Posted on

My Thoughts on Giving Advice

In two recent posts, I discussed some of the many reasons that Kate and I have lived well while “Living with Alzheimer’s.” Many of them were unrelated to anything specific we have intentionally done. Some of them, however, were deliberate choices we made that turned out to be very beneficial. As a result, some people might think I would jump at the chance to give advice to others, but such is not the case. Let me explain.

Long before Kate’s diagnosis, I learned that many caregivers are annoyed by the advice they receive from friends and family. That occurs most often because the person giving the advice doesn’t fully understand the situation of the person receiving it. There’s a saying that is common among the community of dementia caregivers. “If you’ve had one experience with dementia, you’ve had one experience with dementia.” The point is that each case of dementia has its own unique characteristics; therefore, what works in one situation may not work in another.

When people give advice, they usually believe that what worked for them will work for others. They do this without fully understanding that the circumstances of the person receiving the advice may be (and often is) quite different from their own.

My earliest personal encounter with this occurred after we brought Kate’s mother into our home with 24/7 in-home care. Kate was annoyed when an acquaintance periodically encouraged her to put her mother in a skilled nursing facility. That might have been a good suggestion for some people, but not for us. For a variety of reasons, we believed that in-home care was the best option for her mother and for us. I still believe that. Since then, I’ve heard other caregivers talk about their irritation with similar unwanted advice.

As a result, I try to avoid giving advice. There is one notable exception. That is based on what I learned from Judy Cornish, author of Dementia Handbook and Dementia with Dignity. Her approach to dementia caregiving emphasizes an important distinction between rational and intuitive thought. In her view, all is not lost with dementia. Although people with dementia lose their rational thought, they retain their intuitive thought which relies on direct experience with the world via our senses.

That means that even as memory declines, people with dementia can continue to enjoy many aspects of life. For Kate and me, that has involved music, movies, theater, dining out, and social connections. With Kate at late-stage Alzheimer’s, we can’t pursue these interests in the same way that we did during earlier stages. For example, she lost the ability to use her computer which allowed her to connect with family and friends and work on photobooks of family photos. She also lost her ability to use her iPad. She had used it to work jigsaw puzzles for hours a day. We gave up travel. We gave up eating out. As I often say, our world today is much smaller than it used to be, but we can still enjoy life and each other. That’s because we continue to find activities that she can appreciate via her intuitive thought. That includes music which has been an important source of entertainment throughout our marriage.

My primary advice to others who confront the diagnosis of dementia is to accept the fact that rational thinking will become weaker and weaker and focus on what loved ones with dementia can do and appreciate. When you think about it, most of the things we enjoy, whether we have dementia or not, relate to intuitive not rational thought. We don’t derive most of our pleasure from our knowledge of things like the names of current political figures or how to multiply or divide 1,396 by 3. Most of our pleasure comes from eating our favorite foods, listening to music, watching movies or TV, time with good friends, etc. A person with dementia can enjoy all of these things even years after their diagnosis.

I’d like to emphasize one other thing that people with dementia can appreciate via their intuitive thought, and that is LOVE. Love can play a role in lifting anyone’s spirits, but it can be especially helpful with people who have dementia. Their loss of rational thought can easily lead to a lower sense of self-worth. People respond differently to them because they are often unsure of what to do or say. The result is that people with dementia are often ignored, and their sense of self-worth is weakened.

For that reason, I believe caregivers should do everything they can to make sure their loved ones know that they are loved – that they matter. This is easier said than done. Caregivers often find themselves so occupied by routine responsibilities of caregiving (that their own rational thought tells them are important) that they overlook the most important thing they can do – making loved ones feel they are loved.

One reason I feel comfortable giving this advice is that it does not require that other caregivers do the same things that Kate and I have done. When we decided to enjoy life and each other for as long as we were able, we looked to things that had always given us pleasure – music, movies, theater, eating out, travel, and time with friends and family. We were lucky that both of us enjoyed all of these things. That doesn’t happen with every couple, but I do hope that other couples and families might be able to find their own ways to enjoy life and each other. It is certainly worth trying.

