The Joy of Living with Alzheimer’s

Whenever I tell people that Kate has Alzheimer’s, I see a shocked look on their faces. Their words match their faces. All one can think about is the horror of the disease. I understand. I was in their shoes when Kate’s doctor gave us the diagnosis. That was almost eight years ago. I’ve learned a lot more about the disease during that time. I still recognize the sad aspects and never intend to deny them in my posts. They are real, and I am about to experience more of them as Kate approaches the late stages of the disease.

When I began my journal, my intent was to document our journey. I didn’t know what it would be like, but I thought there might be other people in our shoes who could benefit from our story. For me, the most important thing I have learned is that the enjoyment of life does not end with the diagnosis. Life has changed, but Kate and I continue to be active. Even now as her memory fades and confusion is common, we have many good moments.

One of the other important things I have learned is something that helps to explain why we have gotten along so well. I credit Judy Cornish and her book, The Dementia Handbook. Let me briefly summarize the point she makes for those who are not familiar with her book or my posts about it.

Cornish talks about two general categories of abilities that everyone possesses, those that are “rational” and those that are “intuitive.” Rational abilities include the kinds of things we learn in school like the names for people, places, historical events, and procedures for accomplishing specific tasks. Rational thought or abilities are very important, but not everything.

Cornish gives special attention to our intuitive abilities. These involve our ability to directly experience the world around us via our senses. Her point is that dementia has its greatest impact on our rational abilities. When people with dementia lose their memory, they lose the facts, figures, names, and procedures that they have accumulated over the years. Much of our everyday life depends on this kind of knowledge. That’s the bad news.

The good news is that much of the pleasure we enjoy in life derives from our intuitive abilities, and people with dementia retain those for a very long time, often near the end of life. This has been of critical importance to Kate and me. It has given us many happy moments.

I wish I could say that I had this knowledge or insight when we first received Kate’s diagnosis. I didn’t. I had no idea of the role her intuitive abilities would play in our lives. All I knew was that we wanted to make the best of the time we had together. We chose to do more of the things we always enjoyed. That included travel, musical and theatrical events, and being with friends. As her caregiver, I took the responsibility of organizing our lives around these things, and we have both been happy.

Over the years I have experienced a change in what gives me pleasure. It is not that I experience any less pleasure from all the other things we have done. It is that I now derive just as much pleasure from seeing Kate enjoy life. There are lots of these things that bring me pleasure. Most of them are little things that mean a lot.

One of those is her sense of beauty. She often comments about the beauty of the trees and shrubbery we see everywhere. That frequently involves the dense growth of trees and brush on our neighbor’s property behind our house. Sometimes it is driving along a highway or the streets here in Knoxville. It also includes the jigsaw puzzles she works on her iPad. She often asks me to look at puzzles she thinks are particularly beautiful or cute. The latter usually involves cats or kittens.

Kate also enjoys her family photo albums. I enjoy watching her leaf through the pages and hearing her comments as she goes through them. That is especially true of the “Big Sister” album her brother Ken made for her. She loves the cover photo of the two of them when they were about four and two. I also enjoy sitting down beside her and going through the album with her.

Recently, she has talked about the beautiful lights she sees at night. Many of these are Christmas lights, but just as often they are the headlights and taillights of the traffic we pass. Often lights obscure what would otherwise be rather mundane retail stores. The other night we walked by a wig shop that is next door to the place we get pizza. She commented on how beautiful it was. I would say it’s a pretty tacky shop in a strip center that is also tacky. It’s hard for me to see the beauty, but I enjoy seeing her enjoy simple things like this. She also takes more pleasure in sunsets than she used to.

She has always taken an interest in small children and babies. That has increased since her diagnosis. She almost always comments on the children she sees when we are out. When we are entering or leaving a restaurant as she did this past Sunday, she frequently stops to speak to a child and the child’s family. She always tells the family that they have an adorable child.

I find that she is less critical in her evaluation of musical and theatrical performances. That’s a good thing in that it enables her to enjoy performances that she might not have enjoyed as much in the past.

Last night I pulled up a series of YouTube videos of Christmas music by the Tabernacle Choir. This was one of those time she was so drawn in by the music that she put down her iPad. That doesn’t happen often. She was happy. I, too, was happy, not just because of the music, but I like to see her happy.

I am also touched when she seems to recognize me and express her appreciation. Yesterday morning she got up early to go to the bathroom. I took her and brought her back. As I pulled the covers over her, she said, “Thank you. You always know what to do.” I said, “I love you.” She said, “I love you too.” She paused and said, “What’s your name?” I found it touching that even though she couldn’t remember my name that she was still able to retain her feeling for me.

During the evening and when we went to bed, she seemed to recognize me as her husband. She didn’t ask my name except once at dinner. When we went to bed, I told her I love her. She said the same to me.

I consider all of the experiences above as good ones. They are the kind of things that make me say we have been able to live well as we live with Alzheimer’s. And all of them can be enjoyed at a time in our journey when Kate’s rational abilities are almost gone. I’m looking forward to more good times.

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