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A Quiet but Nice Day

Kate slept a little later this morning, so we didn’t get to Panera until just after 11:00. Then Andriana’s turned out to be busier than usual. That meant it took a little longer for lunch which actually worked in our favor. This has been one of those days when Kate has asked more questions about our family (her father’s name, my father’s name, our children, and where we live). I took advantage of that time to reminisce with her. I was partially motivated by her anxiety attack week before last. That night she didn’t know who she who or where she was. Since then I have been trying to give her a little more information about her and her family.

Today’s conversation dealt largely with our attendance at so many live performances since our first date to Handel’s Messiah. I reminded her that we began our 50th anniversary celebration with a trip to New York City during the Christmas season where we attended Messiah at St. Thomas Episcopal Church.

Then I gave her a Cliff Notes’ summary of other performances we have enjoyed since we married. Most have involved musical theater. The first Broadway and Off-Broadway musicals we attended were on our first trip together to New York in 1967. We saw the original productions of Man of La Mancha and Cabaret. Since then we have seen as many as 30-40 shows there and many more here in Knoxville. We have also had season tickets to the Knoxville Symphony for 30 years. We haven’t generally attended some of the more popular entertainers, but we have been to concerts by Louis Armstrong, The Mamas and the Papas, Gloria Loring, Eartha Kitt, Jimmy Buffet, Marvin Hamlisch, Bette Midler, Billy Joel and Elton John, Tony Bennett, Paul McCartney, Art Garfunkel, and Willie Nelson. Opera has more recently entered our lives but is a favorite. We’ve enjoyed opera at The Met in NYC, Vienna, Berlin, Amsterdam, Zurich, and Sydney as well as quite a number of the Live in HD at The Met performances broadcast live in local theaters.

I went through these things knowing that she wouldn’t remember many, if any, of the things we had done. She does, however, remember that we have attended lots of events like these. More importantly, she was very attentive and seemed to enjoy my them bringing up. At the end of our reminiscing, she noted how fortunate we have been to have had so many good times together. I agree and will cherish the memories when we are no longer able to share them.

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Success: Three Times in a Row

As I suggested in my previous post, I took Kate back to see Won’t You Be My Neighbor? yesterday. That was the third time in the past eight days. It was, as they say, a “smashing success.” Once again, the theater was packed with an appreciative audience offering its applause when it ended.

Throughout the film, I kept looking over at Kate to see how she was responding. At various moments throughout the film, she expressed audible pleasure. I wasn’t surprised, but particularly struck, when she responded appropriately to things that were both funny and sad. I’ve said before that she generally understands what she hears, but she can’t retain it long enough for the knowledge to help her understand what follows. As the review in the NY Times notes, the producer gives its viewers a “feeling” for Rogers and his connection with children. I know that Kate understood that feeling.

On the way out, we bumped into a friend in the lobby. He commented about being a regular at this theater. When we parted, Kate smiled and said, “Well, I’m glad to know where we are.” We’ve also been regulars at this theater for many years, but I wasn’t surprised that she didn’t remember.

In the car, she said she wanted to read more about the film and Mr. Rogers. I told her we could check the Times review. She liked the idea. I read it to her shortly after we arrived at home. She listened intently. About midway through, she said, “I want to see it.” When I finished, she said, “I may want to see it twice.” I can’t fully express how much pleasure I got out of the fact that she liked both the movie and the review even if she can’t remember either right now.

This brings to mind something I have often read in a variety sources on caregiving. They suggest the importance of living in the world of the person with dementia rather than trying to get the PWD to live in our world. I think that is what Kate and I have been doing. It not only works for her; it works for me as well. Had it not been for her I would not have gone to see the movie even a second time. Even though I liked it as much as she did, I would have thought it silly to go again so soon. By living her way, I got to enjoy the movie another two times. I’m finding the same thing with the DVDs of musicals I have purchased in the past month. We’ve watched the 25th anniversary concert of Les Miserables twice, the last 30-40 minutes three times.

Her world is clearly different, and I am not denying the sadness I feel at her loss of her memory for names, places, and events. On the other hand, we’ve focused on music, theater, movies, and social engagement. Those are things we mutually enjoy. They continue to add to the quality of our lives, and I am grateful.

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Very Special Moments

I am always happy to report the many good times Kate and I have. Of course, some are more special than others. That was the case last night. It started a few minutes before we were to leave the restaurant after our weekly pizza. A couple I had first met professionally came in and were about to be seated at the booth behind us. They had been clients who really made a significant difference in the success of my business. I had always enjoyed working with them. It had been a while since we had seen them, and we got into a conversation. Instead of our leaving, we ended up sitting with them for quite a while.

