For what I believe is the third day in a row, Kate has gotten in bed right after returning from lunch. There were times like this in the distant past; however, they usually occurred after she had gotten up early that morning. She has often talked about being tired, but she has never acted on that the way she is doing now. She won’t rest as long today because I made an appointment for her to have a massage at 3:30. After that, we will have about an hour before leaving for jazz night at Casa Bella. It will be telling if she rests again during that break.
Sleep and No Sleep
Kate’s sleeping continued to have an impact on our schedule yesterday and early this morning. I wasn’t too surprised when she got up earlier yesterday. It was around 10:00. She got up and showered and then went back to bed. When she goes back to bed like this, she doesn’t usually go back to sleep. Most of the time she just relaxes and runs her fingers through her hair. That is what she did yesterday. Had I let her, she might have stayed in bed too long for us to have lunch together. I didn’t want that, so I got her up and dressed. She was a bit more assertive about her independence getting dressed but had to ask for help several times. Our timing worked out well. Without rushing, we were able to get to lunch and back home about fifteen minutes before Mary arrived.
When we got home, Kate followed me to the bedroom and got in bed just as she had done the day before. That gave me a few minutes to talk with Mary before I left. She told me that Kate didn’t want to get up the last time she was here and that she (Mary) didn’t want to push her too hard. I told her she did the right thing although I regretted that it was 3:15 before she got up.
I walked Mary back to the bedroom before I left and told Kate I was going to the Y. She gave Mary a warm greeting. When I returned, they were talking in the family room. I didn’t have time to talk privately with Mary, but I got the impression that Kate had rested most of the time I was gone.
Around 3:00 this morning, Kate said, “Hey.” I said good morning and told her the time and that she still had a good bit of time to sleep. We didn’t talk much, but I could tell she was awake about an hour.
At 4:30, she got up to go to the bathroom. She got back in bed about twenty minutes later. That put me pretty close to the time I feel comfortable getting up. Having been mostly awake since 3:00, I decided to sleep a little longer and got up an hour later.
Apart from the way her sleep has changed our routine, we had a good time together. She did tease me a little after getting up yesterday morning, but it wasn’t mean-spirited at all. So we enjoyed the day. We just had less time together.
I don’t know what to expect for today. Will she get up early again because of all the sleep she got yesterday, or will she sleep late because she lost a couple of hours sleep during the night? I’m guessing it will be the latter. Fortunately, we have no special commitments. My only concern will be getting something to eat before noon. I have some granola I can snack on to hold me over until she is up.
The (Daily?) Report on Sleep and More
Each day seems to give me added reason to believe that Kate is noticeably drifting into another stage of her Alzheimer’s. That’s been true the past two days. As I had suspected, she got up earlier two days ago (Monday). I was in the kitchen when she walked in at 9:25. She didn’t say a word. She just looked at me. I said good morning and asked if I could help her. She said, “I want to take a shower.” I got up from my chair and gave her a hug. Then I took her hand and told her I would take her to the shower. Like a little child with her parent, she held my hand until we reached the bathroom. Then she wanted me to tell her exactly what to do. I left her in the shower. I checked on her in another fifteen minutes and found that she was back in bed.
Since the sitter was coming at noon, I decided to let her rest a little longer. I got her up over an hour later. That gave me enough time to have her dressed for lunch. I called the agency and asked them to have Valorie meet us at Panera. The timing worked out well. Valorie arrived right after I had ordered Kate’s meal. Although I am sure Kate did not remember her, she gave her a warm welcome, and I left while they waited for Kate’s lunch to be ready.
Even though I had let her rest another hour, having gotten up earlier that morning caught up with her during the afternoon. She was resting in a chair in the family room when I got home at 3:30. Valorie said she had not been resting long, but Kate did not acknowledge me when I came in the room or after Valorie had left. I went over to speak to her. She was awake but tired. After a while, I asked if she would like to lie down on the sofa. She did and continued resting for another two hours.
As in the past, I wondered if she would be able to go to sleep at her regular time that night. At 9:30, she was enjoying working puzzles on the iPad and didn’t want to go to bed. She did, however, accept my suggestion that it might be better to go to bed so that she wouldn’t sleep so late yesterday.
