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A Moment of Pleasure, For Her and For Me

Kate hasn’t read any books or periodicals in years, but once in a while she picks up a book at home and puts it near her chair in our bedroom or near a chair or sofa in our family room. Although I’ve never seen her look at them, I assume she must have taken a glance before taking them off a shelf and setting them aside to be read “later.” She has taken particular interest in books that were from book shelves in her parents’ home.

This morning before going to Panera, she brought a book to the kitchen and said she wanted to take it with her. (She wasn’t just informing me; she was asking if that would be all right.) I told her that would be fine. When we got to Panera, she left the book in the car.

I had left a cup at Barnes & Noble yesterday afternoon. After lunch, I told Kate I would like to drop by B&N to see if it had been turned in. She was fine with that. I parked the car in the lot in front of the store and told her she could come in with me or sit in the car. She said she would like to remain in the car. When I returned, she was looking at the book. It was entitled Bird Life in Wington. She told me it was fascinating and wanted to read a passage to me. Her eyesight (from cataracts and her Alzheimer’s) make reading nearly impossible. She struggled, but didn’t read to me. She just leafed through the book and, periodically, would stop and attempt to read. I don’t know much about the book. From what I could see and what little she could read, it is a novel about a fictitious town called Wington in which all the characters are birds.

As she was perusing the book, I noticed her mother’s handwriting on one of the pages. I pointed this out to her. She was touched by that and pulled the open book to her chest. She was so taken with the book at that point that she didn’t want me to drive away; so we sat in the car 5-10 minutes as she skimmed through the book, stopping periodically when something on a page caught her attention. As she did this, I pointed out other places where her mother had written something. Although I don’t believe she understood much about what she was reading, she was thrilled with the book. It was a thrill for me to see her get so much pleasure from this discovery. I told her it looked like it might be a book that her mother had used in her Sunday school class she taught for so many years. It appeared that each chapter may have focused on a particular moral lesson. Of one thing I am sure. This was a special moment for Kate and, thus, for me.

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More Good Times With Friends

Today has been a good one for social engagement. Angie and Tom Robinson were in town for lunch and a pleasant afternoon of conversation. We had lunch at Carla’s. They had liked it year or two ago when we had first taken them there. I am glad we went. It offered them a glimpse of why I say that eating out is a social occasion for us. We go to Carla’s frequently and know several of the restaurant staff. One of those is the manager, who stopped by our table to say hello. She ended up giving us complementary desserts. As we were about to leave, the newly retired CEO of United Way took a table next to us. We introduced him to the Robinsons, and we spoke briefly before leaving. After that we came back to the house for more conversation.

It had been a good visit. Kate participated more than she usually does. She was more animated than normal, sometimes more assertive as well. I’ll have to talk with Tom about his impressions, but I felt she handled herself well. She is changing, but she does far better in social situations than I would expect knowing how little memory she has. At one point, she asked Tom about Bruce, a mutual TCU friend and one of my former roommates. I was surprised she recalled his name. As usual, I knew that some of the things she said were figments of her imagination. They aren’t, however, the kind of things that provide an immediate alert to others that she is confused.

After they left, I told her how well I thought the visit had gone. She agreed. Then she said, “Who are they?” After I reminded her, she said, “Oh, yes, from TCU.” Part of our discussion this afternoon was about our days at TCU. I was glad to see that she still had not totally forgotten that connection. Then she asked, “Who are they again?”

She is having significantly greater trouble recalling names in the past couple of weeks. Today, she asked, “What is your name?” I find it hard to believe that she has forgotten, but that is what it sounded like when she asked the question. After I told her my name, I asked, “Now what is your daughter’s name?” She couldn’t answer. I said, “Jesse.” Then she immediately gave me Jesse’s middle name. Clearly, the first name triggered the middle name even though it is one we do not use.

The changes in her memory make me think that making another trip to Texas in the spring and a trip to Asheville for our anniversary may not happen. If that is so, there are likely to be other changes on the horizon, and not as distant as I would like.

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An Unusual Conversation

I find that there are so many things going on in our lives that I don’t come close to writing about all of them. There are also events that I want to report but can’t do so at the time. Then later I forget them. One of these things occurred about ten days ago. Here’s the story.

