Posted on

Two Surprises Yesterday. One for Me, and One for Kate

Yesterday was another good one for Kate and me. She was up a little earlier than usual, and we spent almost two hours at Panera before having our customary lunch at Bluefish Grill. After lunch, I asked her if she would like to go directly home or stop by Barnes & Noble. I was pleasantly surprised when she said she wanted to go home. I say that because she hasn’t wanted to spend much time at home recently. It turned out that she was tired and wanted to rest a while.

After resting for almost two hours, she told me she was going outside to “pull leaves.” Again, I was surprised and very pleased. It has been weeks since she has worked outside. That is something that used to occupy most of her time during the day. More recently, the winter weather, our having the flu, and the fact that there are barely any remaining leaves on our shrubs has kept her inside. That hasn’t last long before she was ready to get out to Panera or Barnes & Noble. I had begun to wonder if, not when, she would pick up her yard work again. She was outside for a full hour before coming in. She was happy. As I have said before, working in the yard is her therapy.

The second surprise, this one for Kate, came next. She received a phone call from Meg Wright, a very close personal friend from Texas. She and I had exchanged emails a couple of days before to work out a good time for a call. When I mentioned to Kate that Meg was calling, she immediately recognized the name but asked, “Where do I know her from?” I told her they were old friends from Fort Worth and that she had been one of her bridesmaids in our wedding. She remembered that. I also conveyed to Meg that Kate would be weak on remembering any details of their past as she is with our children and grandchildren. I suggested that Meg might mention some of the old memories and that would help her remember.

As I expected, the phone call went very well. It wasn’t a long call, perhaps twenty minutes, but the impact was as great as if it had been an hour. By last night, I am sure she had forgotten all about the call, but it had been a moment of pleasure with a very dear friend from her past. Once again, she had had a very good day, and so had I.

Posted on

Why I Say We are Fortunate

I have frequently said that compared to many couples living with Alzheimer’s, Kate and I have been very fortunate. My Friday with Kate reminds me why I feel that way. As we left for lunch, I said something she didn’t like. She snapped back at me. Then she quickly said, “I’m sorry. I shouldn’t have said that.” While this doesn’t happen every time she is irritated with me, it does occur with some frequency. That makes it much easier for me to deal with such moments than if she never apologized or recognized what she had done.

Then at Applebee’s, she asked me to tell her my name. I said, “Why don’t you tell me my name?” Then she said, “I’m serious.” She obviously was, and I said, “Richard.” Then she said, “Creighton.” I asked what city she lived in. She hesitated a moment and said, “Fort Worth?” I reminded her we live in Knoxville and had lived here almost 47 years.

When we have these little exchanges, I interpret them as a sign of trust that she can be open with me about her failing memory. I suspect that is something that may gradually include other people. I got a hint of that when Larry was with us this week. I don’t recall exactly what she said, but it was an indication of having trouble remembering things.

After ordering, Kate asked me the server’s name as she does every time we eat there. I told her. She said, “Oh, I know that. I’ve asked you that before.” In this case, she had asked me only a few minutes earlier. Then she said, “You are so patient with me.”

She is right, but I was struck by her saying so. That shows she remembers certain kinds of things when there are so many other she can’t remember. This is a kind of memory that is much deeper than remembering my name. It’s a connection that requires a recognition of one’s personal qualities or characteristics. Like her earlier apology, it makes it easier for me to accept other things that she does.

These experiences also illustrate something about our relationship that has made life easier than it is for some other couples. We are both conflict avoiders. Like other couples, we have had conflicts. They have never led to anything but a cooling off period and a later conversation about whatever brought about the conflict. Since her diagnosis, Kate has definitely been more irritable. This has often happened when I felt the need to rush her to get ready to go out. It has also occurred when I have tried to help her when she has wanted to be more independent.

As she has become more accepting of my help, conflicts have lessened. The exceptions usually occur in the morning right after she has gotten ready for our morning visit to Panera. It takes her a while to be ready for conversation, and I am prone to rush that.

