A Guide for Families Third Edition

Transcription

1 Multiple Sclerosis A Guide for Families Third Edition Rosalind C. Kalb, Ph.D.

2 Mu l tiple Scl e r o s i s A Guide for Families Third Edition Rosalind C. Kalb, Ph.D.

3 Demos Medical Publishing 386 Pa rk Ave nue South N ew Yo rk, NY 10016, U S A 2006 by Demos Medical Publ i s h i n g,l L C.All rights re s e rve d. This book is p rotected by copy ri g h t. No part of it may be re p ro d u c e d, s t o red in a re t ri eval s y s t e m, or transmitted in any fo rm or by any means, e l e c t ro n i c, m e ch a n i c a l, p h o t o c o py i n g, re c o r d i n g,or otherwise without the prior written permission of the publ i s h e r. Designed and produced by Reyman Studio C o pye d i t o r: Nelda Hills I n d e x i n g : Joann Woy P ri n t e r:tr a n s c o n t i n e n t a l Visit our website at w w w. d e m o s m e d p u b. c o m h t t p : / / w w w. d e m o s m e d i c a l p u b. c o m Library of Congress Cataloging-in-Publication Data Kalb, Rosalind. Multiple sclerosis : a guide for families / Rosalind C. Kalb.-- 3rd ed. p. cm. Includes index. ISBN (pbk. : alk. paper) 1. Multiple sclerosis--popular works. 2. Multiple sclerosis--patients--family relationships--popular works. I.Title. RC377.M '34--dc

4 D e d i c at i o n To the memory of Labe Scheinberg, MD, a pioneer in the care of people with MS and their families. He recognized early that MS affects not only the person who has the disease, but all those who live with it as well. Dr. Scheinberg devoted his career to helping people live more comfortably and productively with MS, and teaching a generation of healthcare professionals the importance of comprehensive, interdisciplinary care for everyone affected by this disease.

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6 C o n t e n t s Foreword by Nancy J. Holland 1 When MS Joins the Family Rosalind Kalb Emotional and Cognitive Issues Nicholas LaRocca The Family s Relationship with the Physician and the Healthcare Team Jack Burks Sexuality and Intimacy in Multiple Scleroris Frederick Foley Fertility, Pregnancy, and Childbirth Kathy Birk and Barbara Giesser Parenting Issues Peggy Crawford and Deborah Miller Parenting a Child with MS Rosalind Kalb and Lauren Krupp Adults with MS and Their Parents Rosalind Kalb and Faith Seidman

7 9 The Caregiving Relationship Deborah Miller and Peggy Crawford Planning Wisely for Possible Care Needs Dorothy Northrop General Health and Well-Being Kathy Birk and Elizabeth H. Morrison Life Planning: Financial and Legal Considerations for Families Living with MS Laura D. Cooper Supportive Resources for Families Nancy Holland, Kimberly Koch, and Deborah Hertz Appendix A: Additional Readings Appendix B: Recommended Resources Appendix C: Professional Biographies of the Authors Index vi C o n t e n t s

8 Fo rewo r d W hy is a guide for families needed? Aʟtʜouɢʜ maɴʏ adva ɴ c e s h ave been made in the understanding and tre atment of multiple sclerosis (MS) since 1998, when the first edition of this book was publ i s h e d, the ch a l l e n g e s for families living with MS continue to be signifi c a n t. The cont ri butors to the new edition remain committed to providing fa m- i ly 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 marri ag e, ch i l d re n, and care e r s. F rom diagnosis onwa r d, the disease can a f fect the life cycle of the entire fa m i ly, compounding and confusing the normal transitions and stresses of eve ry d ay living. L i fe ch a l l e n g e s, including marri ag e, child re a ri n g,job ch a n g e s, re t i rem e n t, and the death of elderly pare n t s, a re often complicated by the presence of MS. W h at happens when a promising career is detoure d, re s u l t i n g in the loss of college funds for the ch i l d ren and re t i rement 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 fa m i ly mem-

