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More Examples of Kate’s Expression of Emotion

One of the ways I have adapted to Kate’s changes is to avoid things that might lead to negative emotions. That is not always easy. For example, I have no control over sudden loud noises like those we encounter in restaurants or any other public settings. One of the things over which I can have a degree of control is avoiding topics that cause her to be sad. I try not to mention mass shootings or other terrorist activities or natural disasters. She is unusually sensitive to them these days.

There is no way, however, that I can protect her from everything. Yesterday I had a routine appointment with my doctor. It had been more than six months since I had seen him. I knew that he had had open heart surgery since my last appointment and planned to ask him about it. As you might imagine, it was a big event in his life. He was ready to tell the whole story.

As he began, Kate was touched. She had tears in her eyes and whimpered audibly while he talked. As he neared the end, I said, “I suspect you came away with a very different perspective on life.” He said he did and began to tell us how he was looking at life now. As he did, Kate entered the conversation herself and agreed with his thoughts about taking advantage of every moment in a way he had never done before. She didn’t do or say anything that was bizarre, but she was moved in a more dramatic way than one would expect in the situation.

As we were driving home, she had another emotional experience. This one was more surprising to me. We went through a heavy rain when she started a conversation that I didn’t initially understand. It was about the danger of storms. She couldn’t find the word she wanted. We played a guessing game for a minute or two before I guessed the word “pets.” She was concerned about dogs and cats that might be caught in the rain. We were less than ten minutes from home, and she talked about the need for pet owners to see that their pets were inside at times like this. Her concern went beyond what I would call normal. She was quite worried about them. When we walked into our house, she said, “Let’s check on the dogs.” I explained that we lost our dogs six years ago. Immediately, I was worried about causing an even greater emotion, but she just said, “Oh.”

Another minor incident happened when I tried to help her with something she wanted to do it herself. I don’t even remember what it was, but she snapped at me. I said, “I’m sorry. I did it again. I was trying to be helpful but went too far.” Then she apologized to me and was very sad. She started to cry. I gave her a hug and reassured her that she hadn’t done anything wrong.

She is very sensitive right now, and I hate for her to feel sad or guilty. Fortunately, these emotions have been short-lived.

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Kate doesn’t always remember I’m her husband, but she still feels secure with me.

It is impossible for me to know how much of the time Kate remembers that I am her husband. I used to be able to identify specific moments when she didn’t. For a while I noticed these moments were longer in duration. More recently, she has brief moments when she knows and doesn’t know. She used to ask my name and our relationship a lot. Sometimes she still does that, but she asks much less frequently than before. She seems to be adapting to not knowing.

What I consider of greatest importance is that she continues to recognize me as someone with whom she is familiar and trusts. Even in those moments when I know she doesn’t remember I’m her husband, she is very comfortable with my helping her with toileting, showering, and dressing. Increasingly, she has become more comfortable just having me around. That has been obvious in her reactions to my returning home after the sitter has been here. In those cases, she has been very relieved when I walked in.

This emotional dependence is also evident in lots of little things that occur on a daily basis. For example, yesterday I had a United Way committee meeting during the lunch hour. Our sitter was scheduled to arrive at 1:00, and I needed to leave the house about 11:30. I asked a church friend, Martha, if she would take Kate to lunch and get her back home for the sitter. Kate has known and liked her for a long time. They used to eat lunch together regularly when Kate was the church librarian and Martha was an assistant to one of the pastors.

It had been at least six months since they had seen each other, and Kate didn’t remember her but had retained a good feeling for her. When Martha arrived, Kate greeted her as naturally as I had hoped. I knew everything would be all right, and it was. Although I had told Kate she would be going to lunch with Martha while I went to my meeting, Kate assumed that I was going to lunch with them. When she discovered I wasn’t, she had a sad look on her face and said, “You’re not going with us?” I told her I was going to a meeting. She said, “I’m going to miss you.” I told her I would miss her too, but I knew that she and Martha would have a good time together. As she got in the car, she said, “I’m almost embarrassed to say it, but I’m going to miss you.”