I let her sleep undisturbed until 11:00 yesterday when I turned on some choral music that she likes. At 11:15, I went to her bedside and sat down. She silently acknowledged my presence with her eyes. I asked if she were ready to get up. She nodded that she was not. Then I said, “Your husband would like to take you to lunch.” She said, “You’re not my husband. I wouldn’t marry you.” I can’t remember exactly what she said after that, but it was something that made me think she thought I was Frank Sinatra. I didn’t push her on this. I asked again about getting up. She said, “I’m not getting up.” Then I brought up lunch again, and she said she would like to eat. I told her I would help her get up and dressed. To my surprise, she accepted that. My only explanation is that she is getting used to doing what I suggested and did it reflexively.
Once she was up and dressed, she was in a talkative mood. She teased me (a bit harshly) as we were about to leave for lunch and in the car. Once inside the restaurant, we were greeted by one of our regular servers whom we hadn’t seen in several weeks. We chatted with her as we ordered our meal. I think that changed Kate’s tone a bit. We had a very nice conversation at lunch. During much of the time, I was trying to explain to Kate something I had said or something that the server and I had talked about. Some of our conversation had to do with music. The music on the restaurant’s sound system was strikingly different today. It was mostly 50s music. Kate and I recognized almost every song.
After lunch, we went to Best Buy to return a DVD player that I bought a couple of months ago. It is a different brand than the Samsung TV to which I have had it hooked up. It had never operated as smoothly as the Samsung player we had previously. The trip to Best Buy turned out to be another social occasion. Kate was in a playful mood and talkative.
When we went to the customer service counter, I noticed that the man in front of me was returning one SONOS audio speaker for a SONOS subwoofer. I also have a SONOS system and mentioned that to him. That led to a conversation about our experiences with it. As he finished up his transaction, Kate went over to him and put her hand on his shoulder, pointed to me, and said, “I should have warned you about him. He just talks and talks.” After he left and I was explaining why I was there to the woman behind the counter, she got involved in a conversation with the young man behind us. I didn’t catch all that was said, but she was joking with him, probably about me.
When I was finished, I went to the back of the store where the DVD players are located. I got a salesman right away and told him what I wanted. He led me to it, and we quickly took care of the transaction. As we started to walk away from him, I saw the display of SONOS equipment. I mentioned my audio system. Kate then went over to him and said, “Don’t let him get into this. He will talk all day.”
On the way out we walked past a display of baby monitors. I’ve been thinking about buying something like that to monitor Kate in the morning while I am in the kitchen and stopped to look. Kate had no interest in the monitors, but there were two large photos of babies behind the monitors. She loved them and commented on their beautiful smiles. A moment later, we passed by a life-size cardboard display of a man. She stopped and said goodbye to the man in a way that was very typical of a small child.
When we got home, Kate walked directly to the bed, got in, and pulled the covers over her. She remained in bed for over two and a half hours before I went into the bedroom to see if she was ready to get up. When I sat down on the bed, she looked up at me. I told her we would be leaving for dinner in forty-five minutes and asked if she were ready to get up. She indicated she wasn’t. I told her I would let her rest a little longer and would get her up for dinner. She said, “Good.” This was the first time I had let her rest so long. This meant that she had been up only three and a half hours all day.
As promised, I went back a short time later and got her up. We had nice dinner. As she often does, she said she would probably “crash” when she got home. She didn’t, but she did get to bed at 9:45. That is pretty typical. The question now is what time she will get up this morning. This is another day for the sitter. I hope she will be up in time for us to have lunch before Mary arrives. If not, I’ll let Mary take care of everything.
Sleeping late has made a significant difference in our daily morning routine. I can’t help wondering if we are moving toward a similar change in our afternoons. Just as we have seen a dramatic decrease in the number of visits we make to Panera in the morning, we are beginning to go less often to Barnes & Noble in the afternoon. Our lives are changing.
Update on Clothes
I recently mentioned the number of recurring themes in my posts. From very early, one of the most persistent ones has been Kate’s clothes. When I say “clothes”, I really mean a variety of issues that involve clothes. At first, it was simply finding clothes for Kate to wear. She didn’t hang them up after wearing them. They were scattered on the floors and furniture of three bedrooms. The problem was exacerbated by her gaining weight and not fitting into her clothes. That led to issues of buying new ones. We went to the stores where she had shopped for years. They tended to stock nicer lines of apparel than suited her needs. They were also expensive. She still wanted to be actively involved in the purchase decisions. She selected things that she wouldn’t wear every day, and she attended fewer special occasions. She was becoming less and less attentive to soiling her clothes. Over time, she started wearing her good clothes to work in the yard. At first, I would get her to put on her yard clothes, but later I gave in.
