I think most caregivers have an interest in how their experiences compare to others. That is certainly true for me. Since Kate’s diagnosis, I have read quite a few books written by other caregivers or people with dementia. The stories and the ways in which they are told are very diverse. I always take special note of both the similarities and differences between their experiences and my own. In general, our story has involved fewer struggles and complications than the ones I have read about.
Last night, I started a new book, Mike and Me, by Rosalys Peel. I was immediately struck by several ways that her experience with Mike was like Kate’s and mine. It’s far too early for me to comment in detail, but one thing stands out. It sounds like their relationship and approach to living with Alzheimer’s is very much like our own. From the outset and the end, they were committed to taking advantage of their time together. They knew there were many aspects of the disease that were beyond their control. Their focus was on those things they could control.
Their story provides an optimistic perspective on a disease that brings with it a host of challenges and adjustments for both the PWD and the caregiver. There have been times when I felt I didn’t want to talk or write about our experiences because we have gotten along so well. Many caregivers gain support and encouragement from the struggles of others. I learn from those. They help me appreciate our own situation, but I draw my greatest support from those who have successfully maneuvered their way through this disease. Interestingly, Twitter has introduced me to many of those stories. Mike and Me is one of those.
PWD are not all alike. Neither are their caregivers. Despite the immediate connection I feel with their situation, I suspect (too early in the book to be sure) there is a difference between Kate’s approach to her diagnosis and Mike’s. Kate has always wanted to be private about it. It’s been 7 ½ years, and she has only told two other people about her diagnosis, her brother Ken, who also has Alzheimer’s, and her best friend Ellen.
Except for the first few months after the diagnosis, she has not talked with me to any extent about it. At first, we had conversations that involved how we felt and how we wanted to respond to it. For several years, she made passing reference to it. I don’t think I have heard her say anything about it for more than a year or two. I seriously wonder if she recalls that she has AD. My natural inclination is to talk about how she is feeling. I can only infer from her behavior. I’m able to tell when she is up and when she is down. I’m glad to say that she has many more “ups.” That is especially true during the past couple of years. In the early stages, she experienced frustration which prompted her low moments. It appears that she no longer associates her behavior with AD. Thus, there is no frustration that I can detect.
Kate’s choice has been to simply live her life as normally as she is able. That may have turned out to be a good thing. She hasn’t let AD dominate her life. That is definitely the case at this stage of her disease. We still enjoy life and each other. She’s happy. That makes me happy.
