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TitleIn Death's Waiting Room: Living and Dying with Dementia in a Multicultural Society (Amsterdam University Press - Care and Welfare Series)
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LanguageEnglish
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Page 1

In Death’s
Waiting Room
Living and Dying with Dementia in a Multicultural Society

care &
welfare

A         U          P    A         U          P    

Anne-Mei The

Th
e

In D
eath’s W

aiting Room
care &
w

elfare

care &
welfare

The number of those with dementia is increasing in Western countries and
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
nursing home in the Netherlands and reveals what usually remains hidden:
the decisions to terminate treatment, the poverty and voodoo rituals of the
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.

Anne-Mei The is a senior researcher in the
Department of Contemporary History at the
University of Amsterdam, Director of the Institute for
Communication and Cooperation in Care (ICISZ), and
co-founder of Martha Flora Homes, a chain of private
nursing homes.

www.aup.nl

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

AUP_The_def.indd 1 05-03-2008 12:58:30

Page 2

In Death’s Waiting Room

Page 102

Reorganisation and Black Magic

Quarrels

Care manager Anna van Raalten doesn’t work on Fridays and weekends.
The first time I go to the nursing home on one of those days I am sur-
prised by the very different atmosphere. As I come out of the lift I hear
Marco Borsato [a Dutch crooner] blaring from the living room.

‘It’s very jolly in here,’ I say. Colette gives me a meaningful look. She
says that everyone is always in a good mood from Friday to Monday eve-
ning. If they play this kind of music on other days they get told: ‘Is that
your choice or that of the residents?’ Mrs Boshard and Mrs Keizer are
smoking in the living room. No one seems to mind the music.

In the coffee break in the restaurant I hear about the tense relation-
ship and the conflicts between the carers and Anna van Raalten. This
week things blew up. During an argument Femke threw a tray full of
cups on the ground. She shouldn’t have done that, she now says, but
she was so angry and felt so powerless and it all happened before she
realised what she was doing. She feels that her supervisor treats her like
a small child: ‘It’s as though we can do nothing right.’

Femke has her resignation letter in her pocket. After coffee she drops
it off at personnel, but they refuse to accept it. They suggest an immedi-
ate meeting between Femke and Marco Burgers, Anna van Raalten’s line
manager, and then a meeting next week between Anna and Femke.
Femke agrees. She doesn’t really want to resign. She has worked in Park
House for fifteen years and has been happy here. She just doesn’t want
to work like this any more.

Femke is not the only one with complaints about the care manager.
The carers call Van Raalten ‘hard’ and say that she never has much inter-
est in the ‘person behind the carer’. Most complaints are about the way
she speaks to staff, or rather reprimands them. Darah says that a few
days ago she was with the chiropodist, who comes once a month to do
the residents’ feet. If she has time left she also does the carers’ feet, for a
fee. Darah had just taken off her shoes when Van Raalten walked past.
Darah was summoned into her office and there Van Raalten exploded.
Did Darah think it was normal to have a pedicure during working hours
when they chiropodist was supposed to be looking after the residents’
feet? Darah was shocked. She thought the response was unjustified. She
was very upset, she says, because she often works longer hours than she
is paid. She had done all her work and had gone to the chiropodist fif-
teen minutes before the end of her shift. ‘It’s not that bad, is it?’ she
asks, indignantly. ‘I felt humiliated by the way she called me into her
office and lectured to me.’

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Page 103

The carers are irritated by the fact that their care manager never says
‘thank you’, says social worker Dina Vogel. She is Surinamese and also
the ombudsperson for many of the Surinamese carers. The carers com-
plain that their superiors are constantly commenting on mistakes but
never see all the things they do well. Dina Vogel thinks this is foolish
because it means that carers lose interest in making an extra effort and
are more likely to report sick.

Dina Vogel thinks that the incident with Darah and the pedicure was
‘terribly silly and short sighted’. Darah has worked in the nursing home
for many years. She often works late and is always prepared to do over-
time, even though she is a single mother. ‘That should be appreciated,’
says Vogel. ‘You don’t summon someone like that into your office and
lecture them as though they were a child.’

In the afternoon the living room in unit C is very busy. The laughter
and chatter of the carers can be heard at the other end of the corridor. As
is often the case, all the carers present are Surinamese or Antillean. They
are gathered in the kitchen off the living room.

‘And you know why she always wants to sit on the spin-dryer?’ I hear
someone say as I enter. ‘No? It’s because it loosens the turds!’ Laughter.
‘It’s true, just ask her. She says so herself!’ The carers slap their thighs as
they laugh.

