My Attempts to Control Kate’s Mood

Kate’s senses are in overdrive. I often mention this in connection with her appreciation of the beauty of trees and flowers and her enjoyment of music, but it occurs in less positive ways as well. At this late stage, she is sensitive to every situation she experiences. What happens determines how she feels. You might ask if that isn’t true for all of us. It is, but there is a difference. We don’t generally notice these emotional shifts among the people we are around. That’s because adults learn to act as though everything is all right even when it isn’t. Children and people with dementia don’t hide their feelings as well when things don’t go the way they like. Kate is certainly that way. Some people describe this as losing one’s “filter.”

I’m never sure how she will feel when I wake her in the morning. Most of the time she is in a good mood, but groggy. Other times she is confused. Sometimes she seems annoyed that I am there. There is no way I can know exactly what causes these differences. At times I feel like she has been awake and thinking about something that affects her mood though I don’t have any good basis for believing that.

Whatever the cause, I know that she awoke on her own yesterday, and she was happy. It was also earlier usual which enabled us to make a trip to Panera for her muffin. We were there almost an hour and a half before leaving for lunch. We relaxed at home after lunch. She rested on the sofa across from my chair in the family room. I played some music that we both enjoyed. An hour later, I took her to get her hair done.

It was following her hair appointment that her mood changed. She worked on her iPad while I worked on my laptop. I had to help her several times. In a little while, I noticed that she wasn’t working on her iPad. She was just sitting in her chair with her head propped against her hand. She looked very discouraged. I assumed she had run into further trouble working her puzzles and didn’t want to ask for my help again. I walked over to her and asked if I could help her. She shrugged.

I kneeled down beside the chair and quickly discovered she was confused. She didn’t know who I was. I suggested we look at one of her photo books and picked up the “Big Sister” album. She recognized the picture and knew that it was a picture of her and her brother. We turned to the first few pages. She recognized the first picture of her mother but not her father nor herself as a baby. She was not as immediately engaged by the photos as usual and asked, “Who are you?” I gave her my name and told her I was her husband. She didn’t believe me. I flipped over to the pages that include some of our wedding photos. She had trouble recognizing herself, her family, and me.

It was nearing time for us to get ready to leave for Broadway night at Casa Bella. I decided to take another approach. I walked her to the hallway where we have several pictures of her parents and grandparents. She enjoyed seeing the pictures, especially one of her mother that was probably taken when she was in her late teens. The emotion for her mother is always more intense than for other family members.

When we were ready to leave and just about to walk out the door, I said, “You look like you are still not too sure about me?” She indicated she wasn’t. I said, “That’s all right. I think you will feel more comfortable after a while.” She said, “I hope so.” Before pulling out of the garage, I started an album of Broadway show tunes that is a favorite of hers. We didn’t talk for a while. We just listened to the music. As “Some Enchanted Evening” played, she put her hand on my leg. That was a positive sign. Then “Shall We Dance?” started to play, I said, “Here is one of your favorites.” After each “Shall we dance” line she clapped her hands against her thighs. That was another sign of a change in her mood. I never asked if she knew me, but she was fine when we arrived at Casa Bella. Music had worked for us once again. Now the question was “How will the evening go?”

It was an evening of mixed experiences. As we walked along the side walk to the restaurant we met the couple we always sit with. They are always so kind to Kate. We greeted them and walked into the restaurant. We were off to a good start. Another couple was already seated at our table for eight. One of them was seated across from Kate, so I took the seat next to her. Very soon the conversation became difficult for Kate to follow. She asked people to explain or repeat several times but quickly withdrew. We had almost a full hour before the music began. Kate was uncomfortable. Several times she asked me, “Does this place have food?” I told her we had ordered, and it would be out soon. It wasn’t long before she whispered, “I want to get out of here.” I explained that the music would soon begin and that I thought she would enjoy it. I was right about that. The program featured the music of  Rodgers and Hammerstein, and the singers were outstanding. From a musical standpoint, the evening was a clear success. On the other hand, I am going to do some serious thinking about the future of these music nights. I don’t intend to make any immediate changes, but I may have to look into finding a table for two.

The evening ended well. Kate never showed any sign of being uncomfortable with me when we left. I think she was very glad that it was just the two of us.

