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The Sitter is Still Working Out.

In several posts in the past 2-3 weeks, I mentioned a concern that Kate was not as taken with having a sitter as she was during the first four months or so. Her reactions to the sitter during the past week have convinced me that something else must have been bothering her and not the sitter. During that rocky period, she didn’t express any of the same enthusiasm when the sitter arrived or respond with appreciation when she left. That seems to be over. The past few times the sitter has arrived she has treated her more like a friend.

Yesterday I was especially concerned about how she might react because she slept late. That presents a problem from me because I like to take her to get a sandwich before the sitter comes at noon, and I leave for my weekly Rotary meeting. I checked on her about 10:15. She was still in bed but was awake. I asked her if she would want to get up so that I could take her to lunch, or if she would prefer to remain in bed and let the sitter take her to lunch. She said she would rather go with me. I told her I would like that but that she would need to get up, and she did.

By the time she was ready to leave, I could see that she would never finish eating before the sitter came. I called the sitter and told her to meet us at Panera. I’ve done that on two other occasions. I feel a little uncomfortable about doing this because we are always together for lunch, and I feel like it is a little abrupt to get up and leave her with the sitter. Of course, this is my problem, not Kate’s. Yesterday, I was particularly sensitive about her response since she had expressed a preference for me to take her to lunch. I needn’t have worried. All three of us handled it very naturally. Kate didn’t seem to mind at all. I was relieved and left for Rotary. More importantly, she thanked the sitter as she left when I returned, the same as she did last week with another sitter. I think we are back to our routine. All is well.

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A Special Moment with a Dear Friend

Sometimes I wish I were a gifted writer. Now is one of those times. Bear with me as I try to explain why.

Kate and I have lots of good days, but yesterday was a day I would like to remember exactly as it happened. We got off to a good start. Kate was in a very good mood. She got up early enough that we could make our morning pilgrimage to Panera and then to lunch without having to rush. That worked out perfectly because I had arranged a trip to Nashville to see Ellen Seacrest, her closest long-term friend. She lived in Knoxville until suffering a stroke two and a half years ago. Since then she has spent time in rehab and two different assisted living facilities in Nashville. Following two seizures, she went back to assisted living but in the memory care section.

We have known Ellen and her husband, Gordon, since the early 70s when we lived in the same neighborhood in Knoxville. Our children grew up together and attended the same schools from pre-school through high school. We celebrated many special occasions with them including many New Year’s Eves. After Gordon’s death in 2013, Kate and Ellen spent much more time together. They lunched together. They shopped together. Ellen was unquestionably Kate’s closest friend. To this day, Ellen is the only person one than her brother, Ken, that Kate has told about her diagnosis.

When Ellen had a stroke in August 2015, Kate’s life changed dramatically. That left her with no close friends in Knoxville. I have not only played the role of husband but best friend as well, but it’s never really been the same. For a few months after Ellen’s stroke, we were unable to visit her but kept in touch through her daughter who lives in Nashville. As soon as she gave the word that Ellen was up for a visit, we went to see her. Since that time, I have tried to arrange a visit once a month. I wanted the two of them to maintain their relationship as well as they could.

While in Knoxville, Ellen was well-known in many circles. She is a musician who was employed by ETV as a program director and later TV producer. Her first program was a musical program for children. Many children grew up knowing her as the “Music Lady.” She was also a producer of many other ETV programs that did not involve music at all. Simultaneously, she was a very active member of her church and had directed the choir for almost 40 years before retiring a few years ago. She loved to entertain her friends, co-workers, and those she knew at church.

Try to imagine the impact of her having a stroke in Nashville and never returning home again. She was immediately removed from a host of people who could have been of great support to her during a very difficult time. The distance between Knoxville and Nashville as well as the ages of her best friends made it difficult for people to visit her. Besides us, I know of only one person and a couple who have visited her since she has been there. The visits of the others occurred only once. Ellen made a good recovery; however, her speech never returned to normal. That makes it challenging to carry on a conversation with her. That, too, may have discouraged others from seeing her.

We had the flu in late January. When we had fully recovered, I contacted Ellen’s daughter about our coming to see her. That is when we learned that Ellen had fallen breaking her hip, shoulder and elbow. Yesterday’s visit was our first in about seven weeks. She is still in rehab at a new place that is closer to her daughter who has been a devoted caregiver for her mother. She does this while holding down a challenging job with Bank of America and fulfilling her responsibilities as a single parent of two teenagers.

So we have two very close friends each of whom has experienced life-changing health issues, separated by geographical distance, and who haven’t seen each other since Ellen’s traumatic experience with her fall. Now they see each other for the first time in weeks.

I know Ellen’s daughter must have told her we were coming, but the look on her face suggested that she was floored that we had come to see her. Kate took her hand. They both had a teary moment as each expressed her pleasure in seeing the other. The sight of this reunion and what it meant to each of them caused my eyes to well up with tears as well.

About mid-way into our visit, I mentioned something about our not having attended the music club for a while. Ellen and Gordon had sponsored our membership years earlier. Then I told her about our having recently seen Tosca and La Boheme. That reminded me of Kate’s experience with music I had played for her this past week. I keep all my CDs on my phone and pulled it out of my pocket and played “Danny Boy”. That had been a special favorite of Ellen’s. When her son was about 10, he sang it at a piano recital at which he also played the piano. Once again, Kate’s eyes watered as did Ellen’s. I was teary myself. When it was over, I played “Shenandoah,” and “Swing Low Sweet Chariot.” We listened quietly as the music played. All of these are beautiful arrangements on an album by the Susquehanna Chorale. I knew they would be special for Ellen after her career in choral music. It was equally special for Kate. We will be back for other visits, but I suspect I will remember this particular for along time to come.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.