Kate and I had an unusually good time at lunch yesterday. I commented on how relaxed she looked. She said she was, and I told her I was as well. Then I said, “I think that’s because we didn’t have to rush to get here.” I went on to say that I like to be punctual and am least relaxed when I am pressed for time. I don’t remember exactly what she said, but here is the meaning. “I like it that when you are in a hurry. You try not to make me think you are.” She knows me pretty well. Alzheimer’s hasn’t taken that away.
When Kate got in the shower yesterday morning, she got upset. At first, she was using the soap. I told her to use it. Then she got very teary and said , “Will you still love me?” I told her I loved her from the day the day we met and would always love her. She gradually calmed down .
As I was helping her into the car after lunch, she said she wanted to tell me something. Then she said, “You have told me a lot of things, but I know I won’t remember them. Promise me you won’t be mad at me?” I assured her that I wouldn’t get mad and was happy to tell her as many times as she needs to ask. She said she knew I wouldn’t but some people would. She said, “I know you must get tired of me asking you all the time.” I found her concern about my reaction strange. I felt almost like she was afraid of me. It was hard for me to imagine that because it is so out of keeping with our relationship.
She went on to say something else but stumbled on the words. My interpretation was that she couldn’t understand why she has so many problems. I don’t know that I am correct though I do know this is an ongoing concern of hers. Earlier at Panera she wondered why she does so many “stupid things” when she is so smart. Periodically she talks about being smart. I think that is because she is aware of so many things she does that seem to contradict that. I don’t usually feel sad, but this is one of the things that does it. I don’t like to see her suffer.
Yesterday was another of those days when I noticed more signs of Kate’s decline. She was especially dependent and cooperative in getting up and dressing. She was so cooperative that she was dressed and ready for the sitter in half the time or less. That turned out to be good because it enabled us to make a quick trip to Applebee’s for a gift card that the sitter uses to pay for Kate’s meal each Monday.
It was also a morning when she didn’t recognize me as her husband. She didn’t act surprised when I told her. She also didn’t remember her family. As we left the bedroom, I gave her the usual tour of the family photos in the hallway. We also looked at a few other pictures in the family room. As we went to the car, she became teary and thanked me for helping her. She tried to say more, but the words wouldn’t come to her. She suggested that I could say them better. I don’t remember exactly what I said, but it was something like, “You want me to know how much you appreciate my help.” She nodded. She started to cry, and we stood a moment in the garage hugging each other. These moments are not unusual. They are times when our hugs communicate our strong feelings for each other, but I always wonder what else they might say. I know that on my part they say, “I know our time is running out. I want you to know that I love you and will care for you all the way.” Is she thinking about the seriousness of her own condition? That she is worried? That she is losing her ability to express her feelings? That she is afraid of the future? I just don’t know.
When Cindy arrived, I told Kate that the two of them would be going to lunch and that I was going to Rotary. She didn’t look uneasy about that, but she did say, “Why can’t we go to lunch together?” Then she gave me a look that suggested she thought I was deserting her. I walked over and gave her a hug and said, “I love you.” She said, “I love you too.”
After getting home, we spent a few minutes looking at one of her photo books. It wasn’t long, however, before she said she was tired and wanted to rest. I left the sofa to her and took a seat in a chair across from her. I put on an album of Barbra Streisand favorites. In a little while, I heard her whimpering. I told her that if I had known the music would make her sad, I would have played something else. She said, “No, I like it.” She wanted me to come back to the sofa and sit with her. We sat there enjoying the music for another fifteen minutes until it was time for dinner.
Today is starting the same way. While working on this post at 8:00 this morning, I saw that she was sitting up in bed. I went back to her. She seemed to recognize me, but nothing was said to make me sure. I know that she was quite comfortable with me. I said, “I bet you wanted to go to the bathroom.” She said, “Where is it?” I said, “I’ll show you.” I helped her up. She didn’t try to assert her independence. She extended her hands for me to assist her. She continued to hold my hand on the way to the bathroom. She said, “You know, I am sure glad you’re here.” I told her I was glad too.
