Dementia Diary: ‘Everything about my mother is shrinking, atrophying, diminishing’

Sometimes, when my children were little, when days went wrong – were filled with frustration, tears, cross words – at the end of those days, as I watched their sleeping faces, small expressions relaxed into angelic repose, guilt gnawed at me: Would today have been easier if I’d been more patient, less irritable? Done things differently?

Would today have been better if I were a better mother?

I do that now: Consider the day retrospectively after I’ve helped mum to bed.

It’s nothing like looking after a child: Children learn, reach, grow. Everything about my mother is shrinking, atrophying, diminishing

People often say, of the fact I care for my mother, “I couldn’t do what you’re doing.” But sometimes there are no choices; this is born of necessity. You would do it, if you had to.

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People often say, “it must be like looking after a child.” I want to scream. It’s nothing like looking after a child: Children learn, reach, grow. Everything about my mother is shrinking, atrophying, diminishing.

Some mornings, mum is up before six and wondering where the rest of the house is.

“I have been up for hours,” she complains when I pop my head around her door. She’s like a child then – the thrust of her jaw, a pout – “All on my own! Where were you?”

“Mum, it’s only 6.10am.”

“It’s not that early,” she snaps.

The watch I recently bought her, with its big, bold digits, is fastened uselessly about her wrist. My purchase a pitiful representation of hope; she can’t tell the time any more.

No kettles

She has drunk three cups of tea from a flask in her room already. No kettles. She boils them dry and trips the lights.

I don’t shake the irritation from my voice fast enough: “Mum! ‘I’ve only just woken up!”

“Don’t be nasty to me,” she whimpers.

I check myself then and coax her out of her nightdress: “Arms up, Ma.” She raises them above her head as my daughters might have done once.

Don’t enable dementia, my subconscious hisses. But I have to get to work and mum needs dressing, teeth-brushing, breakfast. I chivvy whilst trying to pretend I have all the time in the world. It’s like walking into the wind; needing to be somewhere and never getting there. Two steps forward, one back.

I watch mum battling with a button on her blouse. I slow my breathing, count to 10. “Can I help with that?’ I ease feet into shoes. I watch as she struggles with the zip on her fleece, my fingers itch to do it up for her.

This is the pace of days with dementia. Slow hours falter and slide, time is lost between gaps.

‘Mum, I must get on!’

“Oh don’t get cross with me,” she whines.

“I’m not cross with you.”

“You sound cross.”

Bewilderment

Don’t argue with Alzheimer’s, Dr David Robinson, consultant geriatrician at St James’s, told me: There’s no point. I am learning he’s right: arguing fuels the fire, stokes bewilderment. He also told me a person with dementia might not remember your name, who you are, but they will remember how you make them feel. I remind myself of that daily.

After lunch, mum says she would like to go to her room.

I escort her. Her walk a slow shuffle, she barely raises her feet from the floor.

Why does she walk like that, I ask my sister.

My sister does not know, “Perhaps it’s because she’s afraid to lift them in case she falls,” she suggests.

‘Why did you abandon me? You just left me,’ she shouts, her tone bordering on hysterical, ‘with all those people’

I Google, again. My search history is full of “dementia”. And then I understand: it’s because the communication between brain and body is failing. It’s a telltale sign, this foot slide, another of Alzheimer’s trademarks.

Two hours later, two hours when I cram in as much work as I can, I find mum pacing and furious.

“Why did you abandon me? You just left me,” she shouts, her tone bordering on hysterical, “with all those people.”

“All these people?”

“All those people,” and she flaps a hand in exasperation towards something I cannot see, “Waiting for the doctor; you were meant to come and get me, but you didn’t.”

I am frantically playing catchup – waiting for the doctor? – trying to bridge a widening chasm between what’s real, what’s not.

All what people? Where?

And then it dawns on me: Doc Martin. That’s it: I left her watching Doc Martin.

Full of accusations

One day, one particularly bad day, mum’s lost memories so confused her that they left her full of accusations that I was a liar. I was forced to explain then, to use the D word where I’d always avoided it before. “Mum, I promise I’m not lying, I am so sorry you don’t remember; you have dementia.”

She stopped shouting for a moment, her eyes grew round and then: ‘That means I am demented, DEMENTED!’ she cried

I say it very gently, as if in my casual name-drop delivery I might soften the blow. She stopped shouting for a moment, her eyes grew round and then: “That means I am demented, DEMENTED!” she cried.

And for a second I think of tribal communities in Namibia, in south-west Africa, where dementia sufferers are labelled witches: Dementia from the Latin demens, “out of one’s mind”.

No, no, I protest. “Not demented. Just a bit forgetful.”

Just a bit forgetful: A euphemism to blunt the sharp edge of all this.

I have learned: You cannot explain. Often, even reassurance is wasted. Distraction is key.

I have not used the D word since.

“I’m sorry mum, I’m so sorry. Here, let’s have a cup of tea.”

‘What’s your name?’

Later, I help her shower, closing the curtain to preserve a shred of her dignity, to pretend it matters any more. I help her into a fresh nightgown, arms up, I tuck her in as I used to my children: And then, “Good night mum.”

“Goodnight,” she says and, as an afterthought, “What’s your name again?”

“Anthea, it’s Anthea.”

That’s right, says Mum, “Anthea. Thank you, Anthea.”

I close the door and lean against it. Guilt swallows me. Could I have been kinder? More patient? What could I do differently?

Would today have been better if I were a better daughter?

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

Instagram: @anthea_rowan