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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.

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Sundowning?

One of the common symptoms associated with Alzheimer’s and other dementias is sundowning or sundowner’s syndrome. Until this week, I haven’t noticed this with Kate. The classic signs usually involve confusion and anxiety that occurs around sunset or early evening. She’s experienced a lot of confusion and some anxiety, but it has not been typically associated with the evening. In fact, afternoons and evenings have been the most predictably good parts of her day.

Kate’s behavior the past two nights leads me to suspect sundowning might be entering our lives. Thursday she was awake earlier than usual, around 8:30 as I recall. We had enough time for her to have breakfast and rest an hour or so before going for lunch around 11:30.

The balance of the day went well. She rested some, and we looked through one of her photo books. We had an early and pleasant dinner at Casa Bella. The pleasantry evaporated when we pulled into the garage at home. When I opened her door, she looked frightened and refused to get out of the car. She told me to get in.

I complied, and we chatted for a few minutes. She thought there were people in our house and wanted to avoid seeing them. I mentioned that it was our house, and we hadn’t invited anyone. We chatted a few minutes. Then she said, “Well, what do you want to do?” I said, “I think we should go inside and get ready for bed.” She said, “Okay,” and we went inside.

Everything was fine until near the time that I got in bed. She was frightened again and mentioned something about “them.” That is not unique. She frequently believes there are others in the house or on the way. I went in another direction and said, “Why don’t I come to bed now. I’d like to read something to you.” I got The Velveteen Rabbit and hopped into bed with her.

I’ve been reading the book to her for several months now, and she has never given me any sign that she recognizes it or has ever read it before. Her immediate response varies. Sometimes she is reluctant to go along with my suggestion that we read it. Other times, she seems to like the idea. In those cases, I get the feeling she just wants the comfort of our engaging in an activity together. That’s the way it was that night.

She didn’t make her normal audible responses to specific passages that catch her attention, but she did begin to relax. By the time we reached the end of the book, she was at ease. I thanked her for letting me read to her and told her I loved her. She said, “Me, too.” I turned out the light, and we were off to sleep.

Yesterday, she was wide awake when I got out of bed. She said wanted to get up. I suggested that she let me get up first and dress and then help her. She agreed. I thought she would be asleep by that time, but she surprised me. I got her up at 6:50, and fixed her breakfast. We had a good time. She was talkative and always enjoys her cheese toast. When she finished, she wanted more and enjoyed it just as much.

After breakfast, we went to the family room and looked at one of her family photo books until she wanted to rest. That was about 9:00. I had a Zoom meeting with my Men’s Coffee Club at 9:30. We were through at 11:00. I thought that would give us plenty of time to have lunch before I had another Zoom meeting with a United Way committee.

That idea went by the wayside when I discovered that Kate had gotten up from her rest just before I finished with my men’s group. She was looking around the house. When I mentioned lunch, she wasn’t interested. I decided to have lunch delivered. Before it arrived, she was resting again. Time was also running close to my noon meeting. I decided to eat after the meeting.

That turned out to be a good idea. Kate was ready to eat when the meeting ended. We were about to sit down when Mary, our Friday sitter, arrived. She had picked up a lunch for herself, and the three of us ate together. I have found that my departure is much smoother when I don’t have to leave immediately after the sitter gets here. That worked especially well yesterday. Kate was talkative, but it was difficult to understand what she was saying. When I returned, they were having a good time looking at one of Kate’s photo books. Mary said they had talked and looked at books the whole time I was gone.

We picked up a takeout meal for dinner. Before leaving, Kate wanted to go home. I told her we could pick up our dinner and take it home to eat. We enjoyed our meal, and I thought we would be off to the bedroom to get ready for the night. Kate had other ideas. She wanted me to take her to her home, not mine. On the way home, she repeated that she wanted me to take her to “her” home. I felt the need to prepare her that it was my home. I told her it was late and that it was best that she stay at my home and that I could take her to her home “in the morning.” She said the clothes she would need that night were at her home. I told her I had clothes for her. She said, “Well, I’d better call my mother.” A moment later, she said, “She’s not going to like this.” I assured her it would be all right. She was hesitant, but she agreed.

Once inside, she was still uneasy, but she let me help her in the bathroom and getting dressed. I put on some music that I thought she would like and helped her into bed. Then I took my shower. When I got out, I think she was asleep. I know that she didn’t say anything until I got in bed. Then it was just a soft chuckle. She sometimes does this to acknowledge that she is awake. On the other hand, it could have been that she was having a dream.

Was this a case of sundowning? I don’t know. She does seem to have had more delusions in the past few days. I have another thought. Following the guidance of Kate’s doctor, I have gradually eliminated her Aricept  (donepezil). She took the last tablet on Tuesday. Is this a symptom of withdrawal? Again, I don’t know. It could be that the experiences of the past two nights are not sundowning or signs of withdrawal. It could also be just another stage in the progression of her Alzheimer’s.

No matter how much a caregiver knows, one never knows it all. But that doesn’t keep us from trying. I think I’ll go back to her Aricept  tonight and follow the same withdrawal schedule we have for the past two weeks.

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Sundowners?

Last night when Kate came inside from pulling leaves, her top was soaked from perspiration. When I commented on how hot she was, she said she was going right in to take a shower. Then in a whisper she asked a question that she occasionally asks, “Are we staying here (pointing to our bedroom) tonight?” I told her we were. Then I went back to the bedroom where I was watching TV. In a few minutes she came in the bedroom wearing different clothes from those she had been wearing. She had not had a shower. She asked me, “What should I do now?” I told her it would be a good time for her to take a shower and put on her night clothes for bed. She accepted that and only asked which bathroom should she use for her shower. After her shower, she returned to the bedroom in a robe but no gown. I asked if she would like me to get a gown for her. She said, “Yes, but first get me another towel.” I got both a towel and a gown. When she was fully dry, she put on the gown and got into bed with her iPad. She was in a very good humor. I continued watching an ETV program on the migration of Zebras in Botswana.

