Would you believe a fourth trip to see the Mr. Rogers’ documentary?

We had a full but very nice day yesterday. Kate was up early enough for us to make our trip to Panera, something that has been off and on lately. We were there about an hour and a half before leaving for lunch at Bluefin. From there we came back home for almost an hour before leaving for a movie.

When we were with our friends on Thursday, we learned that one of them had not seen Won’t You Be My Neighbor? She is 93 and is in excellent health and quite active. She said that one of our pastors had mentioned it in a sermon recently and wanted to see it. I called her Friday afternoon and asked if we could take her. We went yesterday afternoon. She loved it, and so did Kate who gave no sign that she remembered having seen it before. This goes down as the most times I have ever seen one movie. And I still enjoyed it.

Following the movie we went to dinner with our friend. Then we dropped her off and came back home where we relaxed a bit before retiring to the bedroom where we capped off the day watching the last of Fiddler on the Roof. I think this is my favorite musical after Les Miserables. I like each of them for different reasons. The music and then the story draws me to Les Miserables, but it’s the story and then the music that I love about Fiddler. I play them frequently for Kate. This and seeing Mr. Rogers a fourth time are good examples of my deriving pleasure from the same things that make her happy. I am grateful. We are very fortunate.

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.

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.

Kate still enjoys movies (if I pick the right ones).

Kate and I have enjoyed movies throughout our marriage. They’ve been especially important since her diagnosis. It gave us another bit of pleasure that was a complement to our other activities. A little over a year ago, I found that Kate wasn’t enjoying them the way she used to. Not wanting to let go of this source of entertainment, I worked a little harder to find ones that she would enjoy. Ultimately, however, we’ve been going to fewer movies. Recently, we’ve had two successes. The first was RBG, the documentary about Ruth Bader Ginsburg. The second was yesterday, Won’t You Be My Neighbor. It’s another documentary. This one, of course, is about Mr. Rogers.

When you know that Kate hasn’t been able to follow a plot for years, you might wonder how she could enjoy a movie at all. That’s because we can easily fail to appreciate the variety of ways in which all of us derive pleasure from life. Authors like John Zeisel (I’m Still Here) and Judy Cornish (The Dementia Handbook) have sensitized me to the many ways people with dementia (PWD) still enjoy life. I had already observed that with Kate, but their writings have made a great impact on my understanding of why this is true.

In particular, Cornish distinguishes between our rational and intuitive thought. Rational thought deals with the kinds of things we learn from parents, teachers, and many others we encounter. These include the rules of behavior as well as the factual knowledge like language, history, math, spelling, names of people, places, and things, etc. Intuitive thought involves experiential learning that occurs directly through our senses – touch, taste, smell, sight, and hearing. We put so much emphasis on rational thought that we underestimate the significance of what we learn experientially. I believe that is a major reason we believe a PWD has lost everything that makes life worth living. That’s a big mistake. As Cornish points out, intuitive thought provides us the ability to enjoy things like music, art, and interpret and respond to the feelings of others.

I find Cornish’s distinction between the two kinds of thought helpful in my understanding of why Kate can enjoy a movie she doesn’t fully understand. Her ability to think “rationally” has deteriorated substantially. She can’t follow a plot because that requires her to assemble pieces of information to make a coherent picture. On the other hand, she is able to experience things she likes and dislikes. She can formulate an impression of Ruth Bader Ginsburg without remembering that she that she was a good student, that she was a lawyer or a Supreme Court Justice. She obviously liked what she was seeing and hearing about her but wouldn’t recall any of the specific bits of information about her.

Unlike Ginsburg, whom she didn’t recall when going to the movie, she did have some recollection of Mr. Rogers. I am sure it was a very vague memory, but she probably began with a positive feeling about him. The documentary beautifully captures Rogers’ personality and feeling for children. The very sound of his voice communicates this feeling. I have no doubt that Kate could sense this. Of course, the film contains lots of scenes of Rogers with children. She loves watching children wherever we go. Seeing the children in various situations with Rogers was appealing to her. Moreover, the things that he was doing as he interacted with them, as well as his facial expressions and tone of voice all convey important information about him. These are things that Kate could easily understand.

I should make it clear that she hasn’t lost all rational thought. She is able to understand and respond appropriately to most of the things that people say in ordinary conversation. Watching a movie, she hears and usually understands what is said; however, it is gone in seconds. That keeps her from understanding many of the events that follow. The trick for me is to select a movie that contains people and events that she can enjoy simply because of the qualities of the people and events she is seeing and hearing without having to understand “the facts.”

