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Sleep, Memory Issues, and Confusion

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

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

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

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

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

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

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

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

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

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Some things work out without much effort on my part.

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

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

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

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

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

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

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

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

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A Very Good Day: Mood Trumps Memory Loss and Confusion

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

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

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

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

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

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

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

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

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Increasing Dependence and Insecurity

I realize that my posts convey the fact that Kate is increasingly dependent on me, but a couple of things recently illustrate that more strongly than before. One of those occurred while we were in North Carolina. At the hotel yesterday morning she didn’t want me to leave her. I don’t mean leave the room. She didn’t want me to leave her bedside as she got up and as she dressed. I moved a couple of times, and she reacted quickly telling me not to leave. She wanted and needed my help with everything. One might think that is a typical reaction for her since she is normally groggy when she wakes up, but this was the first time I noticed a sense of insecurity if I left her to get ready by herself.

I saw the same kind of insecurity the night before when we were standing around the theater lobby after the show. I was talking with someone when someone else stood between Kate and me. In a few minutes, I saw that she was looking around for me with that same sense of insecurity. She asked the friends we had come with to the show where I was. I was standing beside the man who said, “He’s right here.” She had a look of relief on her face.

An incident yesterday afternoon was more surprising to me. I had a routine doctor’s appointment and took Kate with me as I have done for the past couple of years. This visit was a little different than previous ones in that I had a number of questions to ask the doctor. Given Kate’s dependence on me, I have been thinking much more about my own health. I recognize how important it is for me to stay healthy. For most of my adult life staying healthy and in good physical shape has been important to me, but now it is essential.

Thus, I was more attentive as the doctor went through my lab report. I asked more questions than usual. I was especially interested in my weight, cholesterol, and blood pressure. Since my last appointment, I have not exercised nearly as much as I had been. Not only that but we have eaten more desserts on a regular basis than we used to. I have also felt more stress. I talked to the doctor about my self-diagnosis of a pinched nerve in my hip. We discussed the likely source of the problem and stretching exercises that might help that. Of course, the problem is gone now, but it is the kind of thing that could happen again if I return to my regular exercise routine.

I am glad to report that all my lab results, though not as good as last visit, were in line with my past history. The only difference was my platelet count. It was fine but significantly lower than last time. That was obviously the result of my having donated platelets the afternoon before my labs the next morning. I had gained two pounds but was right in line with my personal goal. My blood pressure was also good.

As Kate and I left the doctor’s office, I could see that she looked worried. I asked if she were all right. She went on to explain that she had been thinking about what would happen to her if something happened to me. She couldn’t imagine what she would do. I told her I was going to make sure that I stay in good shape and that I would be able to take care of anything she needed. She seemed relieved, and we didn’t say anything more. I was struck, however, by how well she understood the potential problem for her should anything happen to me. It made me think of a conversation we had a few nights ago. She said, “Thank you for everything that you do for me. I couldn’t live without you.” I think the doctor’s visit heightened her sense of dependence and insecurity. I don’t think she understood much of what the doctor and I talked about, but she detected a tone of seriousness that shook her.

One other incident occurred just this morning. Kate started to get out of bed about 4:20. I asked if she needed to go to the bathroom. She did and asked where it is. I told her I would show her. She needed my help getting on her feet and seemed a bit unsteady. I held her hand and walked her to the toilet. She seemed so needy, like someone much older than she is. Of course, some of this goes along with her grogginess upon waking, but it seems like more than that to me. I continue to feel that her lack of exercise is creating a problem. Increasingly, she has difficulty getting out of a chair or into and out of the car. During the winter, I may need to think about museum outings that she won’t think of as exercise. We may also be reaching a time when I could get her to walk around the house. I don’t want to see her wheel-chair bound anytime soon, but even if we can avoid that her dependence will continue to increase as illustrated by the events above.

As I was about to add this post to the blog, I heard Kate say, “Hello.” I looked up and saw her standing in the doorway to the family  room. I walked over to her. She said, “Is anyone else here besides you and me?” I said, “No.” She said, “Good.” I’m not exactly sure what prompts this, but this is something she asks periodically. I suspect she may feel she has some obligation as a hostess if there is someone else with us. Then she asked me if she could go back to bed. I told her it was still early (8:20), and she could sleep a little longer. She got back in bed, and I pulled the covers over her. She said, “You’re the best husband.” I took note of the fact that she remembered that I am her husband. That reminds me of something else. I don’t recall her asking my name or anyone else’s  yesterday.

