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Another First

Although Kate has become very dependent on me, I have made a point of holding back as long as possible on a couple of the most personal aspects of her care, toileting and showering. As of yesterday morning, we broke the barrier with respect to her shower. This was not something I had planned. It came about quite naturally. For months I have walked her to the shower, turned it on, gotten her towel for her and pointed out the soap. Then I let her take over. When she got in yesterday, I noticed that she wasn’t using the soap. I opened the shower door and reminded her to use it. She didn’t understand what I meant. I pointed to it and told her to pick it up. She still didn’t understand what I was trying to tell her. That led me to show her. I put it in my hand and rubbed it on her body. To my surprise, she accepted that willingly, and I ended up bathing her. She didn’t protest at all. Then I used the shower wand to rinse her. She seemed to like that and would point to spots I had missed or that she wanted to be sprayed again. When we finished, I turned off the water and gave her a towel to dry off.

Like other changes, I don’t expect that this means that I will start bathing her all the time. It is a sign, however, that it may not be long before showering is another of the ADLs (activities of daily living) for which I play a more active role .

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Confusion and Mood Control

When I woke Kate yesterday, she was confused about me. She was very suspicious of me. This was unlike the day before when she didn’t recognize me as her husband from 5:00 until I went to bed last night. At least she seemed comfortable with me. That wasn’t true yesterday morning. It was somewhat awkward for her because she was completely dependent on me to get her to the bathroom and ready for the day.

I decided not to push her or try to explain anything. I just helped her get ready. When she was dressed, I told her I wanted to show her something. She followed me into the hallway off our bedroom where we have several pictures of her family. We stopped at the first one. I said, “This is your grandmother Franklin.” She smiled, and her eyes lit up.” I told her that was her father’s mother and there was something special about her that she would like to know. I said, “She was the first member of your family to go to TCU.” (a bigger smile) Then I told her we have a grandson who is the 60th member of her family to attend TCU, and his sister will join him in the fall. She was coming around.

The next picture is one of her mother that must have been taken in her late teens. It’s a beautiful photo and one of my favorites. I explained that she was her mother. It was no surprise that Kate was drawn to her smile and commented on how beautiful she was. We continued down the hallway and looked at pictures of her grandfather as well as her father. By that time her mood had changed dramatically. I don’t mean to suggest that she now understood that I was her husband, only that she was happy.

From that point we went into the family room where I showed her several other family pictures. As usual, she also admired the plants on the patio. Then I took her into the kitchen for her morning meds, and we left for lunch. I played music that I know she likes all the way to the restaurant.

When we returned home, I asked if she would like to work puzzles on her iPad or look at some of her family photo books. She noticed an album of her father’s family and picked it up. I asked if she would like me to help her with it. She said no. I went to the kitchen work on my computer. An hour later, she wanted to rest and spent the next two hours lying on the sofa. I brought my laptop into the room so that I could sit with her. I don’t think she ever went to sleep. After a while, I asked if we might look at family pictures together. She said she would but “later.” She said she just wanted to relax. I let her do that another half hour before going to dinner.

After dinner, she picked up a coloring book I bought for her about two weeks ago. She hadn’t shown any interest in it before. This time she opened it and spent at least forty-five minutes going through it. It is a big book – 200 pages. I was surprised she could spend that much time looking at it. She didn’t even take the crayons out of the box. When I suggested that we go back to the bedroom, she said she just wanted to finish the last few pages. I told her that would be fine. I was very curious as to what she was doing. There is nothing to read, only cartoon-like figures and shapes to color. When I looked over her shoulder, I saw that she was meticulously going through each page, touching each drawing or part of a figure on each page. She was pushing them the way she touches the screen of the iPad. Of course, nothing would happen, and she moved to the next one. I am still puzzled that she went through the entire book that way. She never appeared to be frustrated. Looking at her from across the room, it appeared that she was enjoying herself. It’s just one other thing that puzzles me.

She wanted to do something else once we went to the bedroom. She didn’t want to work on her iPad or look at photo books. She said she would like to read something. I gave her the three-ring binder that I call her “Memory Book.” It contains a variety of information about her and her family as well as our courtship and marriage. When I gave it to her, she didn’t know what to do with it. I explained that it was information about her life and that she could just read through it. She still didn’t understand. I read the initial information and then turned it over to her. She started touching selected words on the page just the way she had done with the coloring book earlier. When I explained that the book was different than her iPad, that touching the words would not take her to something else, she closed the book. I decided it was best not to push it.

She was already in bed. I told her I would put on some YouTube videos and pulled up a mix of videos of The Three Tenors, Pavarotti, Andrea Bocelli, and Andre Rieu. She listened to the music for over an hour while lying in bed. She was very happy, just another example of the power of music.

We experienced only one other hiccup before going to sleep. When I got into the bed, I frightened her. She apparently had forgotten I was there. When I spoke, she realized who it was and was relieved.

