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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.

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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.

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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.

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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.

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What makes a day “good”?

Yesterday, I saw a tweet by someone who produces podcasts on dementia. She mentioned that she had interviewed someone with dementia in one of her early programs, and she was still doing “pretty well” a year later. That made me think about the way Kate is doing and my reports of “good” days. It’s hard for someone to understand what that can mean. Was her memory better? Was there less confusion?

If we went from couple to couple, we would probably find differences in what they call a good day. I also think there is some change over time. If yesterday’s experiences had occurred in the early years after Kate’s diagnosis, I would have considered it a bad day. It was another day when she didn’t know who I was when she got up. That never occurred until the past six to eight months. I have come to accept that now. The same thing would have had a dramatic impact on me in the early years.

More than anything else, I consider it a good day when Kate is happy. Yesterday she was very happy. She joked with me a good bit. I regret that I can’t remember all the funny things she said. She was upbeat all day. Nothing seemed to bother her. She wanted to sleep longer when I woke her, but she got up without objecting. We had a little time between lunch and her massage. I showed her the three-ring binder of information about her and her family and about our lives together. She loved looking through it. She wanted to nap about twenty minutes before leaving for her massage. She got right up when I told her it was time to go. After the massage and a hair appointment, we had a short period of time before dinner. She said she was tired and wanted to rest. I asked how she would feel if we went to dinner right then. She said she that would be good, and we were off again. That meant that she didn’t get to rest as much as she would have liked. I thought that was good, especially when she went to bed about forty-five minutes earlier than usual. That should make it easier for her to get up this morning.

I should also say something about her massage since she didn’t have a good experience last time. I think she had forgotten what a massage was like and was surprised and confused by what the therapist was doing to her body. Before yesterday’s massage, I suggested that the therapist approach her as though this were the first one Kate had ever had. I don’t know that that made a difference, but Kate was fine when we left. I suspect that she was in such an upbeat mood that she was able to deal with massage more easily.

You might think by what I have said that she is typically depressed or in a bad mood. That is not so at all. On occasion, she has both experiences, but they are infrequent and short-lived. The difference yesterday was that she was so unflappable and upbeat. I find it uplifting for me when she is that way. So a good day doesn’t mean she doesn’t exhibit the symptoms of Alzheimer’s. Her memory and confusion are not any better, but she goes about her day as though everything is all right. I try to do the same. I think we’re both pretty successful. We focus on what she can do, not what she can’t and feel grateful.

Like other caregivers, my primary goals are (1) to keep her feeling safe and secure and (2) to keep her happy. Yesterday those goals were met. It was another good day.

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A Rocky Start with a Nice Finish

Yesterday morning I had two surprises. I was happy about the first one. Not so for the second. First, the good news. I saw on the video cam that Kate was up, and it was about 8:00. I always like it when she gets up without my having to wake her. That is especially true on a day that we have a sitter. That insures that I don’t have to rush her before the sitter arrives. It’s even better on Monday because the sitter comes at noon instead of 1:00.

When I got to the bedroom, she had just come out of the bathroom. She seemed alert and showed no signs of confusion. I asked if she was going to take a shower. She said she was. I knew that she would want to rest a while after her shower, but I also knew that we had plenty of time and still might be able to get to Panera for her muffin, something that is a rarity these days. As expected, she got her shower and went back to bed.

A few minutes after 10:00 I decided to get her up. That’s when I received the second surprise of the morning. She wasn’t asleep, but her eyes were closed. I asked if she would like me to take her to get a muffin. She gave me a strange look. She wasn’t the same alert Kate I had greeted earlier. She was clearly confused. When I said that I had her clothes out and would help her get dressed, she looked at me sternly and said, “Who are you?” I gave her my name and told her I was her husband. She was surprised. That is not unusual; however, she was obviously uncomfortable and pulled the covers up to her neck. I said, “You do recognize me, don’t you?” She didn’t and didn’t want me to help her dress. This was totally unlike any of our previous experiences. There wasn’t any way that I was going to explain this.

