted liv-
ing. The term implies a monetary exchange with some control and did fit
some individuals living at Laurel Ridge. Ms. Clinton paid her own bills
and “rented” two rooms, one in which to store her substantial collection
of art. Ms. Hart completely remodeled her suite, painting and recarpeting,
and installing cabinets, a swag lamp, a refrigerator, and an oven. (In ex-
change for this privilege, Ms. Hart agreed to show her rooms as a model
for potential move-ins. This was the only case of such extensive refurbish-
ment that we saw in all six research sites.) Mr. Brown made the choice to
sell or give away his household furniture and use what Laurel Ridge of-
fered; he was satisfied, the sale gave him pocket money, and it eased the
strain of moving on his 80-year-old cousins who helped him relocate.

M R . S I D N E Y AT L AU R E L R I D G E 137
 Fictive Kin
Residents vary in their backgrounds, interests, health status, and family
patterns. Common in Laurel Ridge is a type of family relationship known
as fictive kinship, one in which relatives are defined socially, not through
blood or marital ties, but instead on the basis of their actions (Schneider
1984). Mr. Sidney was not atypical in having outlived his biological rela-
tives and his friends. “Here I am and I don’t have not one single friend.
All of my friends—I’ve outlived all of my friends, and I have. I don’t have
a friend that’s somewhere living. You see? All of my old friends are gone.
You get a funny feeling—you get a feeling, everyone—everybody—all
gone. All my family—my personal family. I mean every one. . . . They’re
all gone.” Twice married and childless, he felt “very lucky” to have been
“adopted” by his second wife’s family and noted that they treated him
well, “just like I was one of them.” Della, Mr. Sidney’s great-niece, was
matter-of-fact about her status as his adoptive family; she had overseen
other relatives beside Mr. Sidney and expected her caregiving role to
continue, pointing out that the typical African American family is much
more extended than white families: “It’s something you do. . . . You do
what you need to do. It’s not the first time . . . and it hasn’t been the last
time.”
Joan, a fictive niece of Ms. Harriette Emory, another resident at Lau-
rel Ridge, referred to caregiving as a “responsibility” and an “honor.” “In
black families, we always look after somebody.” In a telephone interview,
Joan had exclaimed, “Aunt Harriette was willed to me!” Mrs. Emory had
been the best friend of Joan’s aunt for 63 years when the aunt developed
cancer. Before she died, she entreated Joan to take care of “Aunt” Har-
riette, whom Joan had known her entire life. Mrs. Emory’s husband had
long since died, and she had lost her son to a drug overdose in his thirties.
Joan handled her aunt’s familial, medical, and financial needs for close to
10 years, visiting at least weekly and monitoring hospice care until Aunt
Harriette’s death at 91. “I think it’s terrible to be alone,” she told us in an
interview, adding, “I would want somebody to do that for me.” She attri-
butes learning her attitudes to caring and respect from her own grand-
mother, with whom she had been close.

138 INSIDE ASSISTED LIVING

 Outliving the Money
Overseeing finances is the responsibility of family, including fictive kin.
Mr. Sidney faced no monetary challenge, at least for the moment. Mrs.
Perkins was not so lucky. She had left the employ of the federal govern-
ment to open a small business. After she suffered a fall in her eighties, her
husband tried to modify their home for her return, but because she was
unable to use the stair chair, staying at home was not feasible. Mrs. Per-
kins liked the rehabilitation facility, but it was too costly. Barbara, her
niece, found out about Laurel Ridge from one of its social workers. Money
was tight. As Barbara told us, “We scraped and scraped and scraped and
scraped.” While Mrs. Perkins was adjusting to life in assisted living and,
in fact, learning to walk again, her husband was becoming more frail, and
Barbara was spending an inordinate amount of time running between the
two homes. After a stint in a nursing facility, Mr. Perkins joined his wife.
Barbara said, “Oh, boy!” “I know they didn’t have that much savings,”
she continued. “And I said to put them up at Laurel Ridge together is
going to be about $4,000 a month and—he had a little bit of money in
the bank—but it wasn’t that much. I said, can I get this house sold before
that money runs out?”
What Barbara, Mrs. Perkins, and other residents and families soon
learn is that Medicare does not pay for assisted living. Mr. Perkins’ early
disability and Mrs. Perkins’ small business left the Perkinses with minimal
Social Security benefits; this, coupled with paying for assisted living and
medicines, required Barbara to take out a loan before the house was sold.
She was afraid that she would have to put her aunt in a nursing home,
thinking, “Oh, God, she would have a fit! . . . She’s still kind of perky.”
In desperation, Barbara spoke to the directors at Laurel Ridge. “They said
that they really don’t put you in the street. I didn’t know that.” They told
her about the spend-down program and encouraged her to apply. “I don’t
think they like a lot of the residents to know this.” In the meantime, Bar-
bara was asked to make funeral arrangements for her aunt. (In Maryland,
assisted living residents must, at admission, state their preferred funeral
home, a task approached humorously by Ms. Clinton. She envisioned a
posh site in the heart of Washington, DC, hoping this would entice her
artist friends to pay her a visit!) Fortunately, Mrs. Perkins’ bill was re-
duced. “She was under the impression that the money would outlive her,

M R . S I D N E Y AT L AU R E L R I D G E 139
you know,” Barbara said, “but because longevity runs in the family, and
she has such a strong will, she’s outliving the money.”
There are costs in addition to rent, medications, hospital and reha-
bilitation bills, and pocket money, which by themselves run high. Ms.
Clinton spent more than $100,000 in medical expenses despite insurance
before her move to Laurel Ridge. Barbara spoke of the community fee.
“You have to pay a one-time resident fee in those homes, you know.
. . . $2,500 . . . and so I just figured she [Mrs. Perkins] can’t go anyplace
else because she’d have to start all over again, and she doesn’t have money
to start all over again. Plus she doesn’t have money to pay that initial—
because, I think, any home—you have to be there a while—to spend your
life savings before they try to help you out, you know.” Dolores noted
that the majority of families at Laurel Ridge supplement the cost of resi-
dents’ care. As for moving, the payment of a community fee and eligibility
for a home’s spend-down program, as we see with Mrs. Perkins, work
against residents who are not satisfied where they are and would like to
transfer to another assisted living residence. So, too, does moving a resi-
dent’s belongings, especially for older family members caring for siblings,
cousins, and friends.

The Dining Room

The most sought-after and the most contentious place in Laurel Ridge was
the dining room. It has a serving staff different from the care aides, whose
only food-related work is to deliver and pick up people at mealtimes and
help residents identified as having “special needs.” The dining room was
open for about 1½ hours for breakfast, and then the staff closed the
doors. Afterward, the dining room theoretically was open from 11:30
a.m. until 6:30 p.m., the original design plan being that residents could
eat meals at any time during the day. Despite the sign announcing these
hours, the dining room closed about 1:30, allowing a few stragglers to
remain, and then refused entry to residents until it opened for dinner,
about 4:00 p.m. Residents complained about this, to no avail. They would
line up for dinner sometimes as early as 3:00 p.m., and occasionally the
doors opened at 3:30. Several of the residents could not remember when
they had last eaten a meal, and they repeatedly asked the receptionist
when lunch or dinner would be served. Those who entered even as “late”

140 INSIDE ASSISTED LIVING

as 5:45 were hurried by the staff, who wanted to clear the dining room
by 6:30 on the dot. If someone knew that she would be late because of a
medical appointment, she could call ahead to reserve a meal.
The dining room’s main entrance is off the lobby, where a sign listing
the day’s entrées is posted. The music that blared throughout the building,
an oldies rock radio station, could be heard above the din of chatter and
clanking dishes. A second door to the dining room is on a perpendicular
wall which faces a hallway and the medication-cart “library.” Residents
would come early for supper, receive their medications, and then hang
around the “library,” the corridor, the TV lounge, and the reception area
until the dining room opened. Those who could manage the short walk
would leave their wheelchairs and walkers in the hallway, to be picked up
after meals.
For most of our research tenure, four entrées a day were offered.
Residents could select one entrée for lunch, then another, or the same one,
for supper. The kitchen would also make sandwiches upon request, and
one resident consistently had cooked cereal for many of her meals. Soup
was often available, but to residents’ consternation, it could arrive at any
point during the meal and was rarely hot. Mr. Sidney was told by servers
that he would get his soup “when he got it.” There were complaints about
the kitchen running out of foods of choice and about the lack of fresh
vegetables and salads. Others appreciated the cook’s specialties, like rice
and beans and chicken wings. Because of budget cuts, only two entrées
per day were offered at the end of our research at Laurel Ridge. Despite
the early supper hour, evening snacks were generally not available, and
many people kept food in their rooms.
At Laurel Ridge, residents could eat whatever they liked despite health
problems that would dictate diet restrictions. Rebecca, the move-in coor-
dinator, talked about autonomy in her interview:

We can’t force the residents to do anything—that’s probably one of

the major differences between assisted living and a nursing home.
. . . We can encourage them and remind them and tell them—like, we
had a resident who constantly would go out to the grocery and buy
food and sweets and things like that, and lie to us. And tell us that it
wasn’t happening, but then when we would go and do something for
them in the room, then we would find all this terrible food. And so

M R . S I D N E Y AT L AU R E L R I D G E 141
 we would remove it and we would try and encourage them and tell
them why this is wrong, but unfortunately we can’t force the resident.
Just like if they come downstairs—[if] they’re a diabetic. . . . They go
to order dessert and they want the banana cream pie, and we can say
to them, “Well, it’s probably not in your best interest to have that
because you are a diabetic, and you know that’s going to cause your
sugar to go up,” and they say, “I don’t care. I want this banana cream
pie”—we can’t force them not to.

Within the dining room itself, residents sometimes had difficulty ne-
gotiating space to find a seat. Although there was no assigned seating,
many residents had “their” tables and dining partners, and were reluctant
to share. Four women held court in the center table, talking about every-
body who lived at Laurel Ridge. Their loud speech, probably a result of
deafness, made their conversations audible to almost everyone. (Mrs.
Jones, not one of the four, was annoyed at what she heard.) Ms. Hart,
though criticized by some, often sat by herself because she wanted to read.
To Ms. Clinton, company was irrelevant; she ate wherever she could eas-
ily maneuver her motorized chair, finding more space at the close of the
meal hours. Mr. Sidney, of course, ate with Mrs. Perkins.
Despite the importance of meals in residents’ lives and the daily lineup
to be served, we found the dining room to also be a source of conflict.
Other residents took seats being saved for friends; several residents were
routinely argumentative; one person periodically sang loudly during meals;
a few were physically aggressive toward others in the dining room. One
afternoon we found Mr. Sidney upset about what happened at lunch.

He said he was sitting at his table and was just getting comfortable when “new
people came in” and were extremely . . . “vulgar” and “profane.” They were taking
“God’s name in vain,” “screaming” at residents “something about the seating
arrangements,” and he found this disturbing. He said, “You lose your appetite.”
That day he cut our visit short. He was going to dinner early, “before a fight.”

Many residents had not been exposed to the negative characteristics

of dementia before moving into Laurel Ridge. Docile and quiet residents
were readily accepted, and we noticed residents helping each other, from
pushing a wheelchair in to a table to escorting a neighbor to his room.

142 INSIDE ASSISTED LIVING

 The Philosophical Mr. Sidney
Mr. Sidney had a calm approach to life. He had a sense of both compla-
cency and ambivalence, satisfied enough with his everyday existence to be
accepting yet hesitant to initiate change. He felt that consistency is impor-
tant in adjusting to assisted living and that learning is crucial: “You learn
by doing, you know. . . . Of course, I had to ask some questions. I still
have to ask questions.” The “tenants,” he thought, needed to make sug-
gestions to “management.” Mr. Sidney had advice for newcomers at Lau-
rel Ridge: “People who come here have to learn to get in a set routine,”
and, he added, “we need to watch out for each other,” just as he and Mrs.
Perkins do. As he said one July afternoon, “When you’ve gone through
nine decades, you have seen a lot, [you have] a clear view of what is going
on.”
During an interview a month later, Mr. Sidney spoke of what he saw
when he looked back over his life. He talked about appreciating his mem-
ories. “You just enjoy it, you know. . . . You have so much experience.
. . . It’s really good. . . . Everyone should be able to . . . look back over
things.” Then he asked us to imagine how we would feel at his age. When
asked “What sticks out in your mind?” he responded, “I think a lot about
the people I have seen out there.” Della observed that Mr. Sidney “has a
beautiful way of looking at life. . . . He has a spirituality that’s very real
and meaningful to him. In fact, he has said on a few occasions to me that
when he goes to bed at night he just asks God to—how does he put it—he
asks that when he wakes up, wherever it is, it’s with Him. To me, that’s
quite a faith. I wish I had it.”
Mr. Sidney was no “Pollyanna.” Della corroborated what we found
in our discussions with him, that he noted and took action to moderate
his decline. He watched himself deteriorate and told her, “What I could
do last week, I can’t do this week.” Despite the daily challenges of being
an old man, Mr. Sidney remained philosophical about the process of
aging. “Getting old—getting old is the thing to do. Everyone should get
old—that’s the truth, . . . everybody should get old—if they didn’t have
to die—but everybody should . . . because it is good, because you look
back over things.”

M R . S I D N E Y AT L AU R E L R I D G E 143
 Final Thoughts

Inclusion

Dolores would like to see a dementia care unit established as part of what
Laurel Ridge could offer to potential clients, but the corporate office is
not willing to invest in so extensive a remodeling. Residents complain of
encountering inappropriate behavior, such as hitting, shouting, wander-
ing, and stealing; and their tolerance levels vary, depending on the group
living at Laurel Ridge at any one time. Dolores finds that families are
more tolerant of people with dementia; residents, on the other hand, see
those with dementia on a daily basis and become afraid that they, too, will
lose their cognitive ability in the future. Some residents do feel that indi-
viduals with dementia are coddled at the expense of others, but it may be
that the staff are too few and untrained to handle numerous and difficult
problems.
From the nursing perspective, Joseph feels that “people with demen-
tia really need a separate unit because it requires a unique type of care and
you have to train your staff on how to manage people who have dementia.
If you throw them all into the same group, it’s particularly difficult because
of the number of times you spend with the person who has dementia,” in
comparison with someone who is cognitively alert. “Wandering is some-
thing you cannot stop, but through activities you can manage that. So
people have to be trained. You have to find a way for everybody.” In his
position as director of nursing, Joseph finds that cutting back on care
aides’ hours and the degree of residents’ dementia are stressful on the
staff, especially in regard to the care strategy of repetition. It is “the repeti-
tion of things, the refusal, the resistance to care, that’s—I think that’s
where all the stress comes from.” He also does not discount the strains of
everyday “normal” assistance: “When you have fifty people to give med-
icine—it drains you. It drains you.”
Dolores concurs: “We have a lot of behavior problems here and that
takes a lot of the staff time to re-approach, re-approach, re-approach
to get this person done.” The charges, Dolores feels, do not reflect the
amount of time direct care staff spend with residents. She sometimes tells
families: “It takes us ten times—ten different people to get your Mom a
bath in two days, because we’re not the place where we just grab and push

144 INSIDE ASSISTED LIVING

them and make them do it. We don’t do that. But we also have to make
sure that this person has a bath, and changes clothes or whatever. But
sometimes we just run up against the wall.” Both Joseph and Dolores feel
that an enclosed dementia unit and specially trained staff would better
serve all the residents at Laurel Ridge.
Rebecca, move-in coordinator and main facilitator with families and
residents, takes a slightly different realistic and experiential view on the
subject of a dementia care unit. “First off, I think it’s a little expensive for
us to look into. The other thing is that it’s hard to figure out who should
be in it and who shouldn’t, because so many residents do stuff referred to
as dementia. And we are a locked facility all over the place. So, you know,
a lot of times residents who have dementia do like to walk around and
roam and so . . . if the dementia facility was a wing and we locked it up,
they would probably go crazy because there wouldn’t be any place for
them to go, for them to walk to. So, walking around here—every place is
going to be safe for them to go. They can’t go out.”
The building is not designed for easy remodeling, and the corporate
ownership is not in favor of any change, especially with Laurel Ridge’s
low census. However, familiarity and experience with other homes having
dementia care units enable Dolores and Joseph to realize their benefit in
caring for all residents. For the time being, it is easier and cheaper for the
staff to tell residents to lock their apartment doors to keep out wandering
neighbors. Rebecca, too, brings up a good point—the problem of confin-
ing residents once they have had the freedom to wander about the entire
home.
During our research, no residents or family members complained to
us about being buzzed in or out of the front door. Either it is not an issue,
or it is something they are willing to accept for a good price of care. Sev-
eral did note surprise at the level of dementia seen at Laurel Ridge. Mrs.
Perkins said that she had never seen such people and didn’t realize they
even existed. Her niece Barbara “was surprised to know that they had so
many patients with Alzheimer’s” (often used as a catch-all for any type of
dementia). She hadn’t noticed this on visiting Laurel Ridge. “I didn’t pick
that up when I first took my aunt there. . . . I didn’t realize that they had
patients that didn’t know where they were, until I went back to visit a
couple of times, you know. And a couple of the patients started talking to
me and I realized that they didn’t know where they were. And now I see

M R . S I D N E Y AT L AU R E L R I D G E 145
they’re taking more and more of them up there.” Mr. Sidney also was not
cognizant of how dementia is manifested in residents’ behavior. What he
saw as conflict situations in Laurel Ridge, especially the verbal outbursts
and abusive contacts in the dining room, were really behavioral issues on
the part of the residents with cognitive difficulties. As Laurel Ridge con-
tinues to be census-challenged and to accept residents with increasingly
more pronounced medical conditions, it will be plagued by these sources
of conflict and concern.

Resident Transitioning
Laurel Ridge is similar to other assisted living homes in the area in terms
of resident transitioning. As with the Chesapeake, the ages of residents
span fifty years; lengths of residence vary from a few months to a decade;
hospice, rehab, and respite stays are additional sources of income; some
people transition to nursing homes, medical facilities, or other assisted
living settings, even out of state; and a few go into independent living or
to a family member’s home. Some residents did see themselves as con-
sumers. Ms. Clinton said she was “looking,” but moving would have been
expensive and difficult for her. “Looking” probably gave her a feeling of
independence and a sense of autonomy that she lost after her fall. Within
the remaining population of residents, there was relatively little shifting;
people seemed content to remain in the suite into which they first moved
unless there was a problem with a roommate or a private room opened
up.
Over the years, Joseph has noticed a cyclical pattern. As people get
physically stronger in assisted living, and as their money runs out, some
move back home. They then decline because their health is not monitored
and their care-giving relatives are overburdened with other familial re-
sponsibilities; he (and others) refer to this as being “sandwiched.” Once
elderly family members can no longer be comfortably managed at home,
they return to assisted living. Then the cycle repeats.
Joseph’s pattern of care highlights one example of episodic move-
ment, as does a consumer model. In this culture, we are expected to orient
ourselves to get “the best deal.” Despite being consumers, assisted living
residents are reticent to move. The first deal suffices for the best deal. They
have already made at least one major transition, into assisted living. It is

146 INSIDE ASSISTED LIVING

far from easy to do this multiple times. The community fee has been paid,
and the resident settled in. It is burdensome to ask relatives and friends to
move possessions a second or even a third time. The flexibility of Laurel
Ridge to work with change in a resident’s financial status and its licensing
to provide level 3 care work to help residents age in place. As we saw,
Mrs. Perkins used a subsidy program, and Della was grateful that her
uncle, Mr. Sidney, could make use of these levels before being forced into
skilled nursing.
A “dementia-inclusive” home also serves to lessen transitions. Laurel
Ridge is not constrained by having to limit the number of residents with
dementia, as is the Chesapeake, which has a limited number of rooms in
its dementia care unit. At Laurel Ridge, the entire home is open to this
type of resident, and increased fees are not applied. The residence has also
designated a dining/activity room where residents with specialized needs
are fed, tracked, and comforted during the day; for the night they return
to suites integrated within the home.
The low census at Laurel Ridge brings about a fluctuation in direct
care staff hours; the fewer the residents, the fewer staff contact hours,
with staff schedules reflecting the numbers of residents, not the degree
of their need. Despite this, staff turnover at Laurel Ridge is low. There are,
however, latent benefits for people residing in a home with a low census.
Directors, like Dolores, are often willing to broker deals to keep rooms
filled. Subsidies similar to the spend-down program used by Mrs. Perkins
are offered. The staff is willing to work harder with and retain problem-
atic residents, and the home is more tolerant of negative behavior. Also,
specialized needs are addressed in a myriad of ways. All of these work
toward lessening resident transitioning and increasing stability in the
home.

The Goal of Laurel Ridge

“Good care for a good price” is a phrase that summarizes what Laurel
Ridge is all about. Mr. Sidney reminded us that “this is not a Wisconsin
Avenue joint.” Dolores feels that “the senior life is hard,” and so she tries
to lead her staff in making the final years of “her” residents’ lives comfort-
able. “I know that I’m in this job because I care about what goes on with
my seniors, period. I love them to death. Some of them get on my nerves

M R . S I D N E Y AT L AU R E L R I D G E 147
and I know I get on their nerves, you know what I’m saying—but I’m here
for their well being. If they don’t like something and you can’t please
everybody, you know you do your best.” While she feels that, ultimately,
the resident has the last word, Joseph sees that care is a balancing act
between what residents want and what they need. “I think you go for the
best interest of the resident.” He is also careful not to be “caught making
decisions for the family,” while Dolores leans on the side of resident
choice.
Our ethnographic research at Laurel Ridge showed an unintended re-
sult stemming from caring for residents. Family members and staff spoke
of residents as role models for their own old age. When I first called to
interview Joan about her Aunt Harriette, she was waiting for an agent to
explain long-term care insurance; she didn’t want to worry her children
when she got older. Caring for Mrs. Perkins made Barbara think: “Taking
care of my aunt has been a lesson for me, you know, as far as preparing for
my old age.” Dolores, working most of her life with older people, has
learned from them and visualizes her old age in assisted living. “I have had
some of the best teachers. . . . I’ve enjoyed them, some of them have been
a nightmare, but a majority have taught me how to be a resident.”

