A Shift from Confusion to Enjoyment

It is 2:00 Sunday afternoon as I begin this post. Kate and I returned from lunch an hour ago. As is her custom, she took her place on the sofa in our family room and has been resting ever since while I busied myself with several tasks on my laptop in a chair across from her.

She was asleep for almost an hour before waking and looking through a photo book our son Kevin had made of a trip we made to New York City in 2015. We had taken him and his youngest son along with our daughter Jesse and her twin sons. It was the last big trip we took. Kate doesn’t often browse through the book, and I was surprised to see her so engaged with it. She talked to herself all the way through it. I wasn’t clear whether she was awake or asleep, but she enjoyed herself. I didn’t pick up everything she said. It didn’t appear that she recognized it as a book with photos of people she knows (knew?). Her comments were just about what she saw. When she finished, she closed her eyes a few minutes then opened them and said, “I like this place. I really really like it. Ahhh.” I caught her eye and said, “You look happy.” She said, “I am. Are you?” I said, “I’m very happy,” and I was.

The day didn’t begin this way. When I first heard her this morning, it was 9:45. She looked like she was contemplating whether or not she should get up. I said, “Good morning. It’s good to see you.” She didn’t give me the smile I was hoping for. Instead, it was a look that suggested she had no idea who I was and wasn’t sure she wanted to know.

It didn’t take long to discover that she seemed wide awake but unsure of what she should do. I told her it looked like she was about to get up and said I would be glad to help her. She wasn’t sure. I told her I could get her clothes for the day and make breakfast for her. She hesitated. Then she asked me if I would take her home. I told her I would. That was all she needed.

I got her up and to the bathroom without any difficulty. She was perfectly comfortable with me throughout the bathroom routine and getting dressed although she never gave any sign of affection or strong feeling about me.

The first sign of happiness came when we walked into the family room. She first stopped to look at the African violets. Then she saw the poinsettias that are still healthy, if not completely red, after six months. Next she took interest in her ceramic cat and then a photo of our son when he was about 8 or 10. She was beginning to cheer up.

By the time we got to the kitchen for breakfast it was almost 10:30. I decided to take advantage of her being up early and get an early lunch at Andriana’s; therefore, I only gave her juice and a small bowl of blueberries and raspberries. We have three anniversary cards on our kitchen table. At almost every meal she likes to look at them and have me read them to her. It is interesting that even when she doesn’t realize that I am her husband, reading the cards does not strike her as a surprise. That was the way it went this morning.

While she was eating, she seemed to become increasingly at ease. She hasn’t mentioned my taking her home again. That continued on the drive to the restaurant. We enjoyed our time together at lunch. At one point, our server introduced us to her 11-year-old daughter who happened to be there. As they walked away from the table, Kate said, “Mr. and Mrs.? Does that mean . . .” She didn’t finish the question. I said, “Yes, we are husband and wife.” She was quite surprised. I was even more surprised that she remembered the server’s referring to us as “Mr. and Mrs.”  I told her we had just celebrated our 57th anniversary a week ago. Then I said, “I hope that doesn’t bother you.” She said it didn’t, and it looked as though she were telling the truth. This led to a wonderful conversation about the good times we have had.

This kind of transition often occurs in the morning. It begins with her having a blank slate with respect to her recollections of anything. That leads to a feeling of concern that is sometimes very mild. Other times it is more intense. In every case, she ultimately comes out of it as she is exposed to more experience with her surroundings. She begins to feel at home.

As I close this post, she is once again looking at the NYC photo book. She just said to herself, “Isn’t this wonderful? <pause> Let’s see who all is in here. <pause> Okie Dokie. <pause> You’ll love it. <pause> Let’s see. Just a minute. Let me see. Hey.” She is obviously happy, and I am happy to see her enjoy it by herself. That is a rare event.

Alzheimer’s Took Kate On a Wild Ride Yesterday.

