The Mixture of Happy and Sad Moments

Throughout the time that Kate and I have been “Living with Alzheimer’s” I have repeatedly told people that she is doing “remarkably well.” That’s exactly what I would say if someone asked today. I’ve tried to be open about the fact that a simple answer doesn’t adequately convey what life is like for us, but it does express what I believe is a central truth. We have lived well from the very beginning, and I have wanted to communicate in my daily interactions with people and through this blog that it is possible to experience joy while living with dementia.

On the other hand, living with this disease is no cakewalk. Since Kate’s diagnosis 8 years and 4 months ago, our world has gotten smaller. One thing after another has dropped from our lives. At the present time, I sense that we are undergoing a more rapid change. We have had an abundance of happy moments. They used to occur all day. Over the past year, we have encountered moments of Kate’s confusion and fright. It seems that we are beginning to experience and happy and unhappy moments during the same day.

Yesterday was a good example. The morning (starting at 3:30) was rocky. When I woke her at 11:00, she got up easily and was in a pleasant mood. She is, however, more sensitive to anything I do that rushes her. While dressing, for example, she wanted direction about what to do. I said, “Let’s put on your bra and pants and then your top.” I had given her too much information. She snapped at me, “Wait a minute.” That is something I hear more often these days. I told her I was sorry. Then she said, “I’m sorry. I shouldn’t have said that.” She wasn’t as cheerful after that. This kind of exchange between us is more common now. I have to be very careful to simplify all my instructions.

On the way to lunch, I played music that I know she enjoys. Before we got to the restaurant, she was her cheerful self again. That continued through lunch. After lunch, we relaxed at the house until it was time to pick up a friend we were taking to see Mamma Mia at a local theater. She had enjoyed the movie, and I was optimistic that she would like the theater production as well. After we were in our seats and the show was about to begin, she wanted something to drink. I told her that food and drinks were not permitted in the auditorium. She became irritated about that. She is less patient than she used to be. When she wants something, she wants it right then. Fortunately, she didn’t create a problem, but she wasn’t happy. During the show, Kate kept looking at me and rolling her eyes. She wasn’t enjoying herself. At intermission, the three of us talked briefly. As it turned out, none of the three of us thought the quality of the performance was up to par. We decided to leave.

We went to a nearby Starbucks where we had a nice visit with our friend. I think Kate enjoyed herself, but it was a challenging experience for her. There was so much she didn’t understand. She kept asking for clarification and repetition of names. I have noticed the same kind of thing in other social situations. In every case, including the one yesterday, the people we have been with understand about Kate’s Alzheimer’s, but it does make a change in the dynamics of conversation.

We took our friend home and then went to a Mediterranean café. While I went to the counter to order, Kate arranged paper napkins and utensils on the table. She used napkins as a placemat with the knives and forks neatly arranged. We had a very pleasant meal. Kate is, however, getting messier. A Greek salad came with her meal. She doesn’t like salads and throughout the meal took the greens off her plate and put them on her napkin (placemat). That created a mound of salad around her plate. She also had rice. That meant a fair amount of rice went with the greens. It turned out that her using a napkin as a placemat was a good idea. When she was finished, I simply picked up the napkin with the greens and put it on my empty plate.

I don’t mention these things because they are big problems. They are not. They are really minor. My point is that Kate is changing. She is beginning to exhibit more of the signs that accompany dementia. It saddens me to see this and to recognize the future is becoming imminent .

Despite the changes that have occurred in the past, we focused on the good things that remain. I am hopeful that we will be able to continue doing so as we experience a greater mixture of happy and sad moments. I suspect that will be harder.

Morning, Noon, and Night

As a rule, Kate is happy, but there is clearly some variation that occurs from morning to night. Predicting how she feels in the morning is difficult. She has never been a morning person though she got up early for years without complaining when she was working professionally and playing her role as a mother. Over the course of her Alzheimer’s she has found it harder to get up. Not only that, but she is much less clear-headed now. That varies from one day to the next. Sometimes she seems quite alert. Other times she is quite groggy.

The good news is that she almost always becomes more alert and cheerful as the day progresses. There are exceptions. I reported on one of those two days ago when she didn’t talk much. She didn’t seem unhappy. She was just less energetic. Day before yesterday she was unusually upbeat. Yesterday she was somewhere in between, but happy, and more upbeat from lunch until bedtime.