Posted on

Care for the Caregiver

In my recent posts, I’ve mentioned a number of reasons Kate and I have been able to live well while “Living with Alzheimer’s.” One that I overlooked is how much support I have received as a caregiver. I find that people are especially sensitive to the load carried by dementia caregivers and their need for help.

Three years after Kate’s diagnosis, I acknowledged her Alzheimer’s publicly. Since then, I’ve received an abundance of support from family, friends, and strangers. Everywhere I go people ask how we are doing and listen with interest as I tell them. Sometimes, people do something special to brighten our/my day. On several occasions when Kate was able to get out, a stranger bought our lunch. One couple (who are far from strangers anymore) buys my lunch almost every time they see me. That’s about twice a month. Only recently, have they let me buy their lunch occasionally. This same couple has given us several books. One contains all of Norman Rockwell’s paintings from the Saturday Evening Post. They have also given Kate several nice pieces of jewelry that the husband had given to his wife over their 61-year marriage.

This past week I received two very special gifts from friends. Coincidentally, each was a night out at a symphony concert. The first was from someone Kate and I have known for about fifty years. Our daughters are “Best Friends Forever.” She has a grandson who plays trumpet with the University Symphony Orchestra, and she invited me to join her and her family for dinner and the Symphony’s final concert of the season last Thursday. They performed Carmina Burana which I had not seen before. I hadn’t left Kate at night for more than two years, but I arranged for a caregiver to stay with her.  It was a great night out with friends, and the performance was outstanding. It was the first time I had attended a live performance in four or five years.

The second gift was this past Saturday night. Kate and I have had season tickets for our local symphony since the mid-eighties. As her Alzheimer’s progressed, we stopped attending but started giving our seats to friends. That was about five years ago. Our neighbor in the apartment next door was aware of my love for our local symphony and that I had once served on their board. Although she has a season subscription of her own, she had offered several times to stay with Kate so that I could go. Each time I declined.

Two months before the symphony’s last concert this past weekend, she once again offered to stay with Kate. This time she was a little more assertive and asked me to pick one of the remaining concerts, and she would stay with Kate. As it turned out, I had already been thinking about attending the final concert of the year. The orchestra was performing Mahler’s Symphony No. 1. It is one of my favorite symphonies. In addition, Kate and I were sponsoring the performance. I really wanted to go, but the caregiver I would like most to have stayed with Kate works for us eight hours a day Monday through Friday. I didn’t want to ask her to pull an extra shift on the weekend. It can be difficult to find help these days, so I was in a quandary about what to do. Our neighbor’s offer was timely, and I accepted it quickly. I’m so glad I did.  It was a wonderful night out. The concert was great, and I got to see quite a few people I hadn’t seen in years.

These two nights out were very special, and I am grateful for the kindness of friends like these and so many others that have helped us live well while “Living with Alzheimer’s.”

Posted on

Selfcare (With a Lot of Help From Others)

Despite the challenges and low moments while “Living with Alzheimer’s,” I’m upbeat most of the time. That is only because I have lots of help. Most of that involves my contact with other people. I have remained as socially active as I could since Kate’s diagnosis eleven and a half years ago. Since our move to a retirement community a little over a year ago that has increased. The activities of the past ten days are a good example.

I’ve always been a creature of habit and have a routine for each day of the week. Most of those involve engagement with other people. That begins on Monday with my weekly Rotary lunch. I’ve been a member since 1983, and it’s good to connect with people I have known for quite a few years. I also eat out (outside the grounds of our retirement community) for lunch on three other days of the week. Every Tuesday and Sunday, I eat lunch at two different restaurants at which Kate and I ate regularly for eight or nine years before the pandemic in March 2020. Since she has been unable to get out, I go alone; however, I know the managers and staff, and I am usually served by the person who has served us/me for years. Since our move, I have found a new spot for my Saturday lunch. As a regular, I’ve gotten acquainted with the owner, my server, and a few others who work in the kitchen.

