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Is this going to become commonplace?

I have recently mentioned that Kate has taken different items of clothing with her when we have gone out. She hasn’t done that for a week or so, but that changed this afternoon. After enjoying sitting by the fire, working on her iPad, and listening to music for close to an hour and a half, Kate was ready to go somewhere. We are now at Barnes & Noble.

When we had gathered the things we wanted to take with us, I saw that Kate had her heavy red velour bathrobe and a pair of shoes in her hand. I didn’t say anything. I just waited to see if she planned to take them with her to the car. She did. I still didn’t say anything. As we started to get out of the car at Barnes & Noble, she used her normal hand signals to ask if she should take the robe and shoes in with her. It was then that I suggested that she leave them in the car. She accepted that without comment. I’ve added this to my growing list of unexplained mysteries.

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Little Things

We’ve had a string of good days lately. I say that because Kate seems happy and has appeared to enjoy herself. It doesn’t mean there has been any lessening in the other symptoms of Alzheimer’s. Her memory only gets worse, and I observe new signs of confusion.

As we prepared to leave the restaurant after lunch the other day, she asked (using hand signals) if she should take her napkin with her. That is the first time I recall her ever asking that. She has frequently taken paper napkins. She has used them in the car to wipe the saliva from her mouth or to store in a basket in our garage (after she has torn them into smaller pieces). This time it was a cloth napkin. Perhaps I shouldn’t have been surprised. On several occasions, she has asked if she should take her glass with her. Two or three times she has actually taken her glass. In two instances I caught her and returned the glass. Another time, the owner of the restaurant saw her walk away with the glass and asked if we would like a “To Go” cup.

Later at dinner that night, she asked, “Are we in Fort Worth?” I told her we were in Knoxville. She said she thought she recognized the buildings across the street as buildings in Fort Worth.

When we got home, I turned on the TV to a recording of CBS Sunday Morning while she worked on her iPad. After a while, I told her I was going to take my shower. She had her robe in her hands, pointed to herself, and then pointed in the direction of the hallway to her room where she keeps her clothes. This is one of those situations in which I misinterpreted her hand signals. I thought she was going to her room to get a night gown. I said, “Yes,” and she left.

When I got out of the shower, I noticed that she wasn’t there. I just thought that she was taking a while to find something and would be back shortly. When she hadn’t come back in another ten minutes, I went to check on her. The first thing I noticed was that all the lights were out. That made me wonder if she had gone to bed in her room. That has happened before, but it had been a long time. I called her name, and she said, “I’m in here.” She was on the bed in the guest room next to our bedroom. It turned out that she thought I meant for her to go to bed in there. The only thing I could figure out was that when I thought she was asking if she should get a gown for bed, she was really asking if I wanted her to go to bed in the guest room.

I felt really bad about that. I know that she has become much more accepting of my suggestions about clothes that she wears. She also asks me what to do a lot more than in the past. In this case, I felt like the master who had sent her away to her room. I quickly explained that I never would suggest she sleep in another room without me. She said she would prefer to be with me, and I told her I always wanted her to be with me. This is just one more of those things I’ll never understand.

On a brighter note, last night she was lying in bed working on her iPad while I was reading in my chair. She became unusually talkative. She began by saying she was glad that we had married and that we had had a happy marriage. This is a conversation that we have a lot. We both reflect on the things for which we are grateful, especially for our marriage. She talked about our children and how proud she is of them. This led to her talking about her mother and how glad she was that we had kept her in our home for the last five and a half years of her life.

All of these are things we have talked about many times, but there were two things that stood out about this occasion. One is that she would stop and start to go back to her iPad. I took this as a signal that she was finished, but very shortly, she would continue the conversation. This must have happened three or four times before she really stopped. It made me feel that she was having a powerful sense of gratitude.

The second thing that stood out was her talking about her mother’s having stayed with us during the last years of her life. Although she was not detailed in her description of those days, she clearly had not lost her memory of our having kept her. I have discovered so many things about which she has absolutely no memory that I was thrilled to know she remembered this special time. Moments like these are precious.

