I wanted to start this piece off by telling a story about two caregivers; my mom and I, who were thrown into the difficult world of Alzheimer’s care.
My Papa was an intelligent and gentle man. He was a mechanical engineer who had worked all over Canada, including the Arctic. He designed his own sailboat, restored numerous cars, and even built and flew his own biplanes. To our complete surprise, he was diagnosed with Alzheimer’s in his early 70s, and the disease progressed rapidly. We witnessed his cognitive decline on a daily basis after we relocated him into our family’s home. All of a sudden, he wasn’t the forward-thinking engineer I’d known all my life. The disease robbed him of his ability to comprehend the things he previously adored.
So what did we learn?
My mom and I both realized we needed to keep his mind active. It was as basic as handing him a rake while we were gardening to make him feel productive. Or looking through old photos and seeing how happy he gets when he recalls the planes he built and flew. Or, just sitting with him and enjoying a hot cocoa while gazing out at the ocean. There were some difficult times, but we never felt so close to him. We realized that it didn’t matter to me that we were hearing the same few stories over and again; what mattered was that he was engaged. Alzheimer’s disease can change a person’s personality, but not Doug’s. He remained as sweet and kind till the day he passed. When I think about my Papa, I remember the times we spent at home, together. Everyone should be able to care for their loved ones in the comfort of their own homes. I only knew my Papa for a short while, yet 11 years later, his Alzheimer’s journey shaped me into the person I am today.
My tips for other caregivers
Keep Talking, Keep Listening
- It will feel like a one-sided conversation at times, but keep going. Talk about shared memories, what you had for lunch that day, or plans for the weekend. If I ran out of my own words sometimes I would read books to my Papa. As a retired engineer, he particularly liked the Guinness World Record books which has big pictures and I could read the descriptions.
Don’t Exclude, Adapt
- Just because you know they can’t perform tasks as they used to, doesn’t mean they can’t participate. Include them when making dinner, doing yard work, wrapping presents, etc. You get more quality time together and they feel included.
Their World Matters
- I think every caregiver has heard the phrase “join them in their world” and I stand by it. Unwillingness to do so leads to anger and confusion. What they say might not make sense in your world, and that’s ok.
I Never Said it was Easy
- 11 years later, I can still remember days when I didn’t want to come home. I wanted to stop crying because the journey was so heartbreaking. But, as a caregiver, we all find ways to adapt. I started journaling and my mom took up running.
Nearing the End
- Every Alzheimer’s journey is different, and it’s impossible to say what you can do for your loved one when they’re near the end. For us, it was simply holding his hand, letting him know we’re there and making sure he was comfortable. No one can prepare you for the end, or for the mixed and confusing feelings of sadness, guilt, relief and anger. The end is only the beginning of another journey, one of self-care and self-forgiveness.