In Death's Waiting Room: Living and Dying with Dementia in a Multicultural Society (Amsterdam University Press - Care and Welfare Series) PDF
Preview In Death's Waiting Room: Living and Dying with Dementia in a Multicultural Society (Amsterdam University Press - Care and Welfare Series)
Anne-Mei The is a senior researcher in the care & Department of Contemporary History at the care & University of Amsterdam, Director of the Institute for welfare welfare Communication and Cooperation in Care (ICISZ), and Anne-Mei The co-founder of Martha Flora Homes, a chain of private nursing homes. The number of those with dementia is increasing in Western countries and In Death’s as a result this penetrating story about people suffering from dementia concerns us all. It is based on two years of ethnographic research in a Waiting Room nursing home in the Netherlands and reveals what usually remains hidden: the decisions to terminate treatment, the poverty and voodoo rituals of the Living and Dying with Dementia in a Multicultural Society black Caribbean nursing staff, the communication problems, the tensions and the aggression; but also the touching and the funny moments. The’s book also discusses ‘the Blauwbörgje case’, in which a nursing home refused to rehydrate a man with dementia because they considered his condition to be terminal, but his family disagreed and pressed charges for attempted murder. The author explains what happened and why, and teases out the wider relevance of the case. In Death’s Waiting Room: Living and Dying with Dementia in a Multicultural Society is as readable as a novel, but forces us to think deeply about our own potential confrontation with dementia. Acutely, but sensitively, Anne-Mei The takes us into the world of patients with dementia. It is a revealing experience. Professor James Kennedy, historian Anne-Mei The leads us through the nursing home as Dante was once led through hell, showing us all its aspects. Professor A. van Dantzig, psychiatrist www.aup.nl A U P A U P AUP_The_def.indd 1 05-03-2008 12:58:30 care & In Death’s Waiting Room The welfare In Death’s Waiting Room CARE & WELFARE Care and welfare are changing rapidly in contemporary welfare states. The Care & Welfare series publishes studies on changing relationships between citizens and professionals, on care and welfare governance, on identity politics in the context of these welfare state transformations, and on ethical topics. It will inspire the international academic and political debate by developing and reflecting upon theories of (health) care and welfare through detailed national case studies and/or international com- parisons. This series will offer new insights into the interdisciplinary theory of care and welfare and its practices. series editors Jan Willem Duyvendak, University of Amsterdam Trudie Knijn, Utrecht University Monique Kremer, Netherlands Scientific Council for Government Policy (Wetenschappelijke Raad voor het Regeringsbeleid – WRR) Margo Trappenburg, Utrecht University, Erasmus University Rotterdam previously published Jan Willem Duyvendak, Trudie Knijn and Monique Kremer (eds.), Policy, People, and the New Professional. De-professionalisation and Re-professio- nalisation in Care and Welfare, 2006 (ISBN 978 90 5356 885 9) Ine van Hoyweghen, Risks in the Making. Travels in Life Insurance and Genetics, 2007 (ISBN 978 90 5356 927 6) In Death’s Waiting Room Living and Dying with Dementia in a Multicultural Society Anne-Mei The Cover illustration: © Marcel van den Bergh / Hollandse Hoogte Cover design: Sabine Mannel, NEON Design, Amsterdam Lay-out: JAPES, Amsterdam ISBN 978 90 5356 077 8 NUR 740 © Anne-Mei The / Amsterdam University Press, 2008 All rights reserved. Without limiting the rights under copyright reserved above, no part of this book may be reproduced, stored in or introduced into a retrieval system, or transmitted, in any form or by any means (electronic, mechanical, photocopying, recording or otherwise) without the written permission of both the copyright owner and the author of the book. Contents Acknowledgements 7 Preface 9 Introduction 11 How It All Started 15 Part I Park House Life in Park House 21 Mrs Van Dam Dies 27 The Family 31 Eating Problems 37 Staff Vicissitudes 40 Mrs Scharloo Doesn’t Want To Go On 46 Daily Care 55 Everyday Life 63 Inadequate Care 71 Versterven 77 Wanting to Die 84 Rough Treatment 91 Reorganisation and Black Magic 101 Leontien and Mrs Grasberg 113 Strong Women, Loafing Men 119 Limited Labour Market 126 The Big Problem 131 The Coup and the Death of Mrs Driessen 137 Part II The Blauwbörgje Case The Nursing Home Doctor’s Husband 149 The Ex-wife 155 5 The Nursing Home Doctor 160 The Colleague of the Nursing Home Doctor 165 The Daughter 173 The Managers 177 The Internist 181 The Head Nurse 184 The Journalist 188 Mr Bruggeling 191 The Doctors at De Merenberg 193 The Researcher 197 How It All Ended 202 Notes 203 6 contents Acknowledgements Without the help and the hospitality of the staff, the residents and the visitors at Park House I would not have been able to study the hidden world of the nursing home. I have learned much from them and I am grateful. I would also like to thank those involved in the Blauwbörgje case who shared their thoughts with me, and the many experts who discussed var- ious aspects of nursing home care with me. There are also many who helped to make this book a reality, but I would like to mention a few who made a substantial contribution: Her- man Ader, Erik van Aert, Martin Boekholdt, Jan Eefsting, Faye Cossar, Judith Coutinho, Mariel Croon, Dries van Danzig, Robert Eggink, Sjaak van der Geest, Magdelena Hernas, Cees Hertogh, James Kennedy, Bert Keizer, Cilia Linssen, Forough Nayeri, Roeline Pasman, Rissa Philip, Ir- ene Schenker, Marjan Verkerk, Hendrik Jan de Vries, Gerrit van der Wal, Fons van Wanroy, and of course Onno Zijlstra. The observations in Park House were part of a study of versterven com- missioned by the Dutch Ministry of Health (VWS), the Dutch edition of the book, In de Wachtkamer van de Dood: Leven en Sterven met Dementie in een Verkleurende Samenleving, was made possible by a grant from Het Zonnehuisgroep. I carried out the research and wrote the book while I was a senior research fellow in the Department of Social Medicine and the EMGO Institute at the Free University in Amsterdam. The transla- tion was made possible by a grant from The Netherlands Organisation for Scientific Research (NWO). I would like to thank Robert Pool for translating the book into English. 7 Preface People living in care homes are probably the most vulnerable and least powerful individuals in society. Being dependant on someone else for all your health, social and care needs can result in the individual being si- lenced and marginalised. Despite a positive increase in research and practice interest focusing on this area in attempts to provide more positive relationship centred care practices general understandings and knowledge of care home prac- tices remain limited. What is essential is that the often very difficult and sensitive concerns inherent in providing institutional (and institutionalised) care responses to silenced and vulnerable people should be voiced, debated and given priority. In Death’s Waiting Room is an accessible and detailed account of the experiences of residents, staff and relatives in a care home setting especially in relation to the complex issues and decisions that come with the dying process. In the telling of sad, distressing and difficult stories Anne-Mei The highlights many key theoretical concerns but in a manner that makes clear the complexity of how such concerns are played out in practice. The presentation of life and death in Park House engages the reader with these lived complexities in ways that are both fascinating and chal- lenging. The reader is drawn into demanding and thought-provoking questions on urgent issues for society and for our own lives. The book is an essential and stimulating read for all of us trying to improve the lives of residents, relatives and staff in care homes. It is not only about how to understand better the challenges to providing better care but also how to understand and improve the processes and practices of supporting a good death. Dr Heather Wilkinson Colm Cunningham Centre for Research on Dementia Services Families and Relationships Dementia Services Development Centre Edinburgh University University of Stirling 9
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