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Reflecting on Change

When Kate was diagnosed seven years ago, I did not expect that we would be as active as we are today. That is not because her condition has not changed since then. It has changed considerably. I don’t think I have always captured the changes as well as I might have. In preparation for creating this blog, I have re-read every entry posted in the Archives and have been surprised at how much of my description of Kate’s symptoms seem to be the same as they are today. For the most part, I believe that relates to what I would say is the lack of precision in the words I have used. For example, early on I made many references to problems with her short-term memory (STM). Today, I am saying the same thing; however, the changes between then and now are dramatic. If I had been able to use a mathematical scale (like doctors use when they ask patients the level of pain they are experiencing) instead of words, I might have been using numbers like 6, 7, or 8 where higher numbers indicate better STM. Today I would use numbers like 2 or 3 to reflect her STM.

To give you a better idea of what I mean, yesterday she asked me to tell her my name. I told her. She said she knew that. Then I asked her to tell me my middle name. She couldn’t do it. I told her. Less than a minute later, she could not recall it.

Her long-term memory (LTM) was still pretty good at the time of her diagnosis. It has gradually gotten worse over time. As far back as 3-4 years, I was aware that she was slipping on details about family events that had been important to her. Until the past six months or so, she talked a lot about her mother and her family. She is not doing that now. I think it is because they are fading from her memory. When I mention them to her, she responds very generally that conveys she remembers these past events. She does not say anything else about them.

In recent weeks, she has more frequently asked me to tell her names of people (including our children, grandchildren, and me). She also asks me to tell her “where we are.” Sometimes she is asking the name of the restaurant in which we are eating. More often she means, “What city are we in?” While at Panera two times this past week, she asked, “Does this place have a name?” As we were leaving Panera this morning, she asked, “Where are we?” I told her. Then she asked, “What state is it in?” These questions represent significant changes from even last year.

If I had known these symptoms seven years ago, I might have underestimated how much we can still enjoy ourselves. It saddens me to know how little memory she has now. At the same time, I am encouraged by the pleasure we get out of life. Tonight is Opera Night at Casa Bella. We will sit with the same people we have sat with the entire four or five years we have been going. Kate doesn’t remember their names and couldn’t tell you anything about them if you asked. On the other hand, she will feel comfortable with them even if she doesn’t say much. On top of that, she will love the music. How grateful I am for that. I know that, too, will change, but I am optimistic that will be a while.

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Some things change. Some things haven’t.

I tend to focus on the changes that are going on in our lives, but it strikes me that there are some things that continue. I was reminded of that this morning when I went to the back of the house to tell Kate that the service man from our heating and cooling service was in the house. When I got to the door of the room, I spoke her name. She screamed. I had frightened her in a way that I have not done in a long time. It wasn’t long after her diagnosis that I first became aware of how easily she can be frightened. That led to my announcing my presence as I came in the door whenever I had been out. These days I am with her except for those days she has a sitter, so I haven’t thought as much about startling her in quite a while.

It is not just around the house that she is startled. This frequently happens when we are in restaurants. A couple of days ago at Barnes & Noble, two women walked by our table. As they did, one of them dropped her keys. Kate jumped and made a sound  that was loud enough for the women to hear. That brought an apology from the one who dropped the keys. As much as Kate loves children, she is sometimes  bothered by their high pitched voices.

One of the other things that has annoyed Kate is the music played in restaurants. This may have been a problem for her before Alzheimer’s, but I don’t recall her making an issue of it the way she does now.

She still has Déjà vu experiences although I don’t think I have heard her mention anything in the past few weeks. Maybe that is something that is changing rather than a constant.

Her use of hand signals began one or two years ago. For example, instead of asking me if she should take her iPad with us when we go out, she might point to her iPad and then point in the direction of the garage. Similarly, if we have our own cups in the car when we get to a restaurant, she often points to her cup and then to the restaurant. In the evening, she often brings a robe into our bedroom and points at the robe and then to herself and then to her chair or the bed. I don’t always read her signals correctly, but she rarely helps me out with words. Of course, usually I know what she is asking.

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More Things I Can’t Explain

Kate has been with the sitter this afternoon while I went to the Y and ran a couple of errands. When I returned, I discovered that they had not been to Panera, something they almost always do when I am gone. When I expressed my surprise, Kate said, “We could go now.” I asked if she would like that. She said she would.

