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Addendum on Sleep and Confusion

Kate still seemed tired this morning after waking her. I let her stay in bed another thirty minutes before getting her up for lunch. I am sure she would have remained in bed much longer without my encouragement to get up. She was happy to have me help her get dressed. At one point, I asked if she thought I was rushing her. She said, “No. You’re a good daddy.” As I had done earlier, I let it go without correcting her about my being her daddy. On the way to lunch, she said something else about my being her daddy. A few minutes later, she asked, “Are you my daddy?” I said, “Actually, I am your husband.” She gave me the usual surprised look and said, “And I’m your wife?” She didn’t raise any further questions. I couldn’t help wondering if she had asked the question because she herself was beginning to question whether I was her daddy. I’ll never know.

Driving to and returning from lunch, I played a CD that I bought three or four years ago in Memphis while we were visiting Jesse and her family. It is a compilation of show tunes and old standards that are quite familiar to our generation. I played this several days ago, and she had liked it. She was just as taken with it today. On the way home, she started singing with “Some Enchanted Evening.” Then she wanted me to sing with her. It is an inexpensive CD that has singers who are unidentified. During almost each song, Kate asks me who is singing. Each time I tell her I don’t know and that the company who made it kept the costs down by using unknown musicians. Of course, there is no way she can remember.

On the drive home, she mentioned that she was tired and might take a nap this afternoon. She often says that but forgets soon after we get home. That wasn’t true this time. When she walked into the family room, she headed toward the sofa and asked if she could just rest a while. I told her that would be fine. That was about an hour and fifteen minutes ago. She has been sleeping soundly, not just resting. It makes me wonder about yesterday. I didn’t watch her as closely as I have done today. She might have actually slept then as well. She just opened her eyes and said, “Hey.” Her eyes are closed again. I think I will let her sleep another hour or so if she wants to. She must need it.

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Confused This Morning

A few minutes ago, I went back to the bedroom to wake Kate. She opened her eyes and smiled as I sat down on the bed beside her. I said, “Good morning, I love you.” She said, “I love you too cause you’re my daddy.”

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Reflections on 2018

As we begin this new year, I find myself reflecting on the past and thinking about 2019. Over the past couple of years, I have not been as hopeful as I was in the early years after Kate’s diagnosis. I think that is to be expected. Now we find ourselves in the later stages of Kate’s Alzheimer’s. This means that Kate will continue to decline. As she does, our lives will change as well. The most notable changes in 2018 have involved her memory loss, more confusion, sleeping later in the morning, and her growing dependence on me. All of these have led to corresponding changes in our lives.

Of course, Kate has gradually lost her memory throughout the eight years since her diagnosis in January 2011. For the most part that didn’t seem quite as problematic as it became in 2018. Part of that is psychological. For example, this was the year that she began to forget both my name and hers. More recently, she has begun to have trouble recognizing me as her husband. These changes in memory didn’t make any difference in our being active in the community. We still eat out for lunch and dinner. We continue going to the music nights at Casa Bella as well as attending other musical events in the community and listening to music at home; however, the loss of my name and hers hurts in a way that the memory of others doesn’t. This is a signal that most of her memory is gone. It has a special impact when she can’t remember our names even moments after I tell her, often immediately.

Memory loss is accompanied by greater confusion. This was the year in which she forgot a good bit about our house and the community in which we live. If asked, she couldn’t tell you where we live or where she is at the moment. She often asks me where the bathroom is in our house. She doesn’t know where her clothes are kept. As I have reported, she often thinks we are some other place than our own home. Her normal pattern when we return home is to wait for me to lead her to the back of the house. She also calls out frequently, “Hey, where are you?” when she doesn’t know where to go after going to the bathroom.

The changes in her sleep have had a greater impact on our lives than anything else. Before she started sleeping so late, we were regulars at Panera in the morning. We had gotten to know the people who work there as well as many of the regulars who stop by, not to mention the friends we know from other places that might be there. It was a stimulating experience for both of us. That is all but gone now. Most of the time we don’t leave the house until time for lunch.