More Unusual Things

Kate continues to make changes that I see as signs of the progression of her Alzheimer’s. One of those has been that she has paid less attention to her iPad and more attention to her photo books in the past couple of days. The good thing about that is that it provides her with two different activities instead of just one.

We often think of the memory problems of people with dementia as forgetting the names of people, places, and things. It also involves procedures or steps to accomplish a task. Kate is having more problems with these kinds of things. For example, she has started asking me what to do with her napkin when we go to a restaurant. Last night I told her to put it in her lap. She didn’t understand and asked me to show her. I got up and placed the napkin in her lap. Similarly, she is has trouble knowing where to put the flatware. When she brushes her teeth, she sometimes forgets to put toothpaste on her brush. I have started doing that for her. She is dependent on me for help with a host of other things like that.

We had an unusual experience around 1:30 this morning when she was disturbed by the way her nightgown had crept up. She tried unsuccessfully to straighten it out. Then she wanted me to help her. I had trouble because she couldn’t understand when I asked her to roll over so that I could pull it down. At one point, she said it was all right. The next moment she complained again. We went through the same routine a couple of times. I got out of bed and went around to her side. I suggested she stand up to make sure we had it pulled down all the way. She couldn’t understand what I wanted. I did the best I could and didn’t see any sign there were any annoying wrinkles in the back of her gown. She was finally calm and said, “What now?” I told her we could go back to sleep, and we did.

An hour later, she said, “Where am I?” I told her. Then neither of us said anything else. She was pulling her hair as she does so often when she goes to bed. I don’t know how long she was awake. I do know that she spoke to me an hour after that. I don’t remember what she said.

I wish I knew exactly what she is thinking. My impression is that her brain is trying to process a lot of things that she can’t understand. Everything must seem terribly confusing.

My Experiment with Another Movie

For most of our marriage, especially before having children and after they left home, Kate and I have enjoyed movies. It was natural to include them among the variety of priorities on which we focused after her diagnosis. We found the best selection of movies at a local arts theater and have been members for many years. As Kate’s Alzheimer’s progressed, she was no longer able to follow a plot. At first, I thought that might be the end of movies for us. I discovered, however, that she could still enjoy some of them without understanding the plot at all. I was surprised but soon recognized what is obvious that there is more to a movie than a plot. Movies grab their audiences with a host of emotions that we experience directly by our senses of sight and hearing. We can enjoy the appeal of the characters, the beauty of the scenery, visible forms of humor, and music.

For Kate, enjoyment was heavily influenced by the nature of the characters and the seriousness or importance of the film’s focus. She liked upbeat movies with likeable characters. On the other hand, she liked more serious films like Darkest Hour. In that case, she was able to recognize the seriousness of war and its impact on the world. At the time, she also recognized the importance of Churchill. The whole tone of the movie appealed to her.

The last two movies that appealed to her were documentaries, RBG and Won’t You Be My Neighbor. We saw RBG twice and Neighbor four times. She had a strong positive feeling for each of them even though she didn’t remember them before the movies. In addition, she could sense they had led lives that had great impact.

Our moving going had already tapered off before those films. After that, I tried one or two movies without any success. She was confused and bored. I have been looking for what I thought would be the “right” movie since then. That occurred two weeks ago when I learned Pavarotti was playing. Kate has been especially drawn to opera in recent years. I decided to give it a try yesterday afternoon.

While we were at lunch, I told Kate that we would be going to a movie. I told her it was a documentary of Pavarotti. She didn’t remember him even when I told her a little about him. For the most part I was not surprised. She is forgetting most names. Why not Pavarotti’s? On the other hand, he does come up periodically in our conversation, especially in connection with some of the YouTube videos we watch in the evening. We have watched a few of his solo performances as well as those with The Three Tenors. I guess I had hoped that she might recognize the name. If she had, I would have taken that as a sign that she might have an interest in the movie. That didn’t happen.

Once the movie began, I was very optimistic. I could tell she was interested. There were a number of emotional moments during the film when she and I were both moved by the music. She held my hand and squeezed it tightly. She enjoyed his singing, but there were also times when she said, “You’re ‘gonna’ have to help me with this. I don’t understand.” She repeated that when the movie ended. Instead of getting up to leave, I talked with her briefly. I asked if she had liked it. She said, “I don’t know. I didn’t understand it.” I suggested that the important part was that she liked the music. That didn’t make any sense to her either. I found this interesting. I was trying to get her to rely on her intuitive abilities, and she was focusing on her deficit of rational abilities.

