Posted on

Travel and Confusion

Kate and I returned home from Asheville this afternoon. Since our arrival around 2:15, she has been outside. That’s two hours. I believe this will be therapeutic for her. I was not surprised to discover that her confusion continued this morning. This is even easier to understand because she woke up in a somewhat dark room without knowing where she was. After we got beyond that, it was obvious that she was not in a cheerful mood. My morning cheerfulness and expressions of love and affection were not welcome. She wasn’t mean-spirited at all. She just wanted quiet.

When she was dressed, I took her to the lobby for breakfast. She didn’t show much interest in anything but picked up a pastry. I pointed in the direction of a table and said, “Let’s sit at that table over there.” She obviously missed that and didn’t follow me to the table. I looked around and saw that she had taken a seat at another table close to where we had been standing. I brought her over to the table where I had put her breakfast. She didn’t converse much which is not unusual at all, but she just didn’t look cheerful. After breakfast, we decided to return to Knoxville without having lunch in Asheville.

As we drove out of town, I tried to cheer her up. I said something about our having had a good time and how much we had enjoyed the hotel, the meals, and the play. She wasn’t very responsive. Once on the highway, I reached across the console and put my hand on her leg. She lifted my hand up and pushed it away.

About an hour into the trip, she was restless. I decided to take a lunch break. I didn’t want to take a long time; so I stopped at Wendy’s. I asked her if she would like a chicken sandwich or a hamburger. She said, “I don’t care. Just order for me.” We sat quietly through lunch and then continued home. Although she didn’t say much, she appeared to be in a better mood when we reached home. It is unusual for her to be in a depressed mood this long. I am eager to see how she feels when she comes in for dinner.

Posted on

A Good Day

I always love to report that we have good days even 6 ½ years after Kate’s diagnosis. Of course, I wish that I could report this more often, but that is not realistic given the nature of Alzheimer’s. It is clear that Kate’s mood plays a significant part in making these days happen. From the very start of the day right until this moment, she has simply been in a good mood. We both have enjoyed the day. I have to say it wasn’t that we did anything special. It was that she was happy with everything we did. This reminds me of that of expression that success if not getting what makes you happy but being happy with what you get.

She was up earlier than usual this morning. About 8:30, I went back to the bedroom to see if she were still in bed. I found that she was not only up but dressed and just about ready to go to Panera. We were there before 9:00. She was happy on the way to Panera and throughout the time we were there. One of the people we see there frequently was by himself today and sat at a table across from us. We (he and I) talked for about an hour while Kate worked on her iPad. She never showed any boredom or eagerness to leave. About 10:30, she did indicate that she would like to go home and we did. Just before 11:30, I told her it was time for lunch. She came in right away, and we left for Carla’s where we usually go on Tuesday. From there we drove to the Acura dealer for routine servicing of my car. We were there about an hour and 20 minutes. Again, she was not restless. She simply worked on her iPad while I edited a slide show of photos taken during a 1976 trip to Colombia. We came right home, and she went back outside to work in the yard until I called her in to get ready for dinner.

She ate every bite of her dinner and commented on how good it was. We came home, and she changed into her night clothes and got ready for bed. She was still in a good mood.

Posted on

Another First (or Second) with Anger

Kate and I went to dinner and a movie tonight. The latter is a rarity for us now. I have not been scheduling anything at night beyond dinner for several months now. This time, however, The Flick, our favorite theater, had a Thai film that started at 7:00. It sounded intriguing, and I thought it was worth a try. During dinner, I was thinking about how well the visit with the sitter had gone. I also felt I should add another journal entry specifically about how good-natured Kate has been today. Right now I want to make it clear that she seemed remarkably agreeable and at ease. It was not only how she received the sitter but also how she responded to my help on getting her clothes to wear out this evening.

What I didn’t anticipate was how radically her mood would change as we left the movie. On the way to the car she mentioned how miserable she had been in the movie. I thought that was because she didn’t like the movie. It turned out that it was the result of not having paper napkins or some other paper product to Wipe the saliva from her mouth. I discovered this when I inquired as to why she had been so miserable. She let me know it was because she didn’t have any napkins. Then I made the fatal error of telling her that I wish she had told me because I had taken several napkins into the theater with me just in case she needed them. To my surprise that angered her because I had not offered them to her. I told her that I didn’t recognize that she had been miserable. She said I must not care for her very much if I didn’t notice her misery. I gave her a couple of napkins. “Too little, too late.”

