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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.

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Yesterday’s Conversations

We had another good day yesterday with a couple of interesting conversations. After taking our seat at lunch, Kate asked where we were. I told her. Then she asked my name. I told her. She followed that with “What’s mine name?” I said, “You tell me.” She thought a moment and told me.

A few minutes later, she asked where we were again. I told her. Then I said, “We’ve lived here 47 years. As usual she was surprised and said, “That can’t be.” Then I told her we have a daughter who will be 50 in October. She looked even more surprised and said, “We have children?” I told her we have a daughter and son and gave her their names.

I also had a brief conversation with Mary, our sitter. When she arrived, I told her about Kate’s anxiety attack on Wednesday night. I just wanted her to know in case anything similar happened while I was gone. She told me she was impressed with how well Kate handles herself with people. She specifically mentioned how easy it was for her to make conversation with people she saw at Panera. She specifically noted how much she enjoys the children she sees. Although I often I talk about how well she does in social encounters, it was nice to hear it from someone else.

I’m happy to say that we had no signs of the anxiety that Kate experienced Wednesday night. The more I think about it, the more I believe that was the clearest sign of sundowning we have had. I hope it was the last but know it could happen again.

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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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Facing Reality

Yesterday began pretty much like most days. Kate’s sleeping pattern has been somewhat erratic. I started to wake her up just before 11:00 so that we might have lunch before the sitter arrived at 1:00. It took her longer to get out of bed than usual, but I didn’t think much about that.

I decided to go to Panera for lunch since we were a little late getting away. I called the sitter to meet us there. As soon as we sat down, Kate said, “Does this place have a name?” That, too, is not unusual. Then she asked, “What’s the name of this town?” I told her Knoxville and that we had lived here 47 years. She was as surprised as she usually is. She asked the same question several more times.

When Mary arrived, Kate seemed perfectly normal. When I left, she didn’t show any reservations about my leaving. When I returned home, Kate was in the back of the house. Mary said Kate rested a little while I was away. Although she had plenty of sleep the previous night, I wasn’t too surprised about that.

After Mary left, Kate was ready to go as well. We went back to Panera for about 30 minutes before going to dinner. When we got out of the car, she asked, “Where are we?” During dinner, she must have asked another five or six times. As we left the restaurant, she asked again. I told her again, and she said, “So, we’re not in Fort Worth?” I said, No, we’re in Knoxville. We’ve lived here 47 years.”

The previous night we had watched half of the movie South Pacific. We had enjoyed it. All the music was so very familiar. We watched the second half last night. Kate started out working puzzles on her iPad but became engaged in the movie. She put the iPad down.

When it was over, I started to get ready for my shower. A moment later, she had a look of concern on her face. She called my name, and I went over to her. She said, “I don’t know what’s going on. I don’t know who I am or where we are?” I’m unable to find the words to adequately express her emotion. It was a look of puzzlement or fear. This was different from simply asking her name which has happened a few times recently.

I said, “Let’s take some time to talk. I think I can help you. I could show you some pictures of your family. Would you like to stay here in the bedroom or go to the family room?” She wanted to go in the family room. We sat on the love seat. On the table was a photo book that her brother Ken had made with photos of their father’s family. I picked it up and showed her pictures of her grandparents. She didn’t remember them at all. She has gone through this album many times. I might have thought the photos themselves would have jarred her memory. They didn’t. A moment later, she said, “Why don’t you show me tomorrow when I am thinking more clearly.”

I put the book down. I looked at her and said, “Can you tell me how you are feeling?” She said something like, “I don’t know. I just don’t know where I am and what’s going on.” I said, “Are you afraid?” She said, “No.” I asked if she was confused. She said, “Yes. I just don’t know what’s happening to me?” At that moment, and right now as I write, tears welled up in my eyes.

We haven’t spoken about her Alzheimer’s in years. It isn’t something she has wanted to talk about. Recently, I have wondered if she even remembered that she has the disease. Over the years, I had decided there was little reason for me to bring it up. Faced with this particular situation, however, I said, “What you are experiencing is caused by Alzheimer’s. It’s a natural part of having this disease.” Very calmly, she said, “I knew I had it, but I haven’t thought about it in years. I had forgotten.”

