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Sunday’s Lunch Conversation

Just a short note to say that Kate and I had another interesting conversation at lunch on Sunday. We ate at Andriana’s. Before we reached our seats, she pointed to a photo of Frank Sinatra. I told her who he was. That began our customary conversation about him. She asked if I had told her about the time she and her mother had eaten there. She hadn’t. No surprise. Her mother died before we started eating there. She pointed to a photo of Sinatra and proceeded to tell me that her mother looked it and asked who it was. Kate told her it was Sinatra. She said her mother was vaguely familiar with him. She told her about his relationships with women, and that was all her mother needed to know. They didn’t go any further.

It is interesting to me how much she is drawn to his pictures. There are other pictures and art work in the restaurant. The only other thing she has been curious about is a large poster of a bottle of Cinzano vermouth. Even that has only come up in the past six months. It came up again Sunday. She always wants to know what it is. I tell her, but, of course, it is impossible for her to remember.

Kate is at least occasionally aware that she frequently asks me about Sinatra. Yesterday she said, “I know I’ve asked you before. I don’t know why I can’t remember.”

Apart from Sinatra, we had another interesting, though brief, conversation. It grew out of something one of us said about our having grown up so far apart. That led to a discussion of how the choices we make can open or close doors for us. Before choosing to go to TCU, I had considered going to college in Florida where I grew up. Kate chose to go out of state her freshman year but returned home and to TCU for the rest of her college education. From there we talked about other choices that we and others make about our life styles and health and nutrition. This was not a deep conversation, but it was another reminder of the kinds of things that she is still able to do without a memory.

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Update on Sleep and Mood

It was a year ago that I first noticed a change in Kate’s sleep pattern. Until that time she went to bed early, generally about 8:00. In the morning, she got up between 7:30 and 8:30. Last spring, she started sleeping later. In conversations with her doctor, I took her off Trazadone. That enabled her to stay up a little longer, and she was more awake at lunch than before. In general, she still sleeps later. Recently, however, she has been more erratic in the time she gets up. Most days I wake her. I usually start that process around 10:00 or 10:30. Other times she surprises me by getting up early.

In the past week or so, she has gotten up earlier than usual. She was up before 8:00 Saturday. We arrived at Panera shortly after 8:30. That was two days in a row, and the third time we had been there in the past week. Prior to that it had been months since we had been there that many times in a week. A year ago, we went there almost every day.

What should I expect next? I don’t know. She was up early enough yesterday to get to Panera again, and she was upbeat. She appears quite normal until she asks a question that gives her away or until she encounters a problem on her iPad. For example, she was up before 8:00 this morning and wanted to take a shower. She seemed fine, but she asked where the bathroom was. I showed her. She was cheerful and related to me very naturally. I could have assumed that she knew me. As I helped her into the shower, she said, “What is your name?” I told her and left her in the shower.

When she was finished, she got back in bed. I sat down on the bed beside her. We chatted a minute or two. Then she said, “Who are you?” I said, “Do I look like someone you know?” She said, “I don’t know.” I said, “Well, do you think of me as friendly?” Again she said, “I don’t know.” I said, “The way you are talking to me sounds like you must think I’m friendly.” She hesitated and said, “Yes, I do.” I went on to explain that we are married and that we met at the home of one of her high school friends when we were students at TCU. That was the first moment that she seemed to fully accept that I am her husband. Despite these questions, she spoke with me as naturally as though she knew my name and understood that I am her husband. She did express surprise when I told her we were married, but she never looked confused. Only her words conveyed that. She was never afraid or concerned about not remembering who I am. She has only experienced an anxiety or panic attack a few times in connection with not knowing where she is or who she is. I am grateful for that.

I don’t know how long this will last, but it may not be long until she changes again. Right now, it almost seems like we are living as though she does not have Alzheimer’s. Of course, that is not literally so, but it is a happy time. We’ll enjoy these moments as long as it is possible.