While I was putting my gym clothes in the laundry basket, she went to her room. She met me in the family room in a few minutes. She was carrying an extra top and a pair of shoes although she was already wearing a top and shoes. I didn’t say anything. I wanted to see if she planned to take them with her to Panera. As I turned out, she did. When we arrived at here, she left the extra pair of shoes in the car, but she brought her top in with her. She tossed it on top of the table where she and I are seated. That’s just one more thing I can’t explain. I wonder how many other caregivers have had a similar experience. I suspect a lot.

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Dinner With Friends

Last week at Casa Bella, one of the couples with whom we shared a table invited us to join them for dinner last night. They are originally from Ohio where they graduated from Kent State. They lived in Buffalo for several years as well as Fort Worth. That gave us a variety of similar experiences to talk about. We fly into Buffalo every year when we go to Chautauqua and Niagara-on-the-Lake. Since Kate grew up in Fort Worth, and we met at TCU, that gave us more common experiences.

I was not at all surprised that Kate did not remember them when I told her we were meeting them for dinner. On the whole, she got along quite well although she said a number of things that may have seemed strange to them. Very early in the conversation, they brought up something about the time they lived in Fort Worth. Only moments later she started to tell them she was from Fort Worth. She stopped when I looked at her. She must have thought I was going to contradict her in some way and gave me a funny look. Then she couldn’t remember what she was going to say. I stepped in and said something about their having lived in Fort Worth. She looked surprised.

A little later, the wife asked Kate where her children live. She couldn’t remember and looked at me. I jumped in and told her and told them about the grandchildren as well. I am sure they both wondered why Kate didn’t answer for herself. At one point in our conversation, she brought up her cousin who lived in Alaska.  Her timing was off, but she had said this in response to the mention of an Alaskan cruise the couple had mentioned earlier.

Before we left the house, Kate did something else that was strange. We had a warmer day yesterday, so Kate didn’t need to take a sweater or jacket with her, but she did. In addition, she brought a pair of socks even though she was already wearing socks. Even more surprising is that she took the pair of socks into the restaurant and put them on the table beside her fork. I am not sure our friends noticed, but if they did, I am sure they wondered why she had done this. The only explanation I could have given was Alzheimer’s.

It was a short day for Kate. She didn’t get up until after 11:30. We didn’t get to lunch until after 12:30, and the sitter met us at Panera at 1:00. When I returned just before 5:00, she asked me what she could do. I told her it was about time to think about dinner but that we could stop by Panera if she wanted. She did, and we were there about 15 minutes before heading to meet our friends at the restaurant. This was the first time I have sensed that she might have been getting bored just being at home with the sitter. It is another indication of how much she likes to get out of the house. I still hope that our spring-like weather will get her out in the yard again.

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Update on Sleeping

The time is 11:39 a.m. as I begin this post. Exactly one hour ago, I tried to wake Kate up so that we could have lunch before the sitter arrives at 1:00. She finally got up about five minutes ago. As I have noted in recent posts, she has been sleeping later over the past couple of weeks. One Saturday, I let her sleep until 11:30. Another day I woke her at 12:20. In each of those cases, she got up without a problem. I can’t account for why it has been so difficult for her to get up today. She went to bed around the same time as usual. The past couple of days she has slept until ten o’clock. At first, I was associating her sleeping later to the impact of having had the flu. Now I am wondering if this might not be another of those normal symptoms of her Alzheimer’s. Of course, it could be some combination of the two.

This morning, I received a reminder that I have an ophthalmologist’s appointment at 10:15 Friday morning. That makes me wonder how much trouble I may have getting her up and ready to go with me. I don’t want to leave her alone. At the time I made the appointment, I would not have thought it would be a problem for Kate to be ready that early in the day. At least we are not going out the night before.

This is just one more of the many little things that crop up that would have been of no consequence before Alzheimer’s.

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Movies Becoming a Thing of the Past

Movies have been an important part of our activities during our marriage. They have been especially important during the seven years since Kate’s diagnosis. For at least a year now, it has become much harder for her to enjoy them. I continue to try to find something that might appeal to her, and sometimes I am successful. The last one she enjoyed was a recent one, Darkest Hour. I had hesitated to try it, but when I told her what it was about, she wanted to see it. I think it must have been impossible for her to follow. I am sure that she understood that it was about Churchill and World War II. I am also confident that she could sense the drama involved. These are the things that must have caused her to like the film.