I know that Kate did not remember their names or anything about our previous connection, but she handled herself like a pro. She continues to know how to greet people and engage in light conversations. It was much more than this that made our time special. As the four of us talked, Kate and the woman started their own conversation. I didn’t hear a word they were saying, but it was a pleasure for me to see Kate so engaged. This is a rare experience. In most group situations she ends up being left out, but one-on-one she can do well. We’ve had several of those experiences lately. I’ll have to work harder to arrange more in the future.

If the day had ended right there, I would have been happy. There was more to come. The previous three nights we watched the 25th anniversary concert production of Les Miserables. It’s a three-hour concert. We watched about an hour each night. This was the second time to watch this DVD in the past three or four weeks, but Kate loved it every bit as much as the first time. Because of this, I asked if she would like to re-watch the final segment again last night. She did. I was curious to see if the repetition would dampen her enthusiasm. Absolutely not. If anything, it was more intense. As she had done previously, she expressed her feelings audibly, both in comments and in “Oohs” and “Ahs.” She not only praised the quality of the singers voices but also their acting ability. She was talking specifically about their facial expressions as they conveyed the particular emotions appropriate to each song. I took note of her ability to recognize emotions as well as she ever could. It’s also another powerful reminder of the impact that music can have. It was important to us before Alzheimer’s and even more so since.

Now I am thinking of trying something else today. Several times this week, I have mentioned the Mr. Rogers documentary, Won’t You Be My Neighbor? At least once, she has said she wanted to see it. We saw it last Saturday. She enjoyed it so much I took her back to see it on Tuesday. I am seriously considering taking her again this afternoon. That might seem a strange thing to do. It would be unusual for us. I don’t ever recall going to see a movie three times, especially in one week. Two things are motivating me. First, she really enjoyed the movie the first two times. I think she is likely to feel the same a third time. Even if she liked it less, it would still be fun for her. Second, we don’t have any other plans for the day. If we don’t go to the movie, we are likely to spend a little time at home and also Banes & Noble. She would be working on her iPad. Although she rarely seems to tire of that, I think might be a good alternative. Whatever we do, I am optimistic that it will be a good day and grateful for all the good days in the past.

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As Expected, A Strong Finish

I am pleased to say I didn’t have any false expectations about the balance of our day yesterday. The movie, Won’t You Be My Neighbor?, was as good as it was three days ago. I didn’t say a word to Kate about its being the second time we had seen it. I just said I was taking her to a movie. She asked the name, and I told her. She didn’t show any sign that she recognized we had already seen it. She asked what it was about. I told her it was about Mr. Rogers. That appealed to her.

As we entered the lobby, we saw two people we know. One is a member of our church. The other is one of Kate’s favorite PEO sisters. It was no surprise that she didn’t remember either name. I was struck, however, as we walked away. She said, “I know that person (her PEO sister), but I can’t remember her name. I remember that I really like her.” When I told her, she recalled the name but nothing else about her except liking her. This is yet another example of her intuitive thinking in action.

She loved the movie. I am confident that she never remembered seeing it before. She talked about how good it was, but she didn’t know it was about Mr. Rogers. When I told her, she said, “And what did he do?” I told her he had a children’s TV program.

It was time for dinner when we left the theater, so we stopped by Bonefish Grill and had a nice meal. When we got home, we watched the first part of the 25th Anniversary Concert of Les Miserables. We had watched it a couple of weeks ago. She had loved it then and again last night. It is my favorite musical. I don’t know which I enjoyed more, the concert or seeing Kate so engaged. She didn’t even touch her iPad, a rarity. The day ended even better than I had expected.

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Making a Good Recovery

I am very happy to report that yesterday Kate didn’t show any of the signs of anxiety that she experienced night before last. She got up a little earlier than usual and acted like nothing had ever happened. Of course, I didn’t expect her to remember. That’s a good thing.

I was especially happy that she got up without my waking her. Two church friends had invited us to meet them for lunch at 11:45. As it turned out, Kate was awake early enough for us to spend an hour at Panera before leaving for lunch. We had a good time. These kind of social encounters are good for Kate as well as for me. As usual, Kate handled herself as though she doesn’t have Alzheimer’s.

