Multiple Sclerosis A Guide for Families, Third Edition - 3rd

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Contents

Foreword by Nancy J. Holland

1 When MS Joins the Family
Rosalind Kalb . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1
2 Emotional and Cognitive Issues
Nicholas LaRocca . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11
3 The Family’s Relationship with the Physician and the
Healthcare Team
Jack Burks . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 35
4 Sexuality and Intimacy in Multiple Scleroris
Frederick Foley . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 53
5 Fertility, Pregnancy, and Childbirth
Kathy Birk and Barbara Giesser . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 81
6 Parenting Issues
Peggy Crawford and Deborah Miller ................................ 93

7 Parenting a Child with MS

Rosalind Kalb and Lauren Krupp . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 111
8 Adults with MS and Their Parents
Rosalind Kalb and Faith Seidman . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 137
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9 The Caregiving Relationship

Deborah Miller and Peggy Crawford . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 149
10 Planning Wisely for Possible Care Needs
Dorothy Northrop . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 169
11 General Health and Well-Being
Kathy Birk and Elizabeth H. Morrison . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 181
12 Life Planning: Financial and Legal Considerations
for Families Living with MS
Laura D. Cooper . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 195
13 Supportive Resources for Families
Nancy Holland, Kimberly Koch, and Deborah Hertz . . . . . . . . . . . . . . . . . 225
Appendix A: Additional Readings . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 235
Appendix B: Recommended Resources . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 245
Appendix C: Professional Biographies of the Authors . . . . . . . . . . . . . . . . . . . . . 259
Index . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 271

vi Contents
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Fo reword

Why is a guide for families needed?

A ʟtʜouɢʜ maɴʏ adva ɴ c e s have been made in the under-
standing and treatment of multiple sclerosis (MS) since 1998,
when the first edition of this book was publ i s h e d , the challenges
for families living with MS continue to be significant. The con-
tributors to the new edition remain committed to providing fa m-
ily members with the info rm ation they need to live comfo rt ably
with the disease and with each other.
Multiple sclerosis is typically diagnosed in young adulthood—
the time in life when decisions are being made about marriage,
children, and care e r s. F rom diagnosis onwa r d , the disease can
affect the life cycle of the entire family, compounding and con-
fusing the normal transitions and stresses of eve ry d ay living. Life
challenges, including marriage, child reari n g,job changes, re t i re-
ment, and the death of elderly parents, are often complicated by
the presence of MS.
What happens when a promising career is detoure d , resulting
in the loss of college funds for the ch i l d ren and retirement income
for parents? How does MS affect a person’s ability to be the kind
of parent he or she always wanted to be? How do family mem-
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bers feel when their roles in the household begin to shift in

response to the demands of the illness? How do older couples
that are pre p a ring for a long-planned and well-deserved re t i re-
ment deal with an adult child who re t u rns home with a signifi-
cant disability? How can a family plan for a future that has been
redefined by an unpredictable disease? Multiple Sclero s i s :A Guide
for Families has been written to address these important questions.

How will this book be helpful

for families living with MS?
F amɪʟɪes expeʀɪeɴcɪɴɢ MS often find themselves in uncharted
territory. Prior patterns of interacting with one another may
undergo major changes.The disease may require shifts in roles and
responsibilities that have a significant impact on the lives of all
family members. Guilt, anger, sadness, and a sense of burden can
become part of the family fabric and cre ate barriers to intimacy,
joy, grow t h , and family unity.This book can help families nego-
tiate their way through these barriers or—even better—find ways
to prevent them from developing. This book enables families to
move toward a re s t o r ation of balance, humor, productivity, and
family solidarity. It can lead the way for families, helping them to
understand the potential impact of MS on family life, stre n g t h e n-
ing coping strategies, and planning more effectively for the uncer-
tain tomorrow s.
This book helps to provide a feeling of connection for families
living with this chronic and unpre d i c t able disease. It acknow l-
edges the confusion and distress that can be experienced by fa m-
i ly members and conveys the message that your fa m i ly is not
alone. Hearing this message is an important first step in taking
action to get the help and support eve ryone needs to live com-
fo rt ably with the challenges of MS.The information in these chap-
ters is communicated by well-known experts in each area. Difficult
but crucial topics, including cognitive and emotional changes,
sexuality, parent-childre l at i o n s h i p s , care giving challenges, and
the financial and legal aspects of sound life planning, are addressed
directly and comprehensively. One goal of the guide is to encour-
age family members to discuss the disease more openly in order

viii Fo r e w o r d
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to explore and clarify their individual perspectives on the expe-

rience of MS.
The third edition of Multiple Sclero s i s : A Guide for Families
offers new chapters that address the topics of potential long-term
care needs, and the challenges of parenting a child or teen with
MS. Other chapters have been expanded and updated to cre ate a
dynamic and extre m e ly useful and usable book for families liv-
ing with MS and the pro fessionals who assist them.
Nancy J. Holland, R.N., Ed.D.

Fo re wo r d ix
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1.
When MS Joins
the Family
Rosalind Kalb, Ph.D.

