Posted on

Morning Confusion Continues

I was just finishing up yesterday’s blog post when I heard Kate call my name. I started for the bedroom when I heard her call again. She didn’t smile when I entered the room, but she was relieved to see me. She was experiencing a milder anxiety attack than she had a couple of days ago. She didn’t appear to be as frightened, simply confused. It was another case of her memory’s being almost blank. She felt insecure and kept expressing that she felt better that I was with her. Despite her calling me by name, she didn’t remember either my name or our relationship. She clearly felt secure with me. She specifically commented that my tone of voice made her feel better and said she knew that I wouldn’t let anything happen to her.

I brought the “Big Sister” album to her. She recognized herself in the picture on the cover; however, I ran into a problem when I tried to go through the book with her. She was lying flat on the bed with her head on a pillow. It was awkward holding the book so that she could easily see the pictures. We decided to look at it later.

Then I started talking about her family. Although she was interested, it was too much information for her. As I had done the past two mornings, I played music for her. We turned our attention to it. The impact yesterday was greater than I have seen before. They were all choral pieces with beautiful harmony and soothing melodies. She was particularly moved by “Danny Boy,” “Deep River,” and “Swing Low Sweet Chariot.” Most of the time she held my hand or put her hand on my arm. A few times she asked me not to talk. She just wanted to listen to the music. At one point she shed a few tears. It was a very tender moment for both of us.

It was also a sad moment. She was still confused though uplifted by the music. She continues to have a sense that she is not all right. I think back to the times when I have heard people say, “At least she doesn’t know.” Kate may not know the name for it, but she knows she has a problem. How long will that last?

I stayed with her for over an hour. She was feeling better. I asked if she would like to go to the bathroom. She got up easily and took a shower. Most of the time, she didn’t know my name or our relationship, but she was quite comfortable with my helping her with toileting, showering, and dressing.

She was ready early enough for me to take her to Panera for a muffin before the sitter came at noon. Kate didn’t express any concern when Cindy arrived and I left for the Y. When I got home, they weren’t there. Kate hadn’t wanted any lunch until 3:00, so they had gone out for lunch. I am sure that had something to do with her having had a muffin not too long before Cindy arrived. I also believe Cindy is more passive with her than I would like. I think another sitter might have said, “I’m hungry. Let’s go get some lunch.” Kate might have responded more positively to that.

Kate may not have rested before they went to lunch because she was tired when they got back. I let her rest for an hour and a half before going to dinner. She didn’t sleep during that time. She just relaxed while listening to the music I played for her. She was ready for bed earlier than usual but was awake when I got in bed a couple of hours later.

During the night, she apparently had a dream. She was kicking her feet. I put my arm around her, and started to comfort her. She misinterpreted me and said, “No” in a very stern voice. Then she grabbed my hand and squeezed it very hard and held it for several minutes before she relaxed and dropped it. I don’t think she had been awake at all.

There is a lot going on in her brain right now. I just wish I could fully understand it.

Posted on

A Better Day, But Moments of Confusion

The way yesterday started was far better than the day before. I woke Kate just before 11:00. She smiled and was at ease. She was enjoying the music I had selected, but she wasn’t eager to get out of bed. Once she was up, everything went smoothly.

While we were eating, she said, “I don’t even know who my parents are?” She said this without any obvious sense of anxiety. It was said as though she were telling a friend about her having grown up without parents. As I told her about them, she was amazed and said, “I didn’t know any of this.” This conversation continued off and on throughout our meal.

We also had a slight rough spot during lunch as I was eating a bowl of tomato basil soup. When our server placed it on the table, she said the bread was better when dipped in the soup. Kate was eating bread at the time. I asked Kate if she would like to try it. She dipped her bread in the soup and then asked me to put some soup on her bread plate. I did, but she didn’t use it. Thinking she might not have noticed, I asked if she was going to dip her bread in it. She didn’t understand what I was talking about. I explained that she had asked me to put some soup on her plate for her bread, but she wasn’t using it as a dipping sauce. She felt as though I was scolding her, got a sad look on her face, and apologized. I told her she hadn’t done anything wrong; it was just a case of miscommunication. She was hurt, but it didn’t last long.

On the way home, she mentioned that she didn’t know her name. I told her and then mentioned her parents. She wanted to know their names. After telling her, she asked if I knew them. Then she asked if they knew her. I explained that they did and that they had loved her. Then she asked if she had ever known them. She showed none of the fright she had the previous day though she clearly conveyed a sense of regret about not remembering them.

