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.

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.

From Nashville

Yesterday afternoon Kate and I drove to Nashville for a visit with our friend, Ellen Seacrest, who is in memory care following a stroke four years ago this past August. Except when she has been in the hospital or rehab, we have visited her approximately every 4-6 months. As her condition and Kate’s have declined over that time, I have been mindful that we may reach a point when it no longer seems best for us to continue.

Thus far, I haven’t felt that the visits would end soon, but the visits over the past year have brought about a few changes. Ellen’s ability to speak has declined very significantly. We can only understand about 10% of what she says though she seems to understand us. Music has been an important part of Ellen’s life. In the early part of her career, she was a music teacher. She also served as a church choir director for forty years, started a children’s choir in Knoxville and led it for 15-20 years as well as being actively involved with the musical community. That led me to think about entertaining her by playing YouTube videos of a wide variety of musical performances. That worked well for a while, but we are doing that less now. Ellen seems to tire when passively watching the videos for any length of time.

One might think that a primary reason for reducing or ending our visits would be a direct result of Ellen’s and Kate’s abilities to benefit from these visits. That is clearly a possibility. When we began, they remembered each other without a problem. Ellen still seems to remember us without any difficulty, but Kate’s memory of Ellen has faded significantly. I have had to explain who she is for over a year, maybe two. Once they are together, however, Kate responds with some recognition even if she might not recall Ellen’s name or the experiences they shared for so many years. In this respect, it is like her memory of me. Her not recognizing me by name or relationship is quite common, but, with very few exceptions, she has a sense of closeness and a good feeling about me.

It’s not Kate’s memory or Ellen’s inability to speak that I see as the principle factors that might end or reduce our visits. Before they become issues, I believe we are going to be affected most by the difficulty of traveling. When we started, it wasn’t challenging. It was a relatively simple day trip. We left Knoxville in the morning and returned later that afternoon or evening. When Kate started sleeping later, we left later and got home later at night.

I adapted to that by leaving after lunch and arriving in Nashville late in the afternoon, having a nice dinner, and staying overnight in a hotel. That allowed Kate to sleep late on Sunday as well. Then we could have lunch and go directly to see Ellen. Our visits have been ending about 3:30 or 4:00. That allowed us to get back to Knoxville at a decent hour. We have followed this routine the past six to eight months, and it has worked well.

Our experience this time causes me to think again about future visits. The past few weeks I have felt the effects of the increased responsibilities I have for Kate. That coupled with some of the routine demands of the holiday season have kept me busy. I found that packing for the trip was more challenging. I had more things to think about and was simply more rushed than usual.

On top of that getting Kate in and out of the car and into a restaurant is not as easy as before. That was complicated this time by the weather. She is very sensitive to many things, and that includes the weather. We devote a good bit of time getting her coat and gloves on and off. We have lost lots of gloves in the past, and I have been working hard to keep them in her coat pockets when she isn’t wearing them. Even putting on gloves  is not as simple now. I have found the best way is for me to pick one of the gloves and hold it out in the exact position it should be in to put on the appropriate hand. I am zipping and unzipping her coat now as well.

Her sensitivity is not limited to the weather. When we arrived, I had arranged for a “mobile key.” When the system works, it is a nice feature. We don’t have to check in at the front desk. We go directly to our room. This was our third or fourth time to use it. We have had a problem each time. On our previous visit, we got to our room and found that the door wouldn’t open. I called the front desk, and they sent someone with a regular key that worked fine.

After our previous experiences, I still wanted to try again. I didn’t receive the key at all, so I stopped by the front desk and got a regular key. I didn’t think at all about Kate’s reaction to this. These problems have never affected her before. Not so this time. As we walked to the elevator, she complained about the hotel. That changed her mood and influenced her whole impression of the room. She wanted to know what we could do. I told her I had brought a couple of books that we might read (Charlotte’s Web and The Velveteen Rabbit), or her “Big Sister” photo book, or she could work puzzles on her iPad. She wasn’t interested. She just wanted to “get out of here.”