Some mornings when she meets me in the kitchen, I can tell quickly that she’s not in a good mood. My initial approach was humor. To some extent it seemed to work. She is not a natural kidder, but it prompted her to joke with me. She liked kidding me about my compulsiveness. Over time, she seemed to be more serious than before. That caused me to change my approach. I began to avoid saying anything that smacked of kidding her and to adopt a more loving response. I have found that I can re-direct her when she is not in a good mood by responding lovingly. This works. Sometimes she brushes it off, but most of the time she comes around rather quickly. We are fortunate to be able to work so well together. I hope it continues.

Posted on

More Musical Moments

During the early days of our courtship and throughout our marriage music has played a significant role in our lives. It has been especially important to me. You might say it has been a form of therapy for me since Kate’s diagnosis. I keep music going almost all the time we are at home. Kate has loved live musical performances but she has only periodically expressed much appreciation for my recorded music. It appears that may be changing.

On the way home from lunch, I played an album by the Susquehanna Chorale. I had heard them at Chautauqua and bought several of their CDs. The I played includes Danny Boy, Loch Lomand, Shenandoah, Swing Low, Sweet Chariot, and Deep River, among others. She has always like this CD, and I have played it a good bit in the car. This time she seemed to be especially moved. She expressed how beautiful it was and was a little teary.

When we got home, we sat in our family room listening to music while she worked jigsaw puzzles on her iPad, and I worked on a blog post. Shortly, she put down her iPad and just listened. She started to get teary and talking about how much she enjoyed the music. When that album ended, I played my favorite album of Puccini arias. She continued to listen and enjoy. Her reaction seemed to be in between just getting teary and crying. She was very touched in a way I hadn’t observed before

Yesterday, we had a similar experience. The added surprise this time was that she remained in the family room for a full two hours. It’s been a long time since I have seen her remain in one place for so long. During that time, I was playing some very soft peaceful music. It didn’t engender the teary reaction of the previous day, but she was quite relaxed as she worked on her iPad.

We topped off the day by going to Casa Bella for jazz night. It is always good, and last night was no exception. She is relatively quiet but enjoys the people with whom we sit, and, of course, the music is the highlight. I am hopeful that we will be able to continue attending these musical nights for a good while.

Posted on

Forgetting Family

Yesterday my brother, Larry, who lives in Birmingham dropped by on his way to his farm near Rogersville. This was the first time we had seen him in six months or more. For that reason, I was particularly interested in Kate’s memory of him. As she has done for other family members, she has asked me his name on several occasions. When he arrived, she didn’t get right up and greet him, but she did appear to recognize him. We had a nice conversation for a short while before leaving for the restaurant. As we walked out to the car, Kate pulled me aside and whispered, “Is he my brother?” I said, “He’s my brother, Larry.” We went on to the restaurant where we had a nice meal and good conversation. Nothing happened that would suggest that Kate’s memory was as poor as it is.

Before Larry left for his hotel last night, we decided to meet him at Panera this morning. As Kate and I left for Panera, I reminded her that we were meeting my brother. She said, “What’s his name?” I told her. Almost immediately, she asked again. I told her again. Then she repeated it several times. She works so hard to remember things, but her brain just won’t retain the information. I doubt that she remembers our having dinner together last night.

She got along fine this morning. The only obvious sign of her Alzheimer’s occurred when we were talking about young people and college. This related to Larry’s saying he had a number of friends whose children started in one college and changed to another. Kate indicated she had done that. Larry asked her where she had gone before TCU. She couldn’t remember. She said she thought it was someplace in Arkansas. It was really Oklahoma.

The visit with Larry is one of the few times that I was definitely aware that she was having difficulty remembering a family member. I don’t mean just forgetting a name. She has often done that with grandchildren. In this case, when she initially saw Larry she didn’t recognize him and thought he might be her brother, Ken. That suggests that she would probably have difficulty recognizing her brother as well. I had been considering another trip to Texas to see him knowing that could easily be her last trip back home. The experience with Larry encourages me to start making plans for a visit. Time is running out.