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Sundowners?

I have mentioned signs of possible sun downing in prior posts, but I don’t believe I have said anything in a while. Tonight Kate came in from outside without my calling her in. I suspect that was related to the heat. She has not been staying out very long lately.

Once inside, she said or did several things that in combination are somewhat unusual. First, she came into the bedroom where I was watching the news and asked, “What now?” I told her it was after 8:00 and that I was going to take my shower. She said she needed to take as shower as well. I told her she could go first. She had the clippers in her hand and walked toward the end table on her side of the bed and asked if she should put them in there. I told her I thought it would be better for her to put them in the laundry room where she would find them when she went outside.

She left the bedroom and came back in a few minutes. She stood by the bed, looked at me, and asked, “Are we sleeping here tonight?” I told her we were. She asked me what she could do. I told her it would be a good time for her to get her shower. She left to do that.

When she came back to the bedroom, she had taken her shower and put on a robe without a night gown. This is something she does fairly frequently when she can’t seem to find a night gown. I asked if she would like me to get her.a gown. She said she would, something that is a fairly typical response. That seems surprising since she continues to be as independent as possible. Maybe she is just tired at the end of the day.

She started picking up a few things on her side of the room. One of the things was a bra hat she picked up and threw to me. I must have looked surprised. She said, “Well, you said you would know where to put it.” Of course, this was one of those occasions when she thinks I have said something when we haven’t had any such discussion at all.

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More Signs of Sundowning?

Since returning from dinner, Kate and I have been sitting in the family room. She has been working puzzles on her iPad. I have been watching the news. She has had a little problem taking her pills at night. It seems to cause a little reflux. I decided to divide her pills so that she takes half now and the other half a little later.

After she took them she got up and went to her room. She came out in a few minutes with another top over the one she had been wearing. She indicated she was ready. I asked her, “For what?” She told me, “Anything.” I told her I thought she was going to get ready for bed. She said it was too early. Then she went to our bedroom and said, “I’m just going to lie down in bedroom with my iPad for a while.”

I walked back to take my medicine. As I was leaving the room, she called my name and pointed to her iPad. I didn’t know what she was communicating and walked over to her bedside. She asked, “Should I take it with me?” I told her we weren’t going anywhere now. Then she asked me what she should do with her iPad. She asked if she could just put it down beside the bed as she usually does. I told her that would be fine

This is another occurrence of her acting as though we are going someplace and/or that we have spoken about doing something when nothing of the sort has happened.

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Possible Sundowning and Other Things

I have heard other people talk about Alzheimer’s patients and sundowning. I have wondered if that is something that Kate is likely to experience. Up until now I had not noticed any signs of what I believe to be sundowning. There have been several times recently when I have wondered. These instances occurred when we had planned to go someplace for the evening. When I mentioned that it was time for us to get ready, she has reacted very negatively. The times I remember involved going to a concert. One was the symphony. The other, I think, was a local choral group. This past Saturday it happened again. We have missed the last two symphony concerts. I was quite interested in the one this past Saturday because of the soloist (a former child prodigy who is now 33) who was playing the Mendelssohn violin concerto. The orchestra was playing the Tchaikovsky 5th Symphony. I thought this would be a concert that Kate might enjoy; so I made reservations to a luncheon with the soloist this past Friday. We went, and she enjoyed being there to meet her. We talked about Saturday’s concert. She was interested. I mentioned it to her several times on Saturday. Then about an hour before we were to leave I told her it was getting time for us to get ready. This made her very unhappy. In fact, she had gotten out of the bed and then got back in and pulled the covers over her. I tried not to force her to go but said, “”But you had told me you wanted to go. You enjoyed meeting the soloist at lunch yesterday.” I went on to tell her that she didn’t have to go, that I didn’t want her to be upset, that I would go on. After a few minutes, she decided to go with me. She ended up enjoying the concert and got to speak with a number of people we know. It was after this that I began to draw an association with sundowning. In the future I will be more careful to pay attention to her behavior around the end of the day.

The second thing that happened was yesterday. I had come home from church right after Sunday school as I have been doing for several months now. When we got home after lunch, Kate worked on her iPad. Then she lay down to rest. When she got up, I could tell that she was down. I decided to see if she would like to eat dinner a little early. She said she would. She was silent in the car going to the restaurant, and she wanted me to be quiet. As we were about to get out of the car, she said she was “down.” Then she went on to say, “I just can’t believe they would say that.” (I should also mention that in the past 24-48 hours she has mentioned something that indicated she thought I was checking with some friends in Nashville about something. I presumed this involved this same issue.) I asked her if she were talking about the same couple she has mentioned before. She nodded. She seemed seriously disturbed. When we had ordered, I reminded her of something I had said a week to ten days ago. I said that I really didn’t want her to have to struggle so because I believed she had had a dream about the whole thing and that I was unaware of our friends ever saying anything about her mother, certainly not to me. She appeared to accept it but with a little doubt.

This morning while we were at Panera she seemed in a good mood. At one point she volunteered that she had decided I was right, that she had just dreamed the whole thing (again without saying what the “whole thing” was) and that now she couldn’t even remember what they said. She told me she could remember my telling her it was a dream but not what they said. What I am hoping is that she will not call up her memory again so that we have to go through the same process again. She told me she felt better about our friends.