Today at lunch I checked to see if there might be another film that we could try. I saw that one of our theaters was showing The Philadelphia Story with Katharine Hepburn, Cary Grant, and Jimmy Stewart. Knowing that Kate has always liked old movies and each of those stars, I asked if she would like to go. She jumped on it. I bought the tickets right then. We finished our meal and went directly to the theater.

It is a film that is certainly dated, but it is also a classic. It came out in 1940, the year I was born. I thought it was fun to see these stars at such an early stage of their careers. Several times during the movie, I heard Kate yawn audibly. I didn’t think that was an encouraging sign. It wasn’t until we got in the car that I asked what she thought of the movie. She said, “I don’t even know what it was about.” I told her she was a good sport, that I appreciated her trying movies even if they didn’t turn out to be winners. She said, “Well, you can’t expect every one to be hit.” So true. I am finding that the hits are fewer and farther between these days. We still have plenty of things that entertain us, but I hate losing something that has been so important in the past.

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Things I’ll Never Know

So much of Kate’s behavior is normal that I am struck when she surprises me with something unusual. A couple of things have happened in the past day or so. The first occurred late Thursday when we were preparing to leave for dinner. All day she had been wearing two tops that didn’t match. At first, the one on top was inside out. I mentioned it to her, and she began to take it off. I asked if she wanted me to tell her. She said, “Absolutely.” Then I told her I didn’t think the one on top matched the one underneath. She said, “Who cares?” I let it go as I usually do.

As we were about ready to leave for dinner, she was still wearing the unmatched tops. I suggested she might change for dinner. She accepted my suggestion and only asked, “What would you like me to wear?” I brought her something else, and she put it on. As we were walking toward the door, I noticed that she was carrying the two tops she had just taken off along with a robe. I told her I didn’t think would need those; so she left the tops in our bedroom. She came back with the robe in her arms and took it with her to the car. I didn’t say a word. I’ll never know what motivated her to take her robe with her.

Last night something else happened. She had gone to bed about 8:00 while I took a shower. I usually turn out the lights and leave her in the bedroom to sleep while I turn on some music in the family room and read. I don’t usually hear from her until the next morning. About 9:15, she came into the family room and asked if I would come to bed with her. She said, “It’s easier for me to go to sleep if you’re with me.” I joined her.

When I got in bed, I held her. In a moment, she said, “You’re my daddy. I feel safer when you are here.” Then she said, “I’m your little girl.” I assured her that she was. A couple of times she said something else and called me, “Daddy.” Then she appeared to go to sleep.

When things like this happen, I try to imagine what was going on in her brain. I’ll never know.

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Sleeping Changes

It is 11:22, and Kate is just getting up. Even that is only after I started gently waking her about 10:50. I hate to wake her, but the sitter will be coming at 1:00, and we need to get lunch before then. As I have noted before, since coming down with the flu, she has been sleeping more. That has meant getting up later since she has still be in going to bed about the same time. Last night we went to Casa Bella for dinner and didn’t get home until 9:00. Still, this is unusually late for her to get up.

Although I think she should be over with the flu now, it may be that this is one of the aspects that is hanging on. She is not coughing much at all now, but once in a while she does. It sounds very much the way she did when she got sick almost two weeks ago. Her being tired may be another residual symptom.

I’ll continue to monitor her sleeping to see if this represents a more permanent change. I have to remind myself that two or three years ago, she was sleeping more than she has in recent years. The difference is that she was taking both morning and afternoon naps. She gave that up a good while back though she had a long nap while the sitter was here two days ago.

I have very carefully arranged for the sitter to come in the afternoon so that Kate and I could spend the mornings together. If she starts sleeping this late every day, I will spend much less time with her. On a day like today, I will have about an hour or so with her for lunch. Then the sitter will have her for four hours. When I return, it will be within an hour of dinner time. Then we are winding down for the day. That would be a big change for me. I’m not sure I am ready for that.