I have tried to understand why her mood in the afternoon and the evening are the most predictable. I think the answer may lie in the weakness of her rational abilities and strength of her intuitive ones.

Her rational thought processes are weakest upon waking. That actually makes sense to me. I think that is true for many who don’t have dementia. We generally recover quickly as we look around us, especially if we have contact with a spouse or other family member. It doesn’t work as easily for people with dementia. During the day, Kate often doesn’t recognize that she is in our house or who I am, but she is groggiest in the morning. It’s hard for her to put things together.

She is usually able to reach a comfort level in a relatively short period of time. A few times it has taken as much as an hour or two. Here is what I think is going on. The longer she is up, the more contact she has with the things in her environment. That gives her a greater sense of familiarity with me and with our home. It’s not that she necessarily remembers her name and mine or our relationship, but she feels comfortable.

That contrasts with the way she feels upon waking. Then everything seems strange. Fortunately, there have only been one or two times when she didn’t seem comfortable with me. That enables me to help her find things in the environment (for example, looking out the window to our patio and back yard) or telling her things (like her mother and father’s names) that give her a sense of “place.” As we go about our normal routine, she encounters a variety of experiences. Throughout the day, she has more experiences that increase her comfort level.

For several years, I have thought the time after dinner is the best time of the day. A large part of that is because Kate is more at ease, but I think there is more to it than that. By that time of day, she is tired. She really wants to relax. The same is true for me. I have spent the entire day focusing on ways to make her day interesting as well as tending to the many other responsibilities of being her care partner. That includes taking care of the house and all that goes along with it.

When we return home from dinner, she likes to sit in her chair in the family room and work her jigsaw puzzles on her iPad. I like to relax by watching the news. About 8:00, we adjourn to our bedroom where I put on a DVD or YouTube videos of musical performances. We both enjoy the music while she continues with her puzzles, and I often take care of email correspondence, check in on Twitter, or work on my blog. At that time, we are both free of any great demands. Neither of us talks much during that time, but we are both happy doing “nothing” together.

Being alert and happy in in the afternoon and evening does not mean any improvement in Kate’s symptoms associated with her Alzheimer’s. She can be happy and confused at the same time. In fact, it is rare for her to be confused and unhappy. I have reported on each of the times this has occurred. It doesn’t seem like that has happened more than five or six times.

As I have said before, the way I feel is heavily influenced by her mood. I think that has always been the case, but it has become especially pronounced since her diagnosis. I think that relates to the loss of her rational abilities. I have learned to accept the fact that her memory is almost gone. As a result, our relationship is heavily dependent on sharing her intuitive abilities. When she enjoys music, children, social experiences, and nature, especially “all the green” of trees and shrubbery, I enjoy both the experiences she is having and, perhaps more importantly, seeing her enjoy herself. I understand those pleasures can continue close to the end of this journey. If that is so, many happy moments are in our future. If not, I’ll treasure the ones that came before.

Mood and Conversation

In my previous post I commented on Kate’s less-than-cheerful mood and a change in her conversation. She just hasn’t been talkative lately. That changed yesterday. I wish I could remember exactly what she said, but I can’t. All I can tell you is a summary of what happened.

She was up about 7:30 and went to the bathroom. This was a day when she wanted to express her independence. She didn’t want my help. I walked her to the bathroom. Then I went back to the kitchen where I could watch on the video cam to see when she had finished. After a while, I hadn’t seen her and wondered if she had come out without my noticing. Then I heard the shower. I was happy about that since she was due for one. I also knew that she would want to return to bed afterwards. That would give me a little time to take care of a few things I needed to do. It wasn’t too long before she was in bed again.

From past experience, I knew that she could easily sleep another couple of hours, but I kept checking the video cam. (In case you wondered, my iPad with the video sits to the right of my computer.) At 10:45, she had shown no sign of getting up. I went back to wake her. When I approached the bed, I saw that she was awake and asked if she would like me to take her to lunch. She gave me a confused looked as though she wasn’t sure who I was.

