My Thoughts on Giving Advice

In two recent posts, I discussed some of the many reasons that Kate and I have lived well while “Living with Alzheimer’s.” Many of them were unrelated to anything specific we have intentionally done. Some of them, however, were deliberate choices we made that turned out to be very beneficial. As a result, some people might think I would jump at the chance to give advice to others, but such is not the case. Let me explain.

Long before Kate’s diagnosis, I learned that many caregivers are annoyed by the advice they receive from friends and family. That occurs most often because the person giving the advice doesn’t fully understand the situation of the person receiving it. There’s a saying that is common among the community of dementia caregivers. “If you’ve had one experience with dementia, you’ve had one experience with dementia.” The point is that each case of dementia has its own unique characteristics; therefore, what works in one situation may not work in another.

When people give advice, they usually believe that what worked for them will work for others. They do this without fully understanding that the circumstances of the person receiving the advice may be (and often is) quite different from their own.

My earliest personal encounter with this occurred after we brought Kate’s mother into our home with 24/7 in-home care. Kate was annoyed when an acquaintance periodically encouraged her to put her mother in a skilled nursing facility. That might have been a good suggestion for some people, but not for us. For a variety of reasons, we believed that in-home care was the best option for her mother and for us. I still believe that. Since then, I’ve heard other caregivers talk about their irritation with similar unwanted advice.

As a result, I try to avoid giving advice. There is one notable exception. That is based on what I learned from Judy Cornish, author of Dementia Handbook and Dementia with Dignity. Her approach to dementia caregiving emphasizes an important distinction between rational and intuitive thought. In her view, all is not lost with dementia. Although people with dementia lose their rational thought, they retain their intuitive thought which relies on direct experience with the world via our senses.

That means that even as memory declines, people with dementia can continue to enjoy many aspects of life. For Kate and me, that has involved music, movies, theater, dining out, and social connections. With Kate at late-stage Alzheimer’s, we can’t pursue these interests in the same way that we did during earlier stages. For example, she lost the ability to use her computer which allowed her to connect with family and friends and work on photobooks of family photos. She also lost her ability to use her iPad. She had used it to work jigsaw puzzles for hours a day. We gave up travel. We gave up eating out. As I often say, our world today is much smaller than it used to be, but we can still enjoy life and each other. That’s because we continue to find activities that she can appreciate via her intuitive thought. That includes music which has been an important source of entertainment throughout our marriage.

My primary advice to others who confront the diagnosis of dementia is to accept the fact that rational thinking will become weaker and weaker and focus on what loved ones with dementia can do and appreciate. When you think about it, most of the things we enjoy, whether we have dementia or not, relate to intuitive not rational thought. We don’t derive most of our pleasure from our knowledge of things like the names of current political figures or how to multiply or divide 1,396 by 3. Most of our pleasure comes from eating our favorite foods, listening to music, watching movies or TV, time with good friends, etc. A person with dementia can enjoy all of these things even years after their diagnosis.

I’d like to emphasize one other thing that people with dementia can appreciate via their intuitive thought, and that is LOVE. Love can play a role in lifting anyone’s spirits, but it can be especially helpful with people who have dementia. Their loss of rational thought can easily lead to a lower sense of self-worth. People respond differently to them because they are often unsure of what to do or say. The result is that people with dementia are often ignored, and their sense of self-worth is weakened.

For that reason, I believe caregivers should do everything they can to make sure their loved ones know that they are loved – that they matter. This is easier said than done. Caregivers often find themselves so occupied by routine responsibilities of caregiving (that their own rational thought tells them are important) that they overlook the most important thing they can do – making loved ones feel they are loved.

One reason I feel comfortable giving this advice is that it does not require that other caregivers do the same things that Kate and I have done. When we decided to enjoy life and each other for as long as we were able, we looked to things that had always given us pleasure – music, movies, theater, eating out, travel, and time with friends and family. We were lucky that both of us enjoyed all of these things. That doesn’t happen with every couple, but I do hope that other couples and families might be able to find their own ways to enjoy life and each other. It is certainly worth trying.

A Victory with Sound of Music

Kate and I have always enjoyed movies. They became an especially important part of our lives after her diagnosis. Gradually, it became difficult for her to understand the plot and follow much of the action. I was about to give up on movies when we saw two that she enjoyed in 2018. One of them was Won’t You Be My Neighbor about Mr. Rogers’ television program. The other was RBG about Ruth Bader Ginsburg. We saw the Mr. Rogers movie at least four times and the Ginsburg film two or three times. I’ve had little success with movies since then.

