My stepfather used to call me in the middle of the night, which was more my problem than his. His early-stage Alzheimer's smoothed out many of the details that seemed to make my life, and my relationship with him, far too complicated.
"John, your mother won't go to church," he said to me the moment I grabbed the phone, expecting the worst. "Otto, it's 2 in the morning," I replied, not bothering to hide my frustration. "Yes," he said, the soul of reason. "But she doesn't know that."
Now I can laugh. Then I got angry – if not with him, then with the world, with our collective fate. It's all so senseless, so pointless, so sad – and it's what we're left with after everything else is gone.
The disconnection of Alzheimer's makes most people feel very uncomfortable. Cathie Borrie owns up to the dark side of the disease often enough in The Long Hello, her chatty memoir of her mother's last years, that you know she's intimate with the sadness (as well as being a wily veteran of sanity-challenging phone conversations). But this attentive Vancouver writer with a slightly scattered list of credentials (nurse, lawyer, store owner, ballroom dancer) learned from her own prolonged experience as a caregiver how to look past the pain and find the unexpected poetry of the aging brain – through the strange, mesmerizing bouts of lyricism from a mother who could excite surprise and delight in a daughter expecting to see dementia as a slow death sentence.
The Long Hello details her bracing sense of discovery with a wonderment that's hard to resist, if only because it's so much better than the dour, depressing alternative. The book's highly literary vision of disease is a powerful challenge to more detached clinical observations: Why do we overlook the beguiling language and memorable storytelling right in front of us simply because we're so fixated on ideas of decline and disappearance? By approaching a parent's Alzheimer's in the spirit of hello rather than goodbye, Borrie is predisposed to pay attention – yet even then she's astonished at the words that emerge from her mother's mouth, almost as if aging could unlock the imagination and unleash a verbal force held back by logic and rationality. She spoke to The Globe from Vancouver.
You've written a lyrical memoir of your mother's dementia that's nothing like a straight self-help book – what was missing in the books you consulted?
I found I was missing an honest, personal account – and anything that smacked of optimism, and the aesthetic beauty I found in my mother's voice. I was bothered by the how-to books' focus on negative and despairing stereotypes we associate with the disease, like the "empty shell" and the "long forgetting." My experience with my mother, against the background of a lot of heartache, included a real sensibility of beauty. One learns that the person going through this doesn't become an empty shell, they become whoever they're becoming. The enduring human spirit is there and should be honoured and respected. There is beauty in even the most difficult situations.
How would you describe the beauty you found?
Broadly speaking, when you go through intense struggling of any sort, and you find insight and meaning in the suffering, there's a sort of beauty in understanding what's going on. At a personal level with my mom, once I decided to smarten up and stop contradicting her and rearranging her, and just really be present and listening – and that's hard – then I heard this voice come out. I decided to tape it because I couldn't believe some of the things she was saying. So it was really through her voice and its beautiful poetry and the crazy, interesting things she was saying that I saw my mother emerging in a way I'd never encountered before in my life.
Your story is very personal – do you really think other people in similar situations can access the beauty you've experienced?
Beauty comes from a number of places. One is learning to sit and listen, letting the other person become whoever they're becoming; and not put your ego and stories into the scene as much as we tend to do. The other part of that beauty is what comes out of that voice you begin to hear, and the human relationship it makes possible. You have to be really present in what's going on – it's like a meditative state.
Doesn't that attentiveness create a new level of frustration – they don't know who you are when you're with them, they forget you've been there the moment you're gone?
All of that is you saying what you need, an ego thing. I remember when Mom stopped recognizing me, quite often she thought I was her brother, whom she loved. I knew enough about them, so I could pretend I was her brother and get away with that. It was like acting, and that was kind of neat: She doesn't know who I am any more, so I have a clean slate – with all my flaws, all the history between us, all the ways I wish I was different, and now I can be a whole new person. There's something quite cool about that.
Cool, but maybe a bit disorienting?
My favourite conversation, I said, "How are you, Mom?" and she answered, "Cathie was up here today, and she said, 'Mom, I'm not going to offer them my shadow.'" My God, that was amazing. I asked her, "Where was this?" And she said, "Somewhere on the other side of here." I got this idea that she was somewhere I couldn't be. It didn't have anything to do with logic, it just had to do with the fact that she was somewhere fascinating.
But most of the time you're still trying to have two-sided conversations, with you being you. So how did you approach your side of the dialogue?
I was simply listening and taking it in and not trying to categorize it or figure it out. It's up to each person how they want to react – what a bunch of nonsense or wow, how beautiful!
So much of what your mother comes out with is nonsense in the conventional sense. Are you saying we should give up on logic and not try to set things straight?
Absolutely. This is a huge point in our conversation regarding dementia – you have to give it up. We were driving along a road with a Shoppers Drug Mart, and my mom said, "Look at that lovely new store." This is early on, so I'm thinking I have to reorient her. I said, "Oh no, that's been here for years." Then I look at her face and she's crestfallen. I think to myself, you stupid idiot, what was the point of that?
You start to learn what works and what doesn't work, and what doesn't work is often what doesn't work in any of our conversations: telling people what's right and what's wrong. Much better just to be in the moment: I'm going to follow you, and whatever you say is fine with me. It's very Alice in Wonderland – there's no path, it doesn't matter where you go, just keep going.
This interview has been condensed and edited.