Sundowning

Among the many ways in which Kate and I have been fortunate is avoiding sundowning (sundowners, sundown syndrome), and, at this last stage of her Alzheimer’s, I began to think it was something we might not face. Not everyone does. To the best of my knowledge, my mother never did. I know my dad never talked about it. Since I visited them regularly in the late afternoon, it seems I should have had some personal observation if she had the problem.

I am also mindful that life is always changing. That is especially true with dementia. Nevertheless, I was caught a little off guard this past Friday when Kate, who had been happily resting in her recliner, became more talkative. It was more than just talking. The pace was faster than usual. It seemed like she was a bit hyper. Although it was late in the day, the thought of sundowners didn’t cross my mind. After all, I had observed this kind of behavior before and at earlier times of the day.

It was only at dinner when she spoke very sternly to her caregiver who was feeding her that I thought she might be sundowning. That was repeated numerous times before she finished eating. Her mind appeared to be focused on her own thoughts, not food. When it was time for dessert, she had her usual ice cream in which I mix her evening medicine. The dessert became her focus of attention. After that, she was back to normal, and we had a good evening.

Before the caregiver left, I told her I suspected that had been Kate’s first occurrence of sundowners and asked her opinion. She thought that might be the case. The next two days, we had similar experiences late in the day and during dinner. Each time, it was over when dinner ended.

After the three previous days, I was more prepared for a similar experience the next day. When she has been agitated before, my approach has always been to comfort her by speaking softly and slowly and conveying my love and support for her. That has always seemed to help. Based on what I had read about sundowning, I was doubtful that it was likely to work, but I wanted to try it.

Close to 4:30 when Kate became agitated and talkative. She also felt uncomfortable in her recliner and complained about pain. She wanted to get out of the recliner and go home. I kneeled down beside her and told her I would help her with whatever she needed. That had no immediate effect, but I continued my effort to comfort her. She did cool down somewhat but not completely. She was still disturbed.

The caregiver asked me if I had medications to give her for things like this. I told her the doctor had given me a prescription for Seroquel but I hadn’t used it since two days after Kate returned from the hospital at Thanksgiving. I told her I wasn’t ready to use it again. I didn’t want to resort to medication if I might have success without it.

I felt the need for something to distract her. Of course, I thought of music. I pulled my phone out of my pocket and turned on one of Puccini’s best-known arias, “O Mio Babbino Caro.” It’s a favorite of Kate’s. I’m sure it still is, but it didn’t do the trick this time.

I decided to try the Seroquel. The doctor had prescribed 1/2 of a 25mg tablet.  After giving it to her, I told her how much I loved her. As I did, I thought of another song that she likes and that I have often played for her, “A Bushel and a Peck.” I sang it along with the Doris Day recording. As I did, she smiled and started mouthing some of the words. I played it two or three more times. Then I selected a group of very familiar children’s songs from an album of 100 songs. I started with “The Alphabet Song” and continued with others like “Row, Row, Row Your Boat,” “The Bear Went Over the Mountain,” “Old MacDonald,” and “He’s Got the Whole World in His Hands.” Sundowners was a thing of the past.

We had no trouble at dinner. She happily ate everything. Midway the Seroquel kicked in. She was sleepy. As always we took her directly to bed after dinner. The difference this time was that she fell asleep immediately and slept until 9:30 yesterday morning. Normally, she is awake until 10:00 and sleeps until at least 11:00 the next morning.

Yesterday, for the fifth day in a row, Kate had a similar experience just before coming to the table for dinner. The first signs were a desire to go home and discomfort in her recliner. Again at dinner, she protested the caregiver’s effort to feed her. She ate about half of her meal before I decided to go straight to her ice cream for dessert. That turned the tide, and she was fine the rest of the evening.

Although I am unable to pinpoint the cause of these changes, she is obviously disturbed which makes me believe offering her love and comfort along with pleasant distractions have some therapeutic benefit. How well this strategy will work over the long run remains to be seen, but I am going to continue my preferred approach. I will definitely try comforting, music, and anything else I can think of before trying medication. I don’t mean to suggest that medication can’t play an important role in controlling sundowning. I just think it should be used only after pursuing other solutions. I am also going to be more sensitive to keeping her entertained late in the afternoon before dinner. It might postpone or prevent similar episodes.

Coincidentally, we had a telehealth appointment with Kate’s doctor yesterday afternoon. We talked about this, and she reinforced my suspicion that something other than medication is a reasonable first step in addressing the problem.

Happy Day

When people ask about Kate, I often say that she is now at Stage 7 in her Alzheimer’s journey. I sometimes add that it is the last stage that can last for years. I feel sure my reply conveys the seriousness of this phase of the disease. For that reason, I usually add that it doesn’t mean that we don’t continue to have moments of joy. We do, and one of the interesting things to me is how often those moments are intertwined with the common symptoms of this stage. I am grateful because her life is now filled with more delusions, hallucinations, and confusion than she has experienced before. Yesterday is a good example.