It’s been a couple of years since Kate started to forget my name, but I have taken satisfaction that, with rare exceptions, she always recognizes me as someone familiar that she likes and trusts. Yesterday morning didn’t appear to begin that way, but it was soon clear she didn’t know who I was and was very suspicious of me. Perhaps, “suspicious” is the wrong word. She didn’t say much, but the look on her face was a little more like anger. Unlike other occasions, I had a difficult time putting her at ease.

Once again, she awoke earlier than usual. When I walked into the bedroom, she was wide awake and greeted me enthusiastically. Her greeting, however, was a little more like I was a good friend she hadn’t seen in a long time. We chatted a few minutes. Then I brought her bear to her. We talked a little more before I asked if she wanted to get up. She said she wanted to rest a little while longer. I told her it was early, and that would be fine. I asked if she would like me to bring my laptop to the bedroom and sit in my chair beside the bed. She did.

An hour later, she woke up. This time she didn’t express any enthusiasm. She didn’t know anything and was scared. I told her I knew a lot about her and her family and would be glad to answer any questions she might have. She didn’t know what to ask or what to do. I suggested that she get up, and I would fix her breakfast. She liked the idea of getting breakfast but not getting up. I spoke to her very calmly and encouraged her to get up, but that didn’t work. Finally, I said, “You’ve felt this way before, and you seemed to feel better once you were up and dressed.” She was skeptical but agreed to try it. She got out of bed, and we walked to the bathroom. I thought she was all right.

She didn’t say much in the bathroom except to ask my name several times and was not as warm and friendly as she can be. Getting dressed was a simple matter. She enjoyed her breakfast but was rather quiet. We had another hour and a half before lunch, so I suggested we read The Velveteen Rabbit. She wasn’t eager but consented. Before I started, she wanted to rest. I thought about her bear and wondered if that might lift her spirits. She acted like she had never seen it and didn’t care about it.

I let her rest until it was time for me to order lunch. I had no trouble getting her up, but her mood had not changed. On the way to pick up lunch, I turned on some music that she likes. When she heard “Shall We Dance” from The King and I, I noticed the first flicker of a change. On the way home, I played more.

When we returned home, I played the same album and didn’t talk much. Neither did she. She enjoyed the music. During one of the songs, she reached her hand out to me. I took it. She put her other hand over mine, and we sang together. She was back to normal.

It wasn’t long before the sitter arrived. As I have been doing during this period of sheltering, I took a walk. It took me a few minutes to get ready. During that time, I noticed that Kate was talking with Mary. It was at least ten minutes before I left, and they were still talking. I make a point of this because their conversations are usually brief and periodic. Kate rests most of the time the sitter is here. I was encouraged by Kate’s mood and that the two of them were engaged in such natural conversation.

I was only gone about forty-five minutes and was pleased to see that Kate was not resting. She had one of her family photo books in her hand. Mary was seated in a chair across from her. I didn’t go in the room to let Kate know I was home. I am sure Mary heard me come in. I checked email and then had two lengthy conversations with friends.

After the second call, I heard Kate talking enthusiastically about the things she was looking at. Several times she asked when I was coming back because she wanted to ask me some questions. I decided say hello. She was excited to see me, but she was mostly excited about the photo book with its pictures and the accompanying information.

She was particularly interested in my remembering everything so that she could use it in her own album. It always intrigues me that even when I tell her this is her book, and she has all the information, she never understands that it is hers and is available to her anytime. I suspect this occurs because she believes she is in the home of a relative and not her own home.

At any rate, she was unusually animated. She and Mary talked the entire time she was here. I walked Mary to the door when she left, and she told me that she had taken Kate to the bathroom while I was gone and changed her. That was the first time that has happened in the two and a half years Mary has been with us. This was a good indication of how good she felt about Mary. Kate even commented to me about how much she liked her.