In the car on the way home, she said in a very angry tone of voice, “And I have never exaggerated.” I told her I hadn’t said that. She said, “You certainly did just a little while ago.” I let it go because I could tell this was one of those instances in which she had had some kind of misperceptions (delusion) that I had done so, and it would do no good to argue. Later at home she expressed the strongest anger I have ever heard from her. Unprompted, she said, “I have never exaggerated about anything.” I told I knew that she never exaggerated. She didn’t say anything for a while. My impression was that she had gotten emotional over her salivation. She was burping and making other noises. In a few minutes, she came out of the bathroom with some toilet tissue that she was holding to her mouth. I told her I wished there were something I could do to help her. She looked at me and spoke in a gentle kind voice, “Oh, I’m fine.” She seems to be back to normal right now.

Posted on

Little Changes

Among the changes in Kate’s recent behavior, I have noticed changes in her mood. I had previously mentioned that she had had several days during which she was in an especially good mood and very cooperative. She seemed to accept just about any of my suggestions. Then she had a day when she was quite irritable. That didn’t last long, and we returned to our usual habits of a mixture of more neutral behavior with a few irritable moments when I make suggestions about things to wear or offer my hand when she is going up or down stairs or a curb. We had a good day in Asheville on Sunday. Then yesterday morning she was irritable without any precipitating action on my part. We had a lunch scheduled with several people from our bank. She was far from excited about that. She seemed to enjoy herself and chimed in several times to make fun of my talkativeness. This is something I didn’t mind at all. It was fun to see, and I think our friends at the bank felt the same way. It was, however, something she would not have done before her Alzheimer’s. It was one of those times that her brother refers to as speaking with his “filter turned off.” I’ve learned that he means that he is insensitive to the possible impropriety of his comments.

This morning as she was getting out of bed she asked me if she should make up the bed. I don’t ever recall her asking this before. The only thing I can relate it to is that she knows our housekeeper comes once a week and washes the sheets. On those days, she did not make up the bed. Over the past 2-3 years, she hasn’t regularly made up the bed on any day. This is worthy of comment although I don’t believe I have mentioned it before. Her mother had taught her to always make up the bed. She has done so throughout our marriage until Alzheimer’s. Another connection to asking me this question is that asking my advice, permission, or confirmation is becoming another of those little changes that are taking place. This one just surprised me.

When we returned from Panera this morning, she asked me if she should wear a cap when she went outside to pull leaves. This was the first time she has asked this. It is an overcast day. Perhaps, she was really asking herself if she needed a cap.

When we got home from lunch, she asked me if she could use the clippers while she was working outside. As always, I told her she could.

Posted on

Something New and Disturbing

A few minutes ago I left Kate in the bedroom working on her iPad while I went to the kitchen to check on something. As I left, I said, “I’m going to get ready for a shower in a few minutes.” When I came back, she had put the iPad on the ottoman of her chair and was watching the news on TV. She also had an angry look on her face. She said, “You told me to put that thing (the iPad) down and watch the news for a change.” I told her I hadn’t said that. She said, “Yes, you did. Don’t deny it.” I leaned down by chair and put my arm around her shoulder. I decided arguing wouldn’t get us anywhere. I told her I loved her and that she didn’t need to watch the news. She sat quietly fuming for a minute. Then she said, “I just get so tired of being so dependent on you. I can’t go anywhere or do anything without you. Here I am in my 70s and I’m treated like a child.” I repeated that I love her and told her I knew it was hard.” Then I asked if she would like to watch Golden Girls. She said, “I don’t care.” I turned off the news and now Golden Girls is playing. She is working on her iPad again.

Although she has talked any number of times about her not liking to be dependent on me, this is the first time she ever blamed me or took it out on me. I realize that she is likely to have forgotten this tomorrow, but I can’t help wondering if this signals a change in her outlook toward me. It comes just after a period of several days during which she has been unusually cheerful and cooperative. What a dramatic change she has made tonight.

The drama is now over. She just got up from her chair and said, “Well, Babe.” She didn’t sound angry at all. I asked if she were going to get something to wear to bed. She smiled and said she was. I told her I loved her, and she walked to her room. I hope she returns in the same state of mind in which she left.

Wow! This came at me from left field. To underscore how dramatic this was for me, this was the first time I have ever heard her express anger with me from the beginning of our marriage to now. She has expressed irritation frequently over the past few years, but this reaction was well beyond anything I have seen before. I am very glad that it has blown over and, hopefully, won’t return again.