The other three days of the week I have lunch in the café downstairs in our building. It’s a very friendly community. We’ve lived here just over a year, and I’ve eaten alone fewer than five times. On the way in, I usually see someone who is already seated and join them for lunch. If I start out alone, someone joins me.

Some days I find myself in more conversation than expected. One of those occurred last Thursday. In advance, I had invited a couple to join me. We were seated only a few minutes when someone else asked to join us. When we finished, I went down to the main dining room to return a cloth napkin that Kate had brought back to the apartment the night before. As I entered, I saw another couple who had just been seated for their lunch. They asked me to join them. When I told them I had just eaten, they said, “Why don’t you have a cup of coffee with us?” I accepted their invitation. We spent the next hour in conversation.

Every afternoon at 3:30, the caregiver and I take Kate to another café on the grounds for ice cream. The seating is beside the main hallway that links all the buildings, eating venues, meeting rooms, a gift shop, and a hair salon. We spend an hour there and have conversations with residents and staff as they go from one place to another. I think this is good for Kate and know it’s good for me.

At 4:30, we go directly from having ice cream to dinner. That’s yet another time for social contact. That begins with the staff since there aren’t that many other residents who eat as early as we do. Everyone on the staff knows all of the residents. They treat us very well. During any given meal, we may have as many as 5-10 different staff drop by our table to say hello and often chat for a few minutes. As other residents arrive, some of them stop by our table. As we leave, we stop at several tables to do the same for others who arrived after we did.

That’s the daily routine, but there are also many other impromptu encounters. This past Sunday, the server had just brought my coffee when a couple I know was seated at a nearby table. They asked me to join them as they have done on a couple of other occasions. It had been a while since I had seen them, so I accepted. All three of us are big talkers, and we spent the next hour and a half talking and eating.

There are always other unanticipated events that keep me going. Two of those occurred during the past two weeks. One of those involved a new caregiver. She replaced one who was quite good with the basic CNA (Certified Nurse Assistant) skills but not so good with “Tender Loving Care.” Our new caregiver is adequate with the basic skills and very good with TLC. The second day she was with us I walked into the living room where Kate was looking at the caregiver and smiling. They were holding hands. That never happened with the previous caregiver. I was elated.

As you would expect, how Kate is feeling has the greatest impact on how I feel. Her Alzheimer’s, Covid, and stroke have left her less upbeat than she was before. She rarely says a word until mid-afternoon; however, some days she is more cheerful than others. She’s had a number of days like that during the past two weeks.

I shouldn’t close without mentioning the support I get from those who read this blog as well as my followers on Twitter. You have often given me words of encouragement at moments when I needed them most.

It is true that I am not as active in the local community as I used to be, and I don’t participate in many of the events on the grounds of our retirement community. Nevertheless, the things I outlined above boost my spirits considerably. I’m living well and grateful for that. I know of many caregivers who are not so fortunate.

Posted on

An Unusual Visit with Ellen

Sunday’s visit with our longtime friend Ellen Seacrest was different from those in the past. I’ve always expected that the declines in Ellen’s vascular dementia and Kate’s Alzheimer’s would ultimately change the nature of our visits. To a large extent it has, especially Ellen’s loss of speech. We can only understand a small portion of what she says. Our latest visit, however, was affected by our arriving at a time when the residents had gathered together for a program put on by a dance group from a local church.

Ellen was already seated in the middle of group. One of the staff helped to seat us next to her. We didn’t get to talk much before the program began. The pleasure Kate experienced came from the afternoon activities. The dancing was followed by ice cream that the dancers dished up and delivered to each of us in the audience.

