1.
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.
2.
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.
3.
A beetle with a candle on its back. A candle on the back of a beetle, stuck to its exoskeleton. It is a surreal, properly dreamlike image. Wax drips down onto the hard wing cases, the thorax.
Thorax, exoskeleton: schoolboy words. Our primary school teacher, Mr B, is explaining a memory technique. Ahead of the exams, he is inducting us into the ancient science of how to remember things – mnemonics is the technical word. As in Mnemosyne, Greek goddess of memory, mother of the Muses. The candle beetle is to help us remember that insects have a waxy outer layer. You need to form a memorable image, linking the two ideas. Which seems like a lot of effort for a not-so-important detail; but the other example he gives is better.
For numerals one to ten, you first learn the following rhyme: one: drum, two: shoe, three: tree and so on, all the way to ten: hen. Now say you are going to the shop and need to remember milk, butter, carrots, newspaper. One: a drum full of milk. Two: cover your foot in butter so it can fit in a tight shoe. Three: do carrots grow on trees? You make the links like that, the more outlandish the better. So, two is a good one, the foot covered in butter. Because you can feel that one: the slippery, buttery foot. Butterfingers, buttertoes.
Since Mr B’s memory lesson, hundreds of things – titles, places, people, lyrics, germs of stories – have coupled and uncoupled from the drums and shoes in my brain, the heavens and gates, wine and hens. The technique is especially useful for when you don’t have pen, paper, or phone to hand: all those crutches for memory which (as people have been suspecting ever since Plato’s Phaedrus) are accorded ‘a power the opposite of that which they really possess’. The invention of writing, Socrates warns, ‘will produce forgetfulness in the minds of those who learn to use it, because they will not practice their memory’.
As mnemonics go, the one-drum method is very simple. But perhaps it allows a glimpse of that great mystery, how our minds preserve and salt away the world, the past. Memories work, and work best, in mutually reinforcing clusters. Remembering well is a multidimensional act, moving across different genres and grammars of knowing. Numbers make a sound, then rhyme builds a bridge to story-image. You must keep forgetting to keep remembering (the one-to-ten system must be flushed clean to take on new data). Maybe dreams are full of the odd chimeras, the links left on the cutting floor of memory. Such links are both arbitrary and deeply meaningful. Story is a technique for remembering itself. Nothing stands alone in the mind.
4.
In a piece for The New Yorker titled ‘The Comforting Fictions of Dementia Care’, Larissa MacFarquhar explores memory-care units that seek to create calming but artificial environments for patients with dementia. In the United States, these are often modelled on an idealised town square. Picket fences, facades of clapboard houses and faux storefronts: a kind of nostalgic stage set or simulation of small-town America. Given that people with Alzheimer’s often ask when they are going home, some facilities have fake bus stops. Patients can be taken to wait there (at least until they have forgotten what they are doing) for a bus that never comes.
At the heart of this approach – which goes by various euphemistic names: ‘therapeutic fibbing’, ‘brief reassurances’, ‘stepping into their reality’ – is a belief that it is better to lie to patients (if it will soothe them and allay anxiety) rather than try to ‘correct’ them or set them straight. Though once you have begun to go down this road – colluding in a kind of compassionate deception – where does it end?
Not just with fake bus stops: some facilities even have fake buses with a screen for movement. One home, MacFarquhar reports, has simulated a beach with heat lamps, sand on the floor and the sound of waves. Care homes around the world carry different political histories. Some in the Netherlands have warmer, more humid wings for those who grew up in the Dutch East Indies. Some in what was once East Germany have rooms that evoke Communism under the GDR. Ostalgie, as it is called there: nostalgia for the East, for the bad old days.
Reading this, I wondered what the equivalent would have been for my mother. What kind of Truman Show or Good Bye, Lenin! simulation may have set her more at ease? Surely not a mock-up of the various mining towns where we lived. This would have required serious machinery to mimic the daily tremors of rockfalls and underground blasting. Not to mention a huge supporting cast of mine workers, walking along the hard shoulder in overalls and gumboots, to recreate the rolling mass action of the 1980s. Perhaps even some zebras and ostriches to evoke the lush company golf course on which these animals roamed, its fairways watered with undrinkable effluent from the mine workings. It had a distinctive odour, that water, a smell that rose from the company lawns and parks and gardens. ‘A subterranean pollen-scent of chemicals, as of the minerals flowering underground’ – Nadine Gordimer’s perfect, Proustian description brings back that whole, collapsing world for me. White South Africa was already its own kind of simulation, its own false utopia.
