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Clothes Are Often a Challenge

I am writing this from Panera. About 10:00 Kate said, “Let’s go to Panera.” Fortunately, I had just finished labeling a set of photos I had scanned yesterday. It was a good time to take a break. I could tell she was eager to go. I went back to our bathroom and noticed that she had not taken her medicine. I got the pills and went back to the kitchen. In addition, she had not combed her hair at all. I mentioned that we would be going directly to meet friends for lunch. She had forgotten and wasn’t dressed the way she would have wanted. She was wearing her old, dirty yellow sweater. I asked if she didn’t have another one she could wear. She told me to go find one. I looked for the one I had recently bought her to replace the one she always wears. I looked but didn’t find it. I brought her leather jacket to her. It is also soiled. She didn’t want to wear that. Ultimately, she wore the yellow one.

About 10 minutes ago, she asked, “Are we going to Belk’s when we leave here?” I told her we were going to meet our friends and asked what she needed. She said she wanted to buy a bra. I asked her about the two that we had bought last week. She didn’t remember and didn’t know where they are. Thus she is not wearing a bra.

She was quite frustrated as we were leaving the house. I took this as a sign of frustration with herself over her inability to keep up with “things” (clothes, iPad, etc.). To be continued.

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Kevin’s Visit

Last Friday night Kevin arrived for a long weekend visit with us. This is the third time he has come to visit us without his family. I hasten to add that nothing is wrong at his home, he has simply wanted to take advantage of the time he has with Kate. His plan is to visit twice a year. His first visit was last March. The second was in September. Assuming he sticks to this schedule we will see him here again this coming September.

The first thing to report is that it was another good visit. We went to one of our local theaters on Saturday to see Peter and the Starcatcher. We had dinner at Casa Bella beforehand. The dinner was good. The play so-so. Nonetheless, it was fun being together. Sunday we all went to Sunday school and church. In SS I showed 2 videos showing diverse ways of recognizing Holy Week. (We are in a series of lesson with the theme of diversity within Christianity.) The first video was the executive director of Jews for Jesus who was explaining the meaning and procedure for the Seder. The other talked about the Easter parade in Seville, Spain. We had a short, but good discussion. The class seemed to enjoy it.

After church, we went to lunch at Chalupes so that Kevin would be acquainted with our favorite Mexican restaurant. We were pleased that he liked the enchiladas even though they were not Tex-Mex. At 3:00 we went to the Bijou where we saw Steel Magnolias. We all enjoyed it.

There were two highlights of the weekend. The first was doing 4 video conversations with Kate. Kevin used his camera. The first two 25-minute conversations were with Kate and me. We talked a little about her family, our courtship, starting graduate school at TCU and our move to Madison. The next two were with Kevin and Kate. They talked a little more about her family but mostly focused on her work when he was a child, her retirement, and other things that included his own impression of things when he was a child. These conversations reminded me of those that are broadcast on NPR’s “Morning Edition” every Friday. They were quite natural. We were all at ease and simply talked about the subjects as we might have done if we had been sitting around in casual conversation. I am expecting these to be great oral history records and plan for us to do more in the future. I am going to investigate getting a video camera so that we can continue to do this on our own. It was also a very therapeutic thing for Kate. First of all, she got pleasure out of talking about the various aspects of her life. Second, I believe the act of talking itself was a good way of exercising her brain. She did very well. No one would have suspected she has Alzheimer’s.

The second highlight was our visit with Kevin’s piano teacher from the time he started playing (around 7 or 8) and his senior year in high school when she suggested he take from a professor of music at the UT. She has recently moved to a local retirement community with continuing care from cottages, apartments, to assisted living, skilled nursing, and dementia units. She wanted to hear Kevin play. She played some herself and got him to the piano. He has not played in a while, but we enjoyed hearing him as well.

It was a leisurely visit, but we did stay up a little later and didn’t make up for it by sleeping later than usual. Neither did Kate rest as much during the day. That changed today. She got up at 5:25 this morning to say goodbye to him. We left at 5:35. She went back to bed and didn’t get up until I got her up for lunch at 11:35. It is 3:01 pm right now. She went back to bed at 2:08.

She got along so well while Kevin was here that he didn’t notice much difference from when he last saw her in December. He had been a little concerned before getting here. He had spoken with Virginia Franklin and my brother. Both of them had told him how much she had declined since they had seen her last.

I told Kevin that Kate had had a good week before he arrived. His visit helped her sustain this pattern. Now that he is gone, I can see her taking a step back. It is as though she were on stage while Kevin was here. Now she doesn’t’ have to keep up pretenses. It’s really more than that though. We were busy while he was here. She didn’t have to rely on her iPad for entertainment. She didn’t get bored. That is different today. If only I could keep her entertained more steadily, she would be better. This is difficult with my other responsibilities. I hope I can get her to have some more video conversations. That might help.