I suggested that we go downstairs, get something to drink, and go through her photo book. That’s what we did. We went to the restaurant and sat at a table where I could pull up a chair beside her. That worked fine except for one problem. There were a couple of young men at the shuffleboard table. She was frightened by the noise of the pucks. We moved to a table that was as far away as we could get. That helped some, and we spent about forty-five minutes looking at the album. She enjoyed it; however, it wasn’t the same reaction she usually has. Several things accounted for that – her mood, her difficulty seeing, and the noise from the shuffleboard table.

I suggested we go back to the room and get ready for dinner. We had a nice dinner. She got along well. When we walked in the hotel, she immediately commented on how nice it was. This is one of the good things one might associate with not having a memory. She was tired and worked a few minutes on her iPad before retiring for the night.

At 2:30 this morning, she woke and needed to go to the bathroom. When we returned to bed, she asked about “him” and “the baby.” I didn’t understand at first, but she said a few things that gave me a clue. These included “Did the baby come yet?” I told her it had. She asked if it was a “she” or a “he.” I told her it was a she. She was excited and added it wouldn’t have made a difference if I had said, “he.” She asked where he was. I assumed she meant the father and told her he was at the hospital. She asked when we could see the baby. I told her “tomorrow.” She wanted to know why we couldn’t see her today. I said, “It will be today, but since it was still the middle of the night, I said tomorrow.” We repeated this conversation multiple times for the next forty-five minutes or an hour. Periodically, I told her I thought the best thing we could do was go to sleep. She finally did. Until 5:00, that is. She wanted to go to the bathroom again. The baby did not come up this time. Instead she was focused on where we were and why. That lasted only a short time before we were both asleep again.

I got up just before 7:00. After I dressed, she woke up. This time I suggested she go to the bathroom. She went but was very confused. She told me she was “so glad you are here with me.” When I got her back to bed, she went to sleep rather quickly and is still sleeping at 10:00. If she doesn’t wake up sooner, I will get her up around 10:45 for lunch before going to see Ellen.

To be sure, Kate is just as confused at home. That alone would not cause me to end our visits, but there are added complications when we are out of town. I’ll be watching more closely to the way things go the next couple of trips and hope we can continue longer. I say that not only for my desire for us to stay in touch with Ellen but also because it has implications for our visits to other friends who live here as well.

Thinking about Travel

Following all our trips, I consider whether or not we are likely to take others in the future. I am glad to say that our overnight trip to Nashville this past weekend went well. I think Kate should be able to continue this kind of trip a while longer. The key is not the travel itself. It seems like the distance is not a problem for her. I believe it involves the type of situations in which we find ourselves that is more relevant.

For the most part, the kind of things we did were very similar to those we experience at home. Kate wasn’t under any additional pressure. We arrived at our hotel on Saturday with enough time for her to rest about an hour before going to dinner. The restaurant was right behind the hotel. We could easily walk the short distance. We went early, 5:30, and were back in our room by 7:15. It was a pleasant evening. Kate was tired and relaxed in bed while I watched the LSU/Alabama football game.

Kate was able to take it easy Sunday morning. She was awake for about thirty minutes around 10:00. I turned on the TV and watched “Meet the Press.” I woke her at 11:00 to get ready for lunch. She didn’t want to get up, but I was able to use the excuse that we needed to check out of our room. That worked, and we arrived for lunch at 11:45.

We ate at Maggiano’s which is less than a five-minute drive from our hotel. I used valet parking at the mall where the restaurant is located. I did the same thing last time and found that much better for Kate. She can’t remember the restaurant by name or even recognize that we have been here for lunch during each of our last four or five visits, but I like to think she has a comfort level being there. The manager remembers us and always drops by our table to greet us.

From there we drove to see Ellen and were there a full two hours. Although she appeared to have declined a little since our previous visit with her, the visit went well. We arrived in Knoxville around six and stopped at Panera for a quick bite to eat before going home. A couple from our church came in shortly after our food was ready. We invited them to sit with us. We had a nice visit with them and then went home.