Not long after Mary left, we went to pick up our takeout dinner. I had given Kate her bear (Charlotte), and she wanted to take it along with her in the car. On the way home, she mentioned sharing her meal with Charlotte. I wasn’t sure how far she was going with this. I thought Charlotte could get pretty messy. As it turned out, she did get a little food on her but not much. I propped her up on the table beside Kate and got a small plate for her food. Kate put a little food on the plate and also tried to put some in her mouth. She loved attending to Charlotte.

Kate’s mood changed after getting dressed for bed. She didn’t know where we were and was worried about people who were either in the house or who might be coming over. She seemed frightened. I assured her we were the only ones in the house and that no one was coming. She wasn’t convinced and repeatedly asked me where we were and why. This went on for at least thirty minutes before she seemed to relax.

When I joined her later, she greeted me warmly as though she had been that way all day. I was glad to end the day on a high note.

Alzheimer’s Continually Presents Surprises

As I’ve said many times, change is a big part of our lives now. Sometimes the changes seem to come out of nowhere and, thus, are more surprising than others. Yesterday afternoon, Kate experienced two changes in her mood and behavior that caught me off guard. The first one demanded a lot of my attention. I welcomed the second.

Our day had been a very good one. She was up at 7:30. She was confused, but it was a time when she was ready to do whatever I suggested. I told her I thought it might be good to get up and have breakfast. I had already finished mine but enjoyed having my coffee while she ate.

After breakfast we adjourned to the family room where I thought she would immediately decide to rest, but she didn’t. Instead, she was interested in looking at a photo book. It wasn’t long before she was tired and rested until time for an early lunch.

She rested again as soon as we finished lunch. She didn’t sleep much, and the last hour she tried to read a booklet that her mother’s Sunday school class had given her for her birthday in 1989. It was filled with things the class had heard her say many times during the years she had taught. I asked several times if I could read some of it to her. She finally accepted, and we both enjoyed ourselves.

Then it was time for dinner. I placed an order at a nearby Mediterranean restaurant. On the way, Kate asked for her lipstick. I was surprised. It had been months since she asked about lipstick, and I stopped carrying it. (I suspected that she must have thought we were going to see someone, but she didn’t say anything that would confirm this until much later.) As it turned out, this was the beginning of the first significant change in her mood and behavior. I explained that we could get it when we got home. I never thought she would remember it. This was another time I was wrong. As we were eating, she asked for it.

I went to the bedroom and brought it back to her. I started to open it myself, but she wanted to do it. She extended the lipstick too far, and it broke off. She grabbed it with her hands and put it on her lips. In the process she made quite a mess on her hands and her cloth napkin. I got something to wipe her hands, but it wasn’t easy to remove all of it.

As we continued eating, she asked about the location of her salmon and her cucumber salad on her plate. I hadn’t thought much about it, but she had pushed them around after I served her. I told her it was fine. I added that she could put them wherever she wanted.

It got more serious later. She had finished eating and was now applying her aesthetic tastes to the arrangement of her leftover food. That would have been fine, but she wanted my help. I said something that was a playful response to her request. That was the wrong thing to do. This was a serious matter for her. She had pushed all the remaining food together toward the center of the plate. She was concerned about a couple of blank spaces where there was no food. I picked up a couple of pieces of cucumber and filled in one of the gaps, but she wasn’t satisfied. She started moving grains of rice and pieces of tomato to balance the “food art” she was creating. She picked up several things and put them on her placemat. During this process that took about twenty minutes, she mentioned that “she would like it better over here (referring to portions of the food). She wanted to know what I thought. I said, “It looks good to me.”

Then she extended her art beyond the bounds of her plate. She crumpled a piece of a paper towel and put it on the placemat and pushed it toward the center of the table. She also picked up the two coasters and made them part of the art. Subsequently, she added two catalogs, a coloring book, and crayons. At some point, she said something about wanting it to look right for “them.” In this case, she was talking about people who were coming to the house. Finally, she stopped, but she wanted me to put the plate with the food in safe place. I put it in the refrigerator.

