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Traveling to Memphis

Yesterday we left for what I expect to be our last Christmas visit to our daughter Jesse’s house in Memphis. As with our trip to Texas in November, I wasn’t sure that we would be able to make it. About two weeks ago, I felt sure enough to make our lodging  reservations. This will be only the second time we have not stayed with her and her family. At this stage of Kate’s illness, I felt it would be better to have the privacy afforded by staying in a hotel. She can sleep as late as she wants, and we won’t have to worry about any of the mess she makes in the bathroom.

Given how late she has been sleeping, I thought I would let her sleep until 11:30, grab a quick bite to eat, and hit the road between 1:00 and 1:30. As it turned out, she woke up about 10:30. That gave us time to have lunch at the Bluefish Grill, our regular Saturday lunch place.

On several occasions, we have stopped in Nashville to have lunch with friends or visit with our friend Ellen Seacrest. She’s our friend who had a stroke while visiting her daughter in Nashville three years ago this past August. We stopped for a nice visit with her. Earlier in the week, we had seen Louise, the woman who replaced her as choir director at her church in Knoxville. When I mentioned that we were going to see her, she asked if we could take something with us. Yesterday morning she brought a gift bag with a Christmas CD, an assortment of homemade cookies, and a card with greetings and signatures of Ellen’s choir members. That made this visit very special.

Ellen had directed the choir almost forty years and contributed in many other ways to the church. She was well-known and loved. The distance has kept all of her Knoxville friends from visiting her. To the best of my knowledge, we are the only ones who have visited her more than once. Thus, Ellen was quite moved to be remembered in this way. I asked Ellen if she would like to talk with Louise. She was excited when I mentioned it. I called, and Louise answered on the first ring. That began a 10-minute phone call that was certainly the highlight of Ellen’s day. I am so glad I told Louise we were making this visit. After Christmas, I think I will talk with Ellen’s daughter and see how she would feel if we brought one or two of her closest church friends with us on a future visit. That would be quite a thrill for Ellen.

I thought it would make the trip easier if we stayed overnight in Nashville and complete the trip to Memphis today. It would also enable Kate to sleep as late as she would like without getting us to Jesse’s too late in the day. That has worked out quite well though it is increasingly difficult to travel with Kate. There is so much for me to think about and manage. Lots of things come up that would be more easily taken care of at home. I don’t intend to stop all overnight travel. I could easily see staying overnight in Nashville on other trips to see Ellen, but I don’t think we will stay away from home longer than one night in the future. I am also uncertain about how long we might do that.

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Less Confusion Yesterday

I’ve been encouraged by the success we’ve had with the Monday sitter’s getting Kate up and dressed. I was prepared to try the same thing with our Wednesday and Friday sitter. That didn’t work on Wednesday because Kate was up so early. I thought yesterday might be the opportunity I was looking for, but I changed my mind (a couple of times).

I really like to have lunch with Kate before leaving, so I decided to play some soft music about 10:15. I thought that would help her wake up gently, and we could eat together before Mary arrived. At 11:15, she was still sleeping soundly. I changed my mind again. I decided it was better to let her sleep and have Mary take care of getting her up and to lunch. I walked back to the bedroom a few minutes before noon and discovered she was sitting up on the side of the bed. She wanted to shower. She was much more alert than the previous day and needed less help getting her shower though she welcomed help dressing. By the time she was ready to go it was almost 1:00. That’s the time Mary was to arrive.  I called her at 12:30 and asked that she meet us at the restaurant. That worked out well, but having the sitter with us for an hour meant I had only three hours on my own. I skipped the Y and spent about 45 minutes at Starbucks working on a book of my dad’s emails and autobiographical notes. Then I had coffee with Mark Harrington for another hour before going back home.

The good news was that meeting the sitter at the restaurant provided a smooth transition for me to let Mary take Kate back home. Kate was very receptive to that. I had set the TV for them to watch YouTube Christmas specials. They did that the whole time I was gone.

After dinner, I watched the evening news. Then I turned on a video of an old (1995) Julie Andrews concert. Kate enjoyed watching but could never remember who the singer was. I kept telling her, but she couldn’t remember, nor did she remember having seen her in person two other times. One of those times was in the summer of 2016. Last night she had no recollection at all of who Julie Andrews is.

