When I arrived home from visiting Dad last night, Kate was on the phone with a person from tech support for the software that she and Ken are using for the the family album. When she finished, she seemed especially frustrated and said that she would be glad when this album is finished. Then we went to Chipotles for dinner. I commented on her frustration and asked if she had been able to recover a file that she had lost. She had not. In an effort to understand and possibly help her, I asked what she had tried to locate the file. She said she didn’t want to talk about it. This has become a very common pattern. She doesn’t understand what she is doing and can’t remember things she has done; so she is unable to communicate them to me which makes her more frustrated. I apologized for asking and said that I understood it was a problem for her, but I found myself reflexively trying to solve the problem.
All of this is back to what I wanted to say today. She finally said this had been a particularly depressing week. When I asked if there was anything particular that had happened, she just said that her brain was just not working the way it should. This conversation made me recall my mother’s frustration in the early stages of her AD when she would say, “I don’t know what’s happening to me. I just can’t remember anything anymore.” In the early stages people with AD know there is a problem and are frustrated. It is only in later stages when they are not bothered. I hope that is a long way off for Kate because when that point arrives, she will be different in other ways that she does not want (i.e., more dependent, less in touch, more obviously suffering from AD).
We have still not told anyone of her diagnosis and don’t intend to do so until some undefined later point. That will probably come when it is beginning to become more obvious to others that something is wrong.
Yesterday I had another of those experiences in which I got frustrated with Kate. We planned to go to a movie at 5:30 yesterday afternoon. For that reason I got out to see Dad a little on the earlier side and left Kate at my office where she was working on her photo albums. I let her know that I would come back to pick her up at 5:10 so that we could make the 5:30 movie. Knowing that she doesn’t remember time very well, I called her when I was close to the office and told her where I was so that she could be ready. She asked me to call her again when I got closer which I didn’t do because I was already practically there. When I arrived (5:09), I called her from the car to let her know I was there. She said she would close up her computer and be right out. It’s not that she took a long time, but it does take a few minutes for the computer to shut down and then for her to get her things together. When she got in the car, I said something about her not being ready and then said what I wish I could take back, “You’re hopeless.” Now I am suffering guilt for not being more understanding.
Recently I have become more aware of her loss of short-term memory. Two or three times in the past few months, she has completely forgotten something we had talked about the night before. I don’t simply mean she had forgotten the facts or details; she didn’t even recall our having a conversation.
She continues to misplace her phone, keys, glasses, etc. I would like to get her an iPad because she has had such problems with her computer; however, I am concerned that she will leave it some place.
Just a quick update since the last entry. Last week for the first time, I found myself being a little bit bothered by Kate’s forgetfulness. In addition to the usual things that happen, phone misplaced, plans forgotten, etc., two small things actually led to my not being understanding the way I have been. What I mean is that I intellectually understood, but I was emotionally bothered anyway. Here is what happened.
First, she didn’t make any effort to get ready for the visit of our friends, the Robinsons, this past Wednesday. Normally, she might work to get the house in the best shape possible. She arranged for the person who helps her with landscaping to come over at 10:00 that morning even though the Robinsons were due to arrive between 11:00 and 11:30. Then she stayed outside working with her longer than I thought she should have. I went out at 10:30 just to remind her of the time and that they were coming as early as 30 minutes from now. She ultimately came in closer to 11:00. She wanted to scoop up some things that were in the family room and dump them on the floor and chairs in our bedroom and to close the bedroom door. I told her I felt it looked better to have the door open. She accepted that and put things in our bathroom and closed that door.
The other thing involved her completing a letter of recommendation for a local college student’s application to PEO for a scholarship for the fall. This is something she was supposed to do at least 2 weeks ago. She was going to do this before her PEO meeting on Thursday morning. The first complication she ran into was that her computer “died.” That meant she needed to use mine. Her time ran short. She decided not to go to PEO and to come to my office to work on the letter. It took her almost until lunch to get to the office. Then I was going to lunch and she went with me with plans to work on the letter after lunch which she did. I left to go see Dad around 4:00. When I got home after 6:00, she was not there. I called and reached her on her cell at the office. She was still working. When she was ready to leave, she couldn’t fine her purse. I suggested she call the restaurant where we had eaten lunch. She did so and got the purse. (The week before she misplaced her primary car keys and is now using one of the backups that I had made the last time she had lost her key).
Although I thought the letter was essentially finished and all she needed to do was mail it, she worked at the office Friday afternoon. She needed help getting it printed and checked and rechecked the letter and the student’s written statement of need. She found this difficult and was very frustrated. I said that in the future she might try to minimize her doing things like this. She said she had been thinking the same thing. This is another recognition of the impact of AD. By that point, I found myself more sympathetic and haven’t felt anything but acceptance of the situation since.
I just got an email from Kate and here is another illustration of confusion. At lunch she said she had to get money for our housekeeper who had said we owed her for last week and this week. When she went to Doris to pay her, she found that she had misunderstood Doris. We had already paid her for last week before we left for Edinburgh.
We got back from Edinburgh Tuesday night, 6/1. We had a great trip. It was just what I had wanted it to be. Being with Kate 24 hours a day for 10 days gave me a better opportunity to see how she is doing. The only thing worth commenting on is that it reinforced my awareness that her short-term memory is poor. She often forgot things I would have told her only a few minutes earlier.
I continue to notice that she gets a lot of things wrong. For example, she told me a movie started at 6:00 last evening. We got there just before that time and discovered that it started at 5:30. Another example: we have tickets to a play at a local theater for tonight. She had it on her calendar for tomorrow night. These are mistakes that any of us might make; it is just that she makes them regularly. It means that you can never trust that what she says is correct.
One other thing to report is that I saw a movie on the return flight from Amsterdam entitled 1776 Stories of Me and My Wife. It is about a Sci-Fi writer whose wife has cancer. He decides to write one story a day for her as a way of boosting her spirits. His feeling for his wife hit so close to home that I was wiping tears from my eyes for the last 30-45 minutes of the movie.
I also had trouble sleeping one night in Edinburgh and found myself thinking about Kate’s AD and her impending decline.