Kate and I are leaving Thursday for Fort Worth for our 50th TCU class reunion. I just got an email she sent to the secretary of our music club. In it she says she is free for a meeting this Friday morning or Monday morning. I called her to remind her that we will be in Texas both those times. She had forgotten. She repeatedly forgets the moment to moment things although she remembers many things from the past. These must be troublesome things for her. In fact, although we don’t talk specifically about AD, we have so many of these experiences that she doesn’t have to say anything for me to suspect how frustrating it is for her.
The other day she had some simple problem on the computer, and she said something about “This is going to be a long road.”
I bought new phones at the house about 6 weeks ago. One has been missing for at least 2 weeks. We have remotes that go with each TV in the house. They are not interchangeable. The one in our bedroom disappeared a few weeks ago; so we borrow from another one when we need it, but it won’t do all the same things the correct one will do.
Quite a while ago I mentioned that Kate had asked me never to use “that word ‘remember.'” I feel like I have tried to honor this request, but I have failed miserably. It is amazing how conditioned I (we) have become to automatically saying that when someone fails to remember something we told them. Normally this is not a big problem, but with someone who has AD, it is. That is because there are so many instances of forgetting something that has happened or something you have told them. It seems particularly difficult because for a long time, the person does remember so many things. These instances of remembering reinforce that the person is normal. Our expectations then are that she should remember everything.
I have been unusually sensitive to this pattern in recent months, but I continue to say, “Don’t you remember?” or “I told you . . .” When I do this, I feel guilty because I know it is a constant reminder that she cannot remember. At least she does not ask me not to say this. I feel confident she does not remember telling me not to say this. Last night was one of those moments of confusion. I had reminded her the day before that I had a meeting of the executive committee of our music club at 6:30 pm and that it might be a long meeting since the first one had been long. I must admit that I was never too specific about this; so it may have been clearer in my mind than hers. Nevertheless, she thought I would be home much earlier than I was and got worried. She had envisioned that we would spend a quiet evening together following all the activity of the past few days. The reality was that I didn’t get home until 8:30, and we still hadn’t eaten dinner.
As I have said before, this forgetfulness is getting worse. It makes me wonder when the children and others will notice. I suspect we will get along without revealing her forgetfulness when we are with our children at Thanksgiving and Christmas, but next summer in Jackson Hole for a week is another thing. I hope for Kate’s sake, they don’t notice.
Another issue that Kate is facing (and I along with her) is a loss of self-confidence. She is learning not to trust herself because she knows she makes so many mistakes. Last evening her computer was not working after she had supposedly charged it. I asked her to bring me the power cord. When I tried to plug it into the computer, it wouldn’t go in all the way. I got mine, and we charged it. This morning I looked at her power cord to see if I could identify the problem. When I did, I discovered that the slim metal connector in the tip of the cord was bent. A couple of months ago we had to buy another power cord because the first one was broken. This happened because Kate lies in bed or sits in a chair with the power cord attached. The way she holds the computer it often presses up or down on the end of the cord that is attached to the computer causing the connection to fail. When I found the problem this morning, I was able to straighten out the slim metal connector, and it worked. I reminded her how that happens. She said she already knew and looked hurt because I was telling her. I said, “I know it seems like I am always correcting you. I’m sorry.” Then I said, “It must seem like everyone is always correcting you.” She nodded yes. To me this is a further indication of the small ways in which she is feeling less confident and confused about things.
This past Saturday we had Dad’s 99th birthday party at our house. We had a total of 58 people on a beautiful, sunny day. Kate and I both had a feeling of relief yesterday. She was absolutely worn out. We both went to bed around 8:30. Besides the weather’s being great, everyone seemed to enjoy the party, especially Dad.
We did quite a lot in preparation for the party. We painted the outside of the house, had some electrical work done, got a new rug for the family room, bought a new love seat for the family room, cleaned up the garage, did more than the usual cleaning of the house, and Kate did a lot of work outside with her plants. All of these things needed to be done anyway. The party was just a catalyst to do them now. Of course, they don’t include all the things directly related to the party like invitations printed and mailed, selection of a caterer and menu, decisions about handling the crowd outside, inside, and what to do if it rains, etc. I don’t like managing details, and event planning is far from my strength. With all this done I can now focus on other things for a while.
Kate’s AD had quite an impact on me during the preparations and during the weekend, but I don’t think anyone else would have been aware of her condition at all. There are things that came up that could have potentially alerted someone, but to my knowledge nothing gave her away. One time she came to me as we were preparing to serve dinner to the family Saturday evening after the party. She took me aside and whispered in my ear, “Where do we keep the wine glasses?” I got them for her, and no one knew.
