Posted on

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.

Posted on

Simple Pleasures

Recently, I have connected with a number of other caregivers on Twitter. Most of them are authors who have written about their experiences as caregivers. Others are people who are working to educate the public about the variety of issues surrounding Alzheimer’s and other forms of dementia.

It has been especially encouraging for me to discover how many other caregivers are able to find moments of pleasure in the midst of the changes that are ongoing for the ones they care for. It is not that everything is rosy or that no one has experienced frustrations and other challenges. It’s that there are always moments of pleasure as well.

It’s almost 2:30 p.m., and Kate and I have faced both the good moments and more challenging ones today. Her good mood from the very beginning of this day is sufficient to make me say it’s been a good day, but there is much more for which we are both grateful. It’s a cool, rainy day, and we are sitting in front of the fireplace in our family room, something we both enjoy but don’t take advantage of very often. Of course, I have music playing in the background. She is working puzzles on her iPad while I write this entry for my blog. All is well right now, and I am confident the rest of the day will be the same.

At the same time, we have had a few moments I would have preferred not to have experienced. Even though she’s been in a good mood, she has gotten irritated with me a few times. One of those was when she thought I was taking too long to get ready for Panera this morning. When we got in the car, instead of saying something like, “Give me a break. I’ve been waiting two hours for you to get up,” I said, “I guess I do keep you waiting sometimes.” She responded in a very forgiving way and said, “You don’t keep me waiting very often.” Her irritation was over.

Twice at lunch she asked me “Where are we?” I told her Knoxville. The second time I added, “Would you like to guess what state?” She quickly said, “Tennessee” and added, “See, I’m smarter than you think I am.” It saddens me when I see her unable to easily identify where we are when we are not traveling. Just a few months ago, this would not have been a problem.

When I ordered a kale salad at lunch, our server told me they were out of kale. I ordered another salad and asked if I could have a serving of brisket with it. As she walked away, Kate said, “What was that all about?” She hadn’t been able to follow our very brief and simply conversation. When I see instances of her being confused over normal things like this, I have a greater appreciation of her inability to understand what is happening in movies or plays. She is able to enjoy musical theater and opera because of the music itself even if she doesn’t have any idea of the plot or who are the primary characters.
I know all too well that in the long run that many of life’s current pleasures will not provide the same enjoyment they do now. For now, we live in the moment and are grateful.

Posted on

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.

Posted on

A Big Day for Panera and Barnes & Noble

By now, you know how much we frequent Panera and Barnes & Noble. I think we may have set a record today. We were at Panera from 8:30 to 9:30. Then we were home an hour while Kate rested. We were back shortly after 10:30 and remained there until 11:50 where Kate had her lunch.

I left for Rotary shortly after the sitter arrived at noon. When I returned home at 4:00, the sitter said Kate has rested a while after left. Then they went back to Panera at 2:00. I arrived back at home as they returned from Panera at 4:00.

Knowing that we still had almost two hours before we would have dinner, I suspected Kate would want to get out of the house even though she had just returned home. I decided to offer her a choice. We have a DVD of some of the films her father had made during the 1930s. It includes her mother’s graduation from college and some of Kate’s earliest days as an infant as well as some family times at her grandparents’ home. I asked if she would like to look at the DVD or to go someplace like Barnes & Noble. She quickly answered the latter.

Based on our recent experience, I suspected that would be her choice. Since she hasn’t been working in the yard, she has spent very little time in the house. There have been a few occasions in which I have suggested that I turn on some music and sit together in the family room. She has accepted, but she never lasts very long at all. The only time she will sit down and enjoy working on her iPad at home is after dinner in the evening while I watch the PBS Newshour.

Recently, I have tried a DVD with an opera. She hasn’t watched, but she has enjoyed listening. Last night, I hooked up my laptop to the TV and showed her a slide show that I had made of our trip to Switzerland three years ago. She seemed to enjoy that but not as much as the opera. I think that was because she still connects with music whereas as she has no memory of Switzerland. It was like looking at a travel show on TV. She did enjoy seeing the pictures of us and seemed to appreciate the beauty of Switzerland.

This desire to be out of the house must relate to being in a setting where there are other people. She notices some of the tutors here at Barnes & Noble and even comments about them. For example, she told me a little earlier how impressed she was with the tutor at the next table. She told me how supportive he was.

I must acknowledge that I also enjoy the stimulation of public situations. We are not  always engaged in conversation, but I do feel a connection with the others who are here. That is especially so for those we see most often. As I have said before, I have deliberately chosen to eat out for all our meals and to make our morning visits to Panera and afternoon visits to Barnes & Noble. I didn’t, however, fully anticipate how much this might mean to both of us. It gives us a feeling of being “out and about” at a time when our world is really shrinking.

