Canadians share their stories on life with dementia
Three-quarters of a million Canadians have Alzheimer's disease or some other form of dementia. And that number is expected to double in the next fifteen years, putting huge strain on families and the health care system. In May, The Current aired a special called "Diagnosis Dementia."
We talked to people who've been diagnosed, their families and caregivers; we looked into long term care facilities; and the latest developments in dementia-related research. The response was overwhelming - and this week we bring it to you again...
Anna Maria Tremonti spoke with, Barbara Crawford and Roxanne Varey, two women living with a dementia diagnosis.
- Barbara was diagnosed with vascular dementia two years ago and continues to live on her own in Owen Sound, Ontario.
- Roxanne was diagnosed with terminal, early-onset Alzheimer's last November. She continues to work for SaskPower in Regina.
The song called, "One More Memory" is originally sung by Sara Westbrook. It was written by Sara Westbrook, Andrew Ang and Matthew Tishler and inspired by an Ontario woman diagnosed with Alzheimer's Disease.
'A steward to her lost identity.' The beautiful way a woman with dementia keeps her stories alive
"My mother is a very smart and practical woman. Her decline in dementia has been quite slow. She was first diagnosed in about 2003 and after another crisis a year and a half ago she was moved into long-term care. When my siblings and I were packing up her things from the assisted living facility, I was surprised to find that my mother, around the time of her diagnosis, began to write down her most vivid memories of her childhood, as well as her memories of her mother's own tales of her family and glorious summers on the Isle of Cumbrae off the coast of Scotland. Now, when I visit her almost every day at the long-term care facility, I can read those notes back to her. She often gets confused as to whether I am her daughter or her mother, so her sense of self is quite fragile. However, whenever I begin to read these stories back to her, I can feel in her a greater sense of ease, a loosening of the anxiety and a more grounded sense of things. In a way, I feel to some degree that things are coming full circle. She has nourished me and my siblings to help us to become the rather successful family that we are; and I can feel in some small way that I can help restore her back to herself, but in part through her own agency, because these are the notes that she wrote herself. To some degree, and in a funny sort of way, I have become a partial steward to her lost identity, and in the ritual of reading these notes almost every day I am both learning more about my mother and her family, for some of these stories are things she had never told me before, and helping her try to keep in touch with her own history. In terms of advice, then, I would suggest that those listeners who have older parents who have recently received a diagnosis of dementia, have them either recite or write down their life stories and their memories. This will be an important source of comfort in the days ahead."Listen to Rebecca Kingston re-telling stories to her mother:
'My memories are gone, but my love for you lives on.' How singing gave Judy Hutton a voice
That was Judy Hutton, her singing teacher Roxanne Goodman, and her very good friend Delfine Teillet. They were all in Ottawa. The song, One More Memory was originally sung by Sara Westbrook; co-written by Sara Westbrook, Andrew Ang and Matthew Tishler. It was inspired by an Ontario woman diagnosed with Alzheimer's Disease.
'I cry every time I see her.' Coping with the guilt of living away from a parent with dementia
Jolene Halpin lives in Edmonton. Her parents, Bruce and Joan Halpin, live near Saint John. Joan is 79 years old and Bruce is 80 years old. About 10 years ago Joan had a stroke and she now has the beginning stage of dementia. It affects her short term memory. Bruce is waiting on gallbladder surgery and had a quintuple bypass a few years ago.
And even though Jolene's sister Kristen was able to move in with their parents, Jolene told us about the guilt she has from living so far away from her parents as they get older and as her mother needs more support.
"Even three years ago, her mind would wander. But it wanders all the time now. When I talk to her she's in southern Saskatchewan, where she was born, with her parents on a farm. She's sometimes riding a horse, sometimes talking to her parents. And she'll sometimes call me one of her sister's names. And I've noticed that with the grandchildren, she's having a hard time remembering their names and their birth orders, and who they belong to, which is probably one of the hardest things to understand because she lives for kids. She was the grandmother who would take them for the weekend and they would spend the weekend baking, playing cards, building forts... blanket forts in the living room. She did all of those things with them. So the fact that she is getting to the point where she can't remember them all, is just sad to me. I cry every time I see her. I cry every time I talk to her. Because I haven't seen her for 10 months. And every time I see her, I'm weepy and overcome by emotion. I see her and I think she's gone a little further down the ladder. And it's also tears of joy because she's still alive. I always think when I leave, this may be the last time I see her, may be the last time I talk to her, may be the last time I get to hug her... and say thank you. I feel very, very guilty because I'm not there to help them out. That I'm this far away. My dad said Jolene you have to go. He said this is your life. You aren't responsible for us any more. And I feel like we are. I think you should give back what you got. And we had a fantastic life growing up. My parents were there 100 percent all the time."As told to The Current
'Little people living in the backyard.' The day Laurie Forbes discovered her husband's dementia
Greg Forbes from Belle River, Ontario, was diagnosed with dementia in August 2013. His wife Laurie Forbes is now his main caregiver. They also have four children living at home.
Here they are describing how the family discovered Greg was sick.
What's your story of living with dementia?
This segment was produced by The Current's Dawna Dingwall and Elizabeth Hoath.