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Something Unexpected

Every caregiver knows many of the daily tasks are routine. Along with those are a few unexpected things. They can be uncomfortable. We had one of those yesterday afternoon. As I have noted before, one side effect of Aricept is diarrhea. We have controlled that with an antidiarrheal. That has worked well. In the past few days, however, I’ve had the impression that Kate might be experiencing a little constipation. I’ve asked her about it, and she said she wasn’t. I have learned that she is often wrong about things like this. With that in mind, I decided to skip her antidiarrheal night before last.

Yesterday afternoon she had a minor problem with loose stools just as we were about to leave for her massage. She wanted me to show her where the bathroom is. I was surprised when we got there. She wanted me to tell her what to do. I showed her the toilet. She didn’t recognize it. I explained that she had to lift the lid. She was quite puzzled, so I lifted it for her, told her to drop her pants, and sit down. She said, “It’s got a hole in it.” I told her they were made that way so that one could urinate and defecate through it. Once she was on the toilet, I left her.

Very shortly, she called me. When I got to her, we were both upset, but for different reasons. I felt terrible about not giving her the antidiarrheal and thought she was upset about her accident. In the process of helping her, I discovered that she was upset about something totally unrelated.

This was one of those times that she began to talk as though we had been involved in something together. Thus, she thought I would understand what she was talking about. For me, it was like walking into an ongoing conversation and trying to figure out what in the world she was talking about.

What I heard first was, “I’m so sorry. It’s all my fault. I’m sorry to get you involved.” I felt bad and said, “It wasn’t your fault at all. It was all my fault.” She said, “Well, we both wanted to do the right thing.” As she continued talking, I got an entirely different, though never clear, understanding of what she was talking about. It was when she said, “I really wanted to help these people” that I understood that she wasn’t thinking about her diarrhea. It turns out that she imagined (my word, not hers) that she was working in some kind of overseas program helping the poor. I knew from past experience that it makes no sense to ask questions for clarification. That never works. It was better for me to play along as though I understood exactly what she was saying and why.

She continued to feel she had done something wrong. I tried to change her focus. I suggested that we both were trying to do something right and that things don’t always go the way you want them to go. She accepted that but never fully calmed down before we got to the spa for her massage. As soon as we were inside and saw her massage therapist, she looked somewhat calm, but tired.

After her massage, she and the therapist came out to the lobby. Kate was telling her therapist about this project she was working on. She mentioned how much the people need help and that they were smart. She expressed the importance of the project. I let her finish, and we turned around to leave.

As we walked out the door, she said to me, “My husband is working on it too. And he is really patient and can relate to them.” She continued telling me about her husband until we reached the car. I opened the car door, and she got in her seat. Then I leaned down to connect her seat belt, and she recognized me and said, “Oh, Richard, do you know him?” I told her I did. She said, “He’s a really nice guy. What’s his name?” I told her I didn’t know.

This may be a good place to interject that until she started talking about this project before we left home, she had seemed quite “clear-headed.” She hadn’t been especially talkative, but she seemed to know me as her husband and used my name several times. She has imagined things quite a few times over the past several years, but this talk about the “project” came on so suddenly that I was surprised.

She talked about the project all the way home. It was clear that my earlier thought was correct. She was talking about some kind of educational program in a foreign country. The only thing I can imagine that might have prompted this delusion is our experiences with two different trips with Overseas Adventure Travel. One was to Tanzania, the other to Peru and Ecuador. OAT has schools in both places and always takes its groups to visit them.

When we got home, she wanted to use the bathroom. When she came out of the bathroom, she asked me what she should do. I suggested that she work on her iPad in the family room, and I would join her. I put on some music and we relaxed there for an hour before going to dinner.

When we returned to the house, she worked puzzles on her iPad. I’ve mentioned previously that she is having greater difficulty working her puzzles. Last night she seemed especially confused. She couldn’t figure out how to work her puzzles and wanted me to work them for her. That seemed a bit strange, but she has wanted me to do that a few times in the past. I soon discovered that she did that because she thought we were choosing a puzzle to frame it and give to someone. She had a specific person in mind, but she couldn’t tell me who. She said it was somebody I had told her about. She wanted me to show her how to do the puzzles herself, but I tried in vain to teach her. I focused heavily on trying to get her to recognize the edge pieces, especially the corners. As hard as I tried, she never grasped it.

