Rhonda Hoffman remembers some of the early signs that her mother was facing dementia: forgetting things, like a name that would usually come back to her, but didn’t; mixing fact with fiction; confusing things.
But one of the most jarring signs was seeing her mother at the end of a table full of about 20 people at a family dinner: her head down, not really engaged, quiet.
“That one still breaks my heart,” Hoffman said in an interview on CBC Edmonton’s Radio Active on Monday.
“And sometimes you would get frustrated, thinking you know, ‘Come on Mom, play along.'”
According to the Alzheimer Society of Canada, 564,000 Canadians are currently living with dementia. That number is expected to rise to 937,000 in 15 years. Two-thirds of those affected by the neurodegenerative conditions are women.
Like thousands of other Canadians, Hoffman watched dementia slowly take away her mother’s memories.
Eileen Holomis died last year at 93.
After spending years caring for her, Hoffman decided to write a book to help her own daughters, if they end up one day caring for her.
The book is called When I’m Not Me Anymore: A Pre-Dementia Love Letter to My Daughters.
“Just because my mom had dementia doesn’t mean I’m going to, but if I do go down that same road, it would have been so nice to have a heads up on a lot of this,” Hoffman said. “And I think like a lot of people, I didn’t really give it much thought until it became part of my life.”
Released in November, the 64-page book is Hoffman’s way of telling her daughters Rebecca, 31, and Rachel, 29, how she feels while she still has full command of her faculties.
“I cried over every page,” Hoffman said. “But they know that I love them. I think it’s different when you see it in writing. And it was a labour of love and they’ve received it as that.”
‘A road map’
The book is a bit of a road map, Hoffman said, filled with knowledge she gained through her journey with her mother.
“It’s things like, don’t argue with me, agree with me,” Hoffman said, citing a tip she learned from Alzheimer’s expert Jo Huey’s 10 Absolutes of Alzheimer’s Care.
“You’re the one who knows what’s right and wrong. I don’t. So let me have it,” Hoffman said. “If I wish you a Merry Christmas in June well, let’s have eggnog because it doesn’t really matter … it doesn’t help to argue.
“I’m still a real person with real feelings and I respond to respect like anybody else would.”
The book is only Hoffman’s first step with her daughters. Over the next few years, the three of them will get together and record audio and videos of them asking her questions of anything they want to know about their mother.
The exercise is like a reversal of the camcorder tapes Hoffman took of her daughters when they were small, she said.
“When I pull those tapes out now and I can see their little faces and the way they walked and hear their voices … that’s a treasure. You can’t get that back. So to document it now in that way, years down the road they’ll have that same feeling.”