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Another Day of Confusion

Kate got off to a rough start today, and I feel that I may have played a part in creating the problem. This is a day when I felt I didn’t need to rush her to get ready. I turned on some relaxing music to wake her gently. After thirty minutes, I decided it was time to get her up. I did something I don’t usually do. I turned off the video cam and went to the bedroom. She was sleeping very soundly, so I decided to let her sleep a little longer.

About ten minutes later while I was in the kitchen, I heard her make a noise. I heard her again as I walked to her. (I would have heard her get up if I hadn’t turned off the video cam.) I could tell she wasn’t in the bedroom and said, “Where are you?” She said, “Right here.” She was in the hallway walking toward our bedroom. She had gotten up but didn’t know where she was and must have wandered to one of our other bedrooms. She was frightened and said, “Help me. Help me.” I went into “comfort mode” and told her I could help her with anything she needed. She told me she didn’t know what to do and repeated “Help me.”

I took her to the bathroom and then back to our bedroom where I had laid out her clothes a little earlier. She continued to be frightened and repeated her plea for help numerous times. There were moments when she seemed to calm down. One of those occurred when I showed her a photo of her mother in the hallway outside our bedroom,  another as we walked through the family room. When we reached the kitchen, I gave her her morning meds. She didn’t know what to do with them. I explained and coached her step by step.

She was very unsure of herself as we went to the car. As you would expect, I put on some music that I thought she would like. I think she did, but she was very quiet all the way to the restaurant. I remained silent thinking that the music would do a better job calming her than I could.

She was very confused at the restaurant, at least until she had eaten most of her meal. I worked hard to show her the salmon on her plate. She couldn’t distinguish the salmon from the sweet potato fries. I gave up and used her fork to pick up a piece and fed it to her. After a couple of forksful, she fed herself. She enjoyed her meal. She even ate about half of the mixed vegetables. She rarely eats any of them. She was calm until it came time to get up from the booth and walk to the car. She was very insecure, actually frightened, and held on to me tightly.

We returned home about 2:00, and Kate rested in her recliner. She was in and out of sleep. At one point, she opened her eyes and lifted her arms toward the ceiling. It appeared that she was looking at something or someone. She smiled. Then she closed her eyes again. Moments later she opened them and looked uneasy. I got up, walked to her and held her hand. I said, “You looked frightened? Are you?” She nodded. I asked if she could tell me what was frightening her. She didn’t know. I told her I was here with her and would help her with anything she needed. She didn’t say anything but squeezed my hand, and I took a seat in the chair beside her.

She woke up a little while later. I asked if she was relaxed. She said she didn’t know. I asked if she was frightened. She didn’t know. Then I asked if she would like for me to read to her. She wasn’t sure about that either. I told her I would like to read something to her and picked up The Velveteen Rabbit and started reading. As I read, she kept saying “Huh” as I read something new. The more I read, the less she did this, but she never completely stopped. And I never stopped reading, I wasn’t entirely sure that she was enjoying what I was reading, but she didn’t show any sign of going back to sleep. Several times she responded appropriately to parts that were sad.

When I finished, I said, “Isn’t that a nice story?” She nodded. Then I asked if she was glad that I had read it. She smiled and said she did. It was clear that her mood had turned around. She became more animated as she looked out at the back yard where the wind was blowing through the trees and shrubbery. She kept pointing to things that she wanted me to see. As we looked through the sky lights, I commented on how fast the clouds were moving, and we watched as they drifted by from West to East. We must have watched and talked about what we were seeing for fifteen minutes before she took note of the poinsettias in the room. She was quite cheerful.

Then I went picked up a photo of her and her brother when they were about four and two and showed to her. I was pleased when she said, “That’s my brother.” She commented on his smile and then looked at her picture and said, “That’ me.”

I had put on a Chris Botti album a little earlier. The last song on the album is “What a Wonderful World.” It caught her attention, and we talked about the song and how much we liked it. She was again at ease. Reading, admiring the trees and shrubs, photos, and the music turned out to be the highlight of our day.

She was fine until we got ready to leave for dinner. Once again, she seemed afraid. She was distracted by her meal. It was a big serving, and she ate almost everything and seemed fine as we left for home.

