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.

A Short Day for Kate

Yesterday Kate was tired and didn’t want to get up. At 10:30, I asked her if she would like me to take her to lunch or let her sleep longer. She opted for sleep. I decided it would be a good chance to let her get accustomed to Mary’s helping her. I kept poking my head in the bedroom thinking that she might wake up before I left. She didn’t. I did bring Mary into the bedroom and told Kate she was here if she needed anything.

After leaving, I began to wonder how long Kate would sleep, but I didn’t call Mary to check.  I decided it was best to leave things up to the two of them. I got home a few minutes before 5:00 and found that they weren’t at home. I knew that meant they were at Panera. My immediate thought was that she had gotten up very late and was eating a late lunch. They were back home a few minutes later. I discovered that I was right. Mary said she had tried to get Kate up a couple of times but didn’t want to force her. She finally got her up at 3:15. It took almost an hour for her to get ready. They got to Panera at 4:15.

I hadn’t eaten a regular lunch. I ate a banana and snacked on some granola before leaving for the Y. I was ready for dinner when I got home. Kate is sometimes ready to eat shortly after eating a meal. I decided it probably wouldn’t bother her if we went directly to get our Friday night pizza. I was right about that. On the way to the restaurant, I asked her about going to Panera with Mary. She told me they had just stayed at home. She ate her half of the pizza just as easily as she usually does.

The next question I had was “Will I have trouble getting her to sleep?” That turned out not to be a problem at all. We got in bed about our usual time, 9:45. I went right to sleep and was unaware that she had any problem. She slept through the night and is still sleeping at I write this blog at 8:50. Will she get up earlier this morning? I don’t know. I have an idea that she may not have slept as much yesterday as it appeared. She was in bed, but lately she has been staying in bed longer after waking up. It makes me wonder if she wakes up but doesn’t know what to do. This is something I will pay more attention to in the days ahead. She may actually need me to get her up.

Reflecting on Kate’s Intuitive Abilities. Part 2: Taste and Touch

By now you are well aware that Kate and I eat out for all our meals except breakfast. Thus, it should not surprise you that the sense of taste has played a relevant part in our lives. I can’t say, however, that it has brought with it the same degree of pleasure as music and our social experiences. Let me try to explain.

Kate and I are not “Foodies.” By that, I mean that we do not passionately explore a diverse variety of foods and ways in which they can be prepared. When we are traveling and when we dine out for special occasions, we may explore unique and tasty menu items. Since we eat out all the time, we don’t go to a lot of upscale restaurants. Most of them are everyday places.

That does not mean that the taste of food is irrelevant to us. On the contrary, we have found ourselves gravitating to food that we enjoy the most. For several years, I have ordered Kate’s meals for us. I do that based on the things that I know she likes, not necessarily what I think is best from a dietary standpoint. In other words, her taste in food and beverages does matter.

She has always liked Dr. Pepper (DP). It is not available at all the restaurants we frequent. When it is, that is what I have usually gotten for her. Her sense of taste, however, is something that has been changing. She no longer distinguishes the taste of different beverages as clearly as she used to. When she gets a DP, she frequently tells me “Something’s wrong with this.” Within the past year, I noticed that she was selecting a little of each of the beverages in the vending machine at Panera. She was no longer going straight to DP. The fact that she has gained weight has led me to order more iced tea half sweet and half unsweet. She has been happy with that. I still keep DP at home in the small cans but notice that she often doesn’t finish what she pours.

Apart from that, I choose specific food items that she likes. When we are eating a full meal, I often order salmon or scallops for her. She likes both. She also likes sweet potato fries. I order those when they are on the menu. In the sandwich line, she likes mostly turkey. One of the other changes in her taste has involved bacon. She doesn’t like the crispiness of bacon. I now ask that bacon be omitted from any sandwich that has them. Similarly, she doesn’t usually eat lettuce, so I omit that as well. I never get her a salad. The idea of a salad turns her off. That’s ironic because she used to make great salads.

Through experimentation we have settled into a array of items she likes at every restaurant we visit. She especially likes her Italian and Mexican meals, and she loves to add lots of Parmesan cheese to her pasta.

