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The Most Important Conversation to Have With a Parent

"I never spoke to her about what-ifs. I wish I had."

Key points

  • It can seem impossible to talk about the care of a person who suffers dementia.
  • Given the number of elders who will succumb to dementia, it is imperative to discuss plans long before.
  • Had my mother known she'd be diminished, what would she have wanted? I don't think it'd be this.

My husband used to say, “If I ever get to that stage, just 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 I couldn’t.

It would be unlawful. And it would be unthinkable.

His approach is more thoughtful 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 possible future scenarios. Mostly because it makes them real, and drags them into sharper focus.

He says, ‘If you could just end your life, if you had dementia, if, when, you felt your quality of life wasn’t worth it…”

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

I think of Julianne Moore’s confusion in the film "Still Alice," when she is unable to follow the suicide instructions she left for herself long before early-onset Alzheimer’s undid her. By the time you’ve lost that quality of life—your memories, stories, balance, your ability to walk, the comprehension to following something on the television, understand a conversation, 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, and you'll certainly have lost the ability to follow anything like Moore’s carefully scribed and 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, and grown urgent in the absence of everything else.

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

My husband and I ponder this quandary for a while. Then I say, "I don’t want you to look after me."

I mean that I don’t want him to be the one bathing me, feeding me, dressing me, wiping me. I don’t want the man I have lived with for decades—my husband, companion, partner, lover, friend—at the raw end of this. I want his memories of us unsullied by a disease that starts with forgetting. My mother's dementia has whittled her away so that there's almost nothing left, and at the same time, it has eroded my memories of her. Death by a thousand cuts, my husband calls it.

"A care home or a paid carer," I say. "Just not you."

He agrees, "Me too," he says, "not you."

I don’t want our children looking after me either, I say. "Me neither," he nods.

I never had this conversation with Mum. It never occurred to me to ask her, "What shall we do with you if you aren’t you, Ma?"

I assumed she expected me to care for her when I heard her say, as we visited an old friend in a nursing home once, "Please God never let me end up this way." I understood she meant, "Never put me in a place like this."

But on reflection, I think it might have been a plea: "Never let me end up like that." As she witnessed residents, prone, mouths open, eyes vacant and staring. Some moaned as she sometimes does now. Small plaintive mewls like animals trapped.

“Make sure," I urge my husband, “I have a cat to sit on my lap, a view to gaze at, a dog at my feet, a glass of wine, or two, in the evening and roll me the odd cigarette." And I can taste the licorice paper we used to roll our tobacco with back then. Back then when we were young and immortal and reckless.

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

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

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

"We must tell the children," I say.

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

I will write it down, I tell him, “I will write it all down and we will sign it. So that they know. So that they know even if we forget. Even if we forget this conversation.”

"Yes," he says, “Do that.”

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