At home, she worked puzzles for a few minutes before wanting to get ready for bed. That took a little more time than usual. She required more help from me. After she was in bed, I turned on a series of YouTube videos of Andre Rieu. She is lying down in bed listening to the music and seems content. I think the chances are good that we’ll be back to “normal” tomorrow, but one never knows.

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A Mixture of Happy and Sad

I am always glad to report the Happy Moments that Kate and I have. This is only the fourth day of the new year, but we’ve had a lot of them so far. At the same time, we are experiencing sad ones as well. I can’t say that we’ve had anything as serious as this past Monday when she was confused, frightened, and experiencing delusions off and on most of the day. She has, however, experienced some of the same things periodically all week. That has been accompanied by being tired and generally lethargic.

She is still responding positively to photo books as well as the flowers and photos in our family room but with somewhat less enthusiasm than in the past. She has also seemed more dependent on me. She wants my guidance on many things. She wants to do what is right, but she doesn’t know what that is. Increasingly, she asks me where to put her napkin. At least once this week, she couldn’t understand what I meant when I said she could put it on her lap and asked me to do it for her. She more regularly needs my help with toileting, washing her hands, brushing her teeth, and showering.

On the other hand, each of us enjoys being with the other. I have actually enjoyed not having a sitter twice during the holidays because both Christmas and New Years fell on a Wednesday, a day for the sitter. Yesterday, she was very tired when we got home from lunch. I was afraid she might not be as receptive to the sitter, but that wasn’t a problem at all. She really seems to have developed a comfort level with both of the sitters, especially Mary who comes on Wednesdays and Fridays and has been with us over two years. She does ask about me (where I am and when I will return) while I am gone. She also displays varying degrees of enthusiasm when I come back. Yesterday, she was especially happy to see me.

All in all, it seems like she has not been doing as well over the past week or so. I have noted before that mornings are her most difficult time. I find that understandable since she hasn’t had any external stimulation for eight to twelve hours. She usually recovers a short time after she is up. Now she seems to be having similar experiences in the afternoon when she rests. The other night she wanted to watch the news with me. I think it overwhelmed her brain. The next thing I knew she was having a delusion.

The last few times we have looked at her photo books, she has told me she is tired and needed to rest not too far into the album. When she is resting her mind wanders, and she imagines people and situations that I am supposed to know about. She says things like, “What time will she be there?” Or “Who else will be coming?” “Who are we meeting?” I try not to ask who because she always believes I know. I give her an answer knowing that she won’t remember what I said.

Music, whether on YouTube, or our own audio system is often good for her. I think that is because she can enjoy it passively. It doesn’t require her to try to understand or remember. She simply enjoys it. She does, however, frequently ask me who is singing. That happens a lot with the YouTube videos.

I take all of these things as signs that 2020 will be a very different year for us.

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Changes Abound

This has been a week when I feel I’ve had more to say than I’ve said. I’ve been busier with Kate, and a few holiday related tasks. In addition, I have been dealing with a few household issues, a leak in our pool, a leak in a pipe under the house, a toilet that needed fixing, and some minor electrical work. Perhaps more than anything else, I haven’t been exactly sure how to express what I want to say. It’s all wrapped up in a single word: change.

Haven’t I said that before? Yes. Maybe that’s why it’s hard for me to say it again in a way that distinguishes what is going on now from the past. I’ve devoted a little more time this week to paying attention and thinking about that rather than writing. I haven’t considered this a waste of time at all. I’ve read about authors who have made a point of saying that the “thinking” part of writing for them is the most valuable part. With that in mind, let me tell you about some of the things that are going.

Kate  more frequently expresses insecurity about what to do when she wakes up, when brushing teeth and bathing, when we are in restaurants. She was especially uneasy during our Christmas dinner at Ruth’s Chris. That may have related to the somewhat more formal nature of the room, the service, and the fact that this is not a restaurant we often frequent. It had been several years since our previous visit. That was with the staff at the office and a time when her Alzheimer’s affected her much less than it does today. Whatever the cause, she was never fully at ease.