Then we went to the bedroom where I helped her get ready for bed. She has been getting in bed around 7:15 or 7:30 recently. This time she got into her night clothes but wasn’t ready for bed. She wanted to know what she should do. I asked if she would like to look at one of her photo books. She did, and I brought her the “Big Sister” album. I knew she would have problems with it, but I figured she would probably give up and go to bed. Wrong again. This came at a time when I wanted to clean up a few things in the family room and kitchen before taking my shower. She was insistent on my helping her. She seemed to be under pressure for something.

She asked what she should do. I explained that she should go through the book looking at the pictures. I told her she would see a lot of pictures of herself, her brother, and her mother and father. This didn’t help her. I pointed to a picture and told her some of the things I noticed about it and told her that was the kind of thing she could do. I was surprised when she seemed to get the idea. She started her own narrative with a photo. Then she said, “It’s your turn.”

I told her there were a few things I needed to take care of and would also be taking a shower. I said I would come back to her. That’s when she said something about our preparing for someone to arrive and that we were going to put on a show for them with the photo book. She would tell her story with one photo. Then I would tell my story with another and so forth. I helped a little longer before telling her to continue while I took my shower.

I was sure she would become frustrated and give up on the album by the time I returned. That was when I got the second surprise. She had changed completely. She had gone through the entire book and was on the last page or two. This was a surprise because she doesn’t usually spend that much time when she is looking at it by herself. She was her happy normal self. Apparently, she had forgotten about the guests who were coming and no longer had to worry about being prepared for them. Whatever the reason, it was nice to end the day with her in a good mood.

I should add that I had not previously observed anything that would make me think she was “sundowning;” however, her behavior was different enough from other situations that I thought about that. In the future, I will be more attentive to this possibility.

Yesterday Afternoon and Evening

I am glad to report that the afternoon and evening went quite well yesterday. Kate got up from her late-morning rest and we had a very nice lunch and made it back for her 1:30 hair appointment without having to rush. Leisurely going about our daily activities works best for both of us.

We were back home before a big rain storm hit the area. It was so bad that I called the restaurant to make sure the program was still on for the night. It was. I told the woman on the phone that we would come if the rain slackened; otherwise, we would stay at home. As it turned out, the rain was lighter and we went despite the nasty weather conditions. It turned out to be fine. The crowd was a little lighter, but the program was excellent. Kate sat beside the 95-year-old woman who used to run the restaurant before her daughter took over years ago. Another couple we had not met before sat across from us. Kate didn’t participate much, but I don’t think she felt left out. We both enjoyed the evening.

During the afternoon and after we returned home, she was talkative but seemed to have more trouble expressing herself than usual. She talked for an extended period before dinner. I don’t even remember what she talked about. That may have been because I couldn’t understand her. She used a lot of wrong words and often acknowledged it. In addition, her comments were filled gestures, “You knows,” and vague words like “things,” or simply “da, da, das.”

The other talkative period lasted approximately thirty minutes as I was trying to get ready for a shower. Everything had been going smoothly. She had been in a cheerful mood the whole day. That continued as I started helping her get ready for bed. We got to the part where it was time for her to remove her pants, and she refused. I explained that she hadn’t put on her nighttime underwear. That had no impact. I tried to gently coax her and finally said something that changed the tone of our interaction. I don’t remember exactly what I said, but I apologized and suggested we step back and think about our relationship. I conveyed my love for her and mentioned that we have always respected each other and that my only desire was to help her.

She immediately changed her tone of voice and began a lengthy conversation (soliloquy). She started talking about our relationship and how much she appreciated what I do for her. Then she began to talk about how we could help a boy in need of something. I only picked up that he had a sister but little else. It was impossible for me to understand. All I can say is that she talked for thirty minutes and was strong in her belief that she and I together would be able to help him.