 

The good thing was that I was able to make her feel better. She thanked me profusely for helping her. She said I was the only one who recognized that she was smart. She commented specifically on the trouble she was having at that moment and the fact that she didn’t seem the way she usually is. That is one more sign of things that she is able to sense while being so seemingly “out of touch” with reality. The more she said, the more I began to think that she might be experiencing a reaction to Robitussin and/or Zyrtec. She started coughing night before last. I called her doctor yesterday morning. She suggested both of these medications. I told Kate about my suspicion and did not give her the evening dose.

I have since done a little exploration of the side effects of Robitussin and found that diarrhea is one of them. That could mean that my not giving her the antidiarrheal the night before may not be the cause of yesterday’s accident. I also noticed that I bought Robitussin-DM. When I did a search on dementia and Robitussin, I found something on the Alzheimer’s Association website that indicated that “DM” is contraindicated for people taking Namenda. That is one of Kate’s medications. Kate’s doctor had suggested either Robitussin or Mucinex. I think I will switch to the latter today.

Because she was having so much trouble, I got Kate to put away her iPad for the night and loaded Les Misérables in the DVD player. She watched intently for the next hour and didn’t want to stop for bed.

She slept through the night though she is coughing a little bit this morning. She is still in bed, and I am using my new video cam to check on her. I have discovered that the audio is particularly effective. After her first cough, I went to the bedroom. She coughed again, but it didn’t sound nearly as bad hearing it directly.

Today the sitter is supposed to come at 1:00. I am going to call the agency as soon as they open and cancel. I want to be able to monitor how well she is doing throughout the day.

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The Sitters, Music, and YouTube

What Kate and the sitters do has changed since I first engaged them a year and four months ago. That was a time when Kate and I were accustomed to going to Panera more frequently. We went almost every morning and some afternoons. When I arranged for a sitter, I bought a Panera gift card and told Kate and the sitter that they could go to Panera anytime they wanted. I remember how Kate’s eyes would light up when I said that. She looked at Panera as an outing. That was true even when it was just the two of us. With the sitter, I think it was also a way of breaking up the time until I returned.

That worked beautifully for almost a year. It began to change when Kate started sleeping later, and we weren’t going to Panera as often. I might have guessed that would make an afternoon trip even more appealing, but it didn’t. Like many things, I am not sure why. When I returned home, I often found that Kate was resting or had rested a lot while I was gone. That bothered me because I felt she wasn’t getting enough stimulation.

At the same time, I was looking for other ways to entertain Kate in the evening when we returned home from dinner. Our regular routine was for me to watch the evening news while she worked jigsaw puzzles on her iPad. I wanted her to have something else to entertain her, especially since she was beginning to have difficulty working her puzzles. I bought about ten DVDs of musicals that I thought she might enjoy. We would watch about an hour a night. Watching musicals like Les Misérables and Fiddler on the Roof could easily take us six nights. Kate loved it. She clearly has favorites. We watched Les Misérables seven times in one seven-week stretch last summer.

As I became more concerned about Kate’s time with the sitter, I decided to try the DVDs when the sitter was here. That also worked well. It was entertaining for both Kate and the sitter. I liked the idea of their engaging in something together even if it was a passive activity.

Gradually, I expanded the musical performances we watch at night by going to YouTube. Their selections are endless and growing all the time. The key is finding something that Kate will enjoy. During the fall, that meant a lot of Christmas music. I also discovered that The Tabernacle Choir seems to have one of the largest libraries of music videos. There are plenty of others as well. I often search for a particular singer, for example, Julie Andrews, Barbra Streisand, Sarah Brightman, Andrea Bocelli, The Three Tenors, etc.

My next step was to set up the YouTube videos for the sitter and Kate to watch. That has also worked well. One time during the Christmas season, I had set up one of the Christmas videos by the Tabernacle Choir. It was about an hour in length. I told the sitter she could turn it off at the end of the program. I also mentioned that if she didn’t, it would continue with other videos. When I got home four hours later, they were still watching Tabernacle Choir videos. They hadn’t stopped the entire time I was gone. They were both happy.