When I sat down on the bed, I said, “I’d like to take you to lunch.” She said, “Where are my clothes?” I always put them on the chair about three feet from her side of the bed, but she can’t remember. I pointed and told her where they were. Then she said, “What do I do now?” I told her she should get dressed. As I helped her into a sitting position, I noticed that she looked frightened. She said, “I sure am glad to see you.” On one or two other occasions, she has been awake but didn’t get up because she didn’t know what to do or where she was. I quickly assumed (correctly) that was what happened this time. She was shaking as she talked. She said, “I didn’t know what to do.” Then I felt terrible for not checking on her earlier, something I will watch more carefully in the future. I apologized and told her how bad I felt. When I did that, she immediately tried to ease my guilt. She said, “Well, it’s going to be all right now? <pause> Isn’t it?” I nodded, but she wanted me to be more affirming and again said, “Isn’t it?” I assured her it was. She still appeared to be shaken by the experience.

Unlike her earlier desire to assert her independence, she wanted me to guide her through every step she needed to take to get ready. She was too emotional to think straight about everything she needed to do. On a normal day she has difficulty, but the emotional experience she had had exacerbated the problem. Several times she reiterated how scared she had been.

On the way to, during, and after lunch she was quite talkative. While we were eating, we had a conversation similar to one I reported on a couple of weeks ago. The first one involved Christopher Columbus. She asked who he was. I tried not to get into anything too overwhelming for her to understand. She asked questions about everything. That meant it did get too complicated for her, but she was still eager to know more. I had to repeat just about everything two or three times without her ever getting it, but she was interested anyway. Somehow the conversation drifted to food that was in the New World and introduced into the Old. I Googled a list of such items and read them to her. She was like a little child discovering something she had never thought about. She couldn’t believe they didn’t always have things like potatoes or corn in Europe before then.

The next topic was World War II. She started this one when she brought up the topic of discrimination. I mentioned the Holocaust and Hitler. We didn’t get too far on that one because she got too emotional. She was both interested and shocked. She is more emotional now and starts to cry at both happy and sad things she hears about.

We got home a short time before the sitter arrived. I didn’t tell Kate that Mary was coming. I just let her in. Kate welcomed her. I told her I was going out for while. She said, “We’ll be fine.” Once again, I left with a good feeling. When I returned, they were sitting in the family room talking happily.

After Mary left, we went to dinner. When we returned home, we sat down in the family room. Ordinarily, I would watch the news while she works on her iPad. She had been in such a good mood that I didn’t want to break it by watching the news. I turned on a Barbra Streisand album as Kate started to open her iPad. The first song I selected was “Send in the Clowns.” It has always been a favorite of hers. Instead of working a puzzle, she put the iPad down and just listened. Then I to selected a number of others that I knew or thought she would like. We sat there together for an hour just enjoying the music. She loved it. I did as well, but the real treat was sharing such a happy moment together. I feel fortunate that we can have moments like these, especially this late in her disease.

Not a Cheerful Day

Yesterday was a nice day, but Kate was not in a cheerful mood. That was most obvious in her conversation. It began first thing in the morning. She didn’t give me a smile when I went in to get her up. Although she didn’t ask, I am pretty sure that she didn’t recognize me as her husband. On the other hand, she wasn’t alarmed. She was more independent. She didn’t want my help when I gave her my hand to help her from the bed. She told me she could do it herself. As I walked her to the bathroom, she changed her mind and wanted to hold my hand. Once in the bathroom, she responded to me as someone she recognizes and trusts.

We had lunch at Casa Bella with one of our associate pastors and his wife. She has always been drawn to him, but she no longer remembers him or his wife. I reminded her of how much she enjoyed his preaching and teaching. It didn’t seem to ring a bell. The lunch went well. We enjoyed being with them. Kate talked very little. I don’t believe it related to her not remembering them. I think she was just not in a talkative mood yesterday.

Her “Big Sister” photo album was the hit of the day for her. She took it with her when we went to lunch but left it in the car. We came back to the house where she spent some time looking at it before and after our appointments for haircuts and again after dinner before working on her jigsaw puzzles.

She didn’t talk much going to and from our hair appointments or lunch and dinner. Neither did she say much while we eating last night. She didn’t seem depressed at all. She enjoyed herself. There were times when I talked to her and expected a response but didn’t get it. As I think about it now, she hasn’t been very talkative over the past week or so. This comes after a few weeks when she has been. I don’t have an explanation or even a guess as to why. It’s one of those many mysteries. I do know that I like it much more when we have conversations even if they are repeats of the same ones we always have.

Insecurity at Casa Bella

Yesterday was not a typical day. Kate seemed to be in a cheerful mood, but she was also irritable off and on throughout the day. I observed that very early when I told her I thought she should shower before getting dressed. It had been four days since her last one on Sunday. Each of the previous mornings I had encouraged her but let it go when she resisted. I did the same yesterday.