One of the big steps forward was Kate’s cleaning up the mess in the three bedrooms. We never talked about it. One day she just started picking things up. As she did, I starting discovering the ones that fit and giving the ones that didn’t to our housekeeper. Then I arranged the clothes in the closet she used most often. I put all the tops on the left side arranged by color. I put all the pants on the right side, also arranged by color. Until recently, that had kept me busy because Kate never hung them back in the places I intended.
Kate continued to gain weight. That meant I had to buy larger sizes than in the past. I finally resorted to catalog shopping. That worked very well. I have bought pants, tops, sweaters, jackets, underwear, shoes, and socks. I had to experiment a little with the sizes. That meant a few returns on some of my first orders and off and on since then. I have found several brands to choose from. I have also settled into pants that stretch at the waist. I also buy at least two and sometimes three identical pants in the same color. Online shopping has certainly made my life much easier.
She was still picking out the clothes she wore each day six to eight months. That meant that she sometimes picked out something that was not quite right for either the weather or the occasion. Neither of us liked my having to be so involved with her daily attire.
Now everything involved with clothes is easier except for keeping them clean. The problem isn’t getting her clothes soiled from working in the yard. She no longer works outside. It arises from toothpaste she gets on her tops and food and sauces she gets on tops and pants. That has me washing a lot more now than in the past. OxiClean and I have become good friends. The washing itself isn’t a big problem. In fact, I find that washing and folding clothes are almost therapeutic. That has surprised me because I resisted taking over the laundry responsibilities for a good while. Initially, I tried to prevent as much soiling as I could. Of course, that was a battle I couldn’t win. It’s still hard for me to deal with her clothes getting dirty so quickly. It is not unusual for me to get her a clean top to wear and discover it has toothpaste across the front of it before we leave the house. That’s the OCD in me coming out and is my problem, not hers.
Issues surrounding her clothes present very little problem now. She has things that fit. I know where they are. When she needs something new, I know how to get it without leaving the house. Some of this has come at a cost. The major reason some things are better is that Kate is now more dependent on me for help. I determine what she wears day and night, and I am increasingly taking more responsibility for getting her dressed. I don’t mind any of those things; however, I wish for her that she were able to do more for herself. That’s a sad thing.
Follow-up on Sleep
Kate slept about two hours yesterday afternoon. We had about forty-five minutes before I had planned for us to have dinner. I suggested looking at her photo albums. She liked that. We started with an album of her father’s family. She was quite interested and talked about her feelings for her family as we went through it. When we finished, we picked up the “Big Sister” album that her brother Ken had made for her this past spring. The photos in this one are larger than the other album. That made it much easier for her to identify the people in the pictures. Once again, she is attracted to the same pictures she mentioned previously when we looked through the album. One of those pictures is of her with her brother when she was about five or six and Ken about three. She almost always talks about the two of them in the third person. “Aren’t they cute.” “Look at their smiles.” Sometimes it is clear that she doesn’t realize that she and Ken are the two children. Other times I think she does. She also pays particular attention to the smiles. The pictures she likes best have nice smiles.
After dinner, we came back home where I put on YouTube videos. This time I chose a couple of opera singers, Kristine Opalais and Juan Diego Florez. I played a good two hours worth before we went to bed. She enjoyed them and didn’t want me to turn them off, but I told her they were videos, and we could play them again whenever we wanted.
She went to sleep rather easily and slept until 6:00 this morning when she got up to go to the bathroom. We have the sitter today. I also go back to Rotary after the Christmas and New Years break. If necessary, I’ll let Valorie get her up and take her to lunch. I suspect, however, that she might be up earlier today. She has had quite a bit of sleep in the past few days.