All-in-all I have to give Kate’s experience “mixed reviews.” I had hoped that she would leave with a good feeling about having gone, but she didn’t. By the time we reached the car, she didn’t remember seeing the movie. I probably won’t take her to another one. I’ll add this to the growing list of things that we are dropping from our lives.

The Pleasure of Intuitive Thought

I can’t stress enough how much pleasure Kate and I have enjoyed because she has retained her intuitive abilities. They are the ones that depend on her direct experience with the world around her through her senses. She doesn’t have to remember the names of people, places, and things to enjoy beauty, music, and connections with people. I am encouraged by the knowledge that they can continue much longer than we imagine.

When we visited Ellen in her memory care facility the other day, I took notice of the way in which the residents expressed their pleasure with the singing led by Emily, the music lady who visits the facility two Sunday afternoons a month. With the possible exception of Ellen, all of the residents are much further along in their dementia than Kate, but they were delighted by the music. Only one of the ten or so residents took the floor and danced, but one other remained in her seat tapping her feet and her hands with the beat. There were many smiles around the room. It was a moment of pleasure for them and for Kate and me as well. Yes, we sang along with them.

I am glad we don’t have to depend on someone to come in twice a month. We play music all the time. It is a rare moment when music is not playing. We never tire of it. In fact, Kate’s senses seem to be more alive now than ever as her rational abilities fade away. I witnessed a good example of that yesterday afternoon. First, a digression.

Even during the winter when the trees were bare, Kate enjoyed looking at the dense growth of trees in the neighbor’s property behind our house. During spring, she took pleasure in the growth of new leaves. More recently, I put out a variety of potted plants on our patio and two pots of violet colored petunias inside our family room. Every time she walks through the room she stops and looks at all of them. Each time is like the first time she has seen them. She loves to bring my attention to several that are her favorites.

When the sitter left yesterday afternoon, Kate was lying on the sofa facing the sliding glass doors to our patio and the neighbor’s property. Generally, she has wanted to leave the house as soon as the sitter leaves, but she was enjoying looking at the trees. I put on an album by Alfie Boe. It began with “Bring Him Home.” That has always been a favorite of hers. That didn’t stop her enjoyment of the beauty outside. It just added an extra measure of pleasure for her. When the album was over, I played two different renditions of “Send in the Clowns,” another longtime favorite. Thirty minutes passed before I suggested we look at one of her family photo books. She said, “I’d like that, but let’s do that later.” She just wanted to enjoy the beauty of nature and music. I kept looking over to see if she might be falling asleep. What I saw were beautiful expressions of pleasure. Often she was mouthing the words to the songs. Occasionally, she would point out something she wanted me to see.

After dinner last night, I gave her the “Big Sister” album. She spent about an hour looking at it. Even though she doesn’t recognize everyone, she enjoys looking through it and other albums.

I have been increasingly concerned about the difficulty she has working puzzles on her iPad. That has been so important for her for such a long time, but maybe her intuitive abilities will open other doors for pleasure in the days ahead. I hope so.

Sunday in Nashville

We had a nice day in Nashville yesterday. I had made noon reservations for lunch at Maggiano’s near our hotel, but we got there at 11:15 because Kate woke up earlier than I expected. I always like it when she wakes up on her own. That means I don’t have to be concerned about waking her and the challenges that sometimes presents.

We had a good meal and a pleasant time. The last time we were there it was Father’s Day and a little noisy. It was much quieter yesterday and very relaxing.

Before leaving, Kate went to the restroom. I took the opportunity to go to the men’s room rather than waiting outside the ladies room. Moments after I went in, I heard her call me. When I opened the door I saw her looking around for me. She expressed a big sigh of relief when she saw me. I felt bad about not being there as she walked out, but she came out so quickly. She could not have used the toilet. I suspect she got confused and just turned around and came out.