Both of us have always loved desserts. When we first married, we had dessert with every evening meal. Over the years, desserts became more of a treat for special occasions. Now we eat more desserts, about five times a week. That specifically relates to Kate’s desire for them. Don’t get me wrong. I love them just as much as she does; however, I am more prone to monitor what I eat than she is. My first reaction was to discourage eating more desserts. I had a second thought. Dessert is something we both enjoy, and I don’t want to look back and regret that I hadn’t taken advantage of the opportunity share that pleasure.

Speaking of desserts makes me think of the blueberry muffin she gets at Panera. That is something she has really enjoyed; however, now that she sleeps later in the morning, we don’t get there as often. When we do, it is in the afternoon. Then we usually just get something to drink.

Kate doesn’t demand a great deal with respect to her meals. She is getting what she wants. When you couple that with the other benefits of eating out, she is getting along well.

When I began to think of the role of touch in our lives, I initially thought of it as less important than the other senses. After thinking a little more, I’d have to say that it has played a significant complementary role in our overall relationship. Often that comes with routine expressions of affection. I believe we hug more than we did before Alzheimer’s. I know there are times when words don’t seem to be the right answer to a problem. When Kate has had a panic or anxiety attack, I have responded with a warm hug when I wasn’t sure what to say. There are times when we are in the car, usually on the way out of town, that she may reach across and simply touch my arm, hand, or leg. More often that that, she wakes up in the middle of the night, moves closer to me, and puts a hand on my arm. It’s just another way of saying “I love you,” but it’s an important one.

That leaves only the sense of smell. I’m not sure what to say about that except that it is something that I don’t see as having played a significant role in how well we get along with Alzheimer’s. Perhaps this is something I should pay more attention to in the future. Each of other senses, however, has been very important to us, and I expect them to last a good bit longer.

An Unusual Expression of Frustration

Last night was opera night at Casa Bella. We sat at our usual table with the couple who used to operate the restaurant before their daughter and her husband took over. A new couple joined us. We were seated with the three women on one side of table each one across from her husband. Kate and I were in the middle. The conversation was going on in several directions. At one point, Kate got my attention and asked me to tell her where we live. The woman to her right had asked her, and Kate didn’t know the answer. I said, “Knoxville,” but she wanted to know the part of Knoxville. I told her. The conversation continued. Then Kate wanted to know where she is from, that is, her original home. At that time, the person to her right was talking diagonally across the table to the person on my right. I looked at Kate and asked her to wait just a minute in order not to interrupt them. Kate was frustrated. When she wants something, she wants it right then. In a loud voice she said, “Richard, where am I from?” It wasn’t loud enough to be heard around the room where the rest of the crowd was involved in their own conversations; however, it was obvious to each of us seated at our table. I told her Fort Worth. Since the man to my left had a friend in Fort Worth, that opened another conversation. We went on without showing any sign of Kate’s outburst. It would have been a good time for one of the cards I am having printed just for this purpose. They will arrive sometime next week. That’s good. We could be reaching the time where they might come in handy.

Addendum for Previous Post

In my previous post I neglected to mention something else that illustrates Kate’s appreciation of things she sees as beautiful. At dinner last night our server brought out a dish with a small cup of Parmesan cheese and another of hot peppers. Underneath them was a paper doily that looked like something my grandmother used to crochet with an outer band of lace. On at least two other occasions, Kate has brought them home. Last night she did so again. She held it in her hand very carefully, trying not to damage it in anyway. Before getting out of the car, she asked me to take it. She said that I was likely to be more careful with it than she. I thought this was interesting in two ways. First, it expressed how much she liked something so simple. Second, she sensed a difference in the way each of us handles our things. She didn’t want it messed up. She trusted my OCD tendencies to protect it.

It also reminds me of how kind she can be in her evaluations. There are many simple things that she appreciates that she might not have before her Alzheimer’s. She is very generous in her own critiques of theatrical and musical performances. She is the same with her attribution of skills of the people she meets. I notice this a lot when I do something simple and very ordinary. She will say something like “You’re so smart.” She does the same thing with many of the people we encounter daily. I think this is a natural outgrowth of her own loss of rational abilities. She still retains an appreciation of such skills and is impressed with the people who still have them.

Seeing beauty in things we take for granted and special skills that we would also overlook gives her more things in life to enjoy than the average person. That’s something else that the longevity of intuitive skills provides to make life enjoyable. How grateful I am for that. That has made living with Alzheimer’s easier for both of us.