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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FORTY-NINE
Action News from the ward when I called last night was that Bill was doing well. He was chatting with the nurses all day in actual conversation, laughing…
4 min read
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FIFTY-FIVE
Tuesday, Sept. 19th, 2017 Had a nice lunch with friends, then at 4:00 o’clock this afternoon got a phone call from Meghna, the new Social Worker at the…
4 min read
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SIXTY
De-institutionalizing Bill We all have habits, some good, some not. Me changing any of the habits I have that I want to change seems like an endless task,…
4 min read
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SIXTY-SIX
No Voice I’m coughing but not vomiting anymore, so today I go with Stephanie to the hospital. She didn’t get as sick as Lily and I did and…
4 min read
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Afterword
Where one story ends, another begins. It’s three and a half years since Bill died. In that time I’ve spent hours, days, weeks and months processing our journey…
4 min read