Since then I have been preparing something for them to watch at least once a week, sometimes more. Yesterday was one of those days. I selected a Bill Moyers documentary about the hymn “Amazing Grace.” It was about an hour and twenty minutes. As I have done before, I told the sitter that she could turn off the TV after the program was over or let it roll over to other videos. When I got home, they were both still watching the videos. “Amazing Grace” was over long before. They were now watching musical flash mobs. This is something I hadn’t thought about. If I had, I would have probably searched for them. Instead, they had simply come up according to the algorithm used by YouTube.

Mary told me that Kate rested a couple of times during the videos but kept coming back. I suspect that was a result of her liking some more than others. The important thing is that I have found a source of amusement for Kate apart from her iPad. The bonus is that it also helps her pass the time while I am gone. At the moment I am not planning to have a video every time the sitter comes, but once or twice a week might work well.

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Confusion and Something New

Yesterday Kate and I had a nice day although it began with her not knowing that I am her husband. She got up on her own after I had played about fifteen minutes of soft music. My video cam alerted me to the fact that she was getting up. I went back to the room where she greeted me very normally. She asked about her clothes, and I told her they were on the chair beside the bed. As I helped her up from the bed, she said, “Are you my daddy?” I told I was her husband. She was surprised but did not seemed especially disturbed, just confused that she didn’t know/remember that. I decided not to make an issue of it and walked her to the bathroom where she took a shower. On the way she asked again if I were her daddy. When I said I wasn’t, she asked, “Where is he?” I said, “Texas.” She said, “Where are we?” I told her we were in Knoxville, Tennessee where we live. She looked puzzled but did not say anythng more. After her shower, I helped her get dressed. This was one of those times she wanted to do things herself but kept asking for my help.

I don’t recall our talking again about my being her husband until we were at lunch. She was in a playful mood and teased me a bit. In response to that, I said, “I would marry you again if I could.” She reacted as though that would be terrible. I said, “You wouldn’t like that?” She gave me a look that I interpreted as “Are you kidding?” Then I said, “We could just keep on living together.” She reacted quickly with a disapproving look and said, “I’m surprised you would even say that. What would your mother say?” Isn’t it interesting how powerful such feelings are?  This is coming from deep within the recesses of her mind.

In the course of our conversation I mentioned our children. She asked their names and wanted me to tell her something about them. We never got back to talking directly about my being her husband, but it became clear that she recognized that and was happy about it.

I think I have mentioned that she is sometimes confused about the words she wants to use. Sometimes she uses a word that is obviously the wrong one. Often she recognizes it is wrong and will say, “You know what I mean.” Sometimes I do know. Sometimes I don’t and say so. Other times I say I know when I don’t and hope that when she says more, I will understand.

Yesterday I was surprised when something new happened. She didn’t understand the meaning of two words I used in our conversation. The first occurred when I said that someone we saw at another table looked like a student. She said, “What’s that?” I helped her understand by reminding her (she doesn’t remember) of the time she was teacher. It wasn’t long before she asked me what the men at the next table were talking about. I told her I didn’t know, but it looked like they were businessmen. She said, “What’s that?” Then I explained what a business is.

The night before she asked the wife of the couple we had dinner with what the child at a nearby table was holding. She told Kate that it was a phone. Kate asked what she was doing with it. She explained that the child was probably playing a game. I suspect part of Kate’s not understanding what the child was doing relates to her eyesight. I can’t tell how much relates to her Alzheimer’s and how much is a result of the cataract in her left eye.

Twice yesterday afternoon, she saw her iPad and asked me what it was. I told her it was her iPad, and she said, “What do you do with it?” I told her she could work jigsaw puzzles on it and opened the program for her. She continues to be able to work her puzzles, but it is getting more difficult for her. It is like many other abilities. Sometimes she gets along fine. Other times she runs into problems.

All of these things signal how much her world and mine are changing. I can’t help wondering what life will be like six months from now but not really wanting to know.