Posted on

Trying to Figure Out Kate’s Sleeping Pattern

If you have been reading my recent posts, you may recall that I have commented on a change in Kate’s sleeping pattern over the past several weeks. She has been sleeping later than usual. I have had to waken her a couple of times around 10:00 or so to get someplace. Most of the time I simply let her sleep as long as she wants. One day she slept until 12:20. There have been several days she slept until 11:00 or after.

During this same time period, there have been a few days when she has gotten up early. One of those days was this morning. I was working in the kitchen when she walked in about 8:10. She was dressed and ready to go to Panera. Then I had to get ready, but we were there by 8:30. That is still earlier than our average arrival time before she started sleeping later.

I wondered how the morning would go since I knew she wouldn’t want to remain at Panera until lunch time. As it turned out, she was ready to leave by 9:30. She was tired and wanted to rest. She came inside and is still in bed at 10:25. I hope she will get up shortly so that I can get her lunch before I have to leave for Rotary. The sitter is scheduled to arrive at noon. If she is not awake before 11:00, I’ll get her up.

Over the seven years since her diagnosis, she has made a number of changes in her sleep habits. When first diagnosed, she wasn’t sleeping well at night. That led to her sleeping later in the morning. A little later she settled into a fairly regular sleep routine. I think we can thank Trazadone for that.

(At this point, Kate walked into the room. She was ready to return to Panera.)

We are now at Panera, she apparently had enough time to rest. This works out well for me because it also gives us plenty of time to get her a sandwich before we go back to the house to meet the sitter, and I leave for Rotary.

As I was saying, Kate got into a pretty regular sleep routine. She usually awoke fairly early (between 7:30 and 8:30). She got up, got some apple juice and yogurt, and returned to our bedroom where she worked jigsaw puzzles on her iPad. That continued for a long time until the past few months. She started getting up slightly later and getting dressed. After that, she was ready for Panera. That meant she was drinking less juice and eating less yogurt. A couple of weeks I had to throw out yogurt that had expired. I had already stockpiled a good bit of apple juice. Now I am only buying V8 for myself.

At first, I thought that the current change might be caused by our having the flu, but she has continued to sleep later, and it was well beyond the time we recovered. The problem that her sleeping later presents for me is that I spend less time with her in the morning. In addition, I sometimes have to rush her a bit for us to get lunch before the sitter arrives. I guess time will tell where this is going.

Posted on

“So, how are things going?”

I am often asked how Kate and I are doing. I appreciate the concern, but I always ask myself, “What is the best way to answer that question?” For example, as I reflect on the past week, I would say it’s been a good one. I think that’s true despite my having lost Kate for 20-30 minutes yesterday afternoon. In a previous post I commented on our having had several musical experiences that were special highlights for us. On top of that, Kate has been in a very good mood for the past few days. She’s even been in a good humor at the beginning of the day, something that is more challenging for her since it takes her a while to wake up. Virtually every day ends well. That was certainly true this week. I might say that “things are going very well.”

My typical response, however,  is to say “remarkably well.” I believe that has been a good summary response the entire time we’ve been on this journey. On the other hand, it doesn’t really capture the whole story. For most of the past seven years, Kate has experienced frustration over not remembering things she had wanted to remember or having difficulty with tasks that she used to do with ease. The past couple of years she has been moving beyond that. I don’t believe she connects any of her behavior with her diagnosis the way she did initially.

Over time she has become increasingly bored when she is in the same place for very long. That has been a special problem since she hasn’t been working in the yard as much during the past few months. Almost every day, we move from home to Panera, to lunch, to Barnes & Noble and/or Panera, to dinner, and home for the night.

30-minute break.

I am writing this at Barnes & Noble right now. Thirty minutes ago, a man whom we met here last week dropped by our table to say hello. That led to a good conversation in which we shared a little information about each of us. I am sure that for Kate the highlight of our conversation was her discovery of his Texas roots in Grand Prairie. As she has aged, she has developed a more typical pride in her native state. We discovered several other people with whom we have friendships including a former pastor of ours when we were at TCU. We have many experiences like these at just about every place we go. It makes me wonder if this is part of why Kate likes to get out of the house as much as she does. I know these kind of social interactions boost my spirits. They remind me that even with change, we still enjoy ourselves.

Ultimately, everyone’s life is a mixture of good things and bad, not just those of us who are caregivers. I recognize that some people seem to enjoy a disproportionate amount of good things. Kate and I believe we are among them, and we both feel for those whose struggles have been much greater than our own. That said, I am deeply saddened as Kate continues her decline. Our lives have changed significantly in many ways since her diagnosis. They will change even more in the months ahead. That’s the bad news. The good news is that we continue to have enriching experiences together and with others.