Unanticipated Issues

Yesterday things were going well. Kate woke up early, showered and dressed without any difficulty. I was especially pleased because we were going to visit friends in Nashville, and I was eager to eat an early lunch before our departure. We were also early enough to get to Panera for a short time and get back home for Kate to rest another hour.

Lunch went well until very near time to leave when she started looking for her napkin. At first, I didn’t know what she wanted because she couldn’t remember the word for napkin. When I asked if she was looking for a napkin, she said she was. I pointed out that she had put under her plate with her utensils. She didn’t understand and said, “Where is it?” I pointed to it. She pointed to her salmon and said, “This?” I told her it wasn’t and reached across the table to point at it. She didn’t see it. Then I put my hand on it and said, “This is it.” That didn’t work. Then I asked her to pick up her plate. She didn’t understand. I picked it up and put it to the side. Then I showed her the napkin and told her she could wipe her hands with it. That didn’t work either, so I said, “Let me show you.” I got up and went to her side of the table where I picked up the napkin and started wiping her hands. Her mood changed immediately. She said, “I wanna’ get out of here.”

It was a frustrating situation for both of us. I didn’t have any trouble understanding that she was having two problems, both of which are directly related to her Alzheimer’s. One is her vision. The other is her ability to understand directions. I was trying hard not to show my frustration, but I wasn’t successful. As we left the restaurant, she said she couldn’t do anything right. I thought she was upset with me, but it turned out she was only thinking about her inability to follow my instructions. I felt guilty for making her feel that way. After we had been on the road to Nashville about fifteen minutes, she was fine again.

This episode is a good example of how quickly things can change. It is also a reminder of something I already know. I need to be very careful how I respond in situations like this. She is very much aware of her problems, and I don’t want to diminish her sense of self-worth.

Morning Confusion and Fright, But a Pleasant End of the Day

Kate was sleeping soundly when I woke her about 10:45 yesterday. She got up without a problem. I thought everything was fine. It wasn’t until I helped her out of bed that she showed any signs of fright and confusion. It was a time when she didn’t have any idea of who I was but gladly responded to my assistance in every way. I told her I was her husband, and she said, “No.” I said, “How about good friends?” She said, “That’s better. She depended on me to tell her what to do and how to do it. For example, washing hands and brushing teeth were like she had never done either before. I was very careful not to rush her. I knew she had plenty of time to be ready for the sitter. That may have helped. I know she didn’t get irritated with me at all.

After she was dressed, she was disoriented. I took her through the hallway outside the bedroom to see photos of her mother and grandmother. She often guesses the photo of her mother is of her. This time she had no idea. She also expressed less interest in the photos than the past. Then we went directly to the kitchen for her morning meds. That went smoothly. When she had taken the last one, we had a few minutes before the sitter was to arrive. I told her she would be going to lunch with Cindy, and I was going to Rotary. I don’t remember her exact words, but she sternly said something like, “You are not.” I asked her to come with me and took her to the family room. I showed her The “Big Sister” album. She didn’t recognize herself or her brother in the cover photo.

We sat down on the sofa, and I opened the album and showed her the pictures on the first few pages while giving her a commentary on them. Her interest grew. A few minutes later when Cindy arrived, she was happy. Cindy sat on the other side of Kate, and I went to the kitchen to get my things. I walked back to the room to say goodbye and noticed that they were looking at a picture of Kate’s parents. I made a comment about them, and Kate said, “How did you know?” I told her that I knew her parents. She turned to Cindy and said, “I don’t even know who he is.” I said goodbye while the two of them continued looking at the photos. She didn’t show any concern that I was leaving. I felt good that she was comfortable with Cindy.