The last big change for Kate has been her growing dependence on me. This was the year that I began to play a much larger role in helping her with everything. I am glad that she retains a desire to do things on her own. Just yesterday, she resisted my help with dressing and extending my hand to help her from the car as well as going up and down curbs. I hope this continues a while longer, but she is gradually turning over more and more to me. The most recent big change was accepting help showering and dressing from both of our sitters. I fully expected some resistance.

I don’t know exactly what will happen over the course of the coming year. I do know that she has made significant changes in the past 6-8 months. She is beginning to behave as one would expect of a person with Alzheimer’s. I have to expect more of that in 2019 unless she reaches a plateau. Even if that happens, it won’t be forever. That saddens me, and yet, I continue to be grateful that she has gotten along so well since her diagnosis. I am also hopeful that we will continue to enjoy life and each other even if it is not in the same way as in the past.

Kate and I are not unique in not knowing what lies ahead. The same is true for each of you reading this post. Along with my hopefulness about our own future, I wish each of you the very best in 2019. Happy New Year.

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Confusion in the Afternoon

After lunch yesterday, Kate and I spent almost three hours relaxing in our family room. It was a cool overcast day, and I made our first fire of the year. I don’t think we had more than one or two all last winter. I put on some music and began my previous post while Kate worked on her iPad. After two hours, she rested on the sofa though she didn’t go to sleep.

When she got up, we talked about going for an early dinner and how pleasant the afternoon had been. We also talked about all the good times we have had. As so often happens, she then asked my name and our relationship. Once again, she was surprised that we were married.

We talked a little more and then started to walk toward the garage. She stopped and with a puzzled look on her face, she said, “I don’t even know who I am.” I told her I could help her and picked up her “Big Sister Album” that her brother Ken had made for her. I showed her one of her baby pictures and her name. Then I turned to a page with our wedding photos and read the accompanying information to her. She was delighted and wanted to take the album to dinner with us. I suggested we leave it at home and go through it later. When we got home after dinner, she wanted to wait until today.

On the way home, she expressed her confidence in my driving and thanked me for taking such good care of her. I told her that I do it because I love her. I should say that I not only do things to care for her, but I have paid particular attention to cultivating a relationship of trust. I tell her I love her far more than I ever did before Alzheimer’s or even the early years after her diagnosis. I put an emphasis on this about two or three years ago. Prior to that we light-heartedly joked with each other. She was never one to joke, and over time, her jokes began to sound like more serious charges about my trying to control her life. When I noticed that, I backed away from almost all joking with her and adopted the approach of a more loving partner in her journey. I think that has paid dividends as she has become more dependent on me. She still talks about my trying to control more than she would like. She did that last night, but she also is able to say that she knows I do that with good intentions. I sense that she recognizes my desire to help her no matter what happens. I believe that is reflected in her expressions of appreciation that are becoming more frequent. For quite some time, I have said that we are a team and that we face everything together. Sometimes she uses that term when we work together on something. For example, last night I gave her my hand as she got out of the car. When she got up, I said, “You did it.” She said, “We did it. We’re a team.” She occasionally says something similar when I help her get dressed.

As we walked in the house after dinner, she asked what she could do. I told her I would see if there were something on TV that he might enjoy. I also mentioned that she could work puzzles on her iPad. She liked the idea of puzzles. She worked happily until I told her it was time for us to go to bed.

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Little Things and the Importance of Intuitive Abilities

Yesterday was another relaxed day and a very nice one. Even though we had no commitments for the day, I got Kate up before she was ready. Our housekeeper was at the house, and I also didn’t want to eat too late in the day. Fortunately, Kate didn’t make a fuss at all about getting up. She responded to me as though she recognized me. She didn’t ask my name or who I am. She gladly accepted my help with dressing although she did most of it by herself.