I was aware that the preparations put her under a lot of stress. I felt a lot of stress myself, but it must be double or triple that for her because of insecurity that comes from her inability to think clearly and to remember the many details required to pull off something like this. One of the things that was troublesome to me was her focus on her plants and landscaping when I felt we should be focusing on more basic things like the cleanliness of the house. I also felt the load was completely on my shoulders. She gets flustered by making decisions, and thankfully, defers to me for most things. That meant that she did precious little to manage any of the little things like meals for our family. I do wonder if people notice this. She has just bowed out of the routine things she would have done in the past.
Here are 2 examples of the types of memory problems that are occurring regularly.
1. For several years we have used our house as a periodic B&B as a fundraiser for Kate’s PEO chapter. Last night and tonight we are hosting 2 ladies from Erie, PA. We got the call about this B&B approximately 4-6 weeks ago. Last week we received a reminder call. Kate and I talked about it, and she added it to her calendar. On Tuesday evening she called our housekeeper to ask if she could come yesterday instead of tomorrow to help her get ready for our guests. I reminded her it was Wednesday and Thursday. We got a call from one of the guests who said they would be in around 1:00 pm or so on Wednesday. I communicated this to Kate. When I got home from the office around noon, she was trimming the shrubs outside. I said, “You must be feeling pressure.” She asked why, and I said they would be here soon. It turns out she was thinking it would be Thursday and not Wednesday when they would arrive. She then did begin to panic.
2. Sometimes she indicates she wants to do something and then forgets about it. For example, she is working on an update of the neighborhood directory. This was prompted by a request from our new neighbors. Knowing how long it might take her to do a complete revision of the directory, I suggested she just send a copy of the existing directory. She firmly resisted this. I dropped it. Then I saw the neighbor on Sunday morning as I was walking. He mentioned the directory, and I told him Kate was making a revision right now. He said he would like to have one just as it is. I told Kate, and she said, “No problem.” And got one for him.
While I believe I am living in the present much more than I ever did, that doesn’t mean that I don’t think about the future. Yesterday as I walked down the hall to see Dad, I passed by several of the residents that I see every day and thought “that is what Kate will be like some day.” Rarely do I actually get an image or even think of her in that condition. What is normal is for me to simply try to do things now since we may not be able to enjoy things in the same way some time in the future. The best example of that is my plans for travel in the next 8-9 months. We will be in Fort Worth November 1-5 where we will celebrate our 50th TCU class reunion. Dec. 5-12 we will be in New York. Feb. 24-March 16 we travel to Peru and then the Galapagos Islands. June 13-22 we will be in Jackson Hole with our children and their families. Finally we will make our annual trip to Chautauqua July 18-27 with a 2-night stay in Niagara-on-the-Lake. I am looking at these trips as a celebration of our 50th wedding anniversary that occurs May 31.
All of this takes money, more money than we receive in income; so what that means is dipping into our reserves. Over our entire married life, we have rarely done this. My justification for doing it now involves my concern that after next year, I am not sure how much special travel will be in the cards for us. I hope that Kate will continue to appear normal to others a year from now, but I am suspecting that the children might notice something different about her when we spend a week together next summer. I also am wondering how many more times we will take care of the grandchildren. If I have to take care of them and her, that may be a problem.
Kate’s short term memory continues to worsen. She tries to write down all of her obligations and to share them with me so that I can remind her. We are doing a good job with respect to her hair appointments. She is now making her next appointment at the time she goes for an appointment. Then she gives it to me, and I put it on my calendar. I don’t put down everything and don’t always remember to remind her. Last Friday, for example, she was to meet a PEO sister to interview a candidate for a scholarship or grant. We had talked about it on a couple of occasions. It turns out that I got in a rush and didn’t remind her of the appointment although she had remembered it that morning. That evening when I asked her how it had gone, she was shocked as she realized she had forgotten to go. This kind of thing on a less important scale happens daily.
I am gradually taking over more and more responsibilities in connection with here tasks. She still works on the computer, iPhone, and iPad, but she needs help with many things she does on these pieces of equipment. If she accepts some responsibility like arranging refreshments for our music club, I feel I need to make sure that it gets done. Early last week she finished and sent Brian a pictorial account of our trip to NYC in July. It is something she should have finished rather quickly, but it takes her a long time. She revises and revises and then she forgets about it for a while. The same is true with other photo albums she is working on for us. The good news is that it does give her something useful to do, and there really is no deadline.