Since my post yesterday afternoon, I remembered one other recent change in Kate’s behavior. She has become unusually sensitive to the music played in many restaurants and also sudden noises. I’m not sure if this has anything to do with her Alzheimer’s, but it is a very noticeable change from the past. This is not brand new. She began to be bothered by these things several years ago after her diagnosis. The difference now is the degree of sensitivity. It doesn’t take her long when we are in a restaurant to comment on the type of music being played. Again, it’s not just that she doesn’t like it. It’s that she seems so annoyed by it, almost like the reaction that some people have to the scraping of fingernails on a chalk board. (Is that still a problem in this age of digital technology?) Similarly, when we were at Barnes & Noble yesterday, the woman who was fixing the drinks in the café bumped a ceramic dish with something. The noise wasn’t that loud, but it was audible throughout the café. Kate responded physically and audibly. Almost all the other tables were taken. No one else seemed to notice. A little later, I bumped my stainless steel coffee cup against the table. No one else around us even responded at all. Kate certainly did. On at least one occasion recently, a young woman dropped her keys on the floor. Kate jerked and made a noise. The woman apologized. It was nothing for the rest of us, just Kate.
A Brief Observation About Our Day
Before it ends, I want to say what a nice day we have had. Kate has been in a very good mood from the moment she got up. Except for her asking me people’s names, I could almost forget that she has Alzheimer’s. I’ll go to bed feeling good.
Noticing Lots of Things
Since starting this journal in 2011, I have not kept a regular schedule for my entries. I write when something catches my attention. As I have looked back to the early years, I notice that I didn’t write nearly as often. I think that’s because Kate wasn’t experiencing as many changes. Our lives weren’t significantly different than they were before the diagnosis. Now there are so many things occurring that I find it impossible for me to remember them all.
That has been particularly true over the past few months. While I don’t know what life will be like in the next six to twelve months, I do have a distinct impression that Kate is going through a transition period. The most prominent sign of that is her forgetting close family and friends. It also includes a failure to recognize where she is. A year ago, she had difficulty remembering where we were when we traveled to another city like Asheville or Fort Worth. Now she doesn’t remember where she is when we are right here in Knoxville. As we drove to Chalupas for dinner last night, she asked, “Does this city have a name?” When I told her, she said, “I know that. It just slipped my mind.” Unlike the early days, she didn’t sound very frustrated that she hadn’t remembered.
As we left the restaurant, she asked, “Where are we right now.” I told her again that we were in Knoxville. Then I mentioned that we had lived here 47 years and that was much longer than we had lived any other place. She said, “What’s the name again?” Once more I told her. She repeated the name several times. About a mile down the road, she asked me to tell her again.
It’s not just people and places she is having trouble with. On the way to lunch yesterday, I commented on the seeing the first blossoms of Lady Banks roses. She said, “You’re going to have to tell me the names of all of the flowers later when I am more awake.” I felt a touch of sadness hearing her say this. She has always loved these roses and the other flowering trees and plants are be beginning to come out. What a shame to see her lose these memories.
Although I said she doesn’t seem to express a high degree of frustration when these things happen, she often says things like, “I know you get tired of my asking you.” That let’s me know that she recognizes that she keeps asking the same questions. I keep giving her the same answer, “That’s what I am here for. I want you to ask as often as you want to. Remember I am your ‘MM.’” That is the nickname she gave to me some time ago. It stands for “My Memory.”
One of the other changes that I have noticed is that she is more sentimental than she used to be. In the last few weeks, I have seen her with tears in her eyes several times. This is a rather dramatic change from the past. She has never been one to cry. Since her diagnosis, two different types of situations have brought her to tears. At first, it was the panic attacks she had when I was trying to get her to hurry to get someplace. I quickly adapted by trying to avoid any time deadlines, when possible. On several occasions, when we might have to rush to get to a concert, I would simply choose not to attend. For quite a while, I have tried not to schedule anything in the morning. Now I have become more rigid. I don’t schedule anything before noon. I even changed the office we go to for her doctor’s appointments. Now we go to one on the other side of town so that she could have afternoon appointments.
Her recent tears have occurred when thinking of good things that have touched her. One of those is music. The other is her family. As her memory of other things began to fade, she talked a lot about her family. That was particularly common when we were with friends. I think that was because her memory made it difficult to remember everyday things like events in the news or other things that were happening with our friends. That interest in family continues but with a different twist. Now she talks with me about her parents and their families as well as our own immediate family.
Yesterday afternoon I mentioned something about a cousin of hers who recently passed away. That prompted her to reflect on her mother and father and then her aunts and uncles. Her father was one of eight children, so she had plenty of aunts and uncles. Six of them lived in Fort Worth where Kate grew up. Another lived a short distance away in Dallas. Only one lived out of state. That meant she had many childhood experiences with her larger family. As she talked, she got more sentimental. She kept saying, “That’s all I’m going to say.” A second later she would continue. Mostly she said the same things again. As she did, I could see the tears welling up in her eyes.
She seems to be working hard to hold on to what remains of her memory and her ability to handle life. One example is her asking me to tell her the names of people and friends. I can also tell that in moments when she has been quiet, she has been thinking of someone’s name. For example, yesterday in the car, she said, “Ken Franklin.” That is her brother. One other time she said her mother’s name. I asked if she had been trying to think of the name. She said, “I knew the name. It just wouldn’t come to me.”
She has always been careful to make up the bed every morning. She once told me that her mother had emphasized that was something she should always do right away. Two or three years ago, she stopped. Recently, she has started again. She doesn’t do it perfectly. The important thing is that she does it. I see it as another effort to take control of some aspects of her life.
She has become so open about not remembering names that I did something I have avoided doing until today. Without her asking, I asked her if she knew what city we were in. She said very calmly without conveying any sense of being troubled, “No.” I told her once again, “We live in Knoxville.”
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.
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.
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.
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.
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.
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.
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.