Her morning confusion seems to be more severe now. On several occasions, she was so frightened that she hasn’t wanted to get out of bed. Each time I have been able to help her recover, but it takes longer than the past. That happened day before yesterday. She didn’t know “anything.” I talked with her very slowly and calmly. She didn’t know who I was, but she trusted me. I was eager to get her up so that we could have lunch together before the sitter arrived, but I knew that rushing her would make things worse.

I put on some soothing music at a very low volume, and we talked for fifteen minutes or so. Though I talked about her parents and our children, nothing rang a bell. She became comfortable talking with me, but she was still confused. Then I decided it was time for something more upbeat. I remembered that several weeks ago she had recognized and liked the song “A Bushel and a Peck.” I played it. The minute she heard it she laughed. We were making progress. I was streaming the song from a playlist of Doris Day music, so we heard a couple of other old songs we both recognized. Then I switched to the soundtrack of My Fair Lady. By the time we got to the third track, I suggested we go to lunch. She didn’t jump right up, but she did let me ease her up, and we got ready. She was fine.

She struggles more with her clothes than in the past. Sometimes she wants to be independent, and I let her do what she can. It isn’t long, however, before she asks for my help.

Her vocabulary is diminishing. She often says, “I don’t know how to say this.” She can’t pull up the words that express what she wants to say. That is more than a vocabulary problem. It is also a problem organizing her thoughts.

Along with that she sometimes fails to recognize common objects. Ironically, that almost always happens with her iPad. When she sees it, she asks, “What’s this?” Last night I handed her toothbrush to her and didn’t know what it was or what it was for. I explained how she should use it. At Panera this morning, she looked at a napkin and asked what it was.

I have no way of measuring this, but it seems like she does not know my name or our relationship for a longer time each day. On the other hand, she almost always feels comfortable with me. She trusts me. It is when she first wakes in the morning that she is least likely to know my name or relationship. She does, however, know to call me in the morning. Most of the time, she just says, “Hey.” Interestingly, there are times during the day when she needs something and calls me by name. This seems to be a example of a simple “stimulus/response” behavior. She occasionally asks my name shortly after using it.

Our Christmas Day conversation when she couldn’t remember anything about her mother was a striking first. She has always retained strong and very positive feelings for her mother. I thought that would be the last memory to weaken. Of course, that didn’t last. I haven’t seen any similar signs since then.

There are more times like this when she seems to be in a fog. These seem to occur most frequently in the morning when she wakes or during the day after resting a while. It is like her brain closes down while resting or sleeping. Then when she opens her eyes and looks around, she doesn’t recognize anything or in some cases, she has hallucinations. After resting in her recliner a while the other day, she opened her eyes and pointed to something across the room and said, ““It’s been a long time, you know.” <pause>. Then she pointed to the ceiling and said, “Hey sit down.  All of you.” (Chuckles)

She talks in her sleep more. Sometimes I talk back to her, and she speaks to me while still appearing to be asleep.

Her vision is worse. I think that accounts for some of her uneasiness when walking from the car to a restaurant and back as well as her difficulty getting seated or going up and down curbs. She frequently fails to eat food on her plate because she hasn’t seen it. Occasionally, I walk to another room after we have been talking. When I walk in moments later, she doesn’t recognize me and asks, “Where did he go?” If I say, “Who,” she usually says, “The other guy. The one I was talking to.”

She loses me easily. Sometimes that occurs when we are within a few feet of one another. The other night at a nearby pizza place, I saw that there was just one remaining booth and walked ahead of her to claim it before someone else. When I looked around she was looking for me. We looked at each other, but she didn’t recognize me until I walked closer. She was frightened that she had lost me.

Surprisingly, she seems to be rather good at seeing small spots. It is not unusual for her to eat everything on her plate and then look for tiny specks of remaining food that she picks up with her finger.

Her sleeping pattern is more erratic. She had a long period of time when she slept regularly until 11:00 or after or when I woke her. More recently, she went through a period when she would wake up early and go to the bathroom then go back to bed. I’m not sure there is a pattern anymore.

She has more problems with eating. She is particularly confused when she has both a fork and a spoon. If she has soup, she usually begins to eat it with a fork. Then I show her the spoon. After she uses the spoon, she uses it for everything else.