T ʜe va st majoʀɪtʏ of people who have multiple sclero s i s

(MS) are diagnosed between the ages of 20 and 50 ye a r s.The dis-
ease thus affects people in their most active ye a r s : young adults
re a dying themselves to leave home in pursuit of academic, vo c a-
tional, or social goals; men and women in the process of launch-
ing careers and families of their own; and those in middle age
who are enjoying their pro d u c t i ve years and planning for their
retirements. In each of these age groups, the diagnosis of a chronic
and unpredictable disease has significant impact, not only on the
individual who receives the diagnosis of MS, but also on the fa m-
ily members and loved ones whose lives are interwoven with that
person (see Chapters 6, 8, and 9).

What is it about MS that makes its

impact on the family so gre at?

MS is a chronic disease
A ʟtʜouɢʜ we ɴow h ave several tre atments designed to mod-
ify the course of the disease, we still have no cure for MS. Since
the illness has little impact on life expectancy, the person diag-
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nosed with MS will like ly be living and coping with its effects
for many ye a r s. MS has often been compared to the “uninvited
guest” who arrives at the door one day, complete with baggage,
and never goes home.The guest moves into the household, using
up space in eve ry room of the house, and taking part in eve ry
family activity.

MS is unpredictable
N o oɴe caɴ predict with any certainty how a person with MS
will fa re several years down the ro a d . While it causes seve re or
incap a c i t ating disability for re l atively few, it cre ates a bewildering
question mark for all. Individuals with MS and their family mem-
bers may have difficulty anticipating what the next day or week
will bring, let alone the more distant future.As a result, the estab-
lished rhythms of daily life can be seve rely disrupted as family
members attempt to respond to the demands of the illness.
Planning becomes diffi c u l t , creating an ongoing need for flexi-
bility and cre at i v i t y.
MS is unpre d i c t able not only in the course it fo l l ows, but also
in the kinds of symptoms it may cause. No two people have MS
in exactly the same way. Since the disease can affect almost any sys-
tem in the body, people feel vulnerable both phy s i c a l ly and psy-
chologically. In addition to the more visible symptoms (e.g.,
walking difficulties or imbalance), MS can cause less obv i o u s
symptoms (overwhelming fat i g u e, bladder and bowel problems,
changes in sexual function, visual impairment, and sensory
changes), as well as intellectual and emotional changes. “ W h at ’s
next?” is the question commonly asked by individuals and fa m-
ilies living with MS. U n fo rt u n ately, it is difficult to predict the
answer.

MS is expensive
I ʟʟɴess of aɴʏ kind can be expensive, and a ch ronic disease
t h at appears during a person’s most productive years can have
major financial consequences for the entire family. In addition to

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this more obvious cost in dollars and cents, t h e re is a significant

drain on other family resources, including time, energy, and emo-
tions. Families living with MS face the daily challenge of trying
to distri bute these va l u able resources eve n ly among all fa m i ly
members. MS should not be allowed to sap any more of these
resources than it absolutely needs; otherwise, the needs of other
family members may go unmet (see Chapter 11).

Emotions
L ɪvɪɴɢ wɪtʜ MS poses an ongoing challenge to the emotional
equilibrium of a family (see Chapter 2). Both the person who
has MS and family members experience feelings of loss and grief
with each new symptom and each change in functional ability.
Each pro g ression in the illness re q u i res the entire family to adjust
to the loss and re d e fine themselves accordingly. “Who am I now
that I can no longer do some of those things that helped to define
me as me?” “Who are we as a couple now that our partnership
is being redefined by MS?” “Who are we as a family now that our
roles have changed and our re l ationships to each other and to the
c o m munity are changing?”
Along with grief comes anxiety over being unable to pre d i c t
what the future will bring.While all people live with uncertainty,
most are not so awa re of it on a day-to-day basis. As adults, we
tend to take for granted our ability to plan and look fo r ward to
eve n t s. Families living with MS sometimes feel overwhelmed
with “ w h at if’s.”
Anger can also become a part of life with MS. When uncer-
tainty, change, and loss thre aten the family’s sense of order and
control, individual family members may feel increasing re s e n t-
ment—toward the MS, toward one another as gradual shifts occur
in their roles and re l at i o n s h i p s , and even toward themselves for
being unable to do the things they want or need to do.
The ebb and flow of these emotions can take a toll on even the
most secure and stable fa m i l i e s. Learning to re c o g n i z e, c o m mu-
n i c at e, and share these feelings with one another helps fa m i ly
members to cope with them more comfortably.

When MS Joins the Fa m i ly 3

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Energy
T ʜe eɴeʀɢʏ dʀaɪɴ on families living with MS comes both fro m
the effo rt re q u i red to do things diffe rently and from the emo-
tions that surround these adjustments. Families who have expe-
rienced changes in their daily routines because of MS say that
“nothing is easy or automatic any more . . . eve rything takes so
mu ch effo rt .” Part of this effort involves finding alternative ways
to get things done; p a rt of it involves dealing with the feelings that
each person has about having to incorporate these changes into
daily life.
Time. MS tends to slow people down.The various physical and
psychological symptoms of the disease interfe re with the activi-
ties not only of the person who has the illness, but also of any-
one in the household who shares those activities.Time is a valuable
commodity for today’s busy families, and the need to slow the
pace, postpone activities, or rearrange schedules can produce a
new kind of stress for all concerned.