When I returned home, Kate was, as usual, lying down on the sofa but not asleep. She didn’t express any enthusiasm about my being home, but she wanted me to help her up. I discovered a few minutes later than she was ready to leave. She wanted to go home. I took her to Panera and got her something to drink. She worked on her iPad, and I did the same on mine. She got along pretty well on her puzzles without much help from me. An hour later, I suggested that we eat dinner there instead of going for our usual Mexican meal. When we finished, I took her back home. She didn’t say anything more about going home. This routine of leaving the house for “home” has worked each time I have tried it. That makes it an easy to address this problem. It is certainly better than telling her she is already at home.

Kate worked on her iPad for almost an hour after our return, but she had great difficulty with her puzzles. I was seated in a chair across the room from her watching the evening news. Every few minutes I had to get up to help her. She tired of this before I did and asked if she could get ready for bed. I turned on YouTube with a series of Andre Rieu videos that she enjoyed for an hour and a half. Then I put on some especially relaxing music on our audio system. When I got in bed, she was still awake but very relaxed and happy. That was two hours after she had gotten to bed. That is rather commonplace now. It may be that she isn’t really that sleepy. She just needs to rest her brain for a while. The music relaxes her. She doesn’t have to hurry to get somewhere. And she doesn’t have to experience any of the normal frustrating or intimidating situations she does at other times of the day. Living with Alzheimer’s is an emotional ride.

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.

The Therapeutic Value of Music and Reading

Kate and I have always enjoyed music and, especially, live performances. They have been fully integrated into our lives since her diagnosis. To start with I didn’t think of this as therapy. We were simply enjoying ourselves. A year or two later Kate experienced several panic attacks as a result of my rushing her to get to events on time. One time she hadn’t calmed down when we got in the car to leave. I turned on the second movement of Brahms’ violin concerto. We didn’t talk while it played (about ten minutes) When it was over, she was calm. Since that time, I have used music a good bit to put her at ease even if she isn’t having a panic attack. It makes her happy.

This past Sunday we attended a Christmas show that achieved the same effect. I think she must have been tired because she had gotten up early and did not rest after lunch as she usually does. I know she was a little grumpy when we walked into the theater from the parking lot. We didn’t walk far, but it was too far for her and also chilly. We sat in our seats for ten to fifteen minutes before the show began. She doesn’t like waiting and complained most of the time. I assured her she would like the show, but she was not convinced.

Her mood shifted immediately when the show started. The cast was large and included a number of young children and teens along with the adults. The music, of course, was the key factor. She audibly expressed her enthusiasm after each song. That set the stage for a very nice dinner experience.

It may well be that reading will be another tool in my arsenal to lift her spirits. I looked at my reading to her as a way to occupy her time when her use of the iPad dropped to a few hours a week after years of six to eight hours a day. That night I was looking for something more than amusement. She was grumpy again after dinner. As she began to get ready for bed, she pointed to the ceiling fan and asked me to “turn that thing off.” I told her it wasn’t on. She said, “Well turn it on.” I did, but she didn’t like it and told me to turn it off again. I started to help her with her nightgown, and she said, “I can do it myself.” As she does so often, she apologized for the things she had said, but she continued to be grumpy.

After she got in bed, I asked if she would like me to read The Velveteen Rabbit. She said she would. She didn’t say a word while I read. That was unusual. I wasn’t sure that she was listening and wondered if she might have fallen asleep. When I finished, I said, “Did you enjoy that?” She told me she did, but it was the tone of her voice that was the clearest indication she was all right. She also said that she remembered some parts from the “other time” I had read it to her. I felt good about that because she didn’t recall the book at all previously. I suggested that it made a good bedtime story and that we might do that again sometime. She liked the idea. I was glad. I found it to be a nice way to end our day together. Reading, like music, is a “Win/Win” for both of us.