As we left the restaurant, Kate saw a poster with a photo of Frank Sinatra. She stopped to look and naturally asked me who it was. We had been to this restaurant several times before, and neither of us had noticed it. I chuckled because she always asks who he is in posters on the wall at Andriana’s when we are there. She said something to the hostess who told her that Sinatra died some time ago. Kate said, “He did. I didn’t know that.”

Our visit with Ellen went well although understanding her is a big problem. She hadn’t declined since last time, but it is hard to have a good conversation when you can only understand about 10% of what she says. I relied on YouTube videos that she and we enjoyed until Emily, the music lady, arrived to entertain the residents in Ellen’s “neighborhood.”

As we gathered around the piano, one of the staff dropped something that made loud noise at the nurse’s station. Kate is getting increasingly sensitive about surprises, especially sudden noises. She responded audibly that was almost as loud as the noise that frightened her. One of the residents spoke up quickly and told Kate that she had the same problem.

Remembering how Kate had sung, danced, and cheered last month made me eager to see how she would react to the music. She did enjoy the music and sang along rather quietly but was never tempted to do any of the things she did last time. I guess she was just in a different mood. She was more like herself than the previous visit.

Later as we drove to Knoxville, I told Kate we were close and would stop for dinner before going home. She said, “I don’t have any money.” I told her I had money. She said, “I will pay you back when we get home.” When I parked the car at Andriana’s, she again told me that she didn’t have any money. I told her that was all right. It was all “our” money. She said, “I guess that’s right.” She quickly forgot, however. As we walked from the car to the restaurant, she told me she didn’t have any money. I told her I would pay. She said she would pay me back. One other time she mentioned it while eating. This was something unusual. I don’t ever recall her saying this before.  Of course, it fits if she thought I was a friend instead of her husband. It would still be the first time she has raised a question of her paying for anything when we are together. On quite a few occasions, she has been concerned about not having money when I leave her with a sitter. In those cases, I have always told her that I left money or a card with the sitter.

While we were waiting for our meal, she asked our server if she knew her name. The server said, Yes, it’s Kate.” Then Kate asked the server’s name. This was shortly after the server had introduced herself since she sensed that Kate had not recognized her. The server said something about “your husband,” and Kate said, “We’re friends.” I said, “Very good friends.” Kate said, “Yes.” All of our servers know about Kate’s Alzheimer’s, but this particular server has had the opportunity to observe her memory problems more than any other. I don’t think it’s because Kate is more comfortable with her. I believe it is just a chance occurrence.

I mentioned earlier that Kate had taken interest in a poster of Frank Sinatra when we had lunch at Maggiano’s. At dinner, she may have set a record for the number of times she said, “Who is that?” while looking at a poster of him at Andriana’s. I didn’t count, but I am sure it was well over ten times, some in rapid succession.

When we got home, she started going through two of the guest rooms. She acted as though we were moving, and she needed to decide what to take with us. She went into a guest room and picked up a couple of things. I suggested we relax a while and that she could work on that tomorrow. She agreed.

When we got to the bedroom, she asked what she should do. I told her she could start by taking the pills I had put on her bedside table. It looked like she was going to do it but started to undress for bed. It seemed like she was just randomly selecting what to do although she was asking me to tell her. She didn’t seem to follow any of my instructions after asking for them.

While I was brushing my teeth, she called to me and said, “Where is he?” I asked who she was talking about. She said, “You know.” I told her I really didn’t and that she and I were the only ones in the house. She was puzzled but didn’t pursue it further.

She went to bed almost an hour before I did. When I got in bed, she was still awake. We talked about having had a nice day and that we have many nice days. That led to a comment or two about our marriage. Then she said, “We are able to talk to each other. We’re able to be really honest with each other.” Then she suggested something I never fully understood. She talked about how our relationship could grow even further by talking with other people about it. I said, “Do you mean a counselor?” She said, “That could be, but I was just thinking about people we know.” At first, it sounded to me as though she thought we had a problem we needed to work through. The more the more she talked the more it sounded like just improving on the relationship we already have. I don’t know how long she talked, but she sounded very thoughtful as she considered the benefits of exploring ways of enhancing our relationship.

This conversation and a couple of others we have had recently has impressed me with her rational ability to think through something like this. Sometimes she says that I underestimate how smart she is. She may be right.

