I Hope You Know You’re Fodder For A Book Someday
This manuscript is posted in its entirety. It’s the story of my husband’s and my 15-yr-journey with Alzheimer’s Disease. Through 14 years we had various supports and did all right. But in year 15, disaster struck. This book focuses heavily on that final year. It isn’t a fun read. That said, it’s a story that is still happening and needs to be told. Sadly, many patients across Canada continue to be treated with the same lack of understanding and compassion that occurred regarding my husband’s care when during the final year of his life he was certified without any consultation between his doctor and me, his primary caregiver. My hope in posting it is to help create positive change in many areas concerned with dementia patients’ and their families’ journeys. Here’s one beta reader’s feedback.
“Well, it’s not easy reading but the writing is so engaging and the pacing is such that I read it compulsively. …What can I say? It’s overwhelming.”
–Caroline Woodward, author Singing Away The Dark
CANADIAN DEMENTIA FORECASTS
Statistics and projections listed here are the most current available. Most of the numbers come from two Alzheimer Society of Canada reports:
Landmark Study Report #1: Navigating the Path Forward for Dementia in Canada (2022)
Landmark Study Report #2: The Many Faces of Dementia in Canada (2024)
- As of January 1, 2024, we estimate than 733,040 people in Canada are living with dementia.
- Every day, more than 350 people in Canada develop dementia. This is more than 15 every hour.
Hours devoted to care
- Care partners of older adults with dementia provide 26 hours of care a week, on average. This compares to 17 hours a week for older adults with other health issues. (Source: Canadian Institute for Health Information)
- Every year, family and friends provide more than 470 million hours of care to people living with dementia. This is equivalent to 235,000 full-time jobs.
- 50% of caregivers for seniors living with dementia show symptoms of distress. The distress rate for caregivers of seniors with other health conditions is almost half that at 26%. (Source: Canadian Institute for Health Information)
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PROLOGUE
September, 2015 My husband needs to pee. For some reason, before he gets up he puts his pillow on the floor. When he returns from the bathroom, he…
4 min read
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TWO
Diagnosis At 9:15 a.m. a psychiatrist comes to meet us in the waiting room we were directed to when we arrived at the University of British Columbia Hospital…
4 min read
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FOUR
Double Trouble In answer to queries I sent to Bill’s relatives for the UBC doctor, I learn various uncles, aunts, or cousins have suffered from depression, bi-polar disease…
4 min read
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SIX
Hawaii “No,” I answer the question I was asked. “He’s only wearing his bathing suit. It’s black. No shirt, no shoes, no hat. He’s barefoot. He’s carrying my…
4 min read
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EIGHT
Confusion We’ve been in Victoria for a couple of days and are going home tonight. Stephanie has returned to work after a year of maternity leave and hasn’t…
4 min read
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TEN
Perceptions It’s getting hard. In the daytime, he’s fine, but recently Bill started doing things like getting up at night and peeing in places other than the bathroom.…
4 min read