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 EIGHT

` Everyday Life in Assisted Living

A colleague who heard about our study asked us, “What’s a typi-
cal day like in assisted living?” The heterogeneity of people and
places necessarily affects the answer. For many people who reside in as-
sisted living facilities, a typical day might not be very different from a day
spent at their previous home. They have meals, watch television, nap,
read, take care of personal care needs, go shopping, work on hobbies, and
visit with family and friends. Some continue to do their own housekeeping,
while others are thrilled to have a housekeeper for the first time in their
lives.
For others, assisted living could not be more different from home. Liv-
ing in an apartment-style setting is new to many, as is having a roommate
(something that a small number of our participants reported), or living in
one small room as opposed to a house. For some, the daily schedule varies
substantially from the one they had followed or would prefer to follow.
As a result, some older adults residing in assisted living find themselves
awakened or put to bed at unaccustomed times, eating meals earlier or
later than they desire, or taking a shower only twice a week when they
are accustomed to a daily bath. Nearly every resident receives basic ser-
vices such as housekeeping, laundry, and meals, but many require help
from a staff member to complete personal needs like bathing, dressing,
using the toilet, moving around the residence, and taking medications. A
few need almost total care. While many residents express gratitude at
receiving support in myriad personal care tasks, some express annoyance
at the loss of independence, resenting that they need help or that they are
not given the choice to do some things on their own.
Some residents find the assisted living environment provides much

149
more activity than their prior situations, in both positive and negative
ways. Individuals who want social interaction often enjoy sharing in con-
versation and having something to do. Whereas the assisted living resi-
dences in our study structured their activities in the daytime, one group
of women at the Chesapeake created an informal social club that met late
in the evening to chat and munch on snacks. But for those who prefer
privacy or solitary pursuits, the constant presence of others and the en-
couragement at some assisted living residences to participate in the sched-
uled activities (prompted by a belief that social engagement is necessary
for well-being) is an annoyance. When an interviewer asked her to describe
a “good day” at the Chesapeake, Mrs. Mitchell said, “Well, actually they
have too many things—that you have to pick and choose. They’d have
you running every single day. . . . I don’t seem to have much time on my
hands [for] writing notes or letters, or buying cards—and your time is
taken up.” This contrasts with Opal’s experience at the much smaller
Franciscan House, which she repeatedly described as “boring.” Despite a
daily timetable structured by meals and planned social activities, residents
also kept to their own schedules, such as watching a favorite television
show: Mrs. Koehler didn’t miss Law and Order, and Dr. Phil was popular
at Huntington Inn.
The preceding chapters provide in-depth stories about six residents
of assisted living facilities. In this chapter we synthesize some of what we
learned about everyday life in assisted living during the course of this
research. In many ways, assisted living is a study in contrasts, due in part
to the realities of group living. In actuality, many assisted living staff
members and managers want to accommodate resident preferences, but
they must also restrict some choices that residents make. Residents experi-
ence varying levels of contentment and resentment associated with life in
assisted living. We observed similarities and differences across these places
that went beyond the size of the facility or the type of care provided. For
example, assisted living operators vary in the degree to which they are
either rigid or accommodating of resident needs and preferences. Some of
the contrasts and apparent contradictions we observed result from the
unique perspectives of the beholder: assisted living represents different
places for different people because it is simultaneously a residence, a work
environment, and a regulated entity. It is a place where residents experi-
ence their own and others’ illnesses and disabilities, make new friends,

150 INSIDE ASSISTED LIVING

play card games, listen to music, and look forward to visits from family
members. They receive help from workers on whom they depend for
intimate personal care and medications as well as for sympathy, hugs, and
jokes. To the direct care workers, the residents are the reason for their
employment; some residents make the work positive and rewarding, while
others, intentionally or not, are a constant source of frustration. In ad-
dition to meeting the needs of residents, the workers must also meet the
demands of managers, nurses, and residents’ families. Managers respond
to residents, families, and staff in addition to regulatory and market
forces; they are, after all, running a licensed business. Although we have
less information from the perspective of people who work in the public
agencies that oversee assisted living, we often heard from management
and staff members about “the state” or “surveyors” who could penalize
them for making errors or who make seemingly unrealistic demands. And
yet, managers took diverse approaches to implementing the state’s rules.
How different people in different assisted living settings respond to
and manage the various elements described above results in the unique
culture we observed at each place. In the following section we present
some of the realities of life in assisted living, including the restrictions and
accommodations and the contentment and resentment of group living.
After that we summarize some of the similarities and differences across
settings.

Realities of Group Living

Assisted living settings are, by design, meant to be noninstitutional (Kane

and Wilson 2001), especially when compared with what might be consid-
ered traditional caregiving institutions such as hospitals and nursing
homes. On many measures of institutionalization, such as physical design,
professional dominance, rigid schedule, and emphasis on the group rather
than the individual, assisted living succeeds in differentiating itself from
traditional caregiving settings, though to varying degrees. Institutional
elements are evident, however, in both the building’s characteristics and
the degree to which each setting is either restrictive or accommodating of
individual needs and preferences.
One way in which these realities can be appreciated is in the serving

E V E R Y D AY L I F E I N A S S I S T E D L I V I N G 151
and eating of food. Physically and socially, the dining room can be seen
as a microcosm of the larger environment; at mealtimes, many issues,
challenges, opportunities, and satisfactions are highlighted. Meals orga-
nize the day for both residents and staff members, in part because of the
sheer amount of time involved in all aspects of dining: preparing food,
serving it, waiting for it, eating it (or not), and talking about it on food
committees and at informal gatherings like “The Forum” at Huntington
Inn. Many social activities are associated with food, including celebra-
tions and holidays that link residents to events taking place in the world
outside the assisted living facility and to their prior lives. Food is also
symbolic because of its connection to history, culture, religion, and family;
and for these reasons, personal control and choice over what to eat, where
and when, is an important topic (Savishinsky 2003).

What’s for Dinner?

The smaller settings we studied were understandably more accommo-

dating of individual likes and dislikes. At Valley Glen Home, Rani often
prepared personalized dishes; one evening Nellie was having fish sticks,
Rosalie had barley soup, Iveris had a crab cake, and Jane had chicken.
Rani did not offer the foods typical of her native India, explaining that
older people were not accustomed to the seasonings. The kitchen was
centrally located in the house, with the sights, smells, and sounds of food
preparation accessible to all. Throughout the day, the kitchen area might
be visited by residents who liked to sit at the table for afternoon tea. And
a care aide often sat there while catching up on her homework in the
afternoon when residents napped. The kitchen opened onto a space that
included a large table where meals were served family style.
At Franciscan House, Maria learned what foods people did and did
not like when they moved in and adjusted her menu, preparing food to
order as much as possible, especially at breakfast. She explained: “I have
one resident who wants hard-boiled eggs every day. When you’re almost
90, you can have anything you want. So whatever they want. It’s not that
hard. I would rather they eat. They’re not asking me to bake a cake in
the morning, so I say that’s O.K.” The kitchen was visually separate from
the dining room; Maria did not encourage residents’ entering the cooking

152 INSIDE ASSISTED LIVING

space, which she kept immaculately clean. The dining room walls were
decorated with Chinese watercolor paintings of pandas and Christian
artwork, including a wood-carved depiction of the Last Supper.
The larger facilities tried to make up for what they couldn’t individu-
alize by offering some level of choice. Breakfast was the best meal of the
day for residents at Huntington Inn because it provided the most options.
Typically it would include cold or hot cereal, two or more types of bread,
eggs (served to order), French toast, and pancakes. The midday meal was
the largest, usually an all-in-one dish like a beef-and-noodle casserole or
turkey tetrazzini. Only one choice was offered at the main meal, but resi-
dents could request cereal or a sandwich. When asked about the food, one
diminutive woman said, “It’s not so good but there’s tons of it!”
In contrast to smaller residences, the dining rooms at the four larger
settings were visually and structurally separate from their commercial
kitchens. Huntington Inn had a spacious dining room, lit by expansive
panels of fluorescent lights. This space doubled as an activities room; resi-
dents gathered there to make crafts, do chair exercises, and attend sea-
sonal parties. The furniture included both large and small uncovered
wooden tables, with two residents seated at each of the smaller of the
tables and four to six residents at others.
The cuisine at Middlebury Manor was of the “meat and potatoes”
variety. The nursing home kitchen prepared all of the food, which often
was served more than an hour later than the posted mealtime, so hot
items would arrive lukewarm. A typical day’s main meal might include
broiled chicken or slices of ham with baked sweet potatoes and cooked
cabbage. Dessert might consist of a canned pear presented on a slice of
iceberg lettuce or red Jell-O chilled in little glass bowls. The dining room,
added when the facility expanded, reflects the existing mansion’s décor.
The high ceilings, windowed walls, and a gas fireplace gave the dining
room a cheery look. The floor was covered in faux wood-grain linoleum.
Residents kept their own assortment of condiments in the center of their
bare Formica-top tables.
At the Chesapeake, the menu sometimes included items that were
gourmet and ambitious, such as fresh rockfish and crab cakes (local spe-
cialties), saltimbocca, and crepes. Still, sometimes the kitchen staff’s menu
choices clashed with the expectations and experiences of the residents.
When the director of dining services prepared gazpacho, the complaints

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about the “cold soup” that had been served were vocal and lengthy; when
he served fajitas, people didn’t know what to do with the tortillas. He then
helped to form a committee of residents for the sole purpose of addressing
food quality and menu variety. The dining room at the Chesapeake, the
most elegant of the homes we studied, featured clean table linens, fresh
flowers, and most notably, a grand piano. Food service was restaurant
style, with a framed daily menu available at each table; individual orders
were taken by the staff, and generous portions served. Despite appear-
ances, throughout the months of our research at the Chesapeake we heard
many stories about overcrowding at meals. The management revealed
plans to remodel the dining room to create more space. (In fact, this did
happen several weeks after we completed fieldwork.)
Laurel Ridge originally offered a choice of four entrées each day, with
the menu posted on an easel just outside the dining room. To save money,
the management later scaled back to two entrée choices. Residents could
select one entrée for lunch, then another (or the same again) for supper.
When the kitchen ran out of residents’ preferred foods, the staff made
sandwiches to order. We heard some complaints about the lack of nutri-
tious foods, such as fresh vegetables and salads, but several residents also
reported their appreciation for the Jamaican cook’s home-made spe-
cialties, especially red beans and rice and barbecued ribs. (The staff, too,
enjoyed his cooking, and one receptionist asked him to cater her sister’s
funeral.)
The Laurel Ridge dining room needed renovations—the dark-colored
carpet had visible stains from spilled food and drinks. The executive direc-
tor told us that she had attempted for years to convince the corporate
office to remodel the dining room; they finally consented during the time
of our study there, and we observed how the changes, including a wood
floor and new table settings, improved the ambiance.
Despite differences in the sizes and configurations of these assisted
living dining rooms, several of them shared common issues. Spaces became
crowded with walkers and wheelchairs, making it difficult for both resi-
dents and staff members to maneuver between the tables. Residents who
could negotiate the walk to their tables without support were encouraged
to park their mobility aids outside the dining room. Each assisted living
facility attempted to create settings that their residents would find homey
and appealing, whether the country-style leanings of Middlebury Manor

154 INSIDE ASSISTED LIVING

and Huntington Inn, the family-style dining at the small homes, or the
fresh flowers and glass goblets at the Chesapeake.
Food quality and quantity were frequent topics at all these facilities.
Some residents complained while others raved, yet it seemed that nearly
everyone had a favorite dish or meal. Perhaps more important than the
food, however, was the way in which it was served. Even though many
residents, mostly women, expressed gratitude that they no longer had to
cook meals each day, some missed their favorite foods and the ability to
prepare it in familiar ways. Food, as well as mealtime memories, intrinsi-
cally links individuals to memories of home.

Limited Accommodations

The physical design of each assisted living residence provides certain clues
about the culture of the place. What it cannot describe are the ways places
are experienced by the people who use them, whether residents, staff, or
occasional visitors. Residents of assisted living are there because they can-
not live alone; either they need assistance to manage the activities of daily
living (bathing, dressing, taking medications), or they need the safety and
oversight afforded by living in this type of residential setting. Individuals,
of course, have their own opinions about whether they require assistance
and about how they would prefer to have it provided. For example, some
residents prefer to shower in the evening, others in the morning; some
want the main meal to be served at noon, others in the evening; and so on
across the spectrum of daily activities. We observed that life in the assisted
living setting presents restrictions and accommodations, a result of staff
efforts to balance the different preferences of individual residents as well
as regulatory requirements, corporate pressures, and professional stan-
dards. These competing demands mean that residents have choices but
within limits.
Requirements concerning meals are among several topics included in
Maryland’s assisted living regulations, which mandate three daily meals
served in a “common dining area” and food prepared in accordance with
“state and local sanitation and safe food handling” guidelines. In addi-
tion, the regulations require a licensed dietician or nutritionist to make
certain that meal plans are “nutritionally adequate.” These food-related

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rules allow assisted living operators a great deal of flexibility as they plan
and deliver food services. In addition to the state regulations, however,
assisted living administrators can set “house rules” relating to food and
eating.
The managers of each assisted living residence had food-related rules
in addition to those described above. For example, food storage was an
issue at most settings, including Huntington Inn, where one resident,
Donnie, explained to us that Mr. Hill prohibited residents from bringing
leftovers from the dining room to their rooms, calling it a “public health”
concern. Mr. Hill argued that not only could the food attract vermin, but
also that some residents might mistakenly eat spoiled food that could
sicken them. (In fact, this strict house rule was the outgrowth of an epi-
sode in which a resident had placed cooked food in a cupboard.) Donnie
complained that this action unfairly limited residents who could appro-
priately handle leftover food; she admitted to us that she occasionally hid
food in a napkin and brought it to her room to eat at a later time. Mr.
Hill instructed the cleaning staff to remove from each resident’s apartment
food that they believed to be at risk of spoiling, including fresh fruit and
other snacks brought by resident’s family members. Such practices, while
practical in nature, left some residents questioning whose home it was,
after all.

Whose Home Is It?

Each assisted living resident is a unique person with his or her own prefer-
ences and needs for a sense of home. Group living presents a challenge to
some as they adapt to sharing space and daily activities like meals with
others. The staff of the facilities in our study found ways to respond to
these challenges by creating separate spaces for residents whose physical
and psychological needs differed markedly from the others. They also
resorted to measures like using assigned seating in the dining room that
seemingly challenge the goal of supporting resident choice. However,
practices designed to meet the needs of the larger assisted living commu-
nity—such as keeping the peace in the dining room—sometimes took
precedence in the balance between restriction and accommodation.
In the assisted living setting each resident has his or her own living
space, in most cases a small room or apartment. For a few this space was

156 INSIDE ASSISTED LIVING

within a shared room. To a large extent, residents personalized their own
rooms with items brought from home or, for some like Dr. Catherine, with
all new furnishings tailored to fit the dimensions of a 400-square-foot
unit. The variety of decorating styles helped us to appreciate the differ-
ences among residents, and they shared with us stories about their lifelong
collections, pictures of extended families, and items purchased during
world travels. In the larger assisted living facilities, many residents spent
time in their own apartments, napping, watching television, talking on
the telephone, reading, or visiting with another resident or family mem-
ber. Throughout the day there were many interruptions, primarily from
staff members delivering clean laundry, doing housekeeping chores, ad-
ministering medications, or reminding the resident about the next meal
or an arranged social activity. The staff at most of these facilities had been
instructed to knock before entering a resident’s apartment, and for the
most part this was the practice. The amount of time between the knock
and the turning of the doorknob, however, was sometimes so short as to
be imperceptible. The staff learned which residents were sensitive about
privacy and which were not, but if a staff member felt the need to enter
an apartment uninvited, he or she would do so.
Some residents grumbled about overly intrusive staff, but a more
common complaint had to do with other residents—described as people
who “don’t belong.” This category included residents whose physical
health had declined to a point where they required a great deal of physical
assistance and those who acted “strange” because of dementia, mental
illness, or other causes. We heard comments as well as complaints about
residents who dressed in strange ways, such as wearing multiple layers of
clothing or patterns that did not match, and an occasional lack of clothing
or public disrobing. At the Chesapeake, people complained about resi-
dents who napped in the public sitting areas—why didn’t they just go to
their rooms? We also learned about residents who entered others’ apart-
ments without invitation whether or not they were present, sometimes
even lying down on the bed and taking a nap. Rare instances of theft were
described. Mrs. Clinton reported missing food, knick-knacks, and dollar
bills, attributing this to residents with dementia who wandered the halls.
When told by the staff to lock her room, she reminded the assistant direc-
tor that Laurel Ridge had failed to install a working lock on her door. At
Huntington Inn, Frances chose to stay in her room reading or watching

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television rather than deal with what she described as the “gossip” among
the women who regularly sat at “The Forum.” She and others also com-
plained about the smell of urine from one resident who was incontinent.
But the six or seven women who regularly met to talk in The Forum de-
scribed each other as friends; Karen even thought of one woman, who
was 102 years old, as “like a mother.” Residents regularly demonstrated
tolerance toward others. One woman in this group had almost no short-
term memory and was prone to wearing her slip on the outside of her
dress or two different shoes. But she was also friendly, and the others
simply teased her gently or guided her to her room as needed.
Occasionally, residents were disruptive in the dining room, and this
upset everyone present, including the staff. Three of the residences had a
segregated area for serving meals to individuals who needed extra help to
eat because of physical or mental disability. The Chesapeake, Middlebury
Manor, and Huntington Inn each designated a locked section of the build-
ing for individuals with dementia (or related conditions), while Laurel
Ridge chose to keep those with varying levels of mental functioning inte-
grated by placing them in apartments throughout the building. However,
the management at Laurel Ridge did use a separate dining room to sepa-
rate out about 10 physically frail residents who in some cases needed to
be fed. In general, most facilities considered an individual who needed
hands-on assistance in eating as too impaired to continue residing in as-
sisted living. The Chesapeake required families to retain a private aide for
their relative if they wanted to delay a transfer to a nursing home; some
of the residents there helped blind or confused tablemates with cutting
food and finding items on the table while also encouraging them to eat.
Only in the small homes was it common to see a resident who needed to
be fed by another person having her meal served at the same time as the
others.
Some residents of the Chesapeake wondered, “Whose home is it any-
way?” in response to rules about assigned seating and the meal schedule.
While others might share this query, because assisted living is also a place
of work and a licensed business, traditional notions of “home” become
complicated. Residents might not have the final word on matters such as
when to eat or who lives in the facility or whether a staff person will ac-
company them into the shower. Those who might prefer to manage their

158 INSIDE ASSISTED LIVING

own medications are not permitted to do so because of the potential for
harm to themselves or others.
We saw instances in which residents and staff responded in both posi-
tive and negative ways to the restrictions imposed by group living. Beyond
the dining room dynamics, residents found and created a sense of home.
We heard statements like “It’s become my home,” “Here I can choose,”
and “This is where I belong.” When out for the day or overnight with
family, many residents would comment that they looked forward to get-
ting back “home” to the assisted living facility. Some described the other
residents and staff as “like family,” and we saw countless acts that indi-
cated this was true. For example, some staff members visited hospitalized
residents or came in on their days off, bringing a grandchild or a pet to
visit. Residents would check on each other, genuinely concerned when a
next-door neighbor missed a meal or was sent to the hospital.

In the Name of Safety

Preservation of autonomy and privacy are among the formally stated
goals of assisted living, yet competing objectives such as providing for
around-the-clock oversight, safety, and security, and the realities of group
living can impinge on fully actualizing these values. Residents must relin-
quish some degree of autonomy and privacy in exchange for assistance
and oversight. Most residents seem to understand the need for this trade-
off; perhaps they are realists. As we observed, assisted living residences
vary in how they support the values of personal autonomy and privacy in
overt and subtle ways.
At each of these assisted living settings, we heard from the staff and
management about the importance of the services they provided. They
knew that many residents’ lives depended on them, and they had exam-
ples to prove it. One of the tensions we observed and heard described
related to the need to protect residents from harm while at the same time
respecting them as adults. Because of concerns about safety, restrictions
are imposed and enforced. Management and staff would often incorrectly
blame “state regulations” when having to enforce an unpopular rule.
Residents and family members more often than not would be willing to
accept the restriction when the “regs” were evoked despite the fact that

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they were sometimes being inaccurately applied. Examples included re-
quiring all residents to receive assistance with medications and taking a
shower (at Huntington Inn), mandating that residents were not to cross
the busy road to the north of the property (at the Chesapeake), requiring
that the staff check on each resident at regular intervals (e.g., every two
hours) through the night, and the in-room food storage restrictions de-
scribed earlier.
These rules were created with the safety of individual residents and
the larger assisted living community in mind. For example, the rooms at
Huntington Inn did not have showers; instead, residents used one of two
shower rooms that were not disabled accessible and had reportedly anti-
quated and difficult-to-adjust faucets. Mr. Hill insisted that a staff mem-
ber be present when each resident showered, if only to adjust the water
temperature or offer a steadying hand should a resident become dizzy. Al-
though the state regulations permit capable residents to self-administer
their own medications, in practice this rarely occurred. Neither Mr. Hill
nor Michael Baker at Middlebury Manor (both with prior nursing home
experience) believed that assisted living residents should be in charge of
managing their own medications. Even if a specific resident was capable
of doing so, the risks outweighed the benefits in their views: one resident
could inadvertently access another’s or the resident could mismanage his
or her own medications. Michael told us that a major reason that people
moved into assisted living in the first place was because they could not
manage their medications at home. So those residents capable and moti-
vated to manage their own medications saw concerns about safety limit
their choices in these matters.
At Huntington Inn, two residents were permitted to take a shower
without assistance. Each had a diagnosis of mental illness, and Mr. Hill
was sympathetic to their unique anxiety about having another person
present when they showered. At Middlebury Manor only one resident
(out of 42) was permitted to manage his own medications. At the Chesa-
peake, residents who did not want a staff member to open their apart-
ment doors to make certain they were safely in bed during the night
could sign an agreement indicating that they, along with their families,
accepted any harm resulting from foregoing this safety check. While these
and other safety measures were an annoyance to some of the residents,

160 INSIDE ASSISTED LIVING

others, including some family members, greatly appreciated the regular
oversight.
The administration of each facility was responsible for interpreting
and implementing the state’s assisted living regulations. For example, the
state regulations indicated that residents were to be treated with respect
for their independence, choice, and privacy—that is, in line with the social
model concepts described in Chapter 1. At Laurel Ridge the staff inter-
preted this to mean that residents could make their own choices even if a
choice might result in a poor health outcome. For example, although
special diets were available for residents with diabetes, if an individual
chose to eat sweets, the facility would not prohibit it. Steve, the food
services director, explained, “We got to give it to them.” When asked why
this was so, he explained that it was the “state rule” because residents
were paying money and should get what they asked for “unless they can’t
think for themselves.” Technically, Steve’s comment was not accurate.
State rules require that resident choice be respected, but also that facilities
be responsible for maintaining the health and safety of residents—two
requirements that can often come into direct conflict.
Still, the example of the “diabetic who ate sweets” is common in as-
sisted living (Carder 2002a). It serves as an indicator of the balance be-
tween responding to residents as autonomous individuals and as “patients”
in a strict institutional sense of the word. Assisted living residences are
neither independent residential apartments nor nursing homes; this in-
between status leaves staff, residents, and their families confused. For ex-
ample, in Chapter 2 we described how Jane’s daughter was willing to
accept the risk of her mother’s escaping through the bedroom window in
order to let her have fresh air. Yet, this was not a choice Rani could allow
Jane’s daughter to make. At Middlebury Manor, Mrs. Koehler’s daughter
fought to allow her mother, who had problems managing her diabetes
before moving into the facility, to stay in assisted living so that she could
“die with a [television] clicker in one hand and a Bavarian cream donut
in the other.” And yet the daughter appreciated the medical oversight the
facility provided: “Middlebury Manor has her so well regulated because
they make them get up—they make them eat three meals. . . . And her
blood sugar is better than it’s ever been. She doesn’t argue with them
because they just say, this is the way it is.” The administrator at this resi-

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dence was proud of the facility’s record of care and of the “medical model”
approach he used. He explained that he hired nurses, even though not
required to do so by state rules, because they were better able to meet the
residents’ complex needs.
The right to smoke was another topic with safety implications. None
of these assisted living residences permitted residents to smoke in their
apartments, but the Chesapeake had an enclosed smoking room, and the
covered front porch at Huntington Inn served as the smoking area for
both residents and staff. Such accommodations were important to resi-
dents who smoked, but with rights come restrictions. Dr. Smith, a resident
at the Chesapeake, told us about the facility requirement that all cigarettes
be stored at the front desk and distributed no more than two at a time.
He said, “I resent that a little bit, because it’s a bit patronizing to me—
kind of treated like I was a kid or mentally defective or something.” Yet,
as a retired military officer, he did “enjoy the structure of this place. And
it’s a little bit like being in the military.”