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Yesterday’s Mid-Day Conversations

Before, during, and after lunch yesterday, Kate was quite talkative. Not just talkative but engaging in conversation that might surprise someone who knows that she has Alzheimer’s and that her diagnosis was over eight years ago. Even I was a bit surprised. It began in the car when I played a Louis Armstrong album, What a Wonderful World. I said, ‘Isn’t it ironic that he sang that song while most of his life he couldn’t even stay in the same hotels where white celebrities stayed.” She asked why, and I explained about segregation. That led to a conversation about the civil rights movement. I knew she couldn’t remember any details, but she did have a recollection of that period of time and had strong feelings about it. She couldn’t understand why life was so segregated. We talked about the integration of public schools and how frightened the first black children must have felt as they entered their new schools. She said, “We’ve come a long way, but there is still a long way to go.”

At the restaurant I ordered the same salad I get every Saturday. It has mixed greens that I like, but yesterday it was different. It was overwhelmingly one particular type. The good news was it was one I like. One of the first times I had the salad I asked our server what it was. She didn’t know and asked several other staff who didn’t know either. Yesterday we had a new server. I asked her if she knew what it was. She didn’t and said she would ask the kitchen staff. Before she got back with their answer (No.), I googled types of greens and thought it might be endive. Then I googled “pictures of endive.” Bingo! That was it.

That led to another brief conversation. I said, “That’s a good illustration of how many things we don’t know, but we encounter every day.” That made me think about the curiosity of little children and how quickly they learn about the world around them. I mentioned that to Kate, and she agreed. Then she went on to talk about how children touch or pick up things that are new to them. She also talked about their asking questions of their parents. It was fascinating to listen to her. Her memory for names and places is virtually gone, but she clearly retains a memory for some general patterns of behavior like those of children. It’s no wonder that people with dementia can get along for such a long time before others recognize the problem.

On the way home, she kidded me about something. Then she said, “I think I’ve been around you too long.” She obviously remembered that I joke a good bit. I said, “Do you know how long?” She didn’t. I said, “In two months it will be fifty-six years since we married, and we dated a year and a half before then.” She said, “And I still love you.” I said, “And I love you.” There was a pause as I thought about the fact that she hadn’t asked my name since she got up. I rarely test her, but I said, “And I bet you remember my name.” It was her time to think. She finally gave up and said, “What is it?” I said, “Richard.” Then she said, “Richard Lee Creighton.” It isn’t often that my first name is all the prompt she needs to get the rest of my name, but it worked this time.

In our conversations, I see what Kate can (intuitive abilities) and can’t do (rational abilities). I am grateful that we derive so much pleasure from the intuitive ones.

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Another Good Day: Two Victories

It’s been a year and a half since I engaged the services of sitters for Kate. From the outset I was concerned about her accepting them. She surprised me by doing so immediately. She was never enthusiastic, however, just accepting. As she has become more dependent on me, she has seemed more reluctant for me to leave without her. Recently, she has enjoyed being with both sitters. That continued yesterday when Mary arrived.

When she came in, I was in the back of the house. I heard Kate greet her. A few minutes later, I walked in the family room. They were chatting. It looked just like Kate was talking with a neighbor who had dropped in to say hello. She did say, “Where are you going?” when I told her I was leaving, but she was perfectly at ease. There was no sign that she was bothered. As on several other occasions, I left feeling at ease myself.

When I walked in the house later, I heard Kate say, “Perfect timing.” It turned out that she and Mary had just returned from Panera. Kate told me they had had a good time.  I considered this another victory. It has been months since she has let the sitter take her to Panera in the afternoon. Prior to that it was a regular event. I hope this continues. Before Mary left, Kate said, “Have you ever seen her drive?” I told her I had only seen her drive in the driveway. Then she told me what a good driver Mary is. This is a consistent pattern for her. She regularly talks about well people do things. It’s one of the things I like about her.

Even after Mary was gone, she repeated they had a good time and how much she likes her. That was quite a victory. I couldn’t have had a better welcome home. I’ll feel much easier the next time I leave her. Even though I hadn’t spent much time with Kate earlier in the day, I was ready to say it was another good day. The rest of the day also went well.