I realise that I know little about what would have constituted a home for my mother. She had grown up in Cape Town as one of six children (three boys, three girls) and would speak about making ‘pine needle houses’ in the forests as a girl. Her mother played Chopin and loved Edith Piaf (her namesake), wearing berets like the French singer. Her father prevented his children from going to the beach before 4 p.m. – he was ahead of his time, my mother said. Always apply sunscreen to the tips of your ears, she told me, a body memory that is triggered whenever I do. Or whenever I am stirring half a teaspoon of sugar into coffee. Try to taste the sweetness without all that sugar, she would say, the natural sweetness in things.
When her parents divorced, three of the children went with Edith up to Johannesburg and three stayed behind in Cape Town. My mother was going to stay with her two beloved sisters Audrey and Sally, but (as she remembered it) a last-minute switch was made in the rail station. Her father took back one of her brothers and she was placed on the train up north. Up to the cold, dry Highveld where her working mother had to send her off to boarding school. It was a moment she came back to again and again in her last years: the fear that she would suddenly – for reasons beyond her understanding or control – be sent away. Dementia disorders mine the fault lines and traumas of a life, the pain and emotions that linger even when the events that caused them may have been forgotten or become garbled. The siblings were not switched at the station, my aunt later told me, but it was true that my mother was later sent north instead of her brother.
She spoke often about happy times ‘temping’ in 1960s London and then Johannesburg, where she eventually became secretary to the chairman in a mining company’s head office – as high as someone like her could go, I imagine. She first met my father because she couldn’t read his handwriting. When she married him, company policy obliged her to leave her job: it did not tolerate wives being employed. I found this out years after she died, and looking back it seems to explain the arguments where she would threaten to go and work as a cashier in the supermarket, as a cleaner, whatever – she needed to get out and do something. She’d travelled the world, getting up to all sorts in Swinging London, lighting one cigarette with the end of the other. Now she was stuck here, feeling useless – something amplified terribly by dementia.
We weren’t a home movies kind of family, but I still find it odd how little record I have of my mother during these years. No video, no audio, even though I was always carrying around a four-track recorder. I find I struggle to remember the sound of her voice.
‘I became, as so many caregivers do, a record keeper of someone else’s obsessions’ – so writes Dasha Kiper in Travellers to Unimaginable Lands, a book about the cognitive challenges, even impossibilities, of relating to someone with memory loss. Memory is so integrated into every aspect of human life, she goes on, ‘from thinking, to communication, to forming and sustaining relationships, to creating continuity, meaning and coherence’, that its disappearance is incomprehensible: ‘We simply have no cognitive framework that allows for its absence in others.’
I wish I had recorded even those, my mother’s obsessions. Looking back on old journals, I barely mention what is happening to her. It did not fit the pattern of an early adulthood conceived of as a grand adventure, of travel and self-becoming. I simply did not have the language for it. For years I barely stopped moving, jolting around the world in buses and trains, writing it all down – but none of that means anything now. I was writing down the wrong things. Now I comb those old notebooks for the rare moments when I have recorded something she said, some direct speech. ‘I just want to go lie and down over there,’ she would say, pointing to the edge of the complex, the drop off where lawns and flower beds gave way to boulders, a firebreak, fynbos. ‘I’ll just lie down in the sun and not be a bother to anyone any more.’
It was a time of airmail rather than email. Sometimes I would cram into dirty UK callboxes (using international phone cards that ticked down so fast), but mainly my parents and I communicated via onion skin letters or aerogrammes. Aerogrammes were single sheets of paper, postage paid, where you were effectively writing on the back of the envelope. The sheet was then folded in three, gummed together and addressed in the allotted box.
My father would always start, then my mother would tack her message at the end, one that became shorter as time went on. ‘Hi there, Hed. I spent today indoors watching TV’, one of the earlier ones begins (she is writing in the wrong part of the aerogramme). Then, in the right place:
I stayed in all day today – its definitely getting cooler, and I expect it must be getting warmer there. Are you still into food?
Dad’s very good at making money – one day he sells lavender, growing outside, then he collects pansy shells, and I noticed he is collecting bottles in the kitchen!
