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Changes in Sleep Pattern

I was expecting (hoping?) Kate to be awake a little earlier today. I had a special interest. A man with whom I have had a friendship going back more than twenty years died this week. His service was at 11:00 this morning. At 9:00, Kate had gotten up to go to the bathroom. I thought that was a good sign. That would give her ample time to be ready to leave by 10:30. I told her about the funeral, and she asked if she could sleep a little longer. I told her she could. She got back in bed and was quickly sound asleep. Shortly after 9:30, I had dressed for the funeral. I knew time was getting short for her to get ready and asked if she thought she could get up. She really wanted to sleep, so I changed clothes and let her sleep.

About 11:30, I went back to the bedroom with the intention of waking her. I found that she had gotten up. We were definitely too late for the funeral, but we got to lunch at Bluefish close to our normal schedule. We ordered our usual meals, the salmon for Kate and a salad with a cup of shrimp and andouille sausage stew for me. Our regular server was out. She had cut her hand shortly before we arrived, but we were served by someone else who was as friendly as our regular one. We chatted with her about her educational and career plans. She hopes to start college in the fall.

We came directly back to the house after lunch. Kate brushed her teeth and went to the guest room where she is taking a nap. She is lying down on a love seat. That is a bit unusual for her. She has napped many times in the guest room but it has always in the bed which for me would be much more comfortable. This continues the change in her sleeping that I have been following the past several days. I intend to let her sleep as long as she feels the need. Since her diagnosis, it has not been unusual for her to take an afternoon nap, often right after lunch. Generally, she is up within 30-45 minutes. I am eager to see if she sleeps any longer today. I am hoping not.

I should say that I have not given her Trazadone since Monday night, so I can’t blame her sleeping on that. She hasn’t gotten to bed any later than usual. Everything seems to suggest that she may be entering a new stage. That would fit with some of the other changes that I have observed over the past week or two.

P.S. 3:04

Af few minutes ago, Kate walked in. She must have rested about 45 minutes. That’s not bad. I asked if she would like to join me for a while. She said, “For a while.” I take that to mean that she’ll want to go out sometime in the next hour. That would work out pretty well. We could go to Barnes & Noble and then to dinner. In the meantime, she is content with her iPad. I don’t know what we would do without it.

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Miscellaneous Happenings

I don’t make any effort to write about everything that happens in a day. I tend to post items that in one way or another seem noteworthy to me. I should add that there are simply too many things to comment on in a given day. I can’t remember them all. I tend to pick up on things that are either typical or unusual. The things I noticed yesterday fall in between these two extremes.

We began the day with conflicting signs of Kate’s expressing independence or dependence. That started with getting dressed. Normally, I am in the kitchen (my “office”) when she gets up, takes her shower, and dresses. This morning I went back o the bedroom to check on her, she had just gotten out of the shower and was beginning to get dressed. Before walking into the bathroom to brush my teeth, I noticed that she was about to put on her pants. She was looking carefully to see which was the front and which was the back. On quite a few occasions, I have noticed that her pants were on backwards. A few times I have told her and given her the choice as to whether or not she takes them off and puts them back on the right way. This was my first time to watch her work so hard to get it right. It took a while. She ended up taking them off and putting them back on. She must have put them on the backwards. This is a situation in which she could have asked for my help. She didn’t, and I thought I should give her a chance to do it herself. I believe I made the right decision. She had to work, but she got. That is always best.

I put her morning meds on the island in the kitchen. A little later she walked in dressed and ready for Panera. I told her the meds were on the island. She said, “I can see that.” This is an instance in which she felt she didn’t need or want my help. From past experience, I know that she often doesn’t see them.

I noticed that she was carrying a pair of socks that are not the ones normally kept in her sock drawer. As we got ready to leave, she asked with hand signals if she should take them with her. I told her that would be fine. I didn’t even try to imagine why she wanted to take them. She was already wearing socks. Once we were in the car, she stuffed them into a side pocket of her door.

Before getting out of the car at Panera, she said, “I’ll get a table, and I’ll let you take care of everything else.” Of course, this is what I do every morning except that I also get the table and put her iPad at her place. She occasionally does something similar at restaurants. She says, “Order for me.” Once again, I always order for her. I was surprised the other night when the server told us the entrée special, and Kate immediately said, “That’s what I want.” It was a good choice too. I wish I had gotten it myself.

