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In Death's Waiting Room

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

Anne-Mei The
Copyright Date: 2008
Pages: 208
https://www.jstor.org/stable/j.ctt46n1rh
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  • Book Info
    In Death's Waiting Room
    Book Description:

    In Death's Waiting Room is a penetrating story about people suffering from dementia in a multi-cultural society, relevant to us all. Anne-Mei The carried out two years of ethnographic research in a nursing home in the Netherlands revealing what usually remains hidden from the public: the decision to stop treatment, the cultural and social gap between the Dutch occupants and the black Caribbean nursing staff, the communication problems with relatives, the tensions and aggression. But she also shares with us the touching and funny moments and experiences with the elderly occupants. This book also unravels "the Blauwborgje case" - which was the focus of much media attention in the Netherlands in the late 1990s - in which a nursing home refused to re-hydrate a man with extreme dementia because they considered his condition to be terminal, whilst his family disagreed and pressed charges for attempted murder. Anne-Mei The gives an account of the events that took place and also explores the wider relevance of the case. This title is available in the OAPEN Library - http://www.oapen.org.

    eISBN: 978-90-485-0107-6
    Subjects: Political Science, Sociology

Table of Contents

  1. Front Matter
    (pp. 1-4)
  2. Table of Contents
    (pp. 5-6)
  3. Acknowledgements
    (pp. 7-8)
  4. Preface
    (pp. 9-10)
    Heather Wilkinson and Colm Cunningham
  5. Introduction
    (pp. 11-14)

    This book tells a hidden story. It is a story that concerns us all, but one that we would rather not hear, about a subject we would rather not think about. It is the story of the life and death of old people with dementia. It is a topic that we try and avoid as long as we can, until we are confronted with it when a loved one is admitted to a nursing home. The story does emerge occasionally, however, when an incident reaches the mass media. That is what happened in the Netherlands in the summer of 1997,...

  6. How It All Started
    (pp. 15-18)

    ‘Have you read in the paper this morning about what’s been happening in the Blauwbörgje nursing home?’ my friend says when I answer the phone. She is a journalist with one of the national papers. If you have a minute I’ll tell you,’ she says. ‘I’d really like to know what you think. The relatives of a man with dementia have charged the nursing home of deliberately allowing him to dehydrate – not giving him enough to drink. They call itversterven. Apparently that’s their policy in cases like that.’

    ‘I’m not sure whether I can comment on that,’ I...

  7. Part I Park House

    • Life in Park House
      (pp. 21-26)

      The opening of Park House after the renovations was festive. The Friends of Park House Foundation, which counts prominent members of Dutch society among its members, organised things. The Mayor opened the new building officially in the presence of more than two hundred guests. The building had been decorated and preparations took days. During the ceremony the Mayor praised the nursing home. He would prefer to spend his own old age at home but, if he had to spend it in a nursing home, then this would be the one, he told the guests. There was smoked salmon and eel...

    • Mrs Van Dam Dies
      (pp. 27-30)

      Mrs van Dam moved to Park House in the spring. She is eighty-nine and used to live alone with her dog Cazemier. Her son-in-law didn’t like the dog and she knew that he would be put down as soon as she went into a nursing home. Rutger Varenkamp did everything in his power to get the dog admitted to Park House together with his owner. This included negotiations with everyone from the doggy-walk service to the director of Park House. ‘Everything was arranged,’ he says. ‘He was going to have a trial weekend, but then he was put down anyway.’...

    • The Family
      (pp. 31-36)

      The Donkers – husband and wife – shuffle down the corridor. They moved into Park House the previous day. Their son spent the whole weekend decorating their room. There are two armchairs and a table with a large television. There are paintings on the walls and on the noticeboard photos of the highlights of their life with children and grandchildren. During the introductory interview with the doctor and Femke, the son described how difficult the previous years had been: his mother ‘officially’ has dementia. His father is still mentally all right, but has difficulty keeping track of things. They both...

    • Eating Problems
      (pp. 37-39)

      During the multi-disciplinary consultation the discussion turns to Mrs Boshard. Carer Piet mentions that she is not eating well. He has mentioned this before, he says. She hardly eats because she doesn’t enjoy it. Piet suggested that it might taste better with a bit of salt, but she insisted that that isn’t the problem. Piet tasted the food, and had to agree with her: there was nothing wrong with the ingredients really, it just wasn’t very tasty. ‘Food is one of the few pleasures that the residents have,’ he says. ‘Why can’t they have some choice as to what they...

