The big thing in our lives right now is Dad’s 98th birthday party which we are having at our house this Saturday, the 29th. In connection with our preparations, I have had several observations related to Kate. First, she has really wanted to have the party and to work hard to be ready. At the same time these things introduce frustrations that would have been different in earlier times. For example, she decided to do 2 collages of photos to display in a frame during the party. One is of Dad with his family; the other with friends.
This seems straightforward enough and falls within the kinds of things that she likes to do. However, we have had to take pictures from my computer to upload to hers which introduces some frustration. She can’t remember where she loaded pictures. As she was working on the collages last night, she exclaimed how confused she was. I told her not to be too hard on herself and that she knows this is something she can’t control. Even as I said this, I recognized that this is a simple thing to say but difficult to do.
Last night she was trying to dial the phone number of one of her PEO sisters and kept misdialing. She ended up giving me the phone to dial.
She is also planning to host a PEO dinner on December 10. Fortunately all she will have to prepare is the chocolate mousse, but there will be lots of things to do to have the house ready for this group.
She has also indicated a willingness to host our music club for its February meeting. I love the fact that she wants to do these things, but it concerns me that it introduces too much frustration in her life.
Life has been a little hectic lately; so I sometimes find it hard to jot a few notes at the time I want to. Here are a couple of things from the past few days.
Last Wednesday Kate had a routine appointment with Dr. Reasoner. I had asked her if she wanted me to go with her. She said she was fine. What she didn’t consider was getting lost. I told her how to get there, and also told her to use her GPS. We had eaten lunch across the street from my office, and I walked back to the office while she went to the doctor. A short time later she called saying she was lost. I asked where she was, and she was able to tell me she was “by” the University of Tennessee Medical Center; so I knew she was close. However, as I pressed, she couldn’t tell me more precisely where she was. I got out my iPhone and opened the GPS. Between her telling me about street signs and my looking at the map, I saw where she was and guided her step by step to the building.
The next day she was going to Dad’s condo to dry clothes since our clothes dryer is not working. Although she has been there many times, she got lost and had to use the GPS to get there. She was headed there going north and went past the turn and found herself a few blocks away where she turned right. It was a few blocks later that she realized she was lost and needed to use the GPS.
On Saturday when she had forgotten or lost something, she said, “”At least now that I know that I have Alzheimer’s, I have an excuse.” She is having many experiences where she can’t recall where she has put things, where she is supposed to go, what time she is going someplace, or that she is going someplace at all. I am trying to remind her of some things. I do best at reminding about social engagements. I am not doing well in making sure she remembers to take her purse with her from a restaurant, etc.
Yesterday I met with the communications committee of the United Way. I sat next to a former client and learned that his wife has dementia. I asked how long they had known. He said a couple of years. Then he said it had been less than that. I asked if she was aware. He said that the doctor had told her when he gave her the the MRI diagnosis but that she does not seem to know or pay much attention now. He indicated she is happy and that they are getting along all right. The conversation, however, was sobering for me in that it added fuel to my existing fears that in 1-2 years we’ll be further along on this journey than we had hoped.
One final thought. A few minutes ago Kate and I were making plans for the day when she said, “Just tell me what to do.” This is something she says frequently, and I am trying to learn not to throw too much at her. My interpretation is that she is facing so much frustration over losing things and not remembering things that it is too frustrating for her to attempt to rationally work out a plan for almost anything.
Last night after leaving the visitation for a church friend, Kate and I planned to meet at Panera Bread. This followed a terrible thunderstorm during the visitation. As we came back toward Panera, she and I got separated (we were in separate cars). The power was out along the street leading to our home. I went home to wait and then went back out to look for her. Before going too far, I got a phone call from Kate saying she was at Chalupas; so I went to join her. I discovered that she had thought I had said we would go to Chalupes if Panera was not open (which I had not said at all). When I got there, she told me she had accidentally gone past the restaurant and realized it sometime down the road and had to turn back. In turning around she had run over a curb and thought she might have damaged the car (though I don’t see any signs of damage).
Over dinner she told me she is beginning to lose confidence. I assured her that the confusion of the night and weather conditions made it difficult to see (which was true) and that it could have happened to anyone. She understands that, but I could tell she still thinks part of the problem is AD. She is seeing more and more signs of it as am I.
Yesterday Kate and I both recognized signs of confusion and inability to do everyday things. She couldn’t find her shirt that was on the back of a chair in the kitchen, she couldn’t find the power cord for the computer, she couldn’t handle some minor printing issues. At one point she said, “We know I’m getting worse.” I tried to comfort her, but there are aspects of this that I know are so personal that I am unable to relieve her burden only ease it.
We are in Jamestown, NY, having flown here (Buffalo then car to Jamestown) for our annual trip to Chautauqua. We will meet one of Kate’s PEO sisters who lived in Knoxville for a number of years. I thought of a couple of things. First, I did not mention that on Thursday of this week (7/28/2011), I was at lunch with someone from our church when I received a call from Kate. She was lost. She was in the car and had intended to drive to a neighbor’s house which is just around the corner from our house, but she didn’t remember exactly where it was. She wasn’t far from home or our neighbor’s house when she called. She seemed in a panic. She was able to tell me the street she was on. She followed my directions and got there. Later I learned that she was the first to arrive which relieved her.
Kate is directionally-challenged; so it is not surprising that she could get lost; however, since she was just going a very short distance to a location near where we have lived for 25 years, I take this as another indication of her AD.
I don’t know that I have commented on this before, but we have gone through numerous such experiences over the past couple of years. On one occasion she missed a PEO meeting she was going to because she traveled around so long she was embarrassed to show up. She just called to say that she could not make it.
I should also mention that Kate has been working on a one-page flyer to mail out to PEOs in the Knoxville area inviting them to a book chat with an author. She has had this essentially finished since Monday or Tuesday but has had to make some edits based on suggestions from a sister PEO. The point is that this is a small task, but it has taken her an inordinate amount of time because of simple mistakes. She has indicated losing a number of things that I think are text boxes. I know that the problems she has had with the family album she is working on with her brother are largely a function of problems like this. She doesn’t remember how to do things, how to correct things, and generally digs herself in deeper as she works. It is like 2 steps forward and 1 step backward which makes her very frustrated.