Like most people, I tend to look for explanations for why “things happen.” I think that is part of our natural curiosity. In addition, I have spent a career looking for reasons that people do what they do, why they change, and what they might do in the future. Since Kate’s diagnosis, I have tried to understand everything that is happening as well how to prevent and solve problems. The most important thing I have learned is how difficult it is to know what is coming next and why.
I’m thinking about this while at Panera. It’s 8:37, and we’ve been here about thirty minutes. This is about the third time we have been here in the last few days. In some ways, this doesn’t seem unusual to those who have read my earlier blog posts or those with whom I have talked about our almost daily visits here. Those regular visits declined over a year ago. I related that to changes in her sleeping. In turn, I attributed her sleeping later to the progression of her Alzheimer’s. For months our visits have been infrequent. What has made her get up earlier recently? Is this something that will continue for a while, or are these a few isolated events?
The answer to these questions is “I don’t know,” and that is the answer I have given for most of the changes that have occurred during the past nine years. What I do know is that Kate’s changes mean that I have to change as well. My natural tendency, however, is to continue doing what I have done before. I admit to being a creature of habit. The only thing that saves me is my desire to provide Kate with the best care possible. If that means I need to make a change, I do it. I don’t mean that making a change is necessarily easy. Each one comes with a measure of psychological discomfort. I like routine and predictability.
Early on, I thought that a writer like Neil Simon could have a field day writing about a couple like us, one with Alzheimer’s, the other with OCD. It really could be comical. On the other hand, I am pretty sure that even if a caregiver were not driven by a desire for order and routine, he or she would ultimately find it challenging to deal with the unpredictable changes that take place with this disease. I feel for those who can’t. I have read many posts on Facebook and Twitter and online forums in which caregivers rant and rave over the behavior of their loved ones. I know it can be very hard. My own situation is much easier because the relationship that Kate and I have now is a pretty good extension of what it was before. The major change would be her dependence on me, but she is generally cooperative and loving.
This morning was a good example. I keep a close eye on the video cam so that I can get to her quickly if she calls me or is getting up. I don’t, however, keep my eyes on it every moment. Today, I went outside to check the water level on our pool that has a leak. When I got back inside, Kate walked into the family room. She was looking for me.
It turned out that she had waked up and was ready to get dressed for the day. Of course, she didn’t know where to go or what to do. She was glad to see me, but she hadn’t panicked and was in a good humor. I apologized for not being there as she got up. It hadn’t bothered her. She just wanted her clothes. I told her I could help her. Then I took her to the bathroom to get the process started. When she started to brush her teeth, she asked, “I sure am glad you are here. <pause> Who are you?” When I gave her my name, she wanted to know “Who are you to me?” I told her I was her husband. She was surprised. I said, “Would you rather think of me as a friend?” She said no. During the next twenty minutes, we repeated this exchange several times. She was always surprised, but comfortable, with my answer. When I helped her dress, she said, “You know, you’re a pretty nice guy. I think I could like you.” I think that captures well what her attitude is like.
Now what does this have to do with change and adaptation? I’m about to tell you. This is the third day in a row that Kate has gotten up early. Each time it has been before or during my morning walk. I like that walk. It is not simply a time for a little exercise. I also listen to books. For me it’s a nice way to start the day before my responsibilities with Kate begin. After my walk, I work on my blog. When Kate is up early, it leaves me to find another time to write.
My point is that I like routine, and changes like her getting up much earlier change that routine. I’d rather not change. On the other hand, she was so nice this morning that I want to take advantage of the time we have to enjoy ourselves. That is a higher priority for me, especially at this stage. I may be having a harder time getting other things done, but it is a pleasure to have time like this.
An hour has passed since I started this post. We are still at Panera, and Kate is still working her puzzles. That’s an unusually long period of time without her getting frustrated. I have been helping her throughout, but she is doing better than she has done in a while.
Whoops, it is now 10:45. As I was in the middle of the previous sentence, Kate hit a roadblock with her puzzles. We came home where I will now close and upload this post.
Despite her having trouble and wanting to stop, she was still in a good humor and wanted to help me gather our things together to go home. Once here, she hit her recliner where she is resting. That’s a good thing because I have a noon lunch meeting at United Way. That’s an hour earlier than the sitter comes. I arranged for a church friend from to take Kate to lunch and get her back home for the sitter at 1:00. I have done that once before, and it worked well. This is a person who used to be on the staff at church when Kate was the church librarian. They ate lunch together frequently and have always had a good relationship though we don’t see her often these days.
While Kate has rested, I took care of a number of household chores. Those never end, and I am always behind. It’s been a nice morning. I am glad she got up early even if it meant no walk that I didn’t finish this post until now. Until next time, have a nice day.