The residents sit around the living room table with coffee. They look
around and don’t say much. Only Mrs Goslinga responds to the laughter
of the carers with a smile. When Christa sees me she comes across.
‘There you are. I brought you some peanut sauce but I haven’t seen you
all week. When are you in again? I’ll bring you some more.’

Darah slams a game of Ludo on the table. ‘Come on, go and join the
residents,’ she urges her colleagues. ‘And play with them, not with each
other.’

Carer Justine comes into the living room and claps: ‘Ladies, ladies,
what a mess! Do you call that tidying up? The cutlery should be in the
drawer.’

‘There she goes again,’ the carers say in unison.
‘I’m allowed to comment, aren’t I? You could do the same to me if I

didn’t do what I was supposed to.’ Justine points to herself: ‘A bit of
respect, please, for an older woman.’

When I move away from the table they call: ‘We haven’t shocked you
have we? You’re not leaving because of us?’

I laugh and hear Christa say: ‘Don’t worry, she’s always coming and
going.’

Community service for the director

In Park House there is dissatisfaction with the director. He is the third in
the last five years. ‘They actually managed to appoint a catering entrepre-

102 park house

Page 203

How It All Ended

Coming and going

One day I bump into Max Hermann, the Park House psychologist. He is
still working at Park House and tells me about the latest developments.
The merger that Westerlaken & Partners tried to bring about fell through
at the last moment. They did manage to appoint a new director, though.
Initially it seemed that they had made a good choice, but the tensions
between him and the management team are increasing. He seems to be
fully occupied with a new merger and as a result is not available for daily
management issues. There are rumours that he is planning to leave.

Staff continue to leave. Rutger Varenkamp, Femke, Dina Vogel and
Michiel Groothof have all left. Bob Eelman’s health has made it impossi-
ble for him to continue and Colette is on sick leave. Anna van Raalten
did not return after her sick leave. Two of the newer care managers have
already left – one of them was sacked. ‘She was even stricter than her
predecessors, but then she was from South Africa,’ Max says, laughing.
‘The carers called her “the warder”.’

The work burden in Park House has increased. There are increasing
numbers of untrained assistants replacing trained carers. The supply of
trained staff on the labour market has increased, but in Park House they
haven’t noticed this because the dire financial situation of the nursing
home means that staff that leave are not being replaced. So the pressure
on the permanent, trained staff has only increased.

When I was in Park House I often wondered whether I had chosen a
time of extremes, but it now seems that that was the normal state of
affairs. The psychologist confirms this: ‘There were all kinds of things
happening when you came and they continued to happen after you left.
Things are always extreme.’

I visit Park House occasionally and keep in touch with some of those I
met there. When I visit the humanist counsellor Rosan Hüsken in the
nursing home just before completing the Dutch edition of this book, she
proudly shows me the new ‘silence centre’. With paint and curtains from
a cheap shop and second-hand chairs they have created a wonderful ser-
ene space where residents, family and staff can retreat.

On a lectern there is a commemorative book. I open it and read the
calligraphic names of those who have died. Almost all the residents I
knew are there. Mrs Bloem, Mrs Melkman, Mrs Walker, Mrs Carpentier,
Mrs Prins, Henk Ruiter. I see them in my imagination, shuffling down
the corridor or sitting in their chairs.

202

Page 204

Notes

1. Roeline Pasman (2004). Forgoing artificial nutrition and hydration in nursing
home patients with dementia. Decision-making, clinical course, and quality of
dying. PhD dissertation, Amsterdam Free University Medical centre.

2. Peter Kloos (1981). Culturele Antropologie. Assen: Van Gorcum.
3. Robert Pool (2000). Negotiating a Good Death: Euthanasia in The Nether-

lands. New York: Haworth.
4. This discussion of the term versterven is based on Robert Pool (2004),

‘You’re not going to dehydrate mom, are you? Euthanasia, versterving and
good death in the Netherlands.’ Social Science and Medicine 58 (5): 955-966.

5. People of mixed Dutch-Indonesian descent.
6. A secular equivalent of the pastor and the priest.
7. She is referring to the prostitutes who sit behind large windows in the red

light district in Amsterdam.
8. ‘Euthanasia declaration’ is a literal translation of the Dutch euthanasieverkla-

ring, and is used here rather than ‘living will’ or ‘advance directive’ as these
terms (for which there are also Dutch equivalents (levenstestament and niet-
reanimeerverklaring) do not refer to euthanasia.

9. Winti is a form of traditional religion with West African roots, similar to
voodoo, that is practiced in Surinam.

10. Bert Keizer (1994). Het refrein is Hein. This has been translated into English
as Dancing with Mr D. (1997).

203

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