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Miscellaneous Happenings Yesterday

Yesterday Kate got up after 12:00. I wasn’t troubled by this since we were going to Flat Rock, North Carolina for a Christmas show that started at 8:00. That is the latest event we have attended in almost two years. I knew she would need as much rest as possible. She had no trouble getting up. She seemed to recognize me and was in a good humor but not ready to engage in conversation. After her shower, she thought I was trying to rush her as she was getting dressed. I was actually trying to avoid rushing her, but I moved too quickly explaining the order of the apparel I had put out for her. She snapped at me. Then she apologized. I said, “That sounds more like the gal I know.” She said, “I was taught to be polite.”

In the car on the way to lunch she worked harder than I ever recall to learn my name. She repeatedly ask me my name almost the entire time we were in the car. She never seemed frustrated, just intent on getting it right. She finally said, “That’s enough. I’m not going to remember it right now, but I will later.” We went through the same thing with her name without the same degree of repetition. Once inside the restaurant she said, “I think we are a perfect match.” I told her I agreed. She didn’t ask my name again.

On the way to Flat Rock, I had the radio on to the news. She was attentive to what was said but couldn’t understand it. She kept wanting me to explain what they were saying. A number of times she said, “You’ll have to explain this to me later.” She does this a lot when she is getting overwhelmed by information. In the early years after her diagnosis she used to say, “TMI.” Now she has forgotten that acronym.

Once we arrived in Flat Rock, we spent about an hour in our hotel room and then went to dinner with our friends. She handled herself well although it was hard for her to hear and/or understand the conversation. She had to ask us to repeat what we were saying several times. She gets confused about items on the table. For example, at two of the restaurants we frequent the butter is in black wrappers. She always thinks they are chocolates. I have to watch or she starts to eat them. She’s only been successful one time and didn’t waste time spitting it out. The other times I have caught her before she puts one in her mouth. I usually remember to unwrap a couple of them put any remaining ones near me to minimize the chance of her making a mistake.

We didn’t have that problem last night, but there was something else. Three of us had either soup or salad before the meal. At the same time, the server brought a basket of small rolls and placed them near the center of the table in front of Kate. Thinking they were hers, she put the basket at her place and ate all of them along with the butter.

Keeping up with things like coats, sweaters, and gloves can be a challenge. I try to watch for these things, but I am far from perfect. Last night she wore gloves to the restaurant. As we started to leave, she could only find one. A quick search produced the missing glove under the table.

When we walked into the lobby of the theater, our friends wanted to buy CDs while we went to our seats. When they met us, Kate greeted them cordially as though we had not been together just a few minutes before.

When we were ready to leave the show, she had lost another glove. We checked with the box office and found that it had been turned in. I should also mention that she has difficulty putting on her gloves. She gets them on the wrong hands so that they are upside down.

As we walked to the car, she asked me where we were going. I told her we were going to the hotel. She was very confused. She thought we were going home. I explained that we were staying at a hotel and would go home tomorrow. She said, “How was I to know?” This is a common experience and is my fault. I know that she can’t remember anything for longer than a few seconds, but she behaves so normally most of the time I tend to forget. In this case, we had spent an hour in our hotel room before dinner. I didn’t think about the fact that she would have forgotten that we were staying in a hotel. There are also times when I assume she won’t understand when she does. It is difficult to recognize those times when she will know something and those times she won’t. I suspect I am not the only caregiver who makes mistakes like this.

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Another Christmas Celebration

The Christmas season has always been special for Kate and me. This year is no exception. Kate, of course, can’t have the same perspective. She doesn’t recognize it as a season, but that doesn’t take away from her pleasure. She enjoys each individual experience even if she can’t recognize and remember that it is the Christmas season. I know that we may not be able to enjoy the season in the same way next year, so I am savoring every moment and trying to make each one special.

We attended our first Christmas event the last of November with a luncheon with the seniors at our church. Since returning from Texas, we have played a lot of Christmas music and watched quite a number of Christmas concerts on YouTube. In addition, a good bit of the music I play at home is music of the season. Last Thursday at opera night at Casa Bella, one part of the program featured Christmas music. We were back at Casa Bella on Monday night for their annual Christmas dinner that also included a program of music. We will attend jazz night tonight. I am sure we will hear more of the same music in a different style.