We commonly hear about anger and violence as symptoms of people with dementia. There is another school of thought that suggests that such behavior is not a direct symptom itself but a bi-product of symptoms like confusion and misperception. According to this interpretation, anger and violence are or can be natural responses to the way the brains of people with dementia work (or don’t work).

If I employ this line of thinking to what happened between Kate and me yesterday, I would say that Kate wasn’t just in a bad mood, she may have been responding to the way I told her it would be good for her to take a shower. In fact, I don’t believe I was as gentle in my suggestion as I usually am. If I had thought of a gentler way to do it, she might have willingly agreed to shower. Instead, she dug in her heals. I didn’t push her.

I told her I had her clothes for her, and she thanked me. When I started to help her dress, she was resistant. She said, “I can do that myself.” Ultimately, she had to have my help with her bra and her pants, but she was determined to be as independent as possible. As I helped her, she snapped at me. Then she felt bad and said, “I’m sorry. I shouldn’t have said that.” She clearly understood that was not typical for her. I think her reaction related to my not being gentle enough in my attempt to get her to shower.

While she went to the bathroom to brush her teeth, I went to the kitchen to get her morning meds. Shortly, I heard her call, “Daddy!” I called back from the kitchen, but she didn’t hear me. She called again. “Daddy!” I walked toward the bedroom and said, “Here I am.” This was a time when I thought it was best not to tell her that I am her husband. When I reached her, she looked a little frightened and said, “I didn’t know where you were.”

As we drove to lunch, I played some music that she likes. She didn’t talk much. When she did, it was to comment on the music. She enjoyed it. We had a pleasant lunch. It was as if the problems getting up had never happened. The afternoon also went well. We spent a couple of hours at home. She worked on her iPad a while and then rested on the sofa. After her rest, she wanted something to eat. It was ninety minutes before time to leave for opera night at Casa Bella. I took her to Panera for a bagel. We got home in time to change clothes and leave for dinner. That’s when another problem occurred.

I made a complete change of clothes and had picked out a different top for her. She didn’t want to change and snapped at me. I tried not to push her. She consented, but she wasn’t happy.

As usual, she enjoyed the evening of music. The man with whom we share a table commented several times about her enthusiasm. He and his wife got to observe an example of Kate’s memory problems when she looked at me and said, “And what is your name?” I said, “Richard.” She frowned. I knew that meant she wanted my full name and said, “Richard Creighton.” She frowned again. I said, “Richard Lee Creighton.” That was the right answer.

The biggest problem of the day occurred just before we left. I was seated across the table from her. The seat to my left was empty. I was seated with my back to the singers and moved to the empty seat and turned halfway to the right so that I could see them. When the program ended, I looked at Kate who was disconcerted. She looked at me and said, “Is that you?” It turned out that she had lost sight of me even though I was only four feet diagonally across from her. She was quite relieved to see me.

The man in the seat to my right got up, and I started to follow him out. He stopped to help his wife with her walker. The two of them were standing between Kate and me. I chatted briefly with a man at the next table. When I finished, I went around the couple to see Kate. That’s when I saw that the couple and another man who had been at our table were trying to comfort her. She had been very disturbed because she didn’t know where I was. When she saw me, she said sternly, “Don’t ever do that to me again.” I am sure the three people who were trying to soothe her were shocked that these words expressed so strongly came out of the mouth of someone they had no doubt viewed as very soft spoken.

It amazed me that she had become so anxious in such a short span of time. It couldn’t have been more than a couple of minutes. Of course, with no perception of time, it could have seemed much longer to Kate. I was standing within six feet of her the whole time, but she couldn’t see me. I apologized and told her I would never leave her. As we walked through the restaurant to leave, she continued to be a little upset. My apology must have been too light-hearted because she said, “This is no laughing matter.” By the time we got to the car, she was fine. I played several pieces of music she loved on the way home. That made her even happier. The crisis was over.

It is obvious that Kate’s insecurity is increasing and that I am her “security blanket.” I also think the events of the day illustrate how much her emotional reactions are tied directly to her perceptions of the events around her. Her rational abilities are not working well enough understand what is going on. That misunderstanding leads to insecurity that is sometimes expressed in behavior that is not typical of her.