As I said, this is a little thing, but I took special note of it because she seemed so comfortable with Martha. I hadn’t expected her to be concerned that I wasn’t going with them. I am sure their lunch went well. I haven’t talked with Martha, but I will.

At dinner last night, Kate asked my name. Then she tried to ask our relationship, but she couldn’t figure out how to say it. I said, “ Do you mean ‘How are we related?’” She said yes, and I told her we were married. She said, “No.” I said, “What about being good friends?” She didn’t like that and suggested that we might be like cousins. Then she said, “But that wouldn’t be true.” Then I suggested that she think of me as a helper. At first, she liked that. Then she changed her mind. About that time our food arrived, and we never finished the conversation.

After we were home, I had the impression that she still did not think of us as a married couple. Then our son called. We had a nice conversation with him. Our granddaughter had begun her freshman year at TCU on Monday, and he updated us on how the move had gone. During that conversation, it must have been clear that we are married. She didn’t express any concern or doubts about our relationship the rest of the evening.

It strikes me that she must be experiencing this kind of shift from knowing and not knowing other things as well. That would include other people, our house, and where we are. There were times yesterday that she thought our house was someone else’s house. She has never said anything that suggests she perceives these shifts as strange. What I do recognize are those moments when she doesn’t seem to know anything. That is when her anxiety attacks occur.

This very morning brought another illustration of her dependence on me as a source of security. She had gotten up early to go to the bathroom and gone back to bed. About forty-five minutes later, I heard her call for me. When I reached her, I asked if I could help her. She said, “I don’t know.” In the past, this is what she has said when she was have an anxiety attack. The difference this time is that she didn’t seem to be frightened or unnerved as she has before. I asked her if she would like to bring my things to the bedroom and stay with her. She said she did, and thanked me when I returned. Then she asked my name. I told her. Over the next thirty minutes, she asked the same question again. She didn’t ask, but I got the impression that she didn’t remember our relationship. She did, however, tell me she was glad I was with her. In this case, I wasn’t doing anything but sitting next to her in my chair as she tried to go back to sleep. It took quite a while before she was asleep, but she was relaxed.

In the past few days, I have also noticed an increased desire to hold my hand while we are out. She has said, “I want to make sure I don’t lose you.”

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A Couple of Unpleasant Moments, But a Good Day

Yesterday was a beautiful example of our mixture of good and bad moments. We got off to a good start when Kate woke up before 8:00 to go to the bathroom. She was confused, but she seemed to be in a good mood. Several times she asked where she was and why she was there. When I got her back in bed, I told her I would be in the kitchen if she needed me. She looked frightened and said, “Don’t leave me.” I got my laptop and brought it back to the bedroom where I stayed for about an hour. She was awake a good bit of that time and periodically talked about how glad she was that I was with her. Finally, she fell asleep, and I went back to the kitchen.

A little over an hour passed. I decided it was time to get her ready for the day. I had an 11:30 appointment for my labs before seeing my doctor for a checkup on tomorrow. She got up easily. Then she took a shower and got dressed.

She was fine the rest of the day. After our short visit to the doctor’s office, we went to lunch. She was talkative. We both enjoyed ourselves. We returned to the house for an hour before going for our hair appointments at 3:00. After that, we spent another hour at home before leaving for dinner.

During that time, Kate spent a while going through a book of “word searches” that I had bought for her about six months ago. She has never been able understand the concept that you look at the rows and columns of letters and try to find the words that match the topic for a particular one (Bugs or Islands or Weather, etc.). Yesterday she enjoyed looking through it and created her own explanation of what it was about. I didn’t understand it, but she thought it was something that we could give to trick or treaters at Halloween. I didn’t try to get her to explain. I knew that would be impossible. I was just glad that she found pleasure in looking through it.

After dinner, she worked on her iPad for a longer period of time. She was so engrossed that when I suggested we go back to the bedroom and get ready for bed, she didn’t move. I told her I was going to take my shower and encouraged her to come to the bedroom. She reluctantly agreed.

