"Dementia presents with a host of other symptoms nobody told me about," writes Anthea Rowan. Photo / 123RF
The only thing that has been as steep as the gradient of my mother’s decline in the past 12 months has been my learning curve.
People often say, “It’s not your mother, it’s her dementia.” An unhelpful observation.
I know: I know that when my mother is unkind or impossibly difficult it’s because her empathy and characteristic sweetness are being eaten away by Alzheimer’s. Understanding that the fundamental changes in her are because of disease do not make them easier to live with.
Those changes were subtle to start with. So subtle we attributed them to age. When she referred to leaves as “feathers” eight years ago, when she was 75, I giggled. When a friend’s name eluded her, we dismissed it as a “senior moment”. I only registered that her forgetting was pathological when she forgot who I was. It seems incredible now, now I know better, that I was blind to the symptoms for so long.
But if dementia slinks in with stealth, it gathers momentum. I regard a photo of mum taken a year ago, at a restaurant, after a hair appointment. Dementia has stormed our lives since: today I cannot get her out of the house, she barely eats, and I cut her hair myself with a pair of kitchen scissors.
The only thing that has been as steep as the gradient of my mother’s decline in the past 12 months has been my learning curve.
And I have learnt that dementia is not about lapses in recall; dementia is the seismic loss of memory. My mother often cannot remember she was married. Or how her husband – what’s-his-name – died.
“He left me,” she insists, to explain his absence.
“He was killed in a car accident,” I say.
“How would you know?”
“Because he was my dad.”
If my mother does not remember I’m her daughter, how could her husband be my father? Our family ties are as tangled as our timelines.
Those are the sort of holes dementia shears through memory: huge chasms that entire lives drop through. My grown-up children – three of my mother’s eight grandchildren, the focus of her life a decade ago – have vanished from her archives. She regards photographs of them blankly. She look at pictures of herself with my siblings and me when we were little, her brow creased by puzzlement.
“Who’s that?” I ask.
“Me,” she says, confidently.
“And…?”
She shrugs, “My children?”
But that’s not all; dementia presents with a host of other symptoms nobody told me about. If its physical assault eats through the bits of the brain that remember who’s who and what’s what, it soon gnaws its way past a sufferer’s cognition to get down to the meat and bone and muscle of them. My mother’s forgetting is the least painful part of all this now.
She can no longer walk unaided. It began suddenly, a month ago. My sister, visiting from England, and I thought it was the fault of the new “dementia-friendly” slippers my sister had bought. (Dementia-friendly – I don’t know whether to laugh or cry.) But it wasn’t the slippers; it was Mum’s unfriendly dementia messing with her motor skills.
She is doubly incontinent. The bit of her brain that used to tell her when to go is gone. Mercifully, so has her inhibition; she is oblivious to my changing her nappies. Dementia tampers with taste buds – almost all food tastes of “absolutely nothing”, except when it tastes of “sand”. More worrying, though, is that she no longer perceives thirst. I pour a cola into a child’s sippy cup first thing, to hydrate her. A taste for sweetness is our first, and last, its power to motivate consumption profound. It’s why Mum is sustained by ice cream, strawberry yoghurt and yes, cola before breakfast.
And then, like a cruel joke, dementia invents stuff to stop up the gaps where life is leaking out. My mother sees things that are not there. An antipsychotic joins a prescription that includes benzodiazepines and anti-anxiety meds. I must navigate her drugs to manage her hallucinations.
“Who’s that man with those children on the lawn?” she frets (dementia-fabricated fears form a devastating part of most days now).
I gaze across an empty garden, “Their dad,” I say, buying into the fiction to make conversation. “Isn’t he sweet, the way he’s playing with them”.
Mum smiles, angst briefly arrested.
If I didn’t used to think about dementia, now it’s almost all I think about. I regard my mother’s illness with a visceral, fearful respect. It’s a powerful and prolific thing this, this horrible killer disease. In April, the ONS reported that dementia – which includes Alzheimer’s – was the leading cause of death in 2022.
The Lancet Commission tells us there are 12 modifiable risk factors for dementia (things you can do something about to reduce your risk of the disease by nearly half). The obvious ones: watch your weight, don’t smoke, keep an eye on your blood pressure. The message is: look after your heart and you’ll look after your head.
I set up a Google news alert and every morning a ping announces the arrival of some new development (a hopeful new drug for Alzheimer’s) or disappointment (as hope of its efficacy fades). I scour the science. I contact the authors of the studies I read – on the benefits of magnesium or vitamin D or a Mediterranean diet or dark chocolate or the speed at which you ought to walk (fast, at least 100 paces a minute, preferably more briskly than that. I walk at 125; my marathon-running brother, on a hike with me, observes, panting, “Christ, you walk quickly.”)
I introduce myself to the authors of the research as a journalist with an interest in neurodegenerative disease (to lend academic credibility) and “my mother’s carer”. A guilt-tripping tug of heart strings and they can’t say no. They answer my questions, grant me access to the relevant papers and I pore over them, uncomprehending but determined to understand. “Keep doing hard stuff,” one doctor told me, “to build your cognitive reserve”. Reserve. Reservoir. Saving something precious for later. A dam against the emptying drought of dementia.
I am evangelical. A bore. To my husband: “How many steps have you done today? What are you reading? What’s your waist measurement? What are you going to do when you retire – you can’t just stop, your brain will atrophy.”
“Enough,” he says. “Just because your mother has dementia, it doesn’t mean we’re all going to get it.”
“But you don’t know the numbers…”
He holds up his hand, “I do – you’ve told me… somebody in the UK is diagnosed with dementia every three minutes…”
My husband is an optimist (that’s a plus; an optimistic attitude may be prophylactic according to something I read in January).
And there is (perverse) reason to be hopeful. A 2019 survey conducted by Alzheimer’s Disease International found that 62 per cent of medics think dementia is a normal part of ageing, that it’s inevitable. But it’s not. One in four people think there’s nothing you can do to avoid it. But there is: you can walk fast, frequently, further, you can eat better, you can use HRT if you’re a woman, you can get your hearing tested – as I did, to the bafflement of the clinic I attended.
“But are you actually experiencing hearing difficulties?”
“No, I just want to check”.
One doctor told me, “It’s not easy to avoid dementia, there’s still a large element of fate. But you can do a great deal to protect yourself.”
And for me, the 6am walks five days a week, which I hate; the strength building, which I hate even more; the poring over science papers I struggle to understand; the mindful (yes, Mediterranean) diet I observe; the new, no-wine-in-the-week discipline; the monitoring of cholesterol and blood pressure, which I once considered the pedantic habit of hypochondriacs – for me, these things are a tiny price to pay in a bid to save myself from the independence-stealing, isolating imprisonment of dementia.
My mother announces, “I am in jail.”
It is the perfect analogy for this terminal sentence.
Going up the slide is okay, actually. (Sometimes.)