I didn’t go on to say any more about Alzheimer’s. Instead, I said, “I want you to know that I will always be here for you.” She said, “I know that. I’ve never doubted that.” She went on to say how fortunate we are to have had such a good marriage. As she often does, she also said how fortunate we are that our children have turned out so well.

I reminded her that we have been married 55 years and said, “During that time we have had so many great experiences.” She asked me to tell her some of those experiences. For the next fifteen minutes or so, I talked about the places we have lived and the special things we have done. We both enjoyed having this moment of reflection. It wasn’t that we don’t reflect. We do that a lot. In that moment, however, it seemed more special than usual. When we finished, seemed seemed more relaxed though probably still confused. I think we both felt comforted by our conversation.

Over the course of the past six months or so, Kate has been on a gradual, but noticeable, decline that is a sign of what will be the hardest part of our journey. Her experience last night brought the harsh reality of Alzheimer’s to the forefront of our lives. We have lived as if this day might not come. I knew it would, but it’s painful to watch someone you love go through it.

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Surprising Memories

Kate’s memory has declined so much over the past few months that I am surprised when she remembers almost anything. That happened twice yesterday. The first occurred on our way to lunch. Only minutes after asking me the city we were in, she said, “Madison (WI) changed my life.” I was surprised for two reasons. First, that without my saying anything to prompt her, she remembered Madison where we had spent three years while I worked on my PhD at the University of Wisconsin. Second, that she was able to express a truth about our time there. It changed both our lives in significant ways. The first two years she worked as a secretary to the director of graduate admissions in the English department. He was an outstanding scholar, and Kate had an undergraduate degree in English and had completed all but her thesis for her master’s in English. She came in daily contact with professors that were well-recognized for their contributions to English literature. She was in heaven.

The other memory occurred after lunch. At Carla’s we have a single scoop of salted caramel gelato each week. We love it. For Kate each week is like the first time she’s ever eaten it. That was true again yesterday. She raved over it while we were enjoying it and after it was gone. Time passed as we got our check and paid it. Then as we walked toward the car, she said, “That was the best ice cream.” That may not seem unusual, but it really surprised me. She’s never commented like this about anything we’ve eaten before. It obviously made an impression on her. When we were almost home, she again mentioned “the ice cream.” I was doubly surprised and happy. It is very special when things like this happen.

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There ARE humorous moments.

In the car on the way to lunch today, Kate said, “What city is this?” I said, “Knoxville, Tennessee.” A couple of minutes later, she asked again. I said, “Knoxville, Tennessee, where we have lived for 47 years.” She was surprised as she always is when I tell her this. She said, “I guess that means I’m old.” Though I am only six months older than she, I said, “Think about me. I’m 78.” With a smile on her face she quickly responded, “Well, you’re ancient.” She still has her sense of humor.

While we were at lunch, she asked me at least three more times where we were. One of those times was immediately after I had told her. A similar thing happened on the way home after lunch. She asked me to tell her my full name. Right after I said it, she said, “Say it again.” I did and then asked her to say it. She got the first name but was stumped on my middle and last names. She didn’t express any frustration. She just laughed. I laughed with her. Of course, it’s really sad, but it feels good to laugh, especially when she initiates it.

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A Mother’s Love

I got in bed last night about thirty minutes after Kate. That’s rather typical. Sometimes it’s a little longer. She was still awake and said that she had been waiting for me, wondering what I was doing. I had been reading in my chair right beside the bed. Until the past few months, I had been going in the family room and reading so as not to disturb her. When I discovered that left her feeling alone, I started reading in the bedroom. Since I read from my iPad, I have no trouble reading in the semi-dark room. Even though I am nearby, I find that she feels better when I finally get in bed with her.

After snuggling up close to her, she said in a very childlike way, “Tell me about our children.” I did. We talked a few minutes more and she again said, “Tell me about our children.” It was like a child who wants her mother to tell her favorite story once again. Over the past 4-6 months, I’ve grown accustomed to her asking me to tell her our children’s names or sometimes asking “Do we have children?” This was the first time, however, that she has asked in this way, and it opened my eyes to a reinterpretation of her asking.