When she finished washing her hands (arms and face) and brushing her teeth, she looked around for a towel but didn’t see it. I took it from the towel rack beside her and handed it to her. She said, “I’m glad I have you. You always seem to know what to do and what to say.” Then she said, “What do I do now?” I told her it was still early and that she could go back to bed. She asked me to show her where to go and asked me to take her hand.
After she had gotten into bed, I told her I would be in the kitchen and to call me if she needed anything else. She appeared to be uneasy about that and asked where the kitchen was. I asked if she would like me to stay with her. She said she would, so I went to the kitchen and brought my laptop. When I got back, she said, “It means a lot to me that you’re here.” I said, “I think we were meant to be together.” She said, “Me, too.” She followed that with, “What’s your name?” I told her, and then she asked her name. A few minutes later, she asked my name again and where we were.
It could be another day of insecurity, but based on previous experience, she could be quite different when she finally gets up. I am getting a better appreciation of what I have heard from other caregivers about the difficulty predicting what comes next.
Last night was Opera Thursday at Casa Bella. As I have said before, their music nights have been very important to us both from an entertainment standpoint as well as socially. Recently, however, I have been concerned because we often have six and sometimes eight people at our table. Large groups are difficult for Kate. She does much better when we are with one other couple. That has led me to think about the possibility of our moving to a table by ourselves. I haven’t mentioned that to the owner of the restaurant, and the last time we were there everything was fine. Last night was even better.
Our seating arrangement varies a little from night to night depending on the number of people at the table. The men have followed an unspoken rule that our wives sit on the side of the table facing the singers while we have our backs to them. I started to seat Kate where she sits most often. She asked where I was going to sit. I pointed to the seat across from hers and said, “I’ll be right there across from you.” She said, “I want you to sit beside me.” This is in keeping with her increasing insecurity and desire to be with me and to hold my hand. Not wanting to take the seat of the woman who would be joining us later, I helped her into the seat beside me on the other side of the table. That meant she couldn’t easily see the singers, I felt the priority was being closer together. That turned out to be a good thing for two reasons.
First, the son of the couple we always sit with was there. He took a seat at the end of the table with his mother on his right and Kate on his left. His father took the seat across from me. Although Kate can never remember the couple, she always feels comfortable with them. They are always able to put her at ease. This made for a good social experience for her.
The second reason the seating worked out well related to Kate’s response to the music. As I have noted a number of times, her emotions are exaggerated more than in the past. The music was especially good, and Kate responded accordingly. Most of the evening she didn’t respond audibly the way she sometimes does, but she was visibly moved.
The most dramatic moment came during the last song of the last set when they often sing a few ballads or showtunes. Last night they ended with “For Good” from Wicked. In the musical, this is a duet sung by Glinda and Elphaba who tell each other their lives have been changed for good by the other.
Although Kate has difficulty following conversations, I am often surprised when she responds to specific words or phrases in songs. She picks up far more than I expect. In this case, I believe she was moved by both the music and the lyrics. She began to whimper very soon and held my hand throughout the song. During the last couple of stanzas, she was moved even more. As the song ended, she put her head on my shoulder and her arm around my neck and broke into a cry. She wasn’t loud, but people nearby would have easily noticed. As we hugged, I saw a couple at the table beside us who were looking on. They are aware of Kate’s diagnosis and have been very compassionate in their response to her. When the program ended, they came over and gave her a hug.
For me it was also an emotional moment. I can’t know exactly what she was thinking. I do know that she recognizes she has “a problem” and that she needs me. I know she understands certain words and phrases from songs. Did she understand the words of the song and draw a connection to our relationship? Was she simply moved by the music and not the lyrics? I only know it was an very emotional moment.