She was tired when we got home and wanted to lie down as soon as we walked in the house. I got my laptop to jot down a few notes and sat in a chair across from her. In a few minutes, she began to cry. I walked over to her and asked what was wrong and if the tears were those of joy or sadness. The answer was joy. She said, “This is the first time I have ever really felt at home.” I didn’t push her to explain. I was just glad she was happy.

Before going to bed, she spent quite a while, at least twenty minutes flossing and brushing her teeth. She said she thought she needed to see a “doctor.” She feels something caught between her teeth and can’t get it out. I helped her floss but didn’t detect anything. I don’t know why, but I don’t see a dental appointment on my calendar. We always make one at the end of each visit. I’ll check on that this morning.

After she was in bed, she started pulling her hair as she does so often. It wasn’t long before she said, “Richard, (yes, she called me by name).” I said, “Yes.” She said, “I want to thank you for your patience.” I told her I was just happy to be able to help her. A few minutes later, she called my name again and said, “You know what makes it all worthwhile?” I said, “What?” She said, “You.” I said, “And you make my life complete. We made a good decision when we decided to get married.” In another few minutes, she said, “Hey!” I said, “What?” She said, “I’m glad to be here with you.” She repeated this five minutes later. This should give you a taste of one of the reasons I say that we have gotten along “remarkably well.” She is so appreciative, and I am working to be sure that she stays that way.

She was talkative when I joined her in bed. She continued to pull strands of hair for a long time. She said it was a lot of work to do this, but pays off in the end. She also talked about her teeth. She said it’s a small problem when compared with the big problems that so many other people face. She was very relaxed and happy. It was a great way to end the day.

Posted on

Not our Best Day: Kate’s Most Intense and Long-lasting Anxiety Attack

Yesterday started out well. I slept until almost 6:00, had breakfast, took a forty-minute jaunt around the house, watered plants, and wrote a new blog post; however, the pleasantness of the morning ended abruptly when I went into wake Kate for lunch. She had her worst anxiety attack. It was more intense and longer in duration than the earlier ones – about an hour.

She was frightened and unable to explain what she was experiencing. On the previous occasions, she has said things like “I don’t know where I am or who I am or anything.” This time the only thing she said was “I don’t know what’s going on.” She was shaking. Not surprisingly, she didn’t know my name or our relationship. I asked her if I seemed familiar to her. She said I did. I held her hand and said, “I hope you think I’m a nice guy.” She said she did. Despite letting me hold her hand, her attitude toward me was one of “approach/avoidance.” At one point, I started to put my arm around her. She resisted. It was as if she weren’t quite sure about me, but I was the only “thing”/person she recognized. There was no one else she could trust.

During the hour she and I were in bed, she repeatedly asked my name but couldn’t remember it. Only a few minutes passed before I put on some music by the Susquehanna Chorale. I selected some of her favorite pieces, “Shenandoah,” “Danny Boy,” “Loch Lomond,” “Deep River,” and “Swing Low Sweet Chariot.” I followed that with a series of John Rutter arrangements that were very soothing. I talked to her as the music played. I tried to speak slowly in a comforting voice. I mentioned many of the things that I know she likes – our courtship, marriage, and family.

Thinking that it might help to trigger a few memories, I encouraged her to get up and let me show her the house and take her to lunch. Each time she would clutch herself and tell me that she was scared and didn’t want to get out of bed. I’m not sure whether the music or my talking calmed her, perhaps both, because she gradually felt more comfortable. After a while, I asked if she would like to go to the bathroom. She did. Within moments of getting up she seemed to be better. The crisis was over.

When we got home from lunch, Kate was tired. She rested for over two hours. During that time, I asked if she would like for us to look at one of her photo books or go to Barnes & Noble. She said she just wanted to rest. About an hour before going to dinner, I picked up her “Big Sister” album that her brother Ken had made for her. I walked over to the sofa and showed her the cover picture. She didn’t show the usual excitement. I pointed to the picture of her and asked if she knew who that was. She gave me a faint smile and pointed to herself. Then I said, “Don’t you like the smiles?” She did.

