I am nearing the end of Jan’s Story, by Barry Petersen. It is an account of their lives during the time of Jan’s Alzheimer’s. As I may have said before, the title is not the most accurate. It really should be Barry’s Story or Our Story. This is my second time through the book. This time I have connected with it a little more. That relates to the progression of Kate’s disease. I can easily relate to many of the details (symptoms) that he describes. Of course, each person’s journey is different; so not everything is identical. Still, I found it comforting to listen to. I think this is especially so because I have told no one other than our pastor, about Kate’s diagnosis. I continue to believe that even the number of people who suspect couldn’t be more than a handful. I recognize, of course, that those who suspect have told others. No one, but our pastor, has given me even a hint of sensing something is wrong. I take that back. Our associate pastor said something that made me think she knows.
One of the things that struck a common core was the dysfunctionality of Jan’s behavior. That was the earliest sign that I had that something was wrong with Kate. I recall that she had her own suspicions very early, before I suspected. Barry talks about learning to bite his tongue when he saw her doing silly things. I am trying to do the same. This book has given me a additional motivation to do better. I have noticed recently how much Kate is bothered by my looking over her shoulder and telling her what to do or that she has done something wrong. This is hard. Intellectually, I already know this is something that she cannot control. That means there is no good to come out of correcting her.
Some things are a particular problem because of my own personality. For example, she is not good about rinsing dirty dishes. Yesterday, she left a used container of yogurt on the counter. When I came in from Dad’s yesterday, I saw it and that it was covered with gnats. I rinsed it and put it in the recycling. I didn’t say anything to her because this is something she won’t be able to change. This means I have to check behind her a good bit. That’s easy for things like the yogurt container because it was in plain sight. The problem comes when she might put something in a place I might not see it.
Interestingly, I don’t see any signs that she tries to hide her deterioration. For example, yesterday after we returned from Gordon Seacrest’s burial, she came to me with her earrings in hand. She said, “Look what I did.” She had worn an unmatched pair of earrings. I just gave her a hug and said that no one would have noticed. Later yesterday as we were walking up to the Seacrest’s house for dinner, she noticed stains on her pants. I am noticing many more examples of her not being as concerned about her appearance as she used to be. She goes out in things that have a few spots. This means I need to pay more attention before we leave so that she is able to change.
Petersen’s book utilizes Alzheimer’s 7 Steps as a marker for some of the chapters as he details where Jan is at any given time. That made me go to the Alzheimer’s Association website last night and take a look at the steps. Based on the descriptions, I would say Kate is somewhere in Steps 3 or 4. These things are not precise, and I am not concerned that they be so. We still have a long way to go.