She also uses soups and condiments as sauces for other parts of her meal. For example, we eat lunch at Bluefin on Saturday. They prepare excellent grilled salmon that she likes. It is not unusual for her to dip her salmon in the ketchup that accompanies her sweet potato fries. I brought some lobster bisque home from lunch on Christmas along with Our sweet potato casserole. She used the bisque as a dip for the casserole.

As she was finishing her meal last night, she poured all of the remaining ice and tea onto her plate with a few pieces of chicken and began to eat the dozen or so flat, square pieces of ice along with her chicken. She didn’t leave a speck of anything on her plate or the two cups with her side dishes of strawberries and applesauce.

She is beginning to forget how to take her pills. Sometimes when I hand her a pill and a glass of water, she asks what to do with it. She occasionally puts the pill in her mouth, drinks the water, and doesn’t swallow the pill. When I hand her the next one, she says, “What do I do with this one?” I have to watch her more carefully than in the past. She can take one pill and forget the others.

Yes, life is changing. There are more things that demand my attention. Having said that, we still have a good time together. I’ll say more about that in another post.

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A Christmas Afternoon Conversation

Kate and I had just returned from a late Christmas lunch around 4:30. We went to the family room, and Kate asked what she could do. I told her I could read something to her or she might like to look at one of her family photo books. She was unsure. I picked up a photo book of her father’s family and suggested we go through it together. I handed it to her and let her look for a few minutes while I brushed my teeth.

When I returned, she was looking at the first page. She told me she didn’t know anything. I told her I would help her. For about ten minutes we went through a few pages with my commentary on the people and places. She said she was interested but this was too much for her. She couldn’t absorb or remember anything. I suggested that it might be a good time for her to take a break and just rest. She said, “Let’s just do a couple of pages.” I agreed, but she stopped me again to say it was too much. This time she accepted my suggestion to rest. We closed the book and began an interesting and touching conversation that I was able to record. I have transcribed the beginning portion below.

Richard:         So you don’t remember anything right now.

Kate:               No. <pause> No. I don’t.

Richard:         Do you remember anything about your mother?

Kate:               No.

Richard:         What about your daddy?

Kate:               You know, right now, I just can’t even (Trails off)  This is so much to remember. It’s just too much right now.

Richard:         You know what you do remember though, I think? You can tell me if I’m wrong. You remember that you liked your mother very much. Do you remember that?

Kate:               No.

Richard:         You don’t?

Kate:               But that would be wonderful thing.

Richard          Do you remember what a nice and great woman she was?

Kate:               I don’t know much about her. I hardly know anything about her. I know I’ve been told, but I <slight pause> I mean, I must have, must have, but I have no (Trails off)

Richard:         No memory.

Kate:               This is why I don’t want to go too fast, and  I’d rather just go (Trails off)

Richard:         We don’t have to hurry at all. There is no reason to rush.

Kate:               Well, see, uh, that’s, that’s good.

Richard:         There are a couple of things I’d like you to know from me.

Kate:               All right. If I could tell you, I will.

Richard:         No, I just want to tell you something, and it’s the way I, it’s something I feel. One is that I love you very much.

Kate:               I love you too.

Richard:         Second is I want you to know you can depend on me.

Kate:               I think so too.

Richard:         I will help you with anything you need – anytime, and I believe that you know that I will.

Kate:               Oh, I know. Definitely.

Richard:         We’ve always cared for each other.

Kate:               Yes, we have.

Richard:         And we always will.

Kate:               That’s right too.

Richard:         You know, it takes us back to our wedding vows, doesn’t it? We said we would always stick together. For better or for worse.

Kate:               And we have.

Richard:         And, fortunately, its been mostly, almost entirely, the better for us. Hasn’t it? Haven’t we been fortunate?

Kate:               Oh, yes, yes, yes. I don’t remember much of it, but, you know, I’ve never had an anybody that . . . No <pause> no problems, they were all. I mean I don’t remember in (Trails off)

Richard:         You’re right. We just have had good times. We enjoyed the places we have lived. We enjoyed the people we’ve met. We’ve enjoyed our experiences in our work and going to school. You know, one of the things you enjoyed most was being a church librarian. It was one of the most fulfilling things (for you), and, you know, you did a good job. You helped so many. . . You’ve led a fulfilling life.