She asks me other people’s names continuously throughout the day. That almost always occurs when I have said something like “Today we are going to see the Robinsons.” Her typical response would be “What are their names?” When she asks our children’s names, it isn’t usually prompted by anything I’ve said. For example, we may be driving in the car, not even talking, when she says, “What are our children’s names?”

At first, I interpreted her questions as a simple request for information. I also wondered why she seemed to ask about our children’s names as much or more than other people’s names. She should have been able to remember them much longer than those of others.

Last night when she said, “Tell me about our children,” I don’t think it was because she is simply forgetting their names like those of everybody else. It’s precisely the opposite. Her many unprompted requests for their names is because they do matter so much to her. She loves them dearly. They are precious to her, but their names are slowly slipping away. It’s her “mother’s love” for her children that is prompting her questions.

In addition to forgetting their names, I am sure she is forgetting most of the things about them. She hasn’t forgotten her feelings for them, however. She is doing her best to hold on to the last memories she has of them. I intend to do my best to help her.

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Update on Sitter

Last Monday, Kate didn’t seem eager for her sitter. When I got home, Anita told me that Kate had been very quiet and not herself. Since I knew she was fine during the morning, I was concerned that we might have a problem with the relationship between Kate and Anita.

Kate got up late this morning. I had to wake her in order to get her lunch before leaving for my Rotary meeting. As I have done at least once before, I gave her the option of staying in bed and having Anita take her to lunch or going with me. She wanted to go with me and got up quickly. She met me I the kitchen when she was ready and asked how I was doing this morning. I said, “Just fine now that you are here. I love you.” Using her hand signals, she conveyed that she felt the same way about me. As I backed out of the garage, she said, “Tell me your name.”

We were running late, so I asked Anita to meet us at Panera. When I saw her walk in the front door, I told Kate that Anita had arrived and that I would be leaving for Rotary. She gave me a concerned look and said something that I interpreted to mean that she didn’t see a need to have someone stay with her. Then Anita walked up to the table, and Kate greeted her warmly.

When I returned home, everything seemed fine. They were both in the family room. Anita had the TV on. Kate was on her iPad. I walked Anita to the car and asked how things had gone. She said Kate was fine today. When I walked back inside, I asked Kate the same question. She also thought things were fine.
I did point out a photo album that Kate’s brother Ken had made for her. Anita said she had not seen it. I suggested that next Monday she have Kate show it to her. I felt better today than I did last week but will continue to be sensitive to any potential issues that arise.

As usual, Kate was ready to leave the house after I came home. Before leaving, she asked, “Where are we?” I told her we were at our home in Knoxville. She went to the bathroom. She asked the same question again. She asked again before we got in the car. She asked another three or four times before we got to Panera where I got her a bagel.

She was very tired at dinner and immediately got in the bed and under the covers when we got home. I let her rest for almost an hour. Then I suggested that she might get up so that she would be able to get to bed at her usual time tonight. She got up quickly and is now working on her iPad.

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Update on Salivation Issue

Two years ago this fall I heard Kate burping when she took her medicine. It wasn’t something she did all the time, just periodically. I’ve heard it even in the past few days. It hasn’t been a big issue, but a short time after it started, I noticed that she was wiping saliva from her lips. She used almost anything she could put her hands on. In restaurants, that was mostly napkins. In those restaurants with paper napkins, she would have used her original napkin as well as the small napkins under our drinks before the meal arrived. We regularly ask for more napkins. That was how she began bringing them home and depositing them in a basket in our garage. At home, she used toilet paper and lots of it.

I spoke with her doctor about it. I told her that it did not appear that she was having a reflux problem. It seemed like she was just not swallowing her saliva. When I talked with Kate about it, she found it repulsive to swallow. I was able to get her to try it, but she would never continue.

Despite my sense that it wasn’t a reflux issue, we began to think about the burping. The doctor thought it might suggest reflux after all. She had been on a reflux medication for a couple of years or so. The doctor recommended several ways we might address it. We started by increasing her reflux medication. Then we tried an antihistamine. After that we tried another medication that is supposed to reduce salivation. Nothing worked.