When she returned from her room, she was just as pleasant as she has been for the past few days. It is as though the angry outburst never happened.

Posted on

Being Cooperative

In my recent entries I have paid particular attention to ways in which Kate has declined. One thing that I haven’t mentioned directly is that she has been unusually cooperative with me over the past few days. It isn’t that she is normally uncooperative, but she has held on to her independence and has expressed resistance to many things that I have done to help her. That involves things like offering her my hand when she is walking up or down steps, selecting clothes for her, or telling her about stains on here clothes. It also involves things like letting her know when it is time to go some place or how much time we have until we leave or whether we have a lot of time or whether we need to hurry.

Recently, she has not expressed the same degree of resistance or irritation. I don’t mean that it has disappeared, but that it is very noticeable that she has been much more agreeable in the past few days. I can’t help wondering if this might not be another indicator of her decline, that she is acknowledging her dependence on me and letting me take charge. I will also say that I have been increasingly respectful of her desire for independence and wonder if my own actions have been less threatening to her sense of independence.

Posted on

More Frustration, Boredom, and Discouragement

Kate was up early again this morning and ready for Panera. She is not in a good mood. She is depressed. As usual, she won’t talk about it at all. She just shrugs her shoulders when I ask what is wrong, how I can help, etc. We spent an hour and a half at Panera before she wanted to come home. She is in bed resting. I am going to get her up in a few minutes to take her to lunch.

I have also bought tickets to a movie at 3:00 this afternoon. This is a movie she told me Friday she didn’t want to see. I am going to try it anyway as a diversion, a way to get her someplace other than home or Panera or one of our restaurants.

Coupled with her boredom this week has been more irritability than usual. In fact, I have observed what I take to be less humor in responding to me and a more genuine expression of irritation with me.

I can’t recall a week during which she has been this way before. I must admit to being discouraged this moment. I am hoping she bounces back soon but also worried that I am seeing signs of a further transition.

Posted on

Frustration and Boredom

My follow up to yesterday is only to say that it things didn’t get better for the second day in a row. As always, I try to figure out why when things are not going well. Sometimes I have a clearer idea than others. Often I’m just not sure. Yesterday, for example, she seemed to start out with a less cheerful demeanor. That was even before any particular event occurred that might have brought her down.

That was different once we got to Panera where she was working on her jigsaw puzzles. Repeatedly she kept hitting something that took her out of her puzzle. That particular screen has a “Back” arrow in the top left-hand corner, but she doesn’t see it. I just hit it, and she is back to the puzzle. Other times, it is a little more difficult, and I just hit the “Home” button on the iPad. That takes me to the screen with all the app icons. I select the one she had been working on (if I can remember it), select it, and give it back to her. As noted in the past, she never asks for my help. She just closes the iPad, puts it on the table, and looks frustrated.

To make matters worse, we had a rainy day. That meant that she couldn’t work in the yard. Since her two main activities were not available, she spent more time in bed. I tried to interest her in a movie, but she didn’t want to go at least to the one that I thought might be the best possibility for her.

We went to our regular place for pizza. When we returned, I put on a Katherine Hepburn movie. She seemed eager to watch. A few minutes into it, she said she was sleepy and got into bed fully clothed. She didn’t get up until this morning. She seems normal this morning. That means she isn’t in a bad mood although we got off to a rough start when she had dressed in some clothes that I didn’t think she would have wanted to wear since we are driving to Nashville to have lunch with our friends Tom and Angie Robinson. This was one of those times I put clothes on the bed for her. I took her to the room and left her to put them on.

When she came out she was wearing the same thing she had been wearing. That happened two times before we got it right. You might think the easy answer is for me to stay with her while she dresses; however, she doesn’t like for me to do that. She feels she doesn’t need my help.

We are now at Panera before driving to Nashville. On the way here, I decided to tell her that today is my birthday. (Jesse had sent me a text and plans to call while we are on the way to Nashville. I didn’t want Kate to learn about my birthday that way because I feared that she might feel bad for not remembering.) I said, “Today is my birthday. I am 77. Did you ever think you would be married to someone that old?” She said, “I was just thinking that.” That is all she said. No surprise. No emotion. It doesn’t make me sad for me, but for her.

Posted on

Not a good day

We have just returned from dinner at Chalupas, our favorite Mexican restaurant. We go there about once a week, usually on Monday night. Sometimes I think of it as a good place for Kate when she is down. Tonight was one of those occasions. I wish I could say that the experience uplifted her spirits. It’s not just the food. In fact, it’s not even primarily the food. We like the owner and his family, all of whom work there at least from time to time. School is out, and all three children were working tonight.

