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A Peaceful Sunday

It was a very peaceful morning in our home. Kate slept until almost 11:00. I also slept a little later, 6:25, after initially waking at 5:15. I had breakfast and got in a walk of almost three miles. I checked email and did some reading in a book I discovered recently, The Dementia Handbook: How to Provide Dementia Care at Home by Judy Cornish. Her approach to caregiving for people with dementia has captured my attention. (I’ll say more about that below.) As always, I’ve had music going constantly. This morning it was a collection of classical sacred music. This is the closest I come to meditating.

The Dementia Handbook led me to think about how Kate and I have approached her Alzheimer’s. At the time of her diagnosis, we were determined to make the most of our time together although we didn’t know how much time that would be. The doctor gave us the impression that it might be as long as twelve years but, possibly, less. I am sure neither of us imagined that she would be getting along as well as she is almost 7 ½ years later. It is really remarkable how well she does, especially since her memory is so very poor.

I read a lot of different things about dementia. One of those is that people with dementia retain abilities related to emotions far longer than they remember names and facts. I was shocked when I first discovered that my mother did not know me. For a long time, she had greeted me as she had all her life. I assumed, incorrectly, that she knew I was her son. In a sense, she did know me. That is, she recognized me, but she no longer knew my name or that I was her son. I have noted in several of my posts that Kate is beginning to forget the names of our children, but she still knows them when she sees them. At this point, it is only the names that are slipping. The same is true for me. Sometimes she forgets my name, but she still knows I am her husband.

What I am learning from The Dementia Handbook makes a lot of sense in terms of my own observation of Kate. In most ways, she usually appears perfectly normal to anyone we meet in short-term interactions like those that occur at Panera, Barnes & Noble, or any of the restaurants we frequent.

She retains the ability to greet people, to express interest in them, or to offer encouragement. For example, at lunch today our server was telling us about her week. Her car died.  She has no transportation. She is a single mother who works full-time as a server while going to school. I told her I couldn’t imagine how she was able to deal with all that. She said she sometimes just goes into the bathroom, breaks down, and cries. Kate immediately spoke words of encouragement and suggested that it was good to “get it all out,” and she did so with a tone of voice that communicated her sincerity.

On numerous occasions, she has approached house cleaning staff in hotels or similar personnel in restaurants and expressed appreciation for keeping the place so clean. A year ago this past Christmas, her cousin, Sharon, took us to lunch at her country club. As we left, Kate thanked a member of the clean up crew. Sharon was amazed at Kate’s sensitivity. I am also mindful of the fact that at the time of her diagnosis, we were told that she would retain her greatest strengths the longest. Her social skills and a caring heart are among those.

I will never know all the things that have made Kate’s experience with Alzheimer’s so much better than that of many others. I do believe, however, Cornish has it right when she suggests that the best way to care for a person with dementia is to recognize that she is unable to do many of the things that depend on memory but that other abilities remain in tact for quite a while. The best treatment is to minimize the situations demanding memory and maximize those that capitalize on the person’s experiential skills. I believe that is what we have done. Rather than remaining at home most of the time which is the easy thing to do, we are out and about a good portion of the day including the dinner hour. I started eating out for all our meals as a way that Kate and I could focus on each other more than we might have done if I prepared meals at home and then cleaned up the dishes afterward. I didn’t realize how critical this would be to both of us from a social standpoint. I plan to keep it up as long as it is feasible.

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What a Nice Day

At the end of my previous post I said that I thought it would be another good day. Of course, I didn’t really know, but all the indications were good. I am glad to report that everything went well. We left Panera for lunch about 11:30, and then returned home for about 45 minutes.

I had scheduled a rare staff meeting at my office at 1:30. Since our sitter is in New York today, I invited Kate along and told her she could work on her iPad in my office during our meeting. Our current staff consists of three people who have been with me over thirty years, and it’s been a good while since Kate had seen them. I was surprised that she didn’t ask me to help her remember their names during our drive to the office. Perhaps she hadn’t remembered where we were going, just that we were going out. I believe that is true most of the time we go places.