We had only a thirty-minute break to talk with Ellen, but being in the middle of the audience made it challenging to talk with her. Several others around us joined in. In some ways that was helpful since we can’t understand Ellen; however, it also meant that we didn’t get to focus our attention on her the way we have in the past.

We had a big surprise when Ellen told us about someone she wanted us to meet. We couldn’t understand all that she said, but she was enthusiastic about him. In a little while, she rolled away in her wheelchair to greet a man. Then I began to understand. She had found herself a boyfriend. She called to us and told us his name is Mike, but we didn’t get up and go over to them because we were in the middle of the crowd, and the “Music Lady” was about to begin her music program. One of the staff told us that Ellen and Mike had established a relationship, but Mike’s wife hadn’t yet been informed. I know this is not unusual in memory care of skilled nursing facilities, but I hadn’t thought much about Ellen’s establishing such a relationship. I think that is because I felt that most of the residents are significantly further along in their dementia than Ellen. Mike, however, is a new addition. He was among the few not in a wheelchair and did not appear to be much different than Ellen.

We enjoyed the music for about forty-five minutes before we departed. Kate thoroughly enjoyed herself, but I regretted not having more time with Ellen.

Kate was talkative on the way home, especially during the latter part of the trip. She expressed her appreciation to me for caring for her. We talked about things we had in common that had made our relationship strong. For that reason, I was somewhat surprised when we got out of the car for dinner. She said, “I want you to know that I think we will get married sometime.”

Most of the time when she doesn’t know my name or our relationship, I am not very surprised. I realize these moments of recognition come and go all the time. The nature of our conversation and, more specifically, her own comments about our relationship made it seem like it was one of those times when she clearly recognized me as her husband. Of course, it is quite possible her recognition of our relationship was coming and going all the way home. That’s another thing I will never know.

Each time we have these out-of-town trips, I am sensitive for any signs that suggest its time to discontinue them. Nothing happened on this trip that would prevent our going back again. Kate and I had a good dining experience on Saturday night and Sunday for lunch. She also enjoyed the dancing, ice cream, and music even if she didn’t get much of a visit with Ellen. Considering everything, the trip was clearly worth it. We’ll be back.

Posted on

Reflecting on Visits with Out-of-Town Friends

This past Saturday Kate and I went to Nashville to visit our longtime friends, the Greeleys. It was a visit very much like recent ones we have had with two other couples who are also longtime friends. All three were good visits for me, but they presented a challenge for Kate. I had exchanged emails with each couple prior to the visit. I told them that she is sensitive about being excluded from our conversations. All of us were interested in seeing that she was a part of the group.

In practice, that is very hard to do. We have a long history of conversations, and we fall back on the way we have always interacted. We would have to devote all our effort to make Kate an integral part of the conversation. This is not a problem that is the fault of our friends. I get caught up in the conversation myself and am the biggest talker of them all.

There is no problem when it is just Kate and me. We are able to converse easily. That involves a significant amount of repetition and a narrower range of topics. It would be hard for a group to spend a visit of two or more hours doing that. Eventually we would be back to where we are now, three of us involved in a conversation while Kate sits and tries to listen but can’t follow.

When I face a situation like this, I like to think of the things that are within my control and those that are not. One of the things I can’t control is Kate’s Alzheimer’s. She is on a course that will eventually prevent her from participating at all. We may be approaching that now. I never really thought about this issue before being faced with it. If I had, I probably would have expected a transition in which her ability to participate and her desire to be part of the conversation declined at the same time. That is not happening. I shouldn’t be surprised. She can neither remember things from the past nor learn new things, but she still wants to remember and learn. I am reminded of what I have heard so many times in the past, “Well, at least she doesn’t know.” Well into Stage 7, Kate clearly does know that something is wrong with her. But still she wants to remember, to learn, and to converse like everyone else. This is frustrating and sometimes frightening for her.

