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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.

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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.

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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.

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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.

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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.

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Day 2 of our Trip to Nashville

Yesterday’s visit with the Greeleys turned out well though Kate had a rough start first thing in the morning. Morning confusion is becoming more common now. That is especially understandable when she wakes up in a strange place.

As usual, I had gotten up a good while before she awoke about 8:30. She said, “Hey.” I walked over to the bed, and she said, “Who are you?” I asked if I looked familiar to her. She said I did. I gave her my name and told her I am her husband. She said, “Who am I?” When I told her, she wanted to know where she was and then why we were there. I explained about our coming to Nashville to see the Jan and Scott. She said, “Who?” I gave her the background to our friendship and specifically that she and Scott had been friends her entire life. Nothing rang a bell. I didn’t say anything about our having been with them the previous afternoon or having dinner with them. I relied on something I frequently tell her when we are at home. “It’s early in the morning. Sometimes you are confused when you wake up, especially when you are in a strange place. Once you are up you’ll feel better.” Then I told her it was still early and asked if she would like to get up or rest a little longer. She wanted to rest. I told her I would be just across the room at the desk and that I wouldn’t leave her. She said, “Good.” She woke up again two hours later. As she did earlier, she asked where she was and then why we were there. I went through the same explanation as I had done previously.

We checked out of our room in time to meet the Greeleys at our hotel for lunch. I didn’t want Kate to have to walk to the car and back, so I kept our suitcase and computer case with us until they arrived. I made a mistake when Jan and Scott walked in. I should have said, “Look Kate, it’s Jan and Scott Greeley.” Instead I greeted them as I always have. That would have worked in the past, but this time Kate needed me to remind her of their names and that we were having lunch together. Of course, I had told Jan before they arrived, but she had forgotten. When I realized, I called them by name, and Jan gave her name. Then I suggested that I take our things to the car and for the group to wait a moment. That is when Kate got up and said, “I’ll go with him.” That prompted Scott to say, “You don’t have that much. Why don’t we just take them with us to our table.” That worked well.

The lunch also went well. It was a buffet, and Kate and Scott remained at the table while Jan and I got our food. I also brought Kate’s to her. Even though it was not crowded, it was much easier than her doing it herself. Kate accepts this very naturally. This was not one of those times for independence.

As happens so often now, Kate asked that we repeat ourselves a number of times. This is commonplace. It is difficult for her to follow conversations. Even when we are alone, she asks me to speak more slowly. Apart from that and the insecurity she showed when I was about to leave her to put our things in the car, she enjoyed herself as did the rest of us.

Prior to the trip, Scott and I had exchanged emails in which he and I mentioned continuing care retirement communities. He told me that they were looking at one, and I told him about the commitment I had made to one in Knoxville. After lunch, I asked if he and Jan could drive us by the CCRC he had mentioned in his message. I might have expected that it would mean little to Kate, but it turned out to be a good thing. We not only drove around the campus, but we went into the main building. Kate loved the beauty of the place and took special note of the flowers both inside and outside. As I reflect on it, this was the kind of experience in which she can enjoy herself in the company of others without any pressure at all. She was free to walk around on her own and take in things without our pointing them out. It took away all the pressure that conversation represents for her. It may seem strange, but it reminds me of trips to the zoo. She enjoys looking around at things of beauty or special interest to her.

When we left for home, she mentioned how much she had enjoyed the Greeleys. She always has. I knew she would this time. It just took a little longer to feel at ease. I take that as another sign of the progression of her Alzheimer’s.

After dinner last night, we spent some time in the family room looking at the “Big Sister” album that Kate’s brother Ken had made for her a year ago. That has become far more important to her than he could ever imagine. She is enthralled by the cover picture of the two of them. She spends more time with that particular photo book more than any of the others. Last night, she went through it twice with me. I left to take a shower, and she started on it a third time. After my shower, she was still looking at it. I told her it was getting time for us to get ready for bed. She asked if she could take it with her. She held it in her arms and said, “I love it.” She was tired, however, and didn’t look at it again. She got ready and got in bed. She had had a full day and, except for her confusion in the morning, enjoyed every minute.

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A Good Day, But Not Without Confusion

At 7:45 yesterday morning, I heard Kate make a sound and went to the bedroom. She was awake and smiled at me when I entered the room. I sat down on the bed beside her. She was wide awake, not at all groggy. She was also in a cheerful mood. It was a great way to begin the day.

I assumed that she just wanted to get up to go to the bathroom, but I soon discovered that she was ready to start the day. As I helped her dress, she wanted to do as much as she could and said, “I’m smart you know.” That began a conversation in which she said that women are as smart as men. She questioned whether I believed that. I told her I did. She said, “Good. You gave the right answer.” She said, “Someday women are going to be doing the same things as men.” I told her there were already changes being made. I told her about the enrollment numbers of women in college and in several different fields like medicine, law, and business. She was surprised and pleased. This was not the first time she has brought up the topic of the roles of men and women and specifically the discrimination women have faced. It comes up periodically.