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A Difficult Morning

I have often said that I am able to lead Kate to a recovery whenever she has challenging moments. Most of those involve her confusion in the morning. More recently, she seems more frightened by sudden noises like those we hear at restaurants. She is also more irritable. I attribute that to her not understanding or anticipating my intentions when I help her. Yesterday morning all of these came together.

It began when her overnight underwear (pull-ups) failed. I was in the kitchen and heard her say something. She was upset. When I asked if I could help she said, “Get me out of here.” I got her to the bathroom. As I helped her get cleaned up and brush teeth, she alternated between wanting me to tell her what to do and resisting my help. As she usually does, she got tears in her eyes and apologized to me several times. While we were standing at the sink, I put my hand on her arm. She shrieked as though I were going to harm her. I asked why she was so upset. She cried and said, “I don’t know. I don’t know.” I believe that was a very honest answer. She really doesn’t know why, but she still feels she shouldn’t respond to me this way. I tried especially hard to respond in a gentle, caring way to comfort her.

Several times she said, “Why did you bring me here? I just want to go home.” I told her I would take her home. Then I got her dressed and took her to Panera for a muffin. Once we were in the car, she seemed fine. She even spent more time on her iPad than usual. In fact, we would have stayed longer except that it was almost time for the sitter who comes at noon on Monday. She didn’t mention going home again. The sitter came a few minutes after we got home, and Kate was just as natural with her as she is with me. I felt good as I left.

Looking back, I see the only difference yesterday morning from other challenging mornings was how upset Kate was. I don’t believe it lasted any longer than other mornings when she is confused. It does reinforce my belief that remaining calm with her and easing her into her daily routine brings about her recovery.

I hope this will continue, but I know I can’t be sure. I am reading a memoir written by a doctor who cared for his wife who had Alzheimer’s. I have identified with him in a variety of ways, especially his desire to care for his wife in such a loving way. Last night I read a section in which he relates the severe anger that his wife experienced in the late stage of the disease. Is that ahead for Kate? As they say, “only time will tell.’

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Our Visit with Ellen

Yesterday’s visit with Ellen was different than usual. As I think about it, the last few visits have been a bit different. I looked back and know that I made a similar comment in September. Both Ellen and Kate are changing. I have come to accept that I can’t predict Kate’s behavior as well as I used to. It is only natural that our visits will also be unpredictable.

Ellen lives in a facility dedicated to memory care and is divided into three “neighborhoods,” each with about twelve residents. They are free to move about from one neighborhood to another during the day but not outside the facility itself which is locked. We usually find her sitting in her wheelchair near the lounge with a television or in the dining area. Last time and again yesterday, she wasn’t in either place or her room. We asked one of the staff if they had seen her. She left to find her. In a few minutes, she returned with Ellen. Although she has been in memory care for two years, she has always recognized us. This time she was unusually excited to see us.

We pulled her up to a table and took our seats. We had only talked a few minutes when she tried to tell us something that we couldn’t understand. I finally understood that she wanted to go back where she had been. It seemed very urgent. We offered to take her, but she wanted us to wait and said, “Back in twenty minutes.” After she was gone, I looked over at the staff member who had brought her to us and explained that she wanted to do something in the other neighborhood. She offered to go get her, but we told her we knew our way around and would find her.

A few minutes later, we found Ellen in her wheelchair beside another staff member who was on the phone. Ellen seemed eager to talk with her. The three of us chatted while the staff member continued her conversation. We were able to gather that Ellen thinks the world of this person but never learned why she wanted to see her so much right then. When she got off the phone, she told us she needed to tend to something else. The three of us headed back to Ellen’s neighborhood.

On the way, Ellen appeared to be looking for someone. I think it may have been the staff member she wanted to see before. As we passed by the clinic, Ellen stopped and opened the door and looked in. Two or three staff members were there, and the one Ellen was looking for came out. She nicely explained that she had to take care of something and walked away. At the same time, I saw that someone else was delivering ice cream to each neighborhood for their afternoon treat.