After lunch, we came home for about an hour. Kate rested a while before I got her up for her 3:00 appointment for a massage. The massage therapist mentioned that she was very talkative. I was glad to hear that. I started arranging one massage a month about three years ago. At the same time, I arranged one facial a month as well. I space them so that she has one or the other every two weeks. Kate doesn’t say much about them although she often wants me to feel her cheeks after the facial. They are always so smooth.

From there we went to Barnes & Noble for an hour. Then we came home to change clothes and leave for Casa Bella. It was Broadway night. One of the men with whom we sit was celebrating his 94th birthday. His daughter and husband, who now operate the restaurant, arranged for 16 of us to sit at one long table. We were served family style. The music was terrific, and it was another great social occasion. I sat next to a woman who told me she thought Kate does a remarkable job at these musical evenings and that she would not have guessed she has Alzheimer’s if I had not told her. Last night Kate discovered the woman sitting next to her is a former librarian. They had a good conversation about their common background.

Even though we had a good day yesterday, I do wonder if or when Kate might have another experience of anxiety. I hope that was an isolated incident, but I’ll be on guard for more.

In closing, I can still say that Kate continues to do very well to be so far into her journey. I am grateful.

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Meeting our Expectations

In my previous post, I mentioned that the Greeleys were visiting us for the afternoon and that I expected to have another great day. It was a very good visit. We showed them a little bit of our world. Kate was late in getting ready, so we had them meet us at Panera. We chatted briefly before driving to Bluefish Grill for lunch. We introduced them to our friends out there, the hostess, our server, and the manager.

We caught up on their lives as well. Scott had recently returned from a three-week trip to Native American land in Arizona and New Mexico. This was another one of his many trips with students. He is preparing a video of the entire trip for them. He showed us three-quarters of it yesterday. Very impressive and very interesting. While Kate and Jan had a conversation, Scott gave me a fascinating Cliff Notes summary of the trip and culture of the various Indian tribes.

At 5:00, I received a phone call from a former housemate at TCU. I told him he called at a good time and would never guess who was with us. When I told him, Kate responded with great surprise and said, “Scott Greeley? I didn’t recognize you.” I was equally surprised at her reaction. Although I know she can’t remember their names, it never crossed my mind that she would have spent more than five hours with them and not know who they were.” I have to believe it was a momentary lapse. I do know that she usually knows my name, but sometimes she forgets. When I tell her, she often says, “I knew that; it just slipped my mind.” Whatever the reason, it got my attention.

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Our Day in Nashville: Part 1, Lunch with the Robinsons

Yesterday we made a day trip to Nashville to visit friends. We had lunch with the Robinsons. Our friendship goes back to TCU, and we have visited back and forth between Knoxville and Nashville for almost 47 years. Our children were very young, and we carted the various paraphernalia likes cribs, diapers, and snacks for an overnight stay. As we have aged, we’ve made the trips much simpler. We have lunch out and then go back to the house for conversation before going back home for dinner. Yesterday’s visit was simpler than that. We met the Robinsons for lunch and dessert and then went on to visit Kate’s best friend, Ellen, who now lives in a memory care facility.

Given Kate’s recent changes, I feel it especially important for us to be with old friends as much as possible. I was especially pleased that our visit with Tom and Angie went so well. In an email this morning, Tom said they thought Kate was pretty much the same as she has been during other recent visits. I agreed with him. She was an active participant in our conversation as she was at lunch with the Greens the other day. I continue to be encouraged at how well Kate does in these kind of social situations. I am hopeful this ability will remain with her for a good while.

The Robinsons were already there when we walked into the restaurant. Kate hadn’t remembered we were meeting them and said, “What a nice surprise.” Of course, I should have reminded her as we walked into the restaurant. This is one of those times I had talked about it a number of times including in the car. It just slipped my mind to remind her just before we saw them. It’s a good illustration of the fact that I can often treat her as though she can remember. She is so normal in other respects that I just forget.

I received an email this morning from my former TCU roommate, Bruce Morton. He and Tom and I send multiple emails to one another daily. He asked if Kate remembered the Robinsons. I told him that is a good question and that it involved what it means to know someone. There is no question that she has trouble remembering their names. Even after spending almost two hours with them yesterday, she asked me their names when we got in the car to leave. She had done the same thing on the drive to Nashville.

She greeted them exactly the same way she would have done in years past. I am sure, however, that she would not have been able to remember our past visits together, that they have children, where they live, etc. She recognized them as people that she has known before. It’s an emotional connection that remains even though all of the names and facts associated with our relationship have faded away. It is something that I did not understand when she was first diagnosed nor quite a while after that. I am glad to have discovered this. It has extended our ability to get together with friends much longer than I would have predicted 7 ½ years ago.