    • Staff Vicissitudes
      (pp. 40-45)

      Darah enters Anna van Raalten’s office. ‘I’m all alone on C. Can you give me a hand?’ The Surinamese carer is in her mid-forties. She is wearing a white nurse’s uniform and white clogs. She has a broad yellow and red striped scarf covering her frizzy hair. Due to staff shortages Van Raalten, a nurse by training, sometimes helps out. I sit at the meeting table and write notes. Anna van Raalten stands up and gestures me to accompany them. We follow Darah to unit C, where the mid-stage Alzheimer’s residents are housed.

      In one of the triple rooms Mrs...

    • Mrs Scharloo Doesn’t Want To Go On
      (pp. 46-54)

      Mrs Scharloo is the Surinamese lady who was brought to the nursing home without anyone telling her where she was going. For weeks she is the major topic of discussion during the multi-disciplinary consultation.

      ‘Mrs Scharloo is eating a bit better now,’ says Darah during one of these meetings. ‘But you have to keep an eye on her, because as soon as you turn your back she spits it out again. Or she empties her plate behind the radiator.’

      ‘It’s something between her ears,’ sighs Rutger Varenkamp. ‘There’s no physical cause. We’ve looked at absolutely everything.’

      ‘Yesterday she was in...

    • Daily Care
      (pp. 55-62)

      One morning Anna van Raalten accosts me: ‘It’s really busy today and Sylvia has twelve residents to get out of bed. Can you give a hand?’ When I get to the unit I find Sylvia, Rutger Varenkamp and a medical student there. They are all washing and dressing residents. Sylvia accompanies me to Mrs Melkman’s room and explains what I have to do: ‘She wears a bra, a shirt and an inco. You have to apply this ointment to the lesions on her buttocks as well. She can wash herself, though.’

      Mrs Melkman is not in her room. I find...

    • Everyday Life
      (pp. 63-70)

      The residents spend most of the day in the living room. They stare and sway to the music, which plays continuously. Sometimes they chat. Rutger Varenkamp brings in magazines that he finds abandoned in the train, but the residents never read. The staff make good use of them, though. Not much happens in the living room during the day, and it is the carers who walk around and chat and laugh.

      In the mornings when the residents have been washed they are seated at the table for breakfast. They remain there most of the day. They wait – consciously or...

    • Inadequate Care
      (pp. 71-76)

      Rutger Varenkamp stands red-faced in Mrs Driessen’s room. He has been called out of the communication course organised by the director. Mrs Driessen moans and is not responsive. She is diabetic and has hypoglycaemia. The doctor wants to give her a glucose injection and needs alcohol to disinfect the skin. Colette is the only carer present who is qualified to assist the doctor. She runs up and down looking for some alcohol. There are a lot of small bottles in the cupboards, but no alcohol.

      Rosalie had a fright. She found Mrs Driessen having convulsions in bed. The 50-year-old Surinamese...

    • Versterven
      (pp. 77-83)

      I’m having lunch with Rutger Varenkamp in the Restaurant. He talks about residents he thinks will die soon. One of them is the 96-year-old Mrs Bakker. She has had a few bad falls recently. Varenkamp could extend her life by strapping her to a chair and feeding her through a tube. But in consultation with her daughter he has decided not to do that. The daughter thinks that her mother has already been deprived of too much. If she were to be restrained then she would loose the last bit of freedom she has. This means that they accept the...

    • Wanting to Die
      (pp. 84-90)

      Darah comes into the room looking shocked and tells me that the daughter of Mrs Wijntak has died. She didn’t feel well and called the GP. A bit of flu, the doctor said. She didn’t improve, though, and phoned her sister. When the sister arrived her hands were already cold and blue. She phoned the emergency number, but it was already too late.

      They told Mrs Wijntak on Sunday, but it seems that it only got through to her yesterday. She started screaming and shouting. She fell onto the bed and tore off her clothes. She was so heartbroken that...

    • Rough Treatment
      (pp. 91-100)

      Loud shouting erupts from the living room. Mrs Walker has taken a bottle of water from the fridge and won’t give it to the dietician. ‘It’s mine, do you hear. Buzz off! Be careful or I’ll call my father.’ The diminutive woman holds the plastic bottle close. ‘Give it to me Mrs Walker. That bottle is supposed to remain in the fridge.’ Carer Justine comes out of one of the bedrooms and calls to Mrs Walker: ‘Hey, Auntie Miek, what’s the problem?’

      ‘Everyone leaves their rubbish lying around. I say: turn the light off first; don’t leave it on.’ Mrs...

    • Reorganisation and Black Magic
      (pp. 101-112)

      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 surprised 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 evening. If they play this kind of music on other days they get told: ‘Is that your choice or that of...

    • Leontien and Mrs Grasberg
      (pp. 113-118)

      ‘How am I ever going to get through the day?’ Anna van Raalten sighs as I enter her office. ‘What a morning. And that’s without Mrs White, who has just died.’