I don’t think I am alone among caregivers when I wonder exactly what Kate knows. By now I realize that she knows very little when it comes to her rational thought/abilities. Many times I have mentioned how often she can’t remember my name or our relationship. I take comfort in the fact that her intuitive thought/abilities are still working well. Through them she almost always recognizes me as someone very familiar and trusting.
For over a year, I have also realized that she no longer remembers that she has Alzheimer’s. At first, I wondered if I should tell her and, on one occasion, I did remind her. She hadn’t remembered, but she quickly forgot, and I haven’t said anything since. I haven’t see anything to be gained by it.
She has always recognized that she has problems and needs my help. It was only a year ago in July that she began to experience anxiety or panic over moments when she didn’t seem to know anything – where she was, who she is, who she was with. Within the past few weeks, I have sensed that she might believe that her problems were of a more serious nature, not just a periodic lapse of memory. Over the past week or two, she has said and done things that lead me to think that she knows she is declining and is afraid of what lies ahead.
Sometime in the past day and again today at lunch I felt strongly that she recognizes that through her intuitive thought. She was awake when I went to get her up for lunch. She didn’t seem frightened, but she was uneasy and insecure. She was especially eager for me to help her with everything. That follows signs of increasing insecurity and appreciation for my helping her during recent weeks.
At lunch, I said something about her mother and father. She wanted to know their names and something about them. When I said that her father was one of eight children, she said, “I know why.” I said, “Why?” She said, “Because in those days, they needed more children.” I was surprised that she came up with this and said, “You know, you are smart.” She beamed and said, “I think so too.” It was as though she was relieved to have me say that. Off and on she has said she is smart, but that has been more frequent recently. I have felt she was trying to convince herself that is true. It would be easy to think she is not given how poor her memory is and how little she is able to do.
During our conversation, she stopped and said, “I want to tell you something.” She looked very serious. I leaned closer to her. She said, “I know that you will always take care of me.” I said, “I will. You can count on that.” Her eyes filled with tears, and she said, “Thank you. I know you will.” I felt we were thinking similar thoughts about the future. There is no way I can be sure, but the look on her face made me think that.
I told her I loved her, and she said the same about me. We began to talk about our marriage, and I mentioned our children. She said, “Who are they?” I told her and she asked if I had a picture. I pulled out my phone and showed her pictures of Jesse and Kevin. She said, “Do you think they love us?” I said, “I know they do?” She choked back her tears.
In a few minutes, we got up to leave. She started whimpering and was loud enough that I saw people at two different tables look up. On the way to the exit she continued to cry softly. We stopped right there in the dining room and hugged for a moment and then went on.
I don’t know precisely what she is thinking, but she seems very concerned and doesn’t see a happy ending. I am glad she still knows that I will be with her all the way.
I am never sure what Kate will be like when she wakes in the morning. She is usually in a good humor, but she is often confused and sometimes irritable. Today was an interesting mix of tenderness and confusion. The prelude to a touching conversation occurred when I noticed on the video cam that she was sitting up in bed. I went to the bedroom. I found that she wanted to go to the bathroom, but she didn’t want my help. I think it was one of those rare times when she didn’t recognize me at all. I pointed out the bathroom and left to watch on the video. She made her way to the bathroom. I went back when I saw her come out. After she was back in bed, I told her I would be in the kitchen and to call me if she needed anything. She asked my name. I told her, and she tried to repeat it. We went through this routine several times. Before I left, I said, “If you don’t remember my name, just say ‘Hey.’”
An hour later, I heard a very soft “Hello.” Before I reached her, I heard it again. By that time, I was at the door to the bedroom and said, “Did I hear you calling for me?” She nodded. She smiled, and I thought this was one of those mornings when she clearly knew our relationship. She said, “I love you.” I took that as confirmation of my suspicion.
I was wrong. I sat down on the bed beside her. She said, “I want to thank you for taking such good care of me.” I said, “That’s because I love you.” She said, “I love you.” She paused a moment and said, “What’s your name?” Before I could say anything, she recognized how strange that sounded. She laughed and said, “I know that sounds funny.”