He also collects a certain type of beach shell which he has no trouble selling.
We can now have meals on the property but so far haven’t availed ourselves much.
We are excited you are coming home. I eventually played tennis this week, which I enjoyed. Hope you will take me on.
‘Are you still into food?’ – the only real clue that something is amiss, though the non sequitur makes me smile now. ‘I expect it must be’, ‘availed ourselves’ – fancy phrases that sound like my mother still has all her linguistic wits about her. But in fact they don’t sound like her at all, she didn’t speak or write like that. She was anything but pompous. Maybe she is reaching for something to hide behind, the kind of language that comes preformed, where you don’t have to think too much. Or maybe she is sending it all up – the highfalutin pretensions of letter writing, language and life itself. She always did have a keen sense of the absurd.
My mother loved tennis, and in terms of her physical effects (pompous phrase), her tennis racket is virtually all I have. It is a Prince Pro with a dark frame and a brown grip. Once, in the 1970s perhaps, it was cutting-edge, the era when my mother was wielding it from the baselines of the Rec Club (she was never much of a net player), dispatching her trademark cross-court slices. The grip seems to be the original: brown and worn smooth like old wood by the serves and volleys, the ceaseless changing between forehand and backhand, rough or smooth, p or d. The top of the frame has been scuffed by hard-surface courts, revealing the base material to be aluminium, silver below the dark paintwork in a band from ten to two. But the strings are in good condition, a healthy dental yellow that convinced me to try the racket out a while back.
Which I regret, because holding it up to the light now, I’m reminded that rackets retain small filaments of tennis ball fluff where the strings cross. And if I hadn’t played with it, then those strands caught in the net of gut would unquestionably have been from my mother’s wily cross-court slice – which was something she could do even very late into her condition. The shape and rhythm of that shot must have been laid down deep in the cerebellum, along with other motor skills, just up from the nape of her neck.
Couldn’t we invent something for her to do? I wrote to my father from the airport as I was leaving again (always leaving: no sooner had I arrived at the complex than I was desperate to be gone again). Couldn’t she wash shells or pebbles or something, the ones that were sold in the gallery?
By this stage my father had split into two people for my mother. There was her husband, who took her for walks and set up picnics on the beach for her birthday. And there was ‘him’, the man who worked in town in and left her out of everything, took her money and her car away. ‘He’ was in there, in the bedroom, and she was too nervous to go in – I would find her poised in the doorway in the middle of the night, then try to coax her back to bed.
She never thought she’d have children, my mother often told me. Getting pregnant with me at forty had been a surprise, a nice surprise. And that was how I felt with her: not carrying the burden of a parent’s unlived life, but left to become myself. Though she had, she told me, suffered from post-natal depression, which made her difficult sometimes, moody.
‘I talk to you like an adult,’ she would say. ‘I can’t help it.’
5.
My father was working hard to start his own business, a small art gallery in town, so he was gone most days. Even Christmas Days, when he tried to snare some last-minute custom. I remember buying some pies at the Shell Ultra City – our closest shop. I didn’t really know how the oven in the unit worked, so one Christmas lunch my mother and I sat down to some lightly charred chicken and mushroom pies.
She seemed vaguely relieved by this. ‘It’s too much bother and too expensive to do much cooking now,’ she would say. This was part of a web of stories and sayings that she came back to, as explanation of why she could no longer work, drive, handle money, cook. ‘The problem is that no one told me who everyone is.’ ‘Of course, I’ve always been a bit absent-minded.’ She tried keeping track of it all in little red diary: ‘I’m so organised I’m disorganised.’ She’d always said that, in a light-hearted way. Now she clung to it as a kind of mantra.
Faced with a welter of confusing, unrelated experience, a person with Alzheimer’s doubles down on what they think they know about themselves. The habitual, well-worn neural routes of the brain – its ‘cognitive reserve’ – are so powerful that this self-driving mode can disguise the progress of neurodegeneration, even to loved ones and carers. Or perhaps more accurately, it can blur the line between an existing personality and an increasingly fraught, compensatory simulation of it.