      ‘Has something happened?’ I ask.

      She nods and traces circles on her blotter. After a while, without looking at me, she says: ‘Leontien spat in Mrs Grasberg’s face yesterday.’

      Ten minutes later, when I walk into the department, everyone is talking about the incident.

      ‘Leontien is overwrought,’ says Colette, clearly affected. She is the care coordinator of Leontien’s unit. ‘It’s all become too much for her, but this is...

    • Strong Women, Loafing Men
      (pp. 119-125)

      The incident between Leontien and Mrs Grasberg ends up in court and Leontien is sacked. Christa reports sick with a back problem and doesn’t return to work for a number of weeks. Then she goes to Surinam on extended leave. She is hardly mentioned and the attention shifts to Justine, who Christa had informed about the incident and who had reported it to the care manager. She is ostracised by the Surinamese community in the nursing home and totally ignored. One doesn’t betray a compatriot.

      Justine is seriously affected by the response. She never imagined that her warning to Anna...

    • Limited Labour Market
      (pp. 126-130)

      Because the labour market is so limited, ‘poor quality’ staff have to be employed, says Colette. By poor quality she means that they just work for the money, are not interested in the residents, and as a result have high rates of absenteeism. You can see that clearly, she says. For example when the residents have to be washed and dressed. ‘That is an intimate business,’ says Colette. ‘It’s not just anyone who sees you naked.’ When Colette cares for residents she tells them what she is going to do: take off your nightdress, wash you, etcetera. Sometimes she sings....

    • The Big Problem
      (pp. 131-136)

      ‘The big problem in this nursing home?’ interim manager Roderik Franssen says, repeating my question. He pushes a flask of coffee towards me. To begin with, he says, everything in a nursing home is aimed at optimising the care product. In this home that isn’t the case. There are separate ‘islands’ of activity and little communication between them. At least, that’s what it looks like. Moreover, he continues, the care ‘doesn’t really run smoothly’. Franssen mentions the huge staffing problem. Then there is 15 per cent absenteeism and the ‘herds of temps’. When he started reorganising they had spent almost...

    • The Coup and the Death of Mrs Driessen
      (pp. 137-146)

      ‘It’s Rutger Varenkamp from Park House here,’ the voice says when I pick up the phone. ‘I just thought I’d call. Have you heard about what’s going on here?’

      I’ve been away from the nursing home for three weeks and haven’t heard.

      ‘Have you heard what happened to Anna?’ he continues in an excited voice. ‘She’s received a letter, signed by most of the staff on De Stadhouder, in which they announce that they no longer want to work with her. When she received it she immediately took sick leave. How she’s doing? Well, as you can probably imagine, not...

  8. Part II The Blauwbörgje Case

    • The Nursing Home Doctor’s Husband
      (pp. 149-154)

      In the train I am reading a letter published in theJournal of Nursing Home Medicine. It is written by the doctor at the centre of the ‘Blauwbörgje case’:

      Because so many colleagues, throughout the country, have been so supportive during the accusations against Blauwbörgje nursing home, I would like to report on the legal procedure. (…)

      In July 1997 a patient was transferred to us from the hospital (…) with advanced dementia and a chronic infection. The hospital had decided not to intervene radically, given the condition of the patient. He was treated conservatively with antibiotics. His wife reported...

    • The Ex-wife
      (pp. 155-159)

      I also wrote to Mr Bruggeling’s ex-wife, Mrs Koster, and her daughter Yvonne Bruggeling, asking if they would be willing to talk to me. ‘My daughter works and has a son, so she is busy, but I have time,’ says Mrs Koster when I phone her. A week later it is a neat woman in her late fifties who opens the front door. She starts talking immediately. ‘What happened is really unbelievable,’ she says. She ‘can’t find the words’ to tell me, even now after all this time. And just imagine, her husband is still alive, after almost four years!...

    • The Nursing Home Doctor
      (pp. 160-164)

      I read and re-read the documents that Maarten has given me. There are newspaper cuttings with sentences underlined by Liset Moorman. There are cards and letters from friends and strangers who express their sympathy. There are letters from lawyers, copies of documents from medical records, and police statements.

      On Tuesday 29 July 1997, at about 10:40, I, JANSSEN, PETER KAREL, Brigadier of the Regional Police Force of Groningen, took the following statement from the accused, MOORMAN, LISETTE HENRIETTE, born 15 April 1951, in Groningen, at the Central Police Station, Groningen. (…)

      I am a doctor working at the Blauwbörgje nursing...