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A Day That Ended Well

This morning I felt like we were headed for an unpleasant day. That was probably reflected in my first post of the day. The second was more upbeat. I am glad to report that it ended well. How do I account for it? Staying busy. We were out of the house a good bit of the day. We didn’t get to Panera until 11:15. We finished lunch close to 1:30. From there we drove to a senior living facility to visit one of my Sunday school class members. Her daughter. from Atlanta was visiting with her which made for a pleasant time. My class member has gone down since I last saw her. She is in the dementia unit and clearly showed that she is in the right place. She seemed to know us, but she was quite confused. Every time I asked a question, she gave a strange answer.

When we left, we went to Belk’s to get Kate some shoes. We also got her some new hose. She looked for a summer sweater, something that she could wear into a restaurant to protect her from the air conditioning, but did not find anything. From there we came home for a short break. I turned on some music. We both got something to drink, water for me, Dr. Pepper for her. We sat together in the family room and chatted for about 30 minutes. Then we went looking for a sweater but no luck. It was 5:15; so we decided to have an early dinner and went to Naples. We both enjoyed the meal and our time together. When we got home, she asked me to leave the garage door open, and she would stay outside a while. She remained there about an hour. I came inside, put on some music, and started copying a few CDs to my computer from which I will transfer them to my phone. Kate came in a short time ago. When she got out of the shower, she asked me if I were going to bring something in for dinner. I told her we had already eaten.Then she remembered.

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Off to a Rough Start Today

Kate and I got to Panera a little later than usual today (11:15 am). She had been quite bored and down this morning before coming. As I mentioned in my previous post, she has not been using her computer in the past few days, perhaps a week, and she hasn’t spent but very little time in the yard. That has left the iPad as her only source of activity.

I told her that we could come to Panera and then go to lunch and then visit a member of our Sunday school class, who is now living in a dementia unit at local facility. She accepted my suggestion without enthusiasm.

The funny, and pleasing, thing is that once we arrived at Panera, and she was seated at Panera, she smiled and told me that she felt better. We have now been here for an hour. She has been engaged with her jigsaw puzzles on the iPad. It is unusual, but she hasn’t suggested that I get her anything else to eat beyond the normal blueberry muffin that I ordered when we first arrived. This seems to suggest that she got a lift simply by getting out of the house.

I had planned to call a friend whose wife has Alzheimer’s about our getting together this afternoon. We have met before, but it has been a long time. Now I am hesitant to schedule anything until I feel comfortable that Kate is all right. These are the kinds of challenges one faces. I am in that in between time when Kate is not ready for a companion to stay with her, and I feel the need to be with her as much as possible.

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Boredom

After a couple of good days, Kate has fallen back into her slump. She has been spending almost all of her time on her iPad. I don’t think I have seen her on her computer for several days. When we have gone to Panera the past few times, she has not taken her computer, something that she has routinely done up until now. I may ask her about this. I suspect that she must have found that she is not able to work with it as well as she has done in the past. If she loses the ability to work on her photos, that is another low blow. I want to put together a photo album of our marriage and have asked her if she could help with that. She indicated that she would. I may suggest that we do a little of that this morning or afternoon. I am also going to call a couple in my Sunday school class and see if we can visit with them this afternoon. He is on dialysis and doesn’t get to visit us much. He has been with us only a couple of times in the past year.

’Kate’s mood affects me. When she is up, I am up. When she is down, I am down. I am going to have to work harder to occupy her in meaningful things. I have a list of things I am going to attempt. These include involvement with the Shepherd’s Center, a seniors educational program that meets at a Methodist not too far from us. I am also going to see if there are some volunteer activities that we might do together.

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Best Day in Weeks

It is 9:44 pm, and I am in bed writing these notes so that I can put them in my journal. Before going to sleep, I have to report that today has been the best day in quite some time, perhaps weeks. We had only one bad moment when I came home from the Y, and Kate thought I had come in to rush her to get ready to go someplace. Actually, I was just saying hello and was going to check to see if she wanted to go get her morning muffin at Panera. She was working on organizing her clothes. I decided to leave well enough alone and went to the kitchen to check email. A little later we did go to Panera. While we were sitting there she told me the story I had already entered in this journal this afternoon. She said she was feeling good and that she had decided I was right about her dreaming about the incident that was causing her to be so blue (not her words). She said she couldn’t even remember what it was that had upset her. The balance of the day and evening she has seemed like her old self. I commented on how good she seemed to feel. She agreed that she did feel good. Now I FEEL GOOD as well.

