Right now I am feeling like there are a number of things that I would like to comment on, but I also don’t feel I have sufficient time to devote to it now. Let’s see what I can do.
Follow up on the iPad. After getting the iPad, Kate spent a good bit of time on it. She was primarily playing free cell. When she got her computer back on Tuesday, she gravitated back to it. She is trying to complete her photographic piece on Brian’s trip to NYC. It is virtually complete, but as is characteristic of her, she can’t let it go. I also noticed the other night as she showed me what she has done that she has some photos out of order in terms of the way she wants to present them. Organizing things like this are a nightmare for her. I have offered to help her, and she has said she wants it but not now. For 3 days now she hasn’t even turned on the iPad.
I am reading Jan’s Story by Barry Peterson, CBS journalist whose wife has early onset Alzheimer’s. I discovered this book when I started looking about AD that I could download from audible.com. It is an interesting account of his experience with his wife and how they tried to adjust to her disease. I am about ¾ through right now and will finish over the weekend. I find it interesting simply because it is another person’s experience with a spouse with AD. I do find, however, that their situation, the way her symptoms occur, and his personality make this a different experience from my own. To be sure, there are commonalities – signs of forgetfulness and attempts to compensate or cover by the person with AD, denial that the person has the disease, etc. Here are a few quick observations. I may give others after finishing the book.
1. As his wife, Jan, goes through initial stages all the way to her being placed in a facility, there are striking symptoms that are serious in the early stages and normal kinds of behavior in the late stages. My observation of Kate is that the only dramatic thing I have been aware of in the earliest stages was her panic over being lost while driving someplace. Otherwise, it seems like she is going through a gradual decline in memory and ability to handle everyday tasks. I was surprised to learn that even when Jan went into a facility, she was able to appear somewhat normal to others apart from her husband. I am assuming that if and when Kate is in a facility, everyone will know of her condition.
2. It is easy to judge other people, but Barry seems to have let Jan live and function on her own a lot longer than I think he should have. I think she was well beyond where Kate is right now when he would travel out of the country leaving her alone. He did have friends come in to check her medications and see how she was doing. Right now I would be concerned about leaving Kate overnight. Of course, it is easy for me to judge since I am virtually retired, and Barry was younger and in the prime of his career.
3. I find his discussions of developing another relationship discomforting. I am aware that this is a topic of discussion among caregivers, but I don’t like to think of my doing this before Kate is gone.
4. The entire story makes me more comfortable keeping Kate’s AD from the world. We still have not told anyone except for our pastor, our attorney, and another attorney with State Farm who is representing me in a lawsuit over an accident from 2009. My reason for this is that if she is able to function well enough that people don’t know what good does it do to tell them. I do still wonder when we will tell the children. At the same time I think the answer is when they start seeing signs of her decline. I also feel like this is in Kate’s best interest. She doesn’t want to be a martyr nor does she want to be a leader in a campaign to promote greater awareness of the disease. She is a more private person. She just one to be a regular person.
Right now I am wondering what she will be like next summer and how our visits with our children and grandchildren will go. This week I booked a house in Jackson Hole where the 3 families will celebrate our 50th wedding anniversary next June. Will the children notice anything after a full week together? We will see.