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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.

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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.

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“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.

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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.

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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.

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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.

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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.

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How My Dad Influenced My Approach to Caregiving

Like many other people in their senior years, I am now much more aware of ways in which my father influenced me. I have been especially mindful of the way he cared for my mother who had an undiagnosed form of dementia and how his approach to caregiving has been a model for me.

Dad had three qualities that helped him to be a better caregiver. First, he was an optimist who responded to the problems in his life by focusing on how to solve them. He faced far greater problems in his life than I have, but he never let them get him down. That occurred early in his life when his father left him and his mother. As a teenager he had to help support the two of them. Not only that, he was a successful student and athlete. Later, in his own business he faced many challenges but faced them as opportunities.

Second, he was a man of initiative. He didn’t sit back and wait for things to happen. As he faced potential isolation as my mother’s sole caregiver, he became active in his Kiwanis club. He and my mother were active in a local senior center. The two of them were volunteers with Meals on Wheels. At the time, I thought it was just a way to be active, and it was. But there was more to it. I now suspect it was driven by his own attempt to keep my mother engaged.

Even though he was in his 80s, he became an avid user of the computer and kept up an extensive communication with many people. He was also very extroverted and engaged in conversations with other people wherever he was. As Mom declined, he continued to take her with him wherever he went except to his Kiwanis club. During that time, he dropped her off at a daycare center for people with dementia. Otherwise, he had no help.

Third, although he had no special skills or knowledge about dementia or caregiving, his love for my mother coupled with the two qualities mentioned above made him a successful caregiver. Looking back, I realize that Dad did not tell me much about what he was going through. I do recall his saying that she would get really mad at him and then would be over it in a few minutes. I also remember his describing how he tied a string around his wrist and Mom’s wrist. That way he would know when she got up during the night. I recognized the toll it began to take on him. My brother, Larry, and I worked hard to arrange in-home care to help him. To put it mildly, he was very resistant to having such help. He was determined to do it himself. She slept in the same bed with him until a few nights before she died. At that time, he was turning her every two hours where she lay in a hospital bed beside his own bed.

As I said earlier, Dad had a more challenging life than I have had, but I am a lot like him. I don’t think he was as analytical about what he did as I am. I think he simply did what he felt was right. His qualities naturally helped to keep his stress at a minimum while also taking care of my mother.

I have had much more experience with caregiving and with a lot of the written work about caregiving, how to care for your loved one, and how to take care of oneself in order to be a better caregiver. I still believe that the qualities I inherited from him and observed in his life have been the most significant influences on the way that I am caring for Kate. I am grateful to him.

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Changing Attire for Bed

Up until the past six months or so, Kate’s choices of things to wear to bed have been the same as they were throughout our marriage. She has always been very conventional. She has several night gowns as well as a collection of robes. Her general pattern was to put on a robe over a gown and read before going to bed. Then she would take off her robe when she went to bed. More recently, she has made a change.

This began several months ago when she would bring a robe, but no gown, into our bedroom. When I noticed this, I asked if she would like me to get her a gown. She would either say yes or tell me that she would get one. After this happened a few times, I started getting a gown in advance and putting on her side of the bed. She often chose to wear what I was selecting but sometimes ignored what I had brought. In those instances she would get a robe.

For a while, I continued to select a gown for her, but it appeared from what she actually wore to bed that she preferred to sleep in a robe. I asked her if there were something about a robe that she preferred over a gown. That was silly for me to ask. Naturally, she was unable to explain and didn’t want to talk about it.

Since then, she has been following a fairly consistent routine. She usually sleeps in a robe, but once in a while she picks out a gown. There have been a few times when she has slept in her clothes. Last night, however, she made another change. We had come back from opera night at Casa Bella around 9:15. She got ready for bed pretty quickly. I got her medications. She brushed her teeth. Then she undressed. Instead of getting a robe or a gown, she put on the cardigan sweater that she had worn over her top when we went to Casa Bella. As I often do, I am wondering where this is going.

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More Examples of Kate’s Memory Loss

This is a follow up to my previous post in which I noted some of the changes in Kate’s memory. Since then, I have observed several other examples. One occurred at lunch when she asked, “Does this place have a name?” This was at Carla’s Trattoria where we eat lunch once a week. This afternoon as we were leaving for her monthly massage she asked, “Are we still in Tennessee?” Of course, this is the correct answer, but the question showed she wasn’t sure. And we have lived here almost 47 years. This is much more a commentary on the weakness of her long-term memory as opposed to her short-term memory.

When I picked her up from her massage, we drove directly to get our haircuts. As we were leaving from getting our haircuts, I told her we had a little more than an hour before it would be time to leave for opera night at Casa Bella. I asked if she would like to go home or stop by Panera. She said she wanted something to eat. I suggested we go to Panera and get a bagel. That suited her. Just a few moments later, she asked where we were going. She had already forgotten.

Once at Panera, I selected a table and she went to the restroom before taking a seat that was in a different section of the restaurant. Knowing that she would not immediately find me, I stood up where I could see her, and she might see me. In a minute, I saw her. She was looking all around. She had absolutely no memory of where the table was. I waved my hand, and she noticed me. Then she gave me a dirty look and shook her head as she walked toward me. She was obviously annoyed that I hadn’t made it easier for her to find me.

That reminds me of something else. On several occasions recently, she has asked me to wait for her outside the restroom at a restaurant. Those are the first times I ever recall her doing that. That in itself shows a greater recognition that she won’t be able to find her way back to where we were sitting.