One of the topics I have mentioned on several occasions involves the conversations between Kate and me. I would have said more if there were more to say. The truth is that Alzheimer’s is hazardous to conversation. Normally one doesn’t think of it, but conversation is dependent on our memories, Much of that involves recent memories like things we have done, people we have seen, events in the news, and places we have been. Kate can’t remember any of these things. That means she relies on her distant past. For a good part of her journey, she has often spoken about her family and, especially, her mother. That has carried her in limited social encounters with friends or strangers. She has also done that with me, but we are together so much that the result is that she doesn’t talk much at all. We say very little wherever we are. As a talker, that has been a significant loss to me. She actually prefers that I minimize my talking. I suppose that makes it more comfortable for her. She doesn’t have to respond.

A week ago this past Saturday, we drove to Nashville to visit Ann and Jeff Davis. Typically, we would spend the entire time in silence. This trip was a notable exception. We talked just over an hour of the two-and-a-half hour ride. During this time, we focused on things for which we are grateful. These included things like our marriage, our children and grandchildren, our parents, friends, things we have done, and places we have been. We kept the conversation at a more general level that didn’t require Kate to recall specific details. I loved having such a conversation and hearing her express her thoughts on all these topics. I am confident that Kate enjoyed it. I know I did. As an added bonus, it made the trip to Nashville seem a lot shorter than it really is.

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Making Choices

Everyday all of us find ourselves making choices to do one thing or another. We can’t do it all. It’s no different when one is caring for a person with dementia (PWD). The only difference is the caregiver always tryies to decide  which of two or more alternatives is the best one for the PWD. I’ve had to make one of those decisions today and hit a home run.

This afternoon the UT Opera Theater had an annual student recital. We have attended several of these in the past and enjoyed them immensely. The Live in HD at The Met production today was Tosca. We couldn’t do both; so I decided on Tosca. Although I am sure the recital was good, I believe I made the right decision. We’ve seen quite a few of these operas, and this was one of the best. Kate loved it. When she is really enthusiastic about a performance, she not only applauds but also says, “Wow.” I heard several of those today. I am a little sensitive about this because she is the only one in the audience that expresses anything audibly.

While the opera itself was outstanding, it was even better to know that Kate was so enthusiastic about it. At the last of these operas last spring she wanted to leave after the first act. I don’t remember what opera that was. I do know that was the first one she has not enjoyed. I feared that our opera experiences might be nearing the end. It looks like we have a bit longer. This coming Friday, we are attending a performance of The Barber of Seville by a European opera company that comes to Knoxville periodically. In addition, there are several other Live in HD productions I would like to attend, including La Boheme and Cosi fan Tutte.

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Preparing For and Enjoying Time with Friends

Kate got up earlier this morning but late enough that we were a little short of time before meeting a group of friends at 11:00. We squeezed in just enough time for get Kate’s muffin. As she was eating, I reminded her that we were going to a birthday celebration today. As I had expected, she hadn’t remembered. I explained that this was a group of friends who had been faculty colleagues at the middle where she had been the media specialist for about ten years. Several of them had January birthdays and used to celebrate together. It had been five years since our last time together; so I had arranged for us to do it this year.

Kate asked me to tell her who would be there. I went through each of the six other people besides ourselves. In a moment, she asked again. After that she said, “You might have to tell me again.” She then asked me how we knew these people. I reminded her of the school connection.

Then she asked me to tell her who our children are. As she did the other day, it sounded like she really knew and just wanted to practice names. I told her their names. Then I proceeded to tell her the names of the grandchildren. After that she said, “Where are we right now?” I asked if she “meant this place.” She nodded, and I said, “Panera.” When we got in the car she asked, “Where are we?” I asked if she meant the city. She did, and I told her. As we neared the home of the couple hosting the event, she asked me the names if the people we would see. I told her and also told her I didn’t think she would have to worry about knowing each person’s name, that everyone would assume she knew them. I may be imputing too much, but she looked a little apprehensive as we arrived at the house.

We were greeted by three people at the front door. From that point, everything went well. Kate’s gift for social interaction came to the rescue. I suspect that everyone was surprised at how well she seems to be doing. There was a lot of conversation before, during, and after the meal. Kate was not very talkative, but neither was I. Several of the others are big talkers, and there was a lot of reminiscing of experiences they had shared in their teaching careers.

There were only two things that Kate said that would have been signs of her Alzheimer’s. The woman hosting us had prepared a spaghetti casserole that was a recipe of Kate’s mother’s. We talked briefly about that early in the meal. Fifteen or twenty minutes after that as we were talking about foods that we liked, Kate said, “I wish you could have had my mother’s spaghetti casserole.” I had informed everyone of Kate’s diagnosis before we got together; so they didn’t say anything to make her realize that was something we talked about before.

The other thing was that Kate told them about a school at which she had taught. As she described it, I knew that she was talking about the school where each of them had taught together. I was a bit uncomfortable as she was talking because I knew that some of the things she said weren’t true. I am sure everyone realized that she was confused.