Periodically, I’ve tried them at home with no success. It’s very hard for her to focus on them. On the other hand, we’ve had great success with music videos on YouTube and the Twenty-fifth-anniversary concert of Les Miserables. We watched the latter over and over for several months after I first got it. A lot of the non-music elements of the concert were unimportant to her although she did respond to individual singers as they sang their solos. The same is true of the other music videos we watch on YouTube. It’s really the music itself that catches her attention.

Last year, I bought several DVDs with the film versions of Broadway musicals. I thought she might enjoy them, but there is too much dialog between the songs to keep her attention. Last week, I decided to try again with Sound of Music. At first, I thought I would simply fast forward to the songs, but then I took a different approach. I narrated the movie for her, explaining what was going on and the emotions the characters were feeling. Having taken one of the Sound of Music tours on a visit to Salzburg years ago. I also reminded her of the places we had seen when we were there. I was pleased when she seemed to be engaged from the beginning, but how long would it last? The answer? Until it was time for us to turn out the lights.

The following night we began where we left off – with the scene outside the gazebo where von Trapp and Maria express their love for each other. Kate didn’t say a word, but she was touched by it. She took my hand and held it firmly. It was a beautiful moment for the two of us.

I know that she didn’t understand many of the things that happened during the movie, but it was clear that she experienced the same feelings that millions of other viewers have had while watching this movie.

After that success, I risked being disappointed by watching it again this week. It worked again. The first night, she enjoyed it just as much as last week, but she was tired last night. We’ll finish it tonight. I’m encouraged by her response. She’s always liked My Fair Lady and Annie. I might try one of them sometime soon.

Success With A Movie

Until the past three years, movies played an important part in our lives. That increased after Kate’s diagnosis. Movies weren’t just an amusement. I looked at them as a significant part of our therapy. For at least the past five or six years, she hasn’t been able to follow a plot. As a result, she didn’t understand what she was watching. She could, however, enjoy movies that connected with her intuitive abilities. She responded well to characters she liked or to situations she could appreciate.

As her disease progressed, she experienced greater difficulty getting any pleasure from movies. Despite this change, she enjoyed a number of movies during the past year and a half, RBG, Darkest Hour, Won’t You Be My Neighbor?, and Linda Ronstadt: The Sound of My Voice. The Ronstadt documentary was the last of our successes. I hadn’t tried any new movies since Ronstadt’s until yesterday.

The new Tom Hanks film, A Beautiful Day in the Neighborhood, has received a good bit of publicity. When I first heard about it, I thought it might be worth trying. The fact that she had enjoyed the documentary made me think this one might work. On the other hand, I had also learned that this was quite different from the documentary. That made me wonder if she would like it. Ultimately, I thought it was worth the risk.

As it turned out, I had nothing to fear. Although it has an underlying plot, I believe the success of the film rests largely on communicating its message in a way that Kate could appreciate. In fact, I suspect that most people who like the movie like it for the same reasons that Kate and I did.

The characters’ spoken words played a part in communicating the film’s message, but the tone of their voices, facial expressions, and body language are at least equally important. Hanks mastered the slow way that Rogers expressed his thoughts to children. In this movie, he speaks the same way to adults. In addition, the film was at a pace that Kate could grasp. I believe all of these things were important in making this movie a success for Kate and to me as well.

In other words, this was a successful film experience for Kate because it communicated to her through her intuitive abilities. I’ll continue to keep my eyes open for others that may do the same. That can be difficult. All movies attempt to capitalize on people’s emotions. I also need to keep in mind the kind of emotions a film elicits. There are many that Kate would not like, but It’s a Beautiful Day in the Neighborhood was a clear success.

My Thoughts on Kate, Movies, and Intuitive Thought Processes

Several days ago, I suggested that there are some aspects of a film Kate is able to appreciate without understanding the plot or exactly what is going on. Until a year and a half ago, I realized that she could still have feelings for the characters and their situations. That is true, but I feel I understand it more clearly since I read The Dementia Handbook by Judy Cornish. I’ve talked about Cornish’s description of rational and intuitive thought or abilities many times and won’t repeat them here, but I think they apply beautifully with respect to Kate’s response to movies.

Her rational thought processes simply don’t work very well, but the intuitive part of her brain is still alive and in some ways is more active now than before. The power of any movie comes from its ability to touch us by what we hear, see, and feel. Like other films the Ronstadt documentary is loaded with these qualities, and Kate enjoyed the movie.

There is one other thing, however, that I believe is relevant in explaining Kate’s response: the fact that the film is a documentary. Why should that matter? Here is what I think. Although Kate’s rational abilities are virtually gone, she retains a desire to know or to understand. I think this is true for everyone. Part of our intuitive nature is to make sense of (to understand) the world around us. We see this most easily with young children. They seem to be interested in everything.

