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Starting Slowly, but Hoping for a Strong Finish

In other posts I’ve noted that Kate has never been a morning person. Throughout our marriage, I’ve always been up much earlier than she. The exception was when she was working. Because of that we have never had breakfast together except when we are traveling. These days I let her sleep as long as she cares to. Over the past 2-3 months, she has been quite erratic. Yesterday and today, she has gotten up much earlier than usual. It was before 8:00 Sunday and today. When that happens, she gets sleepy and often wants to rest before lunch. Today she made it until after lunch.

Until we were just about finished with our lunch, she wasn’t ready to engage in conversation. I didn’t push her at all at Panera. I always let her take time to fully wake up before saying much. Sometimes she asks me not to talk during the 4-minute drive from our house to Panera. Before leaving for lunch, she is usually wide awake. That wasn’t so today. By the time we finished dessert, she was ready. As we walked out of the restaurant, she said, “You know, I love you more every day.” As I was saying the same to her, she said, “No, I really mean it.”

She still has retained a sense of humor. Yesterday at Panera, she had a problem with her iPad. The cover folds into a stand, but she can’t ever do it herself. Each day when we arrive, she fills her cup at the drink dispenser while I do it for her and open the jigsaw puzzle app. Periodically, she accidentally unfolds the cover. That is what happened yesterday. I saw her struggling with it and asked if I could help her. She said yes. Once I set it up, she said, “You can be irritating at times, but I really need you.”

This morning when I wondered if her slowness might relate to the kind of confusion that led to her anxiety attack the other night, I decided we needed something to give her a boost in the afternoon. I got online and bought tickets to see Won’t You Be My Neighbor? a second time. She is resting now, but I will get her up in another thirty minutes to leave for the movie. When the movie is over, it will be time for dinner. I would be very surprised if we didn’t end the day on a high note.

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Changes in Conversation

I’ve heard other caregivers express sorrow over the changes in everyday conversation with their spouses. I’ve had the same experience with Kate. During the first two years after her diagnosis, our conversation was pretty much the same as it had always been. Gradually, we talked less and less. I think two things accounted for the change. First, I’ve always been a bigger talker than Kate. My parents were incessant talkers. I think my brother and I were heavily influenced by them. Kate has always been able to handle everyday social situations with ease, but she doesn’t have the same drive to talk that my brother and I have. When Alzheimer’s entered her life, she became quieter. We would go long stretches with silence, something that is a bit of a problem for me. I also found that when I would tell her something I was excited about, she didn’t respond in the way she would have previously. Our conversations became one-sided. Even talkers need a little encouragement to keep talking. She just didn’t provide it.

The second thing that accounts for this change is that a lot of conversation relies on memory. In almost any conversation, we refer to things that happened or that we talked about previously. As Kate’s memory declined, she lost the information she needed to carry on a conversation. Each time I would start a conversation, she would be puzzled because she couldn’t remember what I was referring to.

As a result, we talked very little. I felt especially uneasy when we were in restaurants. She wasn’t bothered at all. She could go through a whole meal without saying anything. Frequently, she would close her eyes as though she was going to sleep. Sometimes I wondered if people thought we were having some kind of marital problem. Over time, I learned to accept this, but I still missed our conversations.

Looking back, I believe I was slower to live in her world than I should have been. When she talked, her conversation related to her family. She has a deep love and admiration for her mother. Her long-term memory was still pretty good. What I have only grasped more recently is that feelings last much longer than specific facts. Gradually, we have both evolved into conversations that involve our feelings about both of our families and about our lives in general. We reflect on our friends, the places we have lived, the things we have done, our travel, and other highlights of our marriage.

This change in focus has had a significant impact on our conversation. It is still quite different than before Alzheimer’s, but it is enjoyable for both of us. It depends on my initiating the conversation. I bring up as many different things about our marriage and our families as I can remember. That provides a wealth of topics. The good news is that we can keep repeating them, and they are always new to her. I try to keep the focus on our feelings for the events of our lives rather than simply the facts. The facts provide a way to bring back the feelings. I admit it doesn’t always work the way I had intended. For example, last night I brought up her visit to the Jeu de Paume in Paris with our daughter in 1973. I told her they saw somebody special. Kate’s eyes lit up. It turned out that she didn’t remember the experience itself or that it was Julie Andrews and her daughter they had seen. On the other hand, she enjoyed the story I told her. That is true for almost all of the things I bring up. It’s not a loss, however. She experiences them in the moment I tell her. It’s the way children enjoy the stories their parents tell them. This is working for both of us.

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Our Sunday

We had a nice day yesterday despite Kate’s appearing to be a bit more confused than usual. A couple of times I was concerned that it might evolve into the kind of anxiety she experienced this past Wednesday evening. Fortunately, that didn’t happen. She got up unusually early, just before 8:00. She was walking slowly down the hall from our bedroom wearing her robe as I went to check on her. I asked if she had just gotten out of the shower. She said she was just going to take one.  Then she asked, “Where should I go?” She was standing right outside the guest bathroom. I told her she could go there are to the one off our bedroom. She said, “I’d like our bathroom. Where is it?” She uses several towels, so I got a couple of extras from the guest bath and walked her to ours.

We surprised some of the regular customers at Panera. They are accustomed to our coming later. Yesterday we got there before a group from a nearby Catholic church. We had gotten there before they did. While we were there, Kate asked me to tell her where we were (both the restaurant and the city). She also asked about her father’s name as well as those of our children and grandchildren. This occurred again at lunch and at dinner. Asking these names is not unusual. It’s just that I sensed a bit of concern on her part about not remembering them. I may be overly sensitive because of her experience the other night.

What she remembers and forgets sometimes surprises me. In the car yesterday, she said, “Nineteen thirty-six” and nothing more. I guessed correctly that she wanted me to tell her the significance of that year. I said, “That was the year my parents moved to West Palm Beach.” She said, “That’s the year my parents got married.” She was absolutely right. She surprised me.

Yesterday afternoon, I asked if she would like to look at some of our old pictures. She said yes, and I picked out pictures from a trip to Spain and France that we took in 1973 when our children were 4 and 2. We were gone six weeks, and our son was still in diapers. I should add that they were cloth and Kate washed them by hand every day. When I mentioned the trip, she immediately said, “People thought we were crazy, but it was great.” That is something she has said many times when we bring up the trip. It is obviously embedded in her memory.

Then I reminded her that she and our daughter had seen Julie Andrews and her daughter at the Jeu de Paume in Paris while I was taking care of our son. She has talked about this experience many times over the years. Kate described how no one else was in the room but the two mothers with their daughters. Kate was careful not to invade their privacy but took great interest in how Andrews was explaining the art to her daughter. Kate wanted to tell Jesse that was “Mary Poppins,” but that was before she had seen the movie. Yesterday, when I re-told the story to Kate, she didn’t remember a thing about it. Three or four years ago, we had seen Andrews and her daughter at Chautauqua talking about a children’s book they had co-written. She enjoyed reliving her original experience with the two of them in Paris. Even that more recent encounter wasn’t enough to overcome the changes that Alzheimer’s brings with it. I was crushed.

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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.