I was standing in front of her and turned the book so that I could leaf through it. I turned to the first page that has a photo of Kate with her mother and father. I said, “Here’s a picture I like.” I showed it to her and said, “Why don’t you sit up and let me sit down beside you. We can look at some of the pictures together?” She still didn’t express any enthusiasm, but she agreed. By the time we got through a couple of pages, she finally responded the way I had hoped. She was getting into it. Her mood began to shift toward cheerfulness. We spent almost an hour going through the book. She was fine again, and we went to dinner. She remained in a good humor after that although she was tired and went to bed a little earlier than usual.

It was just over a year ago when Kate had her first anxiety/panic attack. Since then she made have had three or four more. Thankfully, they don’t come often. Each time one occurs I am a little surprised because I haven’t been able to see it coming. I think all but one of them occurred after she had been sleeping or resting. The one yesterday was the most intense and long-lasting. I don’t like seeing her suffer in this way and hope she doesn’t have another experience like it. I’m just glad that I am still able to find ways to “bring her back.”

Posted on

An Example of Eyesight Problems and Dependence

The other day I commented on my concern about Kate’s eyesight. At Casa Bella the other night we experienced another example of the problem. In this case, it illustrates the impact it can have on her and also her dependence on me.

The room had been rearranged to accommodate the needs of the various sized groups. The table for our group was set up for nine. That immediately caused me to wonder how Kate would adapt to a larger group. More people at the table means it is more difficult for her to understand the conversation. That makes the whole dining experience less comfortable for her.

I have always seated Kate on the side of the table that would give her the best view of the musicians. This time, however, her side was close to the back wall of the room, and she would have been in the middle with two people on either side of her. I decided it would be easier for her to get in if she took the side with her back to the musicians. The way the table was positioned I thought she could easily turn to see them as they performed.

Of course, there was no problem during the first hour before the music started. We were able to order and eat our meal while conversing at the same time. Once the music started, Kate turned her attention to the musicians. It wasn’t long before I noticed that she had a worried look on her face. She began to look around the room in all directions. I realized that she had lost sight of me and was concerned. She turned to the man beside her and said, “Have you seen my husband?” He didn’t hear her, so he didn’t respond. I reached my hand across the table and touched her arm. She looked across the table but didn’t recognize me. I grasped her hand. She looked more closely. Then she realized it was me. She heaved a great sigh of relief. I don’t know that anyone else observed her, but she was very noticeably disturbed when she didn’t see me and equally relieved when she finally did. This was another occasion when I felt like I will soon need to change our seating arrangement. I am going to try to hold off a little longer while I consider what is best for Kate. At the moment I still think a table for two would be best in the long run.

Right now there is something else I am thinking about. Casa Bella is preparing to celebrate its eightieth anniversary. They are planning a kickoff dinner in September and have made arrangements with the city to block off the street in front of the restaurant for a special Italian dinner. There won’t be any seating in the restaurant itself. I have made reservations, but I am concerned that being in such a large crowd might be overwhelming for her. I imagine they will have musical entertainment, but it won’t be like the more intimate venue inside the restaurant. I have avoided situations like this for more than a year. On the other hand, we feel close to the owners of the restaurant and the people we have met at the regular music nights. I hate to miss this event.

Apart from Kate’s uneasiness because she didn’t see me, we had a great night. Kate thoroughly enjoyed the music even more than she has at a few other recent music nights. I was happy about that.

As the situation at Casa Bella illustrates, her dependence on me is increasing significantly. It is obvious in a variety of situations. One is in her expressions of relief when I come home after the sitter has been here. I also see it around the house when she doesn’t know where I am and doesn’t remember the various rooms where I might be. Yesterday, for the first time, she thought I might be leaving her in the house alone. She had gotten up early again and taken a shower. Then she got back in bed. I told her I would get her up when it was time for lunch but to call me if she needed me. She looked scared and said, “You’re not going to leave me alone, are you?” I said, “I would never leave you alone. I will be in the kitchen.” She was greatly relieved.

Posted on

Confusion, but in a Good Mood

Yesterday morning was a time of significant confusion for Kate. It was similar to several other moments when her memory seemed to be completely blank. She was concerned but showed no signs of the panic she has had in similar situations. I was in the kitchen when I heard her call my name over the video cam. Yes, she did remember my name. This was one of those times the camera paid off. Kate called to me in a somewhat soft tone of voice, nothing like a shout or scream. The microphone is very sensitive. I heard her immediately and went to her.