Everything we have experienced until last night has involved traditional music. We joined friends at the Flat Rock Playhouse in North Carolina for a Christmas program featuring Asleep at the Wheel. Quite honestly, I had never heard of the group until a couple of months ago when a couple we met at Broadway night told us about them. Knowing that Kate is from Texas, they thought it would be something they would enjoy. I was hesitant but accepted their invitation thinking that Kate might like it and that it would be a good social occasion for both of us. I am glad I did.

For those of you who, like me, haven’t known about this band before, I should let you know that they are an Austin, Texas, band that has been around since 1970. Ironically, they started in West Virginia. They have won 10 Grammy awards over that time and have had quite a number of big hits and albums. Like all the other groups of that age, they have only one of the original members with them, their lead singer. The other members are all on the young side. That adds a good bit of vitality and quality to their performance, but it is still a classic Texas-style band. Even when they play traditional Christmas music, it has a Texas flavor.

Given that description, you might expect that it is not my kind of music, and I would say that it isn’t the kind of music that I would play at home. On the other hand, Kate and I loved it. We found the group to be very likeable personally and the rhythm of the music engaging. I found myself tapping my feet throughout the performance. Every time I looked at Kate, she was smiling. It was a good night to let your hair down and enjoy the season.

This will go down as a unique Christmas event for us and an interesting complement to the other seasonal events we are enjoying. It was also another reminder of the power of music to stir one’s emotions. The night before we had watched a memorial service with Itzhak Perlman and the Pittsburgh Symphony. They were honoring the memory of those killed at the Tree of Life Synagogue. It was a moving performance. The emotions aroused by that concert were quite a contrast with those we experienced last night. No wonder music has such impact. It has the ability to stir so many different feelings. It has touched our lives in many ways, and I expect it to do so in the future.

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Patterns in Kate’s Behavior

I am always looking for patterns in Kate’s behavior. Sometimes that is difficult. For example, the time she gets up in the morning has been somewhat erratic since the spring. There is a general pattern, however. She clearly gets up later on average than she used to do. The fact that we rarely get to Panera in the morning is the best indicator of that.

I have tried to detect patterns in her confusion as well. That has been harder than her sleeping pattern. In general, I would say that she is more confused in the morning than later in the day. That makes sense to me because she has always been slow to get up. She has never been interested in conversation in the morning. It was like she needed time to pull herself together. Then she would be able to think more clearly. I admit that I really don’t know what was going on. I just know that she tended to be quiet. After a little time, she was “more like her normal self.” This makes me wonder what she thought of me all those years since I can be ready for conversation immediately after getting up.

Yesterday was a good example of how, given a little time, she can change. As I reported in my previous post, she was very confused when she awoke. It was as if her mind were blank. She was quiet through lunch. She didn’t even ask my name or her name or where we were on the way to or during lunch. That is unusual. We came back to the house where I put on some Christmas music, and we relaxed in the family room. By the time we left for our haircuts, she seemed alert and happy.

Yesterday was a day for her to have her hair colored. I waited while the woman who does our hair started the process with Kate. During the time that the color was setting, I got my haircut. I was seated in the chair next to Kate. At one point, the stylist (I always feel a bit awkward when I use this term. I still think it should be a barber who cuts a man’s hair. It must be a sign of my generation. <g>) stopped and went to Kate to “help” her. Let me explain.

Kate has developed what to me seems a strange habit. This happens most often when she is lying in bed before going to sleep and after her shower in the morning. She gets a few strands of hair at her scalp and runs her fingers along the strands until she gets to the end. Then she gets another few strands and does the same thing. This can go on for a long period of time. This is something I don’t understand. She has tried to explain that she is doing something good for her hair. She is pleased by what she is doing and has asked me to watch. Since this often happens after the lights are out and we are in bed, she says, “I will show you in the morning.” The only thing I can think of is that she might be getting tangles out of her hair. She does the same thing after she gets out of the shower. Her explanation for that is different. She says she is drying her hair. As you might imagine, this is not an efficient way to dry hair. Kate stopped using a hair dryer years ago. I have never used one, so we don’t have one in the house. On our trip to Texas for Thanksgiving I used the hair dryer in the hotel to dry her hair. She seemed to like that. I’ll put that on my shopping list.

That is a long introduction to tell you how the stylist was helping Kate. She had noticed that Kate was gathering strands of hair and doing the same thing she does at home. She was wearing light khaki pants and was getting the dye from her hair to her hands to her pants. There was no harm done. It’s just another illustration of the kinds of things that happen that I would not have anticipated.

