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.

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.

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”

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.

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.

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.”

The Ride to Memphis

After our early morning conversation yesterday in Nashville, I got up and dressed. Over the past year, I have requested a room that is near the breakfast area. That has worked well. I went to the lobby and brought my breakfast back to the room.

After being awake three different times the night before, I thought I would have to wake Kate to get her ready for the drive to Memphis. She surprised me as she often does. She got up around 9:15, and we made it to breakfast just before they closed at 10:00. She would have gone back to bed after her shower if I hadn’t told her they were getting ready to stop serving breakfast.

I was encouraged that we would be able to leave earlier than I had expected and sent a text to Jesse telling her that we would soon leave for Memphis. Then Kate wanted to rest again. She lay down on the sofa in our room and went to sleep. I woke her at 11:30, and we left the hotel just before noon.

Kate was in a very good mood and more talkative than usual. I have often mentioned that she gives higher evaluations to theatrical and musical performances than she would have done in the past. Recently, I also mentioned that she sees more beauty in things around her. She was very charitable in her assessment of the world around her yesterday. That lasted until she was sound a sleep last night. She liked the Residence Inn in which we stayed in Nashville. She loved the trees along the highway even though many of them were now without their leaves.

She was also very adaptable. We stopped at a Wendy’s for lunch. It was a cold day. When we got inside, she immediately commented on how cold it was. We discovered that the heat had gone our earlier that morning when it had been 27 degrees. I went to the car and got our jackets. She didn’t complain at all as we ate our meal in the cold. When I got up to get ketchup for her fries, I discovered that the two containers were empty. I mentioned it to an employee who (I thought) said he would take care of it. I thought he meant he was going to refill them and went back to our table. It was probably ten minutes before I went back for the ketchup. They were still empty. I asked again. This time the guy said they were out and asked if I wanted some. I told him I did. That is when he told me that they have it in packets. Earlier he had come back to the counter with them, but I had gone back to the table. He thought I didn’t want them. At any rate, Kate never complained about not having ketchup. She was simply happy to get it when it finally arrived.

I used to talk about Kate’s déjà vu experiences. The reason I haven’t mentioned them in a while is because she stopped having them (or talking about them). They were back yesterday. We had a detour that took us completely away from the highway and through a town we had never visited before. As we drove through it, she commented on different things she remembered. There were several other places along the road that she “remembered.”

About fifty miles out from Memphis, we passed homes along both sides of the highway. She commented on how nice they looked. She noted that they were small and unpretentious but kept up very nicely. She repeated this refrain for quite a while. I failed to see the same beauty, but I enjoyed the fact that she could see it.

Throughout the trip, she frequently asked, “Where are we?” and “Why are we here?” I explained that we were on the way to Memphis to celebrate Christmas with Jesse. Each time, she wanted to know who Jesse is. I told her that she is our daughter. Sometimes she was surprised that we have a daughter. Other times she remembered. When I mentioned her family, she asked Jesse’s husband’s name. When I told her, she almost always said, “He’s a nice guy.” That was not something new. She has been saying that for a long time.

We arrived in Memphis shortly after 4:00. We took a few minutes to unload the car. Then we were off to Jesse’s. It was a good travel day.

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.

From Clarity to Excitement to Insecurity to Enjoyment to Confusion

All of us experience moments when we are up and when we are down. Kate sometimes changes quickly from one emotion to another. She hasn’t always been like that. Alzheimer’s is the culprit. Yesterday she went through a series of emotions from the time she awoke until we had gone to bed.

When I went I to wake her, her eyes were open. She was very relaxed. She was enjoying the comfort of a warm bed on a cold morning. As I approached her, she smiled warmly. There was no sign of confusion about who I was. I told her good morning and that I love her. She smiled again and motioned with her hands that she felt the same way about me.

We didn’t have any obligations that required her to get up at that time, but I thought it would be good for her to get up for lunch and take care of a few things before Ken and Virginia arrived later in the afternoon. Often she is resistant to getting up, so I approached this cautiously. I found that for the second day in a row she was very cooperative. We were off to a good start.

Apart from her usual problem with names, Kate seemed quite normal and completely at ease. We had lunch and came back home and relaxed a while. Later we went to Barnes & Noble. Shortly after we arrived, I received a call from Sue Glenn, a childhood friend of Kate’s in Fort Worth. She was calling to check on Kate. It was just over a year ago that we had visited with her and several other high school friends when we were in Fort Worth. We hadn’t spoken with her since a phone call conversation a few weeks after that. I always wonder how Kate will handle phone calls from people she has not seen or talked with in a long time. I was very pleasantly surprised that the call could not have gone better. I told Kate who was calling and handed her the phone. Her eyes lit up immediately. There was a clear sign of recognition. She and Sue chatted almost ten minutes. Kate couldn’t say much with a lot of specifics, but she was able to convey her feelings about her past experiences. I think I derived as much pleasure listening to Kate’s side of the conversation as she enjoyed talking with Sue. I don’t often see such excitement or recognition these days.

We went back home to await a call from Virginia and Ken. After their call, I told Kate they would be coming to the house and then we would go to dinner. Coming off the phone call with Sue, I expected Kate to show a similar reaction. Instead, she felt a little uneasy. She said she was tired and didn’t feel like being with anyone. She didn’t say much more. I thought (and still think) she felt the need to be a gracious hostess and wouldn’t be able to carry it off. I assured her she always did well in social situations and would be just fine. She said, “You promise?” I said, “I promise.”

