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Music continues to be great therapy.

An hour ago, Kate and I left the latest Live in HD at The Met production, La Boheme. We have attended quite a number of these operas that are broadcast live in movie theaters around the world. While there is nothing like the experience of being at The Met, we find that these live performances on the large screen offer an even better experience of the opera itself.

La Boheme, of course, is an emotional opera. Given the outstanding camera work, it has quite an impact on the theater audience. On and off throughout the performance, Kate reached over and squeezed my hand. As she also does at many live productions, she also expressed a few audible “Wows.” The final death scene is always moving, but I find that I am more affected by such things since I know that Kate is on that same path.

I was just as taken by the opera as Kate, but the added treat for me was getting to see her express genuine enthusiasm. There aren’t many things nowadays that elicit this kind of response. The fact that she continues to enjoy musical productions makes me feel good and reinforces my hope that she will retain her feeling for music a lot longer. It’s been another great day, and my pleasure wasn’t tarnished at all when we left the theater and she asked me the name of the opera we had just seen. She had enjoyed herself even if she couldn’t remember it.

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Adapting (?) to Having a Sitter

When my dad was caring for my mother who had dementia, I tried to get to get him to use a sitter when he needed to get out. He was always resistant, but he finally agreed to a short trial to see how he liked it. He didn’t like it and didn’t stick with it long enough to become comfortable with the arrangement. Now that I have had a sitter for Kate almost six months, I have a better understanding of his feelings.

That doesn’t mean that I am going to give up the sitter. It only means that I have not fully adapted to it just yet. Having cared for Kate for the past seven years, it is not easy to turn over some of that responsibility to someone else. Kate seems to have adapted much more easily than I have. Despite that, I feel a slight uneasiness just before the sitter arrives. I begin to wonder if Kate will be as accepting this time as in the past.

That has not been a problem. The past two times, however, she has not been as enthusiastic as she has been before. Thus, I wasn’t as comfortable when I left her today. Typically, when I leave, I tell her that I am going to the Y and will see her later. She usually says, “What am I going to do?” My answer is that she and the sitter can do whatever they like. I suggest that she could work outside, go to Panera, or stay inside and work on her jigsaw puzzles on her iPad. Until today, she has jumped at the mention of Panera. Today, she just took a seat with her iPad. When I returned home four hours later, that is where she was, still working her jigsaw puzzles.

After the sitter left, she looked bored. That didn’t surprise me. I would have been bored if I had been working jigsaw puzzles for four hours. It does, however, play into my apprehension about leaving her with a sitter. She often thanks the sitter and tells her goodbye when she leaves. She didn’t do that today.

I think I’ll approach this the way I do most things that come up. I’ll wait to see if this was just a bad day for Kate. Maybe when the sitter comes on Monday, she will be in a different frame of mind. Regardless, I am sure I will be uneasy when Monday arrives.

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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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The Importance of Having a Team

The other day I read a tweet by Ian Kremer noting the importance of having a team to aid the caregiver and the person with dementia. I asked myself, “Do I have a team?” It didn’t take me long to answer affirmatively; however, the members of our team don’t know they are on it. Let me explain.

In the typical usage of the term, a team suggests a number of people who work or play together to achieve a common goal. If we begin with this concept of a team, I think most caregivers would have to say they don’t have one. I certainly don’t. In fact, one of the most significant problems experienced by many caregivers is social isolation. I don’t believe it is because people don’t care. I think they are just unsure of what to do for people with Alzheimer’s and their caregivers. I have read a number of things that point to the need to give others a better understanding of how they can help, but I believe this is a long-term solution. Caregivers need something right now.

My own approach has been to take the initiative to engage others in helping rather than waiting for them to take the first step. Some of this has come about by asking directly. For example, on numerous occasions I have invited different friends to have lunch with us. Some of these have been members of the Sunday school class that I taught for ten years. I had already been in touch with them by phone and in class for years. It was only natural. I knew that they wanted to maintain some contact and also that it would be good for Kate.

We have several very good friends who live in Nashville, especially Kate’s friend, Ellen, who moved there following a stroke. We have paid more visits to those other friends than we might have done otherwise. None of these people would think that they are doing anything special to help us, but they are.

Some of these visits occur right here in town. Two days ago, for example, a childhood friend and his wife from West Palm Beach drove over from Gatlinburg where they have a condo. They come to Tennessee about four times a year. Almost every time they come, we get together either in or near Gatlinburg or in Knoxville. We always have a good time, and they have been very supportive since learning about Kate’s diagnosis.

There are many more members of our team in just about every place that we go. These include all the servers at the places we eat, the other customers at Panera or other places. That happened at lunch today. As we were leaving, I heard someone call my name. It turned out to be someone we know from church and my Rotary club. We stopped and chatted about fifteen minutes before moving on. He wouldn’t think of his having done something to lift our spirits, but just engaging in conversation did the trick. Because Knoxville is not a large city, we have these kind of experiences wherever we go.

Finally, I would say that when I decided to be more public about Kate’s Alzheimer’s, that served as an implicit invitation for people to ask how she is doing and how I am doing. Thus, when I see people without Kate’s being along, I find myself telling them how things are going. All of the volunteer activities in which I have participated have also generated additional support for me. Of course, those activities are fewer now, but they have been significant.

I shouldn’t overlook the power of a team of people with whom I communicate via email. I have two college friends with whom I exchange as many as fifty emails a day. The longevity of this connection and the variety of interests we explore have been invaluable. In addition, I have established contacts with a few friends and family who have their own personal experiences with Alzheimer’s. Those relationships provide communications that deal more specifically with issues related to dementia and caregiving.

I almost forgot to acknowledge the team of professionals who are more obvious members of our team. They would include Kate’s doctor and dentist as well as the sitters who are here at home with Kate three afternoons a week.

Except for the exception of these professionals, none of the people I mentioned would think they are part of a care team working to make our lives better. But that is just what they are doing. They have been important sources of encouragement and support without having to make any special commitment to visit us, to send food or cards, or anything other than relating to us when we meet. It is easy for them, and it is easy for us. Best of all, it works. Yes, we really do have a team of people working to make our lives better. They just don’t know that is what they are doing or how important they are. I am grateful for their presence in our lives.

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Could she be forgetting my name?

After we ordered our lunch today, Kate looked across the table at me and asked, “What is your name?” I misunderstood her and thought she said “her name.” She said, “No, your name.” I made some lighthearted comment, and she said, “No, seriously, what is your name?” I said, “Richard,” and she said, “Creighton.” Then she asked if I had another name, and I gave her my middle name.

This is the second time in the past few weeks that she has asked my name. In each case, I first thought she was just playing games with me. My second thought was, “Could she really be forgetting my name?” Today it seemed clear that she might be doing just that.

I do know that when we were in the waiting room of her dentist’s office this morning that she asked, “What are we doing here?” I explained that she was there to see her dentist. She said, “I don’t even remember who she is?” I also know that I had to wake her up at 10:00 to get her ready for her appointment and that she was quite groggy when she got up.

I know, of course, that there will be a time when she forgets my name and then forgets who I am. I am already witnessing that happen to close family members. I just hadn’t thought we could be approaching the time when her forgetting would include me. I’m not ready for this.

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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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Kate’s Changing World

I imagine those who read this blog on a regular basis would say that Kate and I have maintained an active lifestyle throughout the period since her diagnosis. You are right. We are busy. Upon receiving the diagnosis, we made a commitment to do as much as we could with our remaining time. I think we’ve done pretty well. I have become an event planner for our daily lives. That doesn’t mean planning lots of special activities although there have been plenty of those. It means making the everyday activities special. Things like our morning visits to Panera as well as eating out for lunch and dinner have become highlights of every day.

We do live full lives; however, that doesn’t mean that life is the same as it used to be. Even before Kate’s diagnosis, she gave up her most fulfilling activity as our church librarian because the early symptoms were keeping her from performing her duties as she knew they should be done. She had served faithfully for 19 years and had made the library the “go-to place” for Sunday school teachers and children. Her academic credentials (M.A. in English and second Master’s in Library Science) combined with her professional background as an English teacher and school librarian made her a perfect fit for her position at the church. She took great interest in helping everyone who was looking for just the right book(s) for a particular occasion or person. She worked nearly fulltime as a volunteer. Stepping down from this position was a major change in her life.

At the time of Kate’s diagnosis, she was still driving. She continued to drive another two and a half years before having an accident. Until then, she was free to do pretty much what she wanted. She and her friend, Ellen, had lunch together every Monday when I was at Rotary. They also got together at other times during the week and often went shopping together. They shopped for plants. They shopped for clothes. They shopped for knick knacks for their homes.

I know from looking back at my journal that Kate experienced lots of frustrations related to her worsening memory, but there were no outward manifestations that anything was wrong. It was only after three years that Kate told Ellen about her diagnosis. Ellen had not even suspected.

After an auto accident in which she totaled her car, Kate’s world became much smaller. She was now dependent on me to get her where she wanted to go. Of course, she also got around with Ellen, but it wasn’t like having the personal freedom that driving her own car had given her.

She continued to be active in PEO. She attended their monthly meetings, hosted meetings at our house, and occasionally presented the program. She also served on a scholarship committee that had responsibility for interviewing and recommending candidates for scholarships and grants through the national office. She began to forget meetings and found it difficult to fulfill her obligations on the scholarship committee. As her memory worsened, she couldn’t remember the other members. I suspect that she had difficulty participating in the conversations. She no longer wanted to attend and ultimately dropped out.

That is when two of her existing activities came to dominate her life. The first was the yard. She had always enjoyed tending to her plants. Now she could devote more time to that interest. The other was her computer. For a number years she had enjoyed working on photos and had started work on a couple of family albums. She never came close to completing one, but she was very active in picking out and editing photos. Even today, when someone asks her what she is doing, she tells them she is working on her family albums. Like most of us, she also used her computer for emailing.

At some point, I gave her an iPad and introduced her to several jigsaw puzzle apps. Little did I know how important these would become in the years ahead. With the progression of her Alzheimer’s, working on the computer became more difficult. She was frustrated. She stopped checking emails. Gradually, she stopped using the computer.

That left two activities she could do on her own, pruning the shrubbery and working jigsaw puzzles on the iPad. She had no trouble filling an entire day between these two activities. They were things she could do without having to experience the challenges of coordinating with other people. She could work at her own speed, and nobody was telling her what to do.

Her friendship with Ellen was her only close personal relationship. Our children had grown up together in the same neighborhood. Ellen and her husband, Gordon, were our very closest friends in Knoxville. Then in 2013, Gordon died. Two years later in August 2015, Ellen had a stroke while visiting her daughter in Nashville. She has never been able to return and is now in memory care. We try to visit her once a month, but the relationship can’t be the same now.

So Alzheimer’s cost Kate her volunteer job at church. Then she had to give up driving. She lost the ability to use the computer. She lost her best friend to a stroke. Her world has shifted from one of high involvement to only working in the yard and on her iPad.

One of my concerns right now, is that she has been spending less time in the yard than she used to. The weather accounts for part of it, but I think it is more than that. Three years ago, we were visiting Lowe’s two to three times a week for plants. She spent a good bit of her time planting them. Finally, she was running out of places for new ones. She could, however, continue to prune. She started her pruning a year before my dad’s 100th birthday party in October 2013. Gradually that turned into just “pulling leaves.” Right now there are few leaves left on any of our shrubs. That may also play a part in why she is not spending time in the yard. Spring will be here soon. I am eager to see if her interest in the yard will return to the passion it was before. I fear that it won’t. That will leave only her jigsaw puzzles. Everything else she does is dependent on me. She needs me more than ever. Yes, I keep her busy, but there is no denying that her life is dramatically different than it was 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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What does it mean to know someone?

Yesterday afternoon we attended a memorial service for a former member of my Sunday school class. At the reception afterwards, another friend approached me and said that she had spoken with Kate. She said, “She seemed to recognize me, or is she just good at pretending?” I said, “Well, she is very gifted in social situations, and I am so glad that she is. It means she is able to function much better than one might expect.” This exchange brings to mind something to which I have alluded several times before. People often want to know “Will she know me?” Or “Did she really know me?” The answer depends on what one means by “know me.”

What does it mean to know someone? I have known the woman whose memorial service was yesterday afternoon for at least ten to twelve years, yet I learned things about her in the service I had never known at all. Did I know her? I would say “yes,” although there were many things I did not know about her.

When Kate and I are out various places, we run into people I have known through my business. I would say that I know them. That is, I recognize them as someone I have worked with and often know their names and a little bit about them – the organization they are with and the position they held. On the other hand, I can’t say that I know them well. There are plenty of times I recognize someone but can’t call the name. There are also a few occasions when I can’t recall the name or the connection that we have had.

I think when people wonder if Kate knows them, it is that kind of knowing they are talking about. They wonder if Kate recognizes them and remembers the connection they have had in the past, not necessarily the name. What I know about Kate is that she will almost never remember the name of a person she meets. For her, and, I suspect other people with dementia, that is the first thing to go. Think about it, that is a common experience for those of us who don’t have dementia.

On the other hand, when we meet people in public situations, we can pick up non-verbal cues that do communicate that this is someone we know. We respond with a degree of familiarity even if we can’t recall the specific connection – church, work, a place we exercise, etc.

That is exactly what happens with Kate a good bit of the time. The best illustration would be with family members. When we are together, she remembers them and that they are family. In particular, I believe she still recognizes our children in this way, but she is beginning to lose the connection with their names. The grandchildren are different. Her history with them is much shorter. We don’t see them regularly. And they are growing up and changing all the time. In this case, I am sure that she knows she should know them, but she has lost the connection except when they are in their own homes. That provides a cue that she needs to make the connection.

I also know that Kate is losing her memory for people even in this “emotional” sense. She encounters more situations now in which she has no idea who the people are who are greeting her warmly. Her social skill comes into play at this point. She knows the appropriate responses.

So going back to my friend at the reception. Did Kate know her? I suspect not. I suspect that she simply responded to the person in the same natural way that she responds to anyone she meets. To that person, it seems that she knows them. That makes me happy.