She got up later to look for her night clothes but didn’t know where to go. I took her to the room where she keeps her clothes and got her a night gown. She wanted to use the bathroom while I returned to our bedroom. In a few minutes I heard her call, “Hey.” When I got to her, she was standing in the hallway and said, “I didn’t know where to go.” I walked ahead of her as she followed me to our bedroom. On the way, she said, “This is a nice place.” I said, “So you like it?” She said, “Yes, don’t you?” I said, “Yes, I do.”

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More Signs of Memory Loss and Confusion

For quite some time I have been reporting Kate’s difficulty remembering names and places as well as her confusion. That makes it a challenge for me to convey how she is different now than in the past. Perhaps the best way is for me to say that I don’t think she is on a plateau but gradually declining with respect to both her memory and confusion. There have been two occasions in the past few days that particularly struck me. One of those occurred yesterday morning.

Although it was not a day for the sitter, I wanted her to get up before noon so that she could get ready without my rushing her. I also wanted us to have a relaxed lunch before her 2:00 appointment for a massage. About 10:00, I put on some music to help wake her. It was 10:45 before I tried to get her up. She opened her eyes when I sat down on the bed. She smiled and waved to me with her hand. I asked about her getting up for lunch. She said she didn’t want to get out of bed that she was too comfortable and relaxed. I didn’t leave her bedside. We began a conversation that was one of those I take as a sign of a new stage of her decline. Let me try to capture some of flavor of our conversation.

KATE:            What’s your name?

RICHARD:    Richard.

KATE:             No, your full name.

RICHARD:    Richard Lee Creighton.

KATE:             Say it again.

RICHARD:    Richard Lee Creighton

KATE:             Let me say it. Richard. (unable to remember the rest) What’s your name again?

RICHARD:    Richard Lee Creighton.

KATE:            What’s my name?

RICHARD:    Kate Franklin Creighton

KATE:            That sounds right. What’s your name?

RICHARD:    Richard Lee Creighton.

KATE:            Say it again slowly.

RICHARD:   Richard Lee Creighton.

KATE:            What’s my mother’s name?

RICHARD:   Elizabeth Franklin. Does that sound familiar?

KATE:            No. Did you know her?

RICHARD:    Yes, and she was a very special lady.

KATE:            (Looking surprised) Is she gone?

RICHARD:   Yes, she died 13 years ago, but she lived a long life. She was 90 when she died.

KATE:            What’s your name?

RICHARD:   Richard Lee Creighton.

KATE:            What are you to me?

RICHARD:    I am your husband.

KATE:            (Surprised) You are? What was I thinking? (joking)

RICHARD:    Yes, and we have two children. Our daughter is 50.

KATE:            How old am I?

RICHARD:    You’re 77, but you will be 78 in less than a month.

We talked like this for 15-20 minutes before I said I would be glad to help her out of bed. She didn’t want to, but she let me get her up and take her to the bathroom. While she was showering, she asked my name, her name, and the nature of our relationship. As I noted before, she asked these things without any sign that she was disturbed. She just couldn’t remember them and wanted me to tell her.

We went to lunch at Panera. While we were there she asked some of these questions again as well as “Where are we?” By the time we finished eating, she quit asking all of the questions. I don’t know that is because she remembered or she was wrapped up in her puzzles. On the way home from her massage, she called me by name.

As in one other experience like this she tended to accept that I was her husband but my telling her did not bring back any memory of that. Neither did my name. Not only that but the duration of her confusion lasted longer than usual. More subjectively, it also seems that the way she looked and expressed herself seemed like it was much harder for her to make sense of everything.

We spent two hours at home before going to jazz night at Casa Bella. During that time she seemed quite normal. She didn’t ask any names. She did ask for help with her puzzles several times.

As always, she enjoyed the evening at Casa Bella. She was somewhat more talkative and confident. When we got there, we saw the couple that we went to Flat Rock with last week. We quickly got into two separate conversations. The husband and I talked while Kate talked with his wife. I wish I could have participated in both conversations because Kate was very animated and engaged. She continued to be talkative after we got to our regular table. It was a little noisier last night, and it was harder for her to understand what people were saying. As she has done in recent situations like this, she kept asking us to repeat what we were saying. I really feel for her at times like this. She was ready to participate, but she couldn’t follow what we were talking about.