A few months later, her doctor accepted a medical director’s position in a clinic offering free medical care to those who need it. Kate’s new doctor prescribed another medication that reduces salivation. That didn’t work. Finally, we went to a gastroenterologist. He couldn’t find any physical reason for her problem. He did, however, say that as we age we seem to accumulate a little saliva in our throats. He thought that might be causing her not to swallow. We decided to live with the problem. Later, her dentist told me she had observed this among a lot of her older patients.

My update today is to say that the problem continues. She still goes through lots of napkins and paper towels. I keep a supply of both in my car. If we have any extra paper napkins at a restaurant, I am quick to take them to the car for when we need them. I often keep a couple of sheets of paper towels in my pocket. When she doesn’t have a paper product, she often uses her hand. Then she wipes the saliva on her clothes.

I know that she does swallow sometimes. One day at Barnes & Noble, I watched her for a while. During that time, she never wiped away any saliva. As recently as the past week, I also noticed a short time when she was swallowing; however, those are infrequent occurrences. I would like to think this is a problem that will just go away, but it doesn’t look like it.

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Feeling Grateful on Father’s Day

When we get to a certain age (not sure when that is, but I must be there), we begin to reflect a bit on our lives, people we’ve met, things we’ve done, places we’ve been. That takes us to how we feel about ourselves. When I do that, I always think of one word that sums it up for me – Grateful. Yes, I am grateful for many things.

I’m grateful to be alive. When I was twelve and some time thereafter, I thought 60 was very old. I knew that I would never live that long. That bothered me because I wanted to live to see the turn of the century. When I was older, I no longer worried that I wouldn’t make it. I was still here. When my dad celebrated his 100th birthday in 2013, my optimism about my longevity took a leap forward. Now it’s 2018, and I don’t believe I am likely to depart this world anytime soon. I am very mindful, however, that life is uncertain. Kate’s diagnosis with Alzheimer’s in 2011 keeps that in the forefront of my mind, but I am very grateful to be here today and enjoying life.

Since it is Father’s Day, I also feel grateful for my dad. Although I never remember his giving me any advice or admonition about making the most of life, he was a significant role model for me. He had a much harder life as a child than I did yet he never complained. He was always optimistic. I could tell by observing how he dealt with problems that he saw life as involving recurring challenges. His job was to figure out how to conquer them. He loved life and the people he encountered along the way. They loved him back.

Kate and I are both grateful for our families. That includes our extended and immediate families. We have two children who have successfully found their places in the world and are raising children that we expect to do the same. Kate and I want to minimize their responsibilities in caring for us, but I know there will be plenty near and at the end of our lives. I am especially grateful for our daughter’s and son’s skills and sensitivities about the aging process. We will be in good hands.

I am grateful for the opportunities I’ve had to experience the world. That began with educational opportunities but extended to life experiences in different places with different people. I never imagined what lay ahead of me when I left for college. Those experiences have had a tremendous impact on my view of the world.

Many people have influenced my life. Of course, that would include teachers, but goes much further to include people I have studied with, worked with, played with and encountered in brief encounters in everyday life as well as international travel.

As I think of people who have been important to me, I naturally think first of my partner in life, Kate. We’ve often talked about how unlikely it was that a beach boy from Florida would meet up with a Texas gal almost 1500 miles away. We came from very different kinds of families and backgrounds. It turns out that we have shared values and interests that have lasted us a lifetime. My dad couldn’t understand why I wanted to go so far away from home when there were plenty of good colleges and universities in Florida. I loved my family, but I am glad I left for a new adventure. My mom said, “You’ll go out there and meet a Texas girl and never come home again.” She and I were both right. It worked out well.

Kate’s diagnosis with Alzheimer’s wasn’t in our game plan, but we quickly decided we would make the most of our time. I am satisfied that we have done that, and we’re not finished. Even as her memory fades, we are enjoying life and each other. She lives in the moment, and I am living with her. That is what I am most grateful for this Father’s Day.