That began a 15-20 minute conversation a portion of which I recorded on my phone. The gist of the conversation was a continuation of her expression of appreciation for my caring for her as well as how she feels about me. That continued to be mixed with asking my name. She also referred to me as her daddy. Once or twice she asked if I were. The first time I hesitated and then told her I wasn’t. She was disappointed. I said, “You can think of me as your daddy.” She liked that and continued to call me her daddy, but she also talked about loving me in a way that was more like she thought of me as her husband. Of all the things she said, I was struck by one particular thing. She looked teary and said, “I don’t know what’s wrong with me, but I know you will take care of me.” I assured her that I would.
I can’t tell you how many times I have wondered to what extent she grasps her problem. I am positive she doesn’t remember that she has Alzheimer’s, but she frequently expresses a concern about herself. She knows that something is wrong. Her comment this morning suggests to me that she thinks it’s something serious.
Last night, Kate and I ate a sandwich at Panera. As we prepared to return home, she wanted to take her cup of iced tea with her. She started to pick it up when she asked if I would carry it for her. She said, “I don’t want to spill it.” I told her I didn’t think she would spill it but that I would be glad to carry it for her. She thanked me and said, “I just don’t want to do anything stupid.” I tried to assure her she wouldn’t, but she wouldn’t believe me.
I put her drink in the cup holder between my seat and hers. Before I backed out of the parking space, she wanted a sip of tea. She started to pick up the cup but decided against it. Again she mentioned that she didn’t want to do anything stupid. I said, “You won’t do anything stupid.” She said, “I do all the time.” Once again, I tried to boost her confidence. She dismissed what I said and said, “I could think of some things, but I can’t remember them right now.”
When we got home, she continued to be concerned about doing “stupid things.” She wanted me to tell her everything to do or, at least, ask my permission to do things like taking her shoes off and lying down on the sofa. I told her I was going to brush my teeth. She didn’t want me to leave her and said, “Just so that I can see you.” I told her I would get my toothbrush and bring it back to the family room. When I got to the bathroom, I just quickly brushed and went back to her. She hadn’t worried, but she mentioned that she felt better when I am with her, that I keep her from doing stupid things.
Because her memory is so poor it is easy to think that she doesn’t understand anything about what she is doing. This particular experience is just one of many that remind me that she understands a lot more than it may appear. I don’t think it is something that lingers. She doesn’t think about it all the time, but she definitely has some knowledge of how hard it is for her to do the simplest things. She is right that she is inept at doing many things that were previously easy tasks for her. Now everything is a challenge. The other night at Casa Bella she knocked over a full glass of water. I am sure she was embarrassed. I think the people at the other end thought I had done it, and I was glad to take the blame. In fact, it could have easily been me, but it is the kind of thing that piles on top of other experiences that let her know she does not function very well at all.
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.
Kate had another anxiety attack yesterday. This time it occurred in connection with a different kind of feeling. She wasn’t frightened by not having any memory. She was worried about being separated from me while the sitter was here. Here is the way the day unfolded.
We had a good morning. Unlike five other days in the past week, Kate showed no signs of anxiety at all. She wasn’t eager to get up for lunch, but she did so without any resistance. She was very comfortable with me. I like to think that she knew my name and relationship, but she didn’t say anything specific to confirm my suspicion. We had a nice lunch and were able to get back home in plenty of time to meet our sitter with ten minutes to spare. As I left, I told her I was going to the Y. She didn’t express any reservations about my leaving. She was tired and was resting on the sofa in the family room.