Last night was pizza night. When we got home, she said, “What can I do now?” I suggested we go to the family room and that she could look at one of her family photo books, work jigsaw puzzles, or look at her “Memory Book,” the three-ring binder I had put together with information about our families and memories of our lives together. She started with the memory book while I watched the evening news. In a while, she picked up a history of her family’s church in Fort Worth. It was published in 2001 on the church’s 100th anniversary and had been a gift to her mother. It’s a book of over 200 pages with normal type (small for Kate).

As she went through it, she was thoroughly engaged although she had difficulty reading it. I was still impressed that she continued to work at it for about thirty minutes. She could not have done this before her cataract surgery. I should add that she also needed my help. I was seated on the sofa across from her. Every few minutes she would see a photo but couldn’t read the type indicating the person’s name. Sometimes she could read a heading but couldn’t read the text. She finally reached a section she wanted to read and asked me to read it for her. For another thirty minutes, I read to her. Her interest never waned, but I don’t believe it was because of the content per se. Some of the things I read were about people she didn’t know at all. There were also accounts of committees appointed to conduct a search for a new pastor or construct a new building, but it was her family’s church, the church in which she grew up. I was touched to see the pleasure she enjoyed looking through it.
That has to count as another good day.

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What makes a day “good”?

Yesterday, I saw a tweet by someone who produces podcasts on dementia. She mentioned that she had interviewed someone with dementia in one of her early programs, and she was still doing “pretty well” a year later. That made me think about the way Kate is doing and my reports of “good” days. It’s hard for someone to understand what that can mean. Was her memory better? Was there less confusion?

If we went from couple to couple, we would probably find differences in what they call a good day. I also think there is some change over time. If yesterday’s experiences had occurred in the early years after Kate’s diagnosis, I would have considered it a bad day. It was another day when she didn’t know who I was when she got up. That never occurred until the past six to eight months. I have come to accept that now. The same thing would have had a dramatic impact on me in the early years.

More than anything else, I consider it a good day when Kate is happy. Yesterday she was very happy. She joked with me a good bit. I regret that I can’t remember all the funny things she said. She was upbeat all day. Nothing seemed to bother her. She wanted to sleep longer when I woke her, but she got up without objecting. We had a little time between lunch and her massage. I showed her the three-ring binder of information about her and her family and about our lives together. She loved looking through it. She wanted to nap about twenty minutes before leaving for her massage. She got right up when I told her it was time to go. After the massage and a hair appointment, we had a short period of time before dinner. She said she was tired and wanted to rest. I asked how she would feel if we went to dinner right then. She said she that would be good, and we were off again. That meant that she didn’t get to rest as much as she would have liked. I thought that was good, especially when she went to bed about forty-five minutes earlier than usual. That should make it easier for her to get up this morning.

I should also say something about her massage since she didn’t have a good experience last time. I think she had forgotten what a massage was like and was surprised and confused by what the therapist was doing to her body. Before yesterday’s massage, I suggested that the therapist approach her as though this were the first one Kate had ever had. I don’t know that that made a difference, but Kate was fine when we left. I suspect that she was in such an upbeat mood that she was able to deal with massage more easily.

You might think by what I have said that she is typically depressed or in a bad mood. That is not so at all. On occasion, she has both experiences, but they are infrequent and short-lived. The difference yesterday was that she was so unflappable and upbeat. I find it uplifting for me when she is that way. So a good day doesn’t mean she doesn’t exhibit the symptoms of Alzheimer’s. Her memory and confusion are not any better, but she goes about her day as though everything is all right. I try to do the same. I think we’re both pretty successful. We focus on what she can do, not what she can’t and feel grateful.

Like other caregivers, my primary goals are (1) to keep her feeling safe and secure and (2) to keep her happy. Yesterday those goals were met. It was another good day.

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A Pleasant Surprise

It’s been six weeks since Kate’s cataract surgery, and I see signs that she can see much better than she did before surgery. That would be no surprise for someone without Alzheimer’s. It is quite different for Kate who does have that disease. It was difficult to get a good test after the surgery, but it appears that from a physical standpoint her eyesight is about 20/50. That is impressive considering that she was legally blind in her left eye before the surgery.