Medical Aspects of Assisted Living

Most individuals move into assisted living because of health and/or ac-
tivity limitations that make living in other types of environments chal-
lenging. While assisted living is not considered a medical setting, medical
services related to chronic conditions, both cognitive and physical, play a
major role in daily life in these facilities. Many residents use walkers or
wheelchairs, some have oxygen canisters, and others require daily moni-
toring of their conditions. During the months of fieldwork, we saw resi-
dents experience illnesses and injuries requiring hospitalization and reha-
bilitation; heard about complicated chronic conditions such as congestive
heart failure, Parkinson’s disease, diabetes, and Alzheimer’s; and observed
a few residents with terminal conditions receiving hospice care. At the
Chesapeake, Laurel Ridge, and Middlebury Manor, the staff used medi-
cation carts to deliver the many prescribed pills, ointments, supposi-
tories, and inhalers required by residents. The presence of these carts, even
though they differed in style between the three settings, was an ongoing
reminder that most residents had medical conditions that required treat-
ment. Not surprisingly, the provision of health services became a focus of

162 INSIDE ASSISTED LIVING

the daily routine, though in varying ways among the six settings we
studied.
In the small homes, most residents spent the majority of their daytime
hours in the living room or dining room. Rani could more easily keep an
eye on her residents as she prepared meals, cleaned, did paperwork, and
completed a myriad of other chores by keeping them in public view. Medi-
cations were administered, diapers were checked (but not changed), and
vital signs were monitored as needed throughout the day, often in the liv-
ing room.
In the larger settings, these same types of medically related activities
took place in both private and public places. The tension between the so-
cial model of assisted living and the medical aspects of everyday life was
an ongoing theme at the Chesapeake. The corporate office did not approve
of overtly medical practices, such as administering medications to resi-
dents in the dining room, but the staff sometimes did so anyway. Middle-
bury Manor, with its close tie to a co-located and co-owned nursing home,
took an overtly medical approach in assisted living. There, it was not
uncommon to see the staff distributing medications to various residents
as they sat at their dining room tables, as demonstrated by the following
field note recorded about an observation in Middlebury Manor’s dining
room.

Mrs. Fitzsimmons now had joined Mrs. Hoffman and Mrs. Pierson. Shortly before
the food arrived, the LPN brought her notebooks and medical supplies to the
table to check on Mrs. Pierson, who was diabetic. She took a sample of blood
from her finger, recorded the result, and then prepared a shot of insulin, injected
into her arm, or was it her stomach? I had to avert my eyes—kind of bothers me.
Mrs. Fitzsimmons said she didn’t think it was appetizing for them to bring around
the medical waste red plastic bucket, which she had lifted to the table so Mrs.
Pierson could discard the bloodied pad she held over her finger. The nurse
laughed off her comment.

At Middlebury Manor the staff also kept detailed records of each

resident’s weight, blood pressure, and food intake and bowel movements.
A relatively new resident explained the system this way: “They see that I
get my medication. I guess they do that with everybody. Because see,
they’ve got somebody who just takes care of medicine. And she sees that

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I get my medicine. Sometime I get it before I come downstairs. And they
take my pressure practically every day . . . they look after your medical
needs. Because the other day they had one of those care takers—she’s
catching everybody as they came to breakfast—‘Did you have a bowel
movement yesterday?’ I said, ‘Why are they doing that?’ They don’t want
you to have a blockage. They do something before it happens.”
Another aspect of medical care concerns the people who provide the
services. The majority of staff members at each setting are direct care
workers, most of whom are not licensed in medical care but receive on-
the-job training. The Chesapeake, Middlebury Manor, and Laurel Ridge
(the three largest facilities) had licensed nurses on staff, although their
duties and the physical design of spaces for medical activities differed.
Staff at the Chesapeake wore uniforms of khaki pants and a collared shirt.
At Middlebury Manor and Laurel Ridge, most of the direct care workers
wore scrubs like those seen in some physician’s offices and in hospitals.
These two facilities had nurses’ stations where the residents’ medical
records were stored; a nurse could usually be found here. In contrast, the
Chesapeake’s “wellness center” resembled a small corporate office. Hun-
tington Inn took another approach, with staff dressing in casual clothing
(like Mr. Hill). A tiny office, referred to as the “nurse’s station” despite
the lack of any licensed nurses, served as the location for storing medical
records and medications. Mr. Hill had a long-term relationship with a
physicians’ practice, including a psychiatrist who regularly visited some
of the residents; he also arranged for mobile lab services so that residents
did not have to leave the building for routine lab work, including blood
draws, mammograms, and heart monitoring.
The fact that many assisted living residents have one or more medical
conditions, physical disabilities, and cognitive illnesses can lend an insti-
tutional feel to an assisted living setting. Yet the degree to which each
setting either felt or looked like it provided medical care varied. For exam-
ple, administering medications at mealtimes is convenient for busy staff
and is preferred by some, though not all, residents. At Huntington Inn,
on the same day the mobile X-ray technician could be seen wheeling his
equipment down the hall, the woman from “mobile pets” might also be
there with a friendly Weimaraner. Such scenes suggest that, though medi-
cal conditions and services occur in assisted living, they represent only
part of the day.

164 INSIDE ASSISTED LIVING

 Similarities and Differences across Settings

The culture of each assisted living setting evolves on the basis of its his-
tory, leadership, and unique pressures, as well as because of demands that
are common across settings. The staff and management of a facility ulti-
mately determine how restrictive or accommodating they will be in re-
sponse to these pressures and to resident needs and preferences. These
decisions significantly affect how residents experience everyday life in
assisted living. As we have seen, the fact that each assisted living home
serves three daily meals does not begin to describe the distinctive ways in
which this task is accomplished by staff and experienced by residents.
For example, although similar activities took place at each setting, the
details differed. Both the Chesapeake and Middlebury Manor had regu-
larly scheduled lunch outings and shopping trips, as well as occasional
wine and cheese socials and musical performances. At the Chesapeake,
lunch outings were to bistros and upscale restaurants, while the Middle-
bury Manor group went to family-style restaurants. At the Chesapeake,
nice varieties of wine were served in glass goblets; at Middlebury Manor
the staff poured wine from a gallon jug into the same type of small plastic
cups that they used at other times for dispensing medications. The many
other activities common among the assisted living settings we studied—
including church services, visits to the beauty salon, manicures, and
monthly resident council meetings—differed just as the people living there
varied in terms of social class, life experience, and expectations.

Is There a Typical Day in Assisted Living?

In trying to learn about the experiences of people who live in, visit, or
work at assisted living facilities, we have largely discovered that there is
no “typical day.” While there certainly are structuring features, such as
the provision of meals and the handling of medical and other tasks, such
as personal care and housekeeping, both the ways in which facilities
achieve these tasks and the everyday lives of individuals residing there are
highly distinctive. The requirements of group living, including staff sched-
ules and collective events, constrain daily routines, but there were indi-

E V E R Y D AY L I F E I N A S S I S T E D L I V I N G 165
viduals who had managed to sustain their lifelong interests and flourish
in a setting that matched their needs, while others found an entirely new
routine and a social context unlike their prior lives.
The “typical day” in assisted living is composed of many factors, in-
cluding the many “places” that assisted living represents to the people
who live, work, and visit there. Assisted living is simultaneously a resi-
dence, a business, a licensed place, and a workplace. The mix of these
elements varies depending on one’s role within assisted living. An assisted
living residence has institutional qualities but differs from traditional
caregiving institutions, in part because of the efforts of the staff to respond
to residents as individuals while at the same time balancing the realities
of group living. As described at the beginning of this chapter, the diversity
among and within assisted living settings challenges our ability to answer
the seemingly simple question, “What’s a typical day like in assisted liv-
ing?” Not only do the people who reside in assisted living vary in terms
of their needs, life experiences, and personal preferences, but in addition,
assisted living owners, managers, and employees create, through their
specific approaches, places that look and feel quite different from one
another. In sum, these assorted characteristics merge and form the basis
of a varied everyday life in assisted living.

166 INSIDE ASSISTED LIVING

 NINE

` Aging in Places

A ging in place is frequently discussed as a key philosophical goal

of assisted living. The concept broadly refers to enabling older
adults to remain in their current or preferred environment, with necessary
adaptations and supportive services, to the end of their lives (Bernard,
Zimmerman, and Eckert 2001). The assisted living sector has adopted
and adapted this concept, so, once an older adult moves into assisted liv-
ing, the assumption is that he or she should be able to remain there with
growing support to meet changing needs (Kane and Wilson 2001; Pasta-
lan 1990).
The broad support for aging in place is represented in a statement by
Barry, the executive director at the Chesapeake: “This is, you know, your
last move (as long as you don’t need skilled care), that you can pass away
here with hospice just like you do at your house.” A slightly different view
of “place” was voiced by another Chesapeake administrator, Clare, who
said that the Chesapeake encourages aging in place by having people
transition from independent living to the dementia care unit. Clearly,
to some residents and family “place” refers to their room or apartment,
while others’ views also encompass moves among multiple levels of care
in the same location.
There has been a broad debate among experts about whether aging
in place is a reality for people living in assisted living or whether, in fact,
it even should be a goal (Chapin and Dobbs-Kepper 2001). There is also
the question of whether aging in place encompasses moving within the
same assisted living or continuing care retirement community setting to a
different level of care—such as to a floor or building that provides care
for persons with dementia, as Clare suggested. This chapter examines

167
stability and change in the lives of older adults as they reside in assisted
living facilities. We focus first on what our informants told us about the
decision to move to assisted living, including how a setting is selected. We
continue by discussing issues and opportunities that arise as the older
person moves into an assisted living setting and remains there for some
span of time. In the final section of the chapter we focus on the eventual
departure from the setting, either through death or through a move to
some other housing/care arrangement.
Rather than focusing on aging in place as a singular outcome, how-
ever, we examine the process of how aging occurs in places, ranging from
the community (one’s own home or that of a relative or friend) to assisted
living residences (or varied units within the assisted living setting) to hospi-
tal/rehabilitation centers and “back home” to assisted living or to nursing
homes. We also discuss the continuities and changes during these periods
of residence. Relocation was the initial focus of our research project, but
as we began our observations in the six settings, we discovered that the
concepts of stability, change, and transition are much more complicated
and nuanced than simply moving or staying in a particular place.
As a result, our discussion in this chapter addresses the many issues
related to entering, staying in, and leaving assisted living, which extend
far beyond the simple matters of decline and improvement in physical
health and cognitive function. First, our research reinforced the well-
established finding that most of the older adults living in assisted living
would have preferred to remain in their own homes. Second, although the
move into assisted living is often discussed as if it were a thoughtful con-
sumer decision, our research showed that most decisions to seek housing
in an assisted living facility and the selection of a setting are driven by
crisis events, with limited time to consider options and with prior efforts
at planning sometimes thwarted. Third, the key elements of selecting an
assisted living facility focused on cost, fit, and location. A fourth transi-
tion-related finding is that many of the changes we found in the lives of
older residents were managed without requiring a relocation to another
setting or a higher level of care. Finally, our research also suggests that
aging in place remains a complicated achievement for assisted living. For
aging in place to be the right outcome, the fit between the resident’s needs
and preferences and the assisted living setting’s ability to meet them must
remain in balance through time, a difficult challenge in this dynamic envi-

168 INSIDE ASSISTED LIVING

ronment. We learned that family, financial, and assisted living–related
changes are also critically important to transitions of assisted living resi-
dents. In the end, it will become clear that “aging in place” is not neces-
sarily to be expected, nor should it necessarily always be preferred, in
assisted living.

How Is Assisted Living Viewed?

The great majority of older adults prefer to remain in their homes if pos-
sible. If relocation must occur, assisted living is viewed as substantially
preferable to a nursing home. The daughter of a resident in Valley Glen,
showing the extreme negativity of some in our study toward nursing
homes, referred to them as the “Auschwitz of the elderly”; and another
daughter of a resident there thought that if her mother “had to move into
a nursing home like the one her [aunt] was in, . . . she would just die.”
Dr. Catherine’s and Mrs. Koehler’s dread of the nursing home, discussed
in Chapters 5 and 6, is mirrored by that of Mr. Sidney’s great-niece, who
referred to them as “warehouses.” Surveys for many years have consis-
tently shown that older adults and their families fear and try to avoid
nursing homes (Eckert, Morgan, and Swamy 2004). So the emergence of
the assisted living sector provided an opportunity for care and support in
a less medical, more consumer-driven environment (Zimmerman et al.
2003). Fortunately, there have been notable improvements in nursing
homes over the years, including new efforts to change their overall culture
(Thomas 2001, 2006; Weiner and Ronch 2003). Nonetheless, one would
rarely expect nursing homes to be places where anyone would prefer to
live, and so assisted living is expected to remain a more palatable residen-
tial care option for the future.
At the same time, assisted living is a distant second choice compared
with remaining in the community and in one’s home of many years or, in
some cases, moving into the home of a child or a friend (Lee, Peek, and
Cowart 1998). The latter preference is not universal, however; some of
our respondents (and those in many surveys) clearly stated a preference
to live with relatives, while others do not want to “be a burden” in the
lives of their grown children or grandchildren (Lee, Peek, and Cowart
1998). For those who prefer not to move at all, or who prefer to live with

AGING IN PLACES 169

family, moving to assisted living adds a disappointment with kin to the
emotions accompanying the serious problems or events that require them
to seek a different living arrangement. As a result, decisions about assisted
living are, more often than not, stressful to both the older adult and the
family.
All parties typically recognize that the move carries significance far
beyond a simple residential relocation, because it signals the need for sup-
portive services and oversight that are markers of disability and decline.
In some cases fundamental aspects of one’s status as an adult are threat-
ened by entry into a group setting (such as privacy and freedom to come
and go at will); and cherished daily routines (such as cooking or sleeping
late) may disappear. In spite of these challenges, some older adults we
studied embraced the prospect of entering assisted living, recognizing
positive opportunities that included greater social involvement and a
more appropriate physical environment. They also appreciated the value
of services, such as meal preparation and housekeeping, as well as the
physical care and support available there.

Entering Assisted Living

The Decision to Move

Few of the residents we interviewed said that they had anticipated the
prospect of moving into assisted living or had sought information well in
advance of need. This is not surprising because American culture discour-
ages thinking about or preparing for disability that may appear in later
life (San Antonio and Rubinstein 2004). Also, older adults and their fami-
lies and friends tend to hope that they will be able to remain at home with
support until the end of life. Families often delay for as long as possible
conversations on this sensitive topic, which can result in stress or conflict
if views should diverge. Thus, it is common for an event to force the deci-
sion, often with the added input from an authoritative professional, such
as a physician, endorsing the need for greater care or a safer or more
manageable environment (e.g., one with no stairs).
Most commonly, the decision to move follows a series of changes,
including an individual’s declining physical health or diminished memory,

170 INSIDE ASSISTED LIVING

changes in support systems (such as the loss of a caregiver), or the devel-
opment of new conditions that raise concerns about safety or well-being.
After gradual decline through her eighties, Mrs. Mitchell (Chapter 6) suf-
fered a fall that partially immobilized her. When Hurricane Isabel struck,
her vulnerability alone in her house became a concern for her son. Al-
though she attempted to age in place with in-home support from a neigh-
bor and resisted a move to assisted living, her son finally convinced her
to move. He told her: “Look, my father would not be happy with me if I
left you in this house this winter. It’s just not safe, and it’s my job to make
sure nothing happens to you—you need to do this.” Mrs. Mitchell told
people at the Chesapeake afterward, “Well, you know my son told me
that my late husband wouldn’t like it.” She later accepted the move, say-
ing, “Things sort of fell into place.” Rosalie at Valley Glen is another
example of gradual decline resulting in a move to assisted living. She lived
in a mother-in-law apartment attached to her daughter’s home but became
increasingly challenged by her arthritis and cognitive decline, the first of
which made it difficult to climb the stairs, and the second of which raised
concerns about a variety of safety issues, such as her leaving food unat-
tended on the stove, creating a fire risk. Rosalie’s daughter made the deci-
sion that she was no longer safe and needed to move into Valley Glen,
despite Rosalie’s protests.
For most, an immediate crisis, such as a fall or a stroke (either punc-
tuating a series of changes or on its own), threatened the status quo and
resulted in a move to assisted living. Mrs. Koehler’s story of her serious
fall (described in Chapter 5) and entry into Middlebury Manor is char-
acteristic of this sudden, dramatic change. The majority of residents we
interviewed experienced a sudden crisis—a change in health, housing,
finances, or family circumstance—that prompted an urgent effort to iden-
tify a new supportive care setting.
Given the events that cause the move to assisted living, the decision
to move often involves input from professionals such as physicians, social
workers, referral agencies, or attorneys. Physicians are often accepted as
the authority in determining that an individual, in the midst of a crisis, is
not able to return home. Sometimes the physician confirms suspicions
held by the older adult or family members, but his or her authoritative
voice often seals the decision. While some physicians are familiar with

AGING IN PLACES 171

assisted living and its variations, they are perhaps more comfortable and
familiar with nursing homes, which have existed for much longer. Others
in the professional chain, including social workers or elder care coordina-
tors, may provide input on how to locate, visit, and evaluate alternatives,
although they may not be well-informed or helpful either. Attorneys may
work with families to resolve sale of property, to finalize wills and related
documents, but most especially to establish power of attorney for those
with progressing cognitive impairment. Clearly, older adults lacking chil-
dren or kin to undertake these duties face additional challenges in such
transitions.

A Consumer Decision?
Discussions of assisted living often contrast it to nursing homes as being
a “consumer-driven” sector of the housing and care market in the United
States. This gives the impression that consumers effectively anticipate
their need for assisted living; examine the array of options available; ratio-
nally compare the services and costs; and make thoughtful and informed
decisions among the alternatives. However, as we have discussed (and as
addressed in comments by Dr. Catherine’s daughter in Chapter 6), this
process is not feasible in the majority of cases.
Because decisions about assisted living are likely to be crisis-driven, a
first move usually takes place in the context of crisis. It is necessary to
make a swift selection as discharge from the hospital or rehabilitation
center approaches. Often the choice is made by family members and not
always with input from the prospective resident. There is little time to
investigate a wide array of options, schedule multiple visits to potential
facilities, and make a well-considered choice (Frank 2002). As a result,
the decision is typically made with insufficient time or resources to meet
the standards of the idealized “consumer model” of selecting services.
Instead, there is pressure to find the best option available at the time.
The consumer model also prompts us to expect that unsatisfied cus-
tomers will “vote with their feet,” by simply moving to another, more
attractive alternative. However, our study found only a few instances in
which a consumer’s preferences prompted a change to a new care setting.
Despite some dissatisfaction, most people stayed.

172 INSIDE ASSISTED LIVING

 Increasingly information is available online, including information
from state agencies that regulate and monitor assisted living. But this in-
formation is often limited and cannot provide a sense of whether the place
is a good fit for the individual.
In addition, there is some confusion regarding who constitutes the
assisted living consumer (Carder and Hernandez 2004). In the case of
Mrs. Randall, a resident of the Chesapeake, the consumer appears to
have been the resident herself. Mrs. Randall noted that she had decided
to move out of her home and into an assisted living residence some time
after her children had recognized that living at home was hard for her.
Espousing the view that living with your children belonged to the “olden
days,” Mrs. Randall said: “I haven’t relinquished the power of attorney
yet. I might have to someday, but not yet. I just want to do it myself. My
children’s decisions may not be my decisions.”
But such autonomy as Mrs. Randall’s is often not the case. Many pro-
viders instead treat family members as their primary consumers; after all,
these family members are often the ones who are selecting the setting,
signing the contract, managing payment for services, and contributing to
care decisions. Consistent with the decline- and crisis-oriented nature of
deciding about and choosing an assisted living residence, our case histo-
ries showed that typically families, not the potential resident, made the
initial contact, toured the facility, and decided where and when their rela-
tives would move. A “move-in coordinator” at Laurel Ridge said: “A lot
of times what happens is, the family will come and they will take a tour
and then they will decide how they feel about it. And then if they like it,
they will bring their family member back and to have a look at it.” That
visit, according to our informant, involves families giving the older relative
a “sales pitch” to convince them to adopt the place they have chosen.
In some assisted living settings, such as the Chesapeake, family mem-
bers are treated as the primary consumer; they are asked to make deci-
sions about privileges such as leaving the building, room transfers, and
changes in level of care. Of course, in cases where family members have
fiscal or legal authority for their relative due to dementia or other severe
conditions, such primacy in decision making is expected. The Chesapeake,
however, treated family members as primary consumers for all of their
residents, making sure the family was provided with information about

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services, costs, policy changes, or other important issues. This is an inter-
esting point, and one we will return to as we discuss fit with the setting
and with other residents.

Choosing the Setting

In our study we found that three criteria were key to the choice of an as-
sisted living facility: fit, location, and cost. By “fit,” we mean that the
needs and preferences of the older adult match well with what a particular
assisted living setting offers (Lawton 1981; Rubinstein 1989). Residents
and family members spoke to us about seeking a match between the indi-
vidual and the setting on many levels, including the physical environment,
the services offered, and the less tangible aspects of a setting (e.g., staff
interpretation of privacy standards, the type of residents). For example,
some assisted living residences have a religious affiliation either with a
church or denomination or through the orientation of its owners/leaders
(such as we saw at Franciscan House); this feature may appeal to some
residents or their kin.
Finding a good fit is often a challenge, however. As we have seen from
the diverse profiles of the settings in this study, assisted living residences
offer different mixes of services, have diverse sizes and configurations of
physical space, attract different types of clientele (based, e.g., on race or
ethnicity, religious preference, social class, or the availability of dementia
care), enact different philosophies of care, have highly variable costs, and
offer distinct local cultures and amenities (such as offering barber/hair
salon services or allowing residents to bring a pet). Some facilities feel like
private homes, others like hospitals, and others are more akin to a hotel.
One lesson that visiting assisted living settings teaches is their diversity. If
you’ve seen one assisted living, you certainly have not seen them all.
For many, “fit” referred to a perception that the assisted living resi-
dence was homelike. Family members of residents from both of the small
facilities in our study told us that the decision to select that particular
residence was based on its atmosphere, in which residents slept in typical
suburban bedrooms and passed their time in a living room with others. A
family member of a Valley Glen resident explained, “I had gone to see
several other ones, and it was the only facility closer to a home environ-
ment. And when I saw the loving people, I knew that was it.” But that

174 INSIDE ASSISTED LIVING

type of environment, with more limited activities and services, would not
provide a good fit for some individuals. Fortunately, size does not neces-
sarily mean a lack of homelikeness. Some residents at Middlebury Manor
described it as homelike, even though it was much larger and more medi-
cally focused than Valley Glen and Franciscan House and had a physical
environment that was quite different from these small facilities.
For other participants in our study, an essential factor in the assisted
living decision—as it is in real estate decisions—was location, location,
location. Location refers not only to the physical setting—the neighbor-
hood and the community—but also to the proximity of one’s social net-
work, especially family and friends. At the Chesapeake as many as 50
percent of residents came from distant communities or other states to live
close to an adult child. At both Huntington Inn and Middlebury Manor,
the situation was quite different; many residents had lived most of their
lives in the surrounding communities, and some knew the administrators,
staff, or other residents personally. Thus, preferred locations typically
reflect proximity to the older person’s home or to that of an adult child.
In the latter instances, family members sometimes expressed guilt over
uprooting their parent but saw such a move as the only practical solution
to enable them to provide adequate social contact and oversight.
At Laurel Ridge, which was located just outside a major city, many
residents who had migrated there viewed the assisted living setting, on a
busy suburban highway, as unpleasantly different from their old urban
neighborhoods. They preferred their previously accessible streets and
public transportation, although their physical functions had diminished
so that they would not have been able to use those services had they re-
mained in their prior communities.
Of course, other considerations also drive the choice of assisted liv-
ing. Families were aware of the cost of assisted living and issues of ongo-
ing affordability, and we frequently heard that alternatives were ruled out
quickly if expenses were deemed too high. Financial realities often influ-
enced not only where older adults moved but also (eventually) how long
they could afford to stay in a particular facility. The majority of older
adults or their relatives paid privately for assisted living. A small number
of residents used government funds available through Medicaid waivers,
which support persons eligible for nursing-home levels of care in alterna-
tive home and community-based settings.

