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Latest Doctor’s Appointment and Opera Night

Kate’s getting up earlier helped to make the day go smoothly yesterday. We spent about an hour at Panera before going to lunch. Then we had just enough time to drop by the house to brush teeth before going a routine doctor’s appointment for Kate. This was an uneventful visit. Dr. Reynolds asked Kate how she was doing and if there were any special things she wanted to report. She didn’t have anything. That, of course, is not surprising. Even if she did, she probably would have been unable to remember it. I did mention that she had been sleeping later in the day but didn’t think we needed to do anything special to counteract that. I told him we had continued to keep up an active schedule. He asked that I drop the Ibuprophen I had been giving her. He doubted that the low dose I was giving her (one tablet in the morning and one at night) made any difference at all. I had also cut back on her acid reflux medication. He said it is best to continue as it was before.

From the doctor’s office we stopped by Barnes & Noble for an hour and a half. Then we came home and changed clothes before going to opera night at Casa Bella. I got Kate’s clothes for her. After I had changed, I went to check on her. She was wearing a pair of black pants I had given her but had not put on the top I picked out. I found it in the bathroom and brought it to her. She put it on. As she did so, I noticed that she had put the black pants on over the tan ones she had worn all day. I decided not to say anything. A few minutes later, I saw her going through a drawer in her bedside table. She took out a small plastic container that had several ball point pens. She also found a glove and put it in the tray as well. She took it with her to the car. We were off to Casa Bella.

As Kate started to get out of the car at the restaurant, I noticed that she was about to bring the pants she had brought to the car earlier in the day. I told her I thought she could just leave them in the car. She accepted that without a question. It has been a good while since she has expressed any reservation about following any suggestion I make. I feel this is further evidence of increasing sense of dependence on me to know what it best.

The evening went well. A new couple sat with us and the couple we always sit with. We had a good time getting acquainted. At one point, the wife asked Kate about her work. She said she was retired and had been a teacher. The husband asked her where she taught. She was stumped and said, “Around Tennessee.” I interjected and gave the names of the schools. The wife asked her what she taught. She was unsure what to say. Once again, I spoke up for her and said that she had been an English teacher and school librarian. The rest of the evening went smoothly. It had been another nice day.

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A Day of Names

Kate frequently asks me to tell her my name and the names of our children and grandchildren. Yesterday was different in that it occurred so much. I suspect if we hadn’t had a sitter in the afternoon she would have asked me more times. As we left for Panera yesterday, she said, “What is your name?” She asked again at Panera. She also asked, “Where are we?” That is something else that occurred more often than usual. I often answer, “Knoxville where we have lived for 47 years.” She always expresses surprise about the number of years. This happened several times yesterday. A few times were so close together that even I was surprised she had no recollection of how long we had lived here. She also asked me where she was born.

When we got into bed last night, she said, “Do we have children?” I said, “Yes.” She said, “Two.” She asked me to tell her their names. It was said as if she were testing me and not seeking information for herself. It was clear as we talked that she really couldn’t remember. In a few moments, she asked me to tell her the names of our children again. Then again in another few minutes. When I tell her, she almost always follows that by saying how proud we are of them.

She asks the names of our children far more than any other names. As I have noted before, I take that as a measure of a mother’s love. She loves them dearly and is trying to hold on to their names as Alzheimer’s ravages her brain.

Perhaps because she has slept late recently, she has been quite talkative once we got into bed the past two nights. Her conversation (as it does during the day) focuses on the things she can remember – her mother and father, our marriage, and our children. She finds comfort in talking about these things. She talks mostly about our marriage, about our being well-matched, about our being meant for each other, that she would marry me again if she could, and that we have been so fortunate. I share her feelings. It makes me think of my parents and her parents. It was the same with them.

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I see the coming of a new morning routine.

Once again, I had to wake Kate this morning; however, it was a little easier to get her up than yesterday. Once again, to save time we went to Panera for lunch and got back just before the sitter arrived at 1:00.

Up until now, I have thought of her sleeping late as erratic. In fact, that’s what I said in the message to her doctor just yesterday. It now looks like we are in the process of a fundamental change in our normal routine. I have a feeling of regret about this. I feel for her as I know this signals a new stage of her disease.

