Carolyn and Claire are two sisters on the Memory Ball team who are caregivers to their mother Jane, who was diagnosed with early-onset Alzheimer’s in 2008. The rough transcript below is of a speech given after the Alzheimer Society of Toronto screened the documentary, the Genius of Marian.
Thank you to the Alzheimer Society of Toronto for having us here tonight. We are honored to be a part of such a fantastic evening, for a cause very dear to our hearts.
Alzheimer’s disease has been in our lives for well over a decade, which considering, Claire is only 20; it’s been quite a while. Our grandfather was diagnosed first, in 2000, and as in many people over 70, it seemed almost normal to us. As a carpenter in his working years, he spent his time measuring and re-measuring door frames and table heights, right up to the end. He passed away 5 years after the diagnosis, and maintained his pleasant and happy demeanor throughout. Although heartbreaking, it felt natural; he had lived a meaningful, honest life.
As with many people, we thought the disease only affected those in the 70s or older, we thought it was just about missing car keys, and forgetting birthday’s, mismatched shoes. However, as you’ve now seen – it’s much uglier than that.
My mum was one of my best friends. Every morning she would walk into my room, wake me up and I would sit on her lap as she brushed my hair. Then at night, she would read me a story or we would chat about our days, and on many occasions she would fall asleep right next to me in my bed. Jane and I shared one of the most precious bonds of my childhood; we were so similar, which is why we got along so well.
Jane was brilliant, a PR and events guru, known Toronto wide. She represented some significant clients worldwide, including, Richard Branson, and Jackson-Triggs. She was in the prime of her career, a perfectionist, who never needed spell check.
When I was in grade nine, we got the life changing news. She was diagnosed with early onset Alzheimer’s. At that time we all knew how this would end, as our grandfather passed away, 2 years prior. We lived in denial for a couple years, hoping it was menopause that was getting the best of her, but she knew deep down that wasn’t it. I spent that entire summer with her up at my cottage, she was extremely depressed, and there was nothing I could do. Looking back I wish I put my selfish adolescence ways behind me and talked to her more during the time that she was still lucid.
Our relationship has changed dramatically over the past six years, there isn’t a day I don’t wish that I still had a mother, someone who could have gone prom dress shopping with me, got me through a break up, or helped me with university decisions. Now the tables have turned, right now she needs me more than I ever needed her. Alongside my sister, we have been put into the position of her mother. We are the ones who now brush her hair, tell her stories, and put her to sleep.
The affect this disease has had on our lives is immeasurable. The affect this disease has on any family, especially those affected by early-on set is life altering. We felt complete isolation in the beginning, not even sure how to reach out for support or where to get it. We’ve taken away a few positives, Claire and I have a great relationship, however I still get mad that she’s wearing my shirt right now. We are blessed to have the support we have from our father, friends, and a phenomenal PSW – I couldn’t imagine facing this alone. One of the key elements in our own healing, has been the ability to give back. Getting involve with the Alzheimer’s community locally, including the lovely Cathy Barrick, has made an immense impact on our lives. Four years ago, while overwhelmed by my own situation, I co-founded, Memory Ball, with 5 amazing women who are here tonight, and we have since raised $120,000 for AST. This introduced me to several other families, who are in the same boat. My isolation began to fade. We love meeting other young families, helping navigate through each stage of this disease with whatever tricks we’ve picked up. We know the power of music, as a calming agent and that you’re favourite song at our age will stay with you whether you like it or not, so consciously try to block out your Justin Bieber phase if you can.
Alzheimer’s disease doesn’t have many champions, people who are willing to stand up to the stigma, and provide hope to others affected. As we’ve heard, it’s a rising tide. We need to put funding towards research, and a cure. People need to believe their diagnosis isn’t the end, this alone will give families a few more positive years, whether or not the cure comes in time. We need to provide more support to families and caregivers. Although Jane is too far into her own disease, we believe strongly that she would want to be the voice of change, she would want to inspire hope.