AGING IN PLACES 175

 Not only did the monthly charges vary among settings, but so did the
way fees were categorized and presented to the consumer. In some cases,
the charges were bundled so that housing, meals, and services provided
for a given level of care were quoted as a single monthly figure. Elsewhere
some services, such as assistance with mobility or for incontinence sup-
plies, were “a la carte.” Some assisted living facilities charged fees such as
the “community fee,” which was nonrefundable after a certain length of
residency.1 In these cases, there was an established basic fee for room and
board, and then a menu system to select additional services. In this second
model monthly costs were variable and, to some extent, not predictable.
In most cases a premium was charged for more intensively staffed de-
mentia care services, whether these residents lived in the general resident
population or in a separate unit.
In setting their fees, assisted living providers were well aware of the
local markets, the likely competitors, and the growing awareness among
consumers of alternatives, such as bringing services into the home. The
administrators clearly understood that they were running a business. The
administrator of Middlebury Manor said: “We can’t change the physical
plant. So this building—and it’s not, it’s not as nice as newer facilities
are . . . very nice facilities. . . . So really our niche is to get—to really focus
and get back to our niche—is to get back to being the lower-cost pro-
vider.” Those assisted living residences that were challenged to keep their
rooms filled sometimes were more flexible in terms of fees. Both Middle-
bury Manor and Laurel Ridge struggled to fill their rooms and were will-
ing to negotiate service rates. In fact, Middlebury Manor marketed itself
as a lower-cost provider, more affordable than other nearby facilities. As
a way to manage its costs, this facility arranged, through informal risk
agreements, for family members to provide some services there, such as
changing bandages or assisting a relative with bathing.
Perhaps above all, the choice of an assisted living facility (especially
under time pressure) depends on whether or not a preferred provider has
space available. Some of the residences in our study consistently had wait-
ing lists—sometimes long ones. In these cases, families might not be able
to wait until the facility that was their first choice had space available.
Mrs. Drake entered the Chesapeake at a time she considered “too early”
because she was encouraged by her daughter to act so that she would not
“lose her spot.” But waiting lists can often be deceptive, because invari-

176 INSIDE ASSISTED LIVING

ably some on the list will have been forced to select another assisted living
residence by the time a vacancy occurs. And some marketing personnel as
well as concerned family members have been known to exaggerate the
difficulty of obtaining a room, creating a sense of urgency to encourage
the older adult to make the decision sooner.

How Do People Get Information about Assisted Living Facilities?

Older adults and their family members learn about assisted living options
through formal channels as well as by informal communication with oth-
ers in the community. Some assisted living settings, especially small ones,
are “hidden in plain sight,” despite being located on busy streets. That is,
they lack outward signs of being a specialized housing setting and so do
not build public awareness by making their presence obvious. At the other
extreme, Laurel Ridge posted a sign outside the building, along a busy
road, promoting its reduced monthly rates.
Many of those we interviewed reported that they began their searches
with official lists from local agencies or offices on aging. Experts in health
or community service settings also made referrals. For example, workers
at local hospitals referred some of the individuals we profiled to residences
with which they were familiar. Several Laurel Ridge residents told us that
this home had been suggested by physicians at the Veterans’ Administra-
tion hospital where they had been treated. Daughters of two residents on
whom we focused, one at Valley Glen and another at the Chesapeake, had
hired elder care consultants, who provided information and tailored their
suggestions to settings most likely to be responsive to the specific needs of
these older adults.
Despite these formal sources of information, referral by word of mouth
was the most common way that residents and families learned about as-
sisted living settings in their communities. Many interviewees recounted
stories of either an older relative or a friend who had spent time in a par-
ticular facility. The family members of one resident told us that they
learned about Middlebury Manor from friends who were “in a similar
situation with their aging parents.” Also, clergy and religiously based
social services groups, while not expert in assisted living, had referred a
number of residents to Laurel Ridge, based on their familiarity with it.
Referrals were important to the assisted living facilities. Marketing

AGING IN PLACES 177

was a major concern for some (but not all) in our study. To market Laurel
Ridge, its directors visited area hospitals for referrals and developed rap-
port with the hospital staff. They also visited skilled nursing facilities,
anticipating that there might be occasions when patients there would be
discharged to assisted living. The objective of the staff person responsible
for marketing at Laurel Ridge was to keep her assisted living residence
“alive in the community.” She visited local doctors’ offices, community
centers, and churches, giving gifts and providing lunches. She felt that
some of her best referrals came from the people she met during coffee
hours in church on Sunday mornings.
The Chesapeake, part of a large chain, maintained a nearly full resi-
dent census on the strength of its desirable location and reputation, paired
with active marketing in the community. The managers at both Hunting-
ton Inn and Middlebury Manor reported not needing to advertise much,
relying instead on the development of informal referral networks in the
community. Other assisted living settings in our study struggled to main-
tain occupancy rates about 70 percent of capacity but could not afford
slick marketing materials or staff time to do significant outreach.

Things That Cannot Be Known before Moving into an Assisted

Living Residence

Despite significant efforts on the part of those visiting and considering

alternative assisted living residences, certain aspects of life and care can-
not be known until one spends considerable time, as a resident or a visitor,
in each setting. Several factors that may be important are difficult to gauge
from an outsider’s perspective.

Fit with the Setting and with Other Residents

Even though a good “fit” is one of the criteria on which the choice of an
assisted living residence is made, pre-move visits (or “tours,” as the mar-
keting staff say) seldom provide families the opportunity to learn whether
the space, philosophy, services, and social environment will suit their rela-
tive. A visit may not reveal whether there is a commonality in residents’
social traits, such as social class, religion or political views, or whether

178 INSIDE ASSISTED LIVING

the privacy practices or activity levels meet individual needs. Some places,
such as the Chesapeake, encourage the involvement of all residents in
planned activities; this expectation may suit some residents but not all.
For example, we encountered complaints that activities were too female-
oriented, a criticism that the Chesapeake tried to address with a men’s
group. As Dr. Smith reported, “One time Richard took four or five of us
[men] out to lunch. And I thought it was going to be a fairly frequent oc-
currence, but that was it. It never happened again.”
Visits to the assisted living facility prior to move-in may provide a
sense of more or less activity than is the daily norm. Many people suggest
that multiple visits, including some that are unannounced, will be more
informative as to whether the setting will suit the tastes, as well as meet
the needs, of the person who may come to reside there.
Another experience that cannot be evaluated ahead of time is the
impact of living in the same facility with persons with dementia. Cogni-
tively intact residents and their families rarely know what it is like to live
with people with dementia. Some facilities minimize this issue by having
separate units for those with dementia, but people with diminished cogni-
tive abilities are common in the general assisted living resident population
(Morgan, Gruber-Baldini, and Magaziner 2001). In Laurel Ridge, where
the high-functioning and the cognitively impaired residents were com-
pletely mingled within the setting, the benefits and challenges of having
such neighbors can be learned only after living there. Mrs. Perkins claims
not to have known that such people even existed before moving to Laurel
Ridge!
Of course, given that the new resident is often moving after a period
of declining health or an acute event or crisis, few residents visit the as-
sisted living setting before moving. Family members are left to make these
visits and weigh the alternatives, typically with their relative’s preferences
clearly in mind. When it became apparent that Mr. Wilson could not stay
in his home, his son found Laurel Ridge. Several residents said they had
seen the facility in which they now resided or knew of it before arriving,
having worked or lived nearby or driven past it in their communities, but
had never been inside until the day they moved.
In judging fit, there are also situations in which the family’s prefer-
ences might not be the same as those of the prospective resident. The
Chesapeake treated family members as primary consumers and asked them

AGING IN PLACES 179

to make judgments for the residents. Families tend to more highly value
aspects such as safety, while residents value privacy and autonomy. Mrs.
Hatcher became angry when the staff of the Chesapeake removed a chair
she had pushed under the doorknob to prevent the staff from entering her
room during the night. Although it seemed to our ethnographer that Mrs.
Hatcher was capable of making this decision, her family could and did
override her choice. In cases when values come into conflict, we wonder
whose “fit” is actually being considered.
Fit with a setting can change over time, making what was initially an
excellent choice less optimal. While we typically think about an individ-
ual’s progressing dementia or increasing medical needs as challenges to be
considered when choosing a facility, the assisted living residence itself may
also change in ways that reduce fit. A change in ownership, the addition
of a dementia care unit, or turnover of leadership or key staff may result
in significant alterations in the setting, services, or cost that drive a deci-
sion to seek care elsewhere. Nellie at Valley Glen had arrived there after
several prior care experiences, including one in a setting that was sold to
a management firm that failed to make key repairs to ensure safety and
health.
In some of the settings we studied, greater flexibility in the approach
to care enabled even people with terminal illnesses to remain in their as-
sisted living “homes” with support from the area hospice organization.
Field notes from the Chesapeake record the comments of a tearful son
who, mistaking our researcher for a member of the assisted living staff,
expressed his thanks “for letting his mother die in the way she wanted.”
She wanted “to stay out of the hospital and die at home,” which is how
she referred to the Chesapeake. Such flexibility (or its absence) may not
be apparent during an initial tour.

Leadership and Staff

It is difficult to gauge certain intangibles of attitude and orientation to-
ward care in a typical visit to an assisted living residence. Our research
found that there are marked differences in settings, even in those that are
part of chains, based on the style and approach of their managers. The
style and philosophy of leadership also shapes the composition and priori-
ties of the staff members who create the daily experience of assisted living

180 INSIDE ASSISTED LIVING

residents. Fit with direct care staff is perhaps the most salient component
of what it feels like to live in a given assisted living home. These staff mem-
bers provide 90 percent of the direct care to residents and are the ones
who have first-hand knowledge of when change occurs (Stone 2000).
The view of administrators, enacted through care staff in daily rou-
tines, influences the tone and feel of a setting (Mead et al. 2005). Some
family members interviewed at Valley Glen, an unassuming small home,
expressed gratitude for the ability of one administrator to provide such
loving care in her small environment: “I think it is partly that she picks
[staff] people who are decent, but I think it is also that she is an incredible
role model, and they get into it.” Other family members of residents at
Valley Glen talked about the administrator’s role and its importance to
the stability of the residence. In a place like Valley Glen where the admin-
istrator is the owner, there is no less concern about a turnover of leader-
ship changing the nature of the setting. In other settings, we witnessed
frequent leadership turnover, sometimes resulting in significant change.
Mr. Hill, the owner-operator of Huntington Inn, died suddenly dur-
ing our research there, and Mrs. Hill hired a person known to the couple
who had experience as a nursing home administrator. This new adminis-
trator immediately changed the orientation of the facility. Huntington Inn
quickly came to take on the routine and feel of a nursing home. Both resi-
dents and staff were dissatisfied, with several members of each group
leaving during this administrator’s brief tenure. She was replaced by a
manager also known to the family who shared their philosophy of care.
When an arrangement with the second administrator to purchase the
facility from the family fell through, a young woman who had worked
her way up through the ranks at Huntington Inn as Mr. Hill’s assistant
director took on the job as administrator and continued the philosophy
and approach to care that was familiar to both residents and staff.

Long-Term Cost
Residents and families frequently voiced concerns about the cost of as-
sisted living, especially in the context of not knowing the duration for
which assisted living services would be needed. Although prices and
charges are disclosed when a person enters assisted living, providers some-
times change their fees or the way that they charge for their services.

AGING IN PLACES 181

Facilities with flat rates based on one’s “level of care” can change to a
menu-based approach. Over the duration of a stay in an assisted living
facility these changes, along with increased costs driven by changes in
residents’ health and functioning, can result in quicker spending of limited
resources. Mrs. Jackson was cautioned by an attorney before entering
Middlebury Manor to ask what would happen if her money ran out. De-
spite having saved for her old age, because she was now spending about
$3,000 per month, she said, “My money’s going to run out pretty soon.”
In many interviews, both family and residents expressed worry about
whether the money would hold out long enough to enable the person to
age in place.

Moving and “Settling In”

Transitions into assisted living were not always straightforward or linear.

For one resident at Laurel Ridge seven months elapsed from the time she
first left her house for the hospital until she finally settled in the assisted
living residence; her entry was delayed by an interval of rehabilitation,
two falls, and deferral for treatment of an infection.
It should come as no surprise, then, that through our work we dis-
covered that the settling-in process varies for each individual. Responses
from both staff and residents to questions about how long it takes a new
resident to settle in ranged from no time to several months—or even up
to one year, in the eyes of the Chesapeake director. Similarly, reactions of
new residents varied widely, with some adjusting to their new surround-
ings with little apparent difficulty. For others, however, the move was
traumatic and highly emotional.
In part, how one reacts to such a move and adjusts upon arrival is
shaped by life history, personality, attitude, and expectations. Having
interests and activities that could be maintained after the move (such as
in the arts, religion, or the stock market) facilitated the transition, to the
extent that health and resources permitted their continued pursuit. Several
women at Middlebury Manor continued an interest in needlework; at the
Chesapeake Dr. Smith constructed model airplanes; and Mrs. Clinton at
Laurel Ridge catalogued her many paintings and prepared to resume her

182 INSIDE ASSISTED LIVING

artwork. Many residents still attended church with family members or
fellow parishioners.
Obviously, people do not change their core orientations to life, their
likes and dislikes, or their interests and goals when they become residents
of an assisted living home. It is the responsibility of the facility’s staff to
learn about each resident as an individual, and, when residents have de-
mentia, to get information from family or friends to help convey this
individuality. Several of the assisted living residences in our study asked
families to complete life history forms to inform the staff about some of
these details. Without such knowledge, the staff cannot provide person-
centered care, which is an important component of good-quality care.
Residents’ family members are also important in the settling-in pro-
cess. Some staff members complained that too often residents were just
dropped off their first day. They claimed that family members did not help
with the unpacking or provide moral support as their relative dealt with
the complex meaning of the move. On the other hand, from the perspec-
tive of family members, these moves—and often the accompanying clos-
ing down of the parent’s household—were accomplished with significant
tangible and emotional effort on their parts. Doubtless there is a range of
family support from high to low through this transition because some
families are emotionally close and local while others are emotionally or
geographically distant.
One area in which families are commonly involved is the downsizing
that must occur when a family member is moving from a house or an
apartment into a smaller assisted living unit. Another is dealing with the
related financial and legal transactions. Belongings are reduced to little
more than bare essentials, and furniture and real estate may need to be
sold (Ekerdt et al. 2004). Along with disposing of belongings and prop-
erty, family members may also be engaged in attempting to establish eli-
gibility for Medicaid waiver funding, dealing with insurers, and gaining
power of attorney, all the while continuing to attend to their own daily
jobs and relationships with their own children and grandchildren. Mrs.
Koehler’s story is one of several reflecting these combined challenges.
The administrators and staff of the various settings facilitate resi-
dents’ adjustments in a variety of ways. Rani, the manager at Valley Glen,
focused a great deal of time and attention on her new residents, cooking

AGING IN PLACES 183

their favorite foods to make them feel at home. Maria at Franciscan
House concentrated on ensuring that the new residents’ medical needs
were being met and on helping them to integrate into her stable daily
routine. Mr. Hill showed the new residents the dining room and pre-
sumably introduced them to others during meals. The manager at Laurel
Ridge recognized the need for a social worker to help in this settling-in
process but was unable to add one to the staff because of the necessity to
minimize staff costs.
The importance of getting to know other residents early in the set-
tling-in process was viewed as important. In fact, some managers and staff
members discouraged family visits early during the transition, to encour-
age the new arrival to interact with others and begin to engage with activi-
ties and staff on site. Dr. Catherine’s daughter (Chapter 6) indicated that
she cut back on shared meals with her mother, “trying to help her get, you
know, interact with people there. And that seems to be sort of their first
way of meeting each other is through their table companions.”
Many times, other residents were helpful in assisting with transitions
and adjustments —after all, they had been through them before. The resi-
dents at Middlebury Manor created an informal welcoming committee,
volunteering to introduce incoming residents and show them around the
facility. The administrator of Middlebury Manor recognized the need for
this group; while the committee was never made official, the adminis-
trator relied on and encouraged the residents’ informal efforts to ease in
newcomers.
Obviously “settling in” is a highly individual matter, with definitions
of what it means varying widely. The attitudes of those first moving into
an assisted living facility vary from anger and sadness to acceptance and
optimism. These individuals have to learn to live in a new physical envi-
ronment, with a new set of peers whose circumstances, interests, and
actions may conform to or differ greatly from their own. They also may
need to adapt to a new daily routine, new smells, and new noises. Paired
with whatever circumstances prompted the move, these demands may be
a significant stressor on an older adult.
Despite this potentially difficult transition, newly arrived residents
experienced varied reactions. Some continued along their trajectory of
physical or cognitive decline. Other individuals went through periods of

184 INSIDE ASSISTED LIVING

anger or depression, and still others faced accelerated decline in their
functioning. This was often the case for those with dementia, who typi-
cally found the unfamiliar environment and new routines highly confus-
ing for a period of time.
Not all of the residents had negative reactions. Some experienced
improvements in their psychological and physical well-being after settling
into the new environment; after all, assisted living was intended to supply
them with needed support. Those who had lacked desired social contact
found new friends, as did Mr. Sidney and Mrs. Perkins, or expanded so-
cial networks. Still others benefited from regular health evaluations, regu-
lar receipt of their prescribed medications, and oversight of appetite and
other markers of potential health problems, as well as the removal of the
demands of home maintenance and meal preparation.
Creating a personalized environment by hanging photographs on the
wall, placing belongings on a bookshelf or windowsill, and bringing fur-
nishings from one’s previous home are a few ways in which settling in
takes place. In nearly all of the rooms we visited we saw family photos
and other personal items that gave the feeling of a homelike environment.
In facilities that accepted them, small pets also made the setting more
familiar. Many of these personal touches were often present in the rooms
of individuals with dementia, despite the fact that they might not recall
the identities of all of the people in the photos or, poignantly, that those
depicted were no longer living.

Once a Resident: The Complexities of Change while Aging

in Place

How Long Do Residents Stay?

One question frequently asked by researchers, policymakers, and con-

sumers of assisted living services is how long residents remain in any given
setting. Our study was not designed to provide statistical estimates, but
other studies have shown that on average the older adult who moves into
assisted living will remain there less than 3 years, with stays ranging from
very short term, due to planned rehabilitation, death, health decline, or
immediate dissatisfaction, to an exceptional few residents who remain for

AGING IN PLACES 185

many years (Hawes, Phillips, and Rose 2000; Phillips et al. 2003). Thus,
some individuals reside in an assisted living facility for years with relative
stability in health, fiscal, and familial status.
However, the more common pattern over an extended time is a con-
tinuation of the decline in mental and physical health that initially brought
the person to assisted living—or the development of new problems. The
potential for stability, most particularly in how well the environment fits
a resident’s preferences and needs, is shaped by the reality that older per-
sons in assisted living typically have severe chronic health or progressive
conditions, such as problems of mobility or dementia. For example, ear-
lier research showed that more than half of residents in assisted living
settings from four states used devices to support mobility, and the average
resident had limitations in two of six areas of daily life (e.g., getting in or
out of bed, eating, bathing, and mobility) (Morgan, Gruber-Baldini, and
Magaziner 2001).

Staying or Moving: The Tip of the Iceberg in Understanding Change

When we began our research, we were interested in residential transitions
of assisted living residents, specifically moves into and out of assisted liv-
ing. This narrow point of view quickly broadened to examine how indi-
viduals in assisted living experience stability and the multiple types of
changes in their lives during their stays. Most of these changes, rather
than prompting relocation, result in some adaptation on the part of the
person, the family, or the assisted living setting. So our research quickly
expanded beyond the study of staying or moving to include many ele-
ments of the unfolding dynamics of residents, staff, and facilities in as-
sisted living.
Changes we observed were of numerous types and degrees of impor-
tance. They included acute health episodes (such as falls or facility-wide
flu outbreaks) that required residents to visit hospitals or necessitated
restrictions on visiting; residents’ changing rooms within the facility due
to events such as renovations, the establishment of a new dementia care
unit, financial challenges, or health needs; changes in the ownership or
administration of the assisted living facility, with potential changes in
services and approach to care; turnover of direct care staff; and changes
in family support and involvement in the care of the resident or oversight

186 INSIDE ASSISTED LIVING

of services (due to death in the family, an employment-driven relocation,
or shifts in family relationships). The most common change was in a resi-
dent’s health or functioning, including decreased mobility, problems re-
lated to medications, or the emergence of new health conditions to com-
pound those already present (Ball et al. 2004).
One key lesson we learned is that care facilities can absorb numerous
changes without residents’ having to relocate to another assisted living
facility or to a nursing home. The changes may, however, alter the fit be-
tween the needs of the older adult and the physical environment or ser-
vices of the residence. In such an instance, aging in place may not be in
the individual’s best interest. As we saw in Chapter 4, Mr. Hill, the owner
of Huntington Inn, defined personal mobility as important and required
that residents be able to get themselves to the dining room for meals.
Although other rules were flexibly enforced, limited staffing necessitated
that residents be self-sufficient in this manner. In that setting, mobility,
including use of a walker or wheelchair, was a pivotal element of aging in
place.
Again, residents and their kin sometimes avoided thinking about the
potential next step in the housing and care trajectory. For example, Terry,
the daughter of a resident at Franciscan House, said, “I’m a planner, be-
lieve me. I plan everything.” But in terms of where her mother might need
to go next, Terry confessed, “I’m not even going to think about it until it
happens.”

The Social Interpretation of Change

Stability and aging in place were the goals of those residents who enjoyed
their assisted living home, or who worried about a move to a potentially
less desirable alternative. As one resident said of her future, “I’m here for
good!” But the determination of whether or not a resident could remain
in the current environment did not rest on the resident’s or family’s choice
alone. Ongoing evaluation of residents’ status by family, staff, physicians,
and administrators fundamentally influenced how a particular change
was interpreted. Some changes could be managed, allowing aging in place,
while others, including those that crossed particular thresholds such as
the mobility standard at Huntington Inn, might require relocation.
This chapter has already discussed some factors, such as financial or

AGING IN PLACES 187

facility changes, that may prompt moves. Of particular interest to us was
the more interpretive process that occurred in determining whether a
change in a resident was meaningful—that is, whether it had reached a
particular threshold where some action was required in response. Often
the action considered was a move to another setting. As a case in point,
by Maryland regulation, each resident’s medical status should be evalu-
ated by a licensed nurse every 45 days. This evaluation does not always
occur as scheduled, but it is intended to determine the person’s designated
level of care. Even this process was somewhat interpretive, for we observed
distinct differences between residents designated at a similar level within
or across facilities. It was sometimes difficult to understand why some
residents were transferred to a nursing home while others remained in the
assisted living setting. It is not clear whether and to what extent the need
to maintain sufficient occupancy to sustain staffing or profitability, having
“favorite” residents, or other subtle considerations helped to determine
outcomes of changes relative to relocation decisions and resulted in incon-
sistencies in how the rules were enacted.
Even apart from regulations, the staff and directors convey messages
about changes in health or behaviors to each other and to family mem-
bers, sometimes using value-laden labels. For example, the staff at Middle-
bury Manor referred to Mrs. Koehler as “nursing home material,” indi-
cating their assessment that her care needs had moved beyond what the
assisted living setting could or should provide. While such comments may
sound negative, they suggest that staff members are aware of behaviors
or problems, such as repeated hospitalizations or falls, that serve as “red
flags” that the person’s functioning no longer fits with the level of medical
services or staffing provided in the assisted living setting. In such cases,
the level of acceptable risk, the capacity to bring additional services to
bear, and financial matters all may shape when—and whether—a reloca-
tion is completed.
Staff members sometimes showed more flexibility in their assessments
when care could continue to meet a resident’s need despite decline. One
woman with dementia at Huntington Inn (dubbed “Mother” by the staff
because she carried a baby doll) was sometimes disruptive in the eyes of
others living there, but she was not required to move into the secured
dementia care unit. The staff seemed to like “Mother” and did not press
her family to change her room, even though other residents who seemed

188 INSIDE ASSISTED LIVING

similarly impaired were required to move to the specialized unit. It did
seem that residents who were favorites of the staff, especially some who
had been there many years, may have benefited from greater flexibility in
the interpretation of rules.
The concerns about whether changes will lead to relocation, probably
to a less desirable circumstance such as a nursing home, may lead resi-
dents to try to cover up health conditions or progressing dementia that
might trigger such a feared change. Whether hiding deteriorating health
conditions or problematic behaviors places anyone at significantly greater
risk is an important question that remains unanswered.

