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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.

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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.

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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.

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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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Trying to Understand Kate’s Expressions of Her Feelings

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.

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Another Interesting Conversation

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.

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Thoughts about Anticipatory Grief

Just about everyone has some awareness of grief that occurs after death of a family member or friend. Much has been written about it, but most of us don’t think of anticipatory grief that occurs before death. There seems to be agreement that not everyone experiences this kind of grief, and I imagine that is a difficult issue to measure. It’s something many people have never thought about, and, thus, are not likely to recognize or say they are experiencing or have experienced it.

As you might expect, I am in touch with a lot of caregivers of people with dementia. Anticipatory grief is a topic that comes up periodically. It is easy to see how the concept would be relevant for this group because of the lengthy span of time between diagnosis and death. Many people view the diagnosis as a “death sentence.” Since there is no current cure for the disease, I understand this thinking. My personal preference, however, has been to focus on the positive side and concentrate on the value of the remaining time that Kate and I have to enjoy life and each other. Having said that, I must admit that the diagnosis did serve as a wake-up call that life does not go on forever. We know this anyway, but the diagnosis of dementia is usually a significant signal that death is sooner than we had expected.

Lynne Eldridge, M.D. (https://www.verywellhealth.com/understanding-anticipatory-grief-and-symptoms-2248855) talks about the nature of anticipatory grief, and, like most authorities, is careful to acknowledge that “everyone grieves differently.” She suggests that such grief can be like a roller coaster ride with all its ups and downs. It’s not constant. With that in mind, she identifies the following symptoms one might experience.

  • Sadness and tearfulness
  • Fear of death itself and the changes that will accompany it
  • Irritability and anger
  • Loneliness
  • A desire to talk
  • Anxiety,
  • Guilt
  • Intense concern for the person dying
  • Rehearsal of the death – visualizing what your life will be like
  • Physical problems – sleep and memory, and
  • Fear of loss, compassion, and concern among children facing death of a parent

Recently, I have wondered if I’m experiencing this grief and, if not, if and when will it occur. This has led me to think about the symptoms listed above as well as the degree to which I experience them. Here are my thoughts.

I quickly eliminated the following signs: irritability and anger, loneliness, desire to talk, and guilt. I may a bit more irritable because I often feel more rushed than usual. If so, it is minimal, and I don’t feel lonely or guilty at all. I do like to talk, but that was true long before Kate was diagnosed.

I experience each of the remaining symptoms to a greater or lesser degree. Here is how I would rank them in terms of their intensity.

I often feel sadness and occasionally experience tearfulness, especially at services for friends who have died. There have also been a number of moments when I choked up while talking with someone about Kate. This has been true since her diagnosis. As her Alzheimer’s has progressed, I have felt sadness each time we did something that was or I thought would be the last time. That includes our international travel as well as trips to New York City, Chautauqua, and our children’s homes. In addition, my eyes often fill with tears during my happy/sad moments with Kate. One that comes to mind is when she asked, “Would you consider marrying me?” during a conversation at a local restaurant about a year ago, but there have been many others.

The sadness I am talking about is not lasting. It is momentary, but I have sensed a greater degree of sadness recently that relates directly to Kate’s decline over the past few weeks (months?). I have experienced hospice with three of our parents, and my current feelings are more like those except for the clearer reality of impending death associated with their situations. With Kate, I also continue to have uplifting experiences that prevent the sadness from being a problem. Nonetheless, there is a real difference in the way I feel now. I think that relates to some of the other symptoms listed above.

I don’t think the word “fear” best describes my feelings, but I don’t want to face what lies ahead for us. When the time comes, I am sure I will handle the situation as I have done in the past. I think the word “anxiety” is a better word than “fear” to describe my feelings. This seems like a very natural response for a spouse whose loved one is entering this stage.

I often think about life after Kate’s passing. I don’t know how someone in my position could avoid that. This will be the most dramatic change of my life since we married, and it’s a permanent one. At the same time, I know many people, including my father, who adapted well after the loss of a spouse. I believe that I, too, will adapt.

I wake up more often at night and have difficulty getting back to sleep. I also sense that my memory has been affected by the demands of caregiving. To date, neither of these has been a serious problem. I’m not sure what to expect in the future.

When I think of each one of these symptoms, I would say none comes close to the feeling of sadness in terms of intensity. There is no denying, however, that I experience anticipatory grief. The question is “How will I handle it?” I am optimistic, but I also believe it won’t be easy.

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Fading Away

These days I see unexpected changes in Kate’s behavior and mood. In some cases, they are new things. More typically, they are things I have observed before. The difference is that they are becoming more frequent. At dinner last night, we had a conversation about our children and the good times we had had during our marriage. Moments later, she didn’t know my name or that I am her husband. Again, this is not something entirely new. It’s the abruptness with she moves from clarity to confusion.

