Eldercare 101 A Practical Guide to Later Life Planning, Care,

and Wellbeing

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 Lawrence Hansen, Benjamin B. Hellickson, Joyce Sjoberg, Sara K. Yen,
and
Ruth Matinko-Wald.
Description: Lanham : Rowman & Littlefield, [2016]
Identifiers: LCCN 2016006182 (print) | LCCN 2016013469 (ebook) | ISBN
9781442265462 (cloth : alk. paper) | ISBN 9781442265479 (Electronic)
Subjects: LCSH: Older people—Care. | Caregivers. | Older people—Health
and
hygiene. | Older people—Finance, Personal. | Older people—
Religious life.
Classification: LCC HV1451 .S195 2016 (print) | LCC HV1451 (ebook) |
DDC
362.6/3—dc23
LC record available at http://lccn.loc.gov/2016006182
The paper used in this publication meets the minimum requirements of
American National Standard for Information Sciences—Permanence of
Paper
for Printed Library Materials, ANSI/NISO Z39.48-1992.
Printed in the United States of America
This guide is dedicated to my mom,
Dorothy Marie,
and her loving family,
with the blessing that all who use it
will know they are enough.

Contents
Preface ix
Acknowledgments xiii
Introduction 1
1 LEGAL PILLAR OF AGING WELLBEING 7
Legal Ease
12
Sara K. Yen, JD, LLM
2 FINANCIAL PILLARS OF AGING WELLBEING 29
Money Matters
34
Theresa Giddings, CPA, CFP®
Getting Organized
35
Paying the Bills
51
Insurance 59
Getting Help with Financial Planning and Advice
66
3 LIVING ENVIRONMENT PILLAR OF WELLBEING 73
Living Environment Options
77
Susan Cain McCarty, MAIS, CSA
Aging at Home
77
The Choice
78
The In-Home Helpers
89
The Maintenance
98
Living Options with Built-in Support
103
vii

viii
Contents
4 SOCIAL PILLAR OF AGING WELLBEING 117
Social Considerations
122
Susan Cain McCarty, MAIS, CSA
Life Re-Imagined
122
Transportation Issues
129
Managing a Move
134
Protecting Your Elder
142
5 MEDICAL PILLAR OF AGING WELLBEING 149
Navigating the Medical Maze
154
Joyce Sjoberg, MA, RN, BSN, CMC
An Ounce of Prevention
155
Time for Medical Support
164
Medical Insurance
180
Geriatric Dentistry / Benjamin B. Hellickson, DDS 184
The Aging Body
191
Elders and the World of Brain Disease
201
What to Expect at the End
207
6 SPIRITUAL PILLAR OF AGING WELLBEING 219
Spirituality and the End(s) of Life: Considerations for the
Cared-For and Their Care-Givers
224
Rev. Lawrence Hansen, BCC/CFHPC, CT
Living Until the End
224
Dealing with the Dead
234
Death Dialogue
246
The Rest Is . . . Spiritual Practices and Poems
251
Glossary 267
Notes 279
Bibliography 283
Index 287
Meet the Authors
293
Preface
This is, without a doubt, a vulnerable time for you as you plan or
manage the
care of an elder. I know. I have been there. I started managing my mother’s
care when crisis hit; she had a major fall related to a diagnosis of
Alzheimer’s
disease. I felt numb, hoping someone would hand me a manual, a road map
—
or simply hold my hand—through this uncharted territory.
Once diagnosed, Mom agreed to move from Seattle to Portland to live near
me in a memory care residence. Even with the best facility staff and support
of my large family and many friends, I was astonished at all I needed to
know
and realized I didn’t even know all the right questions to ask. Slowly, I pain-
fully pieced together information through endless hours of research. I was
riddled with fear, knowing I did not know what I did not know. This made
me
vulnerable and prone to exhaustion, mistakes, higher costs of care, lost time,
and heartache. Oh, did I mention guilt?
Each evening in the early days of her transition to residential care, I held
my mother as she cried during states of “sundowners.” And I cried with her.
I was her youngest of five children. No longer would she pamper and care
for me. Gone were the days when this amazing woman would tell me, “Ev-
erything is going to be OK.”
This period of caring for my mom came as I was finishing my education
and thesis in business gerontology. You would think a gerontologist would
have all the answers for the care planning and management of an elder, but
no, that’s not part of our training. However, I didn’t need a degree to tell me
there were major gaps in eldercare management, and to hope there had to be
a better way to navigate the journey.
For six months, I cared for my mother during the day and worked on my
graduate thesis at night. Grateful that my amazing family from all corners of
the United States were supportive and that my daughter, in her twenties, was
ix