At first, I didn’t sense the degree of her confusion. As she does so often, she asked me where we were. I told her we were in Knoxville. She looked puzzled. She asked why. I explained that we live here and that “this is our house.” Then I said, “You look like you are a little confused. What could I do to help you?” That opened the door to an hour-long conversation during which she asked questions (often the same ones over and over) and I gave her the answers. We talked about her parents, my parents, and our children and grandchildren. The topics also included how we had met, places we had lived, her work and mine, and other special things we have done.

Several times, I asked if she might like to get up. She declined saying, “I would rather hear you tell me about my family.” The last time I asked, she agreed it was time to get up. She took a shower and got back in bed for another hour. When I got her up for lunch she was fine.

I don’t know how confused or clearheaded she was about our relationship. I only know that she called my name when she wanted me. She was in a pleasant mood throughout the episode and for the balance of the day. This is another good example of the transition she can make extreme confusion to a more normal state. It seems clear to me that when she wakes up most of her connections to the world around her are dormant. As she receives the information I give her and as she directly experiences more of her everyday life, she feels more at ease.

That doesn’t mean she knows where she is or the people around her. Increasingly, she thinks we are staying in some other place than our home. That was true when we got home last night. In the car she asked where we would be staying. I told her we would be in our very own home. She asked if it was very far. When we drove up to the house, I said, “This is where we will be staying.” She admired everything she saw and never realized we were at home, but she was happy.

Posted on

Kate may be unsure of who I am, but she believes I am important to her.

I don’t have a clear idea how often Kate remembers that I am her husband. I know it is often enough that I have grown accustomed to her not remembering. For most caregivers this is one of the saddest things that happens as one’s spouse reaches the late stages of Alzheimer’s. That is particularly true the first few times it occurs. That has been my personal experience.

By now I have adapted and accept it. I take comfort in the fact that Kate still recognizes me as someone with whom she is familiar and is important to her. Not a day goes by without my having experiences that tell me that is so. Here are several that happened during the past forty-eight hours.

Night before last when I told her it was time to get ready for bed, she wanted to know where the bathroom was. During the past six months or so, I can’t remember a time when she didn’t ask me that. I led her to the bathroom and pointed out the toilet. I was about to leave her when she told me she wanted me to stay. This, too, is something that is becoming common. She is very unsure of what to do each step. She often asks me, “What next?” I stayed. Before washing her hands, she motioned me to come closer and whispered, “Does she know I’m a woman?” I told her I didn’t know who she was talking about but she and I were the only ones in the house. That worked; she didn’t say anything more. Sometimes she seems to recognize quickly that she has believed something that wasn’t so.

This was another time when she couldn’t understand my instructions about washing her hands. I put soap in her hands and washed them myself. This is just another illustration of her dependence. It’s not consistent, but it is increasing more rapidly than in the past.

After she was in bed, she told me that she was glad I was with her. She thought we were in a strange place and said it was a nice room, but she was feeling better knowing I was there. She began to “work” on her hair, pulling stands from her scalp to the ends. She asked me if it was all right for her to start on the right side and then do the left side of her head. I said, “That would be fine.”

I told her I was going to the family room for a few minutes and that I was not leaving her alone. As I started to walk out the door, she said, “What should I call you if I need you?” I told her my name was Richard. She said, “Okay, Mr. Richard.” I said, “You don’t have to call me mister. You can just call be Richard. She said, “What will he say?” I asked who she was talking about. She said, “You know – the other man.” I told her we were the only people in the house, and it was all right if she just called me Richard. She said, “Okay.” As you know this was far from the first time she had forgotten my name and no doubt our relationship, but over the past week this seems to have occurred for longer periods of time.

When I got into bed a little later, she was still awake. We talked for a few minutes. Then I told her I was going to sleep and said, “I love you.” She laughed. From past experience I knew that she didn’t realize that we are married, just friends. I said, “You usually say you love me too.” She said, “I’m not ready for that.” I said, “You would rather that we just be friends.” She said, “For right now anyway.” We talked a little longer. Then I told her I was ready to go to sleep. I paused and said, “Good night, I love you.” She laughed again.

Yesterday was a day for the sitter. I was relieved when she got up about 8:30. I didn’t have to worry about getting her up. She went back to bed after taking a shower. I let her stay there until 9:30 when I got her dressed. Then we went to Panera. I think this was the third or fourth time in about ten days. We arrived home just ahead of Sandy. I hadn’t said a word to Kate about my leaving. When I got my things together, I told her I was off to Rotary and the Y. She said, “How long are you going to be gone?” I told her it wouldn’t be long, that I was going to Rotary and then to the Y.” She said, “We’ll see.” She wasn’t making much of a protest, but I knew she wished I would stay.