Though words like this – ‘compensatory’, ‘simulation’ – are loveless and sound wrong. So does ‘dementia’ (a heartless etymology: without mind) and ‘neurodegeneration’ (too clinical, too many syllables). Alzheimer’s is like Marxism: it encompasses far too much, such an enormous body of human hope and pain, to be named after a single person. None of the words for it are right. They are too detached from the experience of watching a self facing its own decreation, and trying to reorganise, regroup, strategise, somehow endure. I’m so organised I’m disorganised.
When we did get out of the complex, when my father drove us to do one of the local forest or beach walks, then my mother would be very nervous in the passenger seat. Alzheimer’s, especially in the early stages (which are in many ways the hardest to witness), unleashes all kinds of fear and anxiety. A nameless angst courses through the body like electric current, earthing itself via whatever is to hand. Each oncoming vehicle made my mother flinch, the trucks made her grab my father’s arm. Cars merging, overtaking, people spilling across the road – perhaps they all looked like accidents waiting to happen, reasons to expect the worst.
When I was a small, riding the Highveld in her mustard Escort, I would stick my hands out the window and make shapes with my hand, scooping and flying it through the air.
Aerodynamic!
The steel-framed mirrors were cocked at jaunty angles. The windows had delicate little winders, and were propped up by these small triangular panes: Scalene! There seemed to be more angles and intricacies to things then, more crannies for memory to dwell.
My mother was a word person, a cryptic crossword expert. So what was the word, I asked, for that feeling of – well it was hard to explain. A kind of excitement, but in the body. Like a bubbly, fizzing feeling, that things would just keep getting better, that life was big, the future full. Or maybe just this steady current of well-being, of feeling invincible really, because I was raised by her and had her attention. What was the word for that?
I’m not sure, she said. Could it be: anticipation?
Biodegradable! I shouted, chucking a banana peel out the window.
These fancy new words allowed you to break the rules. Don’t you think, I asked her, don’t you think that from inside the car, it looks like the dashboard and bonnet is so much wider than the road? That was very true, she said, sounding impressed at this observation. It was all about perspective, she said.
Twenty years later, sitting in the passenger seat of an Audi 500, was she seeing a world in which her mind could no longer account for perspective? Such that everything looked out of kilter to her, overlapping or on a collision course with everything else. The car really was overshooting the road, was somehow occupying a space that it couldn’t or shouldn’t, the law of non-contradiction gone by the bye.
My mother had always been a nervous passenger. But then, this was not without reason. My father was overworking himself, trying to make the gallery a success. The stress of those years – losing his job, moving, dealing with my mother, running a business – it left him so tired that he would fall asleep at the wheel. He would begin to nod off as he was driving along the highway. First just little nods towards the steering wheel, little micro-naps that he would pull up and recover from. But then a deeper nod and maybe a little snort, which could send us edging towards a bridge or the Shoprite lorry barrelling towards us along the N2. At this point, I would do a well-timed little cough to get us back on track.
A polite cough, so that all of us could save face. Instead of saying: Dad, for God’s sake pull over! That cough gives an indication of the level of emotional openness in our family, the small family unit on which the wave of dementia was now breaking.
6.
How to drive: an example of non-declarative memory, the kind of memory that (once you are used to driving) does not declare itself, becomes automatic, implicit, habitual. This is part of the brain’s great ambition to relegate as much of human experience as possible to the unconscious – far less costly (in terms of energy) than conscious processing. Contrast the first experience of driving on a highway (and the utter exhaustion that follows) with how easy it becomes in time. Highway amnesia, highway hypnosis: terms for how the ‘automaticity’ of our mental processes takes over, so that you can drive hundreds of kilometres and barely remember a thing.
Then there is declarative memory – explicit or conscious memory –which takes two forms. Semantic memory: facts and propositions about the world in general (what that triangular sign means, with the road disappearing into mist: tar ends ahead). And then episodic memory, the kind of personal, recollective memory that attaches to a particular event or experience (that drive, with its whole cluster of sensory and emotional traces).
Not that memories for facts and those for events can always be easily distinguished. Autobiographical memory is slippery like that, since it straddles this basic divide. You may ‘remember’ something about your childhood because your parents told you about it later (early life memory tends to be collaborative). In which case something you did experience (episodic), or thought you did, might blur into the memory category of something that you did not (semantic). And if the kind of memory that seems so personal and unique may not be, then what does it mean to ‘have’ a memory in the first place?