x
Preface
strong and independent, I was still constantly mystified as to how to juggle
the responsibilities. I had exceptional professionals supporting me and
family
who helped when I asked. But, still, I faced a seemingly never-
ending path of
unknowns, crises, and tears. I kept wondering, “How long will this go on?”
I was devastated to see my mom suffer and to think this was how we would
spend her final days (or would it be years?) together.
In the final week of my mother’s life, she was doing well emotionally. We
had found a rhythm to our days, and her ability to be present to joy was
begin-
ning to expand as her memory slipped further away. She still struggled with
scary hallucinations, sundowners, and accelerated decline of memory
caused
by a change in residence, but we found and cherished grace-filled moments
of sharing memories and funny stories. And we were surrounded by a
loving,
caring community.
Mom was always that “silver lining” kind of woman, filled with faith and
with unconditional love for her family. At the beginning of her last week
with
us, I arrived late one day to the residence home because a dear friend had
passed away that morning. My tardiness upset her, and I sensed something
had changed. After we went for a walk, she asked if I would stay with her
while she took a nap, saying she did not think her pneumonia medicine was
working. She fell asleep but within fifteen minutes began to have difficulty
breathing. She was under hospice care, so the nurse began comfort measures
to help her breathe, hoping the antibiotics would kick in.
Mom declined rapidly that evening. I called my siblings to let them know
the end seemed near, and I slept that night on the floor next to her bed. As I
listened to her labored breathing, I wondered if I were doing enough. What
more would she want of me? She had signed a Physician Orders for Life-
Sustaining Treatment (POLST) form stating not to take intervention mea-
sures. My tears flowed for all the loss the day had brought. I prayed for God
to take my mom swiftly and peacefully so she would not have to suffer any
longer if she could not have peace in this world. This had been my prayer
most days over the six months, but it usually only made me feel worse,
guilty,
and that I was not doing enough.
My mother passed a few days later, peacefully, surrounded by her children,
my daughter and husband, and a great granddaughter. She was accompanied
to her new life on the wings of the prayers of her thirty-
four immediate family
members, her Carmelite community, and all those who loved her. In her
final
hours, she left us with a few fleeting moments of consciousness during
which
she gifted us with a breathtaking smile. At that moment, she was partly in
this
world and partly in the other. The veil was thin between us and where she
was
going. In this smile, she shared her joy to be going and her
unconditional love

Preface xi
for us. All her life she had taught us how to live. Now she also taught us
how
to die. And she showed us that we were enough and had always been
enough.
Two weeks later, I graduated with a master’s degree in gerontology. While
this was a transformational moment, my grief and my joy commingled with
exhaustion. In the following months, the thought burning in my soul, “There
has to be a better way,” gave rise to a new direction for my postgraduate
life.
I would become an aging life care manager (ALCM), formerly known as a
geriatric care manager (GCM). I had stumbled upon the profession through
a teacher during my graduate studies. ALCMs know the magic formulas to
assist you when you are in an eldercare crisis. They enable you to catch
your
breath and continue to walk forward on the path, together with your elder,
under their wise guidance.
Why hadn’t I heard about ALCMs when my mom was passing? Why did
my personal support group and other caregivers in my foxhole of caregiving
have no idea these professionals or their services existed and recommend
them? Have you heard of ALCMs (or GCMs)? While I learned about them
too late to aid me with my mom, I was, nonetheless, sparked to explore how
to make a difference in others’ caregiving journeys and, two years later, be-
came certified as an ALCM.
Over the years of serving my ALCM clients, I have helped with consulta-
tions, crisis management, care planning, care management, and advocacy.
And I want you to have the benefit of my knowledge and skills and that of
the
experts who surround my practice. This is why I created Eldercare 101. All
the same tools I use for
my private clients are in this ready resource. Granted,
nothing can replace the skills of hiring an ALCM for private consultation
and support, but the basic strategies and solutions in this guide have proven
results. They will enable you to successfully help your elder to navigate the
Six Pillars of Aging Wellbeing.™ Plus, my hope is that Eldercare 101 will
empower you to thrive, rather than just survive, during your caregiving jour-
ney. And I pray that what you learn through Eldercare 101 will encourage
you to fully embrace the blessings you will receive as you give of yourself
to another.

