The question of how Willem was coping, alone in the big house, had come to concern many of those surrounding him. Over the past couple of months, Willem had been tired, and was showing up at the drop-in centre less and less. His daughter had called on others to help him to prepare warm meals. He himself talked of his drop-in centre friends’ waning capacities to go about daily life on their own. And in his own stories figured the house. The house that harboured many of his memories, and that he felt he had to protect against builders redoing the roof.
When the opportunity offered itself to stay with him at the house, I gratefully accepted it. My eagerness to learn more about how Willem managed daily life on his own, his daughter’s wish to have someone keeping an eye on the situation during her holidays, and Willem being okay with me being around had joined forces. Like my other seven key interlocutors, Willem was diagnosed with (early stage) Alzheimer’s disease and he lived alone. He had been telling me about what was involved in keeping up daily life in the face of memory loss for more than a year at this point, and we both somehow liked the idea of spending a longer stretch of time together. Yet I was also a little nervous. How to prevent us from breathing down each other’s necks too much? And how to learn about his life as lived alone from spending time together?
My solution to both questions had been affirmative at first: I decided we would just go through the days, doing things together. And so we did. We had a wonderful time covering lots of the city by foot, dropping by a wedding ceremony, dozing off before 4:30am, 7:00am and 4:00pm television, renting bicycles, embarking on a day-long cycling tour to visit the tennis club Willem had been forced to quit with the onset of his Alzheimer’s. We spent many hours cooking meals, and going through the joy and agony involved in narrating Willem’s life history together over late night dinners.
Yet all this did not prevent me from looking out for moments that would enable both of us to be on our own for a bit. Moments allowing us time to recover from all we had done during the day. Time which might give me an idea of what life would be like when we busied ourselves with our own projects.
One such a moment seemed to offer itself on our second day at Willem’s house. It was three o’clock in the afternoon and the sun was shining bright. We had only just returned from a long walk around the city centre. After an early start that morning (we had gotten up at 4:45am), our walk – we had had no clear plan of what to do – had left me tired. As Willem seemed proud taking out two immense lawn chairs onto what had once been a beautiful roof garden, I was happy to settle into one of them. I had brought a book and I looked forward to a moment of concentrated reading.
This did not seem how it was meant to be. Willem had taken off his shoes, sat looking at me for a moment, then disappeared inside again. He was now checking the garden hose, tracing it in and out of the small door, on and off to the sink on the landing. He threw me occasional brief glances while softly commenting on the hose. Since this went on for some minutes, I got up slowly and asked him whether I could give him a hand. Together we checked the tap. It seemed to me that a connection device (connecting the hose to the tap) was lacking, and we talked about other ways of watering the plants. Willem took me downstairs to look for a watering can. He found a sauerkraut dish instead and told me lots of stories about the precious moments it reminded him of. It seemed as though the moment of quiet reading was not going to happen.
Something similar happened during our last day together at Willem’s house. That day, we had agreed to go to the drop-in centre. While I knew Willem as someone well capable of hurrying up, this morning he did not seem up for it. After taking his morning shower, he had kept wandering around the house, slowly walking up and down the small alleys in his living room. A room packed with art, modern furniture and drying clothes. He was talking to himself. Afraid people would be waiting for us, I had kept myself busy preparing my own luggage, cleaning the kitchen and then sitting to the side. When I offered Willem my help, his faint frown broke into a smile. What was he looking for? I asked him. “This jacket!” he said, inferring that I was an ally who knew which jacket he meant, broadly gesturing and looking for words suitable to describe the garment.
A moment later we found ourselves browsing his clothes-scattered living room together. In addition to the Alzheimer’s, glaucoma had effected Willem’s eyesight. I walked alongside him, my body slightly turned towards him. I accompanied my words about what I saw with a hand pointing in the concerned direction. Was it the blue pullover over there, did he see it? Could he tell me more about the jacket he was looking for? Attempts to busy ourselves on our own had merged into being-together-one. Through the efforts of seeing and pointing I had offered my body to extend Willem’s project of finding a jacket in a house that was becoming increasingly obtrusive to this – and other – of his daily life projects.
Perhaps, I found myself pondering, doing things on one’s own was not quite the point for Willem at this period in his life. A period in which upholding daily life required an amount of effort that might have been too much to invest for one person alone. Similarly, life as lived alone may not have shown itself in the moments we busied ourselves with our own projects, but rather in the way Willem drew me into his whereabouts; by asking me to partake in engaging his memories, and to extend his daily life projects. Being together in this context was neither superfluous nor ‘too much’. It might have offered an opportunity for upholding life altogether.
Willem’s neighbour may have used a similar vocabulary to express it. She had seen that Willem looked happy during the days of our shared time at his house. She had seen it from the way he walked the neighbourhood. And from the way his energy levels had significantly dropped in the days after I left. Of course he liked having me around, this neighbour pondered. But that was not the point, she told me when I asked her to elaborate. It was the thing of going through life together. Of leaving behind for a while the tiredness of doing daily life on his own, she said. In a house he found increasingly difficult to handle.
It would be only a week after our shared weekend at his house that Willem’s daughter returned from her holidays. She told her father that there was a place available at the nursing home of their choice and that he would move there the next day. Much to his drop-in centre friends’ surprise, Willem swiftly agreed to all of the procedures necessary for him to live on a closed ward. When I dropped by to say goodbye, he told me he was “done with the house”.
Laura Vermeulen is a PhD candidate at the Long Term Care and Dementia research team at the University of Amsterdam. Her dissertation explores world-building processes as engaged in by community dwelling and single-living people with dementia in The Netherlands. Probing stillness, sociality and time in the everyday lives of her interlocutors, Laura discusses the withdrawal of everyday life worlds using phenomenological and philosophical approaches as a lens. Alongside her work on her dissertation Laura has conducted several projects in applied and collaborative anthropology. She recently finished a large-scale evaluation project on a care workers’ training programme funded by the Ministry of Health. Laura currently works at an academic learning lab, the Ben Sajetcentre. She is co-author of “Dementia and the good life. Collaborations with the field.” (Medical Anthropology Theory, February 6th, 2018) and of “Moments of collaboration: practicing relating differently in dialogue meetings.” (paper in progress).
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.
Pingback: Refraction of daily life | Somatosphere