After dinner, we came back to the house and watched two specials on TV. That is very unusual for us. The first was a Rick Steves’ special on “Christmas in Europe.” I was very surprised that Kate watched the entire program and without working on her iPad. I can’t remember the last time that happened except for a musical production. We followed that by watching a memorial concert celebrating the lives lost in the shooting at the Pittsburgh synagogue. It was a beautiful concert and a peaceful way for us to close our day. I should add that the time we are at home together after dinner is the most predictable time for us. I look forward to it each evening.

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A Confusing Start

Just when I am getting myself accustomed to Kate’s sleeping later, she got up very early this morning. I walked into the family room about 7:25. Kate was walking into the family room from our bedroom. She was carrying one of my dress shirts on a hanger. I knew immediately that she was looking for her clothes that I had not yet put out. When I got close to her, she said, “Who are you?” This began one of those conversations that I have reported on before. “Who am I?” “Who is my mother?” “Who is my father?”

This one was a little different from some of the others in a couple of ways. What I recognized after a few minutes was that she had no idea who she is, who I am, or where she is. This is the way she has been when she has had her anxiety attacks. What was different was that she didn’t display the same kind or degree of anxiety. She was quite calm. She was just very puzzled.

In addition, her memory was even shorter than usual. It was more difficult for her to repeat the names (hers, mine, her parents, our children, and her brother) I gave her when she asked. She was surprised when I told her I’m her husband. I asked her to sit with me on the love seat, and I picked up her “Big Sister” photo album that Ken had made for her. I opened it to several wedding pictures. She usually recognizes people after I have told her their names. That didn’t happen this morning. She was puzzled and couldn’t understand how she could not remember that we were married and that we have children.

After fifteen or twenty minutes, it was clear to me that she wasn’t able to process any of what I was telling her. I felt that I was giving her too much information even though she was asking for it. I asked if she would like to take a shower. She did. I took her to the bathroom and turned on the shower for her.

I came back to the bedroom just after she got out of the shower. I pointed out her clothes. She wasn’t ready to get dressed. She asked, “Who are you?” She was still surprised and said, “But you’re a nice guy.” It sounded to me that she hadn’t fully accepted that I am her husband, but I was all right anyway. In a few minutes, she asked if she could get in bed. I told her she could. I extended my hand to help her get out of the chair. She told me she could do it. Then she changed her mind quickly as she started to get up. She took my hand and walked to the other side of the bed. I helped her into bed and pulled the sheet over her. She again asked who I am. As she had done previously, she said, “You’re a nice guy.” It is 10:03 right now. I am sitting in a chair beside the bed. She is sound asleep. I wonder if she will still be confused when she wakes up.

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It began with a scream and ended with music.

About 4:30 yesterday morning, I was awakened with a loud scream. Kate had a bad dream. She was unable to tell me about it but was very frightened. This was a time to comfort her. I held her and told her she was all right, that she was safe and that I would take care of her. She calmed down and dosed off within fifteen minutes.

This was not the first time she has had a bad dream. Fortunately, they don’t happen often. Most of the dreams I have been aware of have been good ones. Until the past couple of years, she would talk while dreaming. They were always in a situation in which she was teaching children. I could easily see this as an outgrowth of her years as a school teacher and librarian/media specialist.

I stayed in bed until 5:10. I decided to let Kate sleep. She had responded so well to Valorie’s getting her up, showered and dressed last week that I felt comfortable letting her take care of her again. Before leaving, I told Kate I was going and that Valorie would take care of things. She seemed perfectly comfortable with that, and I left feeling good.

When I returned later in the afternoon, Valorie and Kate were in the family room having a serious conversation. They were talking about students and teaching. At least Kate was. Valorie appeared to be listening. I was pleased to see they were getting along well. They were talking as two friends might do. I am still surprised, but glad, that Kate is willing to let her help with her shower and getting dressed.

We ended the day with an annual Christmas dinner with music at Casa Bella. It was a wonderful evening. The meal was outstanding, and the conversation lively although it was hard for Kate to keep up. She couldn’t hear or understand much of what was being said. She frequently asked me to tell her what people had said. As I have been doing lately, I cut her meat (a very tender beef tenderloin) for her. That is something new within the past couple of weeks.