I didn’t push her. I told her I thought I could help her and got her “Big Sister” album. I showed her the photo of her and her brother on the cover. She didn’t show any sign of recognition until I pointed to her picture and said, “Who do you think this little girl is?” She hesitated and then said, “Me.” I turned to the first page and showed her a photo of her with her mother and daddy. Then I turned to a section that has a few of our wedding pictures. She didn’t remember anything.

I decided she just needed a little more time. I told her I wanted to take her to get a muffin. She asked about her clothes. I showed them to her and suggested she get dressed. By this time, she was beginning to feel more comfortable with me, but she still did not believe I was her husband. She did, however, let me help her dress.

When she was dressed, she noticed a wedding picture of our daughter, Jesse, on the dresser and said, “Who is she?” I explained that she was our daughter. She walked over to it and asked if she could take it with us. I told her she could. She asked where she could keep it. I told her this was our room and that she could keep it right there on the dresser if she liked. She still wanted to take it with her.

In the car on the way to Panera, I said, “You seem like you’re feeling less confused now.” She acknowledged that she was and said, “What’s your name?” I said, “Richard Lee Creighton.” Then she asked me her name. I said, “Katherine Franklin Creighton.” She frowned when she heard “Creighton.” I didn’t say anything.

When we got closer to Panera, she asked my name again. I told her and added that I was her husband. She wasn’t buying that. After we had been seated a while, she asked my name. I told her and said that I was her husband. She didn’t believe me. Again, I didn’t push.

We had been at Panera about forty minutes when I thought we needed to get home for the sitter. On the way I reached out my hand and touched her leg and said, “I love you.” She put her fingers to her lips and blew me a kiss and said, “I love you too.” I took that as a sign that she had finally recognized who I was.

The sitter arrived a few minutes after we were home, and Kate seemed perfectly normal. I said I was going to Rotary, and she said, “What are we going to do?” I told her that she and Cindy could go to lunch at either Applebee’s or Panera. She said, “Why don’t you go with us?” I explained that I needed to attend my meeting. She didn’t seem to mind that, but I was glad to see that she would have felt even better if I had stayed.

When I returned home, I was pleasantly surprised to see that Kate and Cindy were having a conversation in the family room. Kate seemed to be taking the lead. Cindy said they had gone to Applebee’s for lunch and come back to the house. She said Kate had not worked on her iPad at all and that they had been talking the whole time. That was another surprise and a welcome one. I was happy for two reasons. First, that she hadn’t had a nap. Second, because she was able to engage in conversation for such a long period of time and that she was doing a lot of the talking. I want Kate to develop a strong relationship with her. This was a dramatic contrast with her confusion this morning. I felt much better.

The rest of the day went very well. We spent about an hour and a half at Barnes & Noble and then went out for a Mexican meal at Chalupas. She spent the rest of the evening working on her iPad while I watched the news. Then I turned on a series of YouTube videos for her. Several times she needed help with her puzzles, but she seemed to get along well after that. When I told her it was bedtime, she was very cooperative. She slept through the night and is still sleeping as I finish this post at 7:30.

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An Unusual Morning

It’s hard to know what to expect each morning. I do know that Kate sleeps later now than she did a year ago, but sometimes she surprises me by getting up early. I also know that she has always been “slow” in the morning. Over the past few years, she has also been a bit groggy when she wakes up. Sometimes she shows no signs of grogginess. That was true yesterday.

Just before 9:00, I saw that she had rolled over in bed and thought she was about to get up. I walked into the bedroom. She was lying in bed with her eyes open running her fingers through her hair. She gave be a smile as I approached the bed where I sat down beside her. We chatted a few minutes. She was in a good mood and seemed very clear-headed but wanted to rest a little longer.

Close to 10:00, I noticed that she was up and looking at the clothes I had put out for her. I went to see if I could help her. She didn’t seem as alert as she was earlier. She was trying to gather her clothes together to take them into the bathroom before showering. I offered to help, but she didn’t want help. She asserted her independence, and I let her.