We got ready leisurely and arrived at Panera at 9:00. As we walked in, we stopped to talk with several friends who regularly come for coffee and conversation after morning mass. Because we don’t get to Panera very often, it was especially nice to visit with them. Kate was unusually chatty and funny. One of the men said something about himself. A woman seated a couple of seats from him quickly contradicted him. Kate said, “You must be his wife.” Then he said something to which Kate had a funny comeback. I wish I could remember what it was. It was the kind of thing you might expect from someone who jokes frequently. It was clever and so quick. We all laughed. It was especially funny coming from Kate since it was something unexpected. She didn’t sound at all like someone with dementia.

After an hour, she was ready for home. That didn’t surprise me. She had missed at least two hours of her normal sleep by getting up so early. I also expected she would rest when we returned home. That proved to be correct.

It was a day for the sitter and my day for the Y and to have coffee with my friend, Mark Harrington. We arrived home from lunch a few minutes before Mary arrived. She came in and greeted Kate while I brushed my teeth and got myself ready to leave.  When I told Kate I was leaving, she said, “You’re leaving?” This is now a common question, but she doesn’t seem as concerned as she often does. I told her I would be back. I left with a good feeling.

Upon my return home, Mary was seated in the family room. I usually expect to see Kate resting on the sofa, but she wasn’t in the room at all. Mary called to Kate to let her know I was home. She was in the back of the house. I assumed she had been resting in one of the other bedrooms, but Mary said that she had been up a while and had been walking through all the rooms in the house. She told me that she had also gone outside on the patio. Then Kate walked into the room and said, “Isn’t this a great room?” I recognized right away what was going on. For well over a year she has often thought our house belongs to somebody else and that we have been staying here. For most of the past two or three days, however, that sense has been almost constant. Her going from room to room yesterday reminded me of the one-hour “tour” she and I took of the house about a year ago when she didn’t recognize it as our home. We went to dinner right after Mary left. As we pulled out of the garage, Kate said, “Is this the first time you’ve been to my school?”

She did a little better on her iPad last night but still had problems. She didn’t get into the store as much because she asked for my help before hitting the button that takes her there. Although I spent as much time helping her, I felt better because she didn’t experience the frustration that she had the previous night. I am better able to take the demands on me to help her than I am to see her discouraged.

It was also a day when I felt she recognized me as her husband. I could be wrong. I never asked, but she never said anything to make me think she didn’t. On the way to lunch, she said, “I like you. I like being with you. I even love you.” She called me by name once in the afternoon. She also expressed her appreciation to me for being patient with her. This reminds me of something she said at lunch the other day. She had torn a paper napkin into three pieces and placed her glass of tea on one, her knife and fork on another, and her bread plate on the third. I said, “It looks like you’re all ready for your meal.” She said, “Thank you for being so understanding of all the funny little things I do.” I wonder, “Does she recognize these things really are unusual?” I would love to know all that is going on in her brain.

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Confusion and Frustration

Yesterday was unusual in that the day began without a lot of apparent confusion. I mean that she was happy from the start and didn’t ask my name or hers or where we were the entire day. On the other hand, she experienced a good bit of confusion and frustration late in the day.

As often happens, she asked what she could do when we got home from lunch. I gave her the usual options of working on her iPad or looking at her photo books. She chose the iPad and walked over to the sofa. She asked if she could lie down. I told her that would be fine. Then she wanted to know if she could take off her shoes. Again, I told her that was fine.

This was about 2:00. She spent a little over two hours resting. I believe she was awake most of the time. At least once, it looked like she was asleep. Shortly after 4:00, she looked over at me. I asked if she would like to go out for ice cream. I was sure she would say yes, but she said no. She wanted to continue resting.

After another ten minutes, I asked if she would like for us to look through one of her photo books together. She liked that, and we spent the next forty-five minutes looking at the album of her mother’s family. This time was different. She was really working to remember who each person was as well as all the accompanying information as if she were preparing for a test. Since she was unable to remember any of these things for even a few seconds, she kept asking me to repeat what I had just told her. We spent a good ten minutes just trying to learn the names of the four members of her mother’s family whose picture was on the cover. I think we only got to move forward because I flipped to the opening page, and she focused on it. Despite the trouble she was having, we went through the entire book before I suggested we go to dinner.

After dinner, she usually wants to remain in the family room for an hour or so before going to our bedroom. Not so last night. She wanted to go directly to the bedroom where she began to work on her iPad.

