The 72 percent: Alzheimer Society of Oxford Staff share their personal storiesBoth Elizabeth Barrie (First Link® Outreach Worker) and Beth Haas (Behavioural Support Worker) at the Alzheimer Society of Oxford share their personal connection to Alzheimer’s disease.
Can you share what your personal connection to Alzheimer’s disease has been?
Elizabeth: "My mom was diagnosed with Alzheimer’s disease at a time when I was immersed in parenting three young daughters. I immediately began juggling 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. It was a labor of love for both of them, and a 15 year journey with Alzheimer’s disease."
Beth: "I have a number of connections: My grandmother had Alzheimer’s disease although it was still called senility in the 1970s. What this meant to me as a child was that we had to travel every other weekend to support her as she struggled to remain in the farmhouse where she had spent all of her married life.
Years later my mother began to experience memory loss. I was witness to her frantic efforts at normalcy as she recognized warning signs she had seen in her mother. I was 24 when she was diagnosed with Alzheimer’s disease.
Later in life, my mother-in-law was also diagnosed with Alzheimer’s disease while caring for my father-in-law who had vascular dementia. We juggled living thousands of miles away with long-distance caregiving for a number of years."
Were there initial warning signs that lead you to believe your mother’s health was changing?
Elizabeth: "She began taking notes when she and I would have conversations over the phone. I could tell that when I asked her questions, rather than responding freely, she would read from her notebook to tell me, instead, about the conversations she'd had with other members of the family.
Mom also began repeating stories and had difficulty finding words. This progressed over time.
Early into her diagnosis, I remember finding Mom trying to open a can of soup using a hammer and nail. She didn't seem to recognize the manual hand-held can-opener in her kitchen utensils 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."
Beth: "With my mother, I started noticing signs about a year and a half before she was diagnosed. There were short term memory issues but she also seemed to be more fragile. She became far less sure of herself, handed me her car keys to drive if we went out together, deferred to my father more often and became weepy. Her handwriting was shaky, spidery.
My siblings and I thought she was experiencing depression, specifically empty nest syndrome; she was without children in the home for the first time in almost 40 years. She defined herself as a mother: this was her role in life and she excelled at it. Thus it made sense that she would be depressed.
Years later when I was tidying my parents’ bedroom, I came across a letter that she had written to a talk show host after a televised theme on dementia. In her letter, she described noticing signs of memory loss in herself. What was noteworthy to me was that the letter was dated at least 3 years before any of us recognized changes. This seems to be supported in emerging research today: subjective cognitive impairment not yet detected in with today’s cognitive testing often develops into dementia. What was heartbreaking was how she was so successful in hiding this from us for so long.
There are 10 warning signs of Alzheimer’s disease. People may think these symptoms are a part of normal aging but they aren’t." Learn the signs here.
What support, if any, did you access?
Elizabeth: "I distinctly remember the day I drove my car to the Alzheimer Society office, without an appointment, and walked through the doors feeling completely overwhelmed and scared.
A woman on staff made time for me, immediately, and sat quietly 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...where someone would understand...and where someone could help.
The Alzheimer Society provided all that I needed, and more. I was sent home with resources to read and materials to share with my family, along with tips to engage Mom and reassurances that we were not alone.
There were follow-up calls and opportunities available to myself and all the members of my family, to access education and support, 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."
Beth: "The Alzheimer Society was brand new in the community where I lived. I think I was in one of their first support groups and for me, it was a lifeline. I learned that I was not alone and that what we were experiencing at home was not unusual. Strategies were suggested, contact information for other community resources was shared and an outline of what lay ahead was offered. I inhaled all of this and then took it home to share with my dad and siblings.
Out of this came fuller understanding, more patience and tolerance for Mom and greater support for my dad who was the primary caregiver."
What propelled you to work in this field?
Elizabeth: "Mom, who had been a school teacher, continued to educate our family in profound and meaningful ways, long into her illness. In this way her capacity to teach and love was never diminished. From their Grandma, my daughters and son, who was born after Mom's diagnosis, have learned about resilience, patience, and protecting the dignity of someone you love. Mom's 'grace under pressure" and Dad's commitment to caring for her, will inspire us always.
Having witnessed Mom's potential to live with purpose, in spite of her Alzheimer’s disease, I was drawn to lend my time and energy to working with other families dealing with a similar diagnosis.
In truth, Alzheimer’s disease affects everyone connected to the person with the diagnosis, and families need to know there is somewhere they can turn for education, resources and support.
I feel fortunate to be part of a team (at the Alzheimer Society of Oxford) that aims to provide ongoing support to all who need it, just as my own family did."
Beth: "My original goal in university was to work in gerontology but then life intervened. My husband found employment in Europe where language was originally a hurdle for me. By then, my grief around the loss of my mother was too keen for me to even think of working in this field. Fifteen years after she was gone, and now back in Canada, I was offered a position with the Alzheimer Society of Oxford.
Although I often regret not being able to apply what I now know about dementia to my mother’s life, I can fully understand the myriad of emotions that family members live with. It spurs me on to think that I am contributing even in a small way, giving back to make the life of someone else’s mom a bit better. That may sound like a cliché, but my mother’s life guides me in most of what I do at work."
The Alzheimer Society of Oxford is here to support members of our community in their journey to understand, or manage the impact, of Alzheimer's disease and other dementias on their lives and the lives of those who they care for. Don't hesitate to reach out if you need support or more information. Contact us today.