I went back to the kitchen where I could watch on the video cam. She went into the bathroom and didn’t come out for almost thirty minutes. I thought she must have showered. I went back to her. She hadn’t showered and wanted to go back to bed.

An hour later, I tried to get her up. She wanted to stay in bed. I told her I would come back in thirty minutes, and we could go to lunch. When I returned, she still didn’t want to get up. She told me to go to lunch without her. I said I would feel uncomfortable leaving her. In a soft and gentle voice I said, “I’m ready for lunch and would love to take you. Why don’t you get up and come with me?” She agreed but didn’t want to take a shower. I decided not to push it. I started to help her get dressed, but she wanted to do it herself. I stayed in the room. She asked for my help once or twice.

Once she was up she seemed fine. We didn’t talk much on the way to lunch. I played some music that she likes. The lunch went well. She brought up her mother and commented that she looks like her. I reminded her we have her father’s family movies from the mid-1930s to about 1945 and asked if she would like to look at them when we got home. She liked the idea.

On the way home, she said she wanted to rest. She did just that when we got back. After an hour or so, I asked if she was ready to see the movies. She was, and we spent almost two full hours watching them. She needed help identifying people throughout the entire time. That related both to the quality of the films and her Alzheimer’s. The films were originally shot in 16mm, many in color. They had deteriorated a good bit before they were transferred to VHS tape and more recently to DVD. Her problem was more than that, however. The movement from one person to another made it difficult for her to know what to focus on. When I directed her attention to her mother or the few in which her father appeared, she could never see them. I would stop, rewind, and then stop again when her mother came into view. I am happy to say that she loved every minute of it. I thought that she might get tired. That never happened. She was captivated seeing her grandmothers, aunts and uncles, and cousins as well as her parents. She was especially excited seeing her mother along with the other graduates coming out of the auditorium and shaking hands with the college president after the ceremony. It is also fun to see Kate from birth to about four or five. We have lots of stills, but the movies are really special.

After the movies, we went to dinner at a Thai restaurant. It was unusually busy. Kate was amazingly patient and never expressed the first complaint about the delay in our food. That surprised me because she usually thinks it takes a while for the food to arrive at any restaurant. In fact, she often asks, “Does this place have food?” only minutes after we have arrived or ordered.

It was after 8:00 when we got home, so we didn’t have a lot of time before going to bed. Kate worked on her iPad. She continues to have more problems working her puzzles. That started last night when she had to ask my help just to open (lift the cover) the iPad.

On balance, we had a nice day, but the entire past week she has shown further signs of decline that I would rather not see. Continue reading “An Unusual Morning”

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A Day of Ups and Downs

Kate’s confusion in the morning continued yesterday. The good news is that she wasn’t at all irritable. She just didn’t know who she is, who I am, or where she was. She was sleeping very soundly when I went to get her up. I really hated to wake her, but I knew we needed to get to lunch and back before her massage at 2:00. I wanted to allow plenty of time to avoid rushing her.

As I expected, she didn’t want to get up, but she did so very cooperatively. She was confused. She looked out the bedroom window as she does each morning and didn’t recognize where she was. Then she said, “Who are you?” I told her I was her husband. She was puzzled. I didn’t try to explain. I simply suggested that she take a shower and that we could look at some pictures I thought would help her. Again, she was cooperative.

She wanted to rest a while after her shower. That is not unusual at all. We had time, and I told her to go right ahead. After thirty minutes, I went back and helped her dress. When she was ready, I took her to the family room and showed her the “Big Sister” album. She immediately took to the cover photo of her and her brother. I asked if she knew who they were. She pointed to her picture and said, “Me.” She also recognized her brother. I find it amazing how a photo can begin to bring back memories. It is something that her intuitive abilities enable her to do. We opened the cover and looked at the first few pictures. She connected with them very quickly. Her sense of confusion was lifted.