The weekend had gone well. It was an easy one for Kate. That is the way these visits to see Ellen usually go. I think we will continue to visit her for a while longer but recognize that both Kate and Ellen are declining. I suspect that when our visits end it won’t be a result of the challenges of travel but their respective health issues that are the cause.

“On the Road Again”

“Real” travel is a thing of the past for Kate and me, but we occasionally take one-nighters. I am writing from Nashville where we will visit our friend, Ellen, this afternoon. She has been in memory care for almost two years. We have visited her about every 4-6 weeks since here stroke four years ago this past August except for a couple of times when she was in the hospital or rehab. Sometimes we also visit with other friends who live here. We’re just visiting Ellen on this trip. As we have done for the past 6-8 months, we stayed in a hotel overnight. That makes it a little easier than going and coming in one day. Besides that, we have a nice meal at one of several restaurants we like. It makes a nice change from our regular routine.

We got off to a good start when Kate woke up early. After a trip to the bathroom, she took a shower and returned to bed. I let her rest until 11:30 when I got her up for lunch. We had a relaxed lunch at Bluefish before leaving town and had an especially good time. Kate said something that led into a discussion about religion. It wasn’t a deep discussion, but she talked about the contribution that make religion makes in support of programs designed to help others.

We had an unusually good time at dinner. We ate at a very nice Italian restaurant. I am grateful that we can still have experiences like this. At some point, I suspect we will discontinue eating out. In the meantime, we both enjoy it and living as normal a life as we can at this stage. I gave out two of my Alzheimer’s cards, one to the hostess who seated us and another to our server.

There were only a few things that might have given clues to her diagnosis. The first was getting to our table and getting seated. She performs both tasks with great care. That’s because she is unsure of what to do. We had to go up one step to the area where our table was located. That adds an extra challenge for her. Getting into her seat presents two problems. One is knowing which chair is hers. That happens even though I pull out the chair, stand there to help her, and tell her “This is your chair.” That seems a simple thing but not to a person with dementia.  The other issue is getting into the chair. She is as cautious with that as going up and down steps.

Along with our bread, we were served a bowl of white beans in olive oil. She prefers butter with her bread, but she asked about the beans. I put a few on her bread plate. She started eating them with her fingers. She liked them. She took the bowl and used the spoon that came with them to eat them as she would a bowl of soup.

The manager stopped by our table near the end of our meal. Kate told him “We come here a lot and really liked the meal.” He looked at her a bit strangely. I suspect he wondered why he didn’t remember her. The answer was clear. This was only the second time we have had dinner there. The first time would have been almost a year ago. We have eaten there for lunch, but that would have been more than five years ago.

Kate went to bed early but not to sleep. She has been up twice this morning to go to the bathroom, once at 5:00 and once at 8:00. She is sleeping soundly as I write this post. I’ll get her up in time to make our noon reservations for lunch. We should be at Ellen’s by 2:00 and head back to Knoxville around 4:00.

For years, I left Kate for a short time to eat breakfast in the dining room or area. I remember preparing signs with large lettering telling her where I was and that I would return soon. I gave that up about a year ago when I no longer felt comfortable leaving here for even a short period of time. Now I just order breakfast from room service. It’s not quite the same, but I like to eat right after getting up. Kate likes to sleep later. With room service we both get what we want though I much prefer breakfast in the dining room to our dark hotel room. Like so many other things, this is something with which I can adapt.

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.

A Few Thoughts on Restrooms and Travel

I am writing this morning in our hotel room in Nashville. We came up yesterday afternoon to visit with our friend, Ellen, who had a stroke four years ago while visiting her daughter who lives here. Ellen has never returned to Knoxville and is now in memory care. She and Kate were best friends at the time of the stroke.

We cut out international travel in 2015. We made what I believe is our last trip to our children’s homes (Memphis and Lubbock) for Thanksgiving and Christmas last year. But we have continued day trips to Nashville and have recently made them overnight trips. That has been much easier because it is so difficult to get away early in the morning. I consider it a nice treat as well. Sometimes we meet other friends who live in the area on Saturday afternoon. We have a nice dinner and get to bed at a decent hour that night. Then we visit Ellen right after lunch on Sunday afternoon. We usually stay with her an hour or two and get back home in time for dinner.

