Tender Moments at Stage 7

Yesterday, I worked on a draft of a new post focusing on Kate at this stage of her Alzheimer’s. I haven’t finished, but we had an experience during the afternoon that I decided to tell you about first.

I often think of the fact that our relationship has changed so radically over the course of Kate’s Alzheimer’s. Many things that were a regular part of our lives are now gone, but love remains and makes itself known to each of us every day. One of the changes is that she no longer does things with the deliberate intent of making me feel happy.

When she does express her affection for me, and I don’t believe a day passes without her doing so, it is a simple, often non-verbal, expression of her love. That would not be enough for some people, but it is for me. The impact of simply reaching for my hand has great impact, something that would not have had the same value early in our relationship.

We had one of those experiences yesterday. The caregiver and I started to take her out for a stroll around the hallways and to get a milkshake when she became upset. She refused to put her feet on the footrests of the wheelchair. That not only makes it harder to push her, it runs the risk of twisting her feet and legs as she drags them on the floor. I suggested to the caregiver that we back off, give up the idea of going out, and just focus on calming her. She was sulking as we went out on the balcony.

I put on some music that I thought might calm her. Then I took her hand and spoke to her very gently. I expressed my love for her and talked about our falling in love in college, getting married and having children. I spent at least 30 minutes doing this without her displaying any change in mood. Then I said something she thought was funny. She smiled and laughed. I said, “I guess you think I’m a silly guy.” She responded quickly and firmly with a “No.” That opened the door for me to mention how much I like her smile.

We sat quietly for a few minutes while the music played. Then she looked at me while pulling her hands together and held them close to her chest as though she were trying to tell me something. She followed that by extending her hand to me. I reached out to take it, and she pulled it to her chest and held it tightly. We looked in each other’s eyes, and I said, “I love you. I always have. I always will.” It was a tender, yes, romantic moment, for both of us.

Feeling Grateful in the New Year

Over the past year, I’ve experienced a number of different emotions, most of the them related directly or indirectly to the progression of Kate’s Alzheimer’s, but some, like COVID, have occurred for other reasons. The feeling I have right now is a sense of gratitude. Kate and I have been on the receiving end of the goodness of people throughout the past year. That has been especially so during our personal experience with the virus and its aftereffects.

It marked the first time I felt a critical and immediate need for help, and everyone responded in ways that exceeded my expectations. Much of that came from family and friends who have given me encouragement via phone calls, cards, and email. I’ve been particularly impressed with our healthcare professionals. They have played an enormous role since the middle of November when we tested positive.

I’ve always felt good about the geriatric practice with which Kate’s physician is associated. I kept her doctor, nurse, and social worker busy responding to my questions. They went out of their way to address the various issues we have faced, and I continue to rely heavily on them.

Although unable to be with Kate in the hospital, I had several phone conversations with her nurses and doctors each day. They were responsive to all my inquiries and gave me a sense that they were giving Kate the very best care. They were also sensitive to my own needs.

It was only after Kate’s return home that I had direct contact with anyone. They include the Home Health personnel (nurses, physical therapists, and a social worker). I’ve had confidence in each one. They are all experienced in their respective areas and possess the sensitivity one expects from someone who has chosen a career caring for others.

My closest contact, however, has been with the caregivers who have been here every day since Kate’s return home. Watching and working with them closely has confirmed what I thought when Kate entered the hospital; I was facing a caregiving task that I couldn’t handle by myself.

I like every person our two agencies have provided. We’ve had seven or eight new caregivers. Only one person was with us before. Their training and experience have enabled them to address all of Kate’s needs. I’ve learned a lot from them. When you add their compassionate care to their clinical strengths, they are an excellent team.

I should make a special point concerning how hard they work, not just for us but for the others they serve when they are not here. I believe all but one of them works at least one other job in addition to their work with the agency that provides them to us. It is not unusual for the Monday and Wednesday caregiver to come to us after working all night and/or leaving us for another all-nighter.

I was especially impressed with someone who was here last week. She has undergone open heart surgery, has MS, and has had a brain tumor. She has four different jobs. In addition, she has two children, one who is in college. Despite the difficulties she has faced, she is very upbeat and grateful. I’m sure she is an inspiration to everyone who knows her.

Emotional Times

I always assumed that the last stage of Kate’s Alzheimer’s would involve sadness for me. That is happening now although it is only periodic. It is minimized by the many happy moments we continue to experience. In addition, there are times for which neither happy nor sad seems to be the right word. Those are tender moments when each of us feels a deep sense of love for the other as well as (at least on my part) the recognition that time is running out.

Sad moments for me occur when Kate is disturbed by her lack of memory and any sense of where she is or what she is supposed to do. Most of these experiences are in the morning and have become almost routine. I know how to comfort her, and most of them are not as serious as others. For that reason, I don’t usually feel sad.

Several days ago, she had an experience that was very upsetting to her and to me. It was definitely a sad moment and not one that happened in the morning. She had finished resting in the family room. I looked over at her and saw that her eyes were open. The expression on her face was one of concern. I asked if I could help her. She said yes, and I walked over to her. She wanted to go to the bathroom.

On the way, she continued to act as though something was troubling her. What I initially saw as concern wasn’t about getting to the bathroom. While seated on the toilet, she tilted her head down and held it with her hands. I don’t remember exactly what she said, but she was in tears and distraught. She said, “I feel like I am not alive. I don’t know anything.”

This was as sad a moment as I have felt. I focused on comforting her. I said, “I know you’re not yourself right now, but I want you to know I am with you and will always be with you.” When we finished in the bathroom, I took her to the family room where we took a seat on the sofa. I told her I had something I wanted to show her and picked up a three-ring binder of information about her and her family. I reminded her that she frequently asks me to “write that down for the book” she plans to write about her family and told her that the binder contained some of the information she had wanted.

She responded quickly. Offering comfort and diverting her attention are a powerful combination. I don’t know that it will always work, but, so far, it has.

Saturday morning, we shared a tender moment. I put on a Judy Collins album before trying to get her up. It was still playing when we got to the kitchen to take her morning pills before leaving for lunch. As usual, my focus was seeing that she took her medicine and wasn’t thinking about the music. Collins was singing “Amazing Grace.” The music caught Kate’s attention. She stopped taking her pills and commented on how beautiful it was. With tears in her eyes, she grasped my hand and held it tightly. I put my arms around her. She began to cry, and so did I. We stood there, arms wrapped around each other and enjoyed the moment.

As I reflect, I don’t believe either of us was simply responding to the music. Like many people, we love the song, but we have never reacted to it this way. I believe it was a catalyst that heightened our existing emotions. Music can do that. That may be especially true for us because we have devoted so much of our attention to it since Kate’s diagnosis.

This an emotional time for us. She is struggling with the symptoms of her Alzheimer’s. It is frightening not to know anything. It’s also an emotional time for me. I’m happy when she is happy, but the corollary is that I suffer when she suffers. In addition, I experience something she can’t. Although I can’t predict the future, but I am very mindful that our time together is rapidly diminishing. Music can move us anytime, but it is especially powerful when our emotions are on “high alert” as they are now. I am sure it will continue to bring us comfort in the days ahead.

An Example of Kate’s Insight

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.

Concerned About Not Doing What She Believes She Should

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.

Feelings of Insecurity and Appreciation

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.

A Successful Evening at Casa Bella with a Emotional Finale

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.

Does she know what lies ahead?

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.

A Touching Morning Conversation

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.

Kate’s Insecurity

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.