As for what is under my control, I would say my options are limited. I could avoid having these visits. That is something I don’t want or intend to do unless the problem is more serious than it is now. I could also make a few suggestions to our friends about things that Kate can appreciate. One thing that comes to mind is beauty. Everyone has artwork, flowering plants, or other items of aesthetic value they have collected over the years. Kate might take an interest in those. Her tastes now are very simple. She still loves the paper doilies she brings back from one of the restaurants we visit every week. She loves children. She might enjoy looking at photos of friends’ children or grandchildren.

There is also something else that I plan to consider. I could withdraw from the conversation periodically. That would leave the conversation to Kate and our friends. That combined with the knowledge of things that might appeal to her could be just enough to help Kate enjoy herself. Right now, I haven’t decided what to do. We don’t have any other visits scheduled and won’t for a while. My inclination, however, is to make a last attempt to include her in some way. If that doesn’t work, I will accept that the time has come when it isn’t possible for Kate to be as much a part of the conversation as I had wanted. That’s what I’ve had to do with her loss of memory and her ability to take care of herself. Alzheimer’s requires caregivers to accept a lot of things that we cannot change.

Posted on

Visiting Friends

I have talked a lot about the role that music and eating out have played in our lives, but I haven’t said as much about our connection with friends. I am thinking especially of friends who live out of town. With one exception, our friend Ellen who is in memory care in Nashville, Kate and I don’t see them frequently, but they, too, have provided with a support network that continues to be important to us. Saturday, we visited Ann and Jeff Davis, a couple we first met in graduate school at the University of Wisconsin. Later, John and I were colleagues at the University of Tennessee. They moved away more than twenty years ago and now live in Nashville.

Kate has changed a lot since we last saw them, and I was glad when Ann sent an email asking if we might plan a visit. Kate’s memory of them has diminished, but I thought she would probably respond well to them once we were together. For the most part, I was right about that.

After taking our seats, we quickly broke into two different conversations, one between Ann and Kate, the other between Jess and me. It sounded like Kate was doing well though I recall her dodging a question she couldn’t answer by tossing it to me.

We were there a couple of hours. The conversation soon drifted to one among the four of us. That can be, and was, hard for Kate. She wanted to be involved, but that is difficult. Her poor memory means her vocabulary is substantially reduced and she doesn’t remember the past and is not familiar with current events. That’s makes it tough. She didn’t, however, say anything that made me think she was uncomfortable. That’s good.

As I look to the future, I am hopeful that we will continue with these trips. Right now we have another one scheduled to see Jan and Scott Greeley in Nashville two weeks from now. That’s another special connection for Kate. Her parents were close friends of Scott’s parents. Kate and Scott were crib mates in the early days of their lives. She no longer retains a memory of their times together, but she almost always beams when I mention a visit with them. At this time in our lives, relationships like these are especially meaningful.  We have shared a lot of experiences together, and I plan to keep them up unless it becomes uncomfortable for Kate.

Posted on

Our Visit with Ellen

Yesterday’s visit with Ellen was different than usual. As I think about it, the last few visits have been a bit different. I looked back and know that I made a similar comment in September. Both Ellen and Kate are changing. I have come to accept that I can’t predict Kate’s behavior as well as I used to. It is only natural that our visits will also be unpredictable.

Ellen lives in a facility dedicated to memory care and is divided into three “neighborhoods,” each with about twelve residents. They are free to move about from one neighborhood to another during the day but not outside the facility itself which is locked. We usually find her sitting in her wheelchair near the lounge with a television or in the dining area. Last time and again yesterday, she wasn’t in either place or her room. We asked one of the staff if they had seen her. She left to find her. In a few minutes, she returned with Ellen. Although she has been in memory care for two years, she has always recognized us. This time she was unusually excited to see us.