All’s Well That Ends Well

As I was thinking about waking Kate at 10:45 yesterday morning, I heard her say something. It sounded like, “Are we going to get something to eat?” I was in the kitchen and walked to the bedroom where I discovered that she was both wide awake and cheerful. I said, “Good morning. I’m glad to see you. You look happy this morning.” She said, “I am happy and you are too.” I said, “I think we are both happy people. Maybe that’s what has kept us together so long.” She agreed. Except for her needing/wanting my help getting her up, she didn’t seem like a person with Alzheimer’s at all. There was no sign of confusion. That didn’t last long.

When got to the bathroom, she noticed a photo of our daughter Jesse. Kate loves this picture but never knows who the girl is. We went through our regular routine. She said, “Who is she?” I said, “your daughter.” She asked her name. Then she said, “She’s beautiful.” I said, “Just like her mother.” She said, “Who’s her mother?” When I told her, she was surprised and asked how that happened. I told her that she and I are married, and we had two children. This was one of those times she couldn’t accept that we are married, and I dropped the subject.

After finishing in the bathroom, I got her dressed quickly and easily. Everything was going well. Before leaving I said something that irritated her. I don’t know what it was, but I decided not to find out. She can’t ever explain. We listened to music all the way to lunch. Everything was fine when we got to the restaurant, and we enjoyed our time together while eating. Just before leaving, I misunderstood something she said, and she was irritated again. We listened to music all the way home. She was fine arrived.

She asked what she could do. I gave her two options: work on her iPad or we could look at one of her photo books together. She chose the iPad. I was a little surprised because she has been going directly to the sofa to rest. It was less than fifteen minutes before that was what she wanted. This was one of those occasions when she actually slept. She was asleep thirty to forty-five minutes.

Then she sat up and appeared very alert. It looked like she was going to get up, and I asked if she wanted to go to the bathroom. She said she thought she would walk around outside for a while. That was a big surprise. She hadn’t shown any interest in doing that for almost two years. She surprised me again when she said there is a man she sees working in his yard and she would probably talk with him a little. She was actually picking up on a memory from the past. In both our present and past houses, we have had neighbors who work in their yards a lot. Kate had often see them working, and they would talk a while.

I went with her. For the past year, I’ve had someone working to restore the flower beds after her excessive pruning of the shrubs. I took out eighteen that were dead or “beyond repair.” The weeds had also taken over. It’s beginning to take shape again, and I was eager to see her reaction.

Thankfully, we didn’t get too far. She quickly found a hydrangea and started pulling off the flowers and some of the branches. It is late in the season, so I wasn’t bothered by that. I was, however, concerned that she might start doing the same with some of the shrubs that are coming back. After a short time, she wanted to go back inside to rest.

When she was ready to get up, it was time for dinner. As we prepared to leave, she wanted to take several of her photo books with her. Something she said made me think she thought we had been visiting and were now leaving for home. I told her we were just going to eat and would be back soon.

She was quiet at dinner and didn’t seem to enjoy her meal. She had grilled shrimp and sides of fresh fruit and a cucumber, tomato, and feta cheese salad. I had a Greek salad with grilled shrimp. Knowing she loves shrimp, I asked if she would like some of mine. She said, “What’s that?” I picked up one and showed her. Then I noticed that she was putting scraps from her two sides on a paper napkin. I took notice because she usually puts them on the table.

Then she said, “When are they coming?” I said, “Who? I am not aware of anyone who is coming to see us?” She became irritated with me because she couldn’t tell me, and she thought I would know. As we talked, she became angry and spoke to me very sternly. She apologized for speaking to me that way. Then she started to cry. At this point, we were both finished with our meals. I tried to comfort her. Then I suggested we go home and relax.

When we got in the car, she apologized again. I said, “That’s all right.” She looked sad and said, “I might do it again.”

Once we were home, I turned on the TV to a concert of the music from My Fair Lady. I have discovered that she enjoys the music itself more than the movie. She loved it. When it was over, I played several scenes from the movie in which they sang songs she especially likes. We spent almost two hours doing this, and she was engaged the whole time. She was happy, and so was I. Music came to the rescue once again. It was a happy ending to a very strange day.