9 bers feel when their roles in the household begin to shift in response to the demands of the illness? How do older couples t h at are pre p a ring for a long-planned and we l l - d e s e rved re t i rement deal with an adult child who re t u rns home with a significant disability? How can a fa m i ly plan for a future that has been re d e fined by an unpre d i c t able disease? Multiple Sclero s i s :A Guide for Families has been written to address these important questions. H ow will this book be helpful for families living with MS? Famɪʟɪes expeʀɪeɴcɪɴɢ M S often find themselves in unch a rt e d t e rri t o ry. P rior pat t e rns of interacting with one another may u n d e rgo major ch a n g e s.the disease may re q u i re shifts in roles and responsibilities that have a significant impact on the lives of all fa m i ly members. G u i l t, a n g e r, s a d n e s s, and a sense of burden can become part of the fa m i ly fab ric and cre ate barriers to intimacy, j oy, g row t h, and fa m i ly unity.this book can help families negot i ate their way through these barriers or even better find way s to prevent them from deve l o p i n g. This book enables families to m ove toward a re s t o r ation of balance, h u m o r, p ro d u c t i v i t y, a n d fa m i ly solidari t y. It can lead the way for fa m i l i e s, helping them to understand the potential impact of MS on fa m i ly life, s t re n g t h e n- ing coping strat e g i e s, and planning more effe c t i ve ly for the uncertain tomorrow s. This book helps to provide a feeling of connection for fa m i l i e s living with this ch ronic and unpre d i c t able disease. It ack n ow 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 a l o n e. H e a ring this message is an important first step in taking action to get the help and support eve ryone needs to live comfo rt ably with the challenges of MS.The info rm ation in these ch apters is commu n i c ated by we l l - k n own experts in each are a. D i f fi c u l t but crucial topics, including cognitive and emotional ch a n g e s, s e x u a l i t y, p a re n t - child re l at i o n s h i p s, c a re giving ch a l l e n g e s, a n d the financial and legal aspects of sound life planning, a re addre s s e d d i re c t ly and compre h e n s i ve ly. One goal of the guide is to encourage fa m i ly members to discuss the disease more openly in order viii Fo r e w o r d

10 to explore and clarify their individual perspectives on the experience of MS. The third edition of Multiple Sclero s i s : A Guide for Fa m i l i e s o f fers new ch apters that address the topics of potential long-term c a re needs, and the challenges of parenting a child or teen with M S. Other ch apters have been expanded and updated to cre ate a dynamic and extre m e ly useful and usable book for families living with MS and the pro fessionals who assist them. Nancy J. H o l l a n d, R. N., E d. D. Fo re wo r d ix

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12 1. When MS Joins the Family Rosalind Kalb, Ph.D. Tʜe 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 disease 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- t i o n a l, or social goals; men and women in the process of launching careers and families of their ow n ; and those in middle ag e who are enjoying their pro d u c t i ve years and planning for their re t i re m e n t s. In each of these age gro u p s, the diagnosis of a ch ro n i c and unpre d i c t able disease has significant impact, not only on the individual who re c e i ves the diagnosis of MS, but also on the fa m- i ly members and loved ones whose lives are interwoven with that person (see Chapters 6, 8, and 9). W h at is it about MS that makes its impact on the fa m i ly so gre at? MS is a chronic disease Aʟtʜouɢʜ we ɴow h ave several tre atments designed to modify the course of the disease, we still have no cure for MS. S i n c e the illness has little impact on life expectancy, the person diag-

13 nosed with MS will like ly be living and coping with its effe c t s for many ye a r s. MS has often been compared to the u n i nv i t e d g u e s t who arri ves at the door one day, complete with bag g ag e, and never goes home.the guest moves into the household, u s i n g up space in eve ry room of the house, and taking part in eve ry fa m i ly activity. MS is unpredictable No oɴe caɴ p redict with any certainty how a person with MS will fa re several years down the ro a d. While it causes seve re or i n c ap a c i t ating disability for re l at i ve ly few, it cre ates a bew i l d e ri n g question mark for all. Individuals with MS and their fa m i ly members may have difficulty anticipating what the next day or we e k will bri n g, let alone the more distant future.as a re s u l t, the established rhythms of daily life can be seve re ly disrupted as fa m i ly members attempt to respond to the demands of the illness. Planning becomes diffi c u l t, c re ating an ongoing need for flexibility 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 ow s, 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 system in the body, people feel vulnerable both phy s i c a l ly and psych o l o g i c a l ly. 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 pro bl e m s, changes in sexual function, visual impairm e n t, and sensory ch a n g e s ), as well as intellectual and emotional ch a n g e s. W h at s n e x t? is the question commonly asked by individuals and fa m- ilies living with MS. U n fo rt u n at e ly, it is difficult to predict the a n swe r. MS is expensive Iʟʟɴess of aɴʏ kind can be expensive, and a ch ronic disease t h at appears during a person s most pro d u c t i ve years can have major financial consequences for the entire fa m i ly. In addition to 2 M u ltiple Sclerosis: A Guide for Fa m i l i e s