On the way home, she asked where we were going. I told her we were going to our house. She was surprised and said, “How can we do that?” I told her we were already in Knoxville. That was another surprise for her. When I asked where she thought we were, she said she didn’t have any place in mind. She was pleased to be going home. In a few minutes, she asked where we were going to stay. Again, I told her we would stay in our own home.

When we drove down our driveway, she was puzzled. Then the garage door opened, she said, “Oh, I recognize this.” Once inside she followed me back to the bedroom. She started to close the door to the family room. I told her she could leave it open, that we were the only ones here. She said, “That’s a shame.” She was looking at our house as a hotel or some other form of lodging and not our home. She wished other people could be here to enjoy it. Apart from that confusion, she seemed very normal and showed no sign that she didn’t know me.

At 6:00 this morning she got up to go to the bathroom. I went around to her side of the bed to help her as I have been doing recently. I was surprised that she didn’t sound either groggy or confused. She didn’t want my help getting out of bed or walking her to the bathroom though I did walk with her. She said, “I really didn’t need you but thank you.”

After walking back to her side of the bed, she said, “I just want to look out here a minute.” She was looking at our back yard. She said, “It’s beautiful. They’ve thought about everything.” She still thought she was staying some other place than our home. Then she got in bed. The timing of her trip to the bathroom was just right this morning. It was about two hours later than yesterday. That suits me better. I had had a good night’s sleep.

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An Interesting Day

Yesterday was a good, but not typical day. Kate was up quite early. I saw a light on in the hallway outside our bedroom about 7:35. She had been to the bathroom and was looking for her clothes. This early start enabled us to get to Panera before 9:00. This was the first time we had been there in the morning in almost two weeks.

It was also a day when she drifted back and forth between knowing me as her husband and not. Soon after I saw that she was up, I said, “Happy Anniversary.” She laughed, and I reminded her it was 57 years ago that we went on our first date. She said, “Only you would remember that.” She asked my name and hers two or three times while we were at Panera. She asked rather casually without any sign that she was working to remember. She just wanted to know.

The fact she was up so early meant there was no need to let Mary get her up and dressed when she came at 1:00. We’ll wait until another time for that. Kate greeted Mary very naturally and warmly when she arrived. The only indication of concern she expressed was when I said I was going to the Y. She said, “What am I going to do?” I told her that she and Mary could watch a DVD or go to Panera. She expressed interest in a DVD. I put on Les Miserables. They were watching as I left.

When I got home, they were still watching. Kate was relieved to see me and indicated she was ready to get out of the house. After Mary left, I asked Kate if she missed me. She said yes and got tears in her eyes. We got ready to leave for dinner.

On the way to dinner and several times while at the restaurant, Kate said she was very tired and wouldn’t last long after getting home. She frequently says that and then gets her second wind after dinner. That’s what happened last night.

When we returned home, she got out of the car and asked, “Where are we going now?” I told her we were going into our house. She liked that. Once inside, she commented on how much she liked the place. After taking her seat in our bedroom, she said, “We’ve been here before, haven’t we?” I told her we had. A few minutes later she said, “What is this place?” I told her it was our house.  She said something about its being “conveniently located.” After another minute or two she said, “You’re a good traveler.” I asked what made her say that. She said, “You know how to get here.”

She was having trouble working her puzzles about 9:00. I suggested she get ready for bed. She wanted to know what she should do. I brought her night clothes to her and got her to the bathroom before she went to bed. She was a bit confused and needed my help all the way.

Just after 4:00 this morning, she wanted to go to the bathroom and asked me where it is. I got up and walked her there. She also wanted to brush her teeth and was back in bed in a few minutes. When we got back in bed, she said, “Who are you? My husband?” I said, “Yes.” She didn’t say anything more and didn’t go to sleep right away. She started running her fingers through her hair. She approaches this as though it is a chore. She evens says, “I’m working on my hair.” In a few minutes I said, “Don’t you want to go back to sleep?” She asked if I wanted her to stop. I told her she could stop if she wanted to. She said, “Oh, thank you.” with a sound of great relief. It wasn’t long, however, before she started again. She stopped a few minutes later. She was asleep when I got up at 4:50.