During the Night

Although Kate generally sleeps well at night, she was awake for a couple of nights this past week. Night before last, I had gotten up about 1:00 to go to the bathroom. When I got back in bed, she said, “Who are you?” She didn’t sound frightened or upset. She merely wanted to know. I gave her my name and told her I was her husband. Then she asked her name. At first, I thought this might be one of those times she was anxious about not knowing where she was or who she was with, but it wasn’t that at all. She was quite calm.

This made me think about something I have thought about before but not mentioned in my blog. During the night, I am very careful not to put my arm around her while she is sleeping. Since I know that she is often confused when she wakes up, I have been afraid that she might be frightened if I did so. On the other hand, she isn’t always, or even usually, confused upon waking. In fact, she frequently moves right next to me during the night and puts her arm around me. Her intuitive ability apparently leads her to respond to me as naturally as she has before her Alzheimer’s.

During the night at our hotel on Saturday, something else occurred. I heard her say something and asked if I could help her. She said she I could and tried to explain what it was she needed. She was very concerned about whatever it was, but she couldn’t explain it to me. I was only able to determine that it involved a mutual friend of ours and that she needed to make a list. At first, she just referred to “him.” When I asked who that was, she gave her usual answer, “You know.” I feel sure she does this because she can’t remember. I mentioned several names but was never sure who she was talking about. Ultimately, we both drifted off to sleep. I’ll never know what she was talking about, but it was of great concern to her. It reminded me of several other times when she has had a dream and thought she needed to be someplace and was worried about being late.

Another Overnight Trip

These days it is quite unusual for us to travel two weekends in a row, but that is what we have done. We are currently in a hotel in Nashville where we visited yesterday afternoon with a longtime TCU friend and former housemate of mine. It had been a while since we saw him last, but we have communicated by phone, text, and email. He met us at the hotel.

It was a good visit. Of course, Kate couldn’t remember him, but when I told her he was a friend from TCU, her eyes lit up. She participated in the conversation and enjoyed herself as she has done on several other out-of-town visits with people she had never met or not remembered. Although she needs to ask people to repeat and explain themselves, I take it as a good sign that she is interested. Yesterday’s experience reinforces my belief that she is heavily influenced by the situations in which she encounters people. She does better in small groups, only one or two others besides us, and in situations where there are minimal distractions. Large groups like those at a reception are intimidating for her. Our music nights at Casa Bella are typically an exception, but that is because we are often at a table with only one other couple. It was very quiet in the hotel yesterday afternoon. That was great for conversation.

Travel is no longer something special for Kate. After checking into our room, she was ready to go home. She does still enjoy specific experiences while we were away. For example, she loves the flowers around the hotel. As we walked to and from dinner, she stopped multiple times to admire their beauty. When we got back after dinner, she mentioned going home. When I told her we were staying overnight, she frowned.

What she doesn’t realize is that I have only chosen to stay overnight so that she can sleep late on the day we leave and the next morning before we visit Ellen. It makes the trip much more leisurely and enables us to have a nice dinner out as well. I’m trying to make a special occasion out of it, but it is working better for me than for her.

We will go to lunch after checking out and then visit Kate’s friend Ellen at her memory care facility. Last time we visited, we joined the residents in a music program that Kate enjoyed. The woman in charge said she is coming periodically on Sundays. I hope she is there today.

Update on In-Home Care

Sometime during the past year, I mentioned my having to get up with Kate during the night. At that time, I was speculating (as I often do) about the future and whether I would feel my greatest need for in-home care would be at night rather than during the day. Fortunately, she hasn’t gotten up at night since then. I wish I could say the same for myself. At the moment, I plan to continue the same schedule of in-home care that I currently have had since starting a year and nine months ago. That involves two different sitters. One comes on Mondays so that I can go to Rotary, the Y, an occasional meeting, and run errands. The other comes on Wednesdays and Fridays. Those are also days for the Y. In addition, I use them to meet friends, run errands, and occasionally take my laptop and/or iPad to Starbucks or Whole Foods to check email or work on my blog.