Only one thing at lunch was particularly worth noting. As we were eating, she had made a comment about being glad she had married me. Then she asked, “What is your name?” I told her. Then she asked, “What is your last name.” That was followed by asking me her father’s name. She didn’t say anything following these questions and their answers. This has happened a number of times. At first, I thought she was joking. Now I think the link between my name and me is beginning to weaken. Clearly, she still knows me and that we are married, but the label is not as strong as it used to be.

As we got in the car after lunch, she got her socks out of the pocket in the door as well as some used paper towels and said, “Are we turning the car in?” I told her no that this was our car. A few minutes later, she unfolded the socks she had carefully folded earlier and said, “I want to take these with us?” I can’t be sure, but I think she meant “when we move to Texas.” She still brings that up periodically even though we have no plans to move. Then she told me they were winter socks and would need them.

Just before we arrived at home, she told me that she was going to take a nap if that was all right with me. I told her that would be fine. Then she told me not to let her rest too long because she wanted to be able to go to sleep tonight. A few minutes later we drove into our driveway. She asked me to stop and let her out. She wanted to work in the yard. She said she wouldn’t stay long. That means no nap today. That is no problem. I don’t think she needed it anyway. Besides that, she doesn’t usually go to sleep.

She worked outside for about an hour. Periodically, I looked out to see what she was doing. I noticed that she was pulling leaves off our Japanese Red Maple from which she had not pulled off all the leaves before winter. It was coming back nicely. Like last week when she worked in the yard for the first time in months, I had very mixed feelings. I was glad to see her enjoying herself outside. Over the years, this has been her most enjoyable activity. On the other hand, I love the tree and hate to see it denuded in the same way as the rest of our shrubbery. The good part is that it is tall enough that she can’t reach most of the leaves.

After coming in the house for a few minutes, she was ready to leave again. I packed up my computer and her iPad and got cups for each of us, and we were off to Barnes & Noble. When we drove out of the driveway, I looked at the Red Maple. She had removed all the leaves on the lower branches.

On the way to Barnes & Noble, I turned on a Ronnie Milsap album. Sometime in the 80s, we attended a concert of his. Kate had enjoyed him, and I bought the CD. I reminded her of this. Moments later, she asked me his name. I told her, and she said, “I’m sorry; I know I keep asking you this?” I told her she could ask me as many times as she wants, that I am glad to be able to answer her. She thanked me.

Tonight, after returning home from dinner, she sat in her chair in our bedroom working on her iPad. I had turned on a recording of CBS Sunday Morning. During one of the segments, she stopped and watched the TV. When it was over, she asked if she could use her iPad. As always, I said yes. Later, she asked if she should get ready for bed. I told her that would be fine. Once again, we had had a good day.

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Many triggers still work.

In my previous post, I noted how difficult (impossible?) it is for Kate to remember the name for Grant Wood’s American Gothic. That doesn’t mean that there aren’t other triggers that lead her to remember things I might think are long forgotten. I’m thinking of two specific things that occurred in the past few days. Both of them involves passages from the Bible.

The first came about when I had done something to which she said, “Well done.” That triggered her to recall the passage that says, “Well done, thou good and faithful servant.” She didn’t remember the exact words, but she was close. The second occurred yesterday when I told her I was thinking about going to a restaurant we had not been to in a while. First, she said, “I’ll go wherever you go.” That caused her to remember the Old Testament passage in which Ruth tells Naomi, “. . . where you go, I will go, and where you lodge, I will lodge. Your people will be my people, and your God, my God.” Once again, she didn’t get the exact words, but she had a pretty good idea.

There are other times when her own thoughts act as triggers. Yesterday, for example, we were driving to lunch when she said, “June Allyson.” I have no idea what she might have been thinking that brought her name up, and she couldn’t tell me. This is not something that occurs a lot but often enough that it doesn’t surprise me. It just shows that like the rest of us, her brain is still working. Thoughts are going through her head all the time.

On related note, a couple of times lately, she has pointed to someone and said, “He looks like your brother.” I have looked and could see a resemblance. What makes this interesting is that she often can’t remember his name. This reinforces the opinion I have expressed before that remembering the name associated with a person is only one, and minor, part of “knowing” someone.