I put on a YouTube video of an Andre Rieu concert earlier this year while I showered. When I got out she was still working on her iPad. Everything was going smoothly. When I got out of the shower I told her it was getting time for bed. I put the night gown out for her. I try to give her a chance to do this by herself. She prefers this, but often runs into a problem. That was true last night. She asked me to help. That went smoothly, but in the process of getting her to the bathroom, brushing her teeth, and taking her nightly meds, I rushed her. She was angry. That is not something that I am accustomed to seeing. She said, “You just want to control everything I do.”

I realized I had stepped over the line and apologized to her. I told her I really wanted to help her but realized that I can go too far. She began to cry and apologized to me. The crisis was over in just a minute or two, but it made a big impression on me. This was not like anything we have experienced before. Neither one of us likes conflict, and we both work to avoid it.

With that behind us, I helped her into bed and went over to the chair on my side of the bed. I put on some music and was prepared to read for a while as I usually do after she is in bed. This time she wanted me to come to bed with her. I turned off the light and joined her. She said she felt better if I was with her. We didn’t talk much. She began to relax, and we both went to sleep.

As I do so often, I wonder what is going on inside her brain. I recognize that it is possible to calm her. Playing music, being with her, and talking slowly helps her relax. I know that when I rush her, I am asking for trouble. She also has times when she is anxious or afraid. I think the fact that so much of what we do keeps her focused on enjoying the moment that she doesn’t normally feel  anxious. When she first wakes up in the morning, the memory of all the good things we did the day before are gone. She doesn’t know anything. I think I can understand that. I would probably be anxious myself. I also know that I don’t like to be rushed and work hard to avoid it. She is unable to take the steps to avoid being rushed. It takes an external source to do that. I am it, but I have to be very careful to get her ready without her feeling rushed. That is harder now than it has been in the past.

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Lots of Little Things

It seems like each day is a little different now. Kate is much more emotional, dependent, and confused. The combination is making a difference in how much time I devote to tending to her needs. This morning was a good example.

After I was dressed and about to begin my daily morning routine, she wanted to go to the bathroom. I took her and got her back in bed. She seemed especially needy and held my hand going and coming. Several times she thanked me for helping her. As usual, she was confused about where she was. I explained that we were at home, but it didn’t sink in until she looked out the window at the back yard.

Once she was in bed, I told her I would be in the kitchen if she needed me. She didn’t want me to leave her. I asked if she would like me to get my laptop and sit in the chair beside the bed. She was relieved that I would do that. This is the time of morning that I get my breakfast, check the news, get in a little exercise by walking around the house listening to a book, and then tending to my blog. It’s not great problem to make the change in plans, but it is a good example of what is occurring more often than in the past.

Yesterday morning was a different kind of experience. I let her sleep until 11:00. Then I got her up to be ready for the sitter who was taking her to lunch at noon. As we were leaving the bathroom to get dressed, she got a sad look on her face and said, “Just think of all the people who have to go through all this (not sure what this meant) and don’t have all the things we have.” It is not unusual for her to express her feelings about people who are less fortunate than we are, but this was a much stronger expression of those same feelings. She began to cry. I tried to comfort her as I helped her get dressed. Then as we walked to the family room, I saw one of her family photo books and decided to divert her attention to it.

That worked well. She then focused on her family. The tears, however, didn’t stop, but they were now tears of joy. The sitter’s arrival distracted her again. The tears stopped. I told her I would be going to Rotary. She didn’t want me to leave. When I told her that Cindy would take her to lunch and that I would be back later, she was fine.

Kate has continues to pull her hair whenever she lies down. She often talks to me about how much she is accomplishing by doing this. For the first time, she explained that she was “getting all the thingies out.” I asked if she thought they were alive. She said, “I guess.” This is similar to her feeling that she has “bugs” in her teeth and on her body, especially between her toes.

As I have said before, life is different now.