We pulled her up to a table and took our seats. We had only talked a few minutes when she tried to tell us something that we couldn’t understand. I finally understood that she wanted to go back where she had been. It seemed very urgent. We offered to take her, but she wanted us to wait and said, “Back in twenty minutes.” After she was gone, I looked over at the staff member who had brought her to us and explained that she wanted to do something in the other neighborhood. She offered to go get her, but we told her we knew our way around and would find her.

A few minutes later, we found Ellen in her wheelchair beside another staff member who was on the phone. Ellen seemed eager to talk with her. The three of us chatted while the staff member continued her conversation. We were able to gather that Ellen thinks the world of this person but never learned why she wanted to see her so much right then. When she got off the phone, she told us she needed to tend to something else. The three of us headed back to Ellen’s neighborhood.

On the way, Ellen appeared to be looking for someone. I think it may have been the staff member she wanted to see before. As we passed by the clinic, Ellen stopped and opened the door and looked in. Two or three staff members were there, and the one Ellen was looking for came out. She nicely explained that she had to take care of something and walked away. At the same time, I saw that someone else was delivering ice cream to each neighborhood for their afternoon treat.

We went back to Ellen’s neighborhood and sat together at a table where all three of enjoyed our treat. We talked a little while before Kate looked at Ellen and said, “We’re going to have to leave now. Then a visitor we had seen on one other occasion stopped by and introduced himself. There was a woman with him whom I assumed was the person he was visiting. That began a lively conversation, at least between Kate and the man and the woman and me.

When we finished, Kate looked at me and said, “I want to go home.” I knew it was time. We had been there an hour and twenty minutes. That was probably our shortest. We are usually there close to two hours. We recently went over that time when the music lady was there. We were all enjoying the group singing and dancing.

The drive home was not pleasant. It rained all the way, and the traffic was heavy. As sunset approached, it seemed unusually dark. The traffic was moving at seventy or more when a message popped up on the dash, “Passenger Seat Belt Unbuckled.” I looked over to see that Kate disconnected it and was letting it ease back into its stored position. I told her she needed to put it on. She didn’t know what to do. I explained that I couldn’t drive and help her. She asked me where it goes. I put my hand on the connector and touched her leg to show her. She still didn’t know what to do. I pulled onto the shoulder and got her fastened, and we were off again. We were back in town by 5:30 and stopped at Panera for quick bite. I was glad to be off the road and home.

I don’t intend to stop our visits to see Ellen, but the challenges are increasing. Except for the initial greeting, I’m not sure Ellen enjoyed it that much although she didn’t want us to leave. I’m going to keep an open mind about the future.

Posted on

A Visit with Friends

In my previous post, I commented on what I might call my “Care Team” (professionals, friends, family) and my “Arsenal” (my personal resources I can use as needed). I didn’t specifically mention our visits with out-of-town friends. We have a number of them in the Nashville area whom we have known since our undergraduate and graduate school days. It’s not a great distance from Knoxville, and we have gotten together periodically for years. We have continued to do so since Kate’s diagnosis.

Angie and Tom Robinson are among that group and were in town this past Saturday. We joined them for lunch and afterwards at our home. Prior to each visit, I always wonder how Kate will respond. In the past, everything has gone well. Over time they have been able to pick up on some of Kate’s changes, but not nearly to the degree they did this time. Of course, they were not with us long enough to get the full picture, but they saw far more than in the past. I think they would say that for the first time they could really see her as a person with Alzheimer’s.

The annual Christmas parade had just ended, and a weekly market on Main Street was still underway. That meant we couldn’t park as close to the restaurant as I had wanted. As we walked from the car to restaurant, Kate was bothered by the cold and wind. When something bothers her, she wants it eliminated immediately. The walk didn’t allow for that. She complained about the weather in a way that expressed more irritation than she would have done before Alzheimer’s.

They got to see some of her confusion with respect to ordering and remembering what I had ordered for her. The good news is that she was perfectly at ease with both Angie and Tom. In an email, Angie told me that Kate had asked her to “help me not to do anything stupid.” That is something she often says to me. Angie also said that Kate put her hand on hers several times. In addition, they got to see her confusion regarding her drinks. Kate asked her several times if she could drink her tea and water.