Shortly after 8:00, I heard her say something and went back to the bedroom. When I reached her, she seemed wide awake but confused. That may seem a strange combination. What I mean is that she looked and sounded fully awake, but her confusion was obvious as I tried to get her up and into the bathroom.

I told her I was glad to see her and asked if she was ready to get up. She was but said, “What should I do?” I suggested she first move her feet and legs to the side of the bed. She didn’t understand what I meant, so I gently pushed them to the side. She said, “What now?” I told her to hold my right hand while I lifted her with my left. Some mornings this is difficult. She seems to be dead weight. This time she pulled my right hand, and I was able to lift her to a sitting position. It is not unusual for her to scream when I do this. She didn’t this time.

She was very uneasy getting to her feet, but we got to the bathroom without a problem. When I told her to take a seat on the toilet, she was confused and didn’t want to. That is pretty common, but this time she wanted to know why she should sit on the toilet. I gave a very simplified explanation that she couldn’t understand. Then I told her we could skip it. After I said that, she agreed to sit down. Afterwards, we washed her hands, and I gave her a toothbrush to brush her teeth. She didn’t understand what she was to do with it. I helped her get started. Then we went back to the bedroom to dress. That went smoothly.

For a very long time, Kate has responded with great interest when she sees the plants and flowers in our family room, on our patio, and the back yard. That has been less frequent in the past few weeks. It was back yesterday, and we took a few minutes to enjoy them together.

Once she was seated at the kitchen table, I gave her a glass of apple juice and her morning meds. She loved the juice (which she refers to as water) and took her pills without a protest. She actually seemed pleased I had given them to her.

The best was yet to come. I fixed her a slice of cheese toast. Kate didn’t remember having eaten it before and responded with enthusiasm. She ate it more quickly than usual, and I fixed another one. She was quite talkative while eating and after. (I may have noted in an earlier post that she seems to feel especially comfortable at the kitchen table and often wants to linger long after she has eaten. I think she likes the fact that the table is located beside a large window overlooking our neighbor’s front yard and that of another neighbor across the street. Two different sitters have commented on her wanting to stay at the table for as long as an hour after eating.)

I joined her at the table right after fixing her cheese toast. She asked my name. When I told her, she gave me her name, something she often doesn’t remember. It was one of many times during the day she didn’t remember my name or our relationship. Then she began a lengthy conversation. I wish I could tell you what she said, but her speech was so garbled that I couldn’t make any sense of it. Everything she said emanated from a delusion. I do know that she mentioned her mother and later in the conversation made references to other people (“she,” “he,” “they”) and assumed that I knew them. It was light-hearted chatter, and she laughed a lot over 30-45 minutes. I loved seeing her enjoy herself.

During all this, an album of very relaxing music was playing. “Clair de lune” caught her attention. She stopped talking and said, “Listen.” For the balance of that piece and into the next, she closed her eyes and put her hands together as though she were praying. This is not the first time she has done this. I always find it touching. The day was off to a good start. It was a very “Happy Moment” for both of us.

We finally adjourned to the family room where she wanted to rest. I took that opportunity to take my morning walk (inside the house for those of you who are new to this blog). I hadn’t walked ten minutes before she was sitting up. Then we spent a short time looking at one of her photo books before getting a takeout meal for lunch.

The sitter arrived just as we were finishing lunch. I got up from the table to get ready to leave, and the sitter took my place. It was a very natural transition. Kate was perfectly happy with Cindy as she has been since her first few visits . That makes me feel much better when Ieave.

When I returned, they were seated on the sofa looking at a photo book and having a grand time. Kate was sorry to see her go. Their relationship is everything I could have wanted and more.

The rest of the evening went well. We had a pleasant dinner with a takeout meal at home and encountered no challenges getting ready for bed. Kate had not rested at all during the day. That’s rare. As a result, she went to sleep rather quickly but awoke briefly when I got in bed. She was still happy, and so was I.

A Restaurant Experience The Other Night

Although Kate sometimes speaks harshly to me, it is far from an everyday occurrence. She has remained gentle and kind-hearted. Not only that, but she has rarely said anything in public that someone else might take as rude or inappropriate though on a couple of occasions, she has said something to me that surprised the people we were with. Recently, she spoke harshly to the woman who was shampooing her hair. This wasn’t anything serious. She was just frightened by the splashing water. I don’t think the hair dresser thought a thing about it.

A few nights ago at a restaurant, we had a different kind of experience. We had had a nice day. She had been in a good humor, and we had enjoyed our time together at lunch and at home where we toured the house, looked at some of her photo books, and listened to music. She had been resting when I told her I thought it was time for us to go to dinner. She got up easily and wanted to go to the bathroom. As we were about to leave, she looked like she was troubled though she was quiet in the car.

She was very uneasy walking from the car to the restaurant. This is something that is becoming common. Her vision fools her into thinking the pavement is much more uneven than it is, and she is quite afraid of falling. Once we got to the table nothing seemed right to her. She thought it was taking a long time to get our drinks and place our order though it hadn’t.