Kate was an English teacher and then a librarian. Learning and education have always been important to her. She still believes it is important to understand things, but no longer has the ability to do so. She often asks me to help, but almost as often I find it difficult. That’s because my explanations generally rely on the rational abilities she no longer has.

The nature of a typical documentary is to present information about a subject, but it “packages” that information in a way that not only appeals to our rational thought processes but also to our intuitive ones. This approach to presenting information is more appealing to a wider audience than a lecture or reading an article or book on the subject though it may fail to include many details and subtleties of a more academic format.

Documentaries like RBG, Won’t You Be My Neighbor? and Linda Ronstadt: The Sound of My Voice are designed to reach an even wider audience than the typical documentary. They seek to be more entertaining by presenting their information with a greater emphasis on the qualities that appeal to our intuitive nature. I believe that is why Kate has enjoyed these three movies. She has a sense that she was learning while at the same time being entertained. I hasten to add that doesn’t mean that she would like every documentary designed for the mass market. We saw Pavarotti. She didn’t enjoy it, and I don’t know why. She likes opera and YouTube videos of him. I may have to see  it again to figure out why.

Success With a Movie

Movies have always been an important source of entertainment for Kate and me. They were even more important during the early stages of her Alzheimer’s. It became increasingly difficult, however, for her to enjoy them because she couldn’t understand the plot or what was going on in the different scenes. That led me to become more careful in the movies I chose. I discovered that she could enjoy some movies if she liked the characters and they didn’t contain any depressive content. I focused on uplifting films.

Occasionally, I would try something that looked doubtful. Once in a while that worked. The best illustration is Darkest Hour. That would seem to be one she might not like. I knew, however, that she had always taken an interest in books and movies about World War II, especially those that dealt with the Holocaust. Although she couldn’t follow everything that happened, she was taken by it. At that point, she remembered Churchill and WWII. She understood the subject matter was serious, and she appreciated the acting.

After that good experience, I had a series of failures; however, I struck gold with RBG (saw it twice) and Won’t You Be My Neighbor? (saw it four times in four weeks). Two days ago, I received an email from our local arts theater that Linda Ronstadt, another documentary, was opening this weekend. I read a little more about it and learned that it is a “feel-good” movie. That cinched it for me. I really hadn’t followed Ronstadt’s career, but I had two of her CDs, ‘Round Midnight and Canciones de mi Padre and was always impressed with her success across so many musical genres.

I still had some concerns about how Kate would respond. I knew she wouldn’t remember Ronstadt although she has enjoyed Round Midnight for years including the past week, but I thought it might be worth trying. I’m glad I did. Kate enjoyed all of the film but was particularly moved during the last part when it dealt with her Ronstadt’s Parkinson’s. At that point, she put one arm around mine and held my hand with her other hand.

As we walked out, she said something she almost always says when leaving a movie, “you’re gonna have to explain this to me when we get home.” She couldn’t grasp what was happening, but she enjoyed the movie anyway. How do I explain that? I’ll try to do that in my next post.

My Experiment with Another Movie

For most of our marriage, especially before having children and after they left home, Kate and I have enjoyed movies. It was natural to include them among the variety of priorities on which we focused after her diagnosis. We found the best selection of movies at a local arts theater and have been members for many years. As Kate’s Alzheimer’s progressed, she was no longer able to follow a plot. At first, I thought that might be the end of movies for us. I discovered, however, that she could still enjoy some of them without understanding the plot at all. I was surprised but soon recognized what is obvious that there is more to a movie than a plot. Movies grab their audiences with a host of emotions that we experience directly by our senses of sight and hearing. We can enjoy the appeal of the characters, the beauty of the scenery, visible forms of humor, and music.

For Kate, enjoyment was heavily influenced by the nature of the characters and the seriousness or importance of the film’s focus. She liked upbeat movies with likeable characters. On the other hand, she liked more serious films like Darkest Hour. In that case, she was able to recognize the seriousness of war and its impact on the world. At the time, she also recognized the importance of Churchill. The whole tone of the movie appealed to her.

The last two movies that appealed to her were documentaries, RBG and Won’t You Be My Neighbor. We saw RBG twice and Neighbor four times. She had a strong positive feeling for each of them even though she didn’t remember them before the movies. In addition, she could sense they had led lives that had great impact.

Our moving going had already tapered off before those films. After that, I tried one or two movies without any success. She was confused and bored. I have been looking for what I thought would be the “right” movie since then. That occurred two weeks ago when I learned Pavarotti was playing. Kate has been especially drawn to opera in recent years. I decided to give it a try yesterday afternoon.