This schedule has worked out well for me. I still don’t feel the need to add any additional time, but that may be coming. I have just accepted membership on another United Way committee. That makes two. I have also been asked to participate on a panel at a conference sponsored by a chapter of the Alzheimer’s Association in Nashville the last of August. In that case, I will take Kate along with me. The conference sponsors are going to provide someone to help with Kate at lunch and during the panel session. I may explore other such opportunities locally. Unless engagements like that occur during a time I currently have a sitter, I will need to arrange for someone to be with Kate.

I feel good knowing that our long-term care insurance cover 8 hours a day. (I originally thought it was 12.) I am a long way from needing that amount of time, but as Kate declines I realize that could change any time. I feel a sense of security knowing that my commitment to move to a local continuing care retirement community in a year and a half opens other options for me. We are now considered members of the community and can eat there (at our own cost), use the exercise facilities, and attend events. It also includes access to their adult day care program, assisted living, skilled nursing, and memory care should we need them.

So at the moment, I feel I am well-covered with respect for Kate’s care. That’s a good feeling.

A Good Evening at Casa Bella

Jazz night at Casa Bella last month did not go as well for Kate as it usually does. Two differences accounted for that. The first was the way we were seated. I sat diagonally across from Kate instead of directly across from her. That meant she would forget where I was and was a bit insecure. It also made it more difficult for her to participate in the conversation as no one sat beside her until I took that seat a little later. The second was the music itself. Most jazz nights include an abundance of old ballads that everyone our age easily recognizes. A new group of musicians performed, and their selections tilted toward less vocal and more contemporary jazz. It was not something that Kate enjoyed. I understood that at the time. Nonetheless, I couldn’t help being concerned about future evenings and what they might be like.

I am glad to report that we had a good time last night. I made sure that I sat across from Kate so that it would have been hard for her to miss me. We sat with the couple whose company we have enjoyed for the past five to six years. Late in the evening, the couple’s daughter and her husband joined us. We have also known them for many years. The musicians were the same group as last month, but they played a lot of old ballads familiar to the audience. The crowd was made up largely of seniors, mostly 65 and older. It was a very receptive audience. Of course, my only concern was Kate, and she enjoyed the evening as well. That is what matters most.

On a few occasions, I have said something about Kate’s eating habits. Though she does use her fork most of the time, she also picks up her food with her hands. I was especially mindful of that last night. We split a mahi piccata with linguini. She had finished most of her meal when I noticed that she was picking up the last bit of linguini and the capers with her hand. I don’t know whether anyone else at the table saw her, but it is the kind of thing that will be noticed sometime. It makes me wonder if we will reach a stage when I think it best not to be at a table with others. So far, it hasn’t been a problem. Even if our friends notice, they are very understanding.

Day before yesterday at lunch, we had a similar experience. She eats most sandwiches by taking them apart, separating the meat, lettuce, tomatoes, etc. Then she usually picks up the various pieces in her hand. That day she had a hamburger. I cut it into four quarters to make it easier for her to handle, but she took everything apart anyway. To me it looks a bit like a child’s plate with all the pieces of her hamburger strewn about, but there is something about sorting through the items that she likes. It could be that she is looking for things she might not like, perhaps onions, although I am very careful to omit onions from anything I order for her.

Kate’s Dependence on Me

As Kate has moves from one stage of her Alzheimer’s to another, there is never a clean break in her behavior. It is always a gradual process in which she gradually begins to stop doing things she did before or starts doing things that she didn’t do before. I do, however, have moments when I recognize that the change has become a fundamental shift from the way the was before to a new state. That is the way I feel about her present state of dependence on me.

She continues to assert her independence at times when I help her with daily activities like getting out of bed, helping her dress, holding her hand as she goes up or down stairs, and a host of other little things. The difference now is that they often take me by surprise because they are so much less frequent than in the past. The present norm is that I assist her with almost everything. Yesterday was a good example.

It was Wednesday, another afternoon for the sitter. I always feel under more pressure on those days because I want to let Kate sleep as long as I can but also give her as much time as possible so that we can get to lunch and return home in time to meet the sitter. Generally, she needs about forty-five minutes to an hour to get ready if she doesn’t take a shower. As I reported previously, she didn’t get up at all before I left on Monday. That has occurred only two or three times in the past, but it is hard for me to be sure when to wake her.