Each time we make a trip, I reflect on how travel is going and wonder how long we will be able to keep it up. So far, I have been optimistic about continuing. With the changes that Kate is making, I am becoming more doubtful. I’m not sure at all, but I have the impression that other couples in our situation don’t generally continue to travel as long as we have. Travel can be very disorienting and disturbing to the person with dementia. In addition, the logistics place a greater demand on caregivers. It’s enough to get ready for one person. Packing for two is a greater challenge. When one person has dementia, the issues double.

Yesterday we had lunch in Knoxville before leaving. Each of us went to the restroom at the restaurant. As always, I walked Kate to the door of the ladies’ room. I opened the door and looked around to see if anyone else was in there and to identify the stall that Kate should use. I pointed it out to her, but that wasn’t enough. I had to walk her to the stall and direct her to the toilet. Then I stood outside the door in case she might need me. When she didn’t come out in what I thought was a reasonable length of time, I opened the door. She got a look of relief when she saw me. She couldn’t explain to me what had happened. My guess is that she didn’t see the door to exit the restroom and didn’t know where I was. This would not have been the first time this has happened. Usually, however, she calls for me. She might have done that this time, but I probably opened the door earlier than I have done on other occasions. What I do know is that it was a frightening experience for her. It was a little thing and forgotten quickly, but in that moment, she was really scared. It reminds me of being in a house of mirrors when I was a child. I was frightened. It seems to me that Kate, without a memory or the rational ability to deal with the situation, would be even more frightened. It was another reminder of what a security blanket I am to her. She generally doesn’t know what to do in a situation, but she counts on my knowing for her.

The drive to Nashville was an easy one. We relaxed at the hotel about an hour before going to dinner. We had a pleasant dinner and a good night’s sleep.
Kate was up at 5:00 this morning to go to the bathroom. We were back in bed by 5:30, but I don’t think either one of us was asleep again before 6:00 or shortly thereafter. I got up at 7:00, dressed, ordered and ate breakfast in the room, and checked email. I have lunch reservations at noon but hope that I will be able to get Kate up early enough to get there by 11:30. That would allow a more leisurely lunch before our visit with Ellen.

As I think about it, I don’t believe overnight trips like this are any more stressful for Kate than being at home. Yesterday’s incident in the restroom was in Knoxville before the trip. That is an issue that will have increasing implications whether we are home or on the road. I also find that she is confused about where she is when we are in a hotel, but that, too, is something that regularly happens when we are home. If we were to discontinue our trips, it would probably relate to the extra challenges for me. I don’t believe we are there just yet, but we may be getting closer. In the meantime, I am also trying to be more sensitive to how she feels when we travel. If I sense that she experiences anything more discomforting than being at home, that will be a clear indication that it is time to stop.

Sunday in Nashville

We had a nice day in Nashville yesterday. I had made noon reservations for lunch at Maggiano’s near our hotel, but we got there at 11:15 because Kate woke up earlier than I expected. I always like it when she wakes up on her own. That means I don’t have to be concerned about waking her and the challenges that sometimes presents.

We had a good meal and a pleasant time. The last time we were there it was Father’s Day and a little noisy. It was much quieter yesterday and very relaxing.

Before leaving, Kate went to the restroom. I took the opportunity to go to the men’s room rather than waiting outside the ladies room. Moments after I went in, I heard her call me. When I opened the door I saw her looking around for me. She expressed a big sigh of relief when she saw me. I felt bad about not being there as she walked out, but she came out so quickly. She could not have used the toilet. I suspect she got confused and just turned around and came out.

As we left the restaurant, Kate saw a poster with a photo of Frank Sinatra. She stopped to look and naturally asked me who it was. We had been to this restaurant several times before, and neither of us had noticed it. I chuckled because she always asks who he is in posters on the wall at Andriana’s when we are there. She said something to the hostess who told her that Sinatra died some time ago. Kate said, “He did. I didn’t know that.”