Yesterday: A Good Day

It was 7:25 yesterday morning. I had just finished my breakfast and about to take the dishes to the dishwasher. I glanced at the screen of the iPad that is connected to the video cam in our bedroom. Kate was about to sit up in bed. I went back to help her get to the bathroom. When I reached her, she gave me a smile but didn’t speak. I asked if I could help her. She said she didn’t know. I told her it was a beautiful morning and directed her attention out the window to the back yard. She must have been a little groggy because she didn’t respond as enthusiastically as usual. I asked if she wanted to go to the bathroom. She asked where it was, and I told her I would show her.

On the way, she said, “I know this is a nice place, but I want to go home.” Normally, I say something like, “I’ve got good news for you. We are at home.”  That has often worked before but not as much lately. I decided to redirect her attention and suggested we first get to the bathroom and then get dressed.

When we finished, she again mentioned wanting to go home. I told her we first needed to get her dressed. She was obviously eager to get home because getting dressed went more quickly than usual. I know that wanting to go home is a common request of people with dementia. Some authorities interpret it as an effort to escape from the symptoms of the disease. I have always been somewhat skeptical about this interpretation, but I do recognize that Kate has often said things that I believe are references to her Alzheimer’s. They include things like “I’ll be glad when this is over.” “I don’t like this. I know you don’t like it either.” Each time she says these things I try to figure out what she is talking about. I have never been able to identify anything specific. That makes me wonder if she is referring to her general feelings, difficulties, or confusion that accompany the disease. As I observe more of this, I am beginning to accept the idea that wanting to go home is, indeed, a desire to escape her Alzheimer’s and return to a place that symbolizes comfort and peace. What happened after we left the house might also support that idea.

The moment she walked into the family room, she showed her first signs enthusiasm for the day. She noticed a pot of African violets and one with orchids. She also did her usual scanning of the back yard followed by looking at her ceramic cat, the photo of her father, and the photo of our son. She experienced an almost immediate shift in mood.

We arrived at Panera just before 8:30, the earliest we have been there in quite some time. I set up her iPad and opened the puzzle app and then got her a drink and a muffin. By 9:30, she was frustrated over her puzzles and also tired. I asked if she would like to go home. She did.

As we drove to the house, I wondered if she had forgotten about her desire to “go home” or if going to our home would be perceived as going to the home she had talked about earlier. As we drove up to the house, I mentioned it was ours. She said, “Oh, yes. I didn’t recognize it at first.” That is quite unusual. She almost always does even though she sometimes thinks of as where we are staying or a house in which we previously lived.

Once inside she wanted to rest. I turned on some soft music and brought my laptop into the family room and sat with her until just before the sitter came. This was a rare time when she actually went to sleep. I wasn’t surprised because she had gotten up so much earlier than usual. I am sure she slept at least an hour. When she awoke, she looked over at me and smiled. She was very peaceful and happy. We communicate a lot with our facial expressions. I could tell from hers and her voice that all was well. She was at home.

We talked about how nice it was to relax with the music in the background. In a few minutes, I asked if she would like to look at one of her photo books. She did. I sat beside her on the sofa, and we spent ten or fifteen minutes doing that before she was tired again. She rested another thirty minutes before the sitter arrived.

I am always eager to see how she responds to the sitter. I was happy to see that she greeted Cindy with outstretched arms. It was like she had seen an old friend. As I left, I felt good knowing that she had moved so well from wanting to get out of the house and “go home” to having a peaceful morning.

The bonus of the day came when I got back. I found her and the Cindy were engaged in conversation. Kate was quite talkative. They were discussing plants. It isn’t often I see Kate as a major contributor to conversation. I think I was happier than she was.

She was tired at the end of the day and went to bed earlier than usual after being frustrated with her puzzles, but the two experiences of our morning together and her experience with the sitter made it another good day.