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Feeling Insecure

It has been a year and four months since I first got a sitter to be with Kate for four hours three days a week. I put off making the decision to do this a long time. I was concerned about how Kate would respond. It seemed to me that she felt pretty secure that she could take care of herself and, thus, didn’t need someone to stay with her. When I told her minutes before the sitter’s first visit, she asked me why the person was coming. I told her I would feel more comfortable not leaving her alone. She said, “Oh, okay.” That was it. With only a few exceptions, she has not seemed to mind having a sitter since then. Yesterday was one of those.

I had tried gently to wake her in time for her to shower and dress before the sitter arrived. I didn’t push because I have learned that if she didn’t want to get up, Valorie could take care of helping her. At 11:15, she asked if she could stay in bed a little longer. I told her that was all right.

When Valorie arrived, I went back to the bedroom and told Kate that she was here and that I was going to the Y. She gave me a disapproving look but didn’t say anything. Valorie walked in the room to say hello, and I said my goodbyes.

When I returned four hours later, they were both seated in the family room. Kate was resting with her eyes closed. She didn’t show any sign that she was glad to see me. Valorie got up to leave and said goodbye. Kate didn’t say anything. As I walked Valorie to the door, she told me that she had helped Kate get to the shower and dressed. She said that twice Kate was very abrupt with her and said something like, “I can do that myself.” Valorie said when that happened, she backed off and let Kate do it on her own.

I could easily envision what happened. I told Valorie she is sometimes the same way with me. In this particular case, I believe Kate might have been more demonstrative than usual because she was bothered by my having left her. After Valorie was gone, I went back to Kate and told her I was glad to see her. She said, “I’m glad to see you too.” Her tone of voice led me to translate that to “Boy, am I glad you are here.” We didn’t say anything more at that time.

Later as we were going to dinner, I said, “I really enjoy being with you.” With some emotion she said, “I enjoy being with you too. <pause> I feel comfortable with you. I feel secure that you won’t let anything happen to me. I feel safe.” This is not the first or the second time she has said things like this. I don’t think she is afraid of being the object of an aggressive act by someone. I know that most (almost all) of the time she is unsure of where she is and what is going on around her. I am the constant helpmate for her. She has a feeling of complete trust. When I am not with her, she loses that sense of security. I believe that is especially true when she has a sitter with whom she has spent considerably less time than she has with me.

I have two emotional reactions to the situation. I feel like having a sitter less often. This is a case in which I will let my head take charge over the emotion. In the long run, I am going to need more help from sitters, not less. I think this is just a rough spot in the road. It isn’t one that should alter my overall plan.

The other emotion is a feeling of responsibility. I feel she needs me more now than ever. I want to make sure that the rest of her life is as smooth as it can be. That feeling was reinforced by a brief conversation we had last night.

We went to dinner with a couple we know from our music nights at Casa Bella. We ate at a new German restaurant near their house. We had never been there before, and I believe Kate was a bit uneasy. We got a durprise when we walked in. There is a bell connected to the door of the entrance. It has a surprisingly loud ring each time the door is opened. Kate is very sensitive to noises. (I scared her the other day when I turned on the faucet in the laundry. The sudden noise of the water frightened her.) The bell shook her momentarily. The menu items were very different. She initially tried to read the menu but quickly gave up. She had trouble following our conversation and had to ask questions to help her understand. She often asks me to slow down when I am talking to her. Following three other people, each of whom is a talker, is an impossibility. I really felt for her.

When we got in the car to go home, she said, “Richard, (yes, she remembered my name) I don’t understand what is happening. I’m so confused.” I asked if she could explain a little more. She couldn’t. I told her I wanted to help in any way I could. I reminded her of our wedding vows, specifically the part about “sickness and in health.” I told her I would always be with her. She said she understood that and has never doubted it. I realize, of course, that we attach different meanings to that. I know where we are headed. She doesn’t, but she does know she can count on me. I intend to honor that promise.