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Visits with Nashville Friends

The recognition that Kate is now entering the last stage of her Alzheimer’s motivates me to do what I can to maintain our longstanding friendships with out-of-town friends. With that in mind, Saturday we drove to Nashville to visit Ann and Jeff Davis. Our past visit had been a good one, and I was eager to see how this one would go. Although she didn’t remember them before our arrival, Kate accepted the fact that we were going to see them without any reluctance at all. A couple of times on the way (and after I had mentioned our visit again) she did ask me to remind her of who they were. She was never straight on that.

As on our previous trip, she was immediately taken with the flowers outside. Ann saw us and came out to greet us. Our greeting was as natural as ever. I think Kate felt completely at ease. We went to their sun room where we enjoyed catching up with them. Since our last visit, they had taken a Danube River cruise and also made a trip to Mexico for a Spanish immersion course. Our conversation was lively, and the two hours we spent with them went quickly.

Kate was less talkative this time. Some of that may have been because the rest of us talked so much. I know she could not have followed everything we said. Throughout our visit, I was concerned that she was uncomfortable. It was a surprise when we got in the car to hear her say she had enjoyed the visit. She didn’t say anything that would have given me the idea that she was ignored or bored.

My own reading of the situation is that she was confused by our conversation and may have been uncomfortable. She chose to remove herself from it, an easy way to adapt to a challenging situation. I suspect this is something that I am more likely to see in the future. It reminds me of my mom when she and dad were with us in any group. She was very quiet.

Our visit does make me think about ways that I could have brought Kate into the conversation. Much of our conversation related to our past experiences, something that is impossible for her to handle. She does, however, retain her feelings. She could talk about her feelings for her family, especially her family. She also retains a strong sense of social justice and the fact so many people live in underprivileged conditions. These are things that are easy for the two of us to discuss. It seems like it might be more contrived in a typical social get together like the one on Saturday. I am going to think about creative ways in which I might encourage at least some conversation on topics that we could all appreciate.

Staying overnight in Nashville has worked out well for us. We had a nice dinner the night before, and Kate was able to sleep late before our going to lunch and then visiting our friend Ellen at her memory care facility. Our visits with her continue to be challenging. We understood very little of what she said. In addition, her memory is also declining. Her daughter told me to ask about Ellen’s visit from her son’s family the previous weekend. They live out of state and don’t get to visit very often. When I asked, Ellen didn’t remember their coming at all.

A few weeks ago, we saw a woman from the church where Ellen directed the choir for forty years. She told us about several videos of her daughter singing solos with the choir. She had posted on YouTube. I played them for Ellen. That was a treat for her and for us.

For the third time in a row, we were there for the “music lady” who comes to the facility about twice a month. She plays the piano and sings and invites audience participation. The residents love her. I can see why. Kate and I enjoy her as well. Kate seemed a little more controlled in her expression of enthusiasm than the first time we were there, but she danced and sang a little as well as clapping her hands and swinging her arms with the music. She was enjoying herself so much that we stayed thirty minutes longer than I intended.

I feel good that we can still have weekends with visits like this at this point in our journey and plan to keep going as long as we can.

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Transitioning from Husband to Helper

Kate surprised me yesterday when she got up early again. I reached her as she sat on the side of the bed. I asked if she was getting up. She said, “I don’t know.” We chatted briefly, and then I asked if she would like to get up. Again, she didn’t know. She said, “What do you think I should do?” I told her I thought it would be good for her to get up and take a shower. She asked where the bathroom was. I told her I would show her.

On the way she asked, “Who are you?” I told her I was Richard and could help her with anything she needed. She said, “You really seem to know your way around.” I turned on the shower and showed her the soap. As she got in the shower, she asked who I was. I said, “I am Richard, and I am your helper.” She asked what I did before becoming her helper. I told her I was retired. She said, “From what?” I told her I had been in the market research business. She said, “What’s that?” I explained briefly. As I closed the shower door, she thanked me. It didn’t sound the way she would have said it if she realized I was her husband. It was more like what you would expect if she thought I was a friend or hired helper. After her shower, she walked a few steps to the bedroom. I told her I would get an extra towel and help dry her. She said, “You really know everything.”

