Elizabeth Barrie is a First Link® outreach worker for the Alzheimer Society of Oxford. She shares her personal connection to the disease.
What is your connection to Alzheimer’s disease?
My mom was diagnosed with Alzheimer’s disease when I was parenting three young daughters. I had to juggle the expectations of motherhood with the demands of supporting my parents as they navigated the uncharted waters of dementia.
Never one to complain or dwell on the negative, Mom continued to participate actively in her community, writing for the newspaper, playing the piano at church and helping to lead choirs. Remaining active, socially and physically, was essential to Mom’s health and well-being throughout her journey. In spite of the changes in her brain, Mom did all she could to care for her family – and what she couldn’t do, Dad did for her. Their 15-year journey with Alzheimer’s disease was a labour of love for both of them.
What were the initial warning signs that led you to believe your mother’s health was changing?
She began taking notes when she and I would have conversations over the phone. When I asked her questions she would read from her notebook about the conversations she’d had with other family members rather than respond from memory.
Mom also began repeating stories and had difficulty finding words, which progressed over time.
Soon after her diagnosis, I remember finding Mom trying to open a can of soup using a hammer and nail. She didn’t recognize the manual can-opener in her kitchen drawer. This was a stark reminder that Mom’s changing brain was going to make even smallest tasks harder to complete, especially in the kitchen.
What support, if any, did you access?
I remember the day I drove to the Alzheimer Society office without an appointment and entered feeling completely overwhelmed and scared. A woman on staff made time for me right away, answering my questions, validating my feelings, and sharing my tears.
I had held it together as long as I could, but when I reached my breaking point, I needed somewhere to turn with someone who would understand and could help.
The Alzheimer Society provided all that I needed and more. I was sent home with resources to read and share with my family, tips to engage Mom and above all reassurance that we were not alone.
Follow-up calls and opportunities for myself and all the members of my family to access education and support came as needed. This help proved invaluable over the course of Mom’s journey.
As a family, we learned to live “in the moment” with Mom. We understood the importance of music, family, laughter and conversation, and we engaged Mom in as many ways as we could, for as long as we could.
When we were lacking information, the Alzheimer Society provided it for us. They shared helpful coping strategies and tips, lending a listening ear at the times when we felt depleted of strength. This was a gift.
Read more stories like Elizabeth’s.
First Link® outreach worker
Alzheimer Society of Oxford