This is one of several times recently when she has gotten up between 4:00 and 5:00. I’m beginning to wonder if this is going to be a pattern. If so, I may need to get to bed a little earlier since it is hard for me to go back to sleep. For many years I have gotten up around 5:00, so it doesn’t bother me to get up about that time; however, I started getting up around 6:00 I when I stopped walking in the morning. To make that work I have been getting to bed later than I used to. I might need to make another adjustment.

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More Success with the Sitter

About three weeks ago, we got a new sitter on Mondays. She replaced the previous one who was experiencing her own health issues. I asked the agency to send the new sitter an hour earlier on her first day so that I could get acquainted with her and give her instructions about Kate and her care. I liked her immediately. When Kate met her, she felt the same way.

I felt so comfortable with her that the following week I left before getting Kate up. That left Valorie to get her up and help her with her shower, dressing, and taking her to lunch. That has taken a big psychological load off of me. Prior to that I sometimes had to rush Kate to get up and ready for me to take her to lunch before the sitter arrived. Now I don’t have to get her up at all.

I have been surprised and pleased by the way Kate has handled this change. In fact, I don’t think she has been aware of it. That’s the sad part. On the other hand, she likes Valorie. When I told her this past Monday that I was leaving and that Valorie would help her with her shower and getting dressed, she was perfectly at ease. That makes me feel comfortable about leaving.

Now I am beginning to wonder how Kate would respond to Mary who comes on Wednesday and Friday. Would she feel as comfortable accepting her help with those same things? I think so and am willing to try it. The difference is that Mary arrives at 1:00 instead of 12:00. That means Kate is more likely to be up and showered by the time Mary arrives. Whatever the future holds, I feel good about both of our sitters.

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A Day of Happy Moments

Yesterday I wrote about our finding joy while living with Alzheimer’s. I’m glad to report that we had another good day. They aren’t all that way, but the vast majority are. From the time she woke up until she went to bed, Kate was happy. She opened her eyes when I sat down on the bed beside her. She gave me a warm smile. She didn’t look at all groggy and didn’t seem at all bothered by my trying to get her up. I said, “I love you.” She touched her lips with her finger and pointed it at me to say, “I love you to.” I’m not sure if she remembered my name, but it seemed like she knew my name the entire day. She didn’t ask me one time.

We had a seniors’ Christmas lunch at our church at noon. As usual, I was concerned about having to get her up and ready so that we could be there on time. She wanted to sleep, but I told her we were going to a church luncheon. I asked if I could help her get up. She said I could and extended both her hands for me to pull her up from a lying position to sitting up on the side of the bed. It has also become common for her to ask, “What do I do now?” upon waking. I told her she could start with a shower. She held my hand while I walked her to the bathroom. She seemed especially needy and dependent all day. She asked me what to do for every step in the process of getting ready. I am amazed at how quickly she has fallen into accepting my help and that of her sitter.

I did have a surprise after she finished her shower. She was very sad. She told me that family was very important and that everyone would be there if they could. She never explained but from what she said, she thought someone had had an accident and died. In a few minutes, she had forgotten all about it.

As I helped her dress, she repeatedly thanked me for helping her. She and I both want her to do as much as she is able to do herself, but we are gradually drifting toward my doing more. For example, this morning I put her socks on her. It is really easier for me to do it than for her, and it certainly saves time when time is important.

Our lunch was served buffet style. That is a bit of a challenge for Kate. I was surprised that she served herself some salad. She hasn’t eaten a salad in a long time. I served her a piece of chicken and a slice of pizza as well as getting drinks for both of us. I cut her chicken for her after we were seated. After the meal and I had taken our plates to the trash, she pointed to the place where her plate had been and then pointed to the places of the others at the table. Each of the others was perfectly clean. Hers was covered in Oreo cookie crumbs from the crust of the piece of pie she had eaten. She smiled and then frowned. I was struck by the fact that she noticed. Because she often leaves a little mess around her plate, I had assumed that she didn’t notice. Now I know she does, at least when we are sharing a table with people we know.

I was touched by a couple of things that happened at the end of the meal. When we arrived, I had forgotten that we were meeting in a different location than usual. That meant we had to walk through the church and go down two different stairways. That required a good bit of effort for Kate. At the end of our meal, I decided I would bring the car around for her. I asked the people sitting next to me if they were going to be there for a few minutes and explained that I wanted to get the car and leave Kate at the table. They were happy to stay with her. When I started to get up, Kate wanted to go with me. They invited her to take my seat beside them and let me get the car. She consented. I am sure she got along just fine while I was gone, but when she saw me coming back to the table she beamed like a daughter seeing her mother or father after a short absence. Then the group sang a few Christmas carols. Shortly, Kate reached over and held my hand. She was definitely glad I was back.

