Dementia diary: ‘I think I am going mad. I cannot think any thoughts, there is nothing in my head’

My mother’s bedroom slippers are, according to the sale bumpf, “dementia friendly”.

Except they aren’t – they’ve lost their non-slip grip.

“These slippers make my feet go like this,” she says, and – because the language to describe this eludes her now – she shows me, from her seated position, how her soles slide when she tries to stand up.

My mother’s illness often makes me cry. I blink back tears at this childish demonstration of sliding feet. I weep when she has bad days, when her paranoia invents monsters that we must wrangle with. Some days, I cannot keep up with the fabrications her pitted brain conjures to stop up the holes that Alzheimer’s eats into it.

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

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I coax soup into her, made with leeks and parsley for iron, and fortified by the patience I’ll need when I feed it to her.

“I don’t like this.”

“Try it,” I beseech, in tones you’d use with a recalcitrant toddler as you hold a spoon, animated as an aeroplane, in front of pursed lips.

And briefly, a memory, my memory (of course it’s mine): My mother reading Dr Seuss’s Green Eggs and Ham to my fussy younger brother, “You do not like them, so you say! Try them! Try them! And you may.”

[ Using memories to comfort and communicate with family members who have dementia ]

“I am full,” she announces, “I made my own soup earlier. I ate that,” says my mother, who has not cooked in years. Who could not stand in a kitchen to prepare anything, no matter how “dementia friendly” the lighting, the apparatus, the slippers she stood up in.

Haloperidol, an antipsychotic, is the latest to join her prescription. Before that was lorazepam, to tamp down evening anxiety: Who are those people outside, is that the army? Are they rounding up an attack? Will they kill me? Am I safe?

There is nobody there. I draw the curtains to obscure this terrifying invisible vision. I place half a benzo on her tongue. Within 20 minutes, the fear dissipates. The fear, I find, is the worst. The Dementia Friendly Tips to manage it urge distraction: a walk (but my mother cannot walk), a book (but she cannot read herself or follow the story if read to her), the television. But monsters morph from the most unlikely scenes: a benign BBC history documentary has her cowering.

If only you could just end your life yourself, if you had dementia, if, when, you felt your quality of life was gone...

Sometimes – not often – Mum voices recognition that all is not well.

“I think I am going mad.”

“Why, ma?” I ask gently.

“Because I cannot think any thoughts. There is nothing in my head.”

And again, my eyes well.

My husband used to say, “If I ever get to that stage, hit me over the head.”

He meant euthanise him. When life is no longer worth living, help me end it.

Which is crazy. Because I can’t. And couldn’t: It would be unlawful and unthinkable.

His approach is more considered now; the experience of living with somebody who has dementia forces you to rethink opinions long held.

And to think again, with careful deliberation, about future scenarios. Mostly because it drags them into sharper focus.

[ Man with dementia faces learning of leg amputation ‘over and over’, court hears ]

He says, “If only you could just end your life yourself, if you had dementia, if, when, you felt your quality of life was gone...”

“But you can’t,” I remind him, “by the time it’s not worth living, you’ll have lost all agency.”

And I think of Julianne Moore’s confusion in Still Alice when she is unable to follow the instructions for suicide she had left for herself long before early onset Alzheimer’s undid her.

By the time you’ve lost that quality of life – your memories, your balance, the comprehension to follow something on the television, by the time you’re incontinent, cannot feed yourself the food you can no longer taste – you’ll also have lost your powers of reasoning. You will have lost executive function, (what even is executive function? I look it up: Executive function helps us get things done, helps us plan, focus, remember, multiple task). So you’ll certainly have lost the ability to follow anything like Moore’s carefully filed directions.

You’ll probably also have lost the wish to die: I am often startled by my mother’s vice-like grip on life. As if in losing higher cognition, her primal instinct to survive isn’t just all that remains, it has mushroomed, grown urgent in the absence of everything else.

If you cannot execute the necessary to end it yourself, and given that it’s illegal for anybody else to do it for you, what to do?

My husband and I ponder this.

Then I say, “I don’t want you to look after me.”

Make sure I have a prescription that manages my mood. Don’t let me be sad. Don’t let me be scared. If I can’t sleep at night, make sure I can

I mean, I don’t want him to be the one bathing me, feeding me, dressing me, wiping my bottom. I don’t want the man I have lived with, loved for decades, at the raw end of this. I want his memories of us unsullied by a disease that starts with forgetting. Death by a thousand cuts, he calls it.

“In an ideal world” – dementia-speak is pitted with paradox (dementia friendly!): where on earth is dementia’s place in an ideal world – “In an ideal world”, I say again, “A care home or a paid carer, not you.”

[ Half of carers for people with dementia struggling to make ends meet, study finds ]

He agrees. “Me too. Not you.”

I don’t want our children looking after me either, I say.

Me neither, he nods.

“Make sure,” I continue, “I have a cat to sit on my lap, a view, a dog at my feet, a glass of wine or two, and roll me the odd cigarette. Make sure I have a prescription that manages my mood. Don’t let me be sad. Don’t let me be scared. If I can’t sleep at night, make sure I can.”

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“And take me off all my other prescription meds,” my husband adds: “Anything that’s keeping me alive: statins, blood thinners, pills for hypertension.”

Make sure there’s a DNR in place: I don’t want to be brought back if providence steps in to carry me off.

We must tell the children, I say.

“We must,” he agrees and squeezes my hand.

• Anthea wrote this column before her mother died at home, peacefully, on June 30th. Anthea was with her at the end.

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. Alzheimer’s sweeps . . . We are all dust
11. I can’t imagine forgetting my own children
12. Have you got your mum a toy cat yet?
13. ’Carer’ conjures something saintly. Not me

Instagram: @anthea_rowan