14 this more obvious cost in dollars and cents, t h e re is a signifi c a n t drain on other fa m i ly re s o u r c e s, including time, e n e rg y, and emot i o n s. Families living with MS face the daily challenge of try i n g to distri bute these va l u able resources eve n ly among all fa m i ly m e m b e r s. MS should not be allowed to sap any more of these resources than it ab s o l u t e ly needs; o t h e r w i s e, the needs of other fa m i ly members may go unmet (see Chapter 11). Emotions Lɪvɪɴɢ wɪtʜ M S poses an ongoing challenge to the emotional e q u i l i b rium of a fa m i ly (see Chapter 2). Both the person who has MS and fa m i ly members experience feelings of loss and gri e f with each new symptom and each change in functional ab i l i t y. E a ch pro g ression in the illness re q u i res the entire fa m i ly to adjust to the loss and re d e fine themselves accordingly. Who am I now t h at I can no longer do some of those things that helped to defi n e me as me? Who are we as a couple now that our part n e r s h i p is being re d e fined by MS? Who are we as a fa m i ly now that our roles have changed and our re l ationships to each other and to the c o m munity are ch a n g i n g? Along with grief comes anxiety over being unable to pre d i c t w h at the future will bri n g.while all people live with uncert a i n t y, most are not so awa re of it on a day - t o - d ay 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 ove r w h e l m e d with w h at if s. Anger can also become a part of life with MS. When uncert a i n t y, ch a n g e, and loss thre aten the fa m i ly s sense of order and c o n t ro l, individual fa m i ly members may feel increasing re s e n t- m e n t t oward the MS, t oward 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 fo r 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.l e a rning to re c o g n i z e, c o m mun i c at e, and share these feelings with one another helps fa m i ly members to cope with them more comfo rt ably. When MS Joins the Fa m i ly 3

15 Energy Tʜe eɴeʀɢʏ dʀaɪɴ on families living with MS comes both fro m the effo rt re q u i red to do things diffe re n t ly and from the emotions that surround these adjustments. Families who have experienced 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. Pa rt of this effo rt invo l ves finding altern at i ve way s to get things done; p a rt of it invo l ves dealing with the feelings that e a ch person has about having to incorp o r ate these changes into d a i ly life. Ti m e. MS tends to slow people dow n.the va rious physical and p s y chological symptoms of the disease interfe re with the activities not only of the person who has the illness, but also of anyone in the household who shares those activities.time is a va l u abl e commodity for today s busy fa m i l i e s, and the need to slow the p a c e, postpone activities, or re a rrange schedules can produce a n ew kind of stress for all concern e d. Challenges to Family Coping Famɪʟɪes effoʀts to cope with the intrusion of MS into their l i ves are challenged not only by the complexities of the disease, but also by the complexities of the families themselve s. W h at is it about families that complicates the coping pro c e s s? Individual Needs and Coping Styles Tʜe fa m ɪ ʟʏ uɴɪt is made up of individuals, e a ch with a unique personality and coping style, as well as ag e - ap p ro p ri ate needs and g o a l s. E a ch person in the fa m i ly will see the MS in a slightly diffe rent way, and respond to its demands in terms of the way it impacts his or her particular situat i o n. T h u s, 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 outside 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 fo re, 4 M u ltiple Sclerosis: A Guide for Fa m i l i e s

16 the fa m i ly s effo rts to deal with the disease cannot be seen as a unifi e d, c o h e rent 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 wa n t- ing to read eve rything ava i l able about MS and its tre at m e n t s, w h i l e her husband and ch i l d ren want to read and think about MS as little as possibl e. O r, a woman might feel the need to discuss her h u s b a n d s MS with fri e n d s, re l at i ve s, and even acquaintances, while he desperat e ly 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 ari s e s f rom the fact that diffe rent members of the fa m i ly may be try i n g to utilize them simu l t a n e o u s ly. S i m i l a r ly, a ch i l d s need to know and understand what is happening 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 secre t s, bu t t h ey are also unable to ap p re c i ate the potential impact of this kind of info rm ation on their fat h e r s employment or place within the c o m mu n i t y. As another example, the fa m i ly s need to engage in e f fe c t i ve financial planning may fly in the face of their need to d e ny the possibility of future disab i l i t y. In other wo r d s, the fa m- i ly s response to the MS is not a simple one.at any given point in t i m e, it is a reflection of the fe e l i n g s, at t i t u d e s, n e e d s, and pri o r- ities of each of the people invo l ve d. Disruption Of The Family s Rhythm Oveʀ tʜe ʏeaʀs, families tend to develop a rhythm of their own a re a s o n ably smooth and pre d i c t able way of carrying out the routines of daily life. E a ch of the adults in the household has, by spoken or unspoken ag re e m e n t, t a ken on certain import a n t functions in the household. As they grow and deve l o p, e a ch of the ch i l d ren also takes on an increasing number of ag e - ap p ro p riate ch o res and re s p o n s i b i l i t i e s. If one person in the fa m i ly becomes unable to carry out his or her particular ro l e ( s ), t h e r hythm of the entire fa m i ly is upset.whether it is recognized at the time or not, this shift in roles begins to change the ways in w h i ch fa m i ly members interact and commu n i c ate with one a n o t h e r.the disabled person may begin to feel s i d e l i n e d o u t When MS Joins the Fa m i ly 5