Acknowledgments
My deepest thanks go to those who have supported my vision of greater
presence for the care and respect of our elders by providing easy access to
caregivers for care management information and tools for caregivers. This is
sacred work to which we have dedicated ourselves.
To the special people around my table. Jaime, who has taught me to keep
walking, one step at a time. You are truly a man of grace and my best friend.
My beautiful daughter, Alex Marie, with your tenacious spirit and gentle
heart, thank you for walking this path with me. Dorothy and Cy’s pride and
joy: Kay, Larry and Robin, Neil and Jill, Lance and Yolanda; thank you and
your families for teaching me what it is to be family. I am grateful for each
of you every day.
To my brilliant collaborators who stepped into my vision with trust and
few questions as to where the journey would lead. Susan Cain McCarty, for
your partnership in the trenches, creating this better way. Ruthie Matinko-
Wald, for your tireless editing and friendly “border collie” nips that made
this book come together. To the “wisdom authors” of this book who stepped
into the vision of providing a more honoring, empowering, and intentional
aging experience for our elders and their caregivers: Susan Cain McCarty,
Theresa Giddings, Rev. Larry Hansen, Dr. Ben Hellickson, Joyce Sjoberg,
and Sara Yen. Special thanks also go to our generous contributors—
especially Donald Altman, Sr. Mary Jo Chaves, Bill Gottlieb, and Kym
Croft Miller—for your words of wisdom and encouragement, as well as to
our peer editors who answered the call to ensure we had all the dangling
threads tightly woven: Susan Cain McCarty, Ruth Cohen, Peggy Kessinger,
and Dr. Kathy Masarie.
xiii

xiv
Acknowledgments
To those treasures in my life I call friends. Each of you is so dear to me.
Thank you also to the following for being an integral part of my own care-
giving journey with your life-giving support: Ken, Michael, Sadhana, Poh,
Mary, Kym, Marilyn, Sr. Mary Jo, Andrea, Ruth, Pam, Jean, Jim, Francisco,
Sr. Cecilia, the Sisters of the Santa Clara Carmelites, and the amazing care-
givers at Maryville Memory Care Home. It takes a village.

Introduction
Compassion brings us to a stop,
and for a moment we rise above ourselves.
—Mason Cooley
MARY JO’S FIRESIDE CHAT
So the Journey Begins
Caring for an elder is sacred work. By your commitment as caregiver to an
elder person, you participate actively in a good-bye process, acknowledging
that life in the physical plane has a natural end. You are that vital companion
to another on a one-way journey. And it is you who can ensure that your el-
der’s final years, months, or days
are filled with dignity, respect, compassion,
meaning, and legacy.
To support you as you care for an elder person, I am thrilled to share with
you Eldercare 101. You’ll find here essential information you need to know.
Everything you learn will translate into empowering your elder to live pur-
posefully until the end of his or her natural life and to be valued for his or
her important wisdom and gifts. You, ultimately, will be rewarded the gift of
saying good-bye in the best way possible.
Our uniquely comprehensive Eldercare 101 is based on an integrated ap-
proach to elder caregiving and is structured upon our Six Pillars of Aging
Wellbeing™ process. The six pillars include legal, financial, living environ-
ment, social, medical, and spiritual. Full of resources, tips, and management
tools, it is a “one-stop shop” for the best and most compassionate advice by
experts for common eldercare situations. Used mindfully, Eldercare 101 can
1

2
Introduction
be instrumental in guiding you through the maze of decisions and challenges

elders inevitably face.