Our visit with Ellen went well although understanding her is a big problem. She hadn’t declined since last time, but it is hard to have a good conversation when you can only understand about 10% of what she says. I relied on YouTube videos that she and we enjoyed until Emily, the music lady, arrived to entertain the residents in Ellen’s “neighborhood.”

As we gathered around the piano, one of the staff dropped something that made loud noise at the nurse’s station. Kate is getting increasingly sensitive about surprises, especially sudden noises. She responded audibly that was almost as loud as the noise that frightened her. One of the residents spoke up quickly and told Kate that she had the same problem.

Remembering how Kate had sung, danced, and cheered last month made me eager to see how she would react to the music. She did enjoy the music and sang along rather quietly but was never tempted to do any of the things she did last time. I guess she was just in a different mood. She was more like herself than the previous visit.

Later as we drove to Knoxville, I told Kate we were close and would stop for dinner before going home. She said, “I don’t have any money.” I told her I had money. She said, “I will pay you back when we get home.” When I parked the car at Andriana’s, she again told me that she didn’t have any money. I told her that was all right. It was all “our” money. She said, “I guess that’s right.” She quickly forgot, however. As we walked from the car to the restaurant, she told me she didn’t have any money. I told her I would pay. She said she would pay me back. One other time she mentioned it while eating. This was something unusual. I don’t ever recall her saying this before.  Of course, it fits if she thought I was a friend instead of her husband. It would still be the first time she has raised a question of her paying for anything when we are together. On quite a few occasions, she has been concerned about not having money when I leave her with a sitter. In those cases, I have always told her that I left money or a card with the sitter.

While we were waiting for our meal, she asked our server if she knew her name. The server said, Yes, it’s Kate.” Then Kate asked the server’s name. This was shortly after the server had introduced herself since she sensed that Kate had not recognized her. The server said something about “your husband,” and Kate said, “We’re friends.” I said, “Very good friends.” Kate said, “Yes.” All of our servers know about Kate’s Alzheimer’s, but this particular server has had the opportunity to observe her memory problems more than any other. I don’t think it’s because Kate is more comfortable with her. I believe it is just a chance occurrence.

I mentioned earlier that Kate had taken interest in a poster of Frank Sinatra when we had lunch at Maggiano’s. At dinner, she may have set a record for the number of times she said, “Who is that?” while looking at a poster of him at Andriana’s. I didn’t count, but I am sure it was well over ten times, some in rapid succession.

When we got home, she started going through two of the guest rooms. She acted as though we were moving, and she needed to decide what to take with us. She went into a guest room and picked up a couple of things. I suggested we relax a while and that she could work on that tomorrow. She agreed.

When we got to the bedroom, she asked what she should do. I told her she could start by taking the pills I had put on her bedside table. It looked like she was going to do it but started to undress for bed. It seemed like she was just randomly selecting what to do although she was asking me to tell her. She didn’t seem to follow any of my instructions after asking for them.

While I was brushing my teeth, she called to me and said, “Where is he?” I asked who she was talking about. She said, “You know.” I told her I really didn’t and that she and I were the only ones in the house. She was puzzled but didn’t pursue it further.

She went to bed almost an hour before I did. When I got in bed, she was still awake. We talked about having had a nice day and that we have many nice days. That led to a comment or two about our marriage. Then she said, “We are able to talk to each other. We’re able to be really honest with each other.” Then she suggested something I never fully understood. She talked about how our relationship could grow even further by talking with other people about it. I said, “Do you mean a counselor?” She said, “That could be, but I was just thinking about people we know.” At first, it sounded to me as though she thought we had a problem we needed to work through. The more the more she talked the more it sounded like just improving on the relationship we already have. I don’t know how long she talked, but she sounded very thoughtful as she considered the benefits of exploring ways of enhancing our relationship.

This conversation and a couple of others we have had recently has impressed me with her rational ability to think through something like this. Sometimes she says that I underestimate how smart she is. She may be right.

Another Overnight Trip

These days it is quite unusual for us to travel two weekends in a row, but that is what we have done. We are currently in a hotel in Nashville where we visited yesterday afternoon with a longtime TCU friend and former housemate of mine. It had been a while since we saw him last, but we have communicated by phone, text, and email. He met us at the hotel.