Departures from Assisted Living

While we saw instances of moves from one setting to another to seek a

better “fit” to the resident’s needs, to lower costs, or to seek higher-quality
services, most of the residents on whom this study focused, once settled,
remained in place for a span of time. Inertia, familiarity, fear of moving
to a less desirable setting, the stress of the move, community fees, conve-
nient location, or satisfaction with the setting meant that moving as a
consumer choice to another assisted living was infrequent. We have al-
ready discussed a number of reasons prompting departures, including
erosion of fit due to changes in a resident’s physical and cognitive func-
tioning (changes that required more medical services or supervision), the
search for a setting that provided desired amenities or services, prefer-
ences of family members, or reactions to the quality of the environment.
In some instances departures are initiated by the consumers—either the
residents themselves or their family members—while others are prompted
by the facility’s perceptions about its capacity to provide appropriate care
and meet the person’s changing needs. Assisted living settings vary widely
in the criteria (both the assisted living facility’s rules and those mandated
by states) for requiring residents to leave due to level-of-care needs, spe-
cific medical care concerns, or behavioral problems (Hawes et al. 2003).
Regardless of the fit between the resident and the facility, there is
always an eventual departure from assisted living—even if the departure
involves a hospice-supported death in the setting. In some views, other
types of departures from assisted living might be deemed as “failures,”

AGING IN PLACES 189

most specifically failures to age in place. Our research suggests that leav-
ing is much more complicated, in that there are multiple types of depar-
tures and diverse stories of how and why a resident moves out of a par-
ticular place. Thus, while it is tempting to view resident departures as an
indication of “consumer choice,” most moves out of assisted living are
not necessarily the residents’ choice.
First, departures result from death following chronic illness or an
acute event, which would by some definitions constitute having success-
fully aged in place. Death accounts for the departure of approximately 15
percent of assisted living residents each year, including those cases where
residence in assisted living lasted until a final hospitalization was required
or hospice care was needed (Zimmerman et al. 2005b). Ambulances tak-
ing someone to the hospital are a familiar sight at assisted living facilities,
and in some cases, these trips will be the final departure from assisted
living.
Another approximately 15 to 20 percent of assisted living residents
leave their current setting each year, typically for more health-care-
oriented settings, such as nursing homes (Zimmerman et al. 2005b). Such
moves are prompted either by a health emergency or by the recognition
and gradual decision that adequate care and medical services can no
longer be provided to the resident in the assisted living setting. In some
cases, moves to a nursing home occur because the resident has run out of
money to pay for assisted living care and are driven by eligibility for Medi-
caid after personal resources are spent down.
While not within the control of the consumer or provider, state rules
and policies also play a role in determining when departures occur. Some
states require that residents who need skilled nursing care be discharged
from assisted living, and others allow residents who are dying to remain
there only if hospice care, delivered by an outside agency, is in place (Mol-
lica, Johnson-Lamarche, and O’Keeffe 2005).

Avoiding a Departure from Assisted Living—When Possible

The issue of cost as a factor in departures was raised earlier. We learned

that several of the assisted living facilities in our study quietly worked
with residents who were running short of money to maximize the length

190 INSIDE ASSISTED LIVING

of their stay. In some cases, a family member could hire care aides pri-
vately or undertake certain chores, such as laundry, to minimize costs at
the assisted living setting. Middlebury Manor would move residents to
smaller rooms without a private bath or to the adjacent nursing home (on
Medicaid) when their money ran out. The Chesapeake offered a small
church-funded stipend to a few individuals. Because Laurel Ridge typi-
cally had less than full occupancy, it offered 10 percent of its open rooms
to people with low income at reduced rates. It did this through an in-
house subsidy referred to as the “Pastoral Fund” because clergy were so
active in the history and daily life of the residence. The executive director
said: “It’s good for the community, it’s good for the resident—why leave
an open bed, when you can get some amount of money?”
Laurel Ridge declined to use the Medicaid waiver program in favor
of the Pastoral Fund, a decision supported by the facility’s corporate
office. Some other assisted living settings did use the state’s Medicaid
waiver program, which had a limited number of slots available for people
in assisted living. Longtime residents at Laurel Ridge also had facility
support to remain if they had “spent down” their funds over many years
of residency there. Mr. Hill at Huntington Inn was adept in working with
residents to help them become eligible for the state waiver, advising them
and their relatives regarding the related policies and procedures. Smaller
assisted living residences typically had few resources other than Medicaid
and adjusting their fees to assist residents to finance their care.

Is Aging in Place in Assisted Living a Reality?

The ideal of aging in place has mixed support among the facilities where
we conducted our research. Several of the assisted living settings aspired
to provide aging in place by expanding services (sometimes from a menu
at increased cost) or embracing the use of hospice within their regular
operations. In other cases, managers or corporate offices identified assisted
living as one step along a theoretical “continuum of care”; thus, moving
individuals along to a higher level of care as their capacities declined is
based on policy. The director at the Chesapeake told us that the staff at
this facility begin discussing with relatives the need to move a resident to
their dementia care unit in advance of the move, as soon as early signs

AGING IN PLACES 191

appear. In some cases this eventually escalated to threats of discharge in
the face of extreme family resistance. The staff there also prepare the fam-
ily member for the move and the increased cost of specialized care. Else-
where this process might prompt a search for the next setting for care,
whether another assisted living residence or a nursing home. As noted
above, there is a risk that signs of decline or diminished functioning might
be hidden by some residents and families who do not wish to move (or to
pay more).
Beyond differences in how facilities approach the aging in place issue,
there lies the more fundamental question from earlier in the chapter: Is
aging in place always the most desirable outcome for assisted living pro-
viders or residents? In our study we learned that assisted living homes, as
well as their residents, experience significant changes over time. Turnover
of leadership, changes in corporate ownership, or shifts in the mix of resi-
dents over time may make a particular setting a poorer fit for a particular
resident even if he or she has not experienced significant change. While
we typically think of the changes that erode fit as those occurring in resi-
dents’ physical or cognitive functioning, the settings themselves provide
an additional dynamic that can dramatically alter the fit between person
and environment in a positive or negative way.
Because needs of residents, aspects of the assisted living facility, or
both change through time, the outcome may be significantly diminished
fit. Residents or their kin may become less satisfied with the setting, the
providers may be incapable of meeting a resident’s needs, or both may
recognize the need for a change. Nellie, whom we interviewed at Valley
Glen, had experienced a dramatic decline in the quality of care and ser-
vices in another assisted living facility when it was sold to new owners.
We expect that Valley Glen’s environment and routines changed when
Rani decided to nearly double the number of rooms by constructing an
addition to her small home after our research concluded there. We have
already recounted the upheaval that occurred at Huntington Inn after
Mr. Hill died and was replaced by a manager from the world of nursing
homes.
With few exceptions, the assisted living sector developed to provide
services to older adults whose needs were limited and primarily nonmedi-
cal. Early developers learned that initial fit with the environment could
easily erode over time as residents aged in place. They had to adjust their

192 INSIDE ASSISTED LIVING

services accordingly or ask residents to leave. As primarily for-profit busi-
nesses, most assisted living providers have no choice other than to be
concerned about the fiscal bottom line; thus, they are left to balance their
clientele’s growing needs for care with the cost of these services. Decisions
about keeping a resident—permitting aging in place—are sometimes
driven by concerns other than the preferences of their resident and family
consumers.
On the opposite side of the equation, increasing services often trans-
lates into increasing costs, which are ultimately borne by the consumer.
When this is the case, some individuals have no choice other than to seek
a lower-cost alternative, and a significant proportion worry about what
will happen once their money runs out. Further, if residents remain in
these settings as they continue to decline, it becomes unclear how and to
what extent they would ultimately differ from nursing home residents.
So, rather than being a somewhat idealized philosophical issue, aging
in place as an outcome and a value runs into real-world constraints from
many sides. Some of the assisted living administrators we interviewed in
this study indicated that they believed that assisted living was moving in
the direction of being more like nursing homes as the health of current
residents declined, as newly admitted residents entered with poorer func-
tioning, and as states’ regulatory standards were developing in directions
reminiscent of those for nursing homes. Certainly the future of this philo-
sophical goal for assisted living settings is questioned more broadly today
than a decade ago.

Aging in Places

We have learned from our research in these six assisted living settings that
aging occurs in places. While many people do live out their remaining
years in assisted living, with intermittent hospital stays, temporary resi-
dence in a nursing home, or rehabilitation visits along the way to a final
illness, other residents find it necessary to move to a higher level of care
(often a nursing home). Another subset will move through several set-
tings, sometimes ones that are quite different—including some moves
back home— as their needs change or their facilities change in ways that
reduce fit or satisfaction.

AGING IN PLACES 193

 Many dynamics, both personal and those related to the physical and
social setting, can and do influence whether a person thrives, stabilizes, or
declines when he or she first arrives at assisted living and over subsequent
months or years of residency; these same dynamics shape whether the
particular assisted living setting meets a given resident’s needs or prefer-
ences regarding critical issues such as privacy and opportunities for social
engagement. The challenge to residents and their families is to recognize
and react to dynamics of change and to monitor the quality of fit over
time to ensure that the setting, given available alternatives and constraints,
is the best possible match for the resident. For many older adults, aging
in place has, for now, been supplanted by aging in places as our society
and economy continue the search for new models of how to provide flex-
ibility, autonomy, and personalization in housing and care for older adults
in balance with conflicting goals such as safety and oversight.

194 INSIDE ASSISTED LIVING

 TEN

` The Reality and the Promise of

Assisted Living

A ssisted living communities are an important element of the long-

term care continuum, with more than a million residents and
38,000 to 68,000 facilities as of 2006 (NCAL 2007). Lost in these num-
bers is any insight into the lived reality and promise of life inside these
settings. The findings from this in-depth ethnographic study allow a sus-
tained view of the assisted living experience, providing an opportunity for
better understanding by consumers, their families, providers, policymak-
ers, researchers, students, and others interested in this type of housing and
care. In addition, looking inside the walls gives a view of challenges and
opportunities that make up the future of assisted living.
The first half of this chapter describes eight core realities of assisted
living that emerged across the group of settings we studied. The second
section considers the promise and future of assisted living as informed by
this research. That future is shaped and constrained by both internal and
external factors, such as the “success” of having residents age in place,
the policy and regulatory environment, potentially shifting consumer
care preferences, funding and financing limits, and workforce challenges
clearly already at the doorstep of this relatively new option in long-term
care.

The Core Realities of Assisted Living

Heterogeneity

A common refrain among those familiar with assisted living is that “once
you’ve seen one assisted living setting, you’ve seen one assisted living set-

195
ting.” Some commentators complain about the lack of uniformity (Bruce
2006; Carlson 2005), primarily because, unlike the standardization of the
highly regulated nursing home sector, it allows for variations in both qual-
ity and range of services. They argue that this variability makes it more
difficult to monitor whether dependent older adults are receiving the care
they need and the services they desire. Focusing on consumers, propo-
nents of universal standards for assisted living argue that the heterogene-
ity creates unfair challenges for residents and their families: locating a
facility in one’s own community, much less in another state, is too com-
plicated. Given that the move into assisted living often occurs during a
health or social crisis, comparison shopping might not be possible, yet the
heterogeneity of assisted living residences demands spending time to find
the right place. Further, medical professionals and others who work on
behalf of older persons might not understand that one assisted living resi-
dence, for example, accepts persons with dementia, while another does
not.
Other experts, however, see the range of environments, prices, service
packages, and amenities as a natural response to diverse consumer demand
and as exactly what the concept of assisted living was intended to provide.
If assisted living operators are to provide a setting that is “homelike,”
then it would follow that the wide range of what constitutes “home” in
the broader community would be true as well in long-term care. Thus, for
some, Valley Glen Home meets the standard of home, while for others the
choice would be either the Chesapeake or Laurel Ridge. As demonstrated
in earlier chapters, the diverse settings in the single state we studied vary
in their structural and organizational characteristics and in the lived cul-
ture of that home for all who participate in its days and nights.
We selected our six settings to reflect key structural and organiza-
tional elements identified in other research and policy reports. These ele-
ments include the size of the facility; its for-profit or nonprofit status; its
urban, suburban, or rural location; the services and amenities it offers;
and the socioeconomic and sociodemographic characteristics of the resi-
dents served. For example, all of the residences studied here are catego-
rized as “for-profit,” yet this designation masks the significant differences
between the small “mom-and-pop” operations (with six or eight resi-
dents) and the larger corporately owned and operated chains. In these

196 INSIDE ASSISTED LIVING

larger assisted living residences, the structural and organizational charac-
teristics are more bureaucratic and hierarchical, with formal differentia-
tion of staff roles (e.g., direct care providers, housekeepers, food services)
and “shift work.” As organizations, the larger residences share more traits
with nursing homes, from which the assisted living sector tries hard to
distance itself. To some people the for-profit designation of the various
settings we studied implies benefits to the assisted living owner at the
expense of the resident consumer; such a perspective belies the ethic of
service which we found in some of these for-profit care settings (Morgan,
Eckert, and Lyon 1995). Some of the owners and operators we inter-
viewed describe how good-quality care has an impact on the bottom line
and contend that profitability is tied to their reputations as providers of
high-quality services.
The structural elements described above are only a framework within
which the assisted living culture emerges. One clear example of the impor-
tance of culture that we observed was how the concept of assisted living
and the stated philosophy of each operator, corporation, or owner trans-
lated into daily life and routines. In examining the marketing materials
of the assisted living residences in the study, we often found statements
of their intentions for how services would be provided. These philoso-
phies, however, were not always enacted with the same consistency. The
key role of administrators within the organization in managing facilities,
staff, and services often determined whether a philosophy was enacted or
discarded.
The importance of the administrator in assisted living culture was
illustrated by the change in leadership at the Huntington Inn (Chapter 4),
where the owner’s philosophy of making staff needs a priority had led to
low turnover, creating an established culture comfortable to both the
workers and the residents. Following Mr. Hill’s untimely death, his re-
placement immediately instituted changes that led to staff dissatisfaction
and turnover and to the relocation of a number of the residents, who no
longer found the setting to be to their liking. Nothing structural about the
place or its stated mission had changed—yet everything had changed.
Similarly, a facility serving primarily those with dementia will differ from
one serving older adults with primarily physical challenges or one where
those two groups mingle (as at Laurel Ridge), even if their structures,

THE REALITY AND THE PROMISE OF ASSISTED LIVING 197

sizes, and missions are the same. One cannot assume that assisted living
facilities are standardized in the way that nursing homes, subject to na-
tional regulations, have been.
This concept of an assisted living culture may also explain what peo-
ple “feel” about a particular assisted living residence when they walk in-
side. It was common for our ethnographers, researchers from other stud-
ies, and prospective residents and their families (who had less experience
from which to make comparisons) to have a sense of how “good” a facil-
ity would be shortly after walking through the door. From quick observa-
tion of residents and staff, seeing the nature of their interactions (or the
absence of such interactions), and smells, sounds, and other elements, we
formulate a sense of the place that goes beyond size, activity schedule,
meal alternatives, cost, and range of services. Whether or not this initial
feeling is borne out over time is another matter. But it does reflect the fact
that the culture of a setting—the everyday experience of living and work-
ing there—is more than the bricks and mortar, the dimensions of a room
or apartment, and the organization.

Dynamic Lives within Dynamic Environments

Residents and their families, direct care providers, and administrative staff
experience change in three ways. First, there are changes driven by time,
as people evolve within the setting. Residents age and their health and
well-being may be affected, families become more familiar with assisted
living routines but may face challenges in their own lives, and staff mem-
bers become more or less skilled or motivated in the performance of their
jobs. Second, people come in and out in the course of a day. Staff members
present during the day may not be present in the evening, and families
who visit in the evening or on weekends may not be aware of routines and
dynamics during the day or during the work week. Third, members of
these various groups also exit the setting. Residents die; staff members
and administrators leave for other jobs or retire. In short, while the walls
may look the same, a consistent dynamic flow of persons into and out of
the facility may also contribute to a changing culture.
The influence of an assisted living facility’s size on aspects of culture
and life for residents, staff, and others in the setting remains a point of
interest. We might expect that changes would be felt more profoundly in

198 INSIDE ASSISTED LIVING

smaller settings, where any one individual has a larger impact on the oth-
ers there. For instance, the death of one resident among five might be more
profound than a death would be in a setting with 65 or more residents.
However, when viewed from the inside, the changes in any one person—
resident, staff, or family—can have a profound impact on others. For
residents, staff turnover, the loss or gain of a friend in the setting, and the
availability of support from kin and others may all make a substantial
difference in quality of life and care. A larger setting allows for more nu-
merous interpersonal contacts, and so such alterations may ripple among
individuals to touch more people’s lives. Or, alternately, the change may
be buffered by the presence of so many others. Once again, there is no
sure way to predict how changes will affect the local culture as perceived
by insiders; what is sure is that such change will be felt.

The Consumer Process versus Crisis Decisions

In the ideal world of assisted living, decisions about the care of an older
adult are planned with full information, consideration of a range of ap-
propriate choices, and sufficient time to weigh the relative costs and ben-
efits of alternatives. But as we have seen, such an ideal consumer-oriented
process is not typical. Our interviews with residents and family members
indicate that the decisions to move into assisted living and then to select
a facility tended to be event-driven. As a consequence, choices were lim-
ited to what was available in the vicinity at that particular moment and
by the amount of time that could be allocated to collecting materials, visit-
ing facilities, and comparing alternatives.
Similarly, many of the changes that require a decision once the adult
is in assisted living, such as whether or not a resident needs to be hospital-
ized, occur quickly. A few, including those involving relocation to a de-
mentia care unit or to a higher level of care, sometimes provide enough
time to plan, although as we saw in Dr. Catherine’s case (Chapter 6), even
knowing that specialized dementia care will be needed does not mean that
all parties will agree on the timing. Assisted living is a setting in which the
staff are familiar with the events that drive various crises, the steps that
must be taken to remedy the specific problem, and many of the alterna-
tives that would be appropriate. Clearly, a trip to the hospital or quaran-
tine for an outbreak of flu needs to happen quickly, requiring immediate

THE REALITY AND THE PROMISE OF ASSISTED LIVING 199

decisions based on previous challenges with residents. In such circum-
stances, the medical model of care in assisted living overrides the social
model of care; individual preferences and autonomy must be placed on
hold to respond to the perceived best interests of the resident.

Negotiating Aging in Place

As discussed elsewhere in this book, aging in place was one of the great
promises of assisted living when it began. Originally, leaders and advo-
cates promoted an implicit promise that once someone moved into an
assisted living residence, he or she could remain there until death. Today
this promise cannot always be kept. The reasons are many. Operators
recognize that there are limits to the services that some assisted living set-
tings can provide due to staffing, physical setting (e.g., disabled accessibil-
ity), or state regulation. Older persons might prefer to move to a nursing
home to receive a higher level of medical care and supervision. Health
care and social service providers weigh in on whether or not specific indi-
viduals can or should remain in a given assisted living residence, and these
individuals do not always see eye to eye. For example, as we saw in Chap-
ter 5, during one of several nursing home stays, Mrs. Koehler’s own doc-
tor did not believe that she needed ongoing skilled nursing care, but the
medical director at the nursing home disagreed.
Enacting aging in place has turned out to be a highly variable process,
presenting challenges for those inside assisted living. Declines in a resi-
dent’s health over time raise questions of whether doing so is possible or
even desirable. Consequently, what arises is a dynamic situation wherein
an individual’s changing needs and (frequently) desire to stay confront the
ability or willingness of facility management to be of help. The resulting
situation is often a negotiation entered into by parties who have at their
core the same basic interest: the well-being of the resident. The question
remains how much assisted living should be expected to do in terms of
medical services, end-of-life care and other services extending into the
terrain that was traditionally claimed by nursing homes.

200 INSIDE ASSISTED LIVING

 Place Matters: Assisted Living Is Not a Nursing Home
Despite their heterogeneity, many assisted living settings share a broad,
common definition that distinguishes them from nursing homes. That
definition, espoused in state regulations and by trade associations, char-
acterizes them as providing a social model of care, designed to support
residents’ independence, dignity, privacy, and choice. Although facilities
vary in how explicitly they communicate their philosophy among employ-
ees and in their marketing materials, nearly all providers readily acknowl-
edge that they have no desire to transform their settings into nursing
homes. Nonetheless, the distinction between the two is in flux. Our study
identified many instances where residents’ independence, dignity, privacy
and choice were not always respected when challenging health or cogni-
tive needs arose. Further blurring the line between nursing homes and
assisted living, movements are under way to bring “culture change” into
nursing homes. Such changes include patient-directed care and buildings
designed to be more homelike (Thomas 2001, 2006; Weiner and Ronch
2003). At the time of this writing, Maryland, like some other states, does
not require assisted living residences to have a licensed nurse on staff,
although many facilities do, and others contract with a nurse as needed.
Another critical difference between assisted living settings and nurs-
ing homes is in regard to who pays and who regulates. In assisted living
today most financing is private, coming from residents’ funds or from
relatives or through arrangements such as the Pastoral Fund at Laurel
Ridge. Nursing home care, in comparison, is available to any U.S. citizen
who needs that type of care and meets the financial eligibility guidelines—
that is, nursing home care is a public entitlement. Because of this, stan-
dardization and regulation focuses on the care settings where the highest
percentage of total costs are being covered by Medicaid funds from fed-
eral and state (public) sources—i.e., nursing homes. Given that Medicaid
is a health-based program, the focus of nursing homes on the medical
aspects of residents’ care should not be surprising. Some assisted living
settings accept Medicaid payment on behalf of residents who qualify for
that program, but the Medicaid agency, the Centers for Medicare and
Medicaid Services (CMS), permits states to define and regulate assisted
living, including safety and quality standards. For these (and other) rea-

THE REALITY AND THE PROMISE OF ASSISTED LIVING 201

sons, the level and type of oversight required of assisted living settings
pales in comparison to that of nursing homes.
Residents and staff members view assisted living as a superior alter-
native to the nursing home for all except those who need ongoing skilled
nursing care. As we have learned, determining who needs skilled nursing,
and at what point in their health trajectory, is a complex and sometimes
idiosyncratic process. In some cases the need and timing are clear, while
in others, the decision of the administrator or medical personnel to
transfer or not to transfer a resident can seem arbitrary. For example,
Mrs. Koehler (Chapter 5) was able to move from the adjacent nursing
home back to assisted living because of her personal relationship with
the owner’s family, according to her daughter. In other instances, as we’ve
described, moves to the nursing home are a consequence of running out
of funds rather than health changes. Still other residents are transferred
to nursing homes from assisted living because they have complex medical
care needs.

People Matter: Assisted Living Is Highly Interpersonal

Assisted living is fundamentally a people-oriented service business, in which
a resident or the resident’s family exchanges payment for room, board,
and care. The six care settings we have described in this book demonstrate
the variety and complexity of the relationships among the residents and
between the residents and the workers and senior staff members who care
for them and assist them in negotiating their lives and needs. In smaller
settings, such as Valley Glen Home or Franciscan House, the personal re-
lationships that develop between residents and their caregivers can some-
times be described as quasifamilial. For example, the ethnographer’s note
describing the care taken in braiding Miss Helen’s hair in Chapter 2 shows
the underlying personal connection between resident and caregiver; de-
scribing such actions as merely “grooming” belies the emotional bond
witnessed here.
The story of “Mother” at the Huntington Inn in Chapter 4 shows
how special feelings of affection among staff members toward a confused
resident who wandered out of the building and fought with other resi-
dents prevented the administrator from moving her to the locked demen-
tia care unit. At this assisted living residence we also observed close rela-

202 INSIDE ASSISTED LIVING

tionships among a group of female residents who humorously referred to
themselves as The Forum. Within the larger facilities we observed greater
gender diversity and the formation of “couples” between men and women
sharing common interests. Thus, we found the social and relational world
of assisted living to be rich and diverse. Elements of a successful social
environment included a friendly and dedicated staff and a population of
residents who were compatible in background and mental acuity.