While many of the twists and turns of eldercare are similar across America,
each caregiving situation is unique. You may be planning to help or are al-
ready providing care for someone you love deeply. Or you may be
caring for
someone you are not particularly fond of. You may live in a different city or
state from the elder under your care. Is that person a parent, spouse, friend,
uncle, or sister? You may be part of a caregiving team together with your
siblings, juggling the complex coordination of everyone’s opinions. You
also
may be struggling with less-than-desirable family dynamics or legal issues.
Does your particular elder have serious or
mild medical complications? Does
he or she have cognitive issues? Are you dealing with homecare providers,
searching for aging life care team members, or managing the elder’s living
environment needs?
Chances are, while caring for your elder, you also are trying to maintain
your own home, raise children, nurture your relationships with other fam-
ily members and friends, stay healthy yourself, and perhaps even sustain a
professional career. These demands can be undermined by the unpredictable
needs of elder caregiving, the time-consuming research it requires, and the
crisis that is a constant companion during eldercare.
Whatever your situation, having ready access to the right information will
be your greatest asset for effective eldercare planning and crisis manage-
ment. While caring for my own mom, I carried a binder filled with notes,
forms, medical reports, and the like with me at all times. My grab-and-go
binder served as a virtual office, file system, and life vault, providing me
with the tools I needed at a moment’s notice for the coordination of profes-
sionals involved in my mom’s care. In talking to other caregivers, I learned
we all were “reinventing the wheel” of how others had made their
caregiving
journey easier, better, more informed. We often bounced our way through
the
maze, hoping to find what we needed for a specific setback or an
unexpected
crossroad. We commiserated that we felt like deer in headlights with no one
place to turn.
Now there is. Eldercare 101 is that one place for all caregivers and their
elders.
The questions you have and the new things you need to learn about el-
dercare can be overwhelming. Add to that the reality that another’s life and
resources depend on your getting this right—and guilt, fear, and anxiety can
ensue. In fact, guilt could be a nighttime gremlin who dances in your
dreams.
But there is no room for perfection in caregiving. Humans are involved and
the situations are complex, which means caregiving gets messy. Yes,
you will

