Literatures of dementia, Alzheimer’s Disease and lost memories.
Writing Forgetting, Departmental Seminar, English Literary Studies, University of Cape Town. 7 August 2024. Archive of forgetfulness.
When I finished school, my parents moved from a mining town outside Johannesburg to the coast where we had gone for family holidays, over a thousand kilometres away. My father wanted to leave his old life behind. He got rid of almost all our possessions and bought a flat – the unit, he would always call it – in a new housing complex. He and my mother made the long drive down in separate vehicles. She had once owned a mustard-yellow Ford Escort, but that had gone too. They convoyed south in two company cars that my father had lovingly cared for and then bought from the mine, two grey Audis.
They drove across the Highveld and the Free State, across the Karoos great and small, through the Swartberg and over the Outeniquas. South to a new life, caught up in the transitions of the 1990s. Except that, several times towards the end of the journey, they became separated on the roads. My father looked in the rear-view mirror and my mother was no longer there. Or maybe it was dark and he assumed that the headlights behind him were those of his wife when in fact she was lost. She had taken a wrong turn somewhere in the winding poorts and passes that deliver you from the interior to the coast. My father backtracked and found her eventually, disorientated and tearful in the George traffic department, or maybe it was Wilderness.
She put it down to the stress of the move, the long drive. But looking back, it must have been – like the muddling of names and the missing of finer points – a sign of the Alzheimer’s disease she was diagnosed with not long afterwards. At 59 years old, she suffered an early-onset, aggressive form of this dementia. Soon she could no longer drive at all. She spent most of her days in the sparse rooms of the unit and the grounds of the complex. She died eight years later, which is a typical length of time for this form of dementia.
Sometimes during those eight years, I wondered if she should rather have vanished on those dark roads, and so been spared what came after. There are many things that I wish I had read, known and thought before the forgetting came upon her. These are some of them.
Dave Southwood, from N1
https://davesouthwood.com/nn1
@crockette1
My mother could no longer drive and I was not yet able to. I mean I could drive, but I kept failing the test. For years I took and failed it each time I came home. This meant that my mother and I were stuck in the complex.
The complex was known as a regional eyesore, especially in those days when the gardens were not yet established. It sat on a ridge above town, its boom-gated entrance just off the N2 highway. At the turnoff was a place where men would wait every morning for casual work, hoping to be picked up in a bakkie. The municipality eventually formalised it as a waiting area, paving it and putting in some bus shelter awnings. From there a pedestrian bridge led across the highway to an informal settlement, where a double-storey shack flew Rasta colours. Beyond that was light industria: windscreen repair and calamari wholesalers. The units of the complex all looked the other way, towards the sea, but the coast was distant, kilometres away. As soon as you walked out the gates you were on busy roads, on verges of broken glass and blown-out tyres.
This was a worry since several times my mother had been found wandering along the highway. Once, my father said, she’d been about to climb into a car with some unsavoury types, gangsters really. Another time she had seen a man covered in blood out there. ‘Such a beautiful man,’ she said dreamily. ‘In such a beautiful suit.’ From the patio of the unit she looked across the valley at the highway. She watched the vehicles blinking in the distance and asked what they were.
The complex security, which was mainly to keep people out, also worked to keep my mother in. The lawns, driveways and carports ticking in the sun, the faux-Tuscan blocks of timeshare – all were patrolled on foot. The guards were required to tap a fob at various places, as proof that they were physically doing their rounds. There was a keypad just outside our unit, so several times a day we would hear the bloop as the guard tapped in, and maybe waved at us through the window. Or it was Tyler, a young guy from across the road in his groundsman’s uniform. Sometimes Tyler and I drove around the complex together (he was trying to help me get a licence). We did tortoise-like 20 km/h laps, easing over speed bumps in the complex bakkie. ‘One time!’ he would say when I got a gear change smooth.
What were my mother and I doing? There was not much to do. Maybe we were sitting on the sofa, maybe DStv was playing. A digital satellite TV ‘bouquet’ came as standard in the complex: a selection of sports channels, mostly American sitcoms and movies. This was pretty new to us in the new South Africa; so was the dial-up modem that gurgled as I tried to reach my university friends abroad. Over there I never watched TV, would never think of it. But here it was on all day, my mother waving at the Sky News anchors like they were old friends.
Every half an hour or so, an advert for the bouquet came on – why I could never understand, since you were already watching it. Perhaps it was just to pad things out, fill up dead air. It was like a highlights reel or montage of forthcoming attractions. Explosive blockbusters, Formula One cars spinning off the track, Hollywood catchphrases, canned laughter. A wacky compilation of bits and bobs, telling you how amazing this summer’s viewing was going to be.
The security guards walked their loop, Tyler and I drove our laps, the highlights reel came around again. By the second or third time it was unbearable; beyond that it felt like I had been plunged into a hell designed just for me.
I had the same conversations with my mother, the looping conversations you have with someone who has forgotten what they said two minutes ago. I was unpleasantly surprised at my selfishness, my unreadiness to humour her, my impatience.
Spending time with someone who has dementia dissolves the carer’s own sense of identity. This is well known but I didn’t know it. I only experienced it, and as something horribly corrosive of what a human self, either hers or mine, might be. Why bother pointing something out, why bother telling a story, why bother saying or doing anything at all when it will soon be forgotten? There is no imprint, no recognition, no record of you or what you have done, no emotional return on investment. And why was I thinking like this – in such a hard-hearted, calculating way – about someone who had done so much for me, and given so endlessly of her time?
I strummed the same chords on my guitar. What about a bit of ‘Redemption Song’? said Tyler, showing me how to pick out the opening riff. But I kept playing Ani DiFranco over and over. We were smoking zol behind a boulder, the enormous boulder at the far end of the complex that no bulldozer had been able to shift.
It’s an old, old song, Ani sings, the story of a father and mother, who battle each other, over nothing. Fights around the dinner table, ominous silences, treading on eggshells as you try to figure out what’s what. It’s a story as common as a penny, son (the chorus goes, fading out on a repeat of the last line): It ain’t really worth anything, to anyone.
Today there are some sixty million people living with neurodegenerative disorders that affect the memory, and these are only the registered cases. A whole mid-size nation of amnesiacs, and by 2050 the number will triple. As human populations live longer, dementia has become commonplace. Almost everyone now has the experience of knowing or caring for someone with a condition like Alzheimer’s. A situation like this is now entirely ordinary; but it is also utterly incomprehensible, wrenching, cataclysmic and quite literally beyond words. It was beyond my wildest imaginings, beyond anything that my father or I had been raised, educated or prepared for. As with the Gorgon’s head, I still can’t look at it directly, the sorrow and shame of what happened.
My mother’s mind unravelled just as I was coming into young adulthood. The experiences were so misaligned, the one was such an ill fit with the other, that I simply placed whole tracts of experience under embargo. I was so intent on forgetting my mother’s forgetting that now I worry about losing her altogether.
These are the first two sections of ‘A Line of Light’, collected in Show Me the Place (2024).
In memory of my mother, Carola Margaret Rose Seath (1940-2007).