About two months ago I resolved to write here weekly. I can say only that the end of autumn was busier than expected, and culminated in my father’s move into long-term care one week before Christmas. This sounds sadder than it is. It is the right place for him to be. In some ways, I had been preparing for this eventuality for the last two and a half years, when I first got a call from a concerned person in his community in Manitoba, who told me that something was wrong. She was correct; Dad, born the same year as Robin Williams, shares his diagnosis, dementia with Lewy bodies. Williams’ suicide was tragic, but there is no denying that he evaded a fast-moving, merciless decline—a fate recognized by some to be worse than death. This is not luckiness, but its twisted inversion. Dad painted the picture above just a few years ago: 2013, 2014? I photographed it and printed it on poster paper for his new room as evidence of his old life, proof for his PSWs (that’s “personal support workers,” for those not in the know) that he used to be capable of intentional expression. As he was, he would have chided me for this, complaining that the colours were off, that I didn’t take care with the light. Not now. I apologized to him anyway. He’s still there, or part of him is partly there.
Having been responsible (to varying degrees, and alongside my very capable sister) for both my parents through their decline and terminal illness in my twenties and early thirties, I keep telling people—jokingly; I can’t imagine anyone wanting to read, let alone publish it—that I’m going to write a book called The Millennial Guide to Elder Care. It would be a book of stark facts, interviews with experts, gentle coaching. For example, if you, as an adult with living parents, have only ever been on the receiving end of their help, consider that you are lucky beyond measure. Consider that this might not be the case indefinitely. Consider that one day you might have to dismantle all the systems of your afflicted parent’s life, and that you will require the legal right to do so. Consider that a crisis can move as slowly as a glacier, that it is possible to live in crisis for a very long time, and that this can erode you until you are particulate, moraine. Consider that within the Ontario hospital system, staff have the right to physically restrain your parent in his chair or bed, not in the interest of recuperation, but because dementia makes him walk obsessively and has also stripped away his literacy, so that he can no longer read signs that say, “Do Not Enter,” and this is an inconvenience. (Happily, the use of restraints is illegal in long-term care except to enhance dignity—helping people sit braced upright for meals, for example.) Consider that when you object, you will be told that the only solution is your supervising presence in the hospital room, all day and all night, for as long as is necessary. This happens to caregivers daily. It could happen to you.
In October I read Ann Patchett’s latest novel, The Dutch House. (Spoilers follow.) I like Patchett because her prose is so assured and unflashy as to be hypnotic, and because she takes her time to please. Most of The Dutch House was no exception. It was a delight when the pieces fell into place and Danny made his first real-estate move, recalling the moment when Barbara Bovender tells Marina Singh a story that causes State of Wonder to swerve wildly in another direction. Watching an expert perform her expertise is deeply satisfying.
Then I came to the scene where Danny and Maeve finally re-enter their childhood home and confront Andrea, their wicked stepmother, thief of their birthright, only to discover that she has lost her mind. Stricken with dementia, reduced to childlike behaviours, and cared for by a hired nurse, Andrea weeps and wails and no longer knows her stepchildren. She is both punished and unpunishable. I finished reading about Danny’s celebrity daughter finally opening the doors of the Dutch house to an adoring public and felt mostly nausea. Is this really Patchett’s fault? Writers have used madness to punish villainy for centuries—hello, Shakespeare. In reality, though, dementia is not actually a punishment any more than influenza or psoriasis, or if it is, it’s the gulag, which is to say, justice’s opposite. I’ve read reviews describing The Dutch House as “a fairy tale”; that lament the fact that due to her dementia, Andrea receives an insufficient comeuppance for her tyranny. This, in the same month when my sister and I had to sit before a panel of healthcare professionals, brandishing peer-reviewed studies that prove restraints lead only to falls, fear, and aggression; when I had to listen to a nurse berate “you girls” (I am 35) for not believing “that this is only going to get worse” (I was aware), asking me how I would feel if it were my mother in a hospital bed “and a strange man came in the room.” I took the deepest breath and did not refer her to the clearly unread patient history we had provided, which stated that my mother is dead. Instead, I walked to the quiet suburban street where I had parked my car, got in, and screamed.
On the day we moved my father into long-term care, a nurse took his arm and showed him to his seat in the dining room. “You’re cold,” she said. “Let’s get you a sweater.” She introduced him to a passing PSW, who said, “Oof, he looks rough. Hospital? Don’t worry. We’ll get you all cleaned up.” And they did. They don’t really need his pictures to know that who he was is still partly there. I have needed the last month to adjust to the new routine. The old one has not yet sufficiently receded for me to relax. Things will get worse, but they are so much better.