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Possible Sundowning and Other Things

I have heard other people talk about Alzheimer’s patients and sundowning. I have wondered if that is something that Kate is likely to experience. Up until now I had not noticed any signs of what I believe to be sundowning. There have been several times recently when I have wondered. These instances occurred when we had planned to go someplace for the evening. When I mentioned that it was time for us to get ready, she has reacted very negatively. The times I remember involved going to a concert. One was the symphony. The other, I think, was a local choral group. This past Saturday it happened again. We have missed the last two symphony concerts. I was quite interested in the one this past Saturday because of the soloist (a former child prodigy who is now 33) who was playing the Mendelssohn violin concerto. The orchestra was playing the Tchaikovsky 5th Symphony. I thought this would be a concert that Kate might enjoy; so I made reservations to a luncheon with the soloist this past Friday. We went, and she enjoyed being there to meet her. We talked about Saturday’s concert. She was interested. I mentioned it to her several times on Saturday. Then about an hour before we were to leave I told her it was getting time for us to get ready. This made her very unhappy. In fact, she had gotten out of the bed and then got back in and pulled the covers over her. I tried not to force her to go but said, “”But you had told me you wanted to go. You enjoyed meeting the soloist at lunch yesterday.” I went on to tell her that she didn’t have to go, that I didn’t want her to be upset, that I would go on. After a few minutes, she decided to go with me. She ended up enjoying the concert and got to speak with a number of people we know. It was after this that I began to draw an association with sundowning. In the future I will be more careful to pay attention to her behavior around the end of the day.

The second thing that happened was yesterday. I had come home from church right after Sunday school as I have been doing for several months now. When we got home after lunch, Kate worked on her iPad. Then she lay down to rest. When she got up, I could tell that she was down. I decided to see if she would like to eat dinner a little early. She said she would. She was silent in the car going to the restaurant, and she wanted me to be quiet. As we were about to get out of the car, she said she was “down.” Then she went on to say, “I just can’t believe they would say that.” (I should also mention that in the past 24-48 hours she has mentioned something that indicated she thought I was checking with some friends in Nashville about something. I presumed this involved this same issue.) I asked her if she were talking about the same couple she has mentioned before. She nodded. She seemed seriously disturbed. When we had ordered, I reminded her of something I had said a week to ten days ago. I said that I really didn’t want her to have to struggle so because I believed she had had a dream about the whole thing and that I was unaware of our friends ever saying anything about her mother, certainly not to me. She appeared to accept it but with a little doubt.

This morning while we were at Panera she seemed in a good mood. At one point she volunteered that she had decided I was right, that she had just dreamed the whole thing (again without saying what the “whole thing” was) and that now she couldn’t even remember what they said. She told me she could remember my telling her it was a dream but not what they said. What I am hoping is that she will not call up her memory again so that we have to go through the same process again. She told me she felt better about our friends.

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Kate’s Latest Appointment With Her Doctor

Yesterday Kate had her annual physical. In advance of that, I had written a lengthy letter asking a number of questions and updating the doctor about Kate ’s condition. It turned out that my letter had not gotten to the doctor even though I had mailed it a week ago. I was able to chat briefly with her just before she went in to see the doctor. In addition to letting her know the questions for which I wanted answers, we talked about my being included with Kate and the doctor during every visit. We accomplished this by the doctor’s bringing me in the examination room and telling Kate that she thought it might be good to have another person who could her what was said. Kate agreed. Now I expect this to be a regular part of all future visits.

Before joining Kate, the doctor and I talked about the possibility of Kate‘s seeing a neurologist. She said that would be fine. She told me that not many of their patients see a neurologist. She thought that was because they have a much larger practice of dementia patients. Most people with dementia go to a regular family practice physician or internist, and they are not as familiar with the treatment of dementia. That made sense to me. I did explain that I thought it might be a good idea just to check in with one and not set up routine appointments with one. She asked how Kate felt about it when we were together. Kate looked to me and I gave my nod of approval. We didn’t leave with a referral, but if I don’t hear from the doctor by early next week, I will be in touch to arrange it.

We talked about Kate‘s PremPro and that her insurance company no longer includes it in their formulary. Dr. Reasoner had talked with them, and they agreed to continue it. We also talked about trying to wean Kate off of it. Dr. Reasoner said that would take 4-6 months. We are going to start that right away by her taking 1 pill every other day rather than every day. I’ll start that tomorrow.