Fit Matters: Person to Environment

How well a particular individual fits in with other residents and with the
staff in the setting, and how well compensatory services serve particular
people, is an important and continually negotiated process throughout
each individual’s stay in assisted living. We discussed the evolving nature
of residents’ fit with their environments in Chapter 9. We found that it is
not only residents who change: we were astonished at the ongoing de-
velopments in some settings, including turnover of staff and leadership,
changes to the physical environment or its uses, change of ownership, and
alteration of the philosophy of care. Consequently, negotiating and sus-
taining the fit between a person and a setting is more challenging than
simply addressing the resident’s health status or situation at any given
time.
We might argue that the diversity and the absence of standardization
in assisted living facilities today serve to support negotiations of people
and place by providing choices intended to meet diverse needs and pref-
erences—in short, to maximize fit. In some cases, and up to a point,
personal relationships can serve as a buffer against change. In others, fit
erodes to the point where the assisted living facility, physicians, family
members, or some combination of these groups drive a move to a new
care setting—another assisted living facility, care at home, or the nursing
home.

Business Matters: Assisted Living Is a Business

Whether it is small or large, rural or urban, an assisted living residence
must be viewed as a business, based on consumers (either the resident or
a family member) purchasing room, board, and care services from a ven-

THE REALITY AND THE PROMISE OF ASSISTED LIVING 203

dor. Whether the assisted living facility is a profit or nonprofit business,
and whether it is motivated by a mission to help older adults and/or the
bottom line, its managers must hire staff members, maintain the physical
plant, and take in sufficient profits to continue offering services. In the
larger corporately owned and operated settings, stakeholders extend to in-
vestors who expect financial gain. Thus, a core element of assisted living
is who pays and from what revenue sources.
Overwhelmingly, assisted living is financed through private funds
from its consumers. Among our six settings, however, the funding sources
varied. In four of the assisted living settings, people eligible for Medicaid
waivers were accepted, although waiver “slots” for assisted living place-
ment were in short supply. (The waiver is described on page 229, note 2.)
In the two settings that did not accept Medicaid, other privately funded
subsidy programs or accommodations were in place to assist a limited
number of current residents who were running low on funds. As illus-
trated by two of the focal cases, and by many other residents we met, fi-
nances affect older persons’ ability to move into or remain in assisted liv-
ing. Such alternatives provide some “cushion” to the current occupants of
assisted living, softening the business aspects slightly, but not resolving the
larger issue of affordability, which will be discussed later in the chapter.
For managers, expenses for facilities, food, and, most important, staff-
ing must constantly be weighed against revenues, which in most cases
derive from the monthly fees (packaged or à la carte) collected from resi-
dents. Empty rooms or units reduce the assisted living owner’s income;
such losses must be balanced while new residents are sought to fill those
vacancies. On the other side of the equation, families report the stress of
managing and preserving money to keep a parent in place and of some-
times having to add their own money to a pension or having to use the
profit from the sale of a home to fill a gap. Often families are also moni-
toring or paying their parent’s bills for assisted living and other expenses,
such as medical services, and providing for necessities such as transporta-
tion to medical appointments, clothing and toiletries, medications, and
personal supplies, including those for hobbies and interests.
The challenge of being a successful business is perhaps greatest for
operators of small homes, where one person or a couple must be respon-
sible for all the tasks of providing direct care to residents, planning and

204 INSIDE ASSISTED LIVING

preparing food, overseeing the staff and facilities, and maintaining rela-
tions with family members, as well as performing all of the necessary busi-
ness duties. While the operators of the two small assisted living residences
in this study managed most of these duties themselves, doing so clearly
was demanding. In our view, they thought of what they did in terms of a
mission to help others and support their families, not as a profit center.
Nonetheless, the bottom line had to matter.

The Promise: Challenges and Opportunities in Assisted Living

We end this view inside assisted living by looking forward. As this rela-
tively young sector is maturing, new challenges arise and existing ones
continue. Indicative of this ongoing process is the fact that a federally
established working group failed to generate a definition for assisted liv-
ing that all participants could endorse (ALW 2003). We continue to lack
a societal consensus on what assisted living is or what it should be.
Challenges and opportunities for providers include the dynamic pol-
icy and regulatory context, dilemmas arising from the success of aging in
place, the critical role of sustaining a high-quality workforce, and the
constantly shifting preferences of consumers regarding how, and where,
to receive services in later life. Later in this section, we discuss the ongoing
challenges to consumers, which include assisted living affordability and
accessibility and the ongoing difficulties of understanding options and
making decisions within such a dynamic and diverse sector.

The Dynamic Policy and Regulatory Context

As we have already seen, in every state assisted living moved quickly from
a nonregulated sector to one having some degree of regulation. No federal
regulations currently exist. But even the current state regulations, deemed
insufficient by some experts, have added significant new responsibilities
for inspections, care planning and reporting, which perhaps weigh most
heavily on small assisted living residences with limited staff. State, county,
and local governmental regulations set the stage on which the reality of
life in assisted living is enacted, with periodic inspections by entities as

THE REALITY AND THE PROMISE OF ASSISTED LIVING 205

diverse as the fire marshal and health department. This regulatory context
is dynamic within the current system; how regulations will expand in the
future is unknown.
Our research revealed that current assisted living regulations are in
flux. Managers reported that the emphasis placed on aspects of their op-
eration by state regulators varies from year to year. One year assisted liv-
ing residences might be responding to an emphasis on food and nutritional
issues (e.g., are menus posted and refrigerators cold enough?), and the
next year the focus may be facility control of over-the-counter medica-
tions used by residents. As a result, inspections were cause for anxiety
among assisted living managers, a fact that was sometimes noticeable to
residents and their families. Among the smaller residences in Maryland,
state regulations were often seen as a burden, taking up valuable time that
would be better spent serving residents’ needs.
In the next several years, the type and extent of regulations placed on
assisted living will be influential in how this care setting develops relative
to other alternatives. It remains unclear whether today’s limited state reg-
ulation will persist in light of the inevitable occurrence of negative events,
especially as assisted living populations become older and frailer, and per-
centages of residents with dementia climb. A common governmental re-
sponse to a negative event is to attempt to address it through regulations,
an approach that can never prevent all possible bad outcomes when ap-
plied to such a vulnerable population.
Two regulations under discussion in Maryland as our study con-
cluded in 2006 would require “awake overnight staff” and the hiring of
a full-time nurse. It is believed that these requirements, clearly more easily
met in larger assisted living settings and nursing homes, would help pre-
vent bad things from happening to residents. But they are also likely to
have unexpected outcomes, such as significantly increasing the costs for
housing and care and moving the assisted living option beyond the reach
of some potential consumers or more rapidly depleting resources for oth-
ers. Some residences that are now operating on a shoestring might even
be forced to close. This pressure to try to regulate away risk can be seen
as moving assisted living much closer to nursing homes in terms of the
autonomy and choices that might be available to residents.

206 INSIDE ASSISTED LIVING

 The Success of Aging in Place: Is Assisted Living Becoming the New
Nursing Home?
Pressures beyond those of regulation have been pushing the assisted living
sector toward looking and feeling more like nursing homes, especially
those of a few decades ago. When it was a new option, assisted living at-
tracted residents who had arrived at the point in their lives where a deci-
sion about housing and care was required. They chose assisted living on
the assumption that they would age in place, with additional services to
meet growing needs. Since then, both assisted living residences and nurs-
ing homes have experienced an increase in the severity of physical and
cognitive problems among their residents. The move to the nursing home
(possibly from an assisted living residence) happens later in an individual’s
trajectory of health problems, when he or she is sicker. Assisted living
settings receive requests to allow residents to stay as long as possible, so
they, too, house people with more problems requiring support and medi-
cal care. In short, some of the appeal to consumers and providers that
fueled the rapid, initial development of assisted living as an alternative to
a nursing home has been muted by the challenge of successfully enabling
residents to age in place. Some commentators say that assisted living resi-
dents look like nursing home residents of 10–20 years ago. Whether that
is a positive or a problematic outcome is debatable.
Based on our study of six different settings, we conclude that assisted
living is resisting becoming the new nursing home, at least in terms of the
regulatory requirements that define the contemporary nursing home.
While in many cases assisted living residents look like nursing home resi-
dents, assisted living settings today remain free to vary how they address
needs and preferences, offer services, and select amenities. But there are
limits to what assisted living facilities are willing and able to provide
within state regulations, and there are risks of litigation should something
go wrong. Some bring in hospice to provide additional care and sustain
residents to the end of life (as with Karen in Chapter 4), but others man-
date that when residents reach an end point that is distinct, they must
move to a higher level of care. Home operators must constantly weigh
their risks, resources, and options and, in some cases, convey the bad
news that “Mom must go.”

THE REALITY AND THE PROMISE OF ASSISTED LIVING 207

 Sustaining a Good-Quality Direct Care Workforce
Finding motivated people already involved in providing assisted living is
fairly simple: many operators of facilities and many members of their
direct care staffs work there because of the rewards of helping others and
because of a love for older people. It is also simple to locate individuals
for whom this work is “just a job, just a paycheck,” and not a lucrative
one in many cases. One of the major concerns we heard from operators
of assisted living facilities is the ongoing effort to find, train, and retain
the “right” staff. Studies over many years have shown uncomfortably
high rates of worker turnover in long-term care, and assisted living is no
exception. We observed considerable turnover at all levels during the
fieldwork for this study and took note of problematic staff members being
terminated. But there were also individuals who had been doing this work
for many years.
Providing direct care to older adults can be physically and psychologi-
cally demanding and typically is poorly paid. Some bosses expect—and
get—the worst from their employees, from absenteeism to an “it’s not my
job” attitude toward their work. Given the key role direct care staff and
other staff play in the overall quality of life and care in assisted living
(Zimmerman et al. 2005b), finding employees who discover sufficient
rewards in the work to counterbalance its demands remains the goal.
Raising pay might help in recruitment, but that would be mirrored by
rising costs for care, and potentially fewer people residing in assisted liv-
ing; consequently, directors or operators walk a fine line attempting to
find strategies that maximize retention of good people. Mr. Hill at Hun-
tington Inn (Chapter 4) told us that, in some ways, the needs of the staff
come first because the needs of the residents cannot be met without good
staff.
The workforce challenge in assisted living is only a subset of the larger
societal issue of finding and appropriately training enough individuals to
meet the needs that will unfold over the next few decades as the cohorts
of the baby boom move into later life. Assisted living vies for workers with
nursing homes, home care agencies, and hospitals, all of which require
staff to provide daily care and support to their clientele. Some point to
immigrant workers to meet this need; others focus on effective use of

208 INSIDE ASSISTED LIVING

technology to help fill the gap. But the reality is that well-motivated peo-
ple are required for assisted living facilities to remain in business.

Shifting Consumer Preferences and Options

Assisted living is no longer the shiny new option among long-term care
alternatives. As this approach to elder care has matured, many other op-
tions for senior housing with service have been developed, including Green
Houses (Thomas 2006), intentional or co-housing communities where
groups of like-minded individuals create their own version of senior hous-
ing (Yeoman and Peebles 2006), and “naturally occurring retirement
communities” (or NORCs) with added support services (NORC Public
Policy 2007). These and other new programs have developed to meet the
needs of adults who want to age in place within their current, or an alter-
native, community. Just as assisted living was once a hot new concept,
these options are now discussed with enthusiasm and seen as providing
even more varied alternatives for the coming baby boomers. Another
recent growth area, active adult communities, will also present interesting
questions as their “active” population becomes less so with the passage of
time.
Clearly, what develops next will be driven by consumer preferences,
which can be hard to predict. But preferences are typically moderated by
cost, so the alternatives will also be shaped by either personal finances, as
has been the case for assisted living, or public funding, as has been central
with nursing homes. Some of the above options attempt to minimize costs
through using or developing interpersonal networks of reciprocity, sub-
stituting for family bonds to provide care and support when these are
unavailable. But ultimately, both the marketplace and preferences may
create numerous or few additional competitors for the existing nursing
homes and assisted living residences of recent decades.

Funding and Financing Care: The Affordability of Assisted Living

Today’s system of care in assisted living is not available to everyone. It is
most accessible to those who can afford to pay privately, either from their
own savings or, more rarely, through a private long-term-care insurance

THE REALITY AND THE PROMISE OF ASSISTED LIVING 209

package. The system has a major gap for moderate- or low-income indi-
viduals, who may vie for limited state or other subsidy funding but will
otherwise be priced out of even considering assisted living care. Currently,
their choices include care by family or friends or, if they are eligible, a bed
in a nursing home, funded by Medicaid. Given the tight economies of
assisted living residences and the fact that they need to generate profits
while keeping prices at a competitive level, it is hard to see how relying
on the marketplace will generate alternatives for “affordable assisted liv-
ing,” although several innovative programs are attempting to do just that
(Pynoos, Feldman, and Ahrens 2004).
In their interviews with us, both family members and residents made
clear that the cost and affordability of the assisted living residence was a
strong determinant of their choices, and they hoped to avoid a future
move driven purely by running out of money. Moving for financial rea-
sons was an outcome to be avoided if possible. The cost of assisted living
care can dip into the resources of adult children, diminishing their own
nest eggs for retirement and for their own future care needs as well. Some
of these family members told us that they were considering purchasing
private long-term-care insurance so that they would be financially pre-
pared should they ever need assisted living.

The Challenge of Being an Assisted Living Consumer

Whether we are speaking of the residents or the family members as con-
sumers, occupying that role remains a challenge. Diversity among assisted
living settings, while useful in finding a good fit, nonetheless means that
each place you consider provides a different type of space, range of ser-
vices, social environment, and cost, including differences in how the cost
is calculated (what’s included, what’s extra). Trying to sort through this
complexity in finding the best solution for yourself or a relative is chal-
lenging and difficult. Both concrete and intangible elements seem to go
into these decisions, but the transition is fraught with considerable anxi-
ety, including wondering whether you have made the right choice.
Even after the decision is made, the consumer role within assisted liv-
ing is somewhat different from being a consumer at a store. If a consumer
is dissatisfied with assisted living, he or she must consider that complain-
ing may create ill will from staff members or administrators that could

210 INSIDE ASSISTED LIVING

lead to unfavorable reactions in the future, especially if, for example, there
is a desire for the resident to age in place. And, unlike returning a faulty
camera to the store, it is challenging to find an alternative if a resident
wishes to “vote with her feet” by moving. Concerns regarding the alterna-
tive setting may raise questions as to whether that older adult is going to
have a better outcome in a new place. On balance, the bulk of those we
interviewed, residents and their family members alike, were pleased with
the current assisted living setting and often expressed wishes to remain
there.

Conclusions

Over the past two decades, assisted living has become an important hous-
ing and care option for older adults and their families. At its best, it is an
innovative, high-quality long-term care option for people who otherwise
might move to a nursing home. At its worst, it faces those challenges that
are all too familiar from agencies and settings dealing with vulnerable
populations of all ages.
Realizing the issues and challenges that arise as older adults age in
place within assisted living, a variety of advocacy and policy-oriented
groups have arisen to represent consumer, industry, and policy interests.1
However, the positions of these groups are not all alike. Some promote
stronger consumer protection for assisted living, others focus more on
“best practices” for those providing assisted living services, and still oth-
ers push for standardization of assisted living, an outcome challenging the
“consumer-driven” notion of the early days of assisted living’s develop-
ment as a sector. These groups join the advocacy, policy, and provider
organizations that have existed for nursing homes and other specialized
housing and care settings serving older adults.
As assisted living matures as a sector, we see facilities facing chal-
lenges unanticipated by those who started the field: growing levels of
health and cognitive impairment among residents, issues of managing
costs in the face of growing service expectations, and maintaining an
identity distinct from the nursing home as consumers, residents, and some
advocates push to expand options for aging in place. Clearly, pressures
exist to find ways to offer affordable assisted living for those who lack

THE REALITY AND THE PROMISE OF ASSISTED LIVING 211

the resources to pay for market-rate assisted living residences and yet do
not want to receive care in a nursing home. In short, the current system,
while offering options, remains a system in flux and one in which the
consumer remains highly challenged to make choices within a dynamic
environment. Thus, in our view, assisted living is an emerging phenome-
non in step with the evolving needs and demands of aging consumers in
need of housing and care. It is not without challenges. We believe that as
aging boomers increasingly confront personal needs for housing and care,
the drum beat for consumer protections and oversight will become louder
even though the current rhythm of personal and societal values for indi-
vidual choice and autonomy will intensify. In the end, we believe that
some version (or versions) of assisted living will remain among the options
and innovations in caring for older adults.

212 INSIDE ASSISTED LIVING

 APPENDIX

Technical Description of the Research Project

This appendix describes in detail the qualitative research process that informed
this book. Our study, entitled “Transitions from Assisted Living: Sociocul-
tural Aspects” and funded by the National Institute on Aging, was designed
to provide an understanding of the minor and major life transitions experi-
enced by residents in assisted living. Using ethnographic methods, the research
team studied daily life in six settings, exploring interactions among residents,
their family members, direct care staff, and administrators. Data in the form
of in-depth interviews and field notes, collected between 2001 and 2007,
provide the core ethnographic material to help us understand not only the
topic of transitions from assisted living but also the culture of this type of
long-term care. Ethnography offers a perspective different from, but not anti-
thetical to, traditional survey research; it thus contributes to and enhances our
detailed knowledge of life inside assisted living.

Research Design
Research Objectives
The main objective of this study was to understand the social and cultural
factors that led to transfers into and out of assisted living settings. The specific
aims of the research were the following:

1 to examine the social and cultural processes of change and decline lead-
ing to transfer from assisted living;
2 to explore how residents, their families, and the assisted living staff
observe and talk about signs of decline, improvement, normalcy, and
change in residents within the social and cultural environment of
assisted living;

213
 3 to understand how the local explanatory models used by residents,
family, caregiving staff, and administrators influence the processes of
stability, decline, and change and how they relate to decisions about
retention and transfer;
4 to examine how facility-level characteristics shape the processes of sta-
bility, decline, and change.

Our ethnographic research used the qualitative methods of participant

observation, intensive interviewing, and extended focal case study to better
understand daily life inside assisted living, particularly from the perspectives
of the individuals residing there. The basic research design consisted of se-
quential ethnographies, lasting 6 to 10 months each, in six diverse assisted
living settings in Maryland. Following the Collaborative Studies of Long-
Term Care (CS-LTC) typology, we conducted ethnographic studies in two
small, two traditional, and two new-model settings (Zimmerman, Sloane, and
Eckert 2001). We also collected performance-based physical and cognitive
assessment data on strength, capacity to walk, and response to standardized
cognitive questions with a sample of residents. In addition, during the time of
our investigations the state agency responsible for overseeing assisted living
facilities began a two-year series of public meetings on assisted living regula-
tions, and a member of our research team attended many of them.

Ethnography
Ethnography involves research on individuals and groups within their own
sociocultural and/or physical environments—the places where they live or
work. Information is collected primarily through participant observation and
in-depth interviewing. By immersing himself or herself in the setting, the
researcher is able to both observe and participate in daily activities (hence the
term “participant observation”) and thereby comes to understand the nature
and meaning of interactions and ideas through the eyes of those who live and
work in a specific place. In-depth interviews, conducted in an open format,
provide essential information from the perspective of the individuals being
studied, including their daily lived experiences and the processes involved in
formal and informal decision making. The resulting data consist of interview
transcripts and ethnographers’ descriptive and interpretive notes recorded in
the field. In qualitative research, significance is determined not through sta-

214 APPENDIX
tistical analysis but through the interpretation of events and interactions and
the identification of common themes and patterns.

Confidentiality of Information
Before we began our study we sought and received permission from the as-
sisted living administrators to observe and interview in each setting. We sent
letters to residents and their families informing them of the project and offer-
ing the right of refusal to participate in the research. We obtained verbal
consent from every person we interviewed, with that consent typically audio-
taped at the start of the interview. In the book, we have used pseudonyms for
persons and assisted living facilities, and we have altered certain details of
both the assisted living settings and the persons interviewed to protect the
identities of those involved. All research participants are protected by the
confidentiality standards under the Institutional Review Board (IRB) of the
University of Maryland, Baltimore County, as directed by the National Insti-
tutes of Health.

Selecting Research Sites

Assisted Living in Maryland
Assisted living settings in Maryland include both small and large homes
(housing as few as one or two residents and as many as 150 or more) operated
by both for-profit and nonprofit providers. Residents range from the formerly
homeless to the affluent and from individuals who require minimal supervi-
sion to others who are eligible for nursing home care. Assisted living monthly
charges ranged from as low as $400 per month to more than $6,000 monthly
at the time of our study. Maryland is one of a handful of states that uses the
phrase “assisted living” as an “umbrella” category to include a broad range
of settings that in other states might be called “adult foster care,” “board and
care,” and/or “residential care.” Some states, and the major industry trade
groups, use a more delimited definition that requires licensed settings to pro-
vide disabled-accessible apartment units (with private bathroom and kitchen-
ette) and to follow a “social model” of care (Mollica, Johnson-Lamarche, and
O’Keeffe 2005).
In 1996, Maryland officials reclassified small board-and-care homes under
their new “assisted living program” regulations; before that time, homes with
two to four residents had the option of being “registered,” and larger homes

TECHNICAL DESCRIPTION OF THE RESEARCH PROJECT 215

were operated under county and state health department oversight but were
not licensed (Morgan, Eckert, and Lyon 1995). The state’s assisted living reg-
ulations were implemented in 1999 and revised in 2004. Proposed changes
at the time this book was being written suggested revising the definition of
assisted living to include three classifications based on level of care, with
homes that are licensed at the highest level required to employ registered
nurses (OHCQ 2005).

Selecting Research Sites

The goal in selecting research sites for this study was to identify settings that
represented a broad array of assisted living types and residents, rather than
the entire industry of assisted living. For practical and logistical reasons, we
chose six facilities in and around the Baltimore–Washington, DC, region. The
selection criteria included size, profit status, level of care offered, CS-LTC
type, and affiliation (independent or corporate chain). To obtain our study
sample, we initially identified and contacted 21 Maryland-based assisted liv-
ing residences that reflected this diversity. Thirteen of these sites met our
criteria and were in operation at the start of the project. From among these,
we selected six sites that provided rich diversity in residents’ racial/ethnic mix
and socioeconomic status, ownership/affiliation, rural and urban location,
and size. In the initial phase of the project we met with the executive directors
of each assisted living facility to explain the research and gain permission to
include their residence in the study. Each of these settings received an hono-
rarium of $2,500 for the benefit of the residents. The administrators used
these financial gifts to purchase, for example, a piano, lamps, or a television
for a shared living room space.
As noted above, in addition to location and diversity, our criteria for
selecting settings included two other primary considerations: level of care and
the “model” of assisted living.

LEVEL OF CARE

Licensure for all assisted living homes (both small and large) is based on the
levels of care provided to residents who live there. Maryland state regulations
define three levels, denoted as 1 (low), 2 (moderate), or 3 (high) and referring
to the amount of care provided to each individual.1 A person who is mentally
alert and needs assistance only with bathing and dressing is classified at level

216 APPENDIX
1. Someone classified at level 2 generally needs help with three or four activi-
ties of daily living, such as bathing, dressing, walking, and toileting. A per-
son who shows signs of confusion or dementia, has an extensive medication
schedule, and needs assistance with bathing, eating, walking, toileting, and
dressing is classified at level 3. In Maryland, most facilities (approximately 80
percent) are licensed at level 3; this does not mean that every resident in the
setting requires that level of care, merely that the facility is licensed to provide
it. There are few homes in Maryland at the lowest level of care because most
users of assisted living have developed needs beyond this level of care before
seeking such a setting.
An additional level referred to as “3+” permits a facility to provide high-
intensity care to an individual who needs sophisticated medical support or
hospice, but this designation must be approved by the regulating agency on a
case-by-case basis in the form of a Medicaid waiver. This waiver authorizes
an assisted living program to continue to care for an individual whose physi-
cal or cognitive functioning has changed since admission, as long as the set-
ting can demonstrate that it has the capacity to provide the necessary services
without compromising the care of the other residents.