I suggested we go to lunch and come back to spend more time with the album. She asked if she could take the album with us. I told her she could. When we got to the restaurant, she asked if she could take it inside. As I was about to suggest that she leave it in the car, she said, “Maybe I should leave it here.” I told her that sounded good to me.

It’s been over a month since Kate’s cataract surgery. It has definitely improved her vision – at least in some ways. I notice that she tries to read more than she did before. By “read” I mean to read a headline in a magazine or signs she sees wherever we go. Occasionally she makes an effort to read an article in a magazine, but the font is almost always too small for her. The major problem is not her eyes. It’s her Alzheimer’s. That was evident at lunch when I asked if she was going to eat her sandwich. She said, “Where is it?” This, too, is not unusual. She frequently fails to notice food that is on her plate. Once I pointed it out to her, she took a bite and put it down. A few minutes later when she hadn’t taken another bite, I asked if she wanted the rest of her sandwich. She asked me where it was. I believe part of the problem has nothing to do with her sight. I say that because she seems to locate most of the fries. I notice something similar when she has salmon and sweet potato fries at the Bluefish Grill.

It was noisier than usual at lunch. We were seated near a group of twelve on one side and eight on the other. Noise always bothers Kate. She was especially sensitive to that yesterday. She was in a generally good humor but annoyed by the chatter coming from both directions.

When we got home, we had about forty minutes before we needed to leave for her massage. She wanted to know what she could do. I suggested we sit on the sofa in the family room and go through the “Big Sister” album. She enjoyed that a lot but needed help identifying everyone. I think most of the problem is that people don’t look the same in photos taken at different times. Her Alzheimer’s also plays a part. For example, in a picture of four people standing side by side, I could help her identify the person on the extreme left. Then I would tell her the name of the person standing next to him. She has a tendency to skip that person and see the person to the right of him. That occurred several times even when I had my finger on the photo of the person. It’s not something I can understand. I just know it happens.

It wasn’t long before it was time for Kate’s massage. I left her there while I waited at Whole Foods which is a couple of doors down from the spa. When I went back to get her, she was sitting in a chair in the waiting room. She said, “Boy, am I glad to see you. Let’s get out of here.” It is always hard for her to explain how and why she feels a certain way, but I gathered that she was very confused about the whole process. She didn’t know what was going on when the therapist put her hands on her. I hadn’t thought about this before, and she has never acted this way before. She probably didn’t remember what it is like to have a massage. In addition, the therapist was someone she had not seen in quite a while. I am sure everything seemed strange to her even though I have been taking her twice a month for about three years. She has never expressed any enthusiasm about her massages, but I thought they must be enjoyable. Now, I am reconsidering. I think I’ll try one more time. If she isn’t happy with that, I’ll stop taking her.

The rest of the day went well. When we got home, we picked up her photo album again and looked at it until it was time for us to leave for jazz night at Casa Bella. We have heard the singer and the woman on the keyboard many times over the years. They are well-known locally and around the state. It was a very good evening. Kate had trouble hearing and understanding a lot of the conversation, but we were sitting with the same couple we’ve been with since the music nights began. They operated the restaurant for many years until they turned it over to their daughter and her husband. Shortly after we were seated, Kate said, “What’s the name of this place?” I told her and then said, “And this is the daughter of the woman who started the restaurant.” Kate had, of course, forgotten that as well. It was not an uncomfortable slip since the couple are aware of Kate’s Alzheimer’s and have been very supportive of her.

We got home a little later than usual, and Kate went to bed right away. It was a day of ups and downs, but it’s always good to end on a high note. We did.

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A Slow Start, But a Good Finish

Yesterday Kevin and Rachel celebrated their 25th anniversary. It was a special opportunity to be with them and the grandchildren. I only wish Kate could have understood and been able to enjoy it. She got off to a rocky start. It was one of those few days that she didn’t know who I was when went in to wake her. I told her we were going to have lunch with Kevin. Knowing she can’t remember who he is, I was careful to tell her that he is our son. I don’t believe that fully registered with her. As she sat on the side of the bed before standing up, she gave me a puzzled look and said, “Who are you?” I told her, but she still looked confused.