17 of the mainstream of fa m i ly life.a spouse who needs to take on m o re and more of the responsibilities in the household may start to feel ove r burdened and depri ved of the old part n e r s h i p.yo u n g 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 we l l - b e i n g. Disruption In Family Communication Taʟkɪɴɢ aʙout tʜese kinds of changes within the fa m i ly can be ve ry difficult for a va riety of re a s o n s. F i r s t, these changes tend to happen slow ly and there fo re outside of most people s day - t o - d ay awa re n e s s. Families do not talk about them at the time because t h ey are not awa re that the changes are occurri n g. S e c o n d, p e o- ple often have difficulty talking about changes in fa m i ly life that a re 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 s eve re fatigue may find it difficult to describe to others how these symptoms are interfe ring with daily activities. S i m i l a r ly, fa m i ly members may become fru s t r ated by their inability to see or understand why fa m i ly life is not proceeding as smoothly as it once d i d. T h i r d, fa m i ly members tend to be quite pro t e c t i ve of one a n o t h e r, with the result that painful fe e l i n g s, q u e s t i o n s, and conc e rns are often left unexpre s s e d. No one wants to open a Pa n d o r a s b ox of stressful issues that have no ap p a rent solutions.and fo u rt h, people sometimes feel that the less said, the better, as though talking about pro blems will confi rm that they actually exist, a n d not talking about them will mag i c a l ly make them go away. T h e result of all this may be the b i g, g r ay elephant p h e n o m e n o n.t h e e n t i re fa m i ly is tiptoeing around this big gray elephant in its midst and nobody quite knows how to mention it. Important Resources and the Barri e rs to Their Use Fo ʀt u ɴat e ʟʏ, a vaʀɪetʏ of resources exist to help families live c o m fo rt ably and pro d u c t i ve ly with ch ronic illness (see Chap t e r 1 3 ). 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 ri a l s, and va rious types of pro fessional and self-help g roups are some of the tools ava i l able to support fa m i l i e s c o p- 6 M u ltiple Sclerosis: A Guide for Fa m i l i e s

18 ing effo rt s. U n fo rt u n at e ly, t h e re also seem to be significant barriers to the effe c t i ve utilization of these re s o u r c e s. Some of the barriers are social and economic while others are mu ch more personal and emotional.access to quality healthcare is not universal in this country, and access to pro fessionals with e x p e rtise in MS is even more limited. Pa rt i c u l a r ly in this new ag e of cost containment and managed care, individuals who have MS m ay feel a growing pre s s u re to monitor and manage their ow n c a re (see Chapter 3). Of even gre ater concern, h oweve r, is the fact that many people do not make use of important resources even when they are re a d- i ly ava i l abl e. M a ny families refrain from seeking help because of reluctance to ack n owledge the potential impact of MS on their l i ve s, or to think about MS more than is ab s o l u t e ly necessary.t h ey m ay be afraid that thinking about current or potential pro bl e m s will somehow make the pro blems seem more re a l. Other fa m i- lies seem to feel that seeking outside help or support is an indic ation of their own weakness or inadequacy; t h ey would rat h e r go it alone. T h ey do not recognize that these resources are the kinds of tools that might enable them to go it alone m o re effe c- t i ve ly. Recommended Strategies For Family Coping Tʜe fɪʀst ɪmpo ʀtaɴt s t r ategy of the fa m i ly should be to give M S, or the u n i nvited guest, no more space in the household than it needs. As Dr. Peter Steinglass and his colleagues have so ap t ly phrased it, The goal is to find a place for the illness while keeping the illness in its place. A fa m i ly can develop and thri ve o n ly when the emotional and developmental needs of each of its members are being met.the fa m i ly s balance is thre atened when MS is allowed to drain more than its share of the fa m i ly s fi n a n- c i a l, e m o t i o n a l, and physical re s o u r c e s. Instead of a fa m i ly with one disabled member, the result is a disabled fa m i ly. S i m i l a r ly, it is important that the interests and activities of fa m- i ly members not be ove r ly re s t ricted by the disabilities of the person who has MS. In other wo r d s, families need to learn how to s t ri ke a re a s o n able balance between the interests and abilities of When MS Joins the Fa m i ly 7