My final observation about answering the “how are things” question is this. The precise answer depends on a number of different things like who is asking the question, how much does the person really want to know, and how much time do you and they have. As I said earlier, I think we are getting along “remarkably well.” That is probably a pretty good response for most people who inquire. For a few others, I may go into greater detail.

Posted on

It is easy to lose her, but more difficult to find her.

I thought this would never happen again, but yesterday, I lost Kate at Barnes & Noble. On the way back from lunch, I suggested we stop there and get something to drink. Kate wanted to go to the restroom, so I led her there. She was close behind me until I turned right before the hallway where the restrooms are located. I turned around to point to the ladies room door, and she wasn’t there.

Figuring that she hadn’t seen me make the turn, I started looking around the bookstore. I didn’t find her anyplace. I told one of the staff that I had lost her and gave her a description in case she saw her. Then I saw two women walking in the direction of the restrooms and asked if they were going there. They said they were, and I told them about Kate, gave them her name, and described what she was wearing. They came right out and said she was not in there.

The restrooms are in the back part of Barnes & Noble near the exit to the mall. In fact, the exit is about 10-12 feet straight ahead from where I had turned toward the restrooms. I decided to look in Belk’s which is a short distance from there. . I didn’t go through the entire store, but I didn’t see any sign of her and went back to the bookstore where I found the two women with whom I had spoken earlier. They had been looking around Barnes & Noble and hadn’t found her. I decided to check with the store about contacting security. They did that for me.

Two security officers arrived. I showed them a picture of Kate and described what she was wearing. They asked me to stay put, and they would look in Belk’s and around the outside of the mall. About 10 minutes later, I received a phone call that they had found her. She was in Belk’s. In a few minutes, they were back at Barnes & Noble.

Kate did not seem panicked at all, but she was relieved to see me. In each of the other instances in which she has been lost, she has been very calm and even joked about the situation. That did not occur today. I suspect that may be because her memory is so bad now that she had absolutely no idea where she was and, of course, no way to find me. She probably didn’t remember we had been in Barnes & Noble. It is impossible for me to fully grasp what she might have been thinking or feeling. I know we were both relieved. She had been missing between 20 and 30 minutes. I am just glad we were in a place where it was unlikely for her to have gone far. The possibility of losing her is one of the reasons we have stopped our major travel. This experience reinforces my belief that that was a good idea.

Posted on

A Beautiful Morning

It’s cool, but sunny, this morning. I’ve had my morning walk and am back at home taking care of a few household chores. I’ve always liked mornings. It is so peaceful. That is especially true on the weekend. I didn’t see anyone else walking today. I saw only one runner. I was a little late to see any vestiges of the moon. Yesterday I got to see the full moon. That was a bonus.

I am in the kitchen which serves as my office. I have some soft piano music playing in the background. Kate is sleeping. This is wash day for me. I have one load in the dryer and another in the washer. I’ll soon be folding clothes while the music continues. I don’t think I had ever washed a load of clothes until about four years ago. I have found it to be one of the more pleasant household chores. That is especially true when combined with my love of the morning with my love for music.

Quiet mornings can be a time of reflection. Today I’m thinking about the past week. It has been a good one for Kate and me. It was punctuated by three musical highlights. Last Saturday it was the Live in HD at The Met’s performance of La Boheme. Thursday it was opera night at Casa Bella. And last night, we finished the last part of Turandot that we had started earlier in the week. We have seen it less often than some other operas, and Kate did not express a lot of enthusiasm the first night we watched. She got caught up in it last night and loved it. It’s been a good week for music, and I get an extra measure of happiness out of seeing her enthusiasm. Not many things elicit this same emotional response. I hope this continues for a long time.

Have a good day.

Posted on

Kate works so hard to remember names and places.

Although she still doesn’t talk about her Alzheimer’s, it is obvious that she is struggling to remember the names of people and places and where she is at any given moment. For example, this morning as we pulled into a parking space at Panera she said her mother’s full name. I said, “That’s right.” She said, “We’re both right.”

Another example occurred after lunch, she asked, “North Carolina or Tennessee?” I answered, “Tennessee. Knoxville, Tennessee.” Since both of these exchanges were not prompted by me, I have to believe she was thinking about both of them and wanting to be sure. I wonder how much time she spends trying to think where she is and what are the names of her family and close friends.

Posted on

A Great Night Out

As I begin to see changes in the number of things that Kate enjoys, I am especially encouraged when she continues to appreciate live musical performances. That was again the case last night at Casa Bella. The singers and the program were especially good. The evening got off to a good start when the first vocalist sang one of Puccini’s arias. It was the first time I recall seeing the audience stand up and applaud on the very first song of the evening. In fact, I have only seen an audience stand and applaud on a couple of other occasions. Kate, who right now wouldn’t even remember that we went out last night, loved it. That always makes me happy. The fact that we share the pleasure equally is a bonus.