That drive, from the mine into town when I am four, five, six years old, emerging from childhood amnesia into autobiography, self-mythology. But oh, how we were admired! She and I, me and her, in the orangey-yellow Escort. Didn’t petrol attendants dote on the car? Didn’t they constantly ask if she would sell it to them? Not today I’m afraid, and we were off again, nipping along between the sinkholes and the slimes dams. Somewhere there my father was at work, inspecting the cyanide tanks or the jaw crushers. But we still had hours to go, hours to be ourselves.
We are passing fields of maize and stopping at the Portuguese grocer in his roadside shack. Unforgettable, because he had pinups of topless women behind the scales. My first experience of pornography, furtively glimpsed behind the mealies and onions hanging from the roof.
Not that (remember) memory is a simple act of recollection. Even though I (seem to) remember those breasts very well, they are no doubt borrowing data from the many other furtively glimpsed breasts that followed (in Scope magazine, Pirelli annuals, then Mandela-era Hustler and later the deluge of internet porn that renders these mags positively quaint). In the same way, the Escort is retrospectively tinted by my recent googling of vintage cars. All are part of a story that I have evolved about my mother and me, burning this cluster of images brighter into the synapses, strengthening but also altering it each time, while consigning so much else to oblivion.
7.
Many years too late, I began reading about dementia. The literature of Alzheimer’s and related conditions is vast by now, a spectrum running from prose non-fiction to much more experimental, fragmentary modes.
Most straightforwardly there are there are memoirs by partners and carers, children or family members. Jonathan Franzen writes about the effects of Alzheimer’s on his difficult father, a piece which begins with the author receiving an autopsy report on his father’s brain (which had been donated to science). Reading the clinical language (‘parasagittal atrophy with sulcal widening’) and the weight (‘1 255 gm’), Franzen cannot help but think of ‘the familiar shrink-wrapped equivalents in a supermarket meat case’.
How to move from the brain as meat to our cherished notions of self, consciousness, personhood? And how long can the self (as we know it) be said to endure in the face of neurodegeneration? Almost all writing on dementia turns on such questions, eventually. The writer-carer is forced to wonder: is this self as real, as alive as my own? Or: where can selfhood be found and honoured in the absence of memory?
Some describe the condition as an agonisingly slowed-down form of dying that gradually evacuates being. Others persist in seeing evidence of individual personhood very late into the condition, even if only (in the words of Patricia Lockwood) as ‘a line of light under a locked door’. The wrong metaphor, probably, but somehow it feels right. Responding to someone with Alzheimer’s opens a small, saving gap between what you may know (conceptually) and what you might perceive (instinctually). Even a writer as hard-headed as Franzen is determined to see signs of his father’s selfhood right to the end, asking us to widen our imaginations about where it might reside: ‘Hour after hour, my father lay unmoving and worked his way toward death; but when he yawned, the yawn was his. And his body, wasted though it was, was likewise still radiantly his.’
A time of unexpected intimacy with a once distant parent – this is one of the common tropes of Alzheimer’s literature, and a way of giving it some kind of moral or redemptive shape. As antidote to any such sentimentalism, there is I Remain in Darkness by the French Nobel laureate Annie Ernaux, an unflinching record of her loved and feared mother’s decline. Never missing an opportunity to mention the smell of urine in the care home, her diary of the ordeal can sometimes feel like the flaunting of authority over a once dominant but now helpless figure: ‘She has to watch television right away. She can’t wait until I have cleared the table. She no longer understands anything, except her own longing.’
Why, Ernaux wonders, is she gathering the favourite sayings of a mother who can now barely speak? ‘Literature is so powerless’, she comments. And then: ‘I am terrified to reread what I have written about her.’ She records driving away from the care home after visits, listening to music at full blast on the highway. The need to pursue an affair, to feel sexual again, to put distance between herself and what is happening back there.
Then there are the rarer, first-person accounts written by those suffering from dementia, like Thomas DeBaggio’s Losing My Mind (which I have never found the courage to read). Autobiography becomes autopathography, the self as refracted through the prism of disease; though in the case of dementia this can only reach so far. ‘For how does the I observe the I that is going,’ asks Nicci Gerrard, ‘and how can language capture its own disintegration?’