She asked me what she was supposed to “do now.” I told her it was time for a shower and walked her into bathroom. She showered and dressed more quickly than usual. I sent a text to Kevin letting him know she was up. His family was as well, and they came over for a short visit at the house before we all went to lunch.

Kate was not in a good mood when she woke up and wasn’t interested in being with company. That and the fact that she had had trouble the day before led me to take the lead in our conversation. TCU is very important to her. I drew attention to the number of us who had graduated from TCU or were current students. Of the remaining two grandchildren, our granddaughter will be a freshman in the fall. I also mentioned that it was a special day, Kevin and Rachel’s 25th anniversary. My efforts fell flat. Kate was not ready to engage in conversation. I believe it was a combination of her mood as well as some insecurity. We had lunch together at a nearby deli. Kate was mostly quiet. I felt she was uncomfortable. After lunch, Kate and I came back to the house while Kevin’s family did some sightseeing.

We were home about forty minutes before we left for Kate’s dental appointment. She frowned when I told her where we were going. I was surprised. She has always liked her dentist. She was quiet all the way. We waited a few minutes in the lobby before the hygienist came to take her to the back for her cleaning. Even though Kate has known her for years, she didn’t display any emotion of recognition or pleasure at seeing her.

In a little while, the hygienist returned to speak to me. She said Kate resisted the X-Ray procedure. When she got to the polishing part, Kate seemed frightened. The hygienist didn’t go any further. I explained that she had not been in a good mood since getting up. Ironically, I had been considering taking her back for a cleaning every month or two. That doesn’t seem like a good thing. Besides that, she said Kate seemed to be doing a good job brushing. I told her I was a little surprised but that she brushes her teeth a lot during the day as well as when she gets up at night. She left and brought Kate back to the reception area where I took care of the bill.

As we drove away from the dentist’s office, she said, “Are you hungry?” By this time it was less than three hours since we had eaten lunch, but it is not uncommon for her to think she is hungry even sooner than that after a meal. I understand from what I have learned from others that this is quite common for people with dementia (PWD). I told her I wasn’t hungry, but I thought it was a good time for a treat and mentioned going to Marble Slab. She liked the idea.

After tasting the first bite, she raved about how good it was. I agreed. She continued to express her pleasure until she had finished. She was a changed person. All signs of moodiness had vanished in an instant. She talked about having another serving, and I felt the same way but didn’t give in. I knew that we would soon be having a big dinner.

Coincidentally, I had read a relevant section of Dementia With Dignity by Judy Cornish earlier that morning. It is a companion piece to her Dementia Handbook in which she outlines the importance of focusing on the intuitive abilities of people with dementia (PWD). Her latest book gives more details on how to apply her theoretical framework presented in her earlier work.

The part I read emphasizes the importance of managing the moods of those with dementia. She notes that PWD regularly fail at tasks and conversation and are unable to “understand where they are, why they are there, and who they are with.”  She goes on to say that these experiences often lead to negative feelings. Her point is that caregivers can play a major role in redirecting their moods. I hadn’t been successful with that when we were with Kevin’s family earlier in the day, but taking her out for ice cream did the trick.

That was good preparation for dinner. We came back to the house where she wanted to rest. Not long after that, Kevin sent a text asking if we were home. He and the children came over for an hour or so. We played Mille Bornes while Kate continued to rest. They left around 5:00 to get ready for our 6:00 dinner.

The dinner went very well even though it was a challenge for Kate to keep up with the conversation. She had to ask us to repeat ourselves a number of times. After I offered a toast to Kevin and Rachel, she leaned over to me and whispered, “Whose anniversary is it?” Despite these things, I was encouraged she was trying to understand and didn’t appear to be withdrawn.

So the day ended on a high note. I am glad about that but also disappointed that Kate was unable to fully enjoy what was a very special visit with Kevin’s family.

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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.”