We talked about Kate‘s being bored. Dr. Reasoner asked if she felt depressed, Kate said no, something that did not surprise me. She agreed that she is bored. We talked about things she could do to relieve the boredom. Dr. Reasoner encouraged walking, suggesting that would also be good for weight control. She weighed in at 174. That is 8 pounds heavier than six months ago. The doctor mentioned the Shepherd’s Center. I told her we knew people there and would check it out. I had already mentioned to one of them that I was thinking of doing that.

On the way home, I asked Kate if she would be interested in exploring a support group. She expressed an interest, and I am going to pursue this with the social worker. Kate said she thought now would be a good time to do this. She had not been interested in the past.

We also discussed Kate‘s customary visits to her OB/GYN. We decided to have Dr. Reasoner take care of all the things that he has done in the past. She gave Kate a pelvic exam. She also scheduled a mammogram and a bone density scan for March 28.

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Another Strange Incident

I got home from Rotary about 30 minutes ago. Kate was seated in her chair in her office working a jigsaw puzzle on her iPad. I can’t remember all the dialog, but this is what happened. She was relieved to see me and asked if she could come out now. I was puzzled. She indicated that she thought I had told her to stay in the back of the house. I apologized and told her I never intended for her to remain in the back of the house. She was relieved but also a little peeved with me and told me she almost went to her bathroom to sit in the tub just to get out of the room.

I turned on the stereo in the family room. In a minute she came in with her iPad and her sweater and looked ready to go. It turned out that she thought we were going to lunch. I learned this while we were in the car. She had wanted to go to Chalupes. When she realized we were not going to lunch, she said Panera was OK.

A moment later she said something about “their” coming to see us and that she was going to say something about what they had said about her mother. I asked if she were talking about a couple in our church. She said she was. Once again she said something about what they had said about her mother. I told her I was unaware of anything they had said. She was annoyed. It appeared that she felt I knew but couldn’t remember. When I asked what they had said, she said, “”Let’s just not talk about it.” That is pretty much her standard response to almost anything I ask.

3:34 pm

We are back home now. I wanted to add that this is one of those afternoons when she is feeling quite bored. She just looks depressed. Unfortunately, I didn’t take the iPad’s charger, and her battery ran down; so we came home about 30 minutes ago. I offered to show her my slide show of our trip to Africa. I thought it might interest her. She agreed, but her body language indicated she didn’t have that much interest. Finally, she came into the family room where I was setting up the show. After she sat down, she indicated that she was sleepy. I asked if she would like to rest before seeing the show. She said yes and is now lying down in our bedroom.

Tonight is a reception in connection with an upcoming symphony concert. We usually attend but have missed the last 2 or 3. I had thought we might go tonight. When I mentioned it to her this morning, she indicated she didn’t want to go. It was actually a little stronger than that. She was really indicating that she was not going.

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Recovering from our Colds

Today seemed like a day of progress in recovery from our colds, at least for Kate . It is peculiar, but we both seem to have trouble early in the day but are better later in the afternoon and evening. It has been hard for me to determine how much of her listlessness is a result of her illness and how much might be a result of her Alzheimer’s. I suppose I will see in a few days. I think it has been a combination.

She is still asserting her independence but also showing her need for and acceptance of my help. Today, for example, I noticed that she had not taken her medicine. Instead of telling her that she had forgotten (which I usually do) I simply took the pills I knew she really needed and gave them to her. She never asked any questions, just took them. I might have thought she would ask where the others were, but she didn’t. She easily accepted my help. On the other hand, tonight when I gave her her medicine (she had forgotten to take it again), I told her to be careful because there were a lot of them. She said something to me that clearly indicated that she didn’t need me to tell her that. The reason I had done so was that earlier when I had given her the pills she had missed this morning, she dropped one of them in her bed and couldn’t find it.

I am sensing there is greater importance in my trying not to push her too much. After getting out of a movie at 2:30 today, I told her we needed to get to our haircuts. She expressed displeasure in that prospect. Normally she would be glad to get a haircut. It turned out she was tired and wanted to go home. We had been away from home since 10:00 this morning. As it turned out, I was wrong. When we got to the salon for our haircuts, we found out that they are really scheduled for next Tuesday. Thus she got to spend the balance of the afternoon (almost a full 3 hours) at home before we went to dinner. I have tried not to over schedule in the past, but this experience confirms just how important that is. She likes to have breaks at home and by herself (I think). I need to make sure she gets this time while also trying to minimize her boredom. It turned out that going to Panera, having lunch, and then seeing a movie was all she needed. It was time for a break, and she got it.

I continue to be surprised at some of her confusion. Yesterday, for example, she had gotten up from a little nap in her office. She came into the kitchen for something and was going back to our bedroom and asked, “”Do we have an iPad?” I think that she was momentarily forgetting that she has a new iPad to replace the one that was stolen last week.