Science, Medicine, and Anthropology
One rainy morning in November, I called my mother.
“Hi mum, how’re you doing?”
“Well, it isn’t much fun to be sitting here in a chicken run all day long. They’ve even stretched the mesh right along the sideboard.”
I picture my mother, who had been immobile for years, seated in her blue-painted wicker chair next to the window. Within reach, the landline on the sideboard that appears to have chicken wire alongside it. It doesn’t take much effort to conjure up the image of the backroom as a henhouse – in my childhood it frequently served as a kennel, rabbit coop or canary cage. So there’s nothing new about the meshing along the sideboard. But that was then – decades ago.
Sadly, I do not recall my response to the news of her confinement in a chicken run that particular November morning. What I do remember clearly is that this was when it struck me that something was seriously wrong. ‘Something’ turned out to be Lewy body dementia; the chicken run a symptomatic delusion.
I had noticed though, in the preceding months, that my mother had been struggling ever more to reach the end of a sentence. She had always loved to tell us anecdotes and had a keen sense for plot and punch line. Now, she would begin her stories, inwardly chuckling, but, getting lost in the twists and turns – like her listeners – she would invariably end up sighing: Oh well, never mind.
At first, such muddled narrative politics led to the typical responses of irritation or a quickly mobilised patience that characterised the relation between my mother and her daughters. We were used to navigating the structural chaos that marked our domestic sphere, and which was masked by humour and resignation.
Oh well, never mind.
Just stack away the mess in a cupboard and shut the door firmly.
Right, that’s done then.
Later, we’ll see.
So when the geriatric specialist somewhat triumphantly showed us the evidence that supported his diagnosis, it was as if he were exposing a family secret. Unasked for, the lid to Pandora’s box came off. All the mess that had been safely stacked in the cupboard came tumbling out, startling all of us who were present. Like a magician who cruelly pulls out the rabbit by its ears for the umpteenth time, the specialist flourished a piece of paper bearing the rough outlines of a clock. His eyes spoke volumes: look how your mother has flunked this assignment. The hands of the clock had ended up in the top right hand corner, but the clock face was somewhere in the middle. If that wasn’t Lewy body dementia…
My mother just sat there as if she had nothing to do with it.
So what…? I thought. What do I care?
Never an orderly person anyway, my mother couldn’t care less about a clock and its hands… and anyway, she’d never been good at drawing…
So what’s your point?
The doctor suggested she should be on medication to suppress the delusions. That didn’t seem such a bad idea, since it was increasingly bothering my mother that my father did not see what she was seeing. Our long-deceased dogs, for example, romping about in our front garden every day. She’d point this out happily to my father, who insisted on telling her it was just a bunch of sticks.
“And I don’t like that.”
“You’d rather he also saw the dogs?”
“Yes.”
And though this was clearly a delusion, squabbling about whether something was a bunch of sticks or a pack of dogs wasn’t so novel when it came to communication within our family. In the competition for the defining power, she usually drew the short straw anyway. So at first, her delusions looked like a way of getting around that problem, just as her particular sense of humour was in fact a lifelong strategy to seek refuge in the grotesque or the absurd.
Still, it became increasingly difficult to reconcile the different ways my parents experienced reality. In the end it was decided to arrange for her to go to a day care centre.
“I’ll be going to nursery school again.”
“Oh, are you? Looking forward to it?”
“Yes. Though I’ve run out of T-shirts.”
Happy to contribute to her well-being with what appeared to be a clearly defined task, I ordered her a pack of nice blue T-shirts. A year later, after her death, I was cleaning up the house and stumbled upon 50 brand new T-shirts. Most of them still sealed in their plastic wrapping.
It was a nice centre and my mother liked the colourful entourage of her highly interesting, blundering classmates. With the grotesque so easily there for the taking, she recovered her ability to tell us the stories of her experiences. Effortlessly, she created well-structured narratives about the daily events. Just like before. The man who crossed large distances at high speed throughout the building but couldn’t be found at mealtimes, the angry woman who hailed from Indonesia and unabashedly and without letting up kept grumbling all day long, the carer who varnished my mother’s nails and lent her books – time and again, they figured as clearly identifiable characters in her short, coherent anecdotes.
After joining the so-called nursery school, it was as if my mother had language, grammar and vocabulary at her disposal once more. Boundlessness and immediacy were the norm. Fiction or fact? Hollow concepts. Her classmates were all living their preverbal delusions, they all had inimitable obsessions and fears, and their unvarnished ineptitudes were on display. My mother recognised the resulting behaviour, because it was what she had always had to cover up and laugh away. The kind of behaviour that she could only channel in daily life by creating a home full of animals. Embracing Virginia Woolf’s mantra that there’s more truth in fiction than in fact, she wrote stories about that home, with the animals consistently providing the narrative point of view. Better than anyone else, these animals understood this funny old world of humans.
So in the end, in an environment where imagination toppled convention, the natural narrator she was found a home again.
Rosemarie Buikema is professor of Art, Culture and Diversity at Utrecht University and academic director and curator of the digital Museum Of Equality and Difference (MOED.online). She has published widely on the role of the arts in processes of political transitions. Among her latest publications are Revoltes in Cultural Critique (Rowman and Littlefied International, 2020) and Doing Gender in Media, Art and Culture (Routledge 2018). She recently co-curated the exhibition What is Left Unseen for Centraal Museum Utrecht together with the MOEDteam members.
This post is a contribution to ‘The Stories Continue’ in the Somatosphere series ‘Thinking with dementia’.