Dementia: A Fate Worse Than Death?

I've heard people say "I'd rather die than have dementia." 

I've also heard people say "I'd rather die than have pineapple on pizza." 

I'd rather die — it's an expression said with varying levels of literalness. As an offhand exaggeration it's unfortunate at best and wildly offensive at worst.

But sometimes it's true. 

Sometimes people really mean it.

Like Robert Munsch, author of beloved children's stories like "Love You Forever." (You know the one – or you'd at least recognize the cover: a boy on the bathroom floor, toilet paper strewn all around him.) 

In a story published in The New York Times Magazine last week, Robert declared his intention to utilize Medical Assistance in Dying (MAiD).

Robert applied for and was approved for MAiD – which is legal in Canada – after being diagnosed with dementia.

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As you might've guessed, I have complicated feelings about this. Spoiler alert: I have a problem with the whole thing. 

But my problem isn't with Robert or his desire to die with assistance. (As a Geriatric Care Manager, I've had more than one client ask me to suffocate them with a pillow. I've never acquiesced, but I've certainly understood.) 

My problem is with the world we live in: one where Robert and others like him are made to feel that being dead is better than being alive with dementia. 

At the risk of sounding dramatic, let me put it this way: Robert will not be killing himself, but dying at the hands of a society that has made those living with dementia wish they weren't living at all. 

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A few specific things in the article stood out to me. Where should I start? 

1. Is imagination really stolen?!

The title “When Dementia Steals the Imagination of a Children’s Book Writer” goes against everything I believe in as a facilitator of creative storytelling for people with dementia. My TimeSlips training – and years of firsthand experience – prove that imagination is the one thing that sticks even when dementia causes so much else to fall away. 

One type of imagination is "stolen", sure – but another type remains, and yet another type emerges brand new. Maybe Robert's imagination doesn't work the way it used to. But that doesn't mean it ceases to exist. 

A friend of mine recently tore his Achilles tendon. He has a boot on his foot and can't move it the way he used to. But he still has a foot. It might look different, but it's there. He can still walk with support. 

It's up to me to see my friend's foot and believe, myself, that it's still capable. If I just assume that – because his Achilles is torn –  there's no use in asking him to do anything, I am missing out on the chance to see his foot work in a new way. 

And it shouldn't be up to my friend with the torn Achilles to figure out how to adapt on his own; I'm the one who should adjust and reframe what I ask of him in the first place. 

Robert may no longer be able to respond to an open-ended imaginative prompt like: "tell me a story." But what if he was asked: "Hey, what do you think that bird is singing about?" It's not that the imagination isn't there. It's that a different key has to be used to unlock it. And that's not on Robert, that's on us. 

2. And who's to say you need imagination to tell a story, anyway?

Are newly imagined stories the only ones worth telling or hearing? The NYT reporter herself gives the example of Robert reciting one of his old books from memory. The reporter says Robert's "sincerity and zanyness" remain and that the recitation is a delightful experience for Robert as the orator and her as the audience. "And suddenly, there he was: Munsch… wholly transformed into the storyteller he always was." 

Telling an old story gave Robert joy. Hearing an old story gave the reporter joy. So why all this emphasis on imagination, anyway!? Do only new stories born from recent/current imaginative states matter? Why does vocalization of new thoughts make life worth living more so than the joy found in a repeated old story? 

One of my clients tells me the same story every Tuesday and Thursday. Twice a week, without fail, I hear the anecdote about her father's first year as a physics professor. And every time, her eyes sparkle when she starts the first sentence. Every time, she laughs uproariously at the punchline. It's not a new story. She didn't just come up with it. But by god is she happy to tell it. 

But, also  — side note here for those still fixated on a desire for newly imagined plots and storylines — maybe those sparks would still fire if the muses that inspired new tales were still around to strike the match. 

Robert says his "ability to come up with new stories seems to have vanished. So, too, has all the time he used to spend with children, who in turn shaped the stories." So maybe it's not that he can't imagine anymore, maybe it's that he's not inspired anymore. The muses are gone and therefore so are the stories. 

3. Back to vocal communication… 

When the reporter asks Robert how he'll know when the time has come to die, he says he will choose to go "when I start having real trouble talking and communicating. Then I’ll know." 

First of all: it's dangerous to lump "talking" and "communicating" – they're not synonymous. 

Also: Robert believes once he can't vocally communicate anymore that he'll wish he were dead. But how can he assume such a thing? Who has told him it's this way? If you perceive those who have dementia as unable to adequately communicate, how have they articulated to you that their reality is worse than death? If you believe they're incapable of telling you that, how did you reach this conclusion? Why do you assume that's how you'll feel? 

It's purely a projection. 

And what does this say to those who don't communicate vocally? That they'd be better off dead? Or we at least wish they were because they have nothing left to contribute in the vocal manner we deem acceptable? 

4. Who's losing who?

Robert says his life is shrinking. 

We are the ones shrinking him, making him as small as possible so we don't have to be made uncomfortable by his changing.

"Munsch is now at that unsettling, if sometimes brief, stage in the neurodegenerative process in which he is symptomatic but still self-aware. This allows him to watch himself lose himself." 

Robert's not just witnessing himself losing himself, he's witnessing us losing him. He's watching the world let go prematurely, loosening our grip on his life so it doesn't weigh us down.

We're anxious for his final page, his "the end". Or at least, that's how we've made him feel. 

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It's not a Robert problem. It's an us problem. We are the ones making Robert wish he was dead. And we'll be the reason when he is.