She quickly ran into problems. Usually the most common problem is her getting into the store when she wants to get a new puzzle. She has a hard time remembering that all she has to do is touch one of the puzzles that are pictured. Instead, she touches a button in the top right-hand corner of the screen. That takes her to the store. This happened several times, but the bigger problem was simply figuring out how to put the pieces in their proper places.

We both became frustrated when I couldn’t explain that some pieces have a flat side that goes next to the edge that defines the area where the pieces should be placed. I was never able to get her to understand. When I tried to show her the line that makes a frame around the space where the pieces are to go, she simply couldn’t see it. This is another instance in which her vision is a major part of the problem. It was more than that, however. She couldn’t grasp that the flat side of a puzzle piece must go along the edge of the frame/border. Finally, I suggested she look at one of her photo books.

I went to the family room and brought back the “Big Sister” album. It has always been a winner. Kate’s interest begins with the cover photo. She recognized the two children as her and her brother Ken. I thought we might be off to a good start except that she didn’t comment on their smiles. They are normally the major drawing point for her.

She looked at the picture a moment. Then she asked me what she was supposed to do with it (the photo album). I said, “Just open it and look at the pictures.” She said, “How do you do that?” (She occasionally gets confused about books or magazines. She thinks they work like her iPad. Sometimes she is confused about opening her iPad as well.) I opened the book. She asked, “What do I do now?” I said, “This is a book of family photos. You just look at them and then turn the page to get other pictures.” She said, “Show me how.” I knelt down beside her chair and asked her to look at the pictures on that page. She looked, but she had a blank stare on her face. I couldn’t detect any sign of recognition or interest. It was as though all she could see was a page with a bunch of stuff on it, something I understand is a common experience for someone with dementia.

She wanted my help, and I proceeded to express the comments that she usually make when she has looked at the album on previous occasions. I was careful to talk about the smiles or the photos where there were no smiles. I identified each of the people in the pictures. As we focused on each picture, she kept wanting to touch the picture the way she touches the screen of her iPad. She couldn’t understand that the pleasure she could get from the photos was just looking at them. I tried to help her for about ten minutes before she said she was tired and suggested she might be able to understand better in the morning.

I helped her get ready for bed and put on a Barbra Streisand album that she likes. I left the room for a few minutes. When I returned, she said something about the woman. I would have thought that she was talking about Streisand because she often asks who is singing, but it sounded like she was talking about a woman who was in the house. I asked her what woman she was talking about. It was Streisand after all. She told me she had been talking to her. It is not unusual for her to ask me if I am the one singing when she hears a man’s voice. I guess she thought Streisand was in the room with her. I didn’t try to get her to explain any further.

The experiences of the day were further evidence (as though I needed it) that Kate is on a steeper decline than in the past. I was quite troubled by her difficulty with her puzzles and the photo book. These have been two great sources of entertainment for her. I am sure that working on the iPad will be a thing of the past in the upcoming weeks or months. I hope I am wrong. I am more optimistic about the photo books. As she uses the iPad less, she may experience less confusion about what to do with her photo books. In addition, I expect her interest in family will continue a long time to come.

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Another Interesting Conversation

After dinner two nights ago, Kate took a seat with her iPad in the family room while I watered a few plants on the patio. When I came back in, she had closed the iPad and was leafing through a magazine. She looked disturbed, and I asked her about it.

She said she didn’t want to talk about it then, but she was facing a decision. I asked if she could just tell me what the decision was. She said she wasn’t ready but that she would like to talk with me later. I held back a moment. She continued to sit in her chair with her head to one side and resting on her hand. She was very absorbed in thought.

I tried very carefully not to push her, but I repeated how much I would like to be of help. Again, I asked if she could just tell me what kind of decision she was trying to make. Gradually, she started talking. She began by saying, “I really want to help people.” That led her story to unfold, but not in an orderly fashion nor could I understand everything.

I quickly realized that she had imagined having an experience with someone. She told me she “knows” a woman who is trying to help children showing signs of getting into trouble. I wasn’t at all surprised about the expression of her desire to help people, but I was impressed with the thinking she was doing about the problem of helping the woman and the children and how to address it most effectively. She said it was not an easy thing to do and would require a lot of coordination. She wanted us to think about people we could bring in to assist in the planning and implementation of the program. She was also concerned about the time frame. She said there is a lot of planning that needs to be done before taking any action; however, she felt that there could be a danger of not acting as quickly as we need to. We (she) talked about twenty minutes before she seemed to slow up. I told her she seemed to have a grasp of the situation and the challenges she would face. I suggested that she might think overnight on what we had discussed and just relax a while before going to bed. She agreed, and that ended the conversation. As I suspected at the time, it seemed to be forgotten yesterday if it wasn’t before she was asleep that night.