I wish I could explain why Kate has been down today. I do know that she seemed all right this morning when we were at Panera. The first sign came just before noon when I told her that it was time for me to leave for Rotary. She didn’t say a word, but she looked dejected. This follows a few recent signs that she is bothered when I need to go somewhere. She feels trapped at home.

The need to get out comes up periodically in the afternoon. She comes into the kitchen which I use as an office and asks, “What can I do now?” As I noted in a post yesterday or day before, I generally give her options. The one with which she connects is always going to Panera. That occurred without words this afternoon when I returned from Rotary. She met me in the kitchen and simply said, “I’ll meet you outside.” That is her instruction that she is ready to go to Panera. I told her I would be right with her. I packed up my computer, our iPads, our cups, and met her outside. We were at Panera about an hour when she was ready to leave. During the time we were there, she was experiencing frustration with her iPad. The problem continues to be that she hits a wrong button while she is working a puzzle. That takes her to a screen that she doesn’t want. She doesn’t know what to do. She never asks for my help. She just groans and/or closes her iPad and puts it on the table. Often she lets me (somewhat reluctantly it appears) to get her puzzle back. She then works a while longer until it occurs again. After several tries, she is ready to leave. That is exactly what happened this afternoon.

On the way home I told her that I would drop her off and then go to the AT&T store to see about a new cover for her iPad. She has an old one that won’t prop up so that she can more easily work puzzles. When I told her this, she told me she thought we were going to eat. At that time it was only 3:50. She looked dejected and made audible groans which is common. I tried to talk with her and look for a way to help. She didn’t want to talk at all. This is actually an extension of an old habit she had prior to Alzheimer’s.

When I got back home, she seemed even more discouraged. I asked if she would like me to play a recorded show of Golden Girls. She wasn’t excited about that but agreed. At 5:30, we went to eat.

Right now we are in our bedroom where I have the PBS Newshour on. Kate is in bed working on her iPad. She seems content at this moment. No groans. No dejected looks. I hope this continues. Ordinarily, we do this routine, and she seems to enjoy it. I hope that is the case tonight.

Posted on

Taking stock of where we are

As I mentioned before, my moods change with Kate’s moods and behavior. At the moment, I am in a somewhat sad mood. This relates directly to what I perceive as a shift that Kate is making to the kind of behavior that we commonly associate with someone who has Alzheimer’s. She seems more distant than usual. This is difficult to tell because she has exhibited signs of distance from things going on around her for a long time. It just seems like they are even “deeper” or more distant than in the past. I find this understandable since she has so little short-term memory, her long-term memory is also poor, and she is unable to comprehend so much of what goes on around her (TV, movies, plays, conversation).

My feelings right now are at least partially associated with a couple of things that happened during the week. The first involved my brother Larry. He came to Knoxville last Sunday afternoon. We had dinner together. The next morning we met him at Panera. The three of us talked for a while. Then we came back to the house where Kate remained outside to pull leaves while Larry and I talked. I left to attend Rotary. Larry was preparing to leave for his farm but went outside to chat with Kate before leaving. When I got home after Rotary, I asked her when Larry left. She didn’t know. I probed a bit, but she was unable to tell me anything. She did not appear to remember that he had been here.

The next day we visited our friends the Davises in Nashville before visiting with Ellen. I had told Kate several times over the previous two or three days that we would be going to see the Davises. I reminded her the morning we left. We talked about it in the car as we left. When we arrived at their house, she didn’t know where we were and asked, “What now?” I told her we would go inside and visit with the Davises. She said, “Tell me their names again.” I did. We went inside and talked for about an hour. Then we went to lunch for another hour. When we got in the car to leave, she told me how much she enjoyed the visit. Then she asked me to tell her their names again. A little later she asked, “What is your brother’s name again?”

Today we went to a Live in HD at The Met production of Der Rosenkavalier. This was Rene Fleming’s last Met performance. It was outstanding, but Kate wanted to leave at the end of the first act which we did. I had noticed she seemed bored. She yawned audibly two or three times during the first act. Although she was not very loud, the people in front and in back of us could certainly hear her.

We have now seen quite a few operas. It was the Live in HD productions that really generated her interest in opera. Today it made no difference. I knew that she was tired going in, but I suspect it was more than being tired. It was a complex comic opera. I know she must have been confused and tuned out. I fear this is just the beginning of things to come.