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Our Sunday

Yesterday morning Kate got up to use the bathroom about 7:00 and went back to bed. I was in the bathroom when she got up. She was quite cheerful and seemed more awake than usual, especially at that hour. When she hadn’t stirred by 11:30, I checked on her. She was lying in bed awake. We spoke to each other, but she didn’t seem as clear-headed as she was earlier. I asked if she were confused. She said she was. I said, “I think I could help you? Would you like me to start with who I am?” She said yes, and I said, I am Richard Creighton.” She said softly, “I know that.” I said, “Do you know I am your husband?” Again she answered, “Yes.” “Do you know you are Kate Creighton?” She also knew that. I decided to go in a different direction. I said, “I have an idea. I think if you get up and we go to lunch, you’ll find things will clear up. We’ll have a nice meal and a good dessert.” Then I suggested the first thing would be to take a shower and that would help to wake her up. That’s what she did. Although she wanted some guidance from me, she still expressed a little independence. She didn’t want me to help her out of bed or to the bathroom. She just wanted me to tell her where the bathroom was.

Following her shower, she got back in bed but she didn’t seem confused at all. By the time she had rested a little longer and gotten dressed, it was after 1:00. We got to Andriana’s shortly after 1:30. She was particularly concerned with Frank Sinatra’s name yesterday. We had been there only a few minutes when she pointed to his picture and asked him name. That was the first of many. One time when she asked his name, I said, “Frank Sinatra.” She replied, “Frank Sinatra. You’ll probably have to tell me again. What’s his name?” She wasn’t kidding.

We were back home a little after 3:30 and spent the balance of the afternoon relaxing by a fire in the family room. Not too long before dinner we had a nice phone call from our son, Kevin. Then we went to dinner and returned home where I watched the Patriots and Chiefs game. She worked on her iPad until just before 10:00. It was a nice day.

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The Day Kate Was Diagnosed With Alzheimer’s

Today is a day that is hard for me to forget. It was eight years ago that Kate was diagnosed with Alzheimer’s. I just finished a quick look at the posts I made during the first ten days after that. (http://livingwithalzheimers.com/the-diagnosis-and-following-ten-days/) At that time we were experiencing all the emotions that surround such news. Kate was initially relieved but very quickly became scared and also angry.  Fortunately, neither of the latter two emotions was long-lasting. Although we were not surprised with the doctor’s news, the reality shook us. We had to sort through those emotions and figure out how to move forward.

At that time the future seemed very blurry. We were simply trying to grasp the diagnosis. We experienced a lot of feelings. We talked about the diagnosis and our future and tried to understand its implications. We couldn’t escape thinking about all the negatives that go along with the disease.

One of the things that struck me was how quickly we went into planning mode. We have been there ever since. That’s not because our plans were wrong. It’s because the situation is always changing and requires answers to new questions or problems. Our initial plans focused on two general areas. First, we needed to address legal and financial issues. That meant meeting with our attorney, accountant, and insurance man. Second, we wanted a plan for our lives in order to take advantage of whatever quality time we had. Somewhere along the way we will probably discover things we overlooked, but that foundation has served us well so far. I thought we would have far less time for living than we have. I never expected that we would be getting along so well after eight years. That is largely because I didn’t understand how much pleasure we could have after Kate’s memory was almost gone.

As we thought about the things we wanted to do, we gravitated to the things we already enjoyed. That included music, theater, travel, and time with family and friends. Each of these has played a significant role in our “therapy.” What is even better is that we are still able to enjoy most of the things that have led to a very happy marriage.

Looking back, I am glad that we responded actively and not passively. At this moment in 2019, I realize how much life we can enjoy while “Living with Alzheimer’s.” I still don’t know how long our good times will last. I know that the time is diminishing rapidly now. We stopped all major travel in January 2016. We made what may have been our last trips to our children’s homes (Memphis and Lubbock) for Thanksgiving and Christmas. Movies are almost a thing of the past. I sense that non-musical theater and opera are on the way out. Music and social occasions like dining out play an even larger role in our lives now, but Kate’s sleeping late has cut down on our morning social engagement at Panera and our afternoons at Barnes & Noble. I plan to continue our day trips to visit friends as long as we are able. I don’t see anything that would stop that right now.

I can’t help feeling sad as I watch Kate change and imagine what lies ahead. I also recognize that our own experience with Alzheimer’s has been far better than that of most others. The past eight years are among the best of our marriage. I am grateful for that. I also feel a strong sense of determination to see that we make the best of the future no matter what it may bring.