She was confused and not especially interested in anything she was served. I tried to find something she would like but wasn’t successful. Our server was someone who has served us a long time, but Kate responded as though she had never met her. She wasn’t rude, but she didn’t express any special pleasure in seeing her. That was a surprise. At one point, she was bothered by something in her teeth. The server asked her about it, and she opened her mouth to show her much the way a small child would do. The server asked me if they were her real teeth. Before I could answer, Kate said she had one tooth that wasn’t hers. I was stunned. It was one she got long before I knew her. We’ve replaced it one time, but that was probably twenty or more years ago. I haven’t heard her say anything about since that time, and I had almost forgotten. How in the world she remembered I’ll never know.

I wish I could remember all of the things that happened. I know it was very clear to the server that she was not the same Kate she had seen before..

Her mood didn’t change as we walked to the car. When I opened the car door for her, I started to take off her mask as I usually do. She was angry and snapped at me. I was surprised. She is always eager to take it off and often does so herself before we get to the car. I apologized. After getting in the car she was fine. She did, however, wear the mask all the way home and didn’t take it off until we were in the house. What brought on the episode at the restaurant and why she changed so quickly once in the car remains a mystery.

I haven’t observed anything like it since then although I have noticed an increase in her uneasiness walking to and from the car. That is especially true when going to a restaurant or to her hair dressers. I am sure the same would be true for other places if we were going other places. I think this is largely a result of her poor eyesight. On the other hand, I notice she is more distirbed or frightened by things she hadn’t expected. Noise is one of those. She seems to feel less and less comfortable in a world that seems stranger and stranger to her.

An Active Day With a Few Surprises

Kate continues to bounce from “knowing” me to “not knowing” me. Saturday she got up late. She didn’t know me and was suspicious of me. Sunday she recognized me immediately as her husband. Yesterday she was awake early (about 7:00) and didn’t recognize me. This time, however, she seemed perfectly comfortable with me as though we were very well-acquainted.

She asked my name several times including once at breakfast. Then she asked if I were married. Before answering, I asked if she were married. She said she wasn’t. I said, “I’m not either.” I asked if she wanted to be married. She shrugged and said, “Maybe sometime.”

After breakfast, we went to the family room where I planned for us to look at one of her family photo books, but she was tired and rested for close to an hour. Then she asked what she could do. I suggested that we look at one of her photo books. She responded very differently. She seemed a little uncertain about me and expressed hardly any interest in the photo book. We completed it, but she was never engaged. It seemed like she was irritated with me, but I couldn’t think of anything I might have done to cause it. I suspect her brain had made some critical changes while she rested. She didn’t want to look at anything else and wanted to rest again. I took her to her recliner where she rested again.

I’ve served on only one church committee during the past 3-4 years. It’s the one that calls members on their birthdays. While she rested, I made my birthday calls.  When I finished, she gave me a big smile and said, “You did that well.” She was in a completely different mood.

The sitter came at noon. She and Kate were just about to eat lunch when I left for Rotary. Kate was happy and didn’t show the slightest concern about my leaving.

When I returned about 3:45, I saw the two of them standing in the family room near the door to the kitchen where Kate appeared to be looking at her ceramic cat. I quickly discovered she was rather hyper though not agitated. The sitter said she had been walking all around the house and had been doing so for quite a while before I arrived.

This has happened a couple of times before when I have been with her. She walks around looking at everything with great interest. I continued to walk with her after the sitter left. I gave her my typical commentary. We spent at least another forty-five minutes looking around the entire house before taking a seat in the family room. She wasn’t tired, and we looked at her “Big Sister” album. Nothing seemed to ring a bell with her, but she was quite interested. We spent another thirty minutes with it before going to dinner.

We went to a nearby Mexican restaurant. On the way and during the meal, she spent a lot of time thanking me for taking care of her. She was sincere, but the way she expressed her appreciation was consistent with the hyper behavior that began while the sitter was with her.

She did something else that she has done a couple of other times at restaurants including this one. She wanted me to take pictures. First, she wanted our server to take our picture. Later in the meal, she asked me to take a picture of her. She asked me to wait while she got ready and began to create a little “food art” with her meal. This was very much like something she had done at home recently.

She began by taking some of the food off her plate and carefully placing it on the table. She also moved her sunglasses, napkin, and drink to places she thought were aesthetically pleasing. When I thought she was through, she took almost all of the food and placed it back on her plate. As we left, she wanted one more picture of herself.

When we got home, I played the other half of Sound of Music that we had started a couple of nights ago. Although she was in bed, she was more engaged than I have seen her in a long time.

She was still awake when I got in bed. I moved close to her as I always do. I quickly found that she didn’t recognize me. She told me her husband would be home soon and asked me to move away from her. Despite that, she seemed rather comfortable with my being there, just not that close. Not a typical way to end our day.

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.