While we were at lunch, I told Kate that we would be going to a movie. I told her it was a documentary of Pavarotti. She didn’t remember him even when I told her a little about him. For the most part I was not surprised. She is forgetting most names. Why not Pavarotti’s? On the other hand, he does come up periodically in our conversation, especially in connection with some of the YouTube videos we watch in the evening. We have watched a few of his solo performances as well as those with The Three Tenors. I guess I had hoped that she might recognize the name. If she had, I would have taken that as a sign that she might have an interest in the movie. That didn’t happen.

Once the movie began, I was very optimistic. I could tell she was interested. There were a number of emotional moments during the film when she and I were both moved by the music. She held my hand and squeezed it tightly. She enjoyed his singing, but there were also times when she said, “You’re ‘gonna’ have to help me with this. I don’t understand.” She repeated that when the movie ended. Instead of getting up to leave, I talked with her briefly. I asked if she had liked it. She said, “I don’t know. I didn’t understand it.” I suggested that the important part was that she liked the music. That didn’t make any sense to her either. I found this interesting. I was trying to get her to rely on her intuitive abilities, and she was focusing on her deficit of rational abilities.

All-in-all I have to give Kate’s experience “mixed reviews.” I had hoped that she would leave with a good feeling about having gone, but she didn’t. By the time we reached the car, she didn’t remember seeing the movie. I probably won’t take her to another one. I’ll add this to the growing list of things that we are dropping from our lives.

An Unusual Morning

It’s hard to know what to expect each morning. I do know that Kate sleeps later now than she did a year ago, but sometimes she surprises me by getting up early. I also know that she has always been “slow” in the morning. Over the past few years, she has also been a bit groggy when she wakes up. Sometimes she shows no signs of grogginess. That was true yesterday.

Just before 9:00, I saw that she had rolled over in bed and thought she was about to get up. I walked into the bedroom. She was lying in bed with her eyes open running her fingers through her hair. She gave be a smile as I approached the bed where I sat down beside her. We chatted a few minutes. She was in a good mood and seemed very clear-headed but wanted to rest a little longer.

Close to 10:00, I noticed that she was up and looking at the clothes I had put out for her. I went to see if I could help her. She didn’t seem as alert as she was earlier. She was trying to gather her clothes together to take them into the bathroom before showering. I offered to help, but she didn’t want help. She asserted her independence, and I let her.

I went back to the kitchen where I could watch on the video cam. She went into the bathroom and didn’t come out for almost thirty minutes. I thought she must have showered. I went back to her. She hadn’t showered and wanted to go back to bed.

An hour later, I tried to get her up. She wanted to stay in bed. I told her I would come back in thirty minutes, and we could go to lunch. When I returned, she still didn’t want to get up. She told me to go to lunch without her. I said I would feel uncomfortable leaving her. In a soft and gentle voice I said, “I’m ready for lunch and would love to take you. Why don’t you get up and come with me?” She agreed but didn’t want to take a shower. I decided not to push it. I started to help her get dressed, but she wanted to do it herself. I stayed in the room. She asked for my help once or twice.

Once she was up she seemed fine. We didn’t talk much on the way to lunch. I played some music that she likes. The lunch went well. She brought up her mother and commented that she looks like her. I reminded her we have her father’s family movies from the mid-1930s to about 1945 and asked if she would like to look at them when we got home. She liked the idea.

On the way home, she said she wanted to rest. She did just that when we got back. After an hour or so, I asked if she was ready to see the movies. She was, and we spent almost two full hours watching them. She needed help identifying people throughout the entire time. That related both to the quality of the films and her Alzheimer’s. The films were originally shot in 16mm, many in color. They had deteriorated a good bit before they were transferred to VHS tape and more recently to DVD. Her problem was more than that, however. The movement from one person to another made it difficult for her to know what to focus on. When I directed her attention to her mother or the few in which her father appeared, she could never see them. I would stop, rewind, and then stop again when her mother came into view. I am happy to say that she loved every minute of it. I thought that she might get tired. That never happened. She was captivated seeing her grandmothers, aunts and uncles, and cousins as well as her parents. She was especially excited seeing her mother along with the other graduates coming out of the auditorium and shaking hands with the college president after the ceremony. It is also fun to see Kate from birth to about four or five. We have lots of stills, but the movies are really special.

After the movies, we went to dinner at a Thai restaurant. It was unusually busy. Kate was amazingly patient and never expressed the first complaint about the delay in our food. That surprised me because she usually thinks it takes a while for the food to arrive at any restaurant. In fact, she often asks, “Does this place have food?” only minutes after we have arrived or ordered.

It was after 8:00 when we got home, so we didn’t have a lot of time before going to bed. Kate worked on her iPad. She continues to have more problems working her puzzles. That started last night when she had to ask my help just to open (lift the cover) the iPad.

On balance, we had a nice day, but the entire past week she has shown further signs of decline that I would rather not see. Continue reading “An Unusual Morning”

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.