Introduction 3
make mistakes, but, rest assured: All that is asked of you is that you do your
best. You are enough.
As you sort out the complex role of caregiver and embark on your care-
giving journey, remember to be gentle with yourself. We suggest you take
your first steps with good intention and simply be present to the process.
There undoubtedly will be periods of grief for the expected loss of your role
as son, daughter, spouse, friend, or partner. To companion with you through
your emotions, we have built into Eldercare 101 guidance and resources
to enable you to find calm in the chaos as well as moments of peace and
enjoyment.
We know you already possess the heart to meet the life goals of quality,
independence, and dignity of your elder. Eldercare 101 backs up your heart
with research-based, expert advice that will shed light along the caregiving
tunnel, giving you more clarity and confidence. Buoyed by that confidence,
you will take a “do-it-yourself” path and customize your approach to care
planning to fit your specific needs and those of your elder.
So, let’s get started. As you will soon discover, the first order of busi-
ness is to surround your elder (and yourself) with support. Our aging life
care team diagram on the next page provides a quick snapshot of those you
might have on your team. Also, the forms listed next are free to download
at https://rowman.com/ISBN/9781442265462 and will help you compile
your own “grab-and-go” binder for your elder. Take advantage of the many
available resources.
Then, serving as your personal aging life care manager, I will lead you
through a discussion with six valued professionals. These experts in the Six
Pillars of Aging Wellbeing™ will share their experience and provide you
with a best-practices framework for the questions, topics, and common situ-
ations I see as a care manager. These treasured care management insights
ultimately will save you time, money, and heartache. The experts and I also
offer you tips, Internet links, and sound care management solutions you can
depend on—empowering you to ask the right questions of and speak with
knowledge to your own aging life care team of professionals.
Be well,
Mary Jo
Daughter, Mom, Wife, Friend, Gerontologist, Aging Life Care Manager, and
Spiritual Director
Introduction 5
FREE DOWNLOADABLE FORMS
Available for download at https://rowman.com/ISBN/9781442265462
Aging Life Care Team
Legal Pillar of Aging Wellbeing
Potential Elder Law or Estate Planning Attorneys
Financial Pillar of Aging Wellbeing
Financial Aging Life Care Team
Collectibles Inventory
Strong Box Inventory
Retirement Income: Salaries, Pensions, and Benefits
Individual Retirement Accounts: IRA, Roth IRA, 401(k), and 403(b)
Checking and Savings Accounts
Investments
Credit and Debit Card Accounts
Recurring Payments
Debt Documentation
Cost of Care Worksheet
Documentation of Insurances
Living Environment Pillar of Aging Wellbeing
Potential In-Home Helpers
Potential Adult Foster Care Homes
Potential CCRCs
Potential Assisted Living Facilities
Potential Memory Care Facilities
My Personal Care Team
My Home Team
Social Pillar of Aging Wellbeing
My Village
Potential Adult Day Care Programs
My Possible Rides
My Move Mavens
Medical Pillar of Aging Wellbeing
Medical Aging Life Care Team
Daily Exercise Log
6
Introduction
Potential Healthcare Providers
Symptom Tracker
My Medications
Keeping Up with Checkups and Vaccines
Diagnosis List
Record of Medical Visits
Transition Gurus
Spiritual Pillar of Aging Wellbeing
After-Life Considerations for LGBT Elders
After-Life Decision Guide
Planning a Celebration of Life
Writing My Own Obituary
Caregiver Online Communities for Support
AARP Posting Board for Caregivers: http://community.aarp.org/t5/Care
giving/bd-p/bf41?intcmp=AE-HF-IL-COMM-CG
Caregiver Community Sharing Forum: http://eldercare.infopop.cc/6/ubb.x
Caregiver Support Forum: http://www.agingcare.com/Caregiver-Forum
Nurture Yourself: http://www.aarp.org/home-family/caregiving/info-2014/
ways-for-caregivers-to-nurture-themselves.html?intcmp=AE-HF-RELBOX

LEGAL PILLAR OF
AGING WELLBEING
In everything, do to others as you would have them do to you;
for this is the essence of the law and the prophets.
—Matthew 7:12
7

Chapter One
MARY JO’S FIRESIDE CHAT
Why Is the Legal Pillar of Aging Wellbeing the First Consideration
of Care Management?
My experience as an aging life care manager (ACLM) has proven time and
again that the “legal pillar of aging wellbeing” is the best place to start when
someone embarks on a caregiving journey with an elder. Legal documents
are what empower you to provide the best care and support for your elder.
They allow you to understand what your elder wants from you and what she
wishes for her end of life.
Caregiving is important and loving work you will want to get right. As you
shepherd an elder through the aging experience, you are accompanying her
through her final transition. To “get it right” and ensure you help your elder
make the best decisions, I highly recommend establishing a
relationship with
and working through an elder attorney or estate planning attorney, whenever
finances permit. Although many do-it-yourself types of legal forms exist, el-
der lawyers specialize in the complicated issues of advanced aging
involving
Medicare and Medicaid, estate planning, inheritance, and more.
Initially in the elder aging process, your elder may need only basic legal
documents including a will, advance healthcare directive (advance
directive),
and durable power of attorney (DPOA). Having a professional craft these
documents is a good first step toward forging a relationship with a particular
attorney. Down the road, when issues arise that require urgent legal counsel,
your attorney, as an “aging life care team” member, will be in place to aid
your
elder—and you, as you begin to take over your elder’s legal matters. Over
time,
the elder lawyer may become a trusted advisor regarding major decisions
such
9

10
Chapter One
as setting up private in-home care, tax considerations, and other legally
sensi-
tive topics, or handling issues of concern such as scamming.
In addition to dealing with legal matters that all elders encounter, another
area in which elder lawyers can play a major role is mediating
family dynam-
ics. For example, a grown child may not like her elder, or vice versa; an
elder