Addendum on Sleep and Confusion
Kate still seemed tired this morning after waking her. I let her stay in bed another thirty minutes before getting her up for lunch. I am sure she would have remained in bed much longer without my encouragement to get up. She was happy to have me help her get dressed. At one point, I asked if she thought I was rushing her. She said, “No. You’re a good daddy.” As I had done earlier, I let it go without correcting her about my being her daddy. On the way to lunch, she said something else about my being her daddy. A few minutes later, she asked, “Are you my daddy?” I said, “Actually, I am your husband.” She gave me the usual surprised look and said, “And I’m your wife?” She didn’t raise any further questions. I couldn’t help wondering if she had asked the question because she herself was beginning to question whether I was her daddy. I’ll never know.
Driving to and returning from lunch, I played a CD that I bought three or four years ago in Memphis while we were visiting Jesse and her family. It is a compilation of show tunes and old standards that are quite familiar to our generation. I played this several days ago, and she had liked it. She was just as taken with it today. On the way home, she started singing with “Some Enchanted Evening.” Then she wanted me to sing with her. It is an inexpensive CD that has singers who are unidentified. During almost each song, Kate asks me who is singing. Each time I tell her I don’t know and that the company who made it kept the costs down by using unknown musicians. Of course, there is no way she can remember.
On the drive home, she mentioned that she was tired and might take a nap this afternoon. She often says that but forgets soon after we get home. That wasn’t true this time. When she walked into the family room, she headed toward the sofa and asked if she could just rest a while. I told her that would be fine. That was about an hour and fifteen minutes ago. She has been sleeping soundly, not just resting. It makes me wonder about yesterday. I didn’t watch her as closely as I have done today. She might have actually slept then as well. She just opened her eyes and said, “Hey.” Her eyes are closed again. I think I will let her sleep another hour or so if she wants to. She must need it.
Confused This Morning
A few minutes ago, I went back to the bedroom to wake Kate. She opened her eyes and smiled as I sat down on the bed beside her. I said, “Good morning, I love you.” She said, “I love you too cause you’re my daddy.”
Sleep
There are a number of recurring themes that appear in my posts. One of those is Kate’s sleep. For most of the years since her diagnosis, I didn’t feel it necessary to comment on sleep. Looking back, I believe that was a result of Trazadone’s doing just what it was prescribed to do. Prior to that Kate had often awakened in the middle of the night and couldn’t go back to sleep. Her own prescription for that was listening to books on her iPod. She did that for several years, some of which preceded her diagnosis. After her doctor introduced Trazadone, she slept through the night without a problem. That put us on a regular schedule though sometimes she went to bed earlier than she had before. I now realize that probably related to what time she took her evening meds.
It wasn’t until this past spring that I noticed a change in her sleep. Her pattern was more erratic. She started sleeping later than before, but she sometimes got up earlier. We took her off Trazadone thinking that it might be the cause of the change. It did make some difference, especially at first. She began to go to bed a little later and closer to the time I went to bed. Over the ensuing months, she has gotten into a pattern of sleeping later. She is also much slower to get ready once she is awake. That is especially true when I wake her.
That is background for what I have observed in the past few days. Two days ago while the sitter was here, she didn’t get up until 3:15. I was concerned that she might not be able to get to sleep that night. I needn’t have worried. She went to sleep at her regular time and slept through the night. Not only that, she only got up when she did because I got her up. That was around 11:00. I thought she must have had plenty of sleep during the previous 24-36 hours.
As often happens, I was wrong. When we returned home from lunch, she wanted to know what she could do. I suggested that we sit in the family room and go through one of the photo albums of her father’s family. She liked the idea and enjoyed looking at the photos on the first few pages. Then she said she was sleepy and asked if we could look at it later. I told her that would be fine. She lay down on the sofa and rested for a full two hours before I got her up. It was almost 5:00. I told her it wouldn’t be long before going to dinner. She said she would like to go right then. First, she wanted to go the bathroom and brush her teeth. It was almost thirty minutes later that we left.
Once again, I thought she might have trouble going to sleep last night. Again, I was wrong. She had no problem at all. I guess the next question is “Will she sleep late again this morning?” I’m not making any predictions. I’ll just wait and see. One thing seems to be sure. Even though she surprises me by getting up early some mornings, she needs more sleep now than she used to. What this means as we go forward is unclear. I know from other caregivers that their spouses often slept more than Kate. I am beginning to accept that Kate is on her way to spending more of her time in bed. As always, time will tell.