Posted on

An Emotional, but Uplifting, End to Our Day

After our visit to Barnes & Noble yesterday, we went directly to dinner and then home. Kate’s bathrobe and extra shoes were still in the car at her feet on the passenger side. As she was getting out of the car, she used her hand signals to ask if she should leave the robe in the car. I told her I thought it would be better to take the robe and the shoes in the house.

Once inside she asked me if she should put on her night clothes. I told her that would be fine, that she could just relax until time for bed. She surprised me by putting on a night gown, something she has not been doing lately.

As usual, I turned on the PBS Newshour that I record each night and took my seat. Meanwhile, Kate picked up her iPad and sat in her chair to work jigsaw puzzles. When the news was over, I decided to put in a DVD with excerpts of her father’s home movies shot between 1932 and the mid-1940s. I had gotten it out to play for Kate a couple of days before, but she asked that I wait until later.

The original movies were filmed in 16 mm color, but, because of their age, the quality of the images had deteriorated significantly over time. One of Kate’s cousins who owned a photo shop in Fort Worth edited the film to make a 35-minute VHS tape when they were the latest way to store images. Then he invited Kate’s mother and father to his house where they were joined by one of Kate’s aunts to view the tape. During the viewing, he used a tape recorder to capture the comments made by these family members watching the movies for the first time in a number of years. Later he created a new video on which he dubbed the audio recording. Two or three years ago, I had that VHS video transferred to a DVD. That is what I played for Kate last night.

The video immediately captured her attention. She dropped the iPad to her side and watched the entire video from beginning to end. She was enraptured with the audio as well as the video. The voices of her mother and father along with her aunt and cousin came through clearly. It was exciting to hear Kate’s reactions. The film begins with her mother and father before they were married, events surrounding their marriage in Michigan, and her mother’s college graduation from TCU. From there it moved to Kate’s grandmother’s home where all the children and grandchildren gathered for lunch every Sunday after church. That was before Kate’s birth, but she saw lots of her cousins playing around the yard outside the family home. Of course, it included her grandmother and her aunts and uncles.

The final portion of the video focuses on Kate’s arrival in 1941 followed by her brother, Ken, in 1943. Although both of us have seen these movies on multiple occasions in the past, it’s been a while. I suspect Kate’s memory of them was very blurred. We both took interest in seeing her as an infant in her parents’ arms, playing in her crib, and playing with Ken and her cousins.

At the end of the video, Kate was in tears of joy. She kept commenting on it. She thanked me profusely for having played it. I can’t ever recall a time when she was so overcome with emotion. It was especially surprising to observe that she didn’t forget having seen the video right away. She sobbed off and on for about 45 minutes. She was still moved when she went to bed. I joined her, and she then did a repeat of the previous night. She talked a long time before going to sleep. She expressed her feelings about our marriage, our children, my getting to know her family before so many of them passed away, and overall how very fortunate we have been.

As much as I also enjoyed seeing the video, the most memorable part of the evening was knowing how much it meant to Kate. Priceless.

Posted on

Is this going to become commonplace?

I have recently mentioned that Kate has taken different items of clothing with her when we have gone out. She hasn’t done that for a week or so, but that changed this afternoon. After enjoying sitting by the fire, working on her iPad, and listening to music for close to an hour and a half, Kate was ready to go somewhere. We are now at Barnes & Noble.

When we had gathered the things we wanted to take with us, I saw that Kate had her heavy red velour bathrobe and a pair of shoes in her hand. I didn’t say anything. I just waited to see if she planned to take them with her to the car. She did. I still didn’t say anything. As we started to get out of the car at Barnes & Noble, she used her normal hand signals to ask if she should take the robe and shoes in with her. It was then that I suggested that she leave them in the car. She accepted that without comment. I’ve added this to my growing list of unexplained mysteries.