It was a good visit. Of course, Kate couldn’t remember him, but when I told her he was a friend from TCU, her eyes lit up. She participated in the conversation and enjoyed herself as she has done on several other out-of-town visits with people she had never met or not remembered. Although she needs to ask people to repeat and explain themselves, I take it as a good sign that she is interested. Yesterday’s experience reinforces my belief that she is heavily influenced by the situations in which she encounters people. She does better in small groups, only one or two others besides us, and in situations where there are minimal distractions. Large groups like those at a reception are intimidating for her. Our music nights at Casa Bella are typically an exception, but that is because we are often at a table with only one other couple. It was very quiet in the hotel yesterday afternoon. That was great for conversation.

Travel is no longer something special for Kate. After checking into our room, she was ready to go home. She does still enjoy specific experiences while we were away. For example, she loves the flowers around the hotel. As we walked to and from dinner, she stopped multiple times to admire their beauty. When we got back after dinner, she mentioned going home. When I told her we were staying overnight, she frowned.

What she doesn’t realize is that I have only chosen to stay overnight so that she can sleep late on the day we leave and the next morning before we visit Ellen. It makes the trip much more leisurely and enables us to have a nice dinner out as well. I’m trying to make a special occasion out of it, but it is working better for me than for her.

We will go to lunch after checking out and then visit Kate’s friend Ellen at her memory care facility. Last time we visited, we joined the residents in a music program that Kate enjoyed. The woman in charge said she is coming periodically on Sundays. I hope she is there today.

Our Weekend Trip to Nashville

Kate and I don’t travel much any more, but we did make an overnight trip to Nashville this past weekend. I have pretty much ruled out trips of anything more than a couple of days, so I’m glad to say that this one went well. We had a nice dinner at McCormick and Schmick’s after leaving the Davises. Kate turned in early while I watched the Texas Tech/Michigan State game.

When Kate woke up Sunday morning, she looked over at me at the desk where I was working on my laptop. I got up from my chair and walked toward her. She said, “Richard?” I said, “Yes, did you think I was someone else?” She said, “I was hoping it was you.” I said, “That must have been scary if you thought I might be someone else.” She said, “Not really scary, but . . .” She couldn’t think of the words to say what it was like, but she was definitely relieved to know it was me. This is just one more occasion when I try to imagine what it is like to wake up and not have any idea of where you are. Even though this happens to her at home, I feel sure there is a certain amount of comfort in being in “familiar” surroundings. Being in a hotel doesn’t offer that.

From there we went to brunch at Maggiano’s. When we checked in at the hostess stand, the managing partner was standing there. I don’t know what he said, but he and Kate got into a brief exchange in which each was kidding the other. I had a difficult time getting her away to follow the hostess to our table. It was one of those times that I pulled out one of my Alzheimer’s cards. Shortly after we were seated, the manager came to our table and thanked me. He said he had an aunt with dementia, and something Kate had said made him think she might as well.

Kate had brought a TCU magazine with her. He noticed that and said that he had worked in several restaurants in Texas. He and Kate connected once again. She enjoyed hearing him talk about her home state, especially since he had enjoyed his time there. Our server was very helpful with the menus that included both brunch and regular menu items. She was also very attentive. We were off to a good start. About mid-way through our meal, an assistant manager dropped by to check on us. We had a good conversation with her. When she left, she dropped a card for a free dessert. We took advantage of the offer and had an enormous piece of flowerless chocolate cake.

After eating, we were off to Ellen’s memory care facility. We had another good visit with her. We chatted for about an hour before turning to YouTube for music. This time we viewed segments from several Andre Rieu concerts. Once again, music played an important role in our visit. That is becoming more important as her ability to talk continues to decline though not too much since last time.

It was a successful trip. I will consider making Nashville an overnight trip in the future – at least as long as it works for Kate. Seeing friends in the afternoon, having a nice dinner that night, brunching at Maggiano’s, and visiting Ellen makes for a nice weekend.