I am happy to say that I was right. She was herself, and we all had a good time. We chatted a short time before going to dinner. The dinner also went well. Ken and Virginia got a sense of why we like eating out so much. We encountered a couple of people we hadn’t seen in a good while. That added another nice touch to the evening.

Ken and Virginia went back to their hotel after dinner. When we came in the house, Kate was confused about where she should go. She wanted to go to the bathroom and asked where it is. I took her to the one she uses most. It wasn’t long before I heard a loud “Hey.” She didn’t hear me answer and asked, “Hey, where are you?” I said, “I’m in our bedroom.” She said, “Where is that?” By that time, I had walked to her. She was standing in a hallway around the corner from our bedroom. She didn’t know where to go. As I walked her to the bedroom, we passed the open door of the guest bathroom. She looked in and saw the bathroom door to the bedroom was also open. She said, “What’s that?” I told her. She said, “Oh.” Nothing seemed familiar to her.

Her confusion continued after we were in bed. She had forgotten that we are married. This was the second night in a row we have had this experience. Our conversation sounded like a couple that is dating. I said, “I love you.” She laughed and said, “We’ll see.” I said, “Well, don’t you love me?” She said, “Maybe. We’ll see.” I said, “Maybe we should make this a long-term relationship.” She said, “Let’s not talk about this right now.” It wasn’t long before she touched me. Then she touched her lips and blew me a kiss. Shortly after that she put her arm around me and we went to sleep.

Why does “roller coaster” come to mind?

This has been quite a day. Let me see if I capture it in words. First of all, there was no sleeping in today. I heard Kate push open the door from the back of the house to the family room. When I checked, she was standing in the doorway fully dressed. It was 9:15. I walked over to her and said, “Good morning.” She said, “Let’s go.” She was impatient, ready for her muffin at Panera. I told her I needed a few minutes to get ready and that I would get her medicine for her. She said, “What medicine?” Apparently, she had forgotten she takes pills each morning. This was the first time she has responded this way about her meds.

She went to the kitchen. I went to our bathroom for her medicine. I heard her say loudly, “Hey.” Before I could answer, she said it again. I got the pills and headed toward the kitchen. Again, I heard her say, “Hey, are you coming?” It is not uncommon at all for her to rush me when she is ready. This morning she was more vociferous than usual.

I put her meds on the island where I put them every morning along with a glass of water. After taking half of them, she turned around to the sink and poured out the water. I noticed the others she had left and called her attention to them. This, too, is becoming a frequent pattern, so I am watching more closely to see that she takes them. When I pointed them out, she said, “Why didn’t you put them over here where I could see them – on the counter by the sink where she was standing.” (At one of Kate’s recent doctor’s appointments, the doctor mentioned the possibility of reducing the number she takes. He was talking about her Aricept (donepezil) and Namenda (memantine). I told him I didn’t know that they worked at all, but Kate was doing well. I wasn’t ready to drop them, primarily because there is some evidence that a decline sometimes follows that. I am still not ready to drop these two prescriptions; however, I believe we might be able to give up the vitamin D and calcium. That will be something to discuss at Kate’s next appointment.)

Once we were in the car, she continued her “gruffness” only this time she was trying to be funny. It wasn’t working. It was almost like a Don Rickles bit, and I was the victim. She said some of the things she has said before. She said that I wasn’t handsome and talked about my nose. She surprised me by asking me if she had a nose like mine. I told her she didn’t. She was relieved.

As we got out of the car, one of our Panera friends drove into the space beside us. I said something about his wife’s not being with him. Kate said something like, “I guess she didn’t want to be seen by you.” That is totally out of character for her. I’ve never heard her say something like that to anyone else but me. She was kidding, but it didn’t sound like it.

Once we were inside and about to sit down, Kate stopped and said something to a man seated at the next table. I didn’t heard what she said, but she was telling him something about me. She started to turn away. Then she stopped and said something else to the man. I set up her iPad for her and went to get her a drink. When I brought her drink to her, she said thank you. Then she spoke to the man she had spoken to earlier and said, “He’s really a nice guy.”

Her behavior was not just notable because she was teasing but not doing a good job of it. It was more like she were playing a role and not herself. Normally, she wouldn’t be talking so much, nor would she say the things she said. She continued in the car on the way to lunch. Once again, she was “teasing” me. Something came up about our relationship, and I told her we were married. She expressed surprise. That was nothing new. Then she said, “Is that for real?” I told her it was. She said, “I don’t know what I was thinking. In a few minutes, she said, “You know I’m kidding, don’t you?. You’re a nice guy. What’s your name?” Her tone was very different than before. She was more like herself.

As we settled in at our table in the restaurant, we had a rather typical conversation except that she was more talkative than usual. Several times she asked me questions about her mother and father, my name, her name and where we live. Our server commented that she hadn’t had to refill my coffee as much as she usually does. I also didn’t finish my salad before the entrée arrived. I told her I hadn’t had time because we were talking so much.

After lunch, we drove back to the house. On the way, Kate said she loved me. I told her I loved her as well. Then she said, “What’s your name?” She was very tired and asked if it would be all right if she took a nap when we got home. I told her that would be fine. She didn’t waste much time before she was in the bed where she remained for an hour and a half before I asked if she would like to get out of the house. She was ready, so now we are at Barnes & Noble. We’ll be here another thirty or forty minutes before going to dinner. I’m glad to say it seems like she is back to normal.