The most striking indication that her vision is better is that she more frequently picks up something to “read.” What I mean is that she looks through periodicals. We no longer have any magazine subscriptions, but we do receive magazines from TCU. We have two on the table beside the chair she uses most frequently when she is in the family room. Since she can’t remember having looked at them before, she picks them up regularly. She doesn’t just look at the front cover. She goes through a good portion of the whole magazine.

Before going to bed last night, she asked me if we had anything she could read. I had to think a minute before remembering a three-ring binder in the family room. I put this together almost a year ago. I was motivated to do this by two things. First, was her brother Ken’s working on the “Big Sister” album of photos for her. Second, she has talked about doing a family album that contains information of our family and the things we have done. Frequently, she says to me, “That’s going into the album.” Or “You’re going to remember this for me, you know.” I created the contents of the binder with some of the kind of information she might like to have, but she hadn’t shown much interest in it.

A brought the binder to her and let her look through it. She was quite taken with it and spent about twenty minutes looking through it before going to bed. During that time, she wanted to show me what was in it and kept asking me if I had seen it. Sometimes she asked for help reading it. I was encouraged that she was able to read enough of it to understand it was personal information about her and her family as well as the two of us. That is a real breakthrough that is a direct result of her surgery.

She couldn’t, however, read it as well as I had hoped. The brain is the control center for everything we do. Alzheimer’s damages the brain in a way affects vision as well as just about everything else. The result is that Kate continues to have trouble seeing. It is very spotty, and I don’t have the scientific expertise to explain it. What I know is that she sees (notices) some people in a photo and not others. She does the same thing with a string of words. For example, last night she saw her grandmother’s name, Mary Katherine Franklin. She only saw “Katherine.” The only way I could get her to see “Mary” was to put my finger under the word.

I don’t expect this to change, but I do believe I can make it easier for her to read the information in the binder by enlarging the font. That would be easy. I may experiment with that today. This should give her another option to occupy herself besides her puzzles that continue to be harder for her to work.

So all-in-all her cataract surgery has been a success. I am glad we did it.

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Midnight Delusion

Over the course of her Alzheimer’s Kate has experienced a variety of delusions. Most notably that has involved a belief that our home was her childhood home in Texas, a prior home in which we lived, or a B&B or hotel. Quite a few times she has also believed that we were going to have house guests when we weren’t.

Around midnight yesterday, she had another delusion that is much less common. In fact, I think this may have been the first or second time she has had such an experience. She said something that woke me up. I asked if she was all right. She said, “What do I need to do?” I didn’t understand and said, “Right now you don’t need to do anything. You can relax and go back to sleep.” That didn’t satisfy her. She said, “What are we going to do about him?” I told her I didn’t know who she was talking about. She couldn’t remember “his” name, but said he was someone I used to work with. I started naming people I thought were most likely. I couldn’t get the right person.

We finally gave up that line of questioning and focused on what she seemed to be concerned about. It took a lot of probing, but I learned that she thought someone who had worked with me was trying to get back at me by threatening to harm her. I suggested that it sounded like she may have had a dream. She insisted it was not a dream but acknowledged that it sounded like it could have been.

I didn’t try to tell her otherwise. I shifted gears to comfort her without dealing with who the person was and what he was trying to do or whether it was a dream or a reality. I told her I would be with her and would protect her from any harm. I used that assurance to divert her attention by talking about us and our relationship. That offered us more to talk about than if I had focused solely on telling I would protect her. This didn’t have an immediate effect. She kept bringing up the man who was trying to get at me through her. I persisted, and gradually, over what seemed like an hour but was probably 30-40 minutes, she relaxed and went to sleep. By that time, she may have forgotten about “the man” altogether.