We came back home for about an hour before going to Barnes & Noble for a full two hours. From there we went to dinner at Bonefish Grill. She never asked for my name or seemed especially confused. The exception would be when she went to the rest room. I had selected a seat so that I would be able to look straight at the place she would exit. When she came out, I started toward her. She was looking for me in several directions. When she finally saw me, she was greatly relieved. That is different from the past. On similar occasions when she hasn’t been able to find me she has been quite calm. I sense that she is becoming less secure as she becomes more dependent on me.

Once we were home, she picked up her iPad while I watched the evening news. When the news was over I turned on the latest Tabernacle Choir Christmas concert. I took my shower. When I got out, she had gone to bed. It’s too early to tell, but she may be needing more sleep now. Even though she is getting up later now, she is still getting up earlier than she wants to. Before she went to sleep, she thanked me. I told her I loved her, and she had tears in her eyes. I don’t know what brought them on. I wonder if she senses the change she is experiencing. Despite those changes, we had happy moments and enjoyed the day.

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The Joy of Living with Alzheimer’s

Whenever I tell people that Kate has Alzheimer’s, I see a shocked look on their faces. Their words match their faces. All one can think about is the horror of the disease. I understand. I was in their shoes when Kate’s doctor gave us the diagnosis. That was almost eight years ago. I’ve learned a lot more about the disease during that time. I still recognize the sad aspects and never intend to deny them in my posts. They are real, and I am about to experience more of them as Kate approaches the late stages of the disease.

When I began my journal, my intent was to document our journey. I didn’t know what it would be like, but I thought there might be other people in our shoes who could benefit from our story. For me, the most important thing I have learned is that the enjoyment of life does not end with the diagnosis. Life has changed, but Kate and I continue to be active. Even now as her memory fades and confusion is common, we have many good moments.

One of the other important things I have learned is something that helps to explain why we have gotten along so well. I credit Judy Cornish and her book, The Dementia Handbook. Let me briefly summarize the point she makes for those who are not familiar with her book or my posts about it.

Cornish talks about two general categories of abilities that everyone possesses, those that are “rational” and those that are “intuitive.” Rational abilities include the kinds of things we learn in school like the names for people, places, historical events, and procedures for accomplishing specific tasks. Rational thought or abilities are very important, but not everything.

Cornish gives special attention to our intuitive abilities. These involve our ability to directly experience the world around us via our senses. Her point is that dementia has its greatest impact on our rational abilities. When people with dementia lose their memory, they lose the facts, figures, names, and procedures that they have accumulated over the years. Much of our everyday life depends on this kind of knowledge. That’s the bad news.

The good news is that much of the pleasure we enjoy in life derives from our intuitive abilities, and people with dementia retain those for a very long time, often near the end of life. This has been of critical importance to Kate and me. It has given us many happy moments.

I wish I could say that I had this knowledge or insight when we first received Kate’s diagnosis. I didn’t. I had no idea of the role her intuitive abilities would play in our lives. All I knew was that we wanted to make the best of the time we had together. We chose to do more of the things we always enjoyed. That included travel, musical and theatrical events, and being with friends. As her caregiver, I took the responsibility of organizing our lives around these things, and we have both been happy.

Over the years I have experienced a change in what gives me pleasure. It is not that I experience any less pleasure from all the other things we have done. It is that I now derive just as much pleasure from seeing Kate enjoy life. There are lots of these things that bring me pleasure. Most of them are little things that mean a lot.

One of those is her sense of beauty. She often comments about the beauty of the trees and shrubbery we see everywhere. That frequently involves the dense growth of trees and brush on our neighbor’s property behind our house. Sometimes it is driving along a highway or the streets here in Knoxville. It also includes the jigsaw puzzles she works on her iPad. She often asks me to look at puzzles she thinks are particularly beautiful or cute. The latter usually involves cats or kittens.

Kate also enjoys her family photo albums. I enjoy watching her leaf through the pages and hearing her comments as she goes through them. That is especially true of the “Big Sister” album her brother Ken made for her. She loves the cover photo of the two of them when they were about four and two. I also enjoy sitting down beside her and going through the album with her.