Posted on

Simple Pleasures

Recently, I have connected with a number of other caregivers on Twitter. Most of them are authors who have written about their experiences as caregivers. Others are people who are working to educate the public about the variety of issues surrounding Alzheimer’s and other forms of dementia.

It has been especially encouraging for me to discover how many other caregivers are able to find moments of pleasure in the midst of the changes that are ongoing for the ones they care for. It is not that everything is rosy or that no one has experienced frustrations and other challenges. It’s that there are always moments of pleasure as well.

It’s almost 2:30 p.m., and Kate and I have faced both the good moments and more challenging ones today. Her good mood from the very beginning of this day is sufficient to make me say it’s been a good day, but there is much more for which we are both grateful. It’s a cool, rainy day, and we are sitting in front of the fireplace in our family room, something we both enjoy but don’t take advantage of very often. Of course, I have music playing in the background. She is working puzzles on her iPad while I write this entry for my blog. All is well right now, and I am confident the rest of the day will be the same.

At the same time, we have had a few moments I would have preferred not to have experienced. Even though she’s been in a good mood, she has gotten irritated with me a few times. One of those was when she thought I was taking too long to get ready for Panera this morning. When we got in the car, instead of saying something like, “Give me a break. I’ve been waiting two hours for you to get up,” I said, “I guess I do keep you waiting sometimes.” She responded in a very forgiving way and said, “You don’t keep me waiting very often.” Her irritation was over.

Twice at lunch she asked me “Where are we?” I told her Knoxville. The second time I added, “Would you like to guess what state?” She quickly said, “Tennessee” and added, “See, I’m smarter than you think I am.” It saddens me when I see her unable to easily identify where we are when we are not traveling. Just a few months ago, this would not have been a problem.

When I ordered a kale salad at lunch, our server told me they were out of kale. I ordered another salad and asked if I could have a serving of brisket with it. As she walked away, Kate said, “What was that all about?” She hadn’t been able to follow our very brief and simply conversation. When I see instances of her being confused over normal things like this, I have a greater appreciation of her inability to understand what is happening in movies or plays. She is able to enjoy musical theater and opera because of the music itself even if she doesn’t have any idea of the plot or who are the primary characters.
I know all too well that in the long run that many of life’s current pleasures will not provide the same enjoyment they do now. For now, we live in the moment and are grateful.

Posted on

Little Things

We’ve had a string of good days lately. I say that because Kate seems happy and has appeared to enjoy herself. It doesn’t mean there has been any lessening in the other symptoms of Alzheimer’s. Her memory only gets worse, and I observe new signs of confusion.

As we prepared to leave the restaurant after lunch the other day, she asked (using hand signals) if she should take her napkin with her. That is the first time I recall her ever asking that. She has frequently taken paper napkins. She has used them in the car to wipe the saliva from her mouth or to store in a basket in our garage (after she has torn them into smaller pieces). This time it was a cloth napkin. Perhaps I shouldn’t have been surprised. On several occasions, she has asked if she should take her glass with her. Two or three times she has actually taken her glass. In two instances I caught her and returned the glass. Another time, the owner of the restaurant saw her walk away with the glass and asked if we would like a “To Go” cup.

Later at dinner that night, she asked, “Are we in Fort Worth?” I told her we were in Knoxville. She said she thought she recognized the buildings across the street as buildings in Fort Worth.

When we got home, I turned on the TV to a recording of CBS Sunday Morning while she worked on her iPad. After a while, I told her I was going to take my shower. She had her robe in her hands, pointed to herself, and then pointed in the direction of the hallway to her room where she keeps her clothes. This is one of those situations in which I misinterpreted her hand signals. I thought she was going to her room to get a night gown. I said, “Yes,” and she left.

When I got out of the shower, I noticed that she wasn’t there. I just thought that she was taking a while to find something and would be back shortly. When she hadn’t come back in another ten minutes, I went to check on her. The first thing I noticed was that all the lights were out. That made me wonder if she had gone to bed in her room. That has happened before, but it had been a long time. I called her name, and she said, “I’m in here.” She was on the bed in the guest room next to our bedroom. It turned out that she thought I meant for her to go to bed in there. The only thing I could figure out was that when I thought she was asking if she should get a gown for bed, she was really asking if I wanted her to go to bed in the guest room.

