Before dementia revealed itself in my mother, peeling her apart so that she is slowly undone, I knew very little about it. And I did not seek to know much: I gave it a wide berth.
A friend’s mum suffered. And, for as long as she was able, she bravely dragged her everywhere, determined to keep her immersed in some extrinsic world. Her mother sat mute, eyes either vacant or wild, mostly alone, mostly avoided.
I gave her a wide berth too.
I don’t have a choice now — now I am forced to face dementia, to eat most of my meals in its company, to try to engage with it every day.
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A lunchtime bowl of soup, which I would race through on my own at my desk, turns into a tortuously slow affair when Mum’s focus is largely on whatever it is we are eating.
“Pumpkin soup,” I say.
“Gosh,” says Mum, “I’ve never had this before. It’s good.”
With the withering of her world so her interest in food — and by extension her appetite — has expanded: what’s on her plate really matters, and it’s beginning to show.
“There is something wrong with my tummy,” she complains, patting her abdomen gently.
What, I ask?
“It is getting very big — my trousers are too tight. I think I might explode.” She is genuinely concerned about her ballooning waistline.
I laugh: “I feed you too well.”
She looks doubtful; don’t ask a dementia sufferer to put two and two together.
Where she once paid small heed to her physiology, that too is a constant focus. She was never self-centred; now she must be. The diminishing of a life. She, after all, as far as she’s concerned, is all she has in hers now.
“What packet does the soup come from?” Mum wants to know.
It’s not from a packet, Mum, it’s home-made. Pumpkin.
Oh.
She isn’t sure what a pumpkin is.
Three minutes later: “What is this we’re eating?”
Pumpkin soup.
It’s very good, she says, appreciatively.
I have to concentrate hard to respond with the same enthusiasm each time, so that I don’t let a tone of irritation taint my response, betray my impatience: “Isn’t it,” I agree, for what feels like the tenth time in as many minutes.
Another person at the table adds interest, a new dynamic, distraction, levity if it happens to be one of my siblings.
My sister is peeling a clementine with consummate care, delicately ridding it of every single strand of pith.
“Isn’t my sister fussy?” I say to Mum.
She is a bit, Mum says, smiling, then asking, as an afterthought, with some scepticism, “Is she your sister?”
She is, I say.
Then, because just as I hijack every opportunity to reinforce my who’s-who to her, so I seize opportunities to describe old memories; they help to inch conversation that is grindingly slow and repetitive along. And they allow me to luxuriate, briefly, in our mutual past — for sometimes I need to remind myself we had one.
“Do you remember how you used to do our clementines for us when we were little?’ I ask, pointlessly. A rhetorical question; a clue to our lifelong connection.
There are many hard things about living with somebody with dementia, many. But I think the one I struggle with most often is the lack of a launch pad for conversation — as Dr David Robinson, consultant geriatrician at St James’s Hospital, says, there is no past and there is no future for dementia sufferers, there is only the here and now.
This soup’s delicious. What is it?
There is no continuum, no hooks to tether my stories to, no ballast to weight them, no anchors to ground them. Most of the time there’s nothing. Where once we could gossip about family members, Mum remembers nobody, all the juicy bits squeezed dry by her Alzheimer’s. Where once we could discuss the news she listened to as she drank morning tea in bed, we can’t any more: she cannot remember at breakfast time which country is at war with which, or what despot is being ever more tyrannical. These things would once have driven lively, well-informed debate. Now we just float about the dining table, drifting from one element of the meal to another.
In the absence of soup that early in the day, it’s the honey that takes centre stage.
“This jam is very good. Did you make it?”
“It’s honey, Mum — and, no, the bees did.”
Bees? She looks askance.
Sometimes, and I am ashamed to admit it, I resort to Wordle on my phone.
“Let’s see if we can get today’s word, Ma.”
She peers at my screen.
On that? And then, “I’ve never played this before.”
I bite my tongue.
And I try — again — to explain the fundamentals of five letters, one word, what the green squares mean, why they’re orange and how many attempts we’re allowed. Mum looks on bewildered.
Mum who once tried to teach me how to do to the cryptic crossword. Then it was my turn to look confused.
I complete the puzzle in the nick of time.
“Phew,” says Wordle.
Look, I say to Mum, “We got it, we just got it.”
Note the We.
I feel less guilty about playing a game on my phone to ease the tedium of lunch if I feign Mum’s inclusion.
It’s why, when something presents that prompts a recollection of my own, I seize it. Then I take my mother by the hand and lead her down memory lane to show her something we once did together.
“When we were small, you used to do this,” and, with Mum watching intently, I pluck a segment of clementine from my sister’s plate. I split it down its seam with a fingernail and butterfly the citrus out so its fleshy, tangerine innards are exposed.
“Oh yes” says Mum, her expression suddenly lit.
And there it is, a momentary flash: something lost retrieved, something bright revealed, just like the inside of the piece of fruit she takes from me.
Keeping Mum: A dementia diary
- ‘I forgot you were my daughter’
- Time for a holiday
- Is depression key?
- ‘Cures’ are too hard to resist
- Mum is aghast when I say we’re her daughters
- Mum remembers nobody
- Mum only has today
- Everything about my mother is shrinking
Instagram: @anthea_rowan