It Shouldn t Be This Way
193 pages

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The failure of long-term care is the country's best-kept embarrassing secret. Almost every adult in the United States will either enter a nursing home or have to deal with a parent or other relative who does. Studies show that 40 percent of all adults who live to age sixty-five will enter a nursing home before they die, while even more will use another form of long-term care.

Part memoir, part practical guide, part prescription for change, It Shouldn't Be This Way is a unique look at the problems of long-term care. Robert L. Kane, a highly experienced physician and gerontologist, and his sister, Joan C. West, tell the painful story of what happened to their mother after she suffered a debilitating stroke and spent the last years of her life in rehabilitation, assisted-living facilities, and finally a nursing home. Along the way, her adult children encountered some professionals who were kind and considerate but also many frustrations—inadequate care and the need to hire private duty aides, as well as poor communication and lack of coordination throughout the system. The situation, they found, proved far more difficult than it needed to be.

As the authors recount their mother's story, they impart various lessons they learned from each phase of the experience. They alert those who are confronting such situations for the first time about what they will likely face and how to approach the problems. Closing with a broader look at why long-term care is the way it is, they propose steps to make necessary reforms, including the development of national organizations to work for change. Their message to families, care professionals, and policy-makers could not be more urgent.



Publié par
Date de parution 16 mai 2005
Nombre de lectures 0
EAN13 9780826591944
Langue English
Poids de l'ouvrage 2 Mo

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“Màny Of thE àuthOrs’ insights will bE usEful tO càrEgivErs— EspEciàlly thOsE càring fOr EldErly pàrEnts—whO nEEd tO knOw:
Thàt hOspitàls hàvE thEir Own institutiOnàl nEEds àt hEàrt, nOt yOur pàrEnts’ Thàt dischàrgE plànnErs àrE nOt yOur friEnds HOw tO EvàluàtE nursing hOmEs WhEn ànd hOw tO cOnduct discussiOns àbOut DNR (dO nOt rEsuscitàtE) wishEs
“ThEsE ànd OthEr pràcticàl but cruciàl issuEs àrE dEàlt with in clEàr dEtàil thàt will hElp pEOplE knOw hOw tO àct ànd tàlk whEn thEy àrE in similàr situàtiOns. BEyOnd thEsE pràcticàl things, KànE ànd WEst illuminàtE thE EmOtiOnàl làndscàpE Of pàrEntàl càrE— EvEn hàrdEr issuEs tO prEpàrE fOr ànd tO tàlk àbOut.
“It’s à trEmEndOusly wOrthwhilE bOOk, with EnOrmOus pOtEntiàl vàluE bOth tO lày pEOplE ànd pOlicy prOfEssiOnàls.”
— DeBoRaH SToNe,  REsEàrch PrOfEssOr, DEpàrtmEnt Of  GOvErnmEnt, DàrtmOuth COllEgE
ItSHouldntBehisWay heFailureofLong-TermCare
Robert L. Kane, MD & Joan C. West
It Shouldn’t Be This Way
He Failure of Long-Term Care
Robert L. Kane, M. D. and Joan C. West
V A N D E R B I L T U N I V E R S I T Y P R E S S Nashville
© 2005 Vanderbilt University Press All rights reserved First Edition 2005
Printed on acid-free paper Manufactured in the United States of America Design by Gary Gore
Library of Congress Cataloging-in-Publication Data
Kane, Robert L., 940–  It shouldn’t be this way : the failure of long-term care / Robert L. Kane and Joan C. West.—st ed. p. ; cm. Includes bibliographical references and index.  0-8265-487- (cloth : alk. paper)  0-8265-488- (pbk. : alk. paper)  . Older people—Long-term care—United States—Case studies. 2. Kane, Ruth, d. 2002. 3. Kane, Robert L., 940– 4. West, Joan C., 945- 5. Caregivers—United States Biography. 6. Frail elderly—United States—Biography. 7. Long-term care facilities—United States—Case studies. 8. Frail elderly—Care—United States—Case studies. 9. Frail elderly—United States—Family relationships—Case studies.  [: . Long-Term Care—psychology—Personal Narratives. 2. Family—psychology—Personal Narratives. 3. Homes for the Aged— organization & administration—Personal Narratives. 4. Nursing Homes—organization & administration—Personal Narratives.  3 56i 2005] I. West, Joan C., 945– II. Title. 997.355 2005 362.6’0973—dc22 200402892
1 1 11 1
Introduction Background e Stroke Rehabilitation Assisted Living e Dementia Unit Nursing Home Doctors, Other Medical Personnel, and Hospitals Informal Care e Roads Not Taken e End of Life What Kind of Long-Term Care Do We Want? What Can We Do About It?
Appendix 1: Suggested Reading Appendix : Web-Based Resources Index
1 1 1   11 11 1 1 11
11 1 1
From left to right: As a hat model before her marriage, circa 1932; wedding photo, 1936; looking at Joan as a baby, 1945; on a cruise with her husband, 1968; visiting Robert, 1983; on a date, 1989; in assisted living, 2001.
We dedicate this book to our mother, Ruth Kane, who did not want her life to end this way, in the hope that her experiences will inspire others to act. We hope, too, that her grandchildren will not have to share a similar fate.
he demand for long-term care is increasing steadily. It is the T country’s best-kept embarrassing secret. Almost every adult in this country will either enter a nursing home or have to deal with a parent or other relative who does. Demographic studies suggest that 40 percent of all adults in this country who live to age sixty-five will enter a nursing home before they die. Even more will use some other form of long-term care. Few people, however, are aware of this growing demand and few are prepared to deal with a system that is seriously flawed.  Some people believe that the key to dealing with long-term care is adequate preparation. Buying insurance and considering options for care should suce. Alas, even these steps are not sucient. You simply cannot rehearse the trials that long-term care subjects you to. at is why the system has to change. It is not enough to simply leave it up to each of us to be better prepared. Why should we gird up to battle a bad system? 1
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