Recently, she has talked about the beautiful lights she sees at night. Many of these are Christmas lights, but just as often they are the headlights and taillights of the traffic we pass. Often lights obscure what would otherwise be rather mundane retail stores. The other night we walked by a wig shop that is next door to the place we get pizza. She commented on how beautiful it was. I would say it’s a pretty tacky shop in a strip center that is also tacky. It’s hard for me to see the beauty, but I enjoy seeing her enjoy simple things like this. She also takes more pleasure in sunsets than she used to.

She has always taken an interest in small children and babies. That has increased since her diagnosis. She almost always comments on the children she sees when we are out. When we are entering or leaving a restaurant as she did this past Sunday, she frequently stops to speak to a child and the child’s family. She always tells the family that they have an adorable child.

I find that she is less critical in her evaluation of musical and theatrical performances. That’s a good thing in that it enables her to enjoy performances that she might not have enjoyed as much in the past.

Last night I pulled up a series of YouTube videos of Christmas music by the Tabernacle Choir. This was one of those time she was so drawn in by the music that she put down her iPad. That doesn’t happen often. She was happy. I, too, was happy, not just because of the music, but I like to see her happy.

I am also touched when she seems to recognize me and express her appreciation. Yesterday morning she got up early to go to the bathroom. I took her and brought her back. As I pulled the covers over her, she said, “Thank you. You always know what to do.” I said, “I love you.” She said, “I love you too.” She paused and said, “What’s your name?” I found it touching that even though she couldn’t remember my name that she was still able to retain her feeling for me.

During the evening and when we went to bed, she seemed to recognize me as her husband. She didn’t ask my name except once at dinner. When we went to bed, I told her I love her. She said the same to me.

I consider all of the experiences above as good ones. They are the kind of things that make me say we have been able to live well as we live with Alzheimer’s. And all of them can be enjoyed at a time in our journey when Kate’s rational abilities are almost gone. I’m looking forward to more good times.

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Sleep, Memory Issues, and Confusion

We had no special obligations yesterday, so I let Kate sleep a little later. When I checked on her about 10:30, she opened her eyes. I asked if she were ready to get up. She wasn’t. I got her up shortly after noon. She wanted to sleep longer but got up anyway without making a fuss. As she has done on a couple of other occasions recently, she got up, showered, and dressed reasonably quickly. It was still almost 2:00 when we left for lunch.

When she got up, she looked at me and asked, “Are you my daddy?” I told I was her husband. She was surprised. Then she asked my name. When I told her, she asked if I were her daddy again. This was like another occasion in the past few days. It wasn’t just that she couldn’t remember my name or that I am her husband. It was the fact that she asked so many times in succession. In addition, nothing seemed to jog her memory until we were well into our lunch.

She never seemed frustrated or disturbed, only puzzled that she and I were married. As we pulled out of the garage on the way to lunch, she asked again if I were her daddy. Again she was surprised when I said I was her husband. I commented on the fact that she seemed to be comfortable with me the way she would if she knew me. She acknowledged that she wasn’t afraid of me or bothered by me. She just didn’t know who I was.

When we arrived at the restaurant, I went around to her door and opened it. She said, “Richard” and pointed to her cup in the cup holder. She was asking if she should take it in. I told her to leave it in the car and then said, “You said my name.” She said, “What is it?”

It was no surprise that she pointed to the enlarged photo of Frank Sinatra on the wall of the restaurant and asked me who he is. She must have asked between five and ten times while we were there; however, she did remember that she has bad feelings about him. Before lunch was over she stopped asking my name, her name, and the names of our children. Part of the reason was that I felt as though I were pummeling her with information, and she needed a break. I think it was also a result of her having a longer experience in a restaurant that we frequent every Sunday. We talked with the hostess, our server, and another server we know. I think all of these things helped to bring back bits of her memory. A few minutes before we left the restaurant, she said, “You’re a good husband.” I said, “What makes you say that?” She said, “Somebody told me.”

We left the restaurant shortly after 3:30. In the car Kate asked if she could take a nap when we got home. I told her that would be fine but that I was surprised she was still sleepy since she had only been up less than four hours. When we walked in the house, she asked what she should do. I told her I thought she might like to brush her teeth and spend some time together in the family room. She went directly to a chair in the family room where I handed her the iPad. I went to brush my teeth. Before I finished brushing, she got into our bed for a nap. She was there until 5:30 when she told me she was hungry.

