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Today It Was Hard to Get Going

This morning Kate was still sleeping/resting in bed when I reminded her that this is the morning of our monthly Y breakfast. She seemed very groggy. I told her she did not need to go, but she got up. In a few minutes the called for me. When I got to her, she said, “I don’t have anything to wear.” I gave her 2 pair of black slacks which she immediately took to her room. In a minute or two she came into the kitchen and asked if we were going somewhere this morning. I told her we were going to the Y breakfast. She again said she didn’t have anything to wear. I told her I had given her 2 pair of slacks. She asked where they were. I told her I had given them to her. She got into our bed and said they were probably on the bed in her bedroom. I checked. That is where they were. I gave them to her. In a few minutes, she came back and asked where we were going. I told her again. She told me she thought she would stay home. I told her that would be fine. I reminded her that our housekeeper would be coming around 8:30 and that the Robinsons would be here around 11:15. She groaned and got into the bed again. She asked what she could wear. I told her she had the 2 pair of slacks I have given her and I also had a pair of cream colored slacks we had recently bought. She asked that I put them on a chair in our bedroom.

8:25 pm

When I got home from breakfast she was still in bed. About an hour before the Robinsons were scheduled to arrive, I told her it was time to get up. She asked what she could wear. I got the cream colored slacks and gave them along with a top she had worn for the first time yesterday although we had bought it a year or so ago. It was nice one and still had the tags. When she came out dressed she wasn’t wearing the top I had given her. She couldn’t remember that I had given it to her or where she had put it and asked me to find it. I did so. What disturbed me most about all of this was how upset Kate had gotten. She was just so confused and could see it herself or she wouldn’t have asked for my help with her clothes. What I sense is that when she looks at her clothes, she just sees a lot of “stuff.” Nothing specific jump out at her. It is overwhelming, and she doesn’t know what to do. It is so very sad. I am always hurt to see her like this, and it is getting worse. Clothes have been a central issue for us from way back, but now it is continually leading to greater frustration for her and for me.

As it turned out, the day went well. I haven’t had a chance to communicate with the Robinsons since they left, but I suspect they did not see much if any difference in Kate from the last time we were together. We had a good lunch and good conversation at the restaurant and at home. The day ended beautifully. We had dinner at our favorite Mexican restaurant. When we got home, I asked her if she would like to watch one episode of a BBC series I had recorded. She said she would rather relax, got her iPad, and sat in the family room working puzzles until a few minutes ago.

I can’t remember if I reported that I found her computer late Saturday. I had been considering buying her a new one but decided to make a more thorough search of the house before doing so. I found it in a corner of her room behind a table with the printer on it. I have a hard time believing she had put it there. I think Libby must have done that 2-3 weeks ago. I had thought Kate was simply losing interest in the computer (that may be correct) but now I am wondering if she just didn’t know where it was. I charged it and put it where she would see it. I wanted to see if she had remembered it was missing because she was very disturbed that she might have left it at Panera’s. I haven’t seen her using it since she has had it back. It may be that she is losing interest in it meaning that it is becoming more difficult for her to use.

From my standpoint the big issue we are facing is Kate and her clothes. She is turning to me to help when she can’t find anything to wear, but it is hard to prevent the problem. I knew this was coming, but it is a little sooner than I thought it would be.

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Getting a Leisurely Start

We’re off to a good start today. It is a beautiful spring day. I took my customary 3.21-mile walk after getting up at 6:15 and having breakfast. Since then I have been reviewing and responding to email. I purchased a new audio system about 4 weeks ago and have been listening to music much more than in the past. I have found that to be very therapeutic for me.

Kate got up around 8:30 and got some apple juice. I reminded her that we get haircuts at 10:30 this morning and that she would get color. Then she went back to her bedroom and turned on the TV. When I went back about 15 minutes ago, she was just getting up to get her iPad. She asked me to bring her some yogurt which I did. I had started to ask if she would want her morning muffin at Panera but chose not to do so when she seemed like she just wanted to relax right now. I changed out of my walking clothes and dressed for the day. I felt it was better for her to relax, and we could leisurely get to our haircuts. She doesn’t really need the muffin. She is up to 174 now, a far cry from 99 before we were married. It is hard for her to stop eating though. Last night I had suggested we go to Hathaway’s for dinner. I was thinking that we both needed something less fattening. I got a cup of black bean soup, and we split a grilled salmon with asparagus and a baked sweet potato. I had only gotten the soup because the rest is not usually that filling. When I started to ask our server for the check, Kate said, “Don’t you want some dessert?” I really didn’t but knew she did. We ended up getting the skillet chocolate chip cookie which I think is to die for but has to be loaded with calories. The upshot of that was that when we left, I was stuffed again. I find that I am having a difficult time getting my weight back to what I like it to be (160-162 vs. 164-167).

This is just of the type of adaptations that one has to make along this journey. I believe it is worth it, however. I don’t want to look back one of these days and wish that I had loosened up a bit on my routine.

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The Rest of the Story

I cut off my previous entry because Kate said, “I want to go home now.” I asked why, and she told me to get a bra. We closed down our iPads and went home. We didn’t have much time as we were supposed to meet our friends for lunch in 20 minutes. We looked all around her room/office and did not find either of the bras we had purchased 7-10 days ago; however, I found an old one on the floor near her bed. I gave it to her, and we left.

Now back to the theme of the previous entry at 10:58 this morning. The potential breakthrough came when I told Kate (while at Panera) I would like to help her with her clothes if she would let me.” She nodded that she would. I told her we could start this afternoon. If she can remember this, we may be able to take a giant step toward being better organized with her clothes. I recognize, however, that this is a big “if.”

We had a very good time with our friend. When we got home from lunch, it was almost 2:30. I came inside while Kate remained outside. She stayed out there until shortly after 3:30. While she was pruning, I went back to her room to organize her clothes that were strewn all around the room. I sorted them into slacks that fit her, those that don’t, and those about which I am unsure. I also put all her tops together and put them on the bed in the guest room. I also tried to sort socks but wasn’t very successful. Most of them were single socks and not pairs of socks. These remain on her bed at the moment. I don’t believe Kate has been in her room yet, at least she hasn’t said anything about its being cleaned up. I believe it is possible that she won’t notice at all. I’ll give her a chance to notice before I say anything.

My next task is to buy some new socks, bras, and nightgowns. Last night she slept in a pair of slacks and a top.

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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.