As you can tell, there is a lot going on in our lives right now. Apart from these moments, we had a good day. We enjoyed good moments together, and, except for frightening her, the day ended on a high note. What is encouraging is that even with her moments of confusion and feeling down, I still find it possible to find a way to bring her back. I hope that is something that will endure for a while longer.

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Adapting to Change

Kate has made many changes since her diagnosis past 8 ½ years ago. They are happening more rapidly now, and they are the kind of changes that alter our social activity. Some of them are more difficult for me to accept than others. One of those is forgetting who I am. The first time I was aware of this change was a year and a half ago. At that time, I wrote about it in a post on February 22, 2018. I am copying a portion of that below.

Could she be forgetting my name?

After we ordered our lunch today, Kate looked across the table at me and asked, “What is your name?” I misunderstood her and thought she said “her name.” She said, “No, your name.” I made some lighthearted comment, and she said, “No, seriously, what is your name?” I said, “Richard,” and she said, “Creighton.” Then she asked if I had another name, and I gave her my middle name.

This is the second time in the past few weeks that she has asked my name. In each case, I first thought she was just playing games with me. My second thought was, “Could she really be forgetting my name?” Today it seemed clear that she might be doing just that. . . I know, of course, that there will be a time when she forgets my name and then forgets who I am. I am already witnessing that happen to close family members. I just hadn’t thought we could be approaching the time when her forgetting would include me. I’m not ready for this.

I wasn’t ready for that. Since that time, I have often reported on conversations similar to the one above. It has been obvious that forgetting my name and that I am her husband has become more common than in early 2018; however, my present emotional response is no longer the same as it was then. That may sound surprising to some who have not gone through this experience, but caregivers are always adapting to the changes experienced by their loved ones. Forgetting a spouse’s name and relationship is just one more.

When I first notice new things that Kate is doing or not doing, it becomes a new reminder of what lies ahead. Her recent difficulty working jigsaw puzzles on the iPad is a good example. That’s a big one because that has been her primary activity for the past two or three years. Her increasing dependence on me is another. With the passage of time, however, I become more accustomed the changes. I keep adapting to a new reality.

I am aided by the knowledge that she needs me. We have given ourselves to each other for over fifty-six years, but we have never experienced anything comparable to the way in which Alzheimer’s has taken away her ability to survive on her own. That brings about an overwhelming drive to make her as happy, safe, and comfortable as I can. That emotion tends to override any sadness that accompanies her changes.

In addition, Kate and I still enjoy life and each other even in moments when she doesn’t remember me. Yesterday she had an extended time during which she thought I was a friend, not her husband. That would have been shocking two years ago but is becoming more natural for me now.

It started when I got home to relieve the sitter. She had been resting on the sofa in the family room. There was something about the way she greeted me that made me think that she didn’t realize that I was her husband. When we talked after Cindy left, it became clear that my suspicions were correct. She didn’t ask who I was; therefore, I didn’t tell her my name or our relationship. She recognized me a someone she knows and was very comfortable with me. We enjoyed ourselves during dinner, but she didn’t say anything that made me think that she of me as anything but a good friend.

When we got home, I played YouTube videos of Pavarotti and The Three Tenors as well as Jonas Kaufmann. We both enjoyed the music. It was a nice way to end the day. Yet it still appeared she didn’t know me as her husband. That was confirmed when I got into bed. She was still awake, and I moved close to her. We talked about having a nice day. She was very comfortable. I couldn’t resist testing her and made a not-so-subtle comment about our being married. She laughed. I said, “You don’t think we are married?” Very confidently, she said, “No.” Thus we went to sleep without her ever knowing or acknowledging that we are married. That is the longest period of time she has not recognized our relationship. I had my arm around her for a short time after we got in bed. I released my arm when I turned onto my back. Then she grasped my hand and gave it a squeeze. I felt happy just to know that she still thinks we have a special relationship. I would have been very unhappy with that two years ago.

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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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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.

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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.

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Something New, A Sign of Things to Come?

Yesterday was my day for Rotary, and that means the Monday sitter, Cindy. As I typically do, I went to wake Kate about an hour before she arrived. I turned on an album of cello adagios a short time before going to the room. When I got to her bedside, she was sound asleep. I said good morning to her softly. She didn’t respond at all until I sat down on the bed beside her. She looked at me and smiled but didn’t say anything. I explained that it was my Rotary day. I also reminded her that Cindy was the person who takes her to lunch. Then I told her I would like to help her get dressed before Cindy arrived. She indicated that she didn’t want to get up. I asked if she wouldn’t prefer that I help her get ready rather than Cindy. She said, “I can dress myself.” She wanted to rest.

I left the room and came back about two or three other times. We went through a similar conversation with the same results. She said she wasn’t getting up. By then it was close to 11:45. I felt that my only choice was to leave her and let Cindy take care of getting her up later. When Cindy arrived, I took her into the room to let Kate know that she was here. Kate greeted her with a smile and said she was glad to see her. While they talked, I left.