When we finished our meal, I went back to the car and found a parking place in front of the restaurant. While I was gone, Angie said they had a good conversation with Kate “and her responses were pretty good.” It was another good illustration of her ability to respond to people she has known in the past although their names and the things we have done together are long forgotten. As long as she is able to do that, I am optimistic our visits will continue for a good while.

Posted on

More Restroom Issues and Our Visit with Ellen

I am glad to report that I was able to get Kate up with sufficient time to arrive at Maggiano’s fifteen minutes before our noon reservation. I want to say in passing that Kate did not want to get up but was in a cooperative mood and got up with a little urging. After going to the bathroom and starting to get dressed, she wanted to lie down again. She seemed quite tired, and I gave her a few minutes to relax.

Before arriving at the restaurant, I decided to use the valet. Previously, we have found parking easily at that time of day, but it is getting to be more trouble for Kate to walk. In the past, I tried to give her this opportunity to walk because she needed it. At this stage, my priority has shifted. Now I am influenced more by Kate’s convenience than her need for exercise. That worked well yesterday, and I will use it next time we are there.

Our meal went well. We had an appealing server, and the manager whom we have met on previous occasions dropped by our table to speak. Ellen’s memory care facility is located about forty minutes from there. I suggested that it would be good for both of us to use the restroom before leaving. As we arrived at the door of the women’s room, a lady was coming out and told me no one else was in there. I walked in with Kate and took her to the stall. Then I went to the men’s room and returned to wait for her just outside the door. In a couple of minutes, a woman came out and asked if my wife was inside. I told her she was. She told me it sounded like she may have been having some trouble and that no one else was in there. I went in to check on her. She was still in the stall. She said she was all right and was just coming out. She wasn’t sure how to open the door that she had locked with the latch. I was able to poke my finger between the door and the side of the stall. That enabled me to show and tell her how to lift the latch. That went smoothly.

She came out and I was about to walk out when she said, “Don’t leave me.” She looked a little panicked as though I were forsaking her. I remained with her and helped her dry her hands and arms. This may seem like a little thing, but when she washes her hands or brushes her teeth, she almost always washes her arms and, sometimes, her face. In the process she can get pretty wet.

We finished up and left the restroom before anyone else came in. Then we made our way to see Ellen. She was sleeping in her wheelchair in front of a football game on TV along with several other residents. She awoke quickly and was glad to see us.

The visit went well, but it was different that those in the past. During the past year and a half her speech has declined significantly. We could understand very little of what she said. We only picked up snatches here and there. Once in a while, she would say something in a short complete sentence. Then we wouldn’t understand anything that followed.

Ellen may have recognized the problem as well. I know she wanted to move around more than in the past. Previously, we have stayed either in her room or one of the other public spaces. This time we started out in the activities room. It wasn’t too long before she wanted to go to the main open area between five or six resident rooms on one side and an equal number on the other. From there we went back to her room. Then she wanted to go around the entire interior of the facility that consists of two other “neighborhoods” identical in design to the one in which she lives. She is wheelchair bound, and this may be her way of “walking around” the way other residents in memory care walk “around and around.” We ended up at the table where she eats her meals. It was about forty-five minutes before dinner, but she wasn’t the only resident who had taken a seat early.

Just before we left, another resident in a walker stopped by and told us she was having a bad day. She mentioned several things that had happened to her that day including losing her purse. I doubt if any of these things happened, but Kate and I sympathized with her. She seemed to appreciate that and said so when we left. We had another conversation with a resident as we entered. We had seen her on a few of our previous visits.