Two nights ago at dinner, she engaged actively in conversation with our pastor and his wife. After we said our goodbyes, she asked me their names. I gave her the wife’s first name, and she asked for the last name. I told her. Then she asked the pastor’s name. After I told her his first name, she asked his last name. The whole process of labeling seems to have come “unglued,” but she is still able to interact with amazing success. That’s another thing for which I am grateful.

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Another Good Day

This is a short follow up to my previous post about our good day yesterday. I closed that by saying, “We’ll see what tomorrow brings.” Now I know. It’s been another good day. Once again it was a day without any special events. We just went about our daily routine. Kate has also been unusually good humored all day.

I won’t detail exactly what we did as in the previous post. I would just like to make two observations. First, and more important, it has now been two days that Kate has not complained about the arthritis in her knee. Except for how slowly she walks and gets in and out of the car, I wouldn’t know that she has a knee problem at all. I don’t believe this was because of any lessening of pain. I believe it relates to her mood. She has simply been more positive in her outlook today. The only sign of annoyance she displayed all day was at Panera this morning when a young child screamed a couple of times. As I have said before, she is very sensitive to sudden and/or loud noises. As much as she loves seeing young children, she is often bothered by the noises they make.

The other observation is not directly related to her mood. It relates to her use of hand signals to communicate with me. I have mentioned that she uses hand signals to ask things like, “Should I get put on my night clothes?” Or “Should I take my iPad?” Or “Should I take my cup into the restaurant with me?” I don’t believe, however, that I have said anything about her responses to me when I say things like, “I love you.” “If I had the chance, I would marry you again.” Or any other loving or complimentary words. Instead of verbalizing her response, she points her index finger at herself and then at me to say she feels the same about me. This is not something I had known to be a characteristic of someone with dementia, but it may be. I do know That someone I follow on Twitter recently mentioned that his wife used a hand signal to indicate she was ready for their nightly orange for dessert; however, his wife has some impairment of speech. Kate does not.

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Live Performances and Social Occasions

As noted in my previous post, we were at Casa Bella for Opera Thursday the other night. Once again, we had a great evening. The program and the singers were especially especially talented. For me, the most important thing is that Kate thoroughly enjoyed it. I haven’t seen any signs that her love for live performances has lessened in the least. On the contrary, it seems to be one of the highlights of her life.

It was a good social occasion as well. By now, our connections with others who are in attendance as well as the servers and, especially, the couple with whom we share a table each time make for a good evening. Kate is not talkative at occasions like this. I think it can be challenging for her because of the number of people who are talking. Sometimes it calls for a little patience as well as assertiveness. The other night, for the first time, she became frustrated and displayed it.

Like most of those in attendance, Kate and I arrive about an hour before the musical program begins. That gives us time to have our meal and enjoy greeting others as they arrive. One of the other guests came to our table to speak to the couple we sit with. We got into a conversation about someone else who has just had heart surgery. When he walked away, the man and woman with whom we sit continued to talk about the man who had had surgery. Kate couldn’t understand what we were talking about but must have recognized it was serious. She tried to get us to explain, but the man and the woman at our table were both talking simultaneously. It really was hard to focus on just one. Kate shouted, “What’s going on. I don’t know what you’re talking about.” With all the conversation going on at other tables, no one else is likely to have heard her, just the couple we sit with. They couldn’t have missed it.

This is only third time that I can recall her doing anything like this. The two other occasions were with good friends and occurred about two or three years ago. In each case, our friends thought her response was more shocking than I did. They were both correct that her behavior was out of character for her. I would say her response at Casa Bella was stronger than the other two times. In this case, I think it arose because of the level of frustration she experienced when she couldn’t understand what we were talking about. I’m sure she could tell it was something serious and may have felt shut out of the conversation. The good thing is that after her remark, she was just fine, and we continued to enjoy the evening as though nothing had happened. Like so many other things, it does make me wonder if I am going to see more of this kind of reaction in the future.