Challenges to Family Coping

F amɪʟɪes effoʀts to cope with the intrusion of MS into their
lives are challenged not only by the complexities of the disease,
but also by the complexities of the families themselves. What is
it about families that complicates the coping process?

Individual Needs and Coping Styles

T ʜe fa m ɪ ʟʏ uɴɪt is made up of individuals, each with a unique
personality and coping style, as well as age-appropriate needs and
goals. Each person in the family will see the MS in a slightly dif-
fe rent way, and respond to its demands in terms of the way it
impacts his or her particular situat i o n . Thus, the MS will mean
something diffe rent to the husband with MS who can no longer
handle his construction job, his wife who needs to take a job out-
side the home, his young daughter who relies on him to coach
the soccer team, and his teenage son who suddenly finds himself
with a host of new responsibilities around the house.T h e re fore,

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the family’s effo rts to deal with the disease cannot be seen as a uni-
fied, coherent pro c e s s , but rather as the sum total of individual,
sometimes conflicting, coping effo rt s.
For example, a woman might respond to her diagnosis by want-
ing to read eve rything available about MS and its treatments, while
her husband and children want to read and think about MS as lit-
tle as possibl e. Or, a woman might feel the need to discuss her
husband’s MS with friends, re l at i ve s , and even acquaintances,
while he desperately wants to keep it a secre t .While each of these
coping strategies might be perfe c t ly va l i d , the difficulty arises
f rom the fact that diffe rent members of the family may be trying
to utilize themsimu l t a n e o u s ly.
Similarly, a child’s need to know and understand what is hap-
pening to Dad may conflict with the fa m i ly ’s wish for pri va c y.
Not only do young ch i l d ren have tro u ble keeping secrets, bu t
they are also unable to appreciate the potential impact of this kind
of inform ation on their fat h e r ’s employment or place within the
community. As another example, the family’s need to engage in
effective financial planning may fly in the face of their need to
deny the possibility of future disab i l i t y. In other words, the fa m-
ily’s response to the MS is not a simple one.At any given point in
time, it is a reflection of the feelings, attitudes, needs, and pri o r-
ities of each of the people invo l ved.

Disruption Of The Family’s Rhythm

O veʀ tʜe ʏeaʀs, families tend to develop a rhythm of their
own—a reasonably smooth and predictable way of carrying out
the routines of daily life. Each of the adults in the household has,
by spoken or unspoken agreement, taken on certain important
functions in the household. As they grow and deve l o p, each of
the children also takes on an increasing number of age-appropri-
ate ch o res and responsibilities. If one person in the fa m i ly
becomes unable to carry out his or her particular role(s), the
rhythm of the entire family is upset. Whether it is recognized at
the time or not, this shift in roles begins to change the ways in
which fa m i ly members interact and communicate with one
another.The disabled person may begin to feel “sidelined”—out

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of the mainstream of family life. A spouse who needs to take on

more and more of the responsibilities in the household may start
to feel ove r burdened and deprived of the old partnership.Young
ch i l d ren may gradually find themselves in a care g i ver role that
t h re atens their own feelings of security and well-being.

Disruption In Family Communication

T aʟkɪɴɢ aʙout tʜese kinds of changes within the family can
be ve ry difficult for a variety of reasons. First, these changes tend
to happen slowly and there fore outside of most people’s day-to-
day awareness. Families do not talk about them at the time because
they are not awa re that the changes are occurring. Second, peo-
ple often have difficulty talking about changes in family life that
are caused by symptoms they cannot re a d i ly see or understand.
A person who is experiencing MS-re l ated cognitive changes or
seve re fatigue may find it difficult to describe to others how these
symptoms are interfering with daily activities. Similarly, family
members may become frustrated by their inability to see or under-
stand why fa m i ly life is not proceeding as smoothly as it once
did. Third, fa m i ly members tend to be quite pro t e c t i ve of one
another, with the result that painful feelings, questions, and con-
c e rns are often left unexpressed. No one wants to open a Pandora’s
box of stressful issues that have no apparent solutions.And fourth,
people sometimes feel that “the less said, the better,” as though
talking about pro blems will confi rm that they actually exist, and
not talking about them will mag i c a l ly make them go away. The
result of all this may be the “big, gray elephant” phenomenon.The
entire family is tiptoeing around this big gray elephant in its midst
and nobody quite knows how to mention it.

Important Resources and the Barriers to Their Use

F o ʀt u ɴat e ʟʏ, a vaʀɪetʏ of resources exist to help families live
c o m fo rt ably and productively with ch ronic illness (see Chapter
13). H e a l t h c a re teams, vo l u n t a ry health org a n i z at i o n s , e d u c a-
tional mat e rials, and va rious types of pro fessional and self-help
groups are some of the tools available to support families’ c o p-

6 M u ltiple Sclerosis: A Guide for Fa m i l i e s