It’s not just names she is forgetting. I notice a number of other little things. For example, she asked me to tell her how to flush the toilet last night. For some time she hasn’t been flushing. I never thought about the fact that she might have forgotten how. Sometimes she doesn’t know where to put her cup when she gets in the car. She occasionally forgets where the seat belt is located though she remembers to put it on. A couple of nights ago after returning home from dinner, she walked out the back of the garage instead of coming into the house. When I explained that we were going in the house, she said, “How was I to know?”

As we returned home after dinner, Kate said, “It looks so different after dark. I’m glad I have a ‘witchie’ to drive me.” This is another instance of her getting mixed up with words. The words are sometimes unintelligible or unrecognizable. In this case she was trying to say “someone to drive me.” I said, “You wouldn’t know how to get home?” She answered, “I could get there. It was just take me a while.” This is one of those little signs of her retaining a sense of independence. It happens most frequently when she asks for my hand going up and down curbs or stairs. She frequently says, “I could do it myself. I just feel better holding your hand.”

These changes are coming about gradually but are frequent. Life is very different now than it was in the early years after her diagnosis.

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Some things work out without much effort on my part.

Although I try to avoid or minimize making any morning obligations, I have not eliminated them entirely. One of those occurred last week when I had to go for my labs at the doctor’s office. Another occurred yesterday. I had made plans to take Betty Shiffron, a church friend, to see La Traviata at one of the Live in HD at the Met performances. Kate and I usually eat at the Bluefish Grill on Saturday, and it is short walk to the theater. The last time we did this was in the spring just before Kate began sleeping so late in the morning. I told Betty we would pick her up shortly after 11:00 unless Kate were having any trouble getting up. I was concerned that I might have a problem, so I decided to start early. When I went to the bedroom around 9:00, I found that Kate had already gotten up. From there it was smooth sailing. We even had enough time to get her a muffin at Panera before leaving for Betty’s house.

We had a very pleasant lunch although it seemed to be a more challenging experience for Kate than I expected. She wanted to be engaged in the conversation but had trouble understanding what we were talking about and remembering things we had already said. Quite a few times, she said things like, “Who are you talking about?” or “What are you talking about?” It didn’t present a problem for Betty and me, but I felt sorry for Kate. Betty is not as accustomed to being with Kate and is not as sensitive about her difficulty following conversations. It was a “sink-or-swim” experience for Kate.

The Live in HD at The Met performances significantly increased Kate’s enjoyment of opera. Although we had attended operas before then, I think she went more for my benefit than hers. Seeing opera on the big screen with the camera work that brings the viewer up close has made her enthusiastic. She has changed a lot since the spring, and I wondered how she would respond. Several years ago I had a “walk-on” role in La Traviata when a European opera company came to Knoxville. In addition, Kate and I attended a performance of the opera in Zurich during our last international trip in 2015. I didn’t expect her to remember the opera, but I did hope that she might recognize some of the music. She did enjoy the music, but the overall experience was not what I had hoped. She was very confused about what was going on. During the first intermission, she wanted me to explain it to her. It was simply too complex for her to grasp.

This was a good illustration of the fact that the intuitive” part of her mind still values “rational” thinking. I had wanted her to focus on the music which I knew she could enjoy and not worry about the plot and precisely what was going on. This is not something that is new at all. That is what is behind her efforts to know people’s names, where she is, and what they are saying on the news. It is easier for me to let go and let her enjoy life through her intuitive abilities than it is for her. Situations like this are good reminders to me that there is an intersection of the rational and intuitive processes.

After the opera, Betty wanted to take us to get ice cream. When we entered the shop, there were only a couple of open tables. I took Kate to one and asked her to stay with the table while we ordered. While we were in line she left the table and approached us. She never went back to the table. I’m not sure whether it was a result of confusion over what I had asked or that she felt more secure being near us. I think she was confused. I do know that she frequently is confused by almost any instruction she is given.

Similarly, at dinner I asked her to take one of two tables while I went to the counter to order. She wanted to go with me. When we walked to the counter, she wanted to go to a table. This is also a common occurrence. At one moment she wants one thing. The next she wants something else.