I felt really bad about that. I know that she has become much more accepting of my suggestions about clothes that she wears. She also asks me what to do a lot more than in the past. In this case, I felt like the master who had sent her away to her room. I quickly explained that I never would suggest she sleep in another room without me. She said she would prefer to be with me, and I told her I always wanted her to be with me. This is just one more of those things I’ll never understand.

On a brighter note, last night she was lying in bed working on her iPad while I was reading in my chair. She became unusually talkative. She began by saying she was glad that we had married and that we had had a happy marriage. This is a conversation that we have a lot. We both reflect on the things for which we are grateful, especially for our marriage. She talked about our children and how proud she is of them. This led to her talking about her mother and how glad she was that we had kept her in our home for the last five and a half years of her life.

All of these are things we have talked about many times, but there were two things that stood out about this occasion. One is that she would stop and start to go back to her iPad. I took this as a signal that she was finished, but very shortly, she would continue the conversation. This must have happened three or four times before she really stopped. It made me feel that she was having a powerful sense of gratitude.

The second thing that stood out was her talking about her mother’s having stayed with us during the last years of her life. Although she was not detailed in her description of those days, she clearly had not lost her memory of our having kept her. I have discovered so many things about which she has absolutely no memory that I was thrilled to know she remembered this special time. Moments like these are precious.

Posted on

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.

Posted on

Trying to Figure Out Kate’s Sleeping Pattern

If you have been reading my recent posts, you may recall that I have commented on a change in Kate’s sleeping pattern over the past several weeks. She has been sleeping later than usual. I have had to waken her a couple of times around 10:00 or so to get someplace. Most of the time I simply let her sleep as long as she wants. One day she slept until 12:20. There have been several days she slept until 11:00 or after.

During this same time period, there have been a few days when she has gotten up early. One of those days was this morning. I was working in the kitchen when she walked in about 8:10. She was dressed and ready to go to Panera. Then I had to get ready, but we were there by 8:30. That is still earlier than our average arrival time before she started sleeping later.

I wondered how the morning would go since I knew she wouldn’t want to remain at Panera until lunch time. As it turned out, she was ready to leave by 9:30. She was tired and wanted to rest. She came inside and is still in bed at 10:25. I hope she will get up shortly so that I can get her lunch before I have to leave for Rotary. The sitter is scheduled to arrive at noon. If she is not awake before 11:00, I’ll get her up.

Over the seven years since her diagnosis, she has made a number of changes in her sleep habits. When first diagnosed, she wasn’t sleeping well at night. That led to her sleeping later in the morning. A little later she settled into a fairly regular sleep routine. I think we can thank Trazadone for that.

(At this point, Kate walked into the room. She was ready to return to Panera.)

We are now at Panera, she apparently had enough time to rest. This works out well for me because it also gives us plenty of time to get her a sandwich before we go back to the house to meet the sitter, and I leave for Rotary.

As I was saying, Kate got into a pretty regular sleep routine. She usually awoke fairly early (between 7:30 and 8:30). She got up, got some apple juice and yogurt, and returned to our bedroom where she worked jigsaw puzzles on her iPad. That continued for a long time until the past few months. She started getting up slightly later and getting dressed. After that, she was ready for Panera. That meant she was drinking less juice and eating less yogurt. A couple of weeks I had to throw out yogurt that had expired. I had already stockpiled a good bit of apple juice. Now I am only buying V8 for myself.

At first, I thought that the current change might be caused by our having the flu, but she has continued to sleep later, and it was well beyond the time we recovered. The problem that her sleeping later presents for me is that I spend less time with her in the morning. In addition, I sometimes have to rush her a bit for us to get lunch before the sitter arrives. I guess time will tell where this is going.