What I will take away from this gathering is that Kate handled herself very well, and we both enjoyed ourselves. I still can’t escape the sense that she is changing significantly and hoping that she will be able to function well in social situations for a good while to come.

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A Very Good Day

Kate got up somewhat later yesterday morning, about 8:45. We were at Panera just before 10:00. She worked quietly on her iPad until a little before 11:00 when she was ready to go home. This is a time when she usually would work outside until lunch, but she came inside and lay down in bed. I think she was still a little tired from our trip last weekend. In addition, she had gotten to bed a little later the night before. The weather has improved but is still somewhat cool. That may have also played a part.

I wondered how long she might rest. I didn’t want her to take too long because we had planned a trip to Nashville for a late afternoon visit with Ann and Jeff Davis. Fortunately, she got up at 11:30 and was ready to go. Originally, we had also planned to see Ellen, but her daughter sent me a text the night before saying that she was sick. We hadn’t seen the Davises since before Christmas; so I decided to go ahead.

We both enjoyed visiting with Ann and Jeff. Our relationship goes back to Madison when Jeff and I were both grad students in sociology. Later, we both joined the faculty at UT. Both couples had daughters the same age, and we used to get together very frequently until they moved away. We have continued to enjoy periodic visits with them either in Nashville or Knoxville. During the past few years, I have tried to be more deliberate in arranging visits because it means a lot to Kate and to me. I realize that it won’t be much longer until our visits are much different than in the past. Of course, they aren’t the same now. Yesterday, Kate said very little, but she was comfortable. It appeared that she was getting along well. On the way home, she confirmed that it had been a nice visit. I agreed. It had been another nice day.

Kate’s recent decline in memory has increased my motivation to arrange other visits with the Robinsons and the Greeleys. Both couples live in Nashville as well. As I look to the future, I am unable to predict just how Kate will change and how that will impact our activities. I do remember that my dad took my mom with him wherever he went except his Kiwanis meetings up until her last week or so when she was bed ridden. In his case, they were not traveling out of town. My plan for us is to continue taking it one day at a time. That has worked for us so far. I hope it will serve us well in the months ahead.

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Special Moments

For most of the progression of Kate’s Alzheimer’s, she has been less talkative than she used to be. That has meant a significant change in our conversations. We often spend most of our time together in silence whether at home, during meals, or in the car. That has required an adjustment on my part since I am more of a talker. My parents talked constantly. I recall times when they had talked while my dad was getting ready to leave for work. and then again as soon as he reached the shop.

Kate’s and my conversations were never like those of my parents, but I would say they were probably similar to that of most couples. Talking requires too much of Kate. It is not uncommon for her to ask me tell her tomorrow what I was about to say right then. That ends the conversation.

Once in a while, however, she does want to talk. When she does, I welcome and encourage it. The subject matter is usually the same. She talks about her family and us as a couple. That was the case while we were at lunch today. I said something about the pictures I had taken over the weekend in Texas and mentioned her cousin Chester. When I did, she said something that let me know that she didn’t remember his passing away last week and attending his memorial service just two days ago. I often just let things like this pass, but I told her that Chester had died and that we had just returned from Texas. Then she said something about remembering being in Texas.

From that prompt, she said, “I’m really glad you got to know my family.” I told her I was glad too and that it had given me an appreciation for large, close-knit families. She continued the conversation talking about her father. She always speaks fondly of him, but she talks more about her mother. Then she talked about us. She mentioned how well things have always gone for us. I concurred. We both talked about Kate’s father having married a girl from out of state and her doing the same. We talked about the places we had lived and the excitement of each stage of our lives. Naturally, that included having children.

It was a very slow and tender conversation. I wasn’t just listening but participating. It is one of those special times that come along periodically. They always remind me that some of the best times we ever have are those that occur spontaneously and involve simple pleasures like today’s very ordinary lunch. She won’t remember it, but I will.

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Kate’s 77th Birthday

Yesterday was Kate’s birthday, and I hadn’t envisioned much of a celebration since we were in Fort Worth for the memorial service and related events surrounding the passing of her cousin, Chester. It turned out, however, that we didn’t have anything scheduled until the family gathered together at 1:30 before the service at 2:00. Kate’s cousin Sharon asked if she could take Kate to lunch as a birthday treat. Together we turned that into a larger gathering to include Kate’s brother, Ken, and his wife, Virginia, as well as our son Kevin’s family. It was a special treat to have another cousin of Kate’s who is from Massachusetts. She hasn’t attended as many family gatherings over the years, and it was nice to visit with her.