When I returned home almost four hours later, I encountered a very different situation. I heard Mary say, “There he is.” Kate said, “Where?” Then I walked into the room. Kate was seated on the sofa. She had a very worried look on her face. Mary said, “She’s been stressed.” When Kate saw me, she gave a big sigh of relief. I walked over to her. Even though she was relieved to see me, she remained upset. She said, “Are you my one?” She’s never referred to me that way, but I assumed that the word “husband” or “friend” wouldn’t come to her. I said, “I am your one.” She said, “I didn’t know where you were? I was worried.” She was more emotional than she had been when she experienced her attacks earlier in the week. I sat down beside her and tried to console her. She was appreciative, but it took her a long time to calm down. In fact, she repeatedly said, “I couldn’t imagine where you were. I knew you wouldn’t leave me.” It was thirty minutes later before she was calm again. I was surprised that she could retain a memory of her feelings for such a long time.
The rest of the evening was uneventful. As I have reflected on a number of recent experiences, I see a common thread. Her intuitive side is more “alive” now than in the past. Her feelings don’t seem to be different in kind than they were in the past, just more intense. I see that in her appreciation of music and beauty. It is very evident in her reaction to sudden noises, especially those that occur when we are in restaurants. The screams of babies and the noises of dishes as they are removed from tables by the wait staff cause her to make louder audible responses than ever before. She complains about the brightness of the sun when we walk from the parking lot into a restaurant and back again. She is bothered more than usual by the heat anytime she is outside. She is irritated by waiting. That happens at restaurants and also at the doctor’s office the other day. At several of our recent music nights at Casa Bella, she has been uneasy when seated at a table with more people than usual. She is also more easily irritated by things I say or do. She is very sensitive.
I am now connecting her anxiety attacks of this week as part of the same pattern. The loss of her rational abilities leaves her with only her feelings. While that is what provides her with a great deal of pleasure, it also brings with it a greater amount of pain than it would have in the past.
This is just one more thing that I didn’t fully anticipate. I have always tried to keep her safe and happy. This change is one that requires me to be more attentive to those things that are uncomfortable for her and minimize them as much as I can. I definitely need to work with her sitters to enlist their help when I am away from the house.
After dinner two nights ago, Kate took a seat with her iPad in the family room while I watered a few plants on the patio. When I came back in, she had closed the iPad and was leafing through a magazine. She looked disturbed, and I asked her about it.
She said she didn’t want to talk about it then, but she was facing a decision. I asked if she could just tell me what the decision was. She said she wasn’t ready but that she would like to talk with me later. I held back a moment. She continued to sit in her chair with her head to one side and resting on her hand. She was very absorbed in thought.
I tried very carefully not to push her, but I repeated how much I would like to be of help. Again, I asked if she could just tell me what kind of decision she was trying to make. Gradually, she started talking. She began by saying, “I really want to help people.” That led her story to unfold, but not in an orderly fashion nor could I understand everything.
I quickly realized that she had imagined having an experience with someone. She told me she “knows” a woman who is trying to help children showing signs of getting into trouble. I wasn’t at all surprised about the expression of her desire to help people, but I was impressed with the thinking she was doing about the problem of helping the woman and the children and how to address it most effectively. She said it was not an easy thing to do and would require a lot of coordination. She wanted us to think about people we could bring in to assist in the planning and implementation of the program. She was also concerned about the time frame. She said there is a lot of planning that needs to be done before taking any action; however, she felt that there could be a danger of not acting as quickly as we need to. We (she) talked about twenty minutes before she seemed to slow up. I told her she seemed to have a grasp of the situation and the challenges she would face. I suggested that she might think overnight on what we had discussed and just relax a while before going to bed. She agreed, and that ended the conversation. As I suspected at the time, it seemed to be forgotten yesterday if it wasn’t before she was asleep that night.
The experience made me think of something that has crossed my mind before. She recognizes how little she is able to do on her own. Occasionally, she says something that indicates a desire to do more to be useful rather than just working on her iPad. Sometimes she helps me with little things like making up the bed. It would be a far cry from launching the kind of program she talked about the other night, but I could enlist her help with other things like the laundry and other household chores. I have often thought of some type of volunteer work, but most of those opportunities require someone that can be counted on to be consistent in showing up. That could be a problem. I’m going to continue thinking about possibilities.