That is particularly easy to grasp with documentaries like RBG and Won’t You Be My Neighbor. It may be less obvious for a film like Darkest Hour. That is another movie she liked. In that case, I know that before entering the theater, she recognized that Churchill was a person of historical importance and that WWII was a major event in our lifetime. What she saw and heard in the movie conveyed that as well. Without understanding any details about Dunkirk, she was able to identify with the film emotionally. That continued ability to enjoy life experientially has allowed us to maintain our quality of life even as she loses her rational thought. I am grateful for that.

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.”

Movies Becoming a Thing of the Past

Movies have been an important part of our activities during our marriage. They have been especially important during the seven years since Kate’s diagnosis. For at least a year now, it has become much harder for her to enjoy them. I continue to try to find something that might appeal to her, and sometimes I am successful. The last one she enjoyed was a recent one, Darkest Hour. I had hesitated to try it, but when I told her what it was about, she wanted to see it. I think it must have been impossible for her to follow. I am sure that she understood that it was about Churchill and World War II. I am also confident that she could sense the drama involved. These are the things that must have caused her to like the film.

Today at lunch I checked to see if there might be another film that we could try. I saw that one of our theaters was showing The Philadelphia Story with Katharine Hepburn, Cary Grant, and Jimmy Stewart. Knowing that Kate has always liked old movies and each of those stars, I asked if she would like to go. She jumped on it. I bought the tickets right then. We finished our meal and went directly to the theater.

It is a film that is certainly dated, but it is also a classic. It came out in 1940, the year I was born. I thought it was fun to see these stars at such an early stage of their careers. Several times during the movie, I heard Kate yawn audibly. I didn’t think that was an encouraging sign. It wasn’t until we got in the car that I asked what she thought of the movie. She said, “I don’t even know what it was about.” I told her she was a good sport, that I appreciated her trying movies even if they didn’t turn out to be winners. She said, “Well, you can’t expect every one to be hit.” So true. I am finding that the hits are fewer and farther between these days. We still have plenty of things that entertain us, but I hate losing something that has been so important in the past.

No Victory With the Movie

After lunch, Kate and I went to see The Greatest Showman. It’s a very “artsy” show that I liked, but Kate did not. In some ways that surprises me in that it contains many of the elements that she likes in a Broadway show, lots of singing and dancing. She might have liked it better as a stage production, but I think the music was not as engaging for her and the creative way in which the story is told made it impossible for her to follow. I suspect that there may be as much “truth” in the story as Barnum’s own productions. Fortunately, this is one that Kate did not dislike. She wasn’t bored or bothered by it. She didn’t complain about having seen it. As we walked out, I started to talk about my liking the fact that it made no effort to give the audience the idea that this was in anyway a documentary-like show. This was meant to be entertaining in the same way that Barnum’s shows were. I didn’t say much before Kate said, “Why don’t you wait till tomorrow to tell me about it.” That ended the debriefing as it often does.

When we got home, she remained outside to work in the yard. It is the warmest day we have had in a couple of weeks. I am glad to see her outside again. It really is good therapy for her.

Nearing the End of Movies

For some reason I had not made plans for anything special today. While we were having our Saturday lunch at Bluefish Grill, I thought about the fact that we would have a full afternoon without anything specific. I decided to see what movies were playing and noticed that a new movie that supposed to be a good family movie, Wonder, was playing across from the restaurant. They had a showing at 1:10 which fit our schedule beautifully.

For months, I have been attempting with minimal success to find movies that Kate can enjoy. It is only in the past year or so that has become a challenge. We had had great success with Jane last week. I thought surely this would be one she would enjoy. It is a very touching movie with a number of emotional moments. It focuses on a young boy who was born with a condition that has caused serious problems. After numerous surgeries, his face was scarred which makes it hard for him as he enters school after several years in which his mother had home-schooled him. The overriding premise to the movie is the value of kindness.

As always, I periodically looked over to see how she was reacting but couldn’t be sure until we left after the movie how she felt about it. I quickly found out that she was not enthusiastic. She indicated that she had been very sleepy, or she might have enjoyed it. I was very disappointed because I didn’t feel that she needed to be able to follow the plot that the children, especially the stars, would capture her attention. I have often heard that people with dementia can sense emotions longer than they are able to understand what is literally happening around them. I have had the impression that has been true for Kate because up until the past year, she was enjoying most of the movies we have seen. That didn’t work today. This was a movie filled with emotion, just the kind that should have touched and would have in the past.