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Kate’s Intuitive Abilities Make for Special Moments

Kate enjoys life. Hardly a day goes by when I am not touched by things that she says or does. They let me know that even without a memory, she is still in touch with life through her intuitive abilities. For example, Sunday morning as we were about to leave for lunch, she saw a coaster on her bedside table. It has a picture of orange flowers on it. We have had this set of coasters for many years. She had put it on her bedside table sometime in the past few days. She had no memory of ever having seen it. She said, “Can I take this with us?” I told her it was hers, and she could take it. She took it with her as we walked through the family room to the kitchen. She stopped to look at it more closely in the light of the family room.

Walking to the car, she held the coaster close to her and said, “I don’t want to lose this.” She continued to admire it on the way to the restaurant. She said, “You’ll have to keep me from losing this.” As we pulled into a parking space, she said she didn’t know where to put it. “If we leave it in the car, you’ll have to help me find a place that nobody will see it.” She didn’t want anyone to take it. Then she decided to take it into the restaurant with her and asked if that would be all right with me. I told her it would, and she walked in with the coaster in her hand.

After we were seated and the server came to our table, Kate showed her the coaster right away. Then she placed it on the table to the left of her plate. When we were ready to leave, she noticed the coaster. She asked me if it was ours or “theirs.” I told her it was hers and that she had brought it from home. She was pleased and enjoyed looking at it all the way home. She even remembered to bring it inside, and we placed it exactly where she found it to start with. By then, she couldn’t remember that, but she was happy.

We have a lot of musical experiences that I find touching as well. Returning from lunch the other day, I turned on an album of songs from a variety of musicals. She likes all of them and started singing along with “Some Enchanted Evening.” I joined in with her. She looked at me and said, “Hey, you can really sing.” (At this point, I need to say that I am not a singer at all. I sang in several choral groups in college, but I don’t have a natural gift for singing and have never had any vocal training at all.) To me this illustrates another of her qualities that I find endearing. She is not a critic. She is impressed with just about everything that other people are able to do. There is a sad side, however. This must arise from her inability to do so many things, but I am touched by her ability to enjoy and respect whatever talent she observes in others. She really enjoyed hearing me sing. (Note: That hasn’t changed her opinion that I am not handsome and have a big nose, but she still thinks I’m a “nice guy.”)

When we got home, “True Love” by Cole Porter in the 50s was playing in the car. I started to turn off the engine when she stopped me. She wanted to hear the rest of he song. We sat there together her hand in mine until the last note when we went inside.

Yesterday she used a cup she has had about a year but never commented on until then. She was delighted by the colors on it.

These are all little things, but it makes me happy to see her enjoying herself. I am hopeful these intuitive abilities will remain with her for some time to come.

Three Hours Later

I was about to finish this post this morning when I received a phone call from my brother. When our conversation ended, it was time for lunch. Kate and I returned home about forty-five minutes ago. That’s when we experienced another special moment. It reminded me of a similar experience this past fall. The difference was that last fall she didn’t recognize our house as our current home. I was never sure, but it appeared that she either thought it was the house in which she had grown up or a previous house in which we had lived. Today she clearly knew it was ours.

It began as we entered the driveway. She commented on the house and said how much she liked it. The spring flowers on trees and shrubs are coming out, and I suggested we take a look at the back yard. We walked around the yard. She was taken with the azaleas and dogwoods.

We came back through the garage where she stopped to look at her collection of Dr. Pepper memorabilia. Once inside she loved looking from our family room through the glass doors to the back hard. As she often does, she commented on what a nice room it is. Then instead of going to the back to brush her teeth, she wanted to go to the living room. That’s when I became something of a tour guide telling her about the various pictures, knick knacks, and furnishings I thought might be of interest to her. I was right. It was really an emotional experience for her. She didn’t recognize her own or our daughter’s wedding portraits or portraits of her mother or grandfather, but she loved hearing about them. She took great pleasure in seeing her mother’s silver service and her grandmother’s china. Of course, there were also things like the fresco over the mantel and our dining room furniture that we had purchased ourselves. She hadn’t remembered any of the things she saw. Seeing things and hearing me tell her the connections to our lives was a special joy for her.

