Dementia whispered its way into our world with dropped words (“Listen to the pre-rain noise,” Mum said), urinary incontinence (well, she’d had three children, what did we expect?) and lost geography (“Where’s the bathroom again?”).
It slunk in unseen and once it gained ground, it stood and it roared: “Tell me,” my mother asked one evening out of the blue, “when did we first meet?”
At lunchtime, she knew I was her daughter. By evening, nothing. All the time it took for the soft green shallows of a low tide to be drowned out by the crashing black waves of a high one.
I hear somebody on the radio: “We imagine if we don’t talk about hard stuff, it won’t happen to us.” But it does. And dementia did. Denial is a powerful force: how could my brilliant, erudite mother succumb to such catastrophic cognitive decline? How could she, especially when her parents survived, thrived, intellect intact, into their 80s: isn’t this thing supposed to be genetic? Possibly, yes.
But also, not necessarily, no.
I cared for my mother in the last 18 months of her life, witnessed this horrible illness lick away at her like a river at a sandy bank until she crumbled completely and there was nothing left of her clever conversation and little of her physical self. It whittled her like a stick as it stole her appetite and her mobility. It erased her, it took all her stories and many of mine: if you cannot speak to your mother about your shared history – the people, the places (because she remembers almost nothing and she especially does not remember you), what is there to talk about? What she ate for breakfast? Yes. Until she cannot recall the toast and honey she had. And then can’t taste it anyway. The flowers you pick on a walk together? Sure, until she can no longer walk: “What do I do with my feet?” she puzzled as I tugged at her trouser legs to untangle skinny shins and arrange one foot in front of the other. See what I mean: catastrophic cognitive loss.
How did you stay sane, friends asked of my role as ‘carer’. Did I? Not always. But I was determined to approach my mother’s devastation with something like curiosity. Perhaps that’s what stopped me from going mad: I asked questions.
I need to know the whys and wherefores of dementia prevention; it’s not enough to read that exercise is good for my brain; I have to understand why
Of her: It’s how I learned why she began to refuse to shower: “I can’t work out how to use the taps” and I wondered – and worried – if she’d scalded herself; why she resisted unloading the dishwasher, “In case I get it wrong”, how she felt on bad days, “like I’m in prison”. It’s why I knew she worried more about people thinking she was stupid than not being able to remember.
Of doctors: Why my mum? Depression, they said, years and years of episodes. Or her stroke? Perhaps the loss of reading as a result of that stroke? All of the above?
Or none?
Sometimes dementia is a loaded gun; you’re going to get the single bullet in a chamber anyway, whatever you do: Russian Roulette. Sometimes it isn’t. The only thing that I know for certain now is that it is not inevitable with age.
So many people think it is. A friend says, “My father went senile so I’m bound to.” Such glib complacency, as if he were announcing, ‘My grandfather went bald, so I’m bound to.’ (Also, senile!?): Did he not bear witness to his father’s coming-undone? It is brutal. It is not a soft, sweet fraying. Is he not afraid because of that? Plotting a different route through life to try to sidestep the ghastly disease that claimed his parent? Because that’s what I’m doing.
My youngest daughter worries, “I hope you don’t get what Gran had.”
What Gran had.
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“What do you do, Mum, to make sure you don’t?” she persists.
What do I do?
I notice every article about dementia. They leap from the page like wagging fingers: Keep moving, eat a healthy diet, avoid sugar, get enough sleep, be social.
I, who sit at my desk too long, a mug of sweet tea at my side, to give me a boost after a bad night, to sustain me through an afternoon when I’d like to nap but need to write.
Can I strike these habits out with others? Create a mitigating balance. If I walk enough – five miles a day, fast, so that my heart pounds, will that temper the dangers of a writer’s sedentary life? If I say ‘no thank you’ to a second glass of wine, rarely eat meat, pile my plate high with organic veg, will that make up for sugar in my tea, squares of chocolate? Can I make extenuating trades?
I Zoom (“harass, you mean,” says my daughter) doctors and experts in this thing. They tell me that while my genetic map might predispose me to Alzheimer’s (if my DNA is knotted with an unlucky-for-some pair of APOE4 genes), also it might not. And even if I develop the pathology of the disease, they say, reassuringly, I might not be undone by its symptoms if I can bank a cognitive reserve like layers of fat for lean times later, a dam against the emptying drought of dementia. And how do I do that, I press: ‘Stump yourself’, they urge: ‘Do hard stuff’, they elaborate.
So I challenge myself with my reading, with Wordle, Connections, Spelling Bee, as if in arming myself with every word in the English language I’ll never lose my own. Do novel things, says a Dublin doctor, go to a different restaurant, try something new, find another route home – subtext: help your brain to learn how to navigate its way around the roadblocks cemented by the amyloid plaques of Alzheimer’s.
Dementia’s silent slink-in is especially quiet because it settles into the parts we cannot see, places we do not expect risk to lie in wait
I need to know the whys and wherefores of dementia prevention; it’s not enough to read that exercise is good for my brain; I have to understand why. And when I do, I begin to lift weights in the gym. Use it or lose it the scientists say of both muscle mass and brain cells. I watch my sweating, graceless form in the mirror as I raise 5kg above my head, hating every minute of the hour I spend here three times a week. And I remind myself of the brain-derived neurotrophic factors that exercise prompts – a cerebral neurogenesis even if I still look like the old me.
Dementia’s silent slink-in is especially quiet because it settles into the parts we cannot see, places we do not expect risk to lie in wait. Who’d have thought my mother’s oral health might have impacted her cognitive health? Not brushing your teeth – and when she was sick with depression my mother’s self-care went the way of everything; it just went – and her anti-anxiety meds left her mouth unhealthily arid: “my mouth’s as dry as a bone”, she’d complain. The bacteria that breeds in gums and underneath tongues can fast-track their way to the brain.
If she didn’t have the energy to brush her teeth in depression, in dementia, she often could not remember how. I accompany her to the bathroom to help her clean the few she has left in her mouth. Her false teeth smile brightly from a glass by the sink.
She picks up her toothbrush and considers it, her brow cross-hatched by confusion.
“How do I use this? Which end?”
Gently I take the brush from her and turn it the right way around.
I consider my smile in the mirror later as I wash my own teeth. It’s not straight or very white. But it is strong. My dentist confirms this with an X-ray – there is no bone loss, no gum disease, but, she says, “You’re brushing far too hard.”
And I cannot be sure whether I do this to keep my teeth or keep my memories.
I scour books for answers, look for my story in those of others.
I track down the author of one whose mother had Alzheimer’s too. I send her a flattering email about how wonderful her book is – I hadn’t read it but I had impatient questions.
“All the answers are in my book,” she said. “Remember that living with a parent with dementia at the end of their lives can be full of joy!”
Full of joy?
But retrospectively, if not joy, did I unearth something helpful – even paradoxically hopeful – in those last months with Mum, in asking my questions. Was she, by hideous example, teaching me important lessons?
I barely thought about my brain until my mother’s broke.
Now it’s almost all I think about.
Anthea Rowan’s memoir A Silent Tsunami is published by Bedford Square Publishers
