Dementia Diary: ‘It reaches into brains and snatches and grabs, with malice and at random’

Keeping mum: a dementia diary. Keepingmum: dementiadiary

In the year this column ran, I heard from many readers who were where I was, had been where I found myself, or dreaded finding themselves in the same place.

And in the year this column ran, I learned so much.

About courage (mum’s).

About patience (mine).

And, especially, about dementia.

And, finally, I learned about death, a 3am Google search about what to expect, a desperate plea to a palliative care doctor and her kind, swift response, which helped carry me through the hardest final hours.

I had never thought about dementia. Until I had to. As if in educating myself about it, I might be tempting fate, as if in peeling back its skin, I might find it rawly exposed in my own life, sore and stinging.

Silly me. Superstitions don’t bear out. I found it – or it found us – anyway.

I did not know dementia was so prevalent. In 2020, there were more than 55 million people worldwide living with the illness, there are 10 million new cases every year; somebody on the planet is diagnosed every 3.2 seconds. I didn’t know it was feared more than cancer, that the Big C has morphed as the Bigger D. I didn’t know Alzheimer’s begins its insidious crawl through the brain 20 years or more before it shows itself in a single symptom.

Nor did I know it was about anything more than memory loss. Senior Moments.

“God I’m going senile,” a friend used to remark when he mislaid keys or phone. And we laughed.

Laughed!

In an ideal world – there I go again! In what ideal world does a disease as cruel as dementia exist! In an ideal world there’d be no dementia.

But in an ideal world if dementia had to exist, it would exist differently. It would exist so that it presented in neatly measured shapes that manifested at neatly anticipated intervals, with an unchanging and understood trajectory.

Memories would go in some sort of ordered fashion, so you knew what to expect and what to expect next.

But this is not an ideal world and dementia is a wrecking ball that swings indiscriminately.

So I learned that this is what dementia does: it reaches into brains and snatches and grabs, with malice and at random.

The first memory you might lose could be that of your children. The very people who you’d expected to look after you in vulnerable dotage, the very people who’d expected to look after you. Strangers now. What other cruel disease does this? Why don’t the people you knew the least go first? Or even the people you saw longest ago. Not the people you saw last. Not the child you had breakfast with who, by tea time, you must inquire of: “Tell me, when did we first meet?”

And it’s not just the emotional self, the memories, the life and all the familial anchors and landmarks and stories that dementia pulls up and makes off with. Not content with that, it goes rummaging about again and pulls and pulls so that it purloins bladder and bowel control, long before it robs a person of their inhibition, so that they must know of their incontinence and feel shame.

It steals taste long before you die so that you must wither painfully, weeping that things taste of nothing. If you cannot taste, can you feel hunger? When Mum lost the ability to manipulate a spoon, I worried, is this why she won’t eat? She could not tell me. The comprehension had gone. So I pushed food through reluctant lips anyway.

It steals balance while there are still people who would walk with you. It robs you of internal maps so that you are forever lost and always afraid to leave the single room you have acquainted yourself with.

Worst of all, it steals your peace: it unleashes invisible monsters that rampage across the lawn.

“There’ll go soon, Ma, I promise,” as I draw the curtains to block out terrifying hallucinations and yes, the sunshine too.

If you’ve met one person with dementia, you’ve met one person with dementia.

That’s because dementia, the memory thief, that plunderer of whole physical and psychological selves, the villain of the piece, that’s because dementia is whimsical in its cruelty. It ascribes to no rules.

And if you’re optimistic enough to imagine it does, as I once was, you will be tripped up every time a new symptom manifests, suddenly, without warning.

Suddenly, without warning: ”Tell me, when did we first meet?”

Suddenly, without warning: “I can’t seem to walk?”

Suddenly, without warning: “T … t … t … t, oh, I don’t know what I’m trying to say.”

But I also learned that if you ask questions about dementia, if you harass the experts (oh the doctors I nagged!), they will respond.

Which bits of Mum’s brain were being affected when? How? How come she see things I cannot? Why does she think I’m lying?

Her brain, the neuropsychologist I spoke to told me, is scrambling to keep up, to fill in the gaps that are missing; the tiny little shards of rational brain are leaning across widening chasms in an attempt to make sense of her world. She’s trying to join the dots.

But the spaces got too big; we were always falling into them.

I learned my most precious lessons from a Dublin doctor: “A person with dementia may not remember who you are, but they’ll always remember how you make them feel.” I repeated it to myself – a mantra.

I lost count of the times my mother asked me, “Where did you learn to look after people?” as I lowered her to the loo or towelled her after a shower.

From my mum, I’d say, “She looked after my gran.”

“She must have been a very kind woman,” mum observed politely.

She was, I said.

I learned to slow down when I was with her so that she did not feel rushed. I learned never to betray any sign of disgust or distaste no matter the mess we might face. I learned to laugh when I found sausages hidden in pockets or leftover casserole secreted into drawers.

I learned to scream to the skies when it got too much. I learned to rant on long, lonely walks. I learned that doing my best sometimes wasn’t the best. Often wasn’t even good enough.

But mostly, I learned I was not alone. Back to those who had been – were – where I was.

No, I was never alone on this journey of unmoored minds, of forgotten memories, of failing bodies. There was always somebody else who understood. So, I would urge you: talk, talk, ask questions, learn all you can – knowledge dilutes fear, a little. And never judge another’s care journey, you do what’s right for your family. Know that if you’ve met one person with dementia, you really have only met one person with dementia.

And, most of all, remember that while they mightn’t remember you, they’ll always remember how you make them feel.

That, I learned, is the truest thing.

Anthea Rowan wrote the monthly column, Dementia Diary: Keeping Mum, for The Irish Times since July 2022. Her mum died at home, peacefully, on June 30th, 2023. Anthea was with her at the end.

Keeping Mum: A dementia diary

Instagram: @anthea_rowan

Dementia Diary: ‘It reaches into brains and snatches and grabs, with malice and at random’

Keeping Mum: Remember that while they mightn’t remember you, they’ll always remember how you make them feel

Keeping Mum: A dementia diary

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