We were there almost two hours and around a lot of other residents as well. Sometimes I am concerned about how Kate is responding to being in a memory care facility. She could easily qualify to be in memory herself. Does she ever think about this? I don’t think so. I haven’t seen the slightest indication that she sees herself like any of the residents. Does she even understand that all the residents she sees have some form of dementia? Again, I think not. I doubt that she has a grasp of what dementia is. She knows she has problems, but I believe she still sees herself as normal. When Kate was at an earlier stage, I avoided taking her with me to visit friends in memory care. Now I don’t think she processes much about the nature of the facility itself or the residents who live there.

Despite the restroom incident, the day had gone well. Nothing happened that would make me think we should stop coming to see Ellen. I say that even though Kate can’t remember who Ellen is before we get there. While we are there, she seems to sense the connection. That, and the fact, that Ellen clearly remembers us is enough for me to continue our visits though I know we are approaching the end.

Posted on

Visits with Nashville Friends

The recognition that Kate is now entering the last stage of her Alzheimer’s motivates me to do what I can to maintain our longstanding friendships with out-of-town friends. With that in mind, Saturday we drove to Nashville to visit Ann and Jeff Davis. Our past visit had been a good one, and I was eager to see how this one would go. Although she didn’t remember them before our arrival, Kate accepted the fact that we were going to see them without any reluctance at all. A couple of times on the way (and after I had mentioned our visit again) she did ask me to remind her of who they were. She was never straight on that.

As on our previous trip, she was immediately taken with the flowers outside. Ann saw us and came out to greet us. Our greeting was as natural as ever. I think Kate felt completely at ease. We went to their sun room where we enjoyed catching up with them. Since our last visit, they had taken a Danube River cruise and also made a trip to Mexico for a Spanish immersion course. Our conversation was lively, and the two hours we spent with them went quickly.

Kate was less talkative this time. Some of that may have been because the rest of us talked so much. I know she could not have followed everything we said. Throughout our visit, I was concerned that she was uncomfortable. It was a surprise when we got in the car to hear her say she had enjoyed the visit. She didn’t say anything that would have given me the idea that she was ignored or bored.

My own reading of the situation is that she was confused by our conversation and may have been uncomfortable. She chose to remove herself from it, an easy way to adapt to a challenging situation. I suspect this is something that I am more likely to see in the future. It reminds me of my mom when she and dad were with us in any group. She was very quiet.

Our visit does make me think about ways that I could have brought Kate into the conversation. Much of our conversation related to our past experiences, something that is impossible for her to handle. She does, however, retain her feelings. She could talk about her feelings for her family, especially her family. She also retains a strong sense of social justice and the fact so many people live in underprivileged conditions. These are things that are easy for the two of us to discuss. It seems like it might be more contrived in a typical social get together like the one on Saturday. I am going to think about creative ways in which I might encourage at least some conversation on topics that we could all appreciate.

Staying overnight in Nashville has worked out well for us. We had a nice dinner the night before, and Kate was able to sleep late before our going to lunch and then visiting our friend Ellen at her memory care facility. Our visits with her continue to be challenging. We understood very little of what she said. In addition, her memory is also declining. Her daughter told me to ask about Ellen’s visit from her son’s family the previous weekend. They live out of state and don’t get to visit very often. When I asked, Ellen didn’t remember their coming at all.

A few weeks ago, we saw a woman from the church where Ellen directed the choir for forty years. She told us about several videos of her daughter singing solos with the choir. She had posted on YouTube. I played them for Ellen. That was a treat for her and for us.

For the third time in a row, we were there for the “music lady” who comes to the facility about twice a month. She plays the piano and sings and invites audience participation. The residents love her. I can see why. Kate and I enjoy her as well. Kate seemed a little more controlled in her expression of enthusiasm than the first time we were there, but she danced and sang a little as well as clapping her hands and swinging her arms with the music. She was enjoying herself so much that we stayed thirty minutes longer than I intended.

I feel good that we can still have weekends with visits like this at this point in our journey and plan to keep going as long as we can.