    • The Colleague of the Nursing Home Doctor
      (pp. 165-172)

      Nursing home doctor Tom van Bokhoven phones back five minutes after I have left a voicemail message. He is keen to speak to me. He shared an office with Liset at Blauwbörgje for fifteen years and discussed the Bruggeling case with her intensively. He saw Mr Bruggeling when Liset was on holiday. He also knew him from earlier periods that he had spent in the nursing home. He is free next week and has plenty of time to meet me and discuss things.

      A few days later we meet in the modern house that he and his wife have built...

    • The Daughter
      (pp. 173-176)

      It proves difficult making an appointment with Yvonne Bruggeling. Her family and her work take up all her time. When we have finally agreed a date, she cancels. And when she opens the door for our next appointment her hand shoots up to her mouth. She forgot; she is expecting visitors. A blonde woman in her early forties, Yvonne Bruggeling looks me straight in the eye each time I ask a question. She thinks before formulating her answers. She sounds concerned about her father and becomes emotional several times during the interview. We talk for threequarters of an hour, then...

    • The Managers
      (pp. 177-180)

      Sofie van der Kamp, head of the nursing service at Blauwbörgje at the time of the Bruggeling affair, isn’t sure whether it is a good idea to talk to me about the case. Maarten Moorman said that it was okay, she says, but a lot has happened. And she no longer works in Blauwbörgje. She asks whether the current management knows that I am doing this project. No? That seems like the appropriate route to her. She says that the director at the time is no longer there, but I could phone Frank Verkerk. At the time he was the...

    • The Internist
      (pp. 181-183)

      Internist John Meijers e-mails in response to my letter, saying it would be an honour to speak to me. He is the doctor who admitted Mr Bruggeling to hospital and announced that the family had saved him from certain death. We meet a few days later in his office in the hospital. As he warned me at the start, his pager keeps beeping: he is on call.

      John Meijers remembers being called by the GP, who said that there was a man in Blauwbörgje who was dying and that his family didn’t want him to die. ‘Maybe it’s a strange...

    • The Head Nurse
      (pp. 184-187)

      Carer Ans Vroom worked regularly in the week that Mr Bruggeling was in Blauwbörgje. She was the one the family had accused of saying that Mr Bruggeling was being dehydrated (versterven). When I ask her she says she can’t imagine ever having used that word, because, she says, the word didn’t even exist. Ans Vroom remembers that Yvonne Bruggeling asked why her father did not have a fluid drip. She had answered that she was going to discuss this later that day with the doctor, who would make the final decision. Yvonne Bruggeling said that she was alert because the...

    • The Journalist
      (pp. 188-190)

      Journalist Mark van Driel wrote the article with the title ‘Mr Bruggeling enjoys a meal of spinach and custard,’ that both the widower of Liset Moorman and her colleague Ton van Bokhoven had referred to. Van Driel hesitates when I call him. What kind of book am I writing exactly? When was the Bruggeling case? It was a long time ago. He isn’t a specialist in healthcare issues. He’s also moved to another paper. Finally he agrees to see me. He won’t talk about the actual case, he warns, but about how things work in a newspaper office. We arrange...

    • Mr Bruggeling
      (pp. 191-192)

      The De Merenberg nursing home is situated in a village twenty kilometres from the city of Groningen. Mrs Koster phoned ahead to inform the home of our arrival. When we arrive, Mr Bruggeling is in a wheelchair in the living room. His hair is wet and combed back from his forehead. He is as thin as a rake, with large eyes that stare straight ahead. Mrs Koster kisses him a few times. She greets the carers warmly and ushers me in the direction of a woman with short blonde hair. ‘She’s the boss here,’ she says. ‘You can ask her...

    • The Doctors at De Merenberg
      (pp. 193-196)

      The director of De Merenberg still remembers my letter. Unfortunately he doesn’t have time for a meeting: the summer holidays have arrived again. He agrees that I can speak to the doctors and carers. He will inform Erik Vroom, the head of medical services, of my plans.

      Erik Vroom proposes that I put all my questions to him first, and if he can’t answer them then he will ask Mr Bruggeling’s doctor, José van Spiegel, to join us. After half an hour he calls her and a few minutes later she hurries into the office pushing a trolley full of...

    • The Researcher
      (pp. 197-201)

      The Blauwbörgje question intrigued me from the moment that the journalist phoned me and asked for my views. What was the whole affair about? Was it really aboutversterven? Why did it all go so wrong? Because it all did go very wrong.

      Things went wrong in the nursing home: Mr Bruggeling’s family transferred him to a hospital against the wishes of the doctors and charged the nursing home with attempted murder. Things also went wrong outside the nursing home. The initial media response had been negative toward the nursing home, but the case developed a life of its own,...

  9. How It All Ended
    (pp. 202-202)

    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....

  10. Notes
    (pp. 203-203)