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Changes in Taste

For some time I have noticed that Kate sometimes likes a particular food item one time and dislikes it at another. At first, I thought she might be picking up on variations in the way the food was prepared. Then I began to realize there is just an unpredictable variation in her perception of taste. Last night, for example, she had a cheese quesadilla and a cheese burrito at Chalupas. After she took her first bite of the quesadilla, I asked her how she liked it. She said it was delicious. In a moment, she took another bite. Then I noticed that she only took bites of the burrito. When I asked about the quesadilla, she said it had a funny taste.

Even more surprising is what appears to be her changing taste for Dr. Pepper. It has been her favorite drink since before we met 56 years ago. She has always been sensitive to the mixture of the Dr. Pepper syrup and carbonated water that she gets from dispensers. Now she is finding that her drinks don’t taste the way they should even though I can’t perceive any difference from the way they should taste. Three times in a row this week (at three different places) she has complained to me that the Dr. Pepper didn’t taste right. Just a few minutes ago, I gave her a glass of water. She told me it had a “funny” taste and isn’t drinking it.

Fortunately, her judgments about food don’t extend to everything she gets. She is still eating well. We just returned from lunch. She enjoyed her sandwich, soup, and, especially, the salted caramel gelato.

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An Intense Emotional Experience for Kate

Over the past few years I have grown accustomed to Kate’s saying something to me as though she is responding to something I have just said. It puzzled me when it happened the first time. Out of the blue she said, “I can’t believe they would say that about my mother.” I responded with, “Who are you talking about?” She told me and then said, “You’re the one who told me what they said.” She has repeated variations of this as many as five or six times although I haven’t heard her say anything in quite a while. The issue has always involved someone’s saying something about her mother.

Today at Panera, I had just put a sandwich on the table in front of her. When I sat down, I noticed that she had a strange look on her face. She seemed puzzled. She could tell I was puzzled and said, “I think of both of them as mothers.” Although I quickly understood that she thought I had told her something, I couldn’t imagine what. I asked what she meant. She said, “I’m shocked.” I explained that I was confused. She said she was as well.

Then she said, “Stop. Just tell me slowly what happened.” I explained from my point of view and asked who she was talking about when she mentioned thinking of “both of them as mothers.” She told me she was talking about her mother and the youth director at her church when she was a teenager. The big surprise was that she thought I had told her that the youth director was her real mother. I explained that I hadn’t said that. As I did, I was prepared for her to dispute me because that is what she has done in the other situations. I was quite relieved when she believed me. She continued to talk about the emotion she felt before I straightened things out.

As we walked to the car to go back to the house, she brought it up again. When she got in the car, she said, “Well, we’ll look back on this and laugh, but it wasn’t funny at the time.” She brought it up again when we got home. This must have been a full thirty minutes after this episode occurred. The fact that she remembered for that long is a sign of the intensity of this experience.

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A Small Thing, But Another Marker on our Journey

Several years ago, I bought a white board for Kate. I put it on the island in our kitchen where she would see it each day. Each morning, I wrote the day of the week, the date, and a list of things on our schedule for that day. Over the past year, I gave up writing the schedule because Kate was not reading it; however, I have been dutifully writing the day of the week and the date each morning when I went to the kitchen for my breakfast. For at least six months, It looked like Kate did not pay attention to it, but I kept it up. Today I finally broke down and put the white board away. At this point, she seems to have little interest in this information. In case I am wrong, I bought a large digital clock that gives the time, day, and date. At least I won’t have to erase the old and write the new information each day. It will also be easier to read.

I’ve noticed a couple of other new things. One is that she is beginning to dislike whatever drink she gets, even her Dr. Pepper. For a several months, she has been mixing a little of each of the non-soft drink items (at least two types of lemonade, sweet and unsweetened tea, and two flavored teas) and being unhappy with them. She has started asking me to refill her cup. I have been getting her either an Arnold Palmer or a half and half mixture of sweet and unsweetened tea. She hasn’t like those either. In two different restaurants today, she didn’t drink her Dr. Pepper because it didn’t taste right to her. I tasted it. It tasted the way it usually does.

Tonight she worked a few minutes to figure out how to put on her robe. She finally gave up and asked me to do it for her. This is one of those occasions when she was happy to have me do something for her.