It wasn’t long before she wanted to lie down again. I started to leave for the kitchen. She said, “Why don’t you stay right here?” I said, “Would you feel better if I stayed with you?” She said she would, and I brought my laptop back to the bedroom. About thirty minutes later, she wanted to get up.

Once she was dressed, she wanted her shoes and socks. I picked them up from the floor near her feet. She said, “You think of everything.” Then she asked where I live. I said, “I live right here with you.”

Gradually she is failing to recognize me as her husband. I haven’t reached the stage of never telling her, but I am gradually changing with her. My obvious role is that of helper. I don’t think that’s a bad way for her to think of me.

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I can’t prevent attacks of anxiety, but they don’t last.

When I went to the bedroom to wake Kate yesterday, I found that she was having another anxiety attack. She was frightened and looking around the room for something that seemed familiar. I recognized the problem without her saying anything. I said, “I’m sorry I didn’t know you were already awake. I’d like to help you if I can.” She said, “Where is my maybee?” I told her I didn’t understand. She realized she wasn’t using the right word and tried again. Then she said, “My mother.” I said, “I can tell you about your mother.” She said, “Do I have a mother? I want my mother.”

We talked a few minutes about her mother. Then she wanted to know where her clothes were. I brought her clothes to her and told her I would help her dress. I suggested that she first go to the bathroom. As we walked to the bathroom, she asked again about her clothes and said, “I see other people, and they all have clothes on. I want my clothes.” I said, “You are right. You’ll want your clothes when we go outside.” She said, “See. I’m smart.”

This was one of the many times I wish that I had recorded or could remember exactly what she said. I can only try to capture the sense of what happened. It is not unusual for her to tell me she is smart. Although sometimes she makes it clear that she wants me to understand that, I believe she is also telling herself that she is smart even though she recognizes her problems. In this particular conversation she commented on understanding a word I had used and also one that she had used herself. I don’t recall either one, but she said, “See, I remembered that.” She was also proud that she put her top on the right way.

When she was dressed, I told her I wanted to take her to lunch. She said, “I want to go home.” She says this occasionally when she wakes in the morning. I usually tell her she is at home, and she accepts that. Sometimes she doesn’t believe me, and I try to redirect her attention to something else. In this case, I told her I would take her home, but I wanted to show her something before we left.

Then I went through the same routine I had done the day before with photos of her family. Once again, she noticed Pepper, the ceramic cat, as well as the flowers on the patio. She asked if we could walk outside to get a better look. We took a few minutes to do that and then left for lunch. She no longer showed any signs of anxiety. She didn’t, however, know who I was. When she was dressing, she asked if I were her daddy. I told her I wasn’t and that I was her husband. She didn’t believe that. I said, “Let’s just say I’m a friend.” She liked that better.

On the way to lunch, I played an album of music by a group that had played the Four Seasons in Jersey Boys. She enjoyed the music and clapped her hands on her legs and also moved her hands around the way she might have done if she were dancing. She had a good time.

She was talkative at lunch. It wasn’t long before we began to talk about our relationship. She specifically said something about our being married. The rest of the lunch and the day went very well. She showed no anxiety or doubt about me and our relationship. I will say, however, she often slips back and forth between knowing our relationship and not. I don’t quiz her all the time to know when she knows and doesn’t know. I almost always make a judgment based on the way she relates to me. During the afternoon and evening, it seemed like she did know me as her husband. Once again, we had moved from a moment of anxiety to feeling at ease. This reinforces my belief that she just needs to be exposed to things with which she has been familiar. Then the anxiety disappears.

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Is our glass “half-full” or is it “half-empty”?

When I began this journal (now a blog), I wanted to create an account of our lives since Kate’s diagnosis. That is the reason for my providing so much information about our daily activities. In a way, I wanted my posts to paint an accurate picture of the struggles we have faced and how we have adapted. Looking back, I think I was expecting more problems to deal with and fewer moments of happiness. As it has turned out, it is the “Happy Moments” rather than struggles that have filled our lives.