When I go home, she was seated in a chair with her iPad, and Sandy was standing beside her. Kate said, “Oh, good.” It turned out that she had gotten into the store again and Sandy was about to help her get back to her puzzles. Sandy had probably helped her with this a number of times while I was gone. It happens frequently, and Sandy knows how to solve the problem.

Kate is almost always glad to see me. What was interesting this time was just how relieved she was. She breathed a very loud sigh of relief. Then she introduced me to Sandy as her cousin and said, “His name is Richard.” I was a bit surprised that she got my name right after slipping on our relationship. When Sandy left, she said, “I’m so glad to see you.”

Last night we had an experience like the one the previous night when she didn’t realize we were married. We were talking after I had gotten in bed. She said, “This is a nice room.” I said, “I think so too.” Then she said, “I’ve seen worse.” I chuckled. It wasn’t long before we said good night, and I said, “I love you.” Then we had a repeat of the previous night, but she did say, “You’re a nice guy. I like you a lot.” I said, “So you’re glad I’m here.” With emphasis, she said, “Definitely.” That will carry me a long way.

Posted on

Confusion

Although the day ended well, Kate was confused again yesterday. It started in when I got her up. It wasn’t the kind of confusion in which she indicated not knowing where she was or who she was, but that was probably true. There were moments when I don’t believe she recognized me, but she didn’t say so. She vacillated between being trusting and being suspicious of me.

When I approached her bedside to wake her, she responded with a smile. In this respect it was similar to the other day when I rushed her, and her mood changed. We had plenty of time and no obligations. I was determined to avoid rushing her. When I reached out my hand to help her up, she pulled away and didn’t want me to touch her. I followed her instructions. She asked where the bathroom was. I told her I would show her. (She often likes to take my hand right after getting up. She walks a few steps and then drops my hand. Sometimes she holds it all the way to the bathroom.) I reached out my hand. She didn’t take it. Then she took one step and grabbed my hand.

Once we were in the bathroom, she needed me to tell her exactly what to do. This was not the first time, but she looked more confused than usual. I pointed out the toilet. She gave me a look that I interpreted as “Is this it?” I said, “Yes.” I helped her wash her hands and put toothpaste on her toothbrush. She takes a long time. I left her to go back to the kitchen where I could see when she was through via the video cam.

She was in the bathroom a while before coming out. When I saw her, I went back to help her dress. This was a morning when she didn’t want my help. I did help her get started and then went back to the kitchen. I won’t go through the whole saga, but it was almost an hour before she was dressed and that was only because I went back to check on her periodically during that time. The downside of that was that she felt rushed. Several times she snapped at me to leave her alone. She apologized each time. She was genuinely sorry.

She enjoyed the music during the ride to lunch, but her mood changed as we waited for our food. Carla’s serves brunch on the weekends, and it is a popular place. It was very noisy, and it took a little longer to get served. That caused her to be a little grumpy. Once the food arrived, she was all right.

She seemed a little listless when we got home. I decided to try something new. I hooked up my laptop to the TV in our bedroom to show her some old slides taken when our children were born. I thought that might brighten her day. I showed her several slides. She didn’t respond as I had hoped. She said she was tired and wanted to rest. We went back to the family room where she rested on the sofa for about an hour. She rested a little over an hour before we went to Barnes & Noble for a while before dinner.

After dinner, I suggested we look at one of her photo books. She wasn’t enthusiastic but agreed. We started to look at one, and she said she was tired. I decided it might be good for us to go back to the bedroom and watch some music videos on YouTube . She took her iPad and worked puzzles while watching the videos. The day ended well.

I think she was confused a good bit during the entire day. There were periods when she seemed to be fine, but she seemed more dependent on me than usual. It appeared that she was worn out. That wouldn’t surprise me. She works hard to understand what is going on around her, but it is increasingly difficult for her.

Posted on

The Intensity of Kate’s Intuitive Abilities

I have often mentioned how much pleasure Kate and I receive because of her intuitive abilities. Recently, I indicated that they seem even more intense now than they used to be. Several things have happened in the past few days that reinforce my belief that they really are more intense now than before. All of them involve behaviors I have previously observed, but they were so much stronger than normal I wanted to pass them along. They are all experiences that involve her emotional response to visual stimuli.

