By: Michelle Poirier
The Alzheimer Society of York Region has released ‘Hearts Linked by Courage Honouring Loved Ones and Caregivers on the Dementia Journey’, a collection of stories by York Region residents whose families have been impacted by dementia.
“Each story shares the person’s experience with the disease in hopes that people new on the dementia journey will understand they are not alone,” said Loren Freid, CEO of the Alzheimer Society of York Region.
Mr. Freid said this is a book everyone should read, but caregivers especially may find the book helpful. It can help them understand they are not alone and the network around them may be able to offer help. And for those not affected by the disease, it helps them to understand that it is not just the one with dementia that is affected.
Mike Albani, a resident of Keswick, is one of the book’s contributors. In the book he shares the struggles he, their two sons and his wife, Cheryl, who was diagnosed with early-onset Alzheimer’s in November 2019 at 57 years old, face due to this disease.
“Initially, contributing was simply a way to put my feelings out about the way the disease has had such a dramatic impact on our family,” he said.
“However, I realized that by writing it, I not only got rid of what was inside me, but could turn this into a way to show others what they too might feel and experience. Maybe someone else will be helped by it.”
Mr. Albani said The Alzheimer Society has greatly helped his family by offering resources for his wife, but that the biggest help has been the care giving assistance for him.
“Quite frankly, just having someone to talk to about the disease and its impact on us is sometimes the biggest help there is,” he said.
Cynthia Wallbank, a Sutton resident, also contributed to the book. Her mother, Shirley, has mixed dementia and lives in Cedarvale Lodge in Keswick. She said she was unsure if she wanted to join the project at first because her mother was depressed and she was unable to be with her, her mother moved into assisted living eight days before COVID-19 lockdowns went into effect.
“I didn’t feel too inspiring at the time. However, I did put my thoughts to paper and the story kind of wrote itself. It actually made me feel better and be able to focus on the good and sort of put the bad to the back,” she said.
She has been taking advantage of the resources that the Alzheimer’s Society provides for her mother and herself, saying the realization that her siblings and herself are not alone on this journey has been helpful.
“Readers should know that even though the road through this dark forest that is Dementia is long and very bumpy, there are some bright glades within the trees. Those are the places to stop and breathe in the air. Those are the places to hold on to and look for. Those are the places that will fortify them for the darker ones,” she said.
Keswick resident Kathryn Britten also shared her and her husband’s story for the book.
“I decided to write this story because I wanted people to know that it is possible to keep a loved one at home. I was very fortunate that my husband and I had retired early, and when his dementia first set in at 63, I was still young enough to provide the care at 61, I had the freedom of time to do it, and I had the support of my five children,” she said.
She said she would like other care givers to learn from her story so they can relax and not put stress on themselves or their loved one by thinking certain standards need to be met. That it was okay sometimes to let their loved one sleep in their day time clothes or only be able to have a sponge bath instead of a shower.
“He was never unkempt, he was always happy, and taking this approach lowered my anxiety, which lowered his,” she said.
Her husband, Bob, lived with dementia and passed away in July 2019.
The book launch will take place over Zoom on January 20 at 7 p.m. as January is Alzheimer’s Awareness Month. You can find out more about the launch and order the book at https://alzheimer.ca/york/en/action-ASYorkStore.