Dementia Diary: ‘I can’t imagine forgetting my own children, but mum doesn’t seem, well, bothered’

My children are the centre of my world, an integral element of my every day, even when we’re apart. As a friend once said of her own children, “They’re in my head, from the moment I wake to the moment I go to sleep.” I knew what she meant.

Mum would have agreed. Once. Once, we were the fulcrum of her world.

And that makes me puzzle all the more now: It’s not just that mum cannot remember who we all are and who we are to her, it’s that she doesn’t seem to care. I imagined, because of the person – the parent – she was, because of the powerful nature of motherhood itself, that the connection would be impossible to sever, a sort of resistant, invisible, umbilical cord.

I can’t imagine forgetting my own children. They, witness to this, can’t bear the thought I might. But even when the fact of children arises, mum doesn’t seem – well … she doesn’t seem bothered?

We now know which hospitals are overspending and which are delivering. Let’s fund them accordingly

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The demon dementia has made me uncertain about the net benefit of being around my mother

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Brain benefits: How exercise improves your mood and protects against neurodegenerative diseases

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Would you want to know if you had dementia many years before you developed symptoms?

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Do you have children, she asks – in the tone you might adopt with a new acquaintance, politely, distantly inquiring.

I do, I say. “Three.”

And how old are they?

I tell her.

“About the same age as mine, I suppose.”

Mum lost sight of the maths of any of this long ago. Nothing adds up any more. Her age, mine, my children’s.

“How many do you have,” I ask, tentatively.

Three or four, she says.

“One died, when she was very little,” then, matter of factly, without a trace of emotion: “No idea why: she seemed perfectly healthy.”

Sometimes, I broach the fecklessness of these apparently unavailable children: ‘Shouldn’t they be looking after you?’ I ask

Nobody died. Not then. Dad died later. But he doesn’t feature in her stories at all.

Where are your children, I sometimes ask?

She shrugs, “Oh, I don’t know – somewhere in Ireland I suppose?”

Somewhere in Ireland. Somewhere in Africa. Somewhere, somewhere. Who knows?

We could be anywhere for all she cares.

Sometimes, I broach the fecklessness of these apparently unavailable children: “Shouldn’t they be looking after you?” I ask.

“I expect they’re too busy,” she says, unfazed, as she excuses the absence of this trio of errant progeny.

So we don’t talk about her children much. But we talk about her parents often. If mum tells a story, it will be about her parents’ death.

The Long Goodbye: Caring for a loved one with Alzheimer’s/Dementia

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Have I ever told you about when my parents died?

No, I say, and arrange my expression as one of serious engagement.

I’ve heard the story on countless occasions, but the narrative changes every time. Sometimes, they died after a trip, after a cruise on a boat, following a hike into the mountains, after going camping (Did they ever go camping?) Sometimes they died within a couple of days of each other, sometimes my grandmother a week after my grandfather. Sometimes they died last year. Whenever it was, her father always died first and the telling always renders her grief as raw.

Sometimes, Mum lays the responsibility for her father’s death at her mother’s feet: “If only mummy hadn’t made him go.”

I don’t ask, “Go where”?

In reality, my grandfather died in hospital following a stroke, not the exotic tropical disease of mum’s fiction. And Gran, 14 months later and, as far as mum’s concerned, always of the same thing: a broken heart. She says, “She couldn’t bear to live without him, you see,” a final line which she delivers with a tragicomic flourish.

I’m so sorry, I say.

“Yes” Mum sighs, staring into her Weetabix, “It’s very sad: both my parents are dead.”

I suppress a smile; she’s almost 82 after all. They’d be breaking records in longevity if they were still around.

Then, and only because her default is one of graciousness and not because she’s interested: “Are either of your parents alive?”

I tell her my father died in a car accident. There is not the faintest flicker of recognition. She is utterly unmoved.

Okay. But I do wish somebody had told me before: that he was my son, that he was looking after my money. (We have)

“But my mum’s still alive.”

Oh, she says. She doesn’t ask how – or where – this mother of mine is.

Aside from her parents’ passing, a lesser preoccupation is money. “Where’s my money?”

In the bank, I tell her.

Well, I need some, I have to pay for things. (What things? Meds, apparently. “What do I owe you for these?” she asked one evening as I counted tablets into her open palm).

I’ll pay, Mum. (You’d think the “Mum” would be a clue?)

No, no, she wants to pay her own debts, “Thank you very much”.

You have none, Rob settles them from your account.

“Rob? Who’s Rob?”

“Your son, my brother.” (More clues).

“Okay. But I do wish somebody had told me before: that he was my son, that he was looking after my money.” (We have. About 589 times).

“I’m sorry Mum – I thought I had.”

A few days ago, I left her “tidying” stuff up in her room. She does this: moves a diminishing collection of possessions from one drawer to another, from table-top to bed and back, and then forgets what she’s doing and wanders off.

When I return I find her sitting in a chair, pale and teary.

Are you okay, Ma?

“No, no, I have just discovered the most terrible thing. The most terrible thing,” she wails.

In her hand, she is clutching my father’s old passport, unearthed whilst “tidying”. The word CANCELLED is stamped across every page. She thinks the holder is dead.

He is.

She believes the holder is Rob. Perhaps my father’s face jogs some memory loose so that it clatters to the forefront of her mind and cracks, and in her still young – too young to die – husband’s black and white photo, she sees her son.

“My son! My son is dead!”

“No Mum, no,” I gather her up as I explain: “No, he’s not: That’s dad’s old passport, he’s dead. Not Rob.”

And somewhere, in some part of me, I rejoice: she is safe from distress at the news my long-dead, long-forgotten father has gone.

And that primal instinct of motherhood has briefly, boldly reasserted itself.

Keeping Mum: A dementia diary

1. ‘I forgot you were my daughter’
2. Time for a holiday
3. Is depression key?
4. ‘Cures’ are too hard to resist
5. Mum is aghast when I say we’re her daughters
6. Mum remembers nobody
7. Mum only has today
8. Everything about my mother is shrinking
9. The word dementia is not enough
10. An eraser across the blackboard
11. Mum doesn’t seem, well, bothered

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