In What Dementia Teaches Us About Love, she explores the ‘emotional modernism’ of the art that attempts not simply to observe and describe but to inhabit late-stage Alzheimer’s: that ‘desolate place of self loss’ in which ‘there is no central narrator, no coherent story, where things are fractured and the safe ground slides away beneath our feet.’ In the wake of her husband’s dementia, she finds the work of Samuel Beckett charged with a new meaning, as does Dasha Kiper: those ‘nutty, obscure and flamboyant conversations’ in a play like Waiting for Godot, the ‘nonsensical misunderstandings, pointless quibbles, inconsequential mutterings.’ The kind of talking that carries on even in the absence of anything to talk about (‘This is becoming really insignificant,’ says Estragon at one point). That is just to keep some channel open in the face of growing absurdity, sadness, silence.
A kind of broken experimentalism, Gerrard suggests, a jagged non-realism is better able to impart a sense of the condition as it advances. She gives the example of The Father, the recent film with Anthony Hopkins, adapted from Florian Zeller’s play. The language of film – shifting sets, changes of actor, jump cuts – is used to evoke an experience of growing confusion and disorientation. Many found it wrenching, gruelling; but my reaction was envy: this is a best-case scenario. Hopkins has such a nice apartment! His daughter (Olivia Colman) is so devoted, his private nurse looks like a film star. He is obsessed about losing his watch, something worth obsessing about, not the little Taz plastic counters that came out of Simba chip packets and so worried my mother.
If anything, it is Everywhere at the End of Time by sound artist The Caretaker (Leyland Kirby) that I’ve found most equal to the gravity and remorselessness of neurodegeneration – no doubt because it moves beyond words altogether. Across six albums and almost seven hours, Kirby subjects old swing and ballroom records from the 1930s to increasing levels of distortion and sonic degradation. The nostalgic soundtrack (just on the edge of human memory) grows ever fainter, the enveloping noise ever louder. ‘A brutal bliss beyond this empty defeat’, ‘Place in the world fades away’ – these are track names in Stage 6, right at the end. By then there is only a buzzing, crackling drone, a wash of distortion.
Do you try to keep someone aware of the facts of their own life, no matter how bleak, and if so for how long? Or do you surrender to a parallel world of simulation and therapeutic lying? A world in which care homes hire improv comedians to help train their staff, with different parts of the facility referred to as ‘on stage’ or ‘backstage’. One of the most haunting examples is something called simulated presence therapy, where loved ones are asked to compile an ‘asset inventory’ of a patient’s happy memories, anecdotes and special interests. A ‘chatting script’ is then developed, a pre-recorded audiotape that impersonates one side of conversation, with timed pauses to allow for replies. ‘There was a séance-like quality to these sessions,’ MacFarquhar writes: ‘They were designed to simulate the presence of someone who was merely not there, but they could, in principle, continue even after that person was dead.’
She seems unsure of the whole philosophy. What does it do to carers who must maintain these fantasies and falsehoods, who must preserve continuity as strictly as if they were on a film set? And what does it do to the moral standing of a person with Alzheimer’s? Is it something you’d want for yourself, after all – being constantly lied to, having a waking dream elaborated around you – just to keep you calm? And (given that a future self with dementia would be so different to your present one) from what vantage point could such a decision ever be made?
The comforting fiction also opens up its inverse: the discomforting truth. That is, the intense frustration that results from trying to keep a dementia patient aware of reality. From trying in vain to reason with them, from not being able to help yourself, even while knowing that their behaviour is due to the disease.
It was not my mother doing all those bizarre things, I would write to my father, it was the Alzheimer’s. I could never imagine that she was ‘just being herself’ when she made wild accusations or draped sopping clothes over everything, because her self was so fundamentally changed every time I came back home. This seemed so obvious to me then; but in time I have come to think a little differently.
To find oneself unable not to blame an Alzheimer’s sufferer for what they do; to keep feeling (even while ‘knowing’ differently) that they are, in some way, just being themselves – this is also, in a way, to reaffirm their moral and human standing. It comes partly from trying to hold on to them – as an autonomous human being, a fully equipped moral self – for as long as possible.
Perhaps it was not just inflexibility or lack of imagination that made my father seem so ill-equipped to accommodate my mother’s dementia, so unwilling to concede its alternative reality. Perhaps it was also him assuming that what she needed was what he, a fiercely independent, self-made man, would have wanted for himself.
To slide into the comforting fiction, on the other hand, is to tear up the contract of reciprocity, to default on the agreement that someone is just as real as you are. But eventually there is no choice in the matter.