I often worry that whatever I say will lead some to believe that our lives are either “good” or “bad.” The reality is that our lives are a complicated mixture of both. Even now, the good far outweighs the bad. I do understand, however, that the way I have adapted to Kate’s changes permits me to see it that way. If I were looking at our lives today through the lens of 2011, I would be depressed. I am not depressed today. I have learned to appreciate many little things that I previously would have thought either insignificant or sad.

Let me give you a few examples of happy moments we have shared in the past few days. As we walked out of the bedroom the other day, she noticed a picture of our daughter, Jesse, in her wedding dress. It sits on the dresser, and Kate frequently stops to look at it. During the past two or three years, I don’t ever recall her recognizing that it is Jesse, but that doesn’t stop her from appreciating it. When I told her it was her daughter, she was moved to tears. She commented on the smile and her eyes, something that draws her attention in all photos. She asked her name. After I told her, she wanted to know more.

We spent at least five minutes or more looking at the picture. Then I told her we had a picture of Jesse’s twin boys in the family room and motioned her to follow me. This is another of her favorite pictures. She was thrilled to see it. She wanted to know their names. She got the impression they were her children. I told her they were Jesse’s boys. Then she wanted to know about their father. It wasn’t long before I was giving her far more information than she could digest. We went away without her ever having the understanding she wanted, but she had enjoyed herself. And I loved showing her the pictures. We do this regularly now. It’s not something we did much before, but it means much more to her now. I get a special kick out of her interpretation of the personal qualities of Jesse and the boys.

As we walked through the family room, she was captivated by the beauty of the flowering plants on the patio and the trees behind our property. She said hello to the ceramic cat that sits on the floor before we enter the kitchen. She looked at the photos of our son and her father that are also part of her daily ritual. This is always a good way to start the day.

During dinner, she said she wanted to tell me something. She said, “I know how much you do for me, and I want to thank you.” This began a series of comments that continued when we got in the car after dinner. She conveyed that she couldn’t live without me. She said some nice things about me to our server. As we left the restaurant, she said, “I wanted to tell you something else. I don’t know where all this is going. I wonder if we should get married.” I said, “I would love to marry you.” She said, “You would? That makes me happy.” I walked around my side of the car. We didn’t say anything more about marriage, but we talked about our relationship all the way home.

These are just a few of the many experiences we have on a daily basis. I would been sad if they had occurred eight years ago, but I have always wanted her to be happy. That is especially true now, and she is almost always happy. What I didn’t know then that I know now is that happiness is possible even after memory disappears, and I don’t have to look far to find things that make her happy.

I wish Kate had all of her rational abilities back – her memory for people, places, events and how to accomplish the many daily tasks of living. That’s not going to happen. From that standpoint, life is not going well for us now. On the other hand, being happy is of primary importance for both of us, so Kate and I would say that our glasses are still quite full.

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Early Morning Conversation

Kate wanted to go to the bathroom just before 6:00 this morning. As I took her back to bed, she said, “You’re a nice guy. What’s your name?” I said, “Richard.” I helped her in the bed. She said, “I want to thank you. You’re a really nice guy.” I said, “That’s because you’re a really nice gal. I love you.” She said, “I love you too. We’re a good ‘two.’ (I think she meant team. That is something we often say.) <pause> What’s your name?” I said, “Richard.” She said, “What’s my name?”

No wonder I want to do the best I can for her. We love each other, and she needs me.

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Yesterday was a good day.

After the challenges of the past week, I’m glad to report that Kate didn’t have any signs of anxiety yesterday. She wanted to sleep longer when I got her up but was cooperative. She was happy to see the sitter and didn’t give any indication that she was sorry for me to leave. She also got along well without me while I was away.

The only problem of the day involved her iPad. That is one I don’t think I will solve. This is a direct result of the progression of her Alzheimer’s. I just hope she will be able to continue for a little longer.