When we were ready for lunch and about to get in the car, she called to me in a whisper and motioned me to come close to her. It was like she was trying to keep someone from overhearing her although there was no one around. I walked to her, and she whispered in my ear, “What is my name?” I told her. She asked me to repeat it and then said it herself. As I opened the car door, she said, “What’s your name?” When I told her, she said, “I knew that.”

On the way to lunch, I played a CD of familiar show tunes. She sang along with several of them. I was surprised at her memory for the lyrics. She didn’t get them perfectly, but she did a pretty good job. She also surprised me as we left the restaurant. We were about to step off a curb when she said, “Take my hand.” I immediately sang the phrase “Take my hand; I’m a stranger . . .” She finished it by singing “in paradise.” I was surprised again. That’s an old song, and one that we haven’t heard in many years.

Later after we had returned home, she picked up something that belonged to our housekeeper thinking it was ours. I told her it was the housekeeper’s. She said, “My bad.” I don’t ever recall her using that expression before, and it is obviously of a more recent vintage than the old songs she was singing earlier. Once again she had surprised me.

I continue to believe Kate derives a good bit of pleasure from the puzzle pictures themselves as well as the satisfaction of completing them. She often asks me to look at a puzzle after she has finished it and comments about the colors or how cute the animals are. She has two or three that she works over and over. Both of them are pictures of kittens. One is very colorful. Kate like that. She likes the kitten in the other one. This happened several times while we were at Barnes & Noble yesterday afternoon. Her intuitive abilities are alive and well.

After dinner last night, I turned on the last of the Clemson/Notre Dame game and planned to watch the Alabama/Oklahoma game. As so often happens, my plans changed. Normally, Kate works her puzzles until time for her to go to bed. As I have mentioned before, she is encountering a little more frustration with her puzzles now. There have been a number of occasions in the past several weeks that she has simply put down her iPad and sat without doing anything. That is what happened last night. I saw that she had stopped working her puzzles and knew that she needed a break. I suggested that I find a YouTube video with some music. She liked the idea. I found a series of Andrea Bocelli videos that she enjoyed. That was followed by an old “Christmas in Vienna” concert with The Three Tenors. She watched all of it and was thoroughly entertained. That was an hour. It led to several additional videos of Bocelli with other musicians like Lang Lang and Sarah Brightman. Kate was so engaged that she didn’t want to go bed but did so at my urging.

So what about football? The truth is that I didn’t have a stake in either game, so I didn’t consider it a great sacrifice to give them up. In addition, I also enjoyed the music as well as watching Kate being so engaged. I hope that we will be able to enjoy music together for a long time. It’s a pleasure for me to live in the moment with her. It is also another example of how important intuitive abilities are to both of us. They provide moments of joy I did not expect when Kate was diagnosed.

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Yesterday Afternoon and Evening

After Mary left yesterday, Kate and I went to Barnes & Noble. She was working puzzles on my iPad since we couldn’t find hers. I think she must have left it in Mary’s car when they went to lunch. Because she was using my iPad rather than her own, she had a different selection of puzzles. This may have confused her. She didn’t know how to start. I opened a display of several puzzles and asked her to choose one. She didn’t know how. I opened one for her. The way the puzzles work is identical to those she has worked on her own iPad, but there have also been occasions when she didn’t know how to open a new puzzle on it as well.

She was unusually talkative. As she worked her puzzles, she repeatedly talked about how nice it is “that they have these things (the iPad and my laptop) while you’re waiting.” She didn’t realize they belonged to us. She acted like she had never seen them before and wanted to know who made them. I was trying to think of a simple answer and said, “Steve Jobs and Apple.” I don’t know why, but she got the impression that I had played a role in the development of “these things.” I tried to tell her that I didn’t have a part at all. I was just explaining who did. Then she said, “But you had a role in helping me understand it.” I appreciated her acknowledging that I help her a lot, but I didn’t want her to underestimate her own talent and receptivity to technology. That led me to  remind her that as a school librarian/media specialist that she was using personal computers (the Apple II) before I did.