The experience made me think of something that has crossed my mind before. She recognizes how little she is able to do on her own. Occasionally, she says something that indicates a desire to do more to be useful rather than just working on her iPad. Sometimes she helps me with little things like making up the bed. It would be a far cry from launching the kind of program she talked about the other night, but I could enlist her help with other things like the laundry and other household chores. I have often thought of some type of volunteer work, but most of those opportunities require someone that can be counted on to be consistent in showing up. That could be a problem. I’m going to continue thinking about possibilities.

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Kate’s Last Pedicure

Kate has always enjoyed manicures and pedicures, and I have periodically taken her for both since her diagnosis. Now, however, she no long remembers the procedures and the little things she is supposed to do. The last couple of times I have stayed with her the whole time just in case she needed my help. It has worked out, but her insecurity on the previous visit made me more cautious. I made an appointment yesterday afternoon.

When we entered the salon, a different person was at the reception desk, so I pulled out one of my Alzheimer’s cards and slipped it to her. Although that was in advance of any problems, it turned out to be a good thing. I walked her back to the chair to help her get seated. Existing customers were in the seats on either side of her. It turned out getting in the chair was an ordeal. That was partially due to the fact that she had to go up a high step to get into it. The other part involves her eyesight and difficulty understanding directions. She apparently couldn’t see or didn’t recognize the chair itself. Despite my efforts to direct her by putting my hand on the seat of the chair and trying to get her to face it, she struggled to understand what we were asking. I should add that the woman who was to give her the pedicure and the woman sitting in the chair to her right were also trying to instruct and guide her. Although we were all trying to help, I suspect we added a measure of confusion. During this process, Kate let out a scream that was easily heard throughout the salon. All eyes were on her. That was just the beginning.

As luck would have it, the woman next to her was a retired nurse and very understanding. She introduced herself and explained the procedures Kate experienced. That began with the warm water running into the tub at her feet. She was frightened at first. The nurse had a very soothing voice that put Kate at ease at least as much as she could in what had to be a strange situation for her. I thought that at some point she would have some sense of familiarity with the process, but that never happened.

I brought Kate’s iPad to her chair; however, I put it down on a step to her side in our effort to get her seated. She didn’t realize it was there. It wasn’t long before she wanted it. The nurse gave her a magazine. I realized she was looking for her iPad and went over and gave it to her. I think the nurse was surprised that she was able to work an iPad. I wasn’t in a position to explain that she has only minimal capability to work her puzzles and that, with some difficulty. It didn’t take long for her to see that for herself. Kate finished one puzzle but didn’t know how to get to the next one. As usual, she made her way into the store. The nurse looked over at me and said she didn’t know how to help her. I intervened and showed her.

We had been there quite a while, when I noticed that Kate and the nurse were talking. The nurse mouthed that she was looking for her “mother.” I am sure she was looking for me and just said mother. She frequently mixes gender and relationships. The nurse showed Kate where I was sitting. She waved to me, and I waved back. A little later, the nurse called me again. This time Kate had taken her feet out of the tub of water. The nurse explained that the water was to soften the skin on the bottom of her feet so that they could smooth it out. Kate didn’t understand. I went to her and explained that she needed to put her feet back in the tub. She did, but it was only a minute or two before the attendant began her work.

That was when the “fun” started. Not knowing what was to come, Kate screamed again and responded audibly while the attendant rubbed the bottom of her heal. I went back to her and helped to calm her and then went back to my seat. In a few minutes, it was time for the other foot. Once again, she was surprised by the experience. I stayed with her for a while. When she was calm again, I took my seat in the waiting area that was about twenty feet across the room and clearly visible to Kate who waved to me periodically.

Finally, it was time to leave. It turned out that getting out of the chair and descending the step was a bigger problem than getting in. Anticipating that she would need my help, I was in place when she was ready. The first problem was standing up from a sitting position. That has become increasingly difficult at home and restaurants. This was a little more frightening for her because the chair was elevated so far off the floor. Kate is very insecure about going down curbs and stairs. To her this must have seemed like jumping off a cliff. All this was accompanied by a variety of audible sounds. As with other moments during the process, all eyes were on Kate.

As we walked out the door, Kate said, “Let’s get out of here.” I think most of the other people in the salon thought of their personal experience as a treat. Far from it for Kate. In the car, I apologized for putting her in this situation and mentioned that we might go back for a manicure sometime. She quickly said, “I don’t ever want to go back there.”

The personnel and the nurse next to Kate were very understanding. I don’t know how the others took it. I only gave my Alzheimer’s cards to the receptionist and the nurse. In my haste to leave, I didn’t think to give one to the woman on the other side of Kate and ask her to pass it around. I wish that I had because I did notice soft laughter among the group. I admit that from their vantage point, it was funny, but it was a sad moment for me. It’s been almost two months since I had to discontinue her bi-weekly massages. Now the mani-pedis. I wonder what is next.