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A socially active day, and it’s not over.

I knew this was going to be a full day, but it’s turned out to be more than I expected. That’s good news. We had a very nice lunch with Angela and Marvin Green who are members of our church. It was an unusually good social experience for Kate. Normally, when we are with another couple, almost all of the conversation is among the four of us. We had some of that today, but there were at least two times when Kate and Marvin were engaged in their own conversation while Angela and I did the same. Kate handled herself well and was quite talkative. I couldn’t help wondering how much of what she said was actually true, but it doesn’t matter. She was having a marvelous time. Angela asked what they could do for us. I told her that going out to eat together was the very best thing they could do. It really meant a lot.

After we returned home, I received a phone call from another church friend. She and Kate became friends when Kate served as the volunteer church librarian. Martha wanted to know if she could drop by to visit with Kate. I told her that would be fine. When Martha arrived, I told them I was going to let them visit and went to the kitchen which doubles as my office. I couldn’t hear what they said, but they never skipped a beat in their conversation. I don’t know who was happier, Kate or I.

It is a very rare event for Kate to have the opportunity for the kind of one-on-one conversation she had both at lunch and this afternoon. We are going to opera night at Casa Bella in little over an hour. That is always special, but I feel sure the two social experiences she has already had will be the highlight of this day.

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Another Musical Highlight

As Kate continues to decline, it makes me happy when I see her enjoy life. Nothing else has the impact of musical performances. What makes it even more special is that we share this pleasure together. This week we have had four evenings of musical entertainment at home. I purchased two DVDs that arrived on Monday. One was Fiddler on the Roof. The other was Les Miserables. We watched Fiddler on Monday and Tuesday night. We watched Les Mis on Wednesday and Friday night. I can’t remember a time when she has been so demonstrative in her expressions of pleasure. There were moments in each musical that made her a bit teary.

I should add that it’s not just the music itself that moves us. We both enjoy the visual aspects of productions, the staging, the lighting, and, especially, watching outstanding actors giving their all. The video of Les Mis is not the theater production. It was the 25th anniversary concert at the Barbican Centre in London. They pulled out all the stops for this one. They brought back former actors for each of the major roles who joined in rousing performances of some of the signature music. This is our favorite musical, and this production was spectacular. I would have loved it had I been alone, but to share this moment with Kate at this point in in her Alzheimer’s was something to treasure.

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Good Times with Bitter Sweet Moments

Once again, I am happy to report that the balance of our day yesterday was as good as the start. After returning from lunch, Kate rested for a little over an hour. Then we went to a movie. This was a bit unusual in that it was a movie we had seen just last week, RBG. Kate hadn’t remembered it, but she had enjoyed it. Since we didn’t have any special Memorial Day plans, I decided to take her again. We liked it just as much the second time, and I appreciated the artistry with which the story was told even more than before.

As we were getting out of the car before the movie, she again asked my name, and I told her. She is so very natural when she asks me. She shows no sign of being bothered by having to ask nor does she seem to be concerned about hurting me. Other than the question itself, she doesn’t sound like we imagine a person with Alzheimer’s would sound just childlike.

While we were at lunch, I received two DVDs from Amazon. One was Fiddler on the Roof. The other was Les Miserables.  Last night we watched a portion of Fiddler. Although she was working puzzles on her iPad throughout the movie, she was following it and enjoying the music. I did as well. This is rather unusual since she hasn’t expressed much interest in TV programs or movies in a long time. It was a nice way to end the day.

Kate was already in bed as I pulled back the covers on my side to get in bed when she said, “Do I have a name?” I told her she did and went over to her side of the bed, sat down and told her. I said that she had a special name because it was a family name. That prompted her to say how much she loved all her aunts and uncles. She was in one of her talkative moods again. She started to talk about our relationship. She has a set of things she recites. She is glad we met and how fortunate that we have been. Last night she also talked about how comfortable she is when she is with me and how easy it is for her to say things to me.

I continue to interpret her behavior in light of what I have read in The Dementia Handbook. The loss of her memory is dramatically expressed in her failure to recall names and facts, but her senses are alive. Every few minutes as we watched Fiddler, she would say something about what a good movie it is and how much she liked the music. More importantly to me, she still has special feelings about our relationship and me. And, as she has said, “I can’t even remember your name.”