When we got there, we must have had 20-30 minutes of social time. After all, I only see them briefly when I stop by on my way to Rotary each week. I was glad to see that Kate very quickly got into a conversation with two of them while I was chatting with another. In a few minutes, we were all in a general conversation and enjoying ourselves. I saw Kate participate comfortably in a way that I don’t often see. I would say she was handling the situation remarkably well. Once again, I thought how fortunate it is that she has retained this gift of sociability even when her memory is gone.

The surprise came when I decided to start the meeting. I told Kate that she was welcome to join us but that she could also go to my office and work on her iPad. She decided to stay. She even spoke a little, especially at the end when she was very complimentary about these three who have been with me for so long. It pleased me no end.

When the meeting was over and we started down the stairs, she said, “Where am I?” At first, I said, “Knoxville.” She said, “No, I know that.” Then I explained that we were at my office. How interesting that she could talk so comfortably with the staff and praise them for their ability to run the show and then immediately wonder where she was. This is just one more mystery. One thing was clear to me. She had enjoyed herself and handled herself beautifully. I left feeling really good.

From the office, we went directly to Barnes & Noble where we stayed two and a half hours before going to dinner. It was unusual, but today we didn’t see a single person we know. Kate didn’t take a break during the entire time we were there. She might have stayed longer if I hadn’t said it was time for dinner.
We had a good dinner and have spent a quiet evening together. She is now in bed, and I will join her in a few minutes. It’s been another good day.

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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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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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Reflecting on Kate’s Social Isolation

Much is written about the social isolation faced by people with dementia and their caregivers. Isolation has had a significant impact on Kate. Until her diagnosis, she was a very active volunteer librarian at our church. She took this position after working  as a librarian/media specialist with the Knoxville schools. She derived much satisfaction working at the church. Even though she was a volunteer, she spent a lot of time there and developed a good relationship with the staff. She was included in their staff meetings and social activities. She often went to lunch with several of the staff on a regular basis.

In addition to the staff, she also got to know a lot of the church members and their children. Sunday school teachers often came to her for resources for their classes. If she didn’t have anything in the church library, she would find the appropriate material elsewhere and get it to the teacher. She developed a strong collection of books and media for children. As our church has a lot of young married couples, we added lots of children. Parents brought their children to the library. Kate loves children and cultivated relationships with them. She offered story time for children in Sunday school and in our weekly day school. Kate’s volunteer work at church became a central focus of her life. She only gave it up when she recognized the symptoms of Alzheimer’s made it difficult to manage her responsibilities the way she wanted.

After her resignation, I invited her to join the Sunday school class that I was teaching. She tried it periodically but never fully engaged. We had a lot of class discussion. I think she found it too difficult to follow.

Beside the church, she had two other important social connections. One of those was her very close friend, Ellen Seacrest. Gordon and Ellen had been good friends since the early 1970s. Our children grew up together, and we spent a lot of time together socially. They were the couple with whom we celebrated New Year’s Eve many years. After leaving her volunteer position at church, the relationship between Kate and Ellen grew stronger. Then after Gordon died in 2013, they became even closer friends. Except for Kate’s brother and his wife, Ellen is still the only person she has told about her Alzheimer’s. Two and a half years ago, Ellen had a stroke while visiting her daughter in Nashville. She was in the hospital followed by rehab. Several months passed before she moved into assisted living in Nashville. Although we visit her almost monthly, it is not the same as having her in town. In addition, Ellen’s speech was affected by the stroke, and it is very difficult to understand what she is saying.

I should add that Kate has had three other close relationships since we have lived in Knoxville. One of those died quite a few years ago. Another, Ann Davis, moved out of state for a number of years. She and her husband now live in Nashville. We often stop to see them when we are there to visit Ellen. The third close friend moved to Arkansas following her marriage after the death of her previous husband with whom we were also close friends.