Although I am disappointed and saddened by the phasing out of our movie-going, I don’t intend to stop trying. On the other hand, I must admit to more than a bit of pessimism that I will have much luck. When movies go, the next thing could be live theater and opera. Life is closing in around us.

Salivation Problem

This afternoon Kate and I went to a movie, Columbus, at The Flick. This is the second time at there this week. Two days ago is when I made the entry about her being angry with me over not recognizing her salivation issue that lasted for the entire movie. Today I went with a minor concern over whether or not she would like the film, not thinking about salivation. After picking up our tickets and ordering soft drinks, we started to enter the theater when Kate asked for a napkin. I went back to the lobby and picked up several of them knowing that one would never be enough.

We went through the introductory video with recognition of the donors and some advertising as well as the previews. She used one napkin and asked for another about the time the film started. That left me with only one. At that point I knew she would not have enough to get through the movie, but I didn’t worry because she doesn’t usually have napkins throughout a movie. Today I was more sensitive to her salivation than two days ago. She was obviously struggling. She burped out loud a number of times and had used up her last napkin. I was getting concerned about burping and the possibility that it was loud enough to be annoying to others. I asked her if she thought we should leave. She nodded. We got up and left. As we walked to the car, I asked if she could explain what she was feeling. I asked if it seemed just like ordinary saliva. She said it was. I then asked if it was coming up from the throat or within her mouth. With her hands, she indicated that it was coming up from the throat. I then asked if she were able to swallow the saliva. She tried and was successful. I told her to keep doing that and see if that helped. She did. I didn’t say anything more.

She continued to have the problem all the way home but did not burp again. She did stop swallowing the saliva and kept a napkin to her mouth until we reached home. When we got home, she wanted to know if she could work outside. I told her that would be fine. As she is accustomed to doing now, she asked if she could use the clippers. Then she asked me where she could go. I told her she could choose to start any place she would like. She said the thought she would start out front and looked to see if that were all right. I told her that would be fine. We were now back to normal.

I should comment on what I mean by normal. It still appears that she doesn’t swallow her saliva most of the time. As I noted a week or two ago, she does periodically stop. I suspect that when for some unknown reason she thinks about the salivation, she stops swallowing. In the case of the movie, she is very inactive and, perhaps, that heightens her awareness of salivation. Then she has a reaction like many I have witnessed before. The interesting thing is that she uses paper products to wipe away the saliva all the time; however, she doesn’t always have the negative emotional response that she had on Wednesday and today. I don’t yet have an explanation for that.

Another First (or Second) with Anger

Kate and I went to dinner and a movie tonight. The latter is a rarity for us now. I have not been scheduling anything at night beyond dinner for several months now. This time, however, The Flick, our favorite theater, had a Thai film that started at 7:00. It sounded intriguing, and I thought it was worth a try. During dinner, I was thinking about how well the visit with the sitter had gone. I also felt I should add another journal entry specifically about how good-natured Kate has been today. Right now I want to make it clear that she seemed remarkably agreeable and at ease. It was not only how she received the sitter but also how she responded to my help on getting her clothes to wear out this evening.

What I didn’t anticipate was how radically her mood would change as we left the movie. On the way to the car she mentioned how miserable she had been in the movie. I thought that was because she didn’t like the movie. It turned out that it was the result of not having paper napkins or some other paper product to Wipe the saliva from her mouth. I discovered this when I inquired as to why she had been so miserable. She let me know it was because she didn’t have any napkins. Then I made the fatal error of telling her that I wish she had told me because I had taken several napkins into the theater with me just in case she needed them. To my surprise that angered her because I had not offered them to her. I told her that I didn’t recognize that she had been miserable. She said I must not care for her very much if I didn’t notice her misery. I gave her a couple of napkins. “Too little, too late.”

In the car on the way home, she said in a very angry tone of voice, “And I have never exaggerated.” I told her I hadn’t said that. She said, “You certainly did just a little while ago.” I let it go because I could tell this was one of those instances in which she had had some kind of misperceptions (delusion) that I had done so, and it would do no good to argue. Later at home she expressed the strongest anger I have ever heard from her. Unprompted, she said, “I have never exaggerated about anything.” I told I knew that she never exaggerated. She didn’t say anything for a while. My impression was that she had gotten emotional over her salivation. She was burping and making other noises. In a few minutes, she came out of the bathroom with some toilet tissue that she was holding to her mouth. I told her I wished there were something I could do to help her. She looked at me and spoke in a gentle kind voice, “Oh, I’m fine.” She seems to be back to normal right now.