Welcome to Living With Alzheimer’s
January 25, 2024
This site consists of a journal I started on January 21, 2011. That was the date on which my wife, Kate, was diagnosed with Alzheimer’s disease. It is an account of our lives since that time and includes the symptoms Kate has displayed as well as how we have adapted. You will also learn about our frustrations and problems.
What may surprise you is how much we have been able to enjoy life and each other even as we experience the toughest challenges of this disease. In that respect, we have been more fortunate than most couples who travel this road. Kate has declined significantly in recent years and has been in the last stage of Alzheimer’s more than three years. We both tested positive for COVID two weeks before Thanksgiving in 2020, and Kate spent eight days in the hospital. She recovered quickly from the physical effects of the virus but it took several months to recover from the trauma of being taken to the hospital by ambulance and the hospital experience itself.
In early February 2022, she had a stroke. That has also had an impact on her. She was an early stage of aphasia, and the stroke made that worse. She doesn’t talk much, and when she does, it is almost impossible to understand what she is saying. Every day, however, she says a few words or sentences that we can understand clearly. The stroke also affected her right leg, She is unable to straighten it.
Although our lives have changed significantly, we continue to enjoy life and each other. We can’t be as active as had been, but we still get out as much as we are able. We live in a continuing care retirement care community. Every day we go out for ice cream at 3:30 and go from there to dinner at 4:30. That gives us enough time to have a leisurely dinner and get her to bed around 6:30.
I don’t know what lies ahead, but we began our journey with the intent to enjoy life and each other for as long as we could. That seems to have worked in the past, and I am hopeful that it will serve us well in the future.
Thank you for your visit.
Richard Creighton @LivingWthAlz
Another Example of Kate’s Intuitive Abilities
I’ve written two posts in the last few days that deal with Kate’s intuitive abilities. This is another one. Last night she had an emotional experience that illustrates how powerful those abilities can be. This was far from the first such experience, but it was especially intense and lasted over a twenty to thirty-minute period of time.
It occurred after we returned home from dinner. About two weeks ago, she and one of her sitters had watched the first half of Les Miserables. It had been a while since the two of us had watched it, so I turned on the second half. As on other occasions, she quickly became engrossed. Periodically, I noticed that she was whimpering a bit as she watched. She was also making audible expressions of her pleasure.
Close to the last third of the performance, I brought her meds to her. Then I started to refill the pill holder in the bathroom. I was just about finished when she called my name. It was obvious that she was moved by what she was watching. When I responded, she asked if I could come to her. I went over to her and got down on one knee beside her chair. I asked what I could do for her. She said she just wanted me to be with her. Then she took my hand. I said, “It’s beautiful. Isn’t it?” She said, “Beautiful and sad.” She talked off and on for the remaining portion of the performance.
She thought it was so sad that we have wars. She explained that she believed there are times when war becomes necessary but it is so horrible that so many people have to suffer. She has always been moved by WWII and specifically the Holocaust. She said she couldn’t understand why so many Jews had been killed during the war. She repeated her thoughts for at least the next twenty minutes.
As I mentioned in one of my earlier posts, I felt this was a time for comfort as opposed to words. I listened and held her hand and supported her feelings. That continued until the end of the musical. We went to bed shortly afterward.
This experience makes me think about many of the movies we have enjoyed over the past several years. I don’t believe she has been able to follow a plot or understand much of what is going on for at least four or five years; however, that hasn’t prevented her from enjoying movies. For a long time, I wondered how that can be. Then I began to understand that the characters and situations must have communicated some emotional message that she liked. That was illustrated most vividly in several of the movies she has enjoyed during the past year. One was Darkest Hour. In that case, she did understand that it dealt with Churchill and WWII. She was able to connect with the seriousness of the events portrayed as well as the drama conveyed by the acting, visuals, and sound. The other two were documentaries, RBG and Won’t You Be My Neighbor? Even without following the story, she was able to get a feeling for both Justice Ginsberg and Mr. Rogers. She easily understood that the films conveyed positive impressions of each one and liked them.
One of the things I have learned since Kate’s diagnosis is that most people think of the last stages when they hear of someone with Alzheimer’s. They don’t imagine that stage is just the tip of the iceberg. We’ll be there sooner than I would like. In the meantime, I will continue to celebrate the fact that there are so many things that she can enjoy. Her intuitive abilities are still working even as her rational ones disappear.