8.
As my mother’s anxiety subsided, as she entered the post-awareness stage, I felt better equipped. Quite well trained, in fact, for the serious business of submitting to a world where everything was (as she seemed to think one day when looking at photos from my travels) an avocado. Trees, sculptures, people in saris: to her, today, these were all avos. And we’re going to go with that – avocado girls in avocado worlds – followed by a slow ‘Hey Jude’ waltz through the unit, Na, na, na – NANANA-NAAAH! – why not? Being serious does not mean being solemn: this was something I had learnt from her. Her utter lack of solemnity, her radiant ordinariness, had taught me a way to be with her now. How to roll with whatever comes your way, how to improvise. How to live (even in the face of all reasons to the contrary) an unembarrassed life.
Say it was some advertising jingle from her childhood that had floated up to the surface of her mind. We’re going to dance through the unit doing ‘the Pepsi jive’? Your arms (she shows me) go left, right, left right left. Sure, let’s jive with that, all the way out the unit and through the gardens. Let’s Pepsi jive all the way to the fuchsia, where Tyler is going to join us in this entry-level dancing, but give it a reggae skank.
Or was it time to belt out Edith Piaf again? Non, rien de rien! we would sing to each other, sashaying through the unit with dishcloths round our faces, really going for it. Noooooooohn, je ne regrette rien! That much I understood, but from there on we were both ‘yoghurting’ out the lyrics – something I learnt from a French friend. Il fait du yaourt was when she and her teenage pals would mime English pop songs without knowing the words. You just go for a mushy, nonsensical approximation of English-ish syllables, all sound and no meaning. C’est payéééé, balayéééééé, oubliééééééé … Je m’en fou de passééééééééé! I don’t care about the past – it’s paid out, swept away, forgotten – although the French is stronger. About the past, frankly I don’t give a shit.
Lalalalalalalalalala …My mother is stuck in these syllables, singing a mantra in the garden of the care home. It is much later in the disease, close to the end.
‘Yes dear,’ one of the other women says. ‘We get the picture.’
‘I think they’re dosing her with too many drugs,’ my father says. One of the women who bathe and change my mother is named Patience. There are other details that I don’t want to record.
My mother lies in a wooden room where I feed her soup and peeled grapes. The care home is under the trees, in earshot of the highway. Cars and trucks driving through the night – but it is comforting somehow, a wash of sound. This is the place where her life, the life left in her body, will end.
9.
I was clearing out a cupboard when a small red book fell out of a box. The cover read ‘Millennium 2000 Edition’ – it was a diary. I opened it and saw my mother’s name in caps. The front pages were covered in bits of her handwriting: phone numbers, addresses, reminders to call her friends – all clustered together in different inks and sizes. Also random names and words that she was (I think) trying to puzzle out the spelling of:
Freddy / Mercury Murcurie
perfectionist
John Gull Guillgood 93 died.
Dr John Grey psy men mars woman venus. Shoe laces stockings New glasses etc Owe N.B. Melody rang a ring next time She rang today. 9 3 TV3. ¼ to 3 collect Hed. 5c x 4 Passport No: Tim has. Medical Aid No: Not on anymore. 54 kg – my weight.
It is not a dear diary kind of diary. It is not confiding or reflective, and there is barely a mention of her condition. It mostly logs daily events, chores, money spent. ‘Bought this book’, the first entry reads on Monday 27 December 1999. 1 January has ‘R50,54 (food bought)’ but no new millennium’s resolutions. If (as many suspect) human memory evolved less to record than to predict, then forgetting is just as corrosive to the future as the past. ‘Walked to Ultra City for bread’ is a typical entry. ‘Walked to town got some sweets washed takies and windows.’ ‘Tried to do washing but useless.’
My mother’s handwriting was rounded, easily legible. In its prime it looked both confident and approachable, smartly adult but without having entirely lost the loops of a more girlish hand. Unpretentious, I would say, which was something I loved about her, love about her, I should say, more so with each passing year. The wisdom of her humility is endless.
The handwriting does begin to change, though. The letters become detached, rather than linked up in cursive. Her v’s and n’s had always been very similar, and now they become almost impossible to tell apart. The earlier entries surely record a ‘lovely drive’, a ‘lovely day’, but then somewhere it shades into ‘lonely day’: ‘Bought tuna mayo lonely day’.