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Follow-Up to Yesterday’s Shaky Start

As Kate had wanted, I went back to the bedroom to wake her about 10:30. Although she was sound asleep, she woke up easily. I reminded her that she had asked me to wake her, something I don’t recall her doing before. (I jumped on that opportunity.) She was a little groggy but got right up with a little help. I walked her into the bathroom for her shower and turned on the water. As she took off her night gown, she asked my name. I gave her my name but didn’t mention that I am her husband. She didn’t ask.

When she finished her shower, she asked if she could lie down a little bit. I told her that would be fine. She asked me to come back and get her up. I came back about twenty minutes later. She got up willingly and asked about her clothes. I picked them up from the chair where I had put them earlier and put them beside her on the bed. I gave her a bra and said, “Let’s start with this.” She looked at it strangely. I explained that she could put it on over her head just like putting on a top. I told her it was easier than most bras. She looked at me and said, “How do you know so much about bras?” I chuckled and told her that I had observed her having some difficulty with her other bras that fasten in back and went online to find something easier. I found a company that makes clothing for seniors and ordered several of them.

Although she asked my name off and on throughout the day, she seemed to know that I am her husband. Again, I didn’t ask, but we did talk about her parents and our children. We relaxed at home in the family room after lunch. About forty-five minutes passed. Then she asked, “What is your full name?” I told her. She asked me to repeat it. I did and said, “I’m your ‘Hubby.’” She laughed, not in a way that suggested she didn’t believe but just the opposite.

She continued to work on her iPad for at least another hour before deciding to rest. I thought that was a good idea since we were going to an opera (Tosca) last night and would get home late. This was only the second time in about a year that we have attended an evening event this late. All the music nights at Casa Bella begin at 6:00 and end around 8:30. The opera started at 7:30. We didn’t get to bed until 11:30. That’s a good bit later than our normal routine.

I had been looking forward to the opera and enjoyed it; however, Kate’s experience and mine were quite different. We bumped into a number of people in the lobby we have known from various places around town. I enjoyed seeing everyone, but I think it was a bit overwhelming for Kate. She didn’t appear to recognize anyone. Fortunately, each of the encounters was brief. We were seated beside and behind people we knew. Kate talked with them at the intermission.

When it was over, she was eager to get home. She said she hadn’t been able to understand anything and had “just tuned out.” She said she enjoyed the music but didn’t know what was going on. That fit with my impression during the performance. Several times she responded enthusiastically to a number of the arias. Often she is able to enjoy various performances whose plot she can’t grasp. That happens when she can enjoy the characters or situations in which they are involved. That wasn’t the case last night. In two weeks we are going to see the Live in HD at The Met’s production of Carmen. That will be a good test. If she doesn’t enjoy that, live opera may soon be a thing of the past, not because of the music but a lack of understanding of the plot. I am hopeful that she will continue to enjoy opera night at Casa Bella for quite a while. In that case, the focus is on the music itself.

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A Day of Contrasts

At 9:25 yesterday, I walked down the hallway to get Kate’s clothes when I heard her say, “Hey.” Before I could respond, she said it again. I hear this a lot now. It can mean different things. Often it means she wants something. Sometimes she is just trying to find out where I am. Yesterday morning, she was just letting me know she was awake and, perhaps, that she needed clothes. When I got to the bedroom, I found that she was still in bed, awake but not ready to get up.

It was a morning when she wasn’t in a particularly good mood. She acted as though I had said something that annoyed her. A little later, I asked her if I had said something that bothered her. She said, “No, but you probably will.”

Nothing that Kate said or did indicated that she was happy to see me. I chose to ignore this and simply help her get ready for the day. From past experience, I have learned that she won’t maintain that mood for long. I don’t know what precipitates these moods. I believe that her feelings may be a result of my control over so much of her life. I know that she doesn’t always like that. I also know that I often have to work to get her up or to get ready to go places. It could be that when she sees me come to her bedside in the morning, she naturally thinks that means trouble.

It turned out that I made the right choice to avoid a discussion with her and to help her getting up. I helped her dress, got her medicine for her, got her cup and iPad to take to Panera, got her jacket, and helped her into the car. The results weren’t immediate but did occur rather quickly. My own analysis of the situation is that focusing on the every-morning tasks provides Kate with an opportunity to experience some of the things I can help with and for which she recognizes she needs help. When that happens, she is more appreciative. In the meantime, she forgets that she was irritated, and life goes back to normal.