Sharon made arrangements for lunch at a restaurant that was close to the church. The lunch turned out to be a perfect way to recognize Kate who hadn’t remembered it was her birthday. Ken and Virginia got us off to a good start by ordering Saganaki, a Greek flaming appetizer. That started the celebration with a little flare, or should I say flame. All of us got out our cameras/phones to capture the flames. That was followed by lots of visiting and good food. It was special for her to share those moments with people who are so special to her. When we got in the car to drive to the church, I said, “Happy Birthday.” Kate said, “Oh, is it my birthday? I didn’t know.”

We met in the Franklin Center of the Methodist church where Kate’s family had been members for so long. Her grandparents’ home had stood on a portion of the property now occupied by the church. The Center has a display of some of the things from the home. Kate loved looking at these things as if for the first time. In her mind it was exactly that.

It was a beautiful service and especially moving for Kate. Family has always been important to her, and Chester was significant for a number of reasons. He had remained in Fort Worth as the rest of the family had made their way to other places. Family was very important to him. We saw him as someone who kept the family memories alive in the place where Kate’s grandparents had made their mark in the early part of the twentieth century. Chester had also been very active in the community in a variety of ways. The church was packed to honor him.

Following the service we spent a little time with Ken and Virginia. Then they went back to their home in San Angelo. We checked into a hotel near the airport for our flight out shortly after noon today. Kate is sleeping soundly. I will probably wake her in another hour or so. I would like to leave for the airport around 10:00. As we leave today, I am feeling good that Kate has had this time with the larger family. That is not something I had thought would happen. She won’t remember it, but each moment meant a lot to her.

 

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Still Appreciating Live Performances

Over the fifty-four-and-a-half years of our marriage, Kate and I have attended a wide range of live performances from Willie Nelson to Bette Miller to Billy Joel to Itzhak Perlman and Renee Fleming. Since Kate’s diagnosis seven years ago next week, we have made a special effort to enjoy the performing arts. We’ve also enjoyed movies, but as I have noted before, Kate is less and less able to appreciate them. That has made me wonder how long she would like the various musical performances we attend so often. I still don’t know the answer to that question, but I am optimistic that it will last a while.

We are now attending three musical events a month in addition to periodic events throughout the year. The three regular programs are opera on the first Thursday of the month, jazz on the second Thursday, and Broadway on the third Thursday. Last week it was opera. Tonight it was jazz. Kate thoroughly enjoys each one. Tonight as well as the previous jazz nights, we have known the clarinetist and trumpet player. They are both retired music faculty at UT and are well-known locally. Although she didn’t talk much with the people at our table, Kate also enjoyed being with them. We sat with two couples. One we sit with every time. The other couple was new to us, and we thoroughly enjoyed them. Programs like this give us both a lift. I am optimistic that we will continue to enjoy them in the future.

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Kate’s not the only one who forgets.

Kate has a nickname for me, “MM,” “My Memory.” I don’t really have a great memory, but she thinks so. Of course, compared to hers, it is fantastic. I am able to help her with most things she forgets. It is not unusual, however, for me to slip up. I did just that this afternoon. I completely forgot about our 3:00 appointments for haircuts. Fortunately, Dawn called about 3:05 to ask if she had made a mistake. I checked my calendar. I had entered it correctly. I just hadn’t looked at it.

Her phone call broke into a very peaceful and unusual moment. Kate and I had returned from lunch a few minutes before 2:00. It is the first nice day after almost a week of cold temperatures. For that reason, I fully expected Kate to head straight for the yard when we got home. Instead she came in the house and brushed her teeth. Then she brought her iPad into the family room and took a seat. When I saw her, I told her I would come in and join her. I put on some piano music by Andre Previn and sat down on the sofa with my laptop where I made my previous journal entry. We don’t have many moments like that. I think we were both enjoying it. I know I was. Thus, I had mixed feelings about Dawn’s call. I knew we had made a commitment to be there. I needed to have my haircut, and Kate was due for color. On the other hand, I hated to break the spell. I’ll remember that as a special time during which we didn’t say a word to each other. We just enjoyed quietly passing time together.

As I reflect on what I just said, I have to contradict myself. Every evening we have a similar experience when we return home from dinner. We go back to our bedroom where I sit in my chair and watch the PBS Newshour. Kate sits in her chair and works on her iPad. It is a very peaceful way to end the day. I think what struck me this afternoon was having the experience at that time of the day. Typically, when we are at home, Kate is outside, and I am inside.