MODELS OF ASSISTED LIVING

As a result of our previous research, we identified three models, or types, of

assisted living residences:

• small settings—those that house 15 or fewer residents;

• traditional settings—those built before 1987, often former nursing or
congregate homes that have been retrofitted for assisted living; and
• new model settings—those purposefully built after 1987 to address the
emergent views and goals of the assisted living movement (Zimmerman,
Sloane, and Eckert 2001).

Table 1 summarizes the characteristics of the assisted living facilities par-

ticipating in the transitions study. As the table shows, assisted living facilities
in Maryland vary dramatically in size, a range prompted by the inclusiveness
of diverse settings under Maryland’s assisted living rules and not character-
istic of all states. We studied two examples of each of the three setting types
listed above. All of the settings in our sample were for-profit businesses,

TECHNICAL DESCRIPTION OF THE RESEARCH PROJECT 217

TABLE 1 Characteristics of assisted living facilities studied

Name Capacity Type Ownership Setting Level

Valley Glen Home 6 Small Owner-operator Suburban 3

Franciscan House 8 Small Owner-operator Suburban 2
Huntington Inn 35 Traditional Owner-operator Rural 3
Middlebury Manor 42 Traditional Family-owned/ Suburban 2
operated
The Chesapeake 100 New-model Large chain Suburban 3
Laurel Ridge 112 New-model Small chain Suburban 3

whether owned by families or part of corporate chains. As is the case for

assisted living facilities at large in Maryland, most were licensed for level 3
care.

Fieldwork

Ethnographic fieldwork (research conducted on site or “in the field”) began

in April 2002. Fieldwork was initially conducted at the two small assisted
living sites, starting with Valley Glen Home and proceeding to Franciscan
House. This was followed by interviews and observations at Huntington Inn,
a traditional assisted living residence; the Chesapeake, part of a large new-
model chain; Middlebury Manor, the second traditional assisted living field
site; and finally Laurel Ridge, another new-model assisted living facility. By
the summer of 2006, the bulk of the data had been collected. However, there
continued to be ongoing contact with administrators and residents to update
the research team on relevant and significant transitions, such as relocations
or deaths among residents, and also shifts in management, staffing, and
ownership.
During the active data collection in the two small assisted living homes,
a project ethnographer spent an average of eight hours per week doing field
research. In each of the larger traditional and new-model assisted living set-
tings, two project ethnographers conducted fieldwork on average four to five
hours per day, two to three days per week for 6–10 months. Time in the field
varied, reflecting the various facilities’ calendars of events and the availability
of interviewees. There were times when the ethnographers arrived at the
assisted living facility at breakfast and did not leave until the close of evening
activities; other times, an ethnographer would visit for several hours inter-
viewing, observing a committee meeting, gossiping with residents and/or staff

218 APPENDIX
members on the front porch, or participating in a craft session. By the end of
the period of intensive fieldwork, we had been present at each site various
times seven days a week and were therefore able to gain information on life
overall inside each residence.

Participant Observation
Participant observation is a key method for conducting ethnographic field-
work. It involves the on-site observation of the physical and social environ-
ment studied and participation in the routines of daily life as they naturally
occur in the field. Participant observation relies heavily on insights generated
by the ethnographers, based on their knowledge of and experiences in the
settings. Extensive field notes, including analytic and expressive commentary,
are written at the close of each visit. In our research, these field notes were
then compiled, shared with colleagues, coded, and analyzed, as discussed
below in the sections on data management and analysis.
One of the ways we gained intimate knowledge of the assisted living set-
tings was to volunteer our time and skills. For example, at Franciscan House
we hosted a holiday cookie decorating party, and at the Chesapeake, we
helped staff the dining room, refilling coffee cups, serving meals, scraping
plates, and clearing tables. Sometimes we ate meals with residents, tasting
firsthand the food being served. We also shopped with and for residents, played
the piano, walked pets, and offered solace. At Middlebury Manor, we assisted
in cleaning out the activities room and recycling a closet full of magazines,
and we served desserts and wine and cheese at socials. During our visits to
Laurel Ridge we had the opportunity to facilitate a resident’s return into the
“art world” after her stroke, as well as help with the mundane but appreci-
ated polishing of fingernails. These are but few examples of how we “gave
back” to the individuals who supported and contributed to our research
efforts.

Ethnographic Interviewing
Another important technique in conducting ethnographic fieldwork is in-
depth, open-ended interviewing. Researchers used guides to structure the in-
terview and elicit information from study participants. Asking the same set
of broad or open-ended questions of all respondents allowed ethnographers
to obtain a core set of data; at the same time, the openness of the questions
allowed for extemporaneous responses and follow-ups by the interviewer.

TECHNICAL DESCRIPTION OF THE RESEARCH PROJECT 219

Obtaining data that was respondent-driven freed the ethnographer to explore
points of interest specific to one individual and opened up new avenues of
thought which were pursued later in the research. Interview guides were flex-
ible and fluid, not fixed or formal. Thus, interview questions were adapted
reflexively, with probes to expand on the informants’ initial responses.
In each of the six settings, interviews were conducted with multiple infor-
mants (another ethnographic term for “interviewee”), including “focal case”
residents, as defined below, their family members, selected direct care staff,
and administrators. Residents who elected not to participate in the research
or who were cognitively unable to give consent were not interviewed. To
broaden our knowledge base and to represent the experience of residents with
dementia, we interviewed their family members, and observed and noted their
interactions in the assisted living residence. Interviews were generally sched-
uled in advance and tape-recorded. Several residents, however, declined to be
taped; therefore, their responses were hand-written by the ethnographer. Sev-
eral short interviews were conducted informally and compiled in field notes.
A number of family members were interviewed over the telephone.
The focus in the interviews was on personal experience, subjective ac-
counts, interpretations, and meaning. Interviews were intended to provide
insights into the perspective of each respondent, and they often flowed more
like conversations than do the highly structured interviews used in standard
survey research. Questions were similar across the groups of residents, fami-
lies, and staff, but the responses reflected their varied perspectives and posi-
tions. For example, the ethnographers asked assisted living residents to de-
scribe the series of events leading up to their entry into the setting, and to
describe their daily lives, both their pleasures and challenges, now that they
had made this transition. Interviews with family members, staff, and admin-
istrators provided alternative perspectives on many of the same events and
circumstances. All interview guides focused on personal history, transitions,
life in assisted living, health, and support. Other sections of the guide addressed
topics relevant to a particular respondent category—for example, aspects of
work life for direct care staff. Guides for interviewing administrators were
tailored toward the specific assisted living facility and addressed such con-
cerns as reactions to new state regulations, increased competition from neigh-
boring assisted living settings, risk management, and creating a dementia care
unit.
To supplement the field notes and recorded interviews, we also collected

220 APPENDIX
marketing packets, copies of residential contracts, and information on the
external environment in which assisted living settings operate, such as materi-
als from policy and regulatory groups.

Extended Focal Case Studies

As part of this data-collection process, ethnographers conducted interviews
with more than 150 residents, approximately 100 of whom were identified as
“focal cases.” Focal cases were selected through purposive sampling, a tech-
nique that enables researchers to pursue cases that represent a range of experi-
ences (Patton 1990).
For each focal case, we conducted both formal and informal interviews
with the resident and with one or more family members, when family mem-
bers were available. We also discussed the residents with staff and other pro-
fessionals, including direct care staff and outside case managers. Copious field
notes also contributed to information on these individuals and their daily
lives. The following paragraphs provide more detail on the fieldwork and the
focal cases described in Chapters 2–7.
The fieldwork for this study began in the spring of 2002 at Valley Glen
Home. We made weekly visits for 11 months and then followed up with Rani,
mostly by telephone, until spring 2007. Miss Helen was selected as a focal
case even though she was incapable of participating in an interview. Instead,
we interviewed her daughter and Rani on Miss Helen’s behalf, and we saw
her at every visit. In addition, she was mentioned in every field note.
We conducted research at Franciscan House from September 2002 through
April of 2003 and then followed up with semiannual telephone calls until the
spring of 2007. Opal took part in three ethnographic interviews and three
supplemental meetings, during which her physical and cognitive status was
assessed using standardized tools. She was mentioned in interviews with fam-
ily members of two other residents and three interviews with Maria, and is
described in all field notes. No one in her family was willing to be interviewed
for this study.
Fieldwork at Huntington Inn began in December 2002 and continued
with weekly visits until November 2003 and periodic visits and telephone
calls until spring 2006. Our ethnographers completed four interviews with
Karen and one with her son Mark. In addition, the events of Karen’s life, in-
cluding her medical condition, moves into and out of Huntington Inn, and
her financial status, were topics of discussion in several formal and informal

TECHNICAL DESCRIPTION OF THE RESEARCH PROJECT 221

interviews with Mr. Hill. Karen was mentioned in many interviews with other
residents and with staff members and in the majority of field notes.
At the Chesapeake, we collected ethnographic field data between Septem-
ber 2003 and February 2007, with the heaviest concentration acquired in
2004. In addition to participant observation and focused interviewing, two
undergraduate interns assisted Dr. Catherine in her quest to bring activities
into the dementia care unit by designing and executing art projects involving
both her and other residents. The interns also photographed and mapped the
setting. In total, there are six interviews relating to Dr. Catherine: one com-
pleted by her daughter, four with Dr. Catherine herself, and one assessment
protocol. Dr. Catherine is cited in 44 ethnographic field notes and in numer-
ous interviews with residents and staff.
Middlebury Manor fieldwork took place between June 2004 and April
2007, with most fieldwork completed in 2004 and 2005. In total there are
nine full-length interviews related to Mrs. Koehler: three with her and six with
her daughters. Nearly 50 field notes and four staff interviews include signifi-
cant mentions of Mrs. Koehler. In total, our research at Middlebury Manor
generated nearly 700 pages of field notes and interviews.
We collected ethnographic field data at Laurel Ridge between October
2004 and February 2007, with most of our information collected in 2005 and
2006. One of the residents at Laurel Ridge was an artist; an undergraduate
intern photographed the entire collection of her paintings to complete a port-
folio for a museum submission. He also visited with residents and took field
notes. In total, there are ten interviews related to Mr. Sidney: six with Mr.
Sidney himself, one with his wife’s great-niece, two with his good friend, Mrs.
Perkins, and one with her niece. Mr. Sidney is cited in 23 ethnographic field
notes and in interviews with staff members.
For analytic reasons, we considered the focal cases as being nested within
a larger-scale “case,” the assisted living setting. Participant observation en-
abled us to identify the distinct and compelling traits of each setting’s culture:
resident care, business management, social life, rules, and values—all the
aspects that make each setting different from others. Thus, we came to de-
scribe our design as “case (resident) within case (setting)” research. Chapters
2 through 7 represent the outcome of this analytic approach.

222 APPENDIX
 Gaining Trust and Access
Gaining the trust of study participants was necessary to the success of this
project. Initial access to the settings and permission to interview individuals
were obtained early in the research. However, the quality and accuracy of
data collected and the strength of relationships in the assisted living homes
were the result of the rapport we established with informants. Residents in-
vited us into their rooms and lives, staff members shared break time, admin-
istrators welcomed us to meetings, and families knew firsthand the benefit of
our research. Overwhelmingly, participants were receptive and positive. The
true test of trust occurred in one assisted living facility where direct care staff
shared in confidence their fears of retribution by management should they
speak openly with us, which explained why we had difficulty getting inter-
views with the care aides in that particular setting.
In each setting, we listened as residents spoke glowingly of grandchildren
and chastised their children, while staff members confided their frustration
with low wages and working weekends. The ethnographers also established
rapport with management, hearing their frustrations with retaining good-
quality staff, the rising costs of doing business, rude family members, or in-
creasing state requirements. As with all ethnography, it was the informal gate-
keeper, a resident or care aide, whose positive opinions of our work helped to
open doors. We appreciate the generous invitations to go behind the scenes,
introducing us to life “backstage” in assisted living (Goffman 1959).

Data Management and Analysis

Team Approach
As data collection proceeded, field notes were written and interviews recorded
and transcribed. This information—in written narrative form—was reviewed
by a multidisciplinary team of researchers representing anthropology, sociol-
ogy, social work, gerontology, and folklore. The research team spent consid-
erable time working as a group, meeting twice a month during the five years
of data collection and for another 12 months after. During these bimonthly
meetings, the team discussed key similarities and differences among the set-
tings and among the numerous individuals—residents, staff, administrators,
and family members—who had shared important details of their lives, both
recent and more remote.

TECHNICAL DESCRIPTION OF THE RESEARCH PROJECT 223

 Data Storage
Field notes and interview transcripts were stored centrally in a textbase. By
the time the field research was complete, more than 15,000 pages of interview
transcripts and field notes were generated. To practically manage this amount
of narrative data, we entered it into Atlas.ti (Muhr 2007), a software program
that facilitates qualitative data analysis by enabling researchers to store and
retrieve project documents, notes, and specific quotations. Atlas.ti allows for
text-based searching on particular words or topics and also provides a struc-
ture for the input of analytical codes, which essentially constitute the frame
of analysis (Charmaz 2006) and render the data meaningful (Lofland et al.
2006). As described below, coding systems permitted retrieval and review of
material from this archive of information on transitions to, and lives within,
assisted living.

Collaborative Coding Process

A coding framework was developed using the grounded theory approach
(Strauss 1987; Strauss and Corbin 1990). Coding is the process of organizing
and sorting data, or as Charmaz puts it, the “process of defining what the
data are about” (2006, p. 43). Codes are the words used to “organize ideas
applied to the items or chunks of data in your field notes or other materials,
or to the answers of the questions asked . . . or, more abstractly, the labels we
use to classify items of information” (Lofland et al. 2006, p. 200). Coding
shapes the framework of analysis, defines what is happening in the field, links
data to theory, directs further data gathering, and eventually allows research-
ers to “sort, synthesize, integrate, and organize large amounts of data” (Char-
maz 2006, pp. 45–46). By interacting with and working through the data,
researchers capture the meaning of the participants’ lived experiences from
the insiders’ points of view.
In the transitions study, the coding process began early in our fieldwork
with initial coding, as the first interviews were returned, and continued
through the duration of the project with focused coding identifying pieces of
narrative by themes or topics. Interview transcripts were read and reread as
researchers worked through the data so that ethnographic material could be
categorized and sorted. Field notes and interviews were compared and con-
trasted until thematic categories emerged to fit the data overall. This process

224 APPENDIX
led to the development of a project code book, which, at the conclusion of
the study, contained a total of 54 codes.
Rotating two-person coding teams, comprised of investigators, ethnog-
raphers, the project coordinator, and graduate research assistants, coded each
project document (interview transcripts and field notes) through a collabo-
rative process. Team members first coded the documents separately; coding
partners then met to examine their independent analysis and reconcile any
differences. Ethnographers did not code their own field notes or interviews.
Unresolved questions were discussed during bimonthly project meetings, and
codes were reviewed and revised as necessary. New codes (introduced rarely
once focused coding commenced) or revised definitions were then entered into
Atlas.ti for further analysis as the work progressed. Thus, coding allowed the
team to identify particular ideas and issues that emerged in the narratives,
which could then be retrieved from Atlas.ti and analyzed in detail.

Data Mining
Once they were coded, the field notes and interview transcripts were mined
for text and quotations relevant to particular topics. For example, narrative
sections that had been coded the same way across multiple documents were
retrieved and analyzed. Specific codes included aging in place (discussions
about the accommodations made—or the lack thereof—to allow a resident
to decline and/or die in the place of residence or elsewhere), the meaning of
time (how time is experienced, in finite units, indefinite intervals, or as an on-
going process or temporal dimension), and maintenance of self (verbal or be-
havioral expressions of personal agency, including references to one’s own
appearance and that of others and cognitive ability, self-medication, mobility,
and discussions of personal possessions). Other codes related to quality of
care, home operations and management, discussions of money, and the physi-
cal and social environment.
The results of structured textbase searches, which could also be restricted
to particular assisted living settings or categories of respondents (e.g., residents
only), were stored and further refined. Related documents were established as
“families” within Atlas.ti to facilitate queries on a subset of data, such as all
materials from the new-model assisted living facilities. Codes were also com-
bined with other codes or word searches to identify text related to topics, such
as autonomy or “settling in” to an assisted living home. To find excerpts related

TECHNICAL DESCRIPTION OF THE RESEARCH PROJECT 225

to autonomy, for example, we searched for words such as “independence” and
“freedom,” and for text coded as maintenance of self, as defined above. To
find text related to settling in, we searched for variations of the words “settle”
and “move,” as well as codes for homelike, emotions, and transitions.

Connecting Codes to Narratives

To develop themes and visualize patterns within the data, we connected coded
text and quotations to emerging theories or potential explanations for our
observations. Memos were generated to record the researchers’ thoughts about
the data and the project. Sometimes researchers wrote memos while coding
the documents or reading through the results of a word or code search. Other
times, they wrote memos to record thoughts while reading the documents
sequentially. The team used memos and other analytic notes to share and
connect ideas across settings and to identify patterns within the data. Then
we used them to compare preliminary themes with further observations on
site. As the study progressed, for example, we documented in memos the mul-
tiple meanings and levels of transitions: personal transitions, peripheral tran-
sitions (such as key transitions of children responsible for an older parent’s
care), setting-specific and corporate changes, and the evolving regulatory
environment.

Analytical Processes
On the basis of our observations and the patterns we saw developing, we used
Atlas.ti individually and in smaller teams to search our coded documents to
cross-check and substantiate or dispel our hunches or insights. We conducted
structured searches on particular codes or within specified “families” of data
related to the topics of interest, and read and reread the narratives in depth.
As we prepared for presentations, articles, and the writing of this book, we
compared and contrasted experiences within and across focal cases, as well
as within individual assisted living settings and across the three categories of
assisted living. We connected ideas regarding how particular cases at either
the “focal case” level or the assisted living “setting” level informed the issues,
dilemmas, and everyday lived experience of assisted living.
Deeper analysis involved identifying themes and testing explanations
against data. We identified, for example, a number of themes related to transi-
tions, including our findings that decisions to enter assisted living are likely
to be crisis-driven, rather than deliberate consumer choices; that many transi-

226 APPENDIX
tions occur in the same setting without relocation; and that for aging in place
to be the right outcome, the fit between the residents’ needs and preferences
must be balanced with the assisted living setting’s ability to meet these needs
over time.

Future Research

For more than five years, our research team sat around the bimonthly meeting
table, hearing updates from the field, discussing field notes and interviews,
and sharing ideas. We used this collective knowledge to analyze themes and
patterns we saw develop. Our experiences in the field and our conversations
around that meeting table helped us all better understand assisted living set-
tings and the people who live, visit, and work there. The findings presented
in this book merely scratch the surface of the knowledge generated by this
study. We continue to build on this research, exploring the topics, themes, and
insights we have gained.
Productive lines of research emerging from the transitions project include
a study of quality in assisted living from the perspective of residents (Morgan,
Eckert, and Rubinstein), a study of physician care in assisted living (Schu-
macher, Eckert, and Zimmerman), a sociocultural study of stigma in senior
housing of various types (Eckert, Rubinstein, Morgan, and Zimmerman), the
meaning of autonomy (Rubinstein and Frankowski), and policy and practice
issues related to medication management (Zimmerman and Carder). Our
intention is to pursue these new lines of research to promote a better under-
standing of life inside assisted living.

TECHNICAL DESCRIPTION OF THE RESEARCH PROJECT 227

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 Notes

Chapter One: Introduction

1. Other possible factors include declining disability rates, widowhood, child-
lessness among older persons, and certificate-of-need limitations.
2. Oregon was the first state to receive a Home and Community Based Ser-
vices Waiver from the Centers for Medicare and Medicaid Services. Under that
waiver, individuals who qualify for “nursing home level of care” and for the
Medicaid financial threshold are eligible to move into an assisted living setting
rather than a skilled nursing facility. Individual residents must also apply and are
accepted as a recipient after meeting two eligibility standards: (1) the individual
must be assessed as needing “nursing home level of care,” and (2) the individual
must meet the state’s Medicaid income criteria. A total of 36 states, including
Maryland, have this waiver, and another 24 states have other arrangements to
subsidize the cost of assisted living for persons with low incomes (Mollica, John-
son-Lamarche, and O’Keeffe 2005). However, states limit the total number of
persons covered by any type of public subsidy for assisted living.
3. The argument for providing private disabled-accessible apartments was
based on social science research about the relationship between older individuals
and their living environments. Powell Lawton and Lucille Nahemow’s (1973)
model of environmental press-competence was influential, as was Langer and
Rodin’s (1976) study of personal control in nursing homes.
4. The American Institute of Architects has a committee called the Design
for Aging Knowledge Community that seeks to “foster design innovation and
disseminate knowledge necessary to enhance the built environment and quality
of life for an aging society” (AIA 2007). The international group organizes work-
shops on topics such as design for dementia, technology, and community de-
velopment.
5. The Omnibus Budget and Reconciliation Act of 1987, or OBRA ’87.

229
 Chapter Three: Opal at Franciscan House
1. Based on a review of assisted living facilities that are certified to receive
Medicaid subsidies as reported on the Maryland Office of Health Care Quality
web site (OHCQ 2006).

Chapter Four: Karen at Huntington Inn

1. As part of their application to the Centers for Medicare and Medicaid
Services for a 1915c waiver, states must specify a limit on the number of individu-
als who may receive specified services. The number limits are referred to as “slots”
(LeBlanc, Tonner, and Harrington 2000).

Chapter Five: Mrs. Koehler at Middlebury Manor

1. Before Congress enacted provisions to the Social Security Act, commu-
nity-dwelling spouses of nursing home patients were at risk of becoming impov-
erished by the cost of their partner’s nursing home care. The 1988 provision,
known as “spousal impoverishment,” helps prevent community spouses from
depleting their financial resources in order to pay for their partner’s care.

Chapter Nine: Aging in Places

1. Some assisted living facilities (half of those in our study) charge a “com-
munity fee,” a one-time charge at the time when the resident moves in or at a
specified time thereafter (e.g., 30 days). As noted in Chapter 5, the community fee
is a one-time charge to cover costs for maintenance and upkeep of the building.
This charge ranged from $1,500 to several thousands of dollars in the residences
in our study.

Chapter Ten: The Reality and the Promise of Assisted Living

1. Assisted living organizations include the National Alliance to Improve
Assisted Living Care, which is composed of 15 elder care, elder law, and senior
advocacy groups promoting stronger consumer protections for assisted living resi-
dents, and the Center for Excellence in Assisted Living, which is a clearinghouse
for research, state regulations, and licensing concerning assisted living, intended
to promote high-quality assisted living, best practices, and policy. Other long-term
care organizations include the National Commission for Quality Long-Term Care,
which has focused on six broad areas needing change: the culture of long-term
care itself, the empowerment of individuals and families, the assisted living work-
force, technology, regulation, and finance.

230 N OT E S TO PA G E S 42 – 211
 Appendix: Technical Description of the Research Project
1. The Maryland regulations [2 Maryland Health-General 19-1801. 310.
07.14.10J (1)–(7)] outline seven conditions under which an assisted living pro-
gram may not admit an individual. Services may not be provided if, at the time of
initial assessment, the individual requires (1) more than intermittent nursing care;
(2) treatment of stage 3 or stage 4 skin ulcers; (3) ventilator services; (4) skilled
monitoring, testing, and aggressive adjustment of medications and treatments
where there is the presence of, or risk for, a fluctuating acute condition; (5) moni-
toring of a chronic medical condition that is not controllable through readily
available medications and treatments; (6) treatment for an active reportable com-
municable disease; or (7) treatment for a disease or condition which requires more
than contact isolation.