We went back to Ellen’s neighborhood and sat together at a table where all three of enjoyed our treat. We talked a little while before Kate looked at Ellen and said, “We’re going to have to leave now. Then a visitor we had seen on one other occasion stopped by and introduced himself. There was a woman with him whom I assumed was the person he was visiting. That began a lively conversation, at least between Kate and the man and the woman and me.

When we finished, Kate looked at me and said, “I want to go home.” I knew it was time. We had been there an hour and twenty minutes. That was probably our shortest. We are usually there close to two hours. We recently went over that time when the music lady was there. We were all enjoying the group singing and dancing.

The drive home was not pleasant. It rained all the way, and the traffic was heavy. As sunset approached, it seemed unusually dark. The traffic was moving at seventy or more when a message popped up on the dash, “Passenger Seat Belt Unbuckled.” I looked over to see that Kate disconnected it and was letting it ease back into its stored position. I told her she needed to put it on. She didn’t know what to do. I explained that I couldn’t drive and help her. She asked me where it goes. I put my hand on the connector and touched her leg to show her. She still didn’t know what to do. I pulled onto the shoulder and got her fastened, and we were off again. We were back in town by 5:30 and stopped at Panera for quick bite. I was glad to be off the road and home.

I don’t intend to stop our visits to see Ellen, but the challenges are increasing. Except for the initial greeting, I’m not sure Ellen enjoyed it that much although she didn’t want us to leave. I’m going to keep an open mind about the future.

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Life is Still Good, But Changing

Yesterday morning, I replied to a Twitter friend who posted the following message.

Today is my fourth year anniversary since my diagnosis of Posterior Cortical Atrophy which is a variant of Alzheimer’s Disease. It affects my vision more than memory. In 4 years I’ve done really well, achieved a lot and still going strong. Power to me.

I congratulated her, and she sent the following reply.

Thank you, Richard. People think it’s strange for me to celebrate each anniversary, but it’s my way of coping and surviving.

I admire the way she is coping with her disease. It doesn’t mean she is free of all the frustrations that accompany dementia, but she is working to make the best of it. I have found that approach personally beneficial and have tried to capture the joy that Kate and I experience. There are times when I feel I may not fully convey the reality of the rough patches we also experience, and I want to make clear that we are now facing the most significant challenges that have occurred since her diagnosis. I have mentioned each of them at sometime in the past, but all of them are becoming more common.

NOTE: I completed this part of the post just before 11:00 yesterday morning when I went to the bedroom to waken Kate for lunch. My intention was to finish it with examples of some of the rough spots. Our experience yesterday led me to use it as an example. I wrote about that in the following section when we returned home from lunch about 2:30.

2019-12-18 (3:00 p.m. EST)

Another Recovery Following a Rough Start

It’s been about a year and a half since Kate first showed signs of anxiety or panic related to not knowing where she is, who she is, or what to do. Thus far I have been able to relieve her, but each time this happens I wonder how long I will be successful. From the beginning, simply trying to comfort her, rather than giving her information, has seemed to be the key factor in each recovery.

This morning (now yesterday) was no exception. About 10:45, I put on some gentle Christmas music to wake her. Fifteen minutes later, I went in to see if she might be ready to get up. She was awake, but it didn’t take long to discover she was confused and very uneasy. She wasn’t cheerful, and she didn’t greet me at all. I told her I would like to take her to lunch. She shook her head to say no. When I asked if I could help her, she gave me the same response.

I told her she looked frightened and asked if she were. She nodded affirmatively. I told her I would like to help her. I could tell that she didn’t recognize me and decided not to push her but just talk to her very gently. It wasn’t long before I said, “I don’t think you remember me.” She confirmed that. Then I gave her my name and told her I had I had known her a long time and could help her with any questions. I also asked if she felt she could trust me. She said yes. I said, “Other times when you have felt this way, you have felt better after you got up and dressed.” She wasn’t ready. I asked if she would like me to read something. She did, and I got Charlotte’s Web and read a couple of chapters. When I finished, I got up from my chair. Her eyes were open, and she looked at me. I spoke to her. She didn’t respond at all. She looked very strange, like she was asleep with her eyes open. Then her eyes closed, and she was asleep. This was the first time I had ever seen her like this. I let her sleep a little longer and then went back to wake her. When I returned, I asked if she thought she could get up for lunch. She asked about her clothes. I told her I had them ready for her.