Last night, I saw a message from a man who felt his wife was fading away. I can relate to that. I have had this sense for years. Now it feels like the end is so much closer, and it is.

The other day before leaving the house for the hair salon, she went to the bathroom. When she came out, she said, “I’ll never do that again.” I don’t know what she was talking about, but she was wiping her hands. Fifteen minutes later at the salon, she asked me if they had a restroom. I told her they did, and she wanted me to take her. She looked a little frightened as we walked through the salon. When I opened the door for her, she said, “You better come with me.” Once inside, she spent her time washing her hands and her arms, taking much longer than I would have thought necessary. I didn’t see why she wanted me with her. I know she has had other experiences when she didn’t know what to do in a restroom. One time she tried to exit through a locked door to a supply room. In that case, our server helped her get to the correct door. Another time she locked herself in and couldn’t unlock the door. The experience at the salon made me suspect she was feeling particularly insecure. It also appears there was some connection with her statement at home that she would “never do that again” and her washing her hands and arms at the salon. Did she accidentally put something on her hands at home that she still needed to get off? I have no idea. I don’t know of anything (like a household cleanser) in the bathroom at home. It’s another mystery.

I see signs of change at home and everywhere we go. She sometimes forgets where her toothpaste and toothbrush are even though I now keep them on the counter in the bathroom where they are quite visible.

At lunch yesterday, I mentioned that we would have pizza last night. She didn’t recognize “pizza.” I gave her a description, and she still had no idea what I was talking about. She picked up a slice of a black olive that was with her meal. She said, “I like this.” I told her it was an olive. That didn’t mean anything to her.

Her dependence on me continues to increase. At lunch, I said something about someone who had died. In a moment, and with a look of concern, she said, “What would happen to me if something happened to you?” I reminded her that my dad had lived to 100 and suggested I might do the same. Her question, however, had a tone of greater concern that deserved a more serious reply. I reminded her that our son is in the elder care business and was quite familiar with all the resources and issues related to seniors. I told her he would step in and care for her and that would mean she would probably move to Texas to be near him. She gave a sigh of relief and said she felt better knowing that. That is just another sign of her awareness of her dependency.

She has always been appreciative of the things I do for her, but she has moments when her expressions are more excessive than before. When we left the hair salon the other day, she said, “You’re a nice guy, a really nice guy, and I mean that.” In the car she said, “You are the best man I know.” Near the house, she said, “Do you know who is most important?” I said, “Who?” She said, “You are.” This was one of those happy/sad moments. I am happy that she feels more secure with me, but I am sad for her to experience the insecurity that makes her need me.

At home we looked through a portion of the “Big Sister” album. She got tired and wanted to rest. While resting on the sofa, she asked, “Where are we right now?” I told her we were in our very own house. She said, “The inside?” She really is fading away now. I don’t know what she will be like in the next few months.

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Interpreting Kate’s Feelings

Yesterday Kate greeted me with a smile when I went in to get her up. I always like that and want to think that means she knows my name and that I am her husband. She didn’t say anything that would let me know, and I didn’t ask. I told her I liked her smile and reminded her how often she comments about other people’s smiles. It seems to be one of the first things she notices. I told her I loved her. She said she loved me. Then she appeared very sad and her eyes filled with tears.

During most of our marriage, I rarely saw any tears. Since Alzheimer’s entered the picture, tears have become more common. As she declines, she is much more emotional. Tears flow at happy and sad moments. In moments like this particular one, I wonder if she experiences the same feelings I do. Every time I say, “I love you” I feel I am also saying, “Goodbye.” I know that I am losing a little bit of her every day. Her senses are keen. She knows something is wrong with her. At some level, I think she, too, feels that our time together is fleeting.

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Joy and Sadness Intertwined

The other day I mentioned that I experience more sad moments now, but that does not mean that we don’t experience many joyful ones as well. Our Saturday meeting with Joan, my Twitter friend, is a good example of that. Even in our daily lives we have such moments. There are also times when I experience both joy and sadness at the same time.

As we arrived home from lunch the other day, Kate asked me her mother’s name. When I told her, she said, “I wish I could have known her.” I said, “Let’s go inside, and I’ll show you some pictures and tell you about her.” Once inside, I took her to the hallway where there are several family photos. I pointed out one of her mother that is a favorite of mine. It must have been taken when she was about twenty. Kate has always liked it as well. She asked me who it was. For several minutes, she looked at it and commented on her mother’s eyes and how beautiful she was. She was deeply touched. Then I showed her pictures of her father. She asked his name and said, “He looks like a good man.” I told her he was “a very good man.” I followed that by showing her a photo of her grandmother. Kate was excited to learn that she had been the first member of the family to attend TCU.

After looking at these pictures, we went back to the family room where I showed her an album she and her brother had made of her mother’s family. It was just like the first time she had ever seen it. She was excited