This holiday, give hope.
Kerri is a caregiver to her mom, Joyce. Kerri's holiday letter recounts her journey as a caregiver to her mom, who lives with dementia and the difference your support makes for local families who turn to to AS York for programs and services.
My mom grew up in Montreal. She had a close-knit group of friends and was ahead of her time, becoming the first female supervisor at Bell Canada in the 50s. As a little girl, I admired my mom; I remember her as a smart, stylish, and generous woman. She loved to shop – for herself and others. She chose to be a stay-at-home mom for a few years, then worked until she retired in her 60's, and then spent more than twenty years volunteering. Doing for others was a fundamental part of who she was.
In her 80s, while very active and otherwise in great health, my mom had a stroke. A CT scan revealed that her brain was full of plaque. It was only a matter of time before symptoms of dementia would appear and I was overwhelmed with fear of what was ahead of me in my role as caregiver. I reached out to AS York to understand the disease, learn how to best help her, and get a sense of what my options were for services.
Over the next couple of years, I kept track of the changes I saw. A few years later, mom had to have emergency surgery which, as is often the case, led to a rapid cognitive decline.
I struggled. I was dragged kicking and screaming into the reality of this disease. It was heartbreaking to see that she was able to do less and less for herself. I watched as her world became smaller and smaller. I wanted to be a great caregiver for my mom, but to do that, I needed help.
Prior to COVID-19, Mom had been attending the AS York D.A.Y. program four days per week. The wonderful, trained staff brought so much joy – Mom was able to dance and laugh, surrounded by others like her. I truly believe the program extended her happiness and had a very positive effect on her. She was busy, staying active and, in doing so, remained vital, engaged, and interested.
When COVID forced the shut-down of the D.A.Y. programs, she began to decline quickly. During the initial lockdown, I visited her at her window every day, while she cried, wanting me to come in. And my son, Jake, stopped by every day on his way to and from school. But, for 18 months, I was ridden with guilt. I watched through that window as the mom I knew disappeared. When programs eventually re-opened, Mom rejoined the Aurora D.A.Y. program and she delighted in activities that gave her another chance to be friendly and social. But I knew she was fading away from me day by day.
I struggled with so many things. I wanted my mom to be the quick wit, independent, determined, and wise guide she had always been. When she got basic things mixed up, I wanted to correct her. It was a losing battle – the more I fought the disease, the more I upset my mom. The CARERS program introduced me to a small group of people who could relate to me and me to them. We supported each other. Learning how to effectively communicate was so vital for me. I felt like I was learning, progressing, and could be a better caregiver for my mom.
And the First Link Education program helped me learn what to expect. The staff taught me how to focus on my mom, not her disease. They equipped me with information that helped me give her the most independence for the longest period possible. Walking beside her, joining her world, not trying to drag her into my reality. Thankfully, we've never had to walk the dementia journey alone; the team at AS York has been by our side every step along the way.
For me, the greatest challenge through many dark days has been acceptance – accepting I can’t make everything better for my mom – accepting I’m not perfect. The wisdom of hindsight has taught me not to be so hard on myself and to allow the grace of those living with the disease to be my guide – to bravely step forward each day with acceptance, not judgement.
Thank you for playing an important part in my life and in the lives of those with Alzheimer’s disease and other dementias. Please consider a gift to the Alzheimer Society of York Region today to help fund vital support. Their programs and services are a lifeline for families impacted by dementia, families like mine.
With my sincere gratitude,
P.S. Thank you for reading my story and thank you for supporting the Alzheimer Society of York Region. Real people like me – touched by dementia – will feel the impact of your generosity.