She gravitated from the iPad and laptop we were using to the changes in technology that had occurred during our lifetime. She didn’t mention anything specific, but I picked up on her comment and recounted some of the technology that had come on the scene since we were in college. She was quite engaged with the topic. She also kept coming back to how nice it was that “they” (Barnes & Noble) provided the iPads and laptops to people while they are waiting.

When we left Barnes & Noble, It was raining. She thanked me for driving and being so careful. She said she could have done it, but she felt better that I was driving. At dinner, she was very tired but also talkative. She was also in one of her very complimentary moods. She kept thanking me for all the things I do for her. We talked about some of the things we have done during our marriage. She got a little teary. Then she asked, “What’s your name?”

After dinner, I watched the evening news while Kate worked on the iPad. After forty-five minutes, she stopped. She found the puzzles too frustrating. I suggested that I put on a YouTube video with music. I found a Andrea Bocelli concert. She loved it. It saved the evening for her. Prior to that she was feeling low over not being able to work her puzzles and having nothing else to do. She was clearly rejuvenated by the music. She had gotten so keyed up that she no longer felt tired. We went to bed anyway, and, fortunately, she had no trouble going to sleep.

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Happy Moments: Part 2

Shortly after I had explained to Kate that Karen is our daughter and Lee is her husband, she shifted her focus to our relationship. She was happy and said, “I am beginning to feel normal again.” I asked her to explain what she meant. She stumbled on her words, but said, “I am feeling at ease, and I attribute that to you.” She also thanked me “for bringing me here. If it weren’t for you, I wouldn’t be here.” She went on to say how much she appreciated my patience with her and how that helped her to feel relaxed. Over the next twenty minutes to our hotel, she continued to express that sentiment. In some of her comments, she noted how many things I do for her that she can’t do. I don’t think she was speaking specifically about things she couldn’t do because of Alzheimer’s, but that is the way it sounded.

When we got to the hotel, she said, “You are my best friend. I feel I can tell you anything. I trust you.” This was mixed with an extension of the conversation we had had in the car. She reiterated how relaxed she is with me. Twice she said, “I feel we just connect, and we haven’t known each other that long.” I started to tell her that I was her husband and that we have been married fifty-five years but decided not to say anything. At various points I thought she knew me as her husband. At others I wasn’t sure. I do know that near the end of our conversation she said, “What’s your name?” To me this was a dramatic illustration of the power of feelings over her rational mind. It is also a reminder that it is only a matter of time before she won’t remember either my name or that I am her husband, but I will treasure moments like this one. She was happy, and although I felt a touch of sadness, I was happy for her.

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Conversations in the Night

We didn’t have uninterrupted sleep night before last in Nashville. We got to bed around 10:00. A few minutes before midnight, Kate needed to get to the bathroom. As usual, she was confused about its location. I left the light on to make it easy, but that didn’t help at all. I helped her. When we got back in bed, she was very relaxed but talkative. She wanted to know where we were. I told her we were in Nashville. She was surprised, but that isn’t unusual. She could easily have felt the same way at home. She was not confused about who I am, however. She talked about our relationship and how fortunate we have been. She gave special attention to our children and how proud we are about both of them. I don’t know how long we (mostly Kate) talked. I suspect it was no more than fifteen or twenty minutes. At that time of the morning it seems longer. Off and on during that time, she asked me several times where we were. One time after she asked, I told her. She said, “I probably won’t remember.” I said, “That’s all right. You can ask as many times as you want.” She said, “I already forgot. Where are we?”

At 2:15, she needed to go to the bathroom again. I helped her. When she got back in bed this time, she did not remember my name or that I am her husband. Neither did she remember that we have children. She wanted to know where we were. We went through our usual question and answer conversation.

Around 6:00, she woke up and seemed quite alert. She was very talkative. Once again, she talked about our relationship, the good times we have had, her mother and father, and our children. This was a longer conversation than either of the earlier ones. The last thing I remember her saying was, “What’s your name?” This time it took me a little off guard. She had seemed so alert that I expected that it was one of those times she remembered it.

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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.