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.
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.
Yesterday morning as I was leaving for church, I noticed Kate sitting on the bed looking just a bit sad. I asked if she was all right. At first she said fine and then she said that she had had trouble putting her pills in the pillbox for the coming week. I know she was seeing that as another sign of her AD. This followed her losing some clippers in the yard. She went to Lowe’s on Saturday and bought several new clippers as well as several pairs of gloves.
Later in the day she mentioned that she had been unable to find her debit card which has been missing 2-3 weeks. We drove her car to lunch and looked around the front seats and found it. I said, “I know you feel better about not having to go to the bank and tell them you needed a replacement.” She said it was not that so much as the personal feeling of knowing she had lost it.
This past Thursday, Kate had a bad day. I had realized it in the afternoon sometime when we spoke on the phone but didn’t know what was wrong. When I got home from seeing Dad, she was lying down on the bed with the TV on. She didn’t want to talk at first and I backed off. Ultimately, she, of her own volition, told me that she thought her hairdresser “knows.”
I seem to recall that she had missed an appointment on Tuesday and this was a rescheduled appointment on Thursday. Instead of seeming to be annoyed, they were very understanding and kind. When she left, they said something like, “We love you.” Over the past few years, they have become accustomed to her missing a fair number of appointments. She suspects that they are just now putting it together. She was down only that day and evening. She seemed fine the next day.
In the meantime, she continues to show signs of forgetfulness. This most commonly involves the misplacing of something – her phone or something else. I am facing this from 2 sides , Kate and Dad. He is regularly “losing” something at his nursing facility. Typically he can’t find his phone. That happened over the weekend, but he found it in his top drawer. Yesterday when I started to put his bridge in his mouth before dinner, it was missing. I decided the dentist had come by and taken it to make an adjustment since I had left a message for this yesterday morning. As it turned out, Doris, who washed Dad’s clothes yesterday, found his bridge in one of his pants pockets. On the way to dinner last night, Kate told me that was the good news. The bad news was that she can’t find it. She looked all over. This morning she called Doris who told her she was sitting in a chair in the bedroom when she had given her the bridge. Kate went to the chair and looked all around it and found it on the floor.
Just as typical are the issues with the computer. She can’t seem to understand and recall how she downloads books from the computer to her Nano. I feel confident other things are happening with the family album she is working on. It is bound to be taking her longer to complete it because of this.
We are having lunch together today and going out to a benefit tonight. I try to keep us as active as possible and we have been more active since the diagnosis. In the next 10 days or so before we leave for Scotland, we have several events. I like to think this is good for her.
This morning I noticed that Kate was up and could see through the sliding glass doors from my view in the kitchen that she was working on the top drawer of her end table. I went in to say hello since she is rarely up that early (about 7:15). She was cleaning out and organizing her top drawer. The only reason I point this out is that for several months she has been trying to put more order in her life. She has worked on cleaning out closets and drawers, etc. I suspect this is a reaction to her feeling of a loss of control over things. She missed a meeting yesterday morning with a PEO. Kate had written it down for today instead – something she has done frequently over the past few years.
Nothing too eventful has taken place since my last posting with respect to Kate’s AD. She did call me yesterday to tell me that she had missed another hair appointment. This has occurred a number of times over the years even as recently as a few weeks ago. She gave me the time of the new appointment and asked me to keep tabs on her hair appointments. She will, of course, do so herself, but I will be her backup in the same way that I am for her medicine.
As we were headed to dinner last night, she told me that she had encountered a problem on her Facebook page. When I tried to explain what might have happened she got frustrated and said she wouldn’t understand it anyway. I understand, but at each moment when she brings up something like this, I forget and proceed with an answer that she can’t understand. I trust I will get better with time.
Just got a call from Kate. I had missed a call from her about 30 minutes ago. I sent her a text and asked if she were all right. Thus her call. I asked where she is, and she said she was headed back home. Then she asked where I was and what I was doing for lunch. I told her I was lunching with her. She asked where she could meet me. I said, “How about Casa Bella?” She said, “That would be great.” I asked her to stop by the office and we could go together.
She was obviously distressed. I fear that she either got lost on the way to the meeting or she did something embarrassing at the meeting.
Last night Kate and I went to a movie at our local arts theater, Olympia. When we got home she started to put Dad’s clothes in the washer. Then she discovered that the washer had clothes in it. She had turned the washer off when we left for the movie. I saw her do it but thought she was setting the washer for washing Dad’s clothes upon our return. She couldn’t imagine why she had turned the washer off. She said, “I don’t know what’s happening to me.” This is another indication that she is getting back to looking at life normally and not thinking about AD all the time.