I also feel for myself because it means reducing my own social contact. It’s been over two weeks since I saw one of my favorite acquaintances at Panera. For the past two or more years, he and his wife and Kate and I have shared a few moments of conversation almost every morning. He and I are quite different politically and religiously, but we both enjoy social contact and conversation. Both of us like to talk, but each gives the other a chance to speak. I miss him.

In some ways, I wish I had a sitter for the morning rather than the afternoon. The problem is that neither of our sitters is available for those hours. In other ways, it’s probably a good thing for me to have a block of time to myself. There are household responsibilities that I could take care of. I know I won’t have any problem finding productive ways to occupy my time. As time goes by, I might very well see that simply relaxing would be a productive way to take care of myself. Of course, I will also increase our in-home care. When that happens, I will be freer to get out.

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The Interplay of Kate’s Rational and Intuitive Abilities

There are many things that Kate has forgotten. Most of those involve her rational thought processes.  I’ve often mentioned that the names of people and places probably top the list. This doesn’t mean that they are permanently forgotten. That depends on how well she has known the people or places before and how often she is still in contact with them. Names of people she hasn’t see in a while are gone though she often recognizes the names when I bring them up. She doesn’t always remember our children’s names or that we even have children. As I have said before, she sometimes forgets my name and her own. The same goes for all of the restaurants we visit on a weekly basis. We have eaten at Casa Bella for at least 45 years, but she usually fails to remember the restaurant’s name. She no longer remembers that we live in Knoxville. The same is true for her hometown of Fort Worth.

As I said in a post a few months ago, forgetting a person’s name doesn’t mean that one has forgotten the person. People with dementia continue to hold many of the feelings they have for people. Our emotions, which arise from our senses, continue to guide us in situations where we can’t remember the associated names. This involves intuitive abilities. I recall my mother’s telling me she didn’t have a family. I asked about her son. She told me she didn’t have a son, she responded to me in just the same way she always had. I can hear her now when she said, “You’re such a nice boy. You always were.” You may be thinking, “This doesn’t make sense.” I would say there is much that doesn’t make sense from a rational standpoint.

Despite the weakness in her rational thinking, Kate still thinks at least some of it matters. For example, several months ago when I mentioned the film Darkest Hour., she wanted me to tell her about it. When I said it was a WWII movie in which Churchill played a major role, she wanted to see it. She loved the movie, but I know she couldn’t have understood much of it. I am equally sure that she was able to experience feelings about it. She knew it was about the war. She still has strong feelings about historical events and people even though she would never remember the names or events without any prompting.

Last night while I was watching the PBS Newshour, she worked jigsaw puzzles on her iPad. Late in the show they had a segment on sex trafficking. As they talked with parents about their daughters who were victims of this crime, she audibly reacted with disgust. She wasn’t even watching the TV. She was sitting across the room eyes focused on her puzzle. Her ears picked up the audio, and she understood enough to react to it.

Another way in which she seeks to stay in touch with rational thought occurs on a daily basis. She asks me to tell her the names of people and places. She feels it is important to remember. She rehearses them, but they are quickly gone. When I have the news on in the car, she frequently asks me to explain what they are talking about. This is a big challenge because most of my explanations are delivered in more than a sentence. Before I get to the point at the end, she forgets what it was that came before. Thus she doesn’t understand what I am saying. Then that I do what I should have done to begin with. I try to express in a single, simple sentence what the issue is. That takes care of it. My point is that she still has an interest in things that are happening in the world and around her. She tries her best to understand and remember. I feel that that she can’t ever achieve her objective. Fortunately, she doesn’t appear to experience much frustration over it.

She is trying very hard to be more organized. Most of this involves getting out the clothes she is going to wear. Often this occurs before she gets ready for bed as she did last night. She walked into the bedroom with pants, two tops, and a pair of shoes. I noticed that she didn’t have a night gown and asked if she would like me to get one. She did. When I brought it to her, she put it in her arms along with the pants, tops, and shoes. Then she asked in a whisper, “Are we staying here tonight?” She has asked this question quite a few times before. It illustrates a breakdown in her rational thought. At the same time, she is working to be more in control of her life which requires her rational abilities. It is common for her to take the clothes to the bathroom where she takes her shower and forget she has done so. Then she goes to her closet and gets something else.