She was still uneasy as she got out of bed. She didn’t want my help although she did want to hold my hand as we walked to the bathroom. She took a long time brushing her teeth. She got irritated with me when I tried to help her. I pulled back and let her take her time. She didn’t want help dressing and was irritated when I tried to help. I apologized for pushing her. I feel sure she didn’t recognize me and felt uneasy about dressing in front of me. Ultimately, she needed my help and accepted it; however, I didn’t take over. I let her do as much as she could.

When she was dressed and walked into the family room, her mood quickly changed. She stopped to look at the poinsettias and the back yard and commented on how beautiful things were. We walked to the kitchen where she took her morning meds. She was just fine and has remained that way since. We had a nice lunch, and she has rested a good bit since we returned home. I am hopeful that the evening will go well, but I know that we may not be so fortunate in days ahead. In the meantime, I am happy that we experienced a good recovery today.

NOTE: I finished the section above about 3:45. I started the following part last night at 9:20 and finished this morning.

At 4:30, I saw that Kate had opened her eyes. She seemed to have rested comfortably for almost two hours. I know she didn’t sleep that long because I saw her open her eyes and look around several times and spoke with her a couple of times. This time I asked her if she would like me to read something to her. She wasn’t enthusiastic and said, “What would you read?” I mentioned The Velveteen Rabbit, but she wasn’t interested. I mentioned Charlotte’s Web, and she accepted that. I read about twenty minutes. She didn’t respond at all. I went over to her chair and kneeled down beside her and asked if she would like me to take her to dinner. I encountered the same experience we had had that morning. Her eyes were open, but she didn’t respond at all. Again, it looked like she was sleeping with her eyes open. Shortly thereafter, her eyes closed. I waited a few minutes. Then I asked if she would like to go to dinner. She asked me to go without her. I continued to talk softly to her and told her that I didn’t want to eat without her. She agreed to go.

I was sure by the way she related to me that she didn’t know who I was. Before we left, she confirmed my suspicions when she asked who I was. On the way to dinner she asked my name. When I told her, she said, “Nice to meet you, Richard. Do you know my name?” After I told her, she tried to repeat it and failed. She asked me again. She tried again. We went through this several times, and she ended up saying her name about three times in a row and expressing confidence that she now might remember. We had a pleasant time, but she knew neither my name nor our relationship and was a little more formal or distant that usual.

On the way home, she asked where we were going. I told her we were going home. She wanted to know what that meant. When I told her we lived in the same house, she said, “But where will you be?” I told her we would be in the same bedroom. She was very uncomfortable with that. I promised her that I would not create a problem and that we had lived together a long time. She still seemed a bit puzzled.

When we got home, she didn’t recognize the house. Once inside, however, she must have felt a little more comfortable because she started to behave the way she always does. I am not sure that she knew me as her husband, but she was perfectly comfortable as I got her ready for bed. It could have been that she was totally dependent on me as to what she should do and simply had to trust me.

I stayed up another hour after she went to bed. When I got in bed, she was glad. She was perfectly comfortable with me. She was like she is any other night. Did she know me? I don’t know if she remembered my name or our relationship. We had just finished a full day during which she didn’t. That is a new record.

The good news is that the day ended on a happy note and that she was as comfortable with me as she has ever been. Despite challenges like these, we focus heavily on the good times we have, and I intend for us to continue doing so as long as we can. At the same time, I can’t deny the reality of Alzheimer’s. It takes its greatest toll on Kate, but that, in turn, has an impact on me. I remain optimistic about how I will adapt as the disease progresses, but the most difficult part remains watching her lose so much of her ability to survive on her own. It is especially hard in those moments when she suffers as she did off and on yesterday.

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A Different Response to My Name

Yesterday morning Kate was up unusually early. She showered and dressed with plenty of time to get to Panera by 9:15. As we got out of the car, she called me by name. Then she said, “I shouldn’t have done that.” I asked her why, and she said, “You are my elder.” I told her that would be all right and that we were good friends. She said, “I still shouldn’t have said it.” I told her it was all right for me. She paused a second and then said, “I still think I shouldn’t say it, but if it’s all right with you.”