From there we went through the kitchen and back to the family room taking in other things that meant something to her. Then she wanted to lie down on the sofa in the family room while I went to brush my teeth. When I came back, she was getting up and going to the living room again. She wanted to rest on the sofa among the things she had seen earlier in our walk through. Yes, her intuitive abilities are alive and well and providing her much pleasure even though I am sure she doesn’t remember any of the specific connections to our lives I had told her only ten minutes before. That would require her rational abilities, and they are almost gone. I think we could all take a lesson from Kate.  She takes such pleasure in things that we take for granted. It’s a wonderful world.

P.S.

Just as I was about to post this entry, Kate walked in the room and saw the picture of her and her brother Ken on the cover of the “Big Sister” album he made for her. She smiled and said, “I just love this picture.” She is now resting peacefully on the sofa across from me. She’s happy, and I’m happy.

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Thoughts on Living Normally

A couple of days ago, I read a Facebook post by a friend whose 8-year-old-daughter has Down syndrome. She and her daughter were in Nashville to make a pitch to the legislature not to overlook children with special needs when it comes to the education budget. She talked about the importance of providing special needs children with as many “normal” educational experiences as possible. I am not an expert with respect to those with special needs, but what she suggests makes sense to me. That has been my approach to care for Kate.

Right after her diagnosis, we talked about how we wanted to spend our time. We agreed that we wanted to focus on the kind of things that were important to us before Alzheimer’s. We didn’t think of it this way, but what we wanted was to lead normal lives. We wanted to remain active for as long as we could. That involved travel, attending live performances, dining out, and maintaining contact with friends.

It has been eight years since Kate’s diagnosis, but we continue to be as active as possible. I suspect we spend less time at home than many people our age. We are reasonably active in getting together with other people for meals and outings like our trip to Flatrock Friday night. Just the social engagement we have with our servers at the restaurants we frequent provides a source of social contact and support. I am sure they would never imagine the contribution they make to our lives.

I wish I knew a way to assess the impact our social engagement has had on us. I am sure it has enhanced the quality of our lives and probably helped us maintain a positive outlook on life even at the present stage of her Alzheimer’s. My best guess is that Kate is just past the mid-point of Stage 6 of the seven-stage model. Life is changing, but we are still active and happy.

Over time, we have had to modify our activity. Our last international trip was four years ago in May. We love Chautauqua, NY, in the summer. We’ve spent at least a week there in each of thirteen summers, ten consecutive years until our last one in 2017. The past two years we have rarely gone to any evening events that start later than 6:00. Thus, we no longer attend the Knoxville Symphony. We have been able to continue going to live theater performances because they all have Sunday afternoon matinees. We rarely attend church on Sunday because it is difficult to get Kate ready in time. As I have frequently reported, we no longer make our daily trip to Panera for Kate’s muffin in the morning. We usually go straight to lunch. That has cut down on our social contact. Until ten-to-twelve months ago, we often spent more than six or seven hours a day away from home. That is now four to six at the most.

My background in sociology has made me sensitive to the variety of environmental factors that can affect us. That leads me to believe that my friend whose daughter has Down syndrome is making a good point that the value of living a normal life is good for her daughter and other people with special needs. To the extent possible, Kate and I have tried to live as we did before Alzheimer’s. I believe it has worked.

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A Nice End to a Good Week

It’s Sunday morning. Kate is still sleeping. I’m thinking about the good times we’ have had this week. Kate has experienced her normal confusion, but we have been active. Both of us have enjoyed ourselves. After our trip to Flatrock to see Jeanne Robertson, we arrived in Knoxville in time for our regular lunch at Bluefish. As the server walked away with our check, she stopped at the booth behind us and asked if they wanted dessert. Kate thought she was speaking to us and said, “What do you have?” Rather than call the server back, I told Kate that I would take her to Marble Slab on the way home. She thought that was a great idea. After eating our favorite ice cream concoctions, we went to the house. Kate was ready to rest. That was followed by working puzzles before going to dinner. Once home, we had a quiet evening watching YouTube video segments of Andre Rieu concerts. When we got into bed, we talked about what a good day it had been and how many good days we’ve had during our marriage. We finished the day like any other married couple would do. I said, “I love you.” She said, “I love you too.”

I treasure days like this.