The sun wakes her up. But Mrs Wijngaard keeps her eyes closed. She is 90 years old and sits quietly in her armchair in her apartment in the nursing home. And lets her thoughts wander. For three months she has been living here now, in an apartment with a living room, one bedroom, private bathroom and a kitchen corner. She looks out the window. A lot of green and a small pond with birds. A nice view. Her apartment looks quite spacious, yet it’s half the size of her old house. A lot of her things she had to leave behind. The little cabinet, and her bed, in which she had slept with her husband since they had married. And the years after he had died. The building is quite new, it smells fresh. She is being taken care of quite well. The food is quite ok. She sighs. She really wants to feel grateful, but instead she feels sad. “Never move old trees” – that’s what they say. For the first time now she feels what that means. It’s such a change. And it happened so fast. Mary and the other children talked with her about her moving to a nursing home, and suddenly it had to happen within a week. She doesn’t remember a lot of things from that week. Suddenly, there she was, in her new apartment in the nursing home. She can see her old house from here, but that seems unreal: it feels miles away.

In her old house she had lived for 18 years with her husband Martin. He had died seven years ago, after 56 years of marriage. She loved him very much and still misses him. Fortunately her five children are still around. They stop by a lot and sometimes take her to their homes for a visit. She does miss her neighbours. On quiet days she always knocked on their doors for a chat, or to play cards. Then things changed after Martin died. Her body started acting strangely. Her hands started shaking. She stood by the counter in the supermarket with her wallet in her hand and suddenly didn’t know what to do anymore. Then her children started to visit more often. Little by little they took over the household, since she couldn’t manage it anymore. Mary, her oldest daughter, did so much for her. Groceries, cleaning, cooking, arranging the medication, she did it all. With a company and a household of her own to run. The hospital, a scan, that word: Parkinson’s. Then home care. Nurses Stella, and Karin, and the sweet Evie came to visit her every day. Such dears. She remembers having a bad day once, with her husband on her mind constantly, and Evie took the time to sit with her, she put an arm around her. It made my day, she remembers. Now she does smile. She dozes off in her old memories.

Sound wakes her up. The three quick knocks on the door, followed by “Hellooooo! Good morning! Your breakfast!” In comes Angela, one of the nurses. “Good morning”, Mrs Wijngaard replies, trying her best to sound perky. The nurse walks in with a fast pace, puts the tray on the table, and turns towards Mrs Wijngaard. “There. Shall I help you to go and sit at your table?” Before Mrs Wijngaard has answered, Angela stands before her, grabs her hands and says “Oooone, twoooooo…” Mrs Wijngaard tries her best. She is always so stiff in the morning from the Parkinson’s. Yet one cannot tell. Even when she looks in the mirror herself, she sees a sturdy old lady with wavy grey hair. Not a hunching, wobbling, shaking old person. Her appearance even fools the nurses. “You look so good today!” they often call out to her. If only they knew.

She gives it a try, and manages to lift her body. She stands. “See, I knew you could do it! You succeed every day, right?” Mrs Wijngaard gives her a quick smile. Angela walks her to the table and lets her sit on her usual chair. “There”, Angela says. She moves the tray towards her. “Are you sure you still want to eat here, in your room?” Here we go again. “Won’t you try to eat in the living room once? It’s very nice there. You can meet the other residents, have a little chat. I am sure you will enjoy their company!” Angela looks at Mrs Wijngaard with a hopeful look in her eyes. Mary has explained to the nurses a couple of times already why Mr Wijngaard prefers to stay in her room. She feels that her Parkinson’s medication makes her tongue go weird, makes her speech slurred. She feels ashamed and would rather avoid eating with others. But they keep on asking her. And it becomes harder and harder to say no. She doesn’t want to be difficult. Almost every day she has to be the unwilling resident and say no, thank you. Recently she discovered that “Yes, I might do so in a while”, appeared to be a more satisfactory answer. So now every time she uses this or a similar phrasing. But they keep on asking her.

Mrs Wijngaard knows why. They know she feels lonely. She is reluctant to say that to the nurses though. She worries they would think she is ungrateful for their care. But Mary has noticed it. Of course she noticed. And told head nurse Linda about it. Perhaps they could help her a little? She knows that Mary was referring to Stella, Karin and Evie, the home care nurses who sat beside her on her bed, and put an arm around her shoulders. But Linda suggested something else: “Why don’t you try the cooking club?” Mrs Wijngaard thought of her slurred speech, and her hands refusing to peel the potatoes, the other residents giving her looks. The thought of social encounters made Mrs Wijngaard nervous. “Well, yes, maybe”, she had replied. “Or how about a psychologist or social worker, or a pastor, who could come and talk to you?” A psychologist? I’m not ill. Or am I? A pastor… haven’t seen one in ages. Mary thanked them for their kind suggestions, she said she would discuss it with her mother.

Mrs Wijngaard saw that Mary hesitated to just ask for more attention for her. She seemed nervous when talking to the nurses. Mrs Wijngaard knew why. The nurses didn’t like her. Mary often gave them care suggestions and asked them for checkups. Mrs Wijngaard felt that they had also started to dislike her, as she often did not follow their suggestions – to eat in the living room, for example. Sometimes she thought about giving in and going to the cooking club, just to show Linda that she was a kind and grateful person. But then Mary reminded her to only do something if she felt like it. She asked Linda if they could arrange for her mother to have coffee with Mrs Vermeer, a former neighbour who lived on the ward as well. Ah, Mary knew her mother oh so well. But Linda had replied: “It’s not our job unfortunately to build a social network for someone. That has to be taken care of by people themselves or their family. How about a volunteer? They could take her for a walk?” Mrs Wijngaard thought about her tight medication schedule. When going for a walk, she would certainly forget to take her afternoon pills. Mary had read her thoughts and expressed her doubts to Linda. She could see Linda slowly losing her patience, and intending to finish the conversation. Nothing would change.

Mary made one final attempt to ask the nurses to give more attention to her mother. She said that Mrs Wijngaard didn’t eat well. Linda seemed to engage with this problem, and she suggested a range of possible alternatives. If bread is a problem, then how about porridge? Or yoghurt with fruits? Oh no, please no porridge, Mrs Wijngaard thought. And yoghurt made her nauseous. “How would you feel about that, Mrs Wijngaard?” Mrs Wijngaard froze. What could be the correct answer? “Erm, well, porridge, I made that a lot for my children when they were young!” she replied.

“Well, shall I take you to the living room this afternoon?” Looking at her from close by, Angela waited expectantly for the answer. Mrs Wijngaard said her phrase: “Not today I think, thank you. But perhaps in a while”. Angela sighed loudly, clearly dissatisfied with her reply. “Okay, if that’s what you want. You’re in control here.” Angela left. I’m in control? It’s rather the contrary, Mrs Wijngaard thought.

This is it then. This is what it’s like. The final station[1].

[1] According to a Dutch proverb, the nursing home is the ‘final train station’ on the ride of life.

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Susanne van den Buuse is a PhD candidate in the Long-Term Care and Dementia Partnership at the Department of Anthropology of the University of Amsterdam. The topic of her dissertation is the concept self-reliance and how this affects nursing home care in The Netherlands. Susanne currently works as researcher and project manager at the Dutch Alzheimer Foundation.

This post is a contribution to ‘Daily life’ in the Somatosphere series ‘Thinking with dementia.’

Read the next story in the series here. 

Read the refraction of the theme here.