Because she was up early and did not shower, we got to Panera in time for her to have a muffin and enjoy time to work on her iPad before going to lunch. By the time we got there (a 4-minute drive from our house), her mood was vastly different. She was back to normal. As we started to walk across the parking lot to the door of the restaurant, she automatically reached for and grasped my hand. At that point, I felt sorry for her. Not too long before that, she had expressed irritation with me. Now she needed me for security.

We faced a more dramatic expression of her dependence on me when I was about to leave for the Y after the sitter arrived yesterday. When we got home from lunch, she said she wanted to relax in the family room. She picked up a 3-ring binder of family information and photos I had made for her several months ago. It has the names of parents and grandparents as well as information about us, our marriage, and our children. She hadn’t taken much interest in it until yesterday. I am sure she didn’t even recognize what it was when she picked it up and sat down on the sofa. Even though I used a very large font, it is hard for her to read. As she looked down one of the pages, she said, “Hey, here’s your name.” I walked over so that she could show me. I stood beside her as she looked at the information on that page, and I read it for her. She was quite interested.

About that time, Mary arrived. After greeting her, Kate asked her to sit on the sofa with her to look along with her. Then I told them I would be leaving for the Y. When I said that, Kate got a very sad look on her face and said, “You’re leaving? Can’t you stay with us?” It was a radical contrast with her enthusiasm for the information she was looking at. I suggested that Mary could read it to her. She said, “But this is something you would enjoy too.” It may be my imagination, but I think she looked even sadder when she said, “Why can’t you stay? I want you to.”

As with so many things that happen, I had to make a snap decision. I knew it wouldn’t be long before we could read the entire book. I stayed, and I am glad I did. Kate and Mary sat side by side on the sofa while I stood behind them looking at the book over their shoulders. I had written the book in a bullet-point style to make it easier for Kate to read. Because I was with them as they went through it, I could elaborate on much of the information. Kate loved it. It was just like the pleasure of a young child as her parent reads a favorite children’s book to her.

When we finished, I could tell it was a moment when I could make an easy exit. When I said I was going to the Y, Kate didn’t make any effort to stop me. She was happy, and I was on my way.

One other thing happened after dinner that I thought was both interesting and informative. We had walked to the car after leaving the restaurant. I have been helping Kate with her seat belt recently because she has had more trouble getting buckled up. When I started to help her last night, she stopped me and said, “I can do that.” That led to a very brief conversation. I said, “I’m sorry. I know that I sometimes try to do too much for you.” She said, “Yes, you do, but I know you’re just trying to help.” I said, “I will try to do better.” Then she said something that surprised me. “No, don’t change. It’s better if you do too much than if you do too little.” What surprised me was that her instruction to me involved a higher level of rational thinking than I believed possible at this point. This was not simply an expression of a feeling of need arising from her intuitive ability. It did involve that, but she had to put that together with another thought, that if I did less, she might need help when I didn’t provide it. This may be a little thing, but I was glad to see that she put these together and expressed it so clearly. As she sometimes says (though not in a long time), “Don’t count me out yet.”

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A Shaky Start

I had just finished my morning walk around the house just after 8:00 this morning when I checked the video cam in our bedroom. I saw that Kate was standing by her side of the bed. I soon realized that she had gotten up and gone to the bathroom. I went to the room and asked if she needed anything. She asked if she could go back to bed. I told her it was still early and that would be just fine. She said, “Oh, good.”

Once she was back in bed, I could see that she was “uneasy.” It didn’t look like she would go right back to sleep. She asked me if she had to go anyplace. When I told her we didn’t have anything on our agenda today, she breathed an audible sigh of relief. Then she said, “Are you my daddy?” She paused a second and then added, “Or something else.” I said I was her husband. She had a puzzled look on her face. Then she asked, “What’s your name?” She asked me to repeat it again. She said, “I’m going to try to memorize that.” <pause> “Who am I?” I said, “You are Katherine Creighton.” I mentioned her parents, and she asked, “Have I ever met them?” I said, “Yes, they took care of you when you were a little girl and loved you very much.”