When I got home four hours later, I saw that Cindy was sitting in the family room alone. Kate was still in bed. Cindy said that she had gone in several times to see if Kate wanted to get up. She said she wanted to stay in bed. I chatted with Cindy a few minutes and then went to check on Kate.

She was awake. At first, she didn’t appear to recognize me. I said, “Are you glad to see me?” She said, “Yes,” but without a great sound of relief. At that point, I knew she had been in bed for at least nineteen hours without having gone to the bathroom. I’ve heard other caregivers’ reports of a variety of “toileting” or “hygiene” issues. Fortunately, we have had only minimal experiences with bladder control. This time it was bladder and bowels. It could have been worse. She didn’t have diarrhea.

I said, “I bet you would like to go to the bathroom. I’ll take you.” She didn’t hesitate. She sat up and sat on the bed. Before helping her up, I said, “I’ll be glad to help you. Do you know you I am?” Rather firmly, she said, “Yes, you’re part of the family.” I said, “Do you know the relationship?” She said she didn’t, and I told her. She said, “Oh.”

I took her to the bathroom and prepared the shower for her. I didn’t have to coax her. She was ready. She took a long shower. While she was showering, I put the sheets and night gown in the washer.

When she was finished, she wanted me to help her dry off. Because she had been in bed so long, I thought she would not want to get in bed after her shower, but she did. She relaxed in bed for about thirty minutes before I got her to dress for dinner. At that point she seemed quite normal and even referred to me as her husband. We went to dinner at Chalupas. I was surprised that she didn’t eat all of her food after not having eaten since dinner the previous night.

We came back to the house and had a very nice evening with the news, iPad, and music before turning in at our regular time. The day ended as though nothing of significance had happened. I was concerned that she might have trouble going to sleep, but she didn’t. She is still sleeping as I finish this post.

Having reflected on yesterday’s experience, I imagine that she wanted to go to the bathroom but didn’t know where it was and didn’t feel comfortable having Cindy help her getting to the bathroom, showering, and getting dressed. Before she got in the shower, I asked Kate if she had been scared. She indicated she had. It had to have been an uncomfortable experience for her. I’m puzzled by the fact that she didn’t call for me. Cindy went in several times, but she probably couldn’t remember Cindy was there for long after she went back to the family room. She must have felt alone and didn’t know what to do. I suspect she was awake the whole time. I hope this doesn’t happen again. If it does, I hope I am here.

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A Visit With Nashville Friends

We drove to Nashville yesterday afternoon to have dinner with longtime friends Jan and Scott Greeley. Kate and Scott have known each other since infancy. Their mothers were friends and pregnant with the two of them at the same time. We spent the night in a hotel and will have lunch with them before going home this afternoon.

It had been about six months since we last saw them. Kate has changed so much since then that I was eager for us to visit before she declines much more. I am glad we did. This was the first visit with any of our friends in which Kate’s changes have been so obvious. I had already prepared them in terms of conversation with her. What I hadn’t done was to let them know of her physical changes as well. In fact, it is something I have only mentioned in passing in my blog. They discovered this before we even got in the house.

They saw us drive up and came out to greet us. We walked up two or three steps to enter their house. Kate is fearful of falling, and she struggled to get up the steps and into the house. She also expressed audible expressions of anguish. This, too, is something that is common. As we entered the house she wanted to hold my hand. This is something that has become increasing common just in the past few weeks. She is very unsure of herself in unfamiliar places. It’s more than a fear of falling. She doesn’t know where she is going, so she holds my hand to guide her.

Over the past few days, I had been trying to refresh her memory about our relationship with them. Of course, I know that she can’t remember, but I wanted to try anyway. It was of no use. Even after reminders as we got close to their house, she had no idea where we were going and who we would see. For the most part, she handled herself well. I don’t think she said or did anything that suggested she didn’t know them. I believe she felt a general sense of familiarity with them but not as strongly as I had hoped.

The Greeleys are making a trip to New Zealand in December and had asked me to bring pictures from our visit there in 2014. We chatted about hour before looking at our slides. Kate was tired and wanted to lie down. She took a seat in a lounge chair and rested while we continued the slide show. When we were finished, we walked into the den where Kate was resting. Scott said something, and Kate said, “You’re a pretty nice guy, and I don’t even know who you are.”

Going out to eat gave the Greeleys another sign of her physical challenges. There was nothing dramatic, but she walked very slowly. She was unsure of herself as we entered the restaurant. She wanted to hold my hand most of the way to our table. Getting into and out of the booth she seemed like a person much older than she is.

I find moments like this to be sad ones. Because of their history together, Kate has always felt very close to Scott. It was sad that she couldn’t remember him. He and Jan gave her two photos taken when the two of them were in high school. I will put them in the three-ring binder that I call her memory book, although they didn’t prompt the enthusiasm that I would have liked. Kate has clearly reached a new stage.

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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.