Yesterday, I wanted to leave for lunch about 11:30. With that in mind, I started playing some soft music about 10:30. At 10:45, I went in to wake her. I found she was awake but still resting happily. I could tell by the smile on her face that she was in a good mood. I sat down on the bed, and we chatted a few minutes. I told her I would like to take her to lunch and asked if she would like that. She smiled and said she did, but she was still very relaxed though I wouldn’t say groggy or confused. I changed the music to the musical Annie. She likes that, and it’s very upbeat and cheerful. I left to get her clothes.

When I returned, she hadn’t moved. I told her gently it was time to get up and she extended her hand for me to help her sit up. Then she said, “What now?” (She often needs me to tell her step-by-step what to do.) I suggested she go to the bathroom and that I would show her where it was. I helped her out of bed and led her there. She wasn’t sure what to do when she reached the door. I pointed to the toilet and said, “Toilet first.” When she was finished, she said, “What now?” I told her to wash her hands and brush her teeth. She has forgotten that she has a soap dispenser and how to use it. I asked her to put her hand under the nozzle. She didn’t understand. I showed her with my hand. She still didn’t understand. I took her hand and held it, gave her some soap, and told her to put her hands under the faucet and rub them together. She is also forgetting about using her toothbrush. Sometimes she just puts toothpaste on her finger and rubs in on her teeth. I picked up her toothbrush, put toothpaste on it, ran in under the faucet and gave it to her. I won’t go through the routine for dressing, but it is very similar. I guide and help her step by step. The only time she made any effort to assert her independence was while she was dressing, and that was minimal.

Her dependence is also expressed in her feelings about me. She needs me. When I returned home in the afternoon, she was lying awake on the sofa. Mary was seated in a chair across from her. When she saw me, she smiled and started to sit up. She said, “You’re one of my favorite people.” I went over and helped her to her feet. Mary said goodbye and turned to leave. Kate called to her and asked her to wait a minute. Mary turned around, and Kate put her hand on my shoulder and said, “He’s a nice man. A really nice man.” I don’t know if she recognized me as her husband at that moment, but she does sense that I am important to her. This goes along with her other comments about feeling “safe” with me.

As soon as Mary left, she wanted to know what we were going to do. I told her we would go to dinner. Before leaving, she looked at several family photos on top of our entertainment center. I walked over and looked along with her. Then she said, “Will you take me home?” She continues to think we are in someone else’s home. It isn’t constant. We talk about our home and things she likes, but she moves back and forth between knowing it’s our home and thinking it’s not. It is a challenge for me to know exactly what to say at any given moment. Sometimes I play along. Sometimes I don’t. For example, she was disappointed when we got home from dinner. She had wanted to go “home.” In that case, I told it was our home, and I would show her some of the things she likes about it. She didn’t say anything, but she didn’t mention any dissatisfaction once she was inside.

Another sign of her dependence is how much she needs my help staying occupied. That is something that has a greater impact on my personal time. Last night is another good example. Our general after dinner routine is for me to watch the evening news while she works on her iPad. As I have noted previously, it is getting harder to her to work her puzzles. She needs my help. Last night and several other nights recently, I have gone back and forth between my chair and hers to help her. That makes it a challenge to watch the news. After doing that several times last night, she put her iPad down and sat there looking somewhat frustrated. I suggested that we look at one of her photo books. We sat on the sofa and went through most of the “Big Sister” album. She was interested, but it was unusually difficult for her to recognize or remember “key players” – her, her brother, her mother, and her father. Even in photos that were side by side, she found it difficult to identify her brother and her father. She did better recognizing herself and her mother, but far from consistently. I tried to explain that the book focused on her and her brother and that if she just guessed who the boy was in a picture, she would be right if she said her brother. She could never have grasped that. As a consequence, I had to identify the people in almost every picture. Before we finished, I went to take my shower while she continued going through the album. She still seems to derive pleasure from looking at the pictures even though she doesn’t know who the people are. I am grateful for that but can’t help wondering how long it will last. I have always made an effort to go through the albums with her. It is something we both enjoy, but it is also nice for her to be able to enjoy them by herself.

My feeling about Kate’s increasing dependence is much the same as it has always been. Some of it makes caring for her easier, but it comes at a price. I would like her to be as independent as she can for as long as she can. She likes to be independent. I think that is true for most of us. It is sad to see her having to depend on me so heavily.