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Early Morning Confusion

I woke up at 5:20. Kate was also awake. I asked if she were all right. She said, “I don’t know.” She was having one of her mild anxiety attacks. I say “mild,” because she wasn’t very emotional. She was concerned about where she was. She didn’t recognize anything and wanted to go home. We talked for about ten minutes. When she didn’t respond to my telling she was at home, I told her it was still early in the morning, and I would take her home later. She couldn’t remember that. I repeated it several times.

Then I thought I might divert her attention by taking her to the bathroom. She didn’t recognize me as her husband but was very willing to let me help her. When we got back to bed, it was 6:00. She didn’t want me to leave her. I got in bed with her. I decided to play a little soft music that I know she likes. The music did what I had hoped. She started to relax and held my hand. We didn’t talk at all. At some point, she went to sleep. An hour later, I got up and went back to the kitchen.

At 8:45, I saw that she was getting up and went to her. She still didn’t know where she was, but she was smiling when I entered the bedroom. She was ready to get up. I took her to the bathroom where she used the toilet and brushed her teeth. When she had finished, I told her it was time for her shower. She got in without complaining. I turned on the shower wand and handed it to her. Then I put soap in the other hand and guided her in using it and then rinsing off. It went well.

When she finished, I helped her dry herself and used the hair blower to dry her hair. She was quite relaxed. Then she wanted to get back in bed. That’s where she is now. Unless she wants to get up earlier, I’m going to let her stay there until time for us to get ready for lunch. It’s another morning when I don’t expect to walk. I think that is four or five times in the last seven.

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A Strange Experience Last Night

As I reported in a previous post, Kate and I had a great time yesterday morning. Reading and taking a tour around the house was fun for both of us. When the sitter arrived, Kate acted glad to see her. Although she did want me to go with them to lunch, she didn’t show any uneasiness at my leaving for Rotary.

When I arrived home, I expected to see her resting on the sofa. Instead she was seated on the sofa across from the sitter who told me that Kate had been very talkative while I was gone. I don’t know how long they talked, but I got the impression it was a long time. I didn’t ask what they talked about. Last night I got a taste of this myself.

I got Kate ready for bed before I took my shower. Just after I got out, Kate opened the door to the bathroom. I was surprised that she was up and asked if she needed to use the bathroom. She said she was looking for the girls. I had no idea what she was talking about. I do know that once in a while she believes we either have company in the house or that someone is coming to visit us. I told her we were the only people in the house.

Then she began a conversation that last more than forty-five minutes, fifteen in the bathroom and another thirty in the bedroom where she asked me to sit in a chair while she took a seat on the bed a couple of feet away. She stumbled over her words so much that I couldn’t everything she said. I was able to make some sense of what she was communicating but not what motivated her to do so.

She thought she was in Texas and a member of a group that apparently had been all women but now included men. She talked about being on a committee that was charged with identifying women who might become new members of this “group” (club?). I gathered that the group might be a “leadership” organization of some type because she talked a lot about the quality of the women who had recently joined and the prospects who were being considered.

As she talked, she asked me if I knew “Richard.” I told her I did. She said, “He’s a nice guy. You would like him.” She went on further to talk about him. She said, “You might say ‘He’s my . . . She paused as she looked for the right words. I was eager to see if she would say “husband.” She said, “guy.” Then she added, “He might even be the one I marry.” She continued talking about her club and mentioned “Richard” several other times but couldn’t recall the name and didn’t for the remainder of the conversation.

She only stopped her conversation because I mentioned that I was going to get ready for bed. I got her in bed and told her I would be in bed beside her. As I said this, I wondered how she would react to that since she obviously didn’t recognize me as Richard. Would she think it strange that we would now go to bed together? Not at all. We got into bed as we always do except that we didn’t snuggle. I was afraid that would seem too abrupt for her. We slept well without any further conversation except that we had had another good day. Now I wonder what she talked about with Sandy. Was it the same kind of conversation? If so, that must have seemed especially strange to her. It seemed that way to me.