Mother shares heart in dementia guide for daughters ‘while I could still tell them’

Alberta mother creates guide for caring for loved ones with dementia
WATCH: A decade from now, if the estimated number of Canadians with dementia lived in the same city, it would be nearly the size of Edmonton. With so many families touched by the condition, an Alberta mother has created a guide to care for loved ones with dementia. Laurel Gregory has her story.

What is it about her that I don’t even know? Is there anything she would have wanted to say to me?

The questions, once curious, became pressing when Rhonda Hoffman’s quiet, conservative mother fell into the throes of dementia.

“Perhaps there was a secret she once thought she couldn’t tell, but I never found out because her jumbled thoughts were a mixture of facts and fiction by then,” Hoffman writes in her new book, When I’m Not Me Anymore: A Pre-Dementia Love Letter to My Daughters.

Hoffman’s experience losing her mother to the condition inspired her to write a dementia caregiver guide dedicated to her daughters, Rebecca and Rachel.

“I wanted them to know things that I didn’t. To have a guide book. To have some heads up on it for what is in play.”

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Hoffman first started noticing changes with her mom Eileen about 10 years ago.

“She had heart surgery and it was unexpected. And she never really bounced back. She was physically more frail. She was a little more forgetful, a little more confused, a little more withdrawn. And we thought it was just ageing because she was in her 80s, well into her 80s, by then. We didn’t realize that it was the beginning of dementia.”

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In the years that followed, the mother Hoffman knew continued to fade. Eileen’s hearing and eyesight started to decline, she needed help with basic needs and she was withdrawn.

“With dementia, it’s like being in a plastic bubble almost. You see the world going on around you but you’re not really part of it anymore.”

“We would sit at the Christmas table — 20 people at the Christmas table, people laughing and talking — and Mom would just be sitting with her head down,” Hoffman said. “Sometimes I would get frustrated because I would be like, ‘Come on, Ma, engage! You’ve got all this family.’ But what I didn’t realize is that she couldn’t. She didn’t understand the humour anymore… and she doesn’t understand what we are saying.”

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After her mother died in August 2018, Hoffman channelled her grief in her writing. When I’m Not Me Anymore is written as if Hoffman has dementia.

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“I will become a familiar stranger who looks like your mom but behaves and speaks like someone else,” she writes. “Even if I’m not me anymore, the part that sometimes remembers will feel your love and laughter and warmth and kindness still. Few people have known love the way you have loved me, and I will carry that with me always.”

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Imagining their mom that way was difficult for Hoffman’s daughters.

“I was heartbroken. It was a hard read,” Rachel said.

“And just from the perspective that it’s written in,” Rebecca added.

“She’s speaking as though she’s there already so that’s different and kind of hard to process.”

Hoffman sees the book as a way to inspire her daughters to make the most of the time they have now (like planning an “ask me anything” session with their mom) and give practical advice to care for her if she develops dementia.

“The odds are good that we are going to deal with it in some form.

“At least with this I wanted to pass along some insights that I had gained. I wanted them to know my heart while I could still tell them and they could know it’s really true.”

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