In Death's Waiting Room: Living and Dying With Dementia in a Multicultural Society

204 Pages·2008·0.943 MB·English

by  Anne-Mei The

Anne-Mei The is a senior researcher in the wc
ea
care & Department of Contemporary History at the lfre care &
a &
welfare University of Amsterdam, Director of the Institute for re welfare
Communication and Cooperation in Care (ICISZ), and Anne-Mei The
co-founder of Martha Flora Homes, a chain of private
I
n
nursing homes. In Death’s
D
e
The number of those with dementia is increasing in Western countries and a
t
h
as a result this penetrating story about people suffering from dementia
’ Waiting Room
s
concerns us all. It is based on two years of ethnographic research in a W
nursing home in the Netherlands and reveals what usually remains hidden: a
i
t
the decisions to terminate treatment, the poverty and voodoo rituals of the in
Living and Dying with Dementia in a Multicultural Society
g
black Caribbean nursing staff, the communication problems, the tensions

R
and the aggression; but also the touching and the funny moments. o
o
The’s book also discusses ‘the Blauwbörgje case’, in which a nursing home m
refused to rehydrate a man with dementia because they considered his
condition to be terminal, but his family disagreed and pressed charges for T
h
e
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
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AUP_The_def.indd 1 05-03-2008 12:58:30
InDeath’sWaitingRoom
CARE &WELFARE
Care and welfare are changing rapidly in contemporary welfare states.
The Care & Welfare series publishes studies on changing relationships
between citizensand professionals, on care and welfare governance, on
identitypoliticsinthecontextofthesewelfarestatetransformations,and
on ethical topics. It will inspire the international academic and political
debate by developing and reflecting upon theories of (health) care and
welfarethroughdetailednationalcasestudiesand/orinternationalcom-
parisons. This series will offer new insights into the interdisciplinary
theoryofcareandwelfareanditspractices.
series editors
JanWillemDuyvendak,UniversityofAmsterdam
TrudieKnijn,UtrechtUniversity
MoniqueKremer,NetherlandsScientificCouncilforGovernmentPolicy
(WetenschappelijkeRaadvoorhetRegeringsbeleid–WRR)
MargoTrappenburg,UtrechtUniversity,ErasmusUniversityRotterdam
previously published
JanWillemDuyvendak,TrudieKnijnandMoniqueKremer(eds.),Policy,
People,and theNew Professional.De-professionalisation andRe-professio-
nalisationinCareandWelfare,2006(ISBN9789053568859)
Ine van Hoyweghen, Risks in the Making. Travels in Life Insurance and
Genetics,2007(ISBN9789053569276)
In Death’s Waiting
Room
Living and Dying with Dementia in a
Multicultural Society
Anne-Mei The
Coverillustration:©MarcelvandenBergh/HollandseHoogte
Coverdesign:SabineMannel,NEONDesign,Amsterdam
Lay-out:JAPES,Amsterdam
ISBN 9789053560778
NUR 740
©Anne-MeiThe/AmsterdamUniversityPress,2008
Allrightsreserved.Withoutlimitingtherightsundercopyrightreserved
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
thebook.
Contents
Acknowledgements 7
Preface 9
Introduction 11
HowItAllStarted 15
Part I Park House
LifeinParkHouse 21
MrsVanDamDies 27
TheFamily 31
EatingProblems 37
StaffVicissitudes 40
MrsScharlooDoesn’tWantToGoOn 46
DailyCare 55
EverydayLife 63
InadequateCare 71
Versterven 77
WantingtoDie 84
RoughTreatment 91
ReorganisationandBlackMagic 101
LeontienandMrsGrasberg 113
StrongWomen,LoafingMen 119
LimitedLabourMarket 126
TheBigProblem 131
TheCoupandtheDeathofMrsDriessen 137
Part II The Blauwbörgje Case
TheNursingHomeDoctor’sHusband 149
TheEx-wife 155
5
TheNursingHomeDoctor 160
TheColleagueoftheNursingHomeDoctor 165
TheDaughter 173
TheManagers 177
TheInternist 181
TheHeadNurse 184
TheJournalist 188
MrBruggeling 191
TheDoctorsatDeMerenberg 193
TheResearcher 197
HowItAllEnded 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.
IwouldalsoliketothankthoseinvolvedintheBlauwbörgjecasewho
sharedtheirthoughtswithme,andthemanyexpertswhodiscussedvar-
iousaspectsofnursinghomecarewithme.
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,MarielCroon, Dries van Danzig, Robert Eggink,Sjaak
van der Geest, Magdelena Hernas, Cees Hertogh, James Kennedy, Bert
Keizer,Cilia Linssen, Forough Nayeri, RoelinePasman, RissaPhilip,Ir-
eneSchenker,MarjanVerkerk,HendrikJandeVries,GerritvanderWal,
FonsvanWanroy,andofcourseOnnoZijlstra.
TheobservationsinParkHousewerepartofastudyofverstervencom-
missionedbytheDutchMinistryofHealth(VWS),theDutcheditionof
thebook,IndeWachtkamervandeDood:LevenenStervenmetDementiein
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
forScientificResearch(NWO).
IwouldliketothankRobertPoolfortranslatingthebookintoEnglish.
7

Preface
People living in care homes are probably the most vulnerable and least
powerfulindividualsinsociety.Beingdependantonsomeoneelseforall
your health, social and care needs can result in the individual being si-
lencedandmarginalised.
Despite a positive increase in research and practice interest focusing
on this area in attempts to provide more positive relationship centred
carepracticesgeneralunderstandingsandknowledgeofcarehomeprac-
ticesremainlimited.
Whatisessentialisthattheoftenverydifficultandsensitiveconcerns
inherentinprovidinginstitutional(andinstitutionalised)careresponses
to silenced and vulnerable people should be voiced, debated and given
priority.InDeath’sWaitingRoomisanaccessibleanddetailedaccountof
the experiences of residents, staff and relatives in a care home setting
especiallyinrelationtothecomplexissuesanddecisionsthatcomewith
thedyingprocess.
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
withtheselivedcomplexities inways thatarebothfascinatingandchal-
lenging. The reader is drawn into demanding and thought-provoking
questionsonurgentissuesforsocietyandforourownlives.
The book is an essential and stimulating read for all of us trying to
improvethelivesofresidents,relativesandstaffincarehomes.Itisnot
only about how to understand better the challenges to providing better
carebutalsohowtounderstandandimprovetheprocessesandpractices
ofsupportingagooddeath.
DrHeatherWilkinson ColmCunningham
CentreforResearchon DementiaServices
FamiliesandRelationshipsDementiaServices DevelopmentCentre
EdinburghUniversity UniversityofStirling
9