Finding the Light and Sometimes the Lyricism in Dementia’s Darkness
There’s no light at the end of the tunnel that is Alzheimer’s disease, for the patient or the caregiver. Sadly, as so many boomers have experienced with partners or parents, it’s a slow journey that ends in a dark place.
But Cathie Borrie, in her new book, The Long Hello: Memory, My Mother and Me, manages to bring light, poetry and, improbably, even joy to that journey.
For Borrie, whose mother experienced dementia and died in 2006, the journey was one of discovery.
“I was expecting this endlessly negative stereotype, descending into hell together,” she recalls.
And there is that, acknowledges the 63-year old Vancouver author.
But there is also this:
“We were out for lunch — she was in her wheelchair because she also had Parkinson’s along with the Alzheimer’s. I had just been unceremoniously dumped by some fellow and because I’d always sought my mother’s counsel, I asked her, ‘Mom, what do you do if you love someone and he doesn’t love you?’
“She said, ‘Go find somebody else.’
“‘But what is love?’, I insisted.
“‘It is something sublime between two people in the same working order.’”
It was Borrie’s own journey of self-discovery that allowed her to hear and value the insights and wisdom expressed by her mother in the midst of dementia.
Having trained and practiced clinically as a registered nurse and then as a public health nurse, Borrie studied law and was called to the bar before becoming a writer and performer.
Her motive in recounting her experience with her mother, she says, was not necessarily to help other caregivers.
“I had no other motive than the sheer joy of writing and capturing my mother’s voice,” she explains. “I really love listening to people who are interesting.”
Borrie began taping her conversations with her mother and enrolled in the writer’s program at Simon Fraser University.
She’s been shortlisted three times for the CBC Literary Prizes.
The Long Hello, published this month by Simon & Schuster Canada, is her first book, but she’s been performing dialogues adapted from it as a stage play.
“The feedback is that a lot of people just expect the worst,” she says. “They don’t listen, they don’t sit and wait and listen to someone with dementia. They stop visiting because that person doesn’t know them anymore.”
Borrie recalls a man, who was crying at the back of the room during her presentation, telling her, “I had no idea of what I’ve been doing wrong. I have to go back to the nursing home and be with dad in whatever way he wants to be.”
Adapting to that new person forged by Alzheimer’s brings untold rewards — untold, that is, until Borrie and others began recounting them.
She explains, “Kids before they get to school, say amazing things because their minds are free. And then we get kind of boring as we go through life. But with Alzheimer’s — although there are phases and heartache — people come to different emotional and spiritual levels. Filters dissolve and they feel freer to be and say what they want.”
That’s not to be mistaken with childishness, she cautions. “It’s patronizing to suggest that somebody in their 50s or 90s is childish.”
Borrie was startled to discover that her mother’s conversation in the midst of dementia could be “so poetic in places, so lyrical and beautiful. My mom had not been that person before. I was not expecting that.”
The dialogue between mother and daughter that’s one of Borrie’s favourites begins with her saying, “What’s new, mom?”
Her mother replied, “Well, Cathie was up here today and she said to me, ‘Mom, I’m not going to give them my shadow.’ ”
Borrie asked her mother, “Where was this?”
“On the other side of here,” said her mother.
“Why that’s important to me is the idea of other universes. She was in a different universe that I didn’t have access to but where she was, in her mind, was somewhere beautiful.
“So I learned to let her be there. To be who she was becoming, not who I was losing.”