Whatcha Gonna Do?
This article first appeared in the Minden Times on August 9, 2023.
Bouncing again off the 7-piece podcast Let’s Not Be Kidding by Gavin Crawford (available on GEM or wherever you get your podcasts, as they say on CBC), and continuing with an inter-generational exploration of living/dying with dementia, I’m going to talk about the guilt of wishing people were dead and grieving incorrectly when they are. And about becoming a twisted human being because you fear that the trait you share with the person to whom you feel closest is the death you hated them to have. And about what you’re going to do about it.
Gavin Crawford, age 50 and a bit, and his colleagues from the performance arts wax shockingly candid and achingly eloquent about the pain of watching a parent undergo the long slow slide into death by dementia. Gavin says ‘You lose things inch by inch. It’s like pulling strands out of a sweater until there is no sweater left.’ They admit to feeling only ‘a little bit bad for feeling a little bit good’ when the disappearing parent definitively departed. They appreciate the certainty of death replacing the agony of ambiguity, the end of searching for the glimmers of who the parent used to be, the confusion when the old self suddenly appears, the fresh injury when it disappears again, the sustained self-doubt about how one should relate to the person who is simultaneously familiar and strange, loved and loathed, here and not here.
But their hard-earned callousness about their loss gives way to confusion about how to grieve that loss. They do not have the privilege of Joan Didion’s pyrotechnical Year of Magical Thinking. (I threw the book across the room more than once when I re-read it as a widow, furious that this was the guide book that came readily to mind when people sought to help.) Where is the guidebook to Gavin’s ‘grief beyond relief’, the puddle of wool where once a sweater had been? Not evident. Scott Thompson (Kids in the Hall), the eldest at mid-sixties, who alone of the gathered spoke of making room in his imagination and heart for the suffering of the caregiving spouse, found his mother after death ‘more alive than she was for the last few years because now I can picture her in all the different times of her life.’ Aurora Brown (Baroness von Sketch Show), the youngest in her early 20s, espouses living in the present, appreciating every day and every important relationship because death could be imminent; you could get hit by a bus or die by Covid. ‘Or’, says Gavin, ‘we could slowly, very, very slowly, [over] the process of a number of years begin to forget everything we’ve ever known.’ They both conclude, quickly and easily, that they’d take the bus.
There is an ironic connection between feeling a close affinity for the dementia-stricken parent and a sense of shared destiny: we’re so alike in life – will we be alike in death? The beautiful sense of connection becomes a harbinger of doom, the worm stirring within the bud. Gavin calls in an expert to peck at the pesky problem of heredity, which everyone he talked to for the podcast worried about. The medical expert, herself at acknowledged risk because both parents and both grandmothers had dementia, reviews the not-very-encouraging medical knowledge about playing the margins, reducing the odds by living the good life. Aurora, in her twenties, thinks they’ll find a cure. Gavin’s partner of thirty years ‘just assumes’ he’ll become a caregiver; you can see him being hypervigilant that every forgotten name or noun may be the knock on the door, the arrival of the unwelcome guest. He gets angry when Gavin jokes about it. Humour is important but at some point this is not a laughing matter.
Because spouses have choices that children don’t have. I know of a childless wife who sold the family assets, took what she needed to seed a new life in Mexico, and consigned the remaining money and the care of her declining husband to a coterie of friends. (We should all have such friends!) Spouses can install their partners in a care home and visit when convenient. Or not at all. It’s hard to be judgemental: an agreement, a vow, has been breached, albeit unintentionally but nevertheless for real, and not initially by the spouse who can walk away.
Spouses can stay or go. They can do their best job or make a slapdash effort. Children can dilute the connection to nothingness or intensify it to capture a relationship before the possibility is gone. None of these decisions is easy. None of them is perfect. All of them are human.