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More Forgetting and Confusion

Our son, Kevin, arrives from Texas today. Since he learned about Kate’s diagnosis, he has visited us two or three times a year. Each time, he comes without his family and stays several days. That has enabled him to devote more time to be with Kate and see for himself how she’s doing. During each of his previous visits, he has felt good about how well she is getting along. He calls frequently, and I have been very open with him and our daughter. He is aware of how much her memory has declined. It is quite possible, however, that he may not observe any radical difference since we were with him and his family in January.

The reality is that she has experienced notable changes since his last visit in Knoxville this past September. I notice differences more than ever. One of those is her frequent asking me for the names of people and places. She seems to be developing a comfort level in expressing her difficulty remembering things. I suspect that she has had this problem for longer than I am aware because previously she didn’t ask for help recalling names. She is obviously working hard to remember them.

She has become very open about not knowing where she is at any given time. Frequently, wants to know what city we are in. Other times, it is the name of one of the restaurants we frequent so often. Several times over the past few days, I have mentioned that “our son will be with us on Saturday.” Each time she has paused a moment and then asked, “What is his name?” Yesterday she asked about his family. She couldn’t remember the names of any of them. I went through the names of each one, but recognized that she won’t remember them.

As I said in a post a few weeks ago, connecting the name with a person is one of the most superficial levels of knowing a person. I am confident that when she sees Kevin today, she will know exactly who he is. I also know that for someone with Alzheimer’s forgetting names is a first step in the process of not remembering the person. That makes me sad. It also makes me wonder when I will discover that she no longer remembers me.

Memory problems are not the only signs of change that I am observing. She also shows more confusion. She has greater difficulty putting her clothes on properly. Very often she puts her clothes on inside out or backwards. When we arrived at Panera yesterday, I noticed that she was wearing shoes that didn’t match. I didn’t say anything to her about it. I didn’t think it was that important. Before we went to dinner, I did mention it. She looked down at her feet. At first, she didn’t notice that she was wearing two different shoes. Then she said, “You’re right.” She went to change shoes. When she returned, she hadn’t changed shoes at all.

As we left the restaurant, I said something about being near our first house in Knoxville and also the house where Ellen had lived before her stroke two and a half years ago. I told her I would drive by both houses. I also said something about how long we had lived here. She then asked me if we were in Fort Worth.  I reminded her that we live in Knoxville.

Months ago I reported that she almost always asked me if she could work in the yard when we came home. That has gone away since she hasn’t been working in the yard. She is doing something similar. She seems to be unsure about doing things that one would not expect to be unsure of. For example, when we came home from lunch yesterday, she pointed to the bathroom off the laundry room. She was asking if she could use the bathroom. When we arrived at the restaurant tonight, she asked if she should take her cup with her. I told her they would have glasses for us. Just before leaving a restaurant the other night, she asked if she should take her glass with her or leave it on the table. Last night at dinner she asked (again with hand signals) if she could drink her Dr. Pepper. All off these things suggest that she is confused as to what is the right thing to do, and she is looking to me for guidance. She is more confused than I had guessed.

Despite that confusion, we ran into three couples from our church at dinner last night. She was able to greet them as easily and naturally as if she didn’t have Alzheimer’s. That seems to be well ingrained in her. I hope that continues for much longer.

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One Other Change That I Notice

Since my post yesterday afternoon, I remembered one other recent change in Kate’s behavior. She has become unusually sensitive to the music played in many restaurants and also sudden noises. I’m not sure if this has anything to do with her Alzheimer’s, but it is a very noticeable change from the past. This is not brand new. She began to be bothered by these things several years ago after her diagnosis. The difference now is the degree of sensitivity. It doesn’t take her long when we are in a restaurant to comment on the type of music being played. Again, it’s not just that she doesn’t like it. It’s that she seems so annoyed by it, almost like the reaction that some people have to the scraping of fingernails on a chalk board. (Is that still a problem in this age of digital technology?) Similarly, when we were at Barnes & Noble yesterday, the woman who was fixing the drinks in the café bumped a ceramic dish with something. The noise wasn’t that loud, but it was audible throughout the café. Kate responded physically and audibly. Almost all the other tables were taken. No one else seemed to notice. A little later, I bumped my stainless steel coffee cup against the table. No one else around us even responded at all. Kate certainly did. On at least one occasion recently, a young woman dropped her keys on the floor. Kate jerked and made a noise. The woman apologized. It was nothing for the rest of us, just Kate.