‘Being a caregiver doesn't define me’

By Rina Clark

Rina Clark

I was always a people person before becoming a caregiver for my husband David, who has Alzheimer's disease. Twelve years later, I’m still very social, with a close group of friends who have stood by me and propped me up.

The fact that I’m still the same person I was before David's diagnosis may seem self-evident, but it's a message society often forgets. Caring for someone with dementia can be all-consuming, but it isn't all-defining.

That's not to say that Alzheimer’s disease hasn't taught me important and often difficult lessons. For the first six months after David's diagnosis, I couldn't even say the word “Alzheimer's.”

David was a high school physics, chemistry and calculus teacher. He was my walking encyclopaedia. I used to joke that I married him for his brains.

Watching his facility with numbers and words deteriorate was especially hard. So I decided that I would "build memories" for him. We travelled to Egypt to see the pyramids, to China to see the Great Wall, and went on a safari in east Africa.

In between, I learned everything that I could about drug trials and enrolled David in some of the more promising ones. I sought out the best Alzheimer's doctors and got him on their patient lists, even though it meant regular trips from our home in Sault Ste. Marie to Toronto.

I was always trying to control it, but I couldn't do it. I learned that life with Alzheimer’s disease is a series of adjustments.

Instead of trying to control things, I now let my friends help me and David. One friend takes David out every Wednesday, and another stops by after her yoga class to feed him. Others regularly take me out for coffee, a walk, or a movie. Even a simple card in the mail, letting me know that I’m not alone, can make a big difference.

But because I’m a people person, I know that when friends ask what they can do, the onus is on me to tell them what I need. Often, the answer is quite simple: ask me how I am, and listen.

Life doesn't end when Alzheimer's begins. Learn how to be there for those who are #StillHere ►