More Insecurity and Memory Issues

Yesterday was a good day. I say that largely because Kate was in a cheerful mood. She was that way when she got up. As I have noted before, that doesn’t mean there was any improvement in her memory or confusion. When she appears to be so normal, I am still surprised when she says or does something that would be more characteristic of someone with dementia.

As she cheerfully got out of bed, she said matter of factly, “I don’t know my name.” We started to leave for lunch, and she asked my name and hers. She asked again as we walked from the car to the restaurant for lunch. She seemed perfectly alert and normal. There was no sign of frustration or anxiety. She just didn’t know our names and was matter of fact about acknowledging it.

At dinner, she said, “I want you to tell me what I would say that I want if you weren’t with me?” I told her there are two dishes that she likes and that she should ask for one of them. One is Tortelloni alla Stephania. The other is Tortelloni alla Panna. She tried to pronounce both names and did pretty well, but she wanted to get it right. She asked to see them on the menu. Then we practiced her saying both names several times. As we were doing this, our server walked to the table to take our order. She asked the server to help her say them. The server started to tell her the ingredients in each one. Kate was able to convey that she wanted to know how to pronounce the names. She practiced saying them several times. The server was new and didn’t know about Kate’s Alzheimer’s. I am sure she thought this was a bit strange. Ultimately, Kate was able to give the order herself.

My point is that Kate was unusually interested in knowing what she should do if I were not there to help her. I told her not to worry that I would always be with her, but she was obviously aware of how little she knows. It must have bothered her to think how she would order a meal if she were alone even though I could see no indication that she was disturbed. On the surface, her asking how to order her meal appeared to arise from an “intellectual” rather than an “emotional” basis. On a few occasions, she has also asked me how to get home after eating out. I have tried to tell her, but it is too complicated for her to understand or to remember.

The experience with the sitter yesterday also went well. The only sign that might suggest insecurity came as I left. She said, “You’re going to leave us?” I told her I would be back a little later. She was fine with that.

Last night she picked up a photo book of her father’s family. She spent at least an hour with it. She tried to go through it by herself. I gave her the chance to do that; however, she repeatedly had questions. I ended up standing by her chair as I watched the evening news. That way I could answer her questions as they came up and read sections of the text that she didn’t understand. She enjoyed looking at the pictures of her family. I look at her initiation of things like this as her way of trying to give herself a better sense of who she is. I am glad she has such a great collection of family photos. Working puzzles is entertaining, but the photos give her a better sense of herself and her place in her family.

A Slow Day Yesterday

Kate has gotten up early on four or five days over the past two weeks. On the days when I felt I needed to wake her, I haven’t had any trouble. That changed yesterday when I tried to get her up for lunch with the sitter. She wanted me to leave her. I could, of course, have let her continue sleeping, but I felt she had slept enough. In addition, she hasn’t been as accepting of Cindy’s getting her up. On two occasions when I have done that, she has remained in bed too long. Once she didn’t get up at all while Cindy was here. The other time she got up so late that she didn’t have lunch until 3:00.

By the time I got her up and dressed yesterday, Cindy had been here over twenty minutes. When I got home, Kate was on the sofa resting. I’m not sure how long she had been there. She continued resting while I put up a few groceries and checked email.

At dinner, she asked if I knew what she was going to do when we got home. I said, “Go to bed?” She said, “That’s right.” I told her I suspected she would get her second wind after dinner. That is what usually happens. As we drove home, she said, “What can I do when we get home?” I told her she might like to work on her puzzles. She liked the idea and did so for almost an hour as I watched the news.

Later when I told her I was going to take a shower. I suggested she come to the bedroom with me. She started to follow me but went to the bathroom for the guest room next to ours. I went to look for her when she didn’t return. I found her in the guest room under the covers with her clothes on and the light off. I suggested she come into our bedroom. She came with me.

I put on a DVD of Les Miserables. She sat down in her chair with her iPad. It wasn’t long before she put the iPad down. She started to put on her night gown. Then she got in bed and lay down. She had been very lethargic all day, but she didn’t go to sleep. She was still awake when I got in bed an hour later.

It was another day when she wasn’t cheerful. She just seemed tired, but it was also a day when she appeared to know me as her husband. As we drove home from dinner, she said something about my being a creature of habit. I said, “You think you know me pretty well.” She said, “I should.” I said, “Do you know my name?” She didn’t, but it didn’t bother her at all. She just wanted me to tell her, and we moved on.

