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Dementia Diary: ‘Carer’ conjures something saintly. Not me. I’m a fighter

Keeping Mum: There’s no question: I do this out of a sense of duty, one fed by example: my mother looked after hers

Anthea Rowan and her mother before her dementia diagnosis

Anthea Rowan
Wed Jun 21 2023 - 05:31

I take issue with the word “carer”. It doesn’t describe me. It describes some of what I do. That’s all.

“Carer” conjures something saintly. Not me. “You’re quite prickly at times, you know,” a friend says. I bristle.

My siblings and I decided I was the one best placed to care for our mother because I can: I work from home. I don’t know if we were right. We made this decision because mum used to say, on visiting a friend in a nursing home: “Please God don’t let me end up in a place like this”.

I assumed it was the place she resisted. It never occurred to be it might have been the condition. Perhaps she would rather be dead than here, there, anywhere?

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“Carer” suggests I tend only to the physical. But what of the advocacy we must perform?

Illustration: iStock

My mother has a fall. Her arm is hurt. A huge bruise is blooming blackly against pale skin by the time I get her to A&E. I whisper to the attending physician, “she has Alzheimer’s”.

Dementia-speak for: “Direct all questions to me – even the ones about her name and where she lives.”

A team crowds around her.

“So”, they say out loud and over mum’s head: “She has dementia.”

My mother might have lost her memories, but she hasn’t lost the ability to hear, to feel. Her eyes widen in horror.

I feel my hackles rise.

Mercifully, there are no breaks.

“We’d like to admit her,” they say, “put her on a course of antibiotics, in case of pneumonia.”

I have to advocate for her release. Nope, I say, “I’m taking her home.”

How could I not? The fear on her face: these strange people, this strange place, all this talk of dementia. I hear her from down the corridor when I nip to the loo: “Where is MY DAUGHTER. I want to go HOME.”

He is sick of me, my Dr Google research, sick of me thinking I know better. But I do. I care for her after all

My mother who doesn’t know where home is or – often – who her daughter is, knows she doesn’t want to be here.

“Caring” sometimes means doing what’s best. Even if it’s not the best. When my mother won’t eat – which is often – I feed her full fat yoghurt or, on especially resistant days, vanilla ice cream drowned in teeth-achingly sweet chocolate sauce. When she won’t drink, I fill her cup with Coca-Cola.

You are feeding her like a fast fed American, my husband laughs.

“How about home-made soups,” an earnest friend says. How about them indeed. I almost laugh. Do you not think I’ve tried? Sweated over puréed vegetables only to have them declined, with a grimace. Sometimes calories and hydration are all that count, no matter how they come.

And I am learning to nurse. To decipher drug labels, understand contraindications.

Mum’s tummy is sore. Every morning she wails miserably, says she feels sick.

“Perhaps there’s a bacterial infection,” the doctor poses and prescribes another course of antibiotics. They don’t help.

There’s no question: I do this out of a sense of duty, one fed by example: my mother looked after hers

I listen to her belching, notice she sleeps flat on her back.

“Could it be acid reflux? Could we try an antacid,” I ask the doctor.

He is sick of me, my Dr Google research, sick of me thinking I know better. But I do. I care for her after all.

Two days on omeprazole is all it takes.

When I articulate anxiety about my mother’s horrible seizing of evening mood with euphemistically named Sundowning, a distress that borders on psychosis, an acquaintance says, “give her whatever you can, you’re hardly going to damage her brain any more”.

That is for me to decide, not you, I want to spit.

“Look after mum,” my father said. He came to me in a dream not long after he died. My narcissistic, adolescent self convinced me he had singled me out for this important role. My grown-up self understands it was simply my conscience talking. There’s no question: I do this out of a sense of duty, one fed by example: my mother looked after hers.

So, in the role, I’m often on the look out for advice on how to “look after mum”. I scour the internet for experts in dementia and write to them. I shamelessly introduce myself: “I was interested to read your study and would love to speak to you as journalist and my mother’s carer.”

Carer. The lexicon of kindness. They have to respond!

Sometimes, I pretend I have read a thing to get their attention. I find a title on Amazon, a book about caring for a mother with Alzheimer's. It won a slew of awards. I track down the author and send her a flattering email about how wonderful her book is, how I could relate.

I hadn’t read it; I lied. But I had important, impatient questions.

She wrote back. “You ask good questions, and while I could try to share my experience here, answer your questions, I think that they are answered in my book.”

I’m a fighter. A fighter and my mother’s keeper. But mostly I’m just her daughter

She saw straight through me.

She continued: “As I show in the latter half of my book (Jeez – I’ve got to read the whole thing?) “living with a parent with dementia can be full of joy!”

Full of joy?

I didn’t bother to buy the title.

A reader writes to me. She wouldn’t have bothered with the book either. Her mother had dementia too, she wrote, “the nasty bitter kind”. When her mother, ranting and wild, was admitted to hospital, she remembers the nurses asking, “How have you been doing this for so long?”

“I collapsed sobbing”, she said, “at last someone understood.”

Another, in Co Louth, says of her mother’s illness, “It was like a horror movie, she was there, but she wasn’t – this changeling with the potty mouth and the pouty face had taken away my artistic, funny mother.”

These women, their frankness, they make me feel stronger. They’re two among “legions of caregivers”. That’s how we’re described in the press; we’re part of an army.

Because we number so many? Because we’re fighters?

Yes, that’s better: I’m a fighter. A fighter and my mother’s keeper.

But mostly I’m just her daughter.

Keeping Mum: A dementia diary

Instagram: @anthea_rowan

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