Many of them involve her feelings about trees and flowering plants. She seems enraptured wherever she sees them. The plants on our patio and the trees on the neighbor’s property behind our house get most of her attention. She stops to look at them almost every time she passes through our family room. It also includes the flora she sees whenever we are in the car. This occurs even in areas that I wouldn’t say are especially beautiful, like some of the areas on either side of a highway. One of those instances happened at Chalupas Monday night. As we entered the restaurant, she saw two large pots with a grassy plant similar to liriope. They looked desperate for water. She immediately reacted to them and told the server who greeted us how beautiful they were. They have been in the same place for as long as I can remember, but this was the first time she has reacted to them.

The strength of her feelings is illustrated in a variety of other ways. She bought a ceramic cat many years ago that she used to keep in the bath off our our laundry room. It was something of a surprise to visitors who saw it at the base of the toilet. I moved it to the family room sometime in the past year or so. It now resides on the floor near the doorway from the family room to the kitchen. We pass by it every time we leave the house. It is only recently that she has taken special notice of it. Now she stops and says hello each time she walks by. A couple of weeks ago, she said we ought to give him a name. The next time she walked by him I told her his name is Pepper for Dr. Pepper since that is her favorite drink. She can’t remember the name, but she always likes it when I tell her.

She also takes greater interest in family photos each day. Two of those are of our daughter in her wedding gown that sit on a dresser in our bedroom. They catch her eye every morning. She doesn’t remember they are of our daughter, but she loves looking at her and her smile. The other pictures are grouped together as we leave the family room. Two of them are of our son when he was a child. Another is a picture of me when I was about twelve. There is one more of her father. It has become a ritual to stop and look at these photos each time we go out. She surprised me yesterday morning when she saw her father. She said, “I know who that is.” I said, “Who?” She said, “My father.” That was the first time I recall her recognizing this photo of him. On several occasions recently, she has picked up the photos of our son and asked if she could take them with us. I let her take them to the car. Once we are in the car, she usually gives them to me. I find a secure place to put them and return them to the house when we get home. The walk through our family room is turning out to be something that energizes her as we leave.

Night before last, she went to the bathroom before we went to dinner. She noticed a ceramic container with artificial flowers beside the sink. She had purchased it on our last trip to Fort Worth. Until last night, I don’t remember her saying anything about it. But she brought it to me. She said she loved it and asked if she could take it with us. I told her she could. It remained in the car until we got home when I brought it inside and put it back where she had found it. She not only received pleasure from seeing it but also being able to take it with her.

Another example occurred after lunch yesterday. As I turned into the driveway, she was puzzled about why we were here. I said, “This is our house. You’ll recognize it once we are inside.” I gave her a tour of the house similar to what I have done a couple of times in the past but much shorter. I pointed out a portrait of her grandfather and another of her mother, wedding photos of her and our daughter Jesse, and other artwork. She raved about everything she saw but never responded as though she had ever been here before.

When we circled around to the family room, she wanted to rest. She lay down on the sofa looking toward the backyard. She responded to that with enthusiasm. In addition, she looked around the room, and commented on how much she said she liked it. She said, “This is beautiful, and I haven’t even seen the rest of the house.” I told her I would be glad to show it to her. She said, “Not right now. Maybe tomorrow. I just want to rest.” And that is just what she did for the next three hours. She started working on her iPad but put it down after a few minutes. She was never asleep. I offered to go through family photo books, but she preferred to lie there. Like the day before, she was content. By the way, the battery on her iPad was at 81% of capacity this morning when I brought it to the kitchen to be charged. That makes three days in a row that the iPad hasn’t seen much use.

Experiences like these are not only important for her, but they are for me as well. It is sad that the tour of half the house did not jog her memory at all. On the other hand, she enjoyed the house tour. It’s an illustration of how each of us is still able to provide pleasure for the other. At this stage of her Alzheimer’s, that is priceless.