19 their disabled and nondisabled members. When guilt fe e l i n g s cause fa m i ly members to give up favo rite activities in which the person with MS can no longer part i c i p at e, the entire fa m i ly may s t a rt to feel uncomfo rt abl e ; the person with MS begins to fe e l guilty over the limitations on other fa m i ly members while they, in turn, begin to resent feeling d i s abl e d by a disease that is not their ow n. The goal is for families to find a way to accommodat e the limitations imposed by MS without allowing those limitations to impact eve ry aspect of fa m i ly life. The second recommended coping strategy is often a bit more d i f ficult for families to accept, because it invo l ves hoping for the best while planning for the worst that might occur (see Chap t e r s 10 and 12). Planning for the worst invo l ves learning about the p o s s i ble ways that MS can affect your life and trying to implement plans or strategies n ow t h at would cushion the bl ow if the worst came to pass. For example, a young woman with MS and her husband are starting to look for their first house. While the most exciting and romantic strategy might be to buy the thre e - s t o ry Vi c t o rian they have always wa n t e d, the more practical strategy might be to narrow the choice to houses that are all on one l eve l. T h e n, in the event that the wo m a n s walking diffi c u l t i e s become more seve re, she will be able to enjoy her whole house without feeling re s t ricted to one or another floor. S i m i l a r ly, a couple in which one of the partners has MS might want to think m o re conservat i ve ly about the amount of money they are putting into sav i n g s.the savings will be there as a safety net if the fa m- i ly income is reduced because of disab i l i t y. If the MS neve r becomes seve re enough to thre aten the fa m i ly s income, the wo r s t t h at happens is that more money has been put aside for re t i rem e n t, a ch i l d s college educat i o n, or a wonderful va c at i o n. M a ny families resist this kind of planning strategy because thinking about the wo r s t seems too fri g h t e n i n g.t h e re is almost a superstition that thinking about these possibilities will make them happen and pushing them out of one s mind will preve n t t h e m. U n fo rt u n at e ly, these kinds of beliefs can keep families perp e t u a l ly off-balance; eve ry exacerbation or change in the person s p hysical or cognitive abilities feels like an unexpected bl ow fo r w h i ch fa m i ly members are totally unpre p a re d. Becoming edu- 8 M u ltiple Sclerosis: A Guide for Fa m i l i e s

20 c ated about the potential impact of MS on the fa m i ly, and taking steps to protect the fa m i ly s fi n a n c i a l, s o c i a l, and emotional we l l - b e i n g, can help each person feel less vulnerable in the face of this u n p re d i c t able disease. Where Do We Go From Here? Tʜe ɢoaʟ of this ch apter is to provide a general ove rv i ew of the potential impact of MS on fa m i ly life.the fo l l owing ch ap t e r s e x p l o re in gre ater detail the issues that have been raised here. E a ch includes descriptions of some of the challenges that can a rise as well as realistic strategies for enhancing each fa m i ly s quality of life n ow and in the future. Additional Readings National MS Society Publications (available by calling FIGHT- MS ( ) or online at society.org/library.asp) Living with MS Minden Sarah L and Debra Frankel. Plaintalk:A Booklet About MS for Families Someone You Know Has MS:A Book for Families General Readings Blackstone M.The First Year Multiple Sclerosis:An Essential Guide for the Newly Diagnosed. New York: Marlowe and Co Holland N, Murray TJ, Reingold SC. Multiple Sclerosis:A Guide for the Newly Diagnosed (2nd ed.), 2001 [Spanish translation: Esclerosis Multiple: Guia Practica Para el Recien Diagnosticado, 2002] Kalb R, (ed.) Multiple Sclerosis:The Questions You Have;The Answers You Need (3rd ed.). New York: Demos Medical Publishing, Kramer D. Life on Cripple Creek: Essays on Living with Multiple Sclerosis, Pitzele SK. We are not alone: Learning to live with chronic illness. New York: Workman Publishing, When MS Joins the Fa m i ly 9