I’m hoping for a more cheerful day today.

Confusion Over the Weekend

Saturday night, we watched the last half of a PROMS concert in London. It was an entire program of music by Rodgers and Hammerstein. We have watched it before, but this time Kate was more engaged. That was evident by the fact that she put her iPad down to watch. She enjoyed it and everything seemed quite normal.

When the program was over, Kate went to the bathroom to brush her teeth before coming to bed. When she came out, she saw me and looked puzzled. She said, “Where is he?” I said, “Who?” She said, “You know who.” I walked closer to her. She pointed in the direction of the family room and said, “Is he in there?” I said, “Who are you looking for?” She said, “Richard.” I said, “I’m Richard. I’m your husband.” She said, “No, you’re not.” I decided not to pursue it any further and gave her night gown to her. She didn’t ask any more questions.

Just before midnight, Kate woke up. She moved over right next to me. She apparently had had a dream and was frightened. I said, “It’s all right. I am right here with you. Nothing’s going to happen.” She said, “What about my mother?” I told her she was safe, that I wouldn’t let anything happen to her either. She gradually relaxed. That began a conversation that lasted over an hour.

She said, “I’m glad I have you.” I told her I felt the same way and that we had been together a long time. She wanted to know how long. I told her we had been married almost fifty-six years, and we had had a good marriage. She agreed. As we moved from  our marriage to other questions about family, she asked, “What is your name?” She was loaded with other questions. She asked about our children, their names, where they lived, what they did. She also asked what kind of work she did. I told her about her teaching school, becoming a school librarian, and working as a volunteer church librarian for nineteen years.

She said, “What’s my mother’s name?” I said, “Elizabeth Franklin. She was a special lady.” She picked up on “was” and said, “Is she gone?” Most of the time I answer honestly, but this time she really seemed worried. I said, “No, she is fine.” Then she said, “What’s my father’s name?” I said, “Carl Franklin. He’s a good man.”  She said, “What’s his name again?” I told her. Then she said, “What’s my mother’s name?” I told her. She asked where they lived. After I told her, she wanted to know where we live.

The last time I looked at the clock it was a couple of minutes after 1:00. Not long after that, we were both asleep.

Just before 8:00 yesterday morning, she started to get up. I got to the bedroom as she was getting out of bed. She looked at me and gave me a big smile. Then she said, “I’m so glad to see you.” The way she said it, I could tell she thought I was someone else. I gave her a hug, and she hugged back. I asked if I could help her. She looked puzzled. I said, “I thought maybe you wanted to go to the bathroom.” She said, “I’d like some clothes first.” I said, “I’ll tell you what. I’ll get some clothes while you go to the bathroom.” I started to walk her to the bathroom when she said, “I look forward to being with you guys.” I walked her to the bathroom and left to get her clothes. When I came back, she appeared to know me.

The rest of the day went well although there were other moments of confusion. For a while at lunch, she didn’t recognize me as her husband. I made reference to our children. She couldn’t believe we were married. I showed her a few pictures of Jesse and Kevin, and she changed her mind. I don’t know if she simply accepted that or if she really remembered. It was impossible to know for sure. I only know that she seemed more accepting.

After lunch, I watched the Master’s with the sound off. I played music that I knew Kate enjoys. She lay down to rest but never went to sleep. She enjoyed the music.

The biggest problem of the day occurred when we attended a drop-in at the home of a couple we have met at Casa Bella on jazz nights. They usually sit at our table, and I have enjoyed talking with them. Kate has not had the same connection. I accepted the invitation with the intention of putting in an appearance and then coming home. I hadn’t anticipated exactly how Kate would respond, but she has gotten along so well in other situations I decided to try. Big mistake. We were in a completely different part of town in a home in which we had never visited before. Along with that, there were a large number of people. It turned out that the primary connection was jazz. I saw several people I knew from other places in the community, but Kate didn’t know anyone. That included the people we really did know. The arrangement of the house was confusing to her. She didn’t know where she should go or what to do. A couple of times when I was engaged in a conversation, she walked away. She was quite uneasy and ready to leave almost from the time we arrived. There was nothing redeeming for her. I got something for us to eat, paid our respect to our hosts, and left. I have avoided social gatherings like this for quite some time. This experience confirmed what I suspected. It’s just too much for her.