As I mentioned in a recent post, she is beginning to have trouble with words in her speech. Last night as we left dinner, I played a CD in the car. She said, “They wear this a lot.” I said, “What?” She said, “This song. They put it on a lot.”

Despite these things, we had a very nice day. Being with Betty was also good for both of us. She is 90 and quite fit and very active. She is also a big talker and speaks quickly. She also walks quickly. It was a good finish to a week of social and musical experiences.

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A Very Good Day: Mood Trumps Memory Loss and Confusion

If Kate were unhappy, frustrated, or disturbed, I could easily have been depressed yesterday. Instead, I am adding this to our long list of good days. It began in the morning and lasted until we turned out the lights for the night. Kate was in an especially good mood. I don’t mean to suggest that her primary Alzheimer’s symptoms were any less than usual. As I mentioned in my previous post, she was especially dependent and insecure at 4:30 a.m. What was different was her mood. She was happy and contented. This was reflected in the way she responded to me and the sitter.

After getting up in the early morning hours and again around 8:30, she slept until almost 11:00. That’s when I checked on her and found that she was awake but still in bed. I sat down beside her and told her I would like to take her to lunch. She smiled and said she would like that. Some mornings she lingers a good while before getting out of bed. This time she got up rather quickly, and we left for lunch about 11:45.

On the way to lunch she asked my name several times. When we got to the restaurant, she continued to ask my name and hers. Consistent with previous occasions, she did not seem frustrated over not being able to remember the names. The style of the conversation was just like an easy one between any husband and wife or two friends. Anyone who might have watched us from a nearby table would never have imagined that she was asking my name, trying to repeat it, failing to do so, and asking again. This was another of those occasions when she wanted me to tell her about her mother. She loved hearing me tell her what her mother was like and how her mother and father met. She was also curious about our children, and I filled her in on them. In our conversations she keeps returning to her parents, her family, and our children. There is no mistaking their importance to her even if she can’t remember their names or much else about them. I love being able to tell her about them. I never tire of it even though it is something I need to repeat over and over and over. This is a sign of adapting. During the early years after her diagnosis, I could not have imagined deriving any measure of satisfaction as her memory vanishes. The people who know this disease say that caregivers need to live in the world of the ones for whom they care. Fortunately for Kate and for me, I am able to do that. It didn’t come overnight. It has been a long slow progression.

On the way home, she asked me the nature of our relationship. I told her we were married. She was surprised. She wanted to know how long we had been married and if we had children. All of these questions were asked innocently as though we had never had the previous conversation while at lunch. As much as I see this, it always takes me aback when it happens.

When we walked in the house, she asked me if she could take a nap. I told her that was fine. She brushed her teeth and then proceeded to get in bed when the sitter arrived. Mary walked over to Kate and gave her a hug. Then she said something that really surprised and pleased me. She told Mary that she was glad to see her, that she wouldn’t want to stay at home by herself. I told Mary that I was about to put in a DVD for them to watch and asked if they had any preferences. They quickly agreed on Fiddler on the Roof. I set it up for them and started to leave. Then Kate said, “She’ll take care of me. Well, we’ll take care of each other.” I left feeling good.

When I returned, they were in the family room where Kate was looking through “The Big Sister” album that her brother Ken had made for her. Mary left, and I sat down with her and went through the album for another twenty minutes. I really enjoy seeing her go through the album. She gets so much pleasure from seeing pictures of herself, Ken and her family. I know this is exactly what Ken was hoping for when he made it. This is something else that provides joy for me as well. It is a very simple pleasure but a powerful one.

It wasn’t long before Kate was ready for dinner. We left for our Friday night pizza. When we got home, we relaxed in our bedroom. Kate worked on her iPad while I watched the evening news. Then I turned on a YouTube video of Messiah.

After we got to bed, I told her I loved her. She responded the way she has on several other nights. She laughed. When she does this it is because she thinks we are in the early stages of our relationship, and it seems too early for love. I said, “You love me, don’t you?” She said, “We’ll see.” I said, “I guess we could just go on living together.” In a serious tone she said, “Don’t ever say that again. I’m surprised you would say that at all.” This situation seems so incongruous. We were lying close together, and my arm was around her. A few minutes later she asked, “Where are we?” I told her we were in our bedroom in Knoxville.