A related example is her desire to create photobooks of our family like the ones her brother Ken has done. She hasn’t done any actual work on a book in more than two years. On the other hand, it is not uncommon for her to tell people she is working on them. Frequently when I mention something that we have experienced during our marriage, she will say, “Remember that. It goes in the album.” It is something she remembers and has a strong desire to do. It also requires a lot of rational thought to accomplish that task. She will never make her album, but I think she gets some satisfaction by thinking of it as an ongoing project of hers.

As I hope you can tell, there is still much about Kate that is like it was in the past. She wants to live as she did before, an impossible challenge.

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Some things disappear. Others show up. Kate’s esthetic ability is still working.

It has been seven and a half years since Kate was diagnosed. Over the past four years or so, a lot of things have disappeared. Some things have re-appeared. Others have never turned up. Occasionally, things that have been intentionally stored away have suddenly appeared. That happened just yesterday.

Late in the afternoon or after we returned from dinner, I noticed that there was a display of old catalogs on the table next to my side of the bed. I should have recycled all of them originally, but I had put them in a drawer of the table and quickly forgot they were there. Previously, I had a clock radio on the table. It had broken, and I disposed of it. The table looked pretty bare. It was obvious to me that Kate had gotten into the drawer and found the catalogs. She didn’t look at them as something to be thrown away. Instead she thought of them like magazines one might display on a coffee table in a family room.

As I was leaving the room, I noticed something else. She had found a basket of Christmas ornaments and put them beside a bench in our bedroom. She must have found them in a closet and was attracted by them. She wanted them where she could see them. That made me think of a couple of other things that have shown up recently. One of those is a change purse decorated in needle point. It has nothing in it, but she found it somewhere in the house and has been keeping it on the table by her bedside. Sometimes she takes it with her in the car. She found another one and does the same with it. I may have mentioned that she found a book that she must have liked. I know that I have seen her looking at the book cover, and she has taken the book in the car before.

This caused me to think about The Dementia Handbook once again. You may remember that the author distinguishes between our rational and intuitive (via our senses) abilities. Her main point is that we should deal with people with dementia by de-emphasizing the loss of their rational abilities and focus on their intuitive ones. The latter last much longer and provide the person with much pleasure.

This makes me look differently at her collection of things that have been in closets and on shelves. She still has much of her intuitive abilities. She appreciates beauty, and I think she sees beauty in lots of little things around her. Some of these are things that she purchased in the past. She is reconnecting with them. There is often little practical benefit to her now. She doesn’t carry money or ID to put in a change purse. She just thinks it’s pretty. That’s enough. She derives her pleasure from holding it, looking at it, and having it around. Although there are still mysteries as to why she was digging around the house for different things in the first place, I think I understand why she picks out some things. They are things for which she has a special feeling. That comes from her intuitive side.

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Another Day Without Panera (And we survived. )

As I reported in my previous post, Kate was slow to get going yesterday. We skipped Panera and went straight to lunch. We didn’t arrive at the restaurant until 1:50. It was after 3:30 before we got back home. We spent almost an hour relaxing in the family room when she said she want to rest a while. Shortly after that, our son, Kevin, called. I went in the bedroom to see if she would like to take the call, but she wanted to rest. That’s just one more change that is taking place. In the past, she would have jumped on the phone right away. Kevin and I must have talked 45 minutes or so. She continued resting another thirty minutes.

When she was up, it was already an hour past our typical time for dinner. I didn’t think that was a problem since we had eaten lunch so late. By the time we got home, it was 8:15. I decided not to watch another musical. We just relaxed a short time. She surprised me by putting away her iPad and going to bed right after 9:00. I had been afraid she would not be able to go to sleep after sleeping so late and then taking a late afternoon nap. I was wrong.

I wasn’t sure what to expect this morning. Not surprisingly, she was up early and was ready for Panera at 8:45. Most of the time she isn’t even up by that time. So here we are. That makes me happy. We should have plenty of time together before the sitter comes. We should not have to rush our lunch. I suspect, however, that she is likely to get tired and want to go home in another hour. That would be close to the time I would get her lunch. We’ll see what happens.

Upon arrival, I noted another change that is occurring. Typically, I set up her iPad at our table and then go to the counter to order and pay for her muffin and our drinks. She goes directly to the drink dispensers and returns to the table. I wait near the table until she has her drink before going to the counter. Otherwise, she doesn’t know which table is ours. Today she approached me and said, “Where do you get ice?” This is something she has been doing for years. Once again, I shouldn’t have been surprised. Recently, I had noticed some confusion when she was at the dispenser. I thought it was just trying to decide what drink to get. Now I think it must be all the all options she has. Like most dispensers, the ice is right among the various drinks. It can be confusing, especially to someone with Alzheimer’s. On one or two occasions, she has given her cup to me to get ice and her drink. This may become our new normal.