15 February: ‘New Iron!! Hell to use. Windy day I went nowhere Things go from bad to worse.’ 4 March: ‘Tim collected more stones! stones in the head. Would like to see the masterpiece eventually.’ 31 August: ‘Walked to beach & sat there. Bought some cakes & walked home Carol gave me a lift. Kind person.’ There are many names I don’t recognise: a whole roster of people who looked in on her and out for her, a book of random kindness. But she keeps having her shoes and wallet stolen: ‘Real crooks at the Beach Bar.’ I imagine that she had misplaced them, but who can tell.
The entries thin out as the year goes on. The second-last entry (3 September) is: ‘Hed rang – Croatia?’ After this the weeks pass with only the diary’s printed reminders. Armed Forces Day in Mozambique and Malawian Mother’s Day pass in quick succession, so do the Independence Days of Swaziland, Lesotho, Zambia and Angola.
My mother’s last entry (presumably filled in ahead of time) is on 20 November: ‘my b/day’. But other than that, blank.
10.
What would one woman’s death by memory loss weigh in the scale of extraordinary human disaster? What did my mother’s feeling useless count against a world where young men still wait for work at the complex turnoff, and seldom find it? If only such questions didn’t have to be asked. If only we had reached the place where different kinds of sorrow didn’t have to be weighed against each other. One answer would be: very little.
In another sense, given that the world can only be experienced via one mind at a time, I still have reason to think that what happened to my mother was just about the worst thing that ever happened. I have only given glimpses of it here, leaving out the deeper forms of chaos and embarrassment that the condition wreaks in a family, even while feeling compelled to record something of her life and its end. Why transcribe the entries of a diary I can barely read for an audience of readers I barely know? Why write down anything at all, given that Alzheimer’s delivers you, like nothing else, to the limits of human being?
My mother’s dementia coincided with a time in my life that is linked to the so-called reminiscence effect, or reminiscence bump. That is, the period in one’s late teens and early twenties that is most richly impressed in the mind, the life stage that people return to most often, and most vividly, as they get older. My sense was that, while memories of her from that time had been censored or embargoed, they were and are also there, strongly there, waiting to be cued. Writing means pulling on one thing to bring another, as yet unrealised, with it. The beetle of memory pulling the candle on its back; or the candle drawing out the beetle.
Writing is the slow, recursive process in which words are laid down, then reordered and revised, tested and retested against memory in the attempt to produce something halfway dignified, somewhere between a sentimental fiction and a truth that can seem too harsh, or too self-satisfied in its harshness. Sometimes I worry that I have forgotten all about my mother; other times I feel that I carry her within my every sound and gesture, the shape of every sentence.
Every few months there are stories about medicine being on the verge of a breakthrough for Alzheimer’s disease. If it ever comes, the magic pill, and if this epidemic of forgetfulness then becomes historical, then how should it be remembered? How do you build a memorial to forgetting?
‘Things go from bad to worse’ – the relentless nature of the disease will give the lie to any comforting fiction that one may try to braid around it. Don’t pretend that it will be all right, or that there will be a clear moral or a message. Don’t try to make an optimistic plot out of it. I can write about the way my mother came to inhabit the present moment more fully, feeling the sun on her face as if for the first time. But then I must also record how she would, later on, sit out in the complex garden until she was badly sunburned. The staff tried, Tyler tried, my father said, but it wasn’t like he could make her go inside. By the time my mother died, Tyler and I both had our driver’s licences. For the funeral I picked him up in my father’s Opel Corsa Lite (the Audis were long gone) and was touched by how smart he looked in his leather jacket. I realised that I had never seen him in anything but the complex uniform.
Equally, don’t stay mired in sadness for too long. Since there is, finally, no way of knowing what happens in the mind of someone in the late stages of this disease. Also (I would say to my younger self), your anger and impatience is not only selfishness. That thing that feels like a moral tumour in your psyche, it also comes from wanting to hold on to a loved one as a complete person for as long as possible.
A memoir is not simply an account of how things were – that would be naïve. It is more an exercise in how you want the world remembered, a strengthening and laying down of certain neural pathways and now these strings of words, sentence by sentence unfolding on a page, until the end.
In memory of my mother, Carola Margaret Rose Seath (1940-2007).