She told me she wanted to go back to sleep and asked if I would wake her up. I told her I would but that she could still sleep a while before getting up. I told her I would be in the kitchen if she need anything. Then she closed her eyes. She still seemed a bit uneasy. I asked if she would feel better if I stayed in the room with her. She liked that. I went to get my laptop.

When I returned, she said, “I’m scared.” I sat down on the bed beside her and asked what she was afraid of. First she said, I don’t know.” Then she said, “Do you think they will like me?” I said, “Who do you mean?” She couldn’t tell me, and I said, “You don’t have to worry. Everybody likes Kate. I rubbed her back and she began to relax. She said it felt good. In a few minutes, I got up and went to the chair on my side of the bed where I am writing this post. She is sleeping soundly.

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A Day of Confusion

For the second time this week Kate did not recognize me when she woke up. These occurrences come only days after my saying that she almost always recognizes me as someone she knows and trusts. That is still true, but it makes me question my optimism as to how long this will last.

As I have seen so often, this failure to recognize me came with a mixture of other signs that she sensed more familiarity than her rational ability could express. She didn’t display any sense of surprise when I walked into the room. She appeared to respond to me as she normally does. Then she said, “Who are you?” I said, “Do you recognize me at all?” She said she didn’t, and I gave her my name and told her I am her husband.” She seemed more puzzled than usual by this news. She didn’t recognize either my name or that I am her husband.

At that point, I decided not to make this a point of discussion. I was confident that with a little time she would put it all together. I suggested that she get up and let me take her to lunch. She responded the way she always does and got up. She let me help her dress. She went to brush her teeth, and I went to the kitchen. In a few minutes, I heard her say, “Hey, where are you?” That, too, is very normal. She doesn’t know her way around the house and looks to me to tell her where she should go. As I walked toward the family room, I said, “I’m in the kitchen.” She was standing in the doorway coming into the family room from our bedroom and saw me. We went back to the kitchen where I had her morning meds waiting for her. When she had taken them, I picked up our iPads and cups and we left for lunch at Panera.

While waiting for our order, she asked my name. I told her and said, “I am your husband.” She seemed puzzled and asked how long we had been married. I told her. She didn’t question me. Instead, she asked me her name. That led to her asking if we have children. When I told her, she wanted to know their names. That led to further conversation about our marriage. I told her we had had many good times during our marriage. She agreed and asked me to tell her some of them. After that, I didn’t see any obvious signs that she didn’t know me.

We stayed at Panera about an hour and a half and then returned home where Kate rested almost two hours. Then we went back to dealership to pick up my car that I left the other day. When the service rep walked us to our car, I walked directly to my side. Normally, I would have opened the door for Kate and helped her get settled in with her seat belt. Before I got in the car, I looked back and she was standing at the rear of the car waiting for me to tell her where to go. It is very common for her not to know which side of the car she should use. I know this but had fallen down on the job. I walked her to the passenger’s door. Once she had gotten in she didn’t know where to put her cup. The service rep was waiting for me at the driver’s door. She is the same one I had given my first “Alzheimer’s card” two days before. If I hadn’t already given her one, I would have this time. There was no need now. She understood.

Last night was Broadway night at Casa Bella. Kate’s confusion continued. She was seated beside the woman whose mother started the restaurant almost 79 years ago. We sit with Signora Rizzo and her husband for all the music nights. We hadn’t been there too long before Kate leaned over to the Signora and said, “What’s the name of this restaurant?” Everyone at the table is aware of Kate’s diagnosis, and Signora Rizzo responded beautifully. She told Kate the name of the restaurant and that her mother had started it. She also gave her a little of the restaurant’s history. Kate was surprised and interested in what she had to say.

I’m not sure why, but it took longer to get our meals last night. Several times after we had ordered, Kate asked me if we had ordered and when we were going to eat. Finally, she said, “Does this place serve food?” Signore Rizzo, who was seated beside me, said, “I was wondering the same thing, Kate.” We have always enjoyed sitting with this couple. The way each of them responded to Kate last night is consistent with the kind of people they are. I hope we have many more music nights together.

These little public incidents of Kate’s confusion are trivial. No one was embarrassed or disturbed, but they do make me wonder what lies ahead.