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Another Episode of Anxiety

We had a very nice evening last night. After dinner, Kate spent an hour or more looking through two of her photobooks. As in the past, it was just like seeing them for the first time. We followed that by watching the third of three DVDs of her family’s home movies and videos. This video had just as much impact as the first two. After that, she dressed for bed and then went to the bathroom. When she returned, I noticed that she seemed to be breathing heavily. Then she began to make audible sounds as she breathed. It was like, “Oh . . . Oh . . . Oh.”

We got into bed, and she said tearfully, “I’m sorry I didn’t get everything done.” I said with a soft, comforting voice, “That’s all right. You didn’t forget anything. There wasn’t anything for you to do.” She didn’t calm down immediately. I asked if she could take some slow, deep breaths and relax. That is something she does when she has an attack of acid reflux. I held her for a few minutes and began to talk about her family that we had just seen on the DVDs. That led to talking about our marriage and the good times we have had. In a short time, she relaxed.

I wish I knew what brings on these attacks. This is the third one in the past two or three weeks. Each time it seems to occur without my being able to connect it with anything specific. The fact that she apologized for not doing something suggests she imagined my asking her to do something that she didn’t do. I think I’ve mentioned before that she really wants to please me. That has caused me to try not to say anything when she forgets to get ready to go somewhere or wear clothes I have picked out for her. It makes her feel bad.

Each time something like this happens, I wonder what the future holds. That is truer now than a few months ago.

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More Confusion

Kate got up from her nap right after I uploaded the previous post. She was ready to get out of the house, so we drove over to Panera. On the way, she asked me to tell her my name. Then she asked me her name. After I said Kate, she filled in the rest. Then she asked my name again. She tried to repeat it and couldn’t. When we got to Panera, she asked the name of the restaurant. Several times over thirty minutes she asked again. She also asked my name again as well as her own. Then she asked my parents names. I thought it was strange that she wasn’t working on her puzzles. I always set up the iPad with a puzzle that is ready for her. Apparently, she left the iPad inactive for so long that it went to sleep. After a while, I asked her why she wasn’t working puzzles. She didn’t realize she could. The iPad was sitting right in front of her. She hadn’t noticed or noticed and didn’t remember how to start it. I turned it on for her, and she is working the first puzzle, and we have been here almost 45 minutes.

Although she has asked almost all of these same questions other times, she seems especially confused today. Each time she asks for the same information, I get the impression that her lack of memory is troubling her. I hope we aren’t preparing for another anxiety attack tonight. As I said in my previous post, I hope the evening at Casa Bella saves the day.

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Alzheimer’s causes behavior that is hard to explain.

From time to time, I have mentioned some unusual (strange?) things that Kate does. I never do so with the intent of making fun but simply to report some of the things I am sure other caregivers are observing. It is also a way of giving a truer picture of what our lives are like. Thankfully, I am usually reporting more positive and normal kinds of things we are doing.

Yesterday I noted that I hadn’t found a pair of pants that she was wearing the previous day. They were somewhat nicer than her everyday pants from LL Bean. I try to keep them separate from the rest of her clothes so that she will have something appropriate to wear for more special occasions. My only update today is to say that I still haven’t found them. I am sure I will eventually. That is what usually happens. I just don’t know when.

I’ve also mentioned that she sometimes takes various things with her when we go out in the car. Yesterday when we were leaving for Barnes & Noble, she picked up 2 baseball caps she wears when working in the yard and an apron. She just threw them in the backseat of the car. That’s where they remain.

Today as we were leaving for lunch, she was carrying an extra pair of shoes and two pair of socks. I noticed that the shoes were brown and not the black ones I had put out for her. I asked if she would like the black ones. She said she would get them later. I walked back to our bedroom to get something else and picked up the shoes and brought them back to her. She put them on. Then we walked to the car. She was now carrying the shoes she had just taken off as well as the other ones she had in her hand. She brought them as well as the socks to the car. When I return home to relieve the sitter, I will take them as well as the baseball caps and apron and put them back where she got them.

I have to believe there was some signal in her brain that led to her thinking she should take them with her. I’ll never really know.

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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.