We relaxed when we got home. She sat down with her “Big Sister” album. I asked if she would like me to look through it with her. I was hoping (and expecting) she would say yes. She didn’t. After a while, I noticed she was as excited about the album as she usually is. That’s when I discovered that she was confused about what to do with it. She had been treating it like her iPad with the puzzles app. She kept touching the photos, but nothing happened. Even after I explained the problem, she couldn’t catch on. I suggested she take a break and work with her iPad. She was glad to do that and worked on it for the remainder of the evening.

During the past couple of weeks, I have referred to how cheerful Kate has been. That hasn’t been true the past couple of days, especially yesterday. Like everything else, I can’t be sure exactly what accounts for the change; however, I always wonder if she isn’t feeling a bit discouraged about how she is doing. She is still sharp enough to recognize that she is not all right. Whatever the explanation, I know it is harder for me to be upbeat when she is not.

A Different Day Yesterday

Kate has been unusually cheerful the past two weeks. Yesterday was different. It’s not that she was in a bad mood. She just wasn’t especially cheerful. Getting her up earlier than usual may have had something to do with that. On the other hand, it may have been one of those things that we can never explain.

We had a busy day that started with my appointment for labs prior to seeing my doctor next week. Until the past year, I have always had the earliest appointment I could get. Since Kate sleeps later than she used to, I have changed to 11:00. That is still early for Kate, but I am eager to eat as soon as I am up. I woke Kate at 9:15 in order to give her time to get ready without rushing too much. It was one of those days when she didn’t want to get up. She told me to go on without her. I told her I didn’t want to leave her alone. I apologized for getting her up and explained the reason. She still didn’t get up. I asked her to do it for me. She agreed and did so well getting ready that we had time for a quick stop for a muffin at a Panera not too far from my doctor’s office.

From the doctor’s office we went directly to lunch with one of our associate pastors. We had a nice time, but Kate was not very talkative and cheerful. She actually snapped at me as I offered my hand to assist her in getting up as we were leaving. She had a hangnail on her left thumb and thought I was going to grab it. It was a nice lunch, but Kate wasn’t at her best.

We had a couple of hours before taking her for a massage. She rested at home most of that time but got up easily when I told her it was time to go. The past couple of times she has said she didn’t want to get a massage. This time she didn’t say a word. She went happily.

Two weeks ago when she had her last massage, I talked with one of the staff in the front office. I told them I thought we might be coming to the end of her massages. I told them I would like to try at least once more. We talked again this time. Kate had been so accepting that time, I thought it would be good to try again. I scheduled yesterday’s appointment. When I went back to pick her up, I waited a few minutes. Then the woman who gives her the massage came out and told me that they had finished, and she had left Kate to get dressed. When she went back, Kate was lying down on the table and had not dressed. I went back and helped her. She was confused. I don’t think she realized that she was supposed to get dressed. When she was ready, we walked back to the front desk where I discreetly cancelled the next appointment. I don’t plan to schedule any more.

The highlight of the day came when we returned home. Kate noticed the photo of her and her brother on the cover of her “Big Sister” album and said, “I just love that picture.” She commented on the smiles of the two children. I said, “Do you know who they are?” She did. I asked if she would like to look through the book. For the next hour we went through most, but not all, of it. She expressed more enthusiasm than she had all day.

I continue to find mystery in the way her brain works and doesn’t work. As we looked at pictures of her family, she sometimes recognized her mother, father, and brother. Other times, she had no idea who they were. Often she looked at two pictures of her father that were side by side on the same page. She asked, “Who is he?” I told her, and she asked, “What’s his name?” I told her. Then she looked at the other picture and asked the identical questions. We went through the book for an hour repeating these questions and answers. Of course, some of the confusion involves the fact that the way people look changes significantly over time, but the big problem is Alzheimer’s. I’m just glad she had that hour to really enjoy herself.

Last night we went to Casa Bella for jazz night. That is always a hit. She enjoyed it, but the experience wasn’t as good as usual. We always sit with the same couple. Often no one else joins us. If so, it’s just one other couple. Last night we were at a table with seven other people three of whom we hadn’t met before. This made conversation a bit more challenging. Kate was quieter than usual. She enjoyed the music, but I am sure she was uncomfortable in the larger group.

Looking back, it wasn’t a bad day at all. It just wasn’t like the ones we have had recently. Most days are very good. I’m sure we will have many more in the days ahead.

Update on Sleep and Mood

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

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

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

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

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