Posted on

Our Sunday

Kate surprised me again yesterday when she woke up early. I assumed she wanted to go to the bathroom and then return to bed. The first part was right, but she wanted to get dressed and “get out of here.” I suspect I have mentioned this before in passing. It is not unusual for her to think she is someplace other than home when she wakes up. That much is pretty normal, but her mood about being elsewhere isn’t always the same. Sometimes she is just curious to know where she is and asks. Once in a while, like yesterday, she begins with a negative emotion about where she thinks she is. Nothing she has said or done has given me an idea of how this originates. I suspect it may be from a dream she has had. Another possibility is that she has been awake, looked around and tried to figure out where she is. When she can’t, she is either frightened or angry and wants to get out. As we walked to the bathroom, she said, “Why am I here?” I explained that this was our house, and we were in our bedroom. She gave me a look of mild surprise. She couldn’t quite believe it.

Although she wasn’t in a good mood, she seemed to relate to me quite naturally. I got her to the bathroom and dressed much more quickly than usual. That must have related to her desire to get out of the house. I was happy that I hadn’t had to wake her and that we would have time for a trip to Panera. Leaving our bedroom, I walked her through the hallway and showed her the family pictures we had looked at the day before. I don’t know if she realized she was at home, but she seemed like she did when we left the house. We spent an hour at Panera before leaving for lunch.

She was quite cheerful and sang a little with the music as we drove to the restaurant. Andriana’s opened at 11:30. We arrived at 11:35. There was only one other person there when we walked in the door. That proved to be a good thing since it gave us more time to talk with our server. It made for a nice social encounter. This is the server who has observed more of Kate’s symptoms than other servers. Not surprisingly, the poster of a mugshot of Frank Sinatra leads to some of it. Kate had asked me two or three times who he was. A moment after the last time, our server approached the table, Kate pointed to the poster and said, “Who is he?” When the server told her, Kate said, “That’s what Richard says.” It’s interesting how she remembered that but not Sinatra’s name until the server told her. This is not unusual. She often says, “I know I’ve asked you before, but who is he?” Sometimes she says, “I don’t know why I can’t remember his name. Who is he?”

We attended a local theater production of Matilda in the afternoon. Our last theater experience in the spring had not been the best, but I thought all the children in the cast would draw her interest. I was right. We had seen the show on Broadway four years ago with our daughter and son and three of their children. Everyone liked it, and the children in the show were of the caliber you would expect on Broadway. I wondered how our local talent would compare. I was glad to see that they did very well. That may have made more of a difference to me than to Kate. I think she would have enjoyed it as much even if they hadn’t been that good.

When planning activities like this, I place primary importance on how well I think Kate will enjoy the performance (movie, zoo, museum, social occasions), but there are also other things I need to consider. At this time of the year, the heat is especially important. Kate is sensitive to lots of things. Heat is at the top of the list. She complains a lot when we are outside during the day. I would definitely not think of going to the zoo in summer.

That also raises another issue – how far we have to walk from the car and back again. Walking is becoming more difficult for her, and she is very slow. Her slowness is relevant in other ways. Going up and down steps or in and out of entrances to buildings, I am sure others behind her can get a little impatient although I’ve never seen anyone react that way. Fortunately, there is a back door to the theater. I hadn’t realized it was available for anyone who needs it, but a volunteer at the door could see how slowly Kate was walking and invited us to enter. That saved a lot of steps for her. It turned out our seats were fifteen feet away from the door.

I had selected two seats next to the aisle. Kate needed my help getting into her seat. When she sat, she let out a loud noise. This is something that is becoming more common. It’s hard to describe, but it sounds a little like “Oh” as she releases air from lungs for a couple of seconds. A family of four came in shortly after we were seated. It took a while for me to get Kate out of her seat and explain where she should move so that the family could take their seats. She wanted something to drink, and we went to the lobby at intermission. When we got back to our seats, the family next to us had not returned. I suggested we stand in the aisle and wait for them. Kate kept wanting to take our seats. We sat down. That was just as difficult this time as before. A few minutes later, the family returned, and we had to get up again. This meant another challenge for Kate to get up and the sit down again. Increasingly, I am learning what so many other people already know – that lots of little things are more difficult if one has physical problems to deal with. As I look ahead, I need to pay more attention to accessibility. That is becoming just as important as the event or occasion itself.

The good news is that she liked Matilda. We also had a good evening at home after dinner. We went through Kate’s memory book together. I read everything to her. She can only get snatches of the text if she tries to read for herself. We also went through half of one of her photo books before she was tired. We went to the bedroom where I played a series of opera arias on YouTube to end the day. It is clear that we still enjoy ourselves, but it is equally clear that life is becoming more challenging for both of us.

Posted on

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.