This was another bitter sweet occasion for me. I can’t predict the future, but I know that next Christmas will be very different from this one. I am glad that it went well. Kate and I both loved the music, and we ended the evening singing Christmas carols. We don’t know most of the sixty or guests who were there, but we are accustomed to seeing them for these musical nights throughout the year. It was a beautiful shared experience for everyone.

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A Short Day

Kate and I got to bed late night before last. As a result, yesterday was a very short day. It was almost 1:00 before she got out of bed. She didn’t want to shower, so we were able to leave for lunch close to 2:00. I was afraid we might be looking at 2:30 or 3:00. As it was, we didn’t get back home until 3:30. I wasn’t surprised that she was tired. She took a nap in the family room while I checked email and watched a little football.

We ate so late that I didn’t feel like eating much. We went to a nearby Mediterranean restaurant where I got a bowl of soup, and Kate had salmon over basmati rice. Her meal came with a salad that I ate. That leads me to make a comment about two changes in Kate’s eating habits since her diagnosis.

The first is that she was known for her salads and desserts. Her mother was an outstanding cook, and Kate took after her until Alzheimer’s entered the picture. When our children were little, she was especially careful to prepare nutritional meals and snacks. As children Jesse and Kevin enjoyed her homemade yogurt, granola, bread, and whole wheat pizza crusts. She even made yogurt popsicles with orange juice for their snacks.

After the children left for college, she and I started eating out more often. That was the beginning of a lessening of her interest in cooking. One of the things she kept up with was making very good salads. Since Alzheimer’s and her shift away from salads, I have missed those. She is now a “meat and potatoes” eater. I have learned to order her “Bacon Turkey Bravo” sandwich at Panera without bacon (too hard for her) and lettuce. I sometimes ask that they omit the tomatoes as well since she often doesn’t eat them. When we split meals at restaurants, servers often ask if we want them to split the salad or bring an extra salad. I always tell them to bring just one salad and give that one to me.

My explanation for this change is that she has been guided for years by what she thought was nutritionally appropriate. With Alzheimer’s she eats the things she likes without regard to any dietary or nutritional concerns. This is not unusual for people with dementia. For a long time broccoli was one vegetable she would eat, but that is just about gone now. It is not just taste that is relevant. She frowns at the mention of certain vegetable options at restaurants. I recently mentioned our having squash soup at two different restaurants. She didn’t like the idea. I got her to taste mine, and she liked it.

One of the big surprises has been a change in her taste for Dr. Pepper, her favorite beverage after iced tea. Now she frequently comments that there is something wrong with it. When she asks me to taste it, it seems fine to me. I have taken advantage of this by often ordering tea for her just to avoid the calories. I still keep Dr. Pepper (8 oz. cans) at home. She often fails to finish one. That is not unique to Dr. Pepper. When she was drinking apple juice, she rarely finished one glass.

Another change that has occurred involves her sense of hunger. I know from others that this is very common among people with dementia. It is not uncommon for her to ask, “When are we going to eat?” within an hour or so after a meal. Because she has so little memory, this is understandable; however, she often doesn’t feel too full after a very filling meal. This does not mean that she has lost her ability to feel full while eating. Sometimes she tells me she is full. Other times I can’t be sure whether she is full or didn’t like her meal. I make this point because we had a filling meal at lunch yesterday. She ate a lot of bread, her entrée (minus the spinach), and our eggnog cheesecake. We finished our meal about 3:00. At 5:00, I told her I didn’t feel hungry right then and would like to wait until 6:00 to leave for dinner. She was comfortable doing whatever I wanted but would have been happy to go at 5:00.

Having slept late yesterday morning, did not affect Kate’s bedtime last night. She got in bed around 9:30. She was ready to go to sleep. It was not one of her talkative nights. When I got in bed a little later, she was still awake. I moved over close to her. She said something that made me think this was one of those times, she didn’t recognize me as her husband. Then she pushed me away. She often feels hot after she gets in bed. Most nights I move close to her when I get in the bed. I don’t usually remain that close for long because I get hot, and she gets hotter. (I’m talking body heat now. <g>) This made me ask if she was hot. She said, “Yes. That’s part of it.” I said, “What’s the other part?” She said, “I’m trying to think of how to tell you. Let’s talk about it tomorrow.” That’s quite a note on which to call it a day. I know she won’t remember this when she gets up this morning. I’ll never know what it was she was trying to think of how to tell me. I do know this. Within a few minutes, she moved closer and affectionately put her arm around me.