N OT E TO PA G E 2 1 6 231
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 Index

Page numbers in italics indicate table.

access, gaining for research project, 223 133; at Middlebury Manor, 77, 188;
active adult communities, 209 social interpretation of change and,
activities: as aid to transition, 182–83; 187; transition and, 117; at Valley
at Chesapeake, 102, 108–9; differ- Glen Home, 31–32, 33
ences in, across settings, 165; food assisted living: definitions of, 2, 4, 11;
and, 152; at Laurel Ridge, 135; level history of, 7–8, 9–11; life in, 1–2; in
of, 149–50; at Middlebury Manor, 86, Maryland, 215–16; in media, 3; mod-
88 els of, 217–18, 218; nursing home
affordability issues, 73, 209–10 compared to, 71; popularity of, 3;
aging in place: change and, 186–87; as views of, 169–70
cultural construct, x; debate over, Assisted Living Workgroup (ALW), 8,
167–68; departures from facilities 11, 205
and, 189–90; duration of stay and, autonomy, boundaries of: at Franciscan
185–86; facility approaches to, 191– House, 40–41; at Huntington Inn,
92; as goal, 167; at Laurel Ridge, 147; 156; at Laurel Ridge, 141–42; safety
at Middlebury Manor, 91; needs of issues and, 159–62. See also choice,
residents and, 96; negotiations of, constraints on
200; in Oregon, 5; questions about
concept of, 8–9; reality of, 192–93; Baker, Carol (nurse): Mrs. Koehler and,
social interpretation of change and, 90, 91; on residents, 80; role of, 77
187–89; success of, 207; wandering Baker, Michael (administrator): as
and, 26–27 advocate, 91–92, 94; dementia unit
aging in places, 193–94 and, 85; finances and, 87–88; role of,
aging services, field of, x–xi 77, 86, 91–93; on state regulations,
alcohol use, 100, 114, 115, 118–19, 120 95–96
Alicia (relative): search for facility by, Barbara (relative): on employees, 127;
18–19; Valley Glen Home and, 33 on financial issues, 139, 140; on les-
ALW (Assisted Living Workgroup), 8, sons learned, 148; on residents with
11, 205 dementia, 145–46; on Sidney, 128
American Institute of Architects, 229n4 Barry (nursing director): on aging in
assessment of resident status: at Francis- place, 167; on residents, 123; on risk
can House, 47, 48; at Laurel Ridge, taking, 116

239
board and care, 8, 11, 215 and, 102, 114; social relations at,
business issues: at Franciscan House, 111–13; social space of, 105–6
46–49; overview of, 203–5. See also choice, constraints on: at Chesapeake,
cost issues 115–16, 119–20; at Franciscan
House, 40–41; health outcomes and,
caregiving: sibling relationships and, 81– 118–19, 161–62; at Laurel Ridge,
82; stresses of, 91 141–42; variations in, by operator,
case manager, involvement of: at Hun- 150. See also autonomy, boundaries
tington Inn, 67; in search for facility, of
18–19; at Valley Glen Home, 25–26 church, relationship of, with
Catherine, Dr. (resident): activities of, Chesapeake, 105
108–9; alcohol consumption by, 100, Clare (assistant director): on activity
118–19; description of, 98–99, 103; level, 108; as administrator, 123; on
dog of, 98, 102, 117–18; health of, aging in place, 167; on discharging
116; on independence, 113–14; redec- residents, 122; on fit, 122–23; on
oration of suite of, 101; Smith and, “home,” 100–101; on residents
102–3, 111–12; transition to demen- appropriate for facility, 105–6; on risk
tia care unit by, 117–19 agreements, 115; on transition to
Center for Medicare and Medicaid dementia unit, 117, 119
Services, 201, 229n2 Clinton, Mrs. (resident), 139, 140, 146
challenges of assisted living: advocacy co-housing communities, 209
and policy-oriented groups and, 211; Collaborative Studies of Long-Term
affordability, 73, 209–10; for consum- Care (CS-LTC) typology, 214
ers, 210–11; dynamic environment, community connections, 64–65, 84–85
212; dynamic policy and regulatory community fee, 87, 140, 176
context, 205–6; shifting consumer competition in market, 136
preferences and options, 209; success confidentiality issues, 215
of aging in place, 207; sustaining consumer: challenges for, 210–11; defi-
good-quality workforce, 208–9 nition of, 173, 179–80
change, categories of: finances, 65–67; consumer-driven model of care: cost
health, 67–71, 187; overview of, 186– issues and, 73; heterogeneity of facili-
87; public policies, 72–73; in resi- ties and, 196–97; limitations on, 172–
dents, 71–72; rules, 73–74 74; reticence to move and, 146–47;
change, social interpretation of, 187–89 shifting preferences and options in,
Chesapeake: activities at, 102, 108–9; 209
church subsidy at, 105; dementia unit Consumer Reports investigation, 3
at, 107; description of, 78; employees, continuing care retirement community,
109–10; exterior of, 104–5; family as 77
primary consumer for, 173–74, 179– core realities: business matters, 203–5;
80; fieldwork at, 222; food at, 153– crisis decision making, 199–200;
54; independence at, 113–15, 119–20; dynamic lives within dynamic envi-
interior of, 106–8; level of care at, ronments, 198–99; fit matters, 203;
105–6; lifestyle change and, 120–21; heterogeneity, 195–98; negotiation of
marketing of, 178; meal times at, aging in place, 200; people matter,
110–11; medication policy at, 114– 202–3; place matters, 201–2
15, 121; participant observation at, cost issues: as criteria for selection of
103–4; reputation of, 110; residents, facility, 175–76; departures and, 190–
105–6, 121–23, 157; risk agreements 91; at Laurel Ridge, 132–33, 136; for
at, 115–16; rules of, 109; smokers low- to moderate-income seniors, 73,

240 INDEX
 209–10; at Middlebury Manor, 87– elder care consultant, 177
88, 92–94; and operating a small employees: of Chesapeake, 109–10; of
business, 48–49; outliving money, Franciscan House, 49; of Huntington
139–40; overview of, 7, 181–82, 201– Inn, 59–60, 63; as intrusive, 157; of
2, 204; in transitions, 121–22 Laurel Ridge, 127–28, 144–45, 147;
CS-LTC (Collaborative Studies of Long- leadership and, 180–81; of Middle-
Term Care) typology, 214 bury Manor, 86, 88–92; power rela-
culture change movement, 201 tionships and, 95; social interpretation
cultures of care: operators, corporations, of change by, 188–89; sustaining
or owners and, 197–98; similarities good-quality, 208–9; of Valley Glen
and differences in, across settings, Home, 27–29. See also ethnicity of
165; size of setting and, 198–99; Val- staff; nursing staff; specific employees
ley Glen Home and, 34–35 entering assisted living: choosing setting,
cyclical pattern to residency, 146–47 174–77; as “consumer-driven,” 172–
74; decision to move, 170–72; gather-
data collection, 13 ing information prior to, 177–78. See
data management and analysis, 223–27 also movement to facility; search for
death, departures due to, 190 facility
decision making: event-driven, 199–200; ethnicity of residents: African American,
residents, families, and, 23–24 16, 19, 94, 131, 138; fit and, 174
decision to move, 170–72 ethnicity of staff: African, 16, 27, 35;
Della (relative): as caregiver, 126; as fic- African American, 78, 127–128; Fili-
tive kin, 138; on Laurel Ridge, 132; pino, 43; Indian, 21–22, 28
on Sidney, 143 ethnographic methods, 213, 218–23
dementia, residents with: diagnosis of, ethnographic study, xiii, 12–14, 214–15
100; early signs of, 99; fear of, 109; as everyday life in assisted living: at Fran-
hiding signs, 121; at Huntington Inn, ciscan House, 41–42, 45, 51–52;
70; at Laurel Ridge, 133, 142, 144– overview of, 149–51, 165–66; pur-
45, 147; living with, 111, 179. See pose of book and, 1–2
also wandering, problems with
dementia care unit: at Chesapeake, 107; falls, as precipitating event, 82–84, 100,
at Huntington Inn, 58; at Middlebury 126
Manor, 85–86; move to, 70–71; over- family: expectations of, by facility, 50–
view of, 158; Mrs. Smith and, 112; 51, 122; financial issues of, 140, 204;
transition to, 117–19 living with, 169–70; as primary con-
dining room: accommodations of likes sumer, 173–74; settling-in process
and dislikes in, 152–54; at Chesa- and, 183; sibling relationships and
peake, 110–11; common issues with, caregiving, 81–82. See also risk, will-
154–55; differences in, across settings, ingness of family to accept; specific
165; at Huntington Inn, 62, 63; at family members
Laurel Ridge, 130, 140–42; partici- fictive kinship, 138
pant observation in, 103–4 fieldwork, 218–23
Dolores (executive director): as adminis- fit: changes and, 187, 192–93; at Chesa-
trator, 127–28; on corporate office, peake, 122–23; as criteria for selection
135; on cost issues, 140; on rates, of facility, 174–75; with direct care
136; on residents, 147–48; on resi- staff, 180–81; at Huntington Inn, 56,
dents with dementia, 144–45; on set- 63; importance of, 203; with setting
tling-in period, 129 and other residents, 178–80; size of
duration of stay, 185–86 facility, cognitive impairment, and, 51

INDEX 241
focal case studies, extended, 221–22 room, 62, 63; employees, 59–60, 63;
food storage issues, 156 fieldwork at, 221–22; fit at, 56, 63;
Franciscan House: daily life at, 42, 45; food at, 153, 156; The Forum at, 53;
description of, 43–44; employees, 49; furnishings of, 57–58; hospice care at,
fieldwork at, 221; food at, 152–53; 71; level of care at, 58; Medicaid
furnishings at, 42; importance of waiver program and, 65–67, 191;
order at, 45–46; level of care at, 48; medications at, 62; pet program at,
medications at, 49; owner-operators 54; resident rooms, 59; residents,
of, 43; residents, 36–37, 44–45, 52; 63–64, 69–70, 71–72, 157–58; rules
rules, routines, and, 51; sale of, 52. at, 58, 60–62, 63, 73–74. See also
See also Maria; Opal Hill, Mr.; Karen

gatekeeper, informal, 223 independence, value of: at Chesapeake,

Gina (employee): description of, 109; on 113–15, 119–20; at Laurel Ridge,
“home,” 101–2 141–42; “resident” terminology and,
group home licensure category, 29–30. 137; safety issues and, 120, 159–62
See also Franciscan House; Valley individuality, boundaries of, 40–41
Glen Home information gathering process, 177–78
group living, 151–52, 156–59. See also institutional living: differences from,
institutional living 151–52; as lifestyle change, 120–21,
137; medical conditions and, 164. See
health outcomes, and choice, 118–19, also group living
161–62 intentional communities, 209
health services, 162–64 interviews, ethnographic, 219–21
Helen (resident): choice of, as focal case,
15–16; decline of, 17–18, 19–20; hair Joan (relative): as caregiver, 138; on les-
done for, 16, 35; health condition of, sons learned, 148
16–17; level of care of, 32–33 Joseph (director of nursing): care philos-
heterogeneity of facilities, 195–98 ophy of, 148; on cyclical pattern of
Hill, Mr. (administrator): as advocate, movement, 146; on Mrs. Perkins,
72–73; community connections of, 134; on residents, 133, 135–36, 144,
64–65; death of, 74, 181; description 145
of, 56–57; “difficult cases” and, 57; Joyce (relative): on convincing mother to
finances of residents and, 65, 66–67; move, 84; on cost issues, 87; on death
role of, 55–56, 59–60, 64, 197; set- of mother, 97; on health condition of
tling-in process and, 184; style of, 55; mother, 94; move of mother to private
on transition to dementia unit, 70–71 room, 86; as “paperwork person,”
Hoffman, Mrs. (resident), 79 81–82; risk accepted by, 90; stresses
“home”: atmosphere of, and fit, 174–75; on, 91
concepts of, 129, 157–59; food and,
155; making and calling assisted Karen (resident): community connec-
living, 100–102 tions and, 64–65; death of, 71, 74; on
Home and Community Based Services facility, 53–54; finances of, 65–67, 73;
Waiver. See Medicaid waiver program food and, 62–63; The Forum and, 53;
home health care, 4 health of, 66, 67–69; life story of, 54;
honorarium, 79, 216 on residents, 69–70; room of, 60
hospice care, 71 Klaassen, Paul and Teresa, 5
Huntington Inn: consultants available Koehler, Mrs. (resident): activities of,
to, 64, 65; dementia unit, 58; dining 86–87; choice, health outcome, and,

242 INDEX
 161–62; community connections of, routine of, 46; settling-in process and,
84–85; death of, 97; on decision to 184; stairs and, 44
move, 84; decline of, 94–95, 96–97; marketing: at Chesapeake, 178; fee-
description of, 75; health condition setting and, 176; fit and, 178, 180; at
of, 90–91, 171; life story of, 80–81; Laurel Ridge, 132, 178; at Middle-
move to private room, 85, 86; precipi- bury Manor, 87, 176; philosophy and,
tating fall of, 82–84 197, 201; sense of urgency and, 177;
tours, 84, 173, 178, 180
Laurel Ridge: aging in place at, 147; Maryland regulations: “awake overnight
choice, health outcomes, and, 161; staff” and, 27–28, 206; debate over,
description of, 124, 131–32; design 72–73; Department of Health and
of, 129–30; dining room, 130, 140– Mental Hygiene, 73; Franciscan House
42; employees, 127–28, 147; field- and, 48; funeral arrangements and,
work at, 222; food at, 154; goal of, 139; invocation of, 159–60; meals
147–48; independence at, 141–42; and, 155–56; medical status evalua-
interior of, 133–35; level of care at, tions and, 188; medications and, 62;
132; marketing of, 178; Medicaid nursing staff and, 72–73, 95–96, 206;
waiver program and, 191; medica- on training, 49; Valley Glen Home
tions at, 130, 137; participant obser- and, 30–31. See also level of care
vation at, 130–31; residents, 131, meals, Maryland regulations about,
133, 135–37, 157; social space of, 155–56. See also dining room
132–33. See also Dolores; Joseph; Sid- Medicaid, 201; and “spending down,”
ney, Mr. 66, 105, 132–33; subsidy program at
leadership: of facility, 180–81, 197–98; Valley Glen Home, 30
importance of, in shaping culture, Medicaid waiver program: description
34–35 of, 229n2; at Huntington Inn, 65–67,
level of care: at Chesapeake, 105–6; dif- 191; at Laurel Ridge, 191; use of,
ferences between residents at similar, 204
188; at Franciscan House, 48; hands- medical model of care: assisted living
on assistance and, 158; at Huntington and, 8; at Middlebury Manor, 161–
Inn, 58; at Laurel Ridge, 132; at Mid- 62; nursing homes and, 6; social
dlebury Manor, 77; selection of model of care and, 200
research sites and, 216–17; at Valley medications: at Chesapeake, 114–15,
Glen Home, 32–33, 34–35 121; delivery of, 162, 163; at Francis-
level of services, state limits on, 4 can House, 49; at Huntington Inn, 62;
liability insurance, 30, 49, 87 at Laurel Ridge, 130, 137; Maryland
lifestyle: group living, 151–52; institu- regulations and, 160; at Middlebury
tional living, 120–21, 137 Manor, 163; at Valley Glen Home,
listening to voices, ix 30–32
living space, 156–59 mental illness, residents with: complaints
location of facility, as criteria for about, 157; at Huntington Inn, 57,
selection, 175 58, 61, 160; at Valley Glen Home, 23
methods of study, 12
Maria (owner-operator): first meeting Middlebury Manor: choice, health out-
with, 36; food and, 152–53; as man- comes, and, 161–62; cost issues at,
ager, 43, 52; moral commitment of, 87–88, 92–94; dementia unit at, 85–
50–51; need for stability and, 40–41, 86; description of, 75, 76–78; employ-
47–48; Opal and, 39; on running ees, 86, 88–92; fieldwork at, 222;
business, 46–49; sense of order and food at, 153; level of care, 77; medi-

INDEX 243
Middlebury Manor (cont.) Perkins, Mrs. (resident): finances of,
cations at, 163; residents, 76, 78–80, 139–40; on residents with dementia,
89; shift in approach of, 91–93; sub- 145; roommates of, 134; Sidney and,
sidy program of, 92, 94 125, 128
models of assisted living, 217–18, 218 Peters, Mr. (resident): Catherine and,
money, outliving, 139–40 103, 111–12; departure of, 118; inde-
Mother (resident), 53, 70, 188–89 pendence of, 114, 115–16; personal-
movement between assisted living and ization of space by, 107
nursing home: as cyclical pattern, pets, 54, 98, 102, 117–18
146–47; Mr. Hill on, 70–71; Mrs. physicians: decision to move and, 170,
Jackson and, 93–94; Karen and, 68– 171–72, 177, Mr. Hill and, 64–65,
69; Mrs. Koehler and, 90–91; Medic- 164; medication management and, 62
aid waiver program and, 66; preva- Pierson, Mrs. (resident): on facility, 75;
lence of, 190 finances of, 93; health services pro-
movement from facility: causes of, 189– vided to, 163; Mrs. Koehler and,
90; constraints on, 140; consumer- 84–85; at mealtime, 79–80
driven model and, 172 “place,” concepts of, 167. See also aging
movement to facility: different paths for, in place
22–27; transition and settling in, 182– planning for care, 122
85. See also entering assisted living precipitating event, 170–71; falls as, 82–
84, 100, 126
naturally occurring retirement prison analogy, 137
communities, 209 professionals involved in decision to
needs, admission to assisted living and, 96 move, 171–72
negotiated risk agreement, 115–16 pseudonyms, use of, xiv
new model setting, definition of, 217 public policy, as dynamic, 72–73, 205–6
nursing homes: care in, as public entitle- purpose of study, 12–13
ment, 201; decline in use of, 4; desire
for alternatives to, 4–5, 169; dissatis- quality: of life, 51, 52, 199; of work-
faction with, 10–11; growth of, 10; force, 208
medical model of care and, 6; at Mid- quality of care: bottom line and, 197;
dlebury Manor, 76–77; resistance to departures and, 189; focus of study
move to, 96. See also movement and, 14; history of, 9–10; level of care
between assisted living and nursing and, 96; as person-centered, 183; uni-
home formity and, 196
nursing staff: debate over requirement quasifamilial relationships, 31–32, 35,
for, 72–73, 95–96, 206; description 202
of, 164. See also specific staff
race. See ethnicity of residents; ethnicity
Opal (resident): on boredom, 41–42, of staff
51–52; choice of, as focal case, 37; Rani (owner-operator): on decision
decline of, 36–37; description of, making, 23–24; food and, 152; lead-
37–38; first meeting with, 36; life ership of, 181; on level of care, 32–33;
story of, 38–41 life story of, 21–22; as manager, 19,
Oregon, regulations in, 5, 6 27–29, 31–32, 33–34; on medications
and health care, 30–32; settling-in
participant observation method: at process and, 23, 24–25, 26, 183–84;
Chesapeake, 103–4; at Laurel Ridge, on state regulations, 30–31
130–31; overview of, 13, 219 referrals, 177–78

244 INDEX
regulatory issues, 201–2, 205–6. See location and, 175; Valley Glen Home,
also Maryland regulations; state 18–19, 24; waiting lists and, 176–77
regulations services provided, 149, 162–64, 193. See
reimbursement rates, and state subsidies, also activities
7 settling-in process: family and, 183; at
relatives, living with, 169–70 Franciscan House, 184; at Huntington
religion: fit and, 174; food and, 152; at Inn, 184; at Laurel Ridge, 128–29; at
Franciscan House, 42, 43, 45, 49, 50, Valley Glen Home, 23, 24–25, 26,
52; at Laurel Ridge, 135; at Middle- 183–84. See also transition time
bury Manor, 135 Shalala, Donna, 8
research, productive lines for future, 227 sibling relationships, and caregiving,
research design, 213–15 81–82
research sites, selection of, 215–18 Sidney, Mr. (resident): activities and,
Resident Council at Middlebury Manor, 125; approach to life by, 143; on con-
86, 87 flict in dining room, 142; description
residents: characteristics of, 98; of Ches- of, 124, 125–26; on facility, 126–27,
apeake, 105–6, 121–23, 157; duration 129; family and fictive kin of, 138;
of stay of, 185–86; as facilitating set- Mrs. Perkins and, 134; and precipitat-
tling-in process, 184; of Franciscan ing event, 126; on residents, 127, 136;
House, 36–37, 44–45, 52; health con- settling in period for, 128–29
dition of, 16–17, 89, 96, 207; of Hun- size of setting, 51, 198–99
tington Inn, 63–64, 69–70, 71–72, small setting, definition of, 217
157–58; impairments of, 9; as intru- Smith, Dr. (resident): Catherine and,
sive, 157–58; of Laurel Ridge, 131, 102–3, 111–12, 118; on indepen-
133, 135–37, 157; of Middlebury dence, 113; life story of, 112–13; pos-
Manor, 76, 78–80, 89; as role models, sessions of, 107; scooter of, 114; on
148; terms used to refer to, 136–37; smoking policy, 114, 162
tolerance for, 158; typical cohort of, smoking policy, 102, 114, 162
37; of Valley Glen Home, 22–27. See social model of care: description of, 5–7;
also dementia, residents with; specific health services and, 163; importance
residents of, 201; interpretations of, 161
risk, definitions of, 31 social space: Chesapeake, 105–6; Laurel
risk, willingness of family to accept: at Ridge, 132–33
Chesapeake, 115–16; at Middlebury “spend down” to Medicaid-eligible
Manor, 90; safety and, 120, 180; at income level: Chesapeake and, 105;
Valley Glen Home, 26–27 Huntington Inn and, 66; Laurel Ridge
rules: at Franciscan House, 51; at Hun- and, 132–33
tington Inn, 58, 60–62, 61, 63, 73–74; Spousal Impoverishment Law, 82
interpretation of, 188–89; at Middle- staffing challenges: of future, 208–9; at
bury Manor, 89, 96–97 Valley Glen Home, 27, 29
state regulations: criticism of, 9; cultures
safety, constraints on other values from, of care and, 34; as dynamic, 205–6;
120, 159–62, 180. See also risk, will- growing interest in, 3; in Oregon, 5,
ingness of family to accept 6; social model of care and, 6–7. See
search for facility: Chesapeake, 99–100, also Maryland regulations
110; cost and, 175–76; as event- subsidy program: at Chesapeake, 105; at
driven, 199–200; fit and, 174–75, Laurel Ridge, 132, 191; at Middle-
178–80; Huntington Inn, 55; informa- bury Manor, 92, 94; of state, 7; at
tion gathering process and, 177–78; Valley Glen Home, 30

INDEX 245
Susan (relative): drinking by mother Valley Glen Home: classification of, 29–
and, 118–19; on planning for moth- 30; description of, 20–21; employees,
er’s care, 122; redecoration of suite of 27–29; fieldwork at, 221; food at,
mother and, 101; search for facility 152; level of care and, 32–33, 34–35;
by, 99–100, 110; transition of mother medications at, 30–32; residents, 22–
to dementia unit and, 117–18, 119 27; settling in at, 23, 24–25, 26, 183–
84; state regulations and, 30–31. See
Tammy (relative): search for facility by, also Helen; Rani
24; on willingness to accept risk, Virginia, regulations in, 5
26–27 voices, and listening, ix
traditional setting, definition of, 217
training for employees: at Franciscan waiting lists, 176–77
House, 49; at Valley Glen Home, wandering, problems with: at Hunting-
28–29 ton Inn, 61; at Laurel Ridge, 133,
transition time: at Chesapeake, 101–2; 145; at Middlebury Manor, 85–86; at
individual variations in, 182–85; at Valley Glen Home, 23, 26–27
Laurel Ridge, 129. See also settling-in Wilson, Keren Brown, 5, 9
process workforce, sustaining good-quality,
trust, gaining for research project, 223 208–9

246 INDEX