The Hallucinatory Thoughts of the Dying Mind

It's strange to think we're halfway through the decade. Time, since 2016 and especially since 2020, has felt strangely stretched: the sense that everything has been happening increasingly quickly, while at the same time, anything that happened prior to, you know, is increasingly faint. Like a lot of people, I was fortunate to spend the worst part of the pandemic holed up at home. I'm lucky: I have a partner I love (and who loves me), dogs that need regular exercise outdoors, as well as, at the time, a job that went remote fast, and stayed that way, at least for a few years.

But life doesn't stop because everything else does, and fifteen hundred miles to the west of me, things were getting worse for my grandfather. Suffering from memory loss and cognitive slowness that turned into dementia, things worsened for him, quickly. Ten years before the pandemic, I stopped to visit with my partner while we were on a trip to Vancouver Island. I could tell he was off, and having to think about things, but that was the extent of it. Eight years later we were in Vancouver to see Hozier play at the Orpheum (incidentally, one of the great concerts of my life), and I extended my trip to be able to stop and see my grandparents before taking the ferry to visit the rest of my family. At that point, I knew things were bad: he was driving, but definitely shouldn't have been; he was trapped in loops, asking me when I was going to marry my partner (happily, he never forgot who I was, or her).

The last time I saw him I was waiting at the Horseshoe Bay terminal, watching him drive away, and feeling that profound sense of sadness when someone we love is beginning to leave. I'd take the ferry, spend the entire trip on the upper deck, watching the brilliant blue of the sky and islands pass me by. I'd spend a couple days with my parents before catching a flight back home. A year would pass. The world was introduced to COVID. I never saw my grandfather again.

He was never particularly healthy - for the longest time, it seemed like his diet was picking at crackers, cheese, and deli meat, black coffee (reheated in the microwave as needed), and Matinee cigarettes. He was studious, whip-smart, thin and unathletic: he told me when I was kid not to worry about being picked last for teams at school, because he always was too, and he turned out just fine. But I never saw him exercise, not once in my life. Any of these things individually could be bad enough, but taken together it's hard not to see 2020, his last full year, as anything but an inevitability.

The last few years, in addition to the mental degradation, he was gasping for air. He moved slowly, like a marionette. And in early January of 2021, he was admitted to the hospital, complaining of chest pains.

A heart attack; and after having a stent inserted, things started to get bad quickly. He didn't understand where he was, why he was in pain, who the doctors were; and in his delirium, he needed to be sedated. He'd never leave the hospital. Within a couple of days he caught pneumonia, and passed away almost immediately, his frail body giving way.

I've never in my life been there when a friend or family member died. When I was eleven, my granddad died of lung cancer, my dad travelling overseas to be with him. And after that, there was nothing, until the COVID years, at which point the deaths came heartbreakingly quickly. A childhood friend from the west coast who had a congenital heart condition, and who just never woke up; a friend where I live here tossed from his motorcycle, on a suddenly-muddy highway due to farm vehicles; and another friend from where I grew up, who I played D&D with for years during my painful teenage years, who died suddenly at 39 (reading the bones of the obituary, either an overdose, or suicide, and no way to find out now).

It's in this context that I read "The Hallucinatory Thoughts of the Dying Mind", by Michael Erard in The MIT Reader, a thoughtful piece about the delirium so often encountered before death. In it, Erard describes how the differences between the idea of dying words, and the actual reality, can be profoundly different. In palliative care and hospice, he writes, 55 to 88% of cancer patients are delirious in the last week to hours before their deaths. Erard quotes David Wright, a medical ethnographer, who writes,

I don’t want to call it a nearly universal feature of the end-of-life experience, but as you die, unless you die very suddenly in an instant, your various bodily systems start to work differently until they stop working at all. And that includes the way that you think, and that includes the way that you communicate.

The last time I saw my grandfather (not my granddad, who I last saw when I was a toddler, and who I don't remember, except in photographs) was in 2018. In 2019, his condition deteriorated. His driver's license was (finally, thankfully, mercifully) taken away from him. And he grew increasingly agitated, checking his pockets for his keys, not understanding why the car wasn't in the driveway. Hozier played another Vancouver show in October of 2019, and we went; but I didn't visit my grandparents, at the suggestion of my mother. Things weren't good with him, she told me. "It might be very upsetting."

When he died in January of 2021, I felt like the air had been taken out of me. He hadn't been an ever-present figure of my childhood, like some people's grandparents are. We saw them regularly when we lived in Vancouver, but after we moved away, when I was nine, visits became limited to Christmases: once a year (at best). But I still loved him. He was good to me. I think he saw someone very similar to himself - academically inclined, left-handed, bad at sports, socially awkward - and he was able to capture me on film, too. A gifted photographer, he took a picture of me as a baby I still have, standing in a fuzzy onesie, my head a mass of curls, staring out into the darkness.

What was I looking at? I don't know, and I can't ever. Similarly, the answer to what did he say in those final minutes and hours? I've thought about this a lot. But even if I could know, I'm not sure I could really understand. And, Erard says, that's perfectly okay. If he was delirious, which he very well may have been, that's a normal part of dying, "in the same way that baby babbling is described as a normal feature of language acquisition."

Some medical staff try to normalize the delirium as part of the natural process of dying, and they encourage family members to enter the hallucinatory world — or at least not to fight it. Many hospices recommend the latter as well: "Do not contradict, explain away, belittle or argue about what the person claims to have seen or heard," reads a short text that a hospice provides about the dying process. "Just because you cannot see or hear it does not mean it is not real to your loved one. Affirm his or her experience. They are normal and common."

The process of living has really driven home for me just how much of life is statistics. I've had family die of cancer, of unknown-as-yet causes, develop dementia; I've had friends become doctors and lawyers and another who murdered his father. For me, there's been the slow realization that the world I read about extensively as a kid, first in books, then in anything I could get my hands on online, was going to affect me in its own unique but similar way.

I was lucky. Between the death of my granddad and the death of my cat in the early 90s, I didn't experience death again directly for almost three decades. Then, as I mentioned above, it was almost all at once. When I was younger I very nearly stepped out of this life, and it will never not be strange to me the number of people I've outlived.

I sometimes think about what my last words might be. I hope that I'm lucid, that I'm not in pain, and that I'm surrounded by people I love. But I also know that, statistically, well, who knows. Perhaps as my body's shutting down, I'll no longer seem to make sense. Periodically in my life, I've experienced hypnagogic hallucinations, voices as I turn on the brink of sleep. My brain is something of a non-stop radio, and I can summon any piece of music I know well, play it back in whole or in part, swap instruments, etc - but I've also experienced the eerie sensation of hearing music I know isn't there, writing at this laptop, at this table, a number of years ago, and hearing Holst's "Mars" clearly as if the players were in the room.

The mind is a strange and delicate thing, working in all kinds of beautiful and unfortunate ways. What will I say when I go? I'm not sure. All I hope is that people are there, and understand that even if I don't make sense, we all have to live with our own queer music, now or eventually. I hope they have patience and understand that one day, this experience will be their own, and their last.