There is one other social connection that was important to Kate but is now broken. That’s PEO. She had been involved with them for more years than I remember, At one time she was their chapter’s President. She frequently hosted meetings in our home and was occasionally in charge of the program. She was never close friends with any individual members, but she enjoyed and respected the members and valued PEO’s mission. She was especially supportive of PEO’s grants and scholarship program for women to attend college. Over time Kate’s memory of the members began to fade. That was especially true since they only meet once a month. The result was that she no longer felt comfortable going to meetings. For a while, I encouraged her to go, and she agreed to do so. Eventually, I sensed that when she was with other members, the conversation didn’t involve her as much. She didn’t know who was talking or grasp what they were saying. She simply couldn’t keep up. One time when I reminded her of her next meeting, she told me she had resigned and wasn’t going anymore. I never pushed her after that. I spoke with one of the past president’s who had been sending me all communications since Kate did not read her email. I informed her that I thought it best if Kate resigned. She suggested that she simply go on inactive status. I agreed to that. We still pay her annual dues as well as making a contribution to their annual fund drive, but Kate is no longer involved.

This is a sad story. Kate, who had had several very strong social connections, now found herself without a close friend in Knoxville. I know that she is not the only person with Alzheimer’s who has faced this problem. It can be hard to avoid and requires some initiative and creativity. The good news is I have found ways to address her isolation. I’ll say more about that later.

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Another nice day

We’ve had another nice day. There isn’t much to report. We spent an hour or so at Panera this morning. Then Kate wanted to go to Lowe’s to see what plants they might have at this time of year. They were almost completely depleted. She did buy $50 worth of pansies that she plans to plant tomorrow

On the way to Lowe’s she asked me if I had said something to Sylvia about our moving to Texas. I didn’t know who she was talking about and asked if she meant Sylvia Bailey, our daughter’s mother-in-law. It turns out Kate was talking about our decorator whom we had seen at Panera while we were there. Kate noticed how puzzled I was and said, “Never mind.” I didn’t say anything more. It was as if she suddenly realized that she may have imagined this conversation. As I have noted in earlier posts, this is something that occurs periodically.

We had a couple of nice social encounters yesterday and today. The first was at Panera’s where we had lunch yesterday. A Rotary friend came in for lunch just as we were finishing up. He sat down beside us. That led to a conversation that lasted a little more than an hour. He is a funny guy and as a native Tennessean and former news broadcaster, he knows a lot of things that are happening around the state. Kate did not participate much, but she really enjoyed listening to the two of us.

The second experience was tonight at dinner at our favorite Mexican restaurant where I always speak Spanish with the servers. I engaged in conversation with one of them about how it seems like such a short time since we were there just before Christmas a year ago. After we finished the conversation, Kate said something like, “I would have married you just to hear a conversation like that.” She went on to explain that it was such a natural conversation between two people from such different worlds with no sense of any distance between us at all. I try to tell my friends that we don’t eat out just for food. It is an opportunity for significant social encounters. This is often the case.

I just remembered something else that occurred yesterday. We were driving to dinner when I said, “I haven’t seen Mark in a while. I think I will call him for coffee tomorrow afternoon.” She replied in a soft voice, “What am I going to do?” I felt so sad for her. She has such a strong need for activity other than what I am providing. It is so difficult to accomplish. I have mentioned to virtually everybody who asks about her that she is socially isolated. Several people have indicated a desire to help and would enjoy getting together. Only three people have actually responded. Two of them got together with Kate and me for lunch with no follow up. The third got together with the two of us twice. I believe she is likely to follow up again, but she is a school teacher and has obligations during the school year. I really do understand. All of us seem to be so busy that we can’t work in many extras like visiting someone who may be in need.

Last night on the way back from dinner, she looked at the clock in the car to see that it was only 6:00 p.m. Then she said, “What am I going to do?” She went on to say she can’t just work puzzles all the time which is what she is doing. This is so painful to me as I am working so hard to keep her active, but my efforts are never enough.

Last week I also mentioned Kate’s isolation to our associate pastor for congregational care. I asked her about others in the congregation who might want to establish a connection. I also left a phone message for Don Crawford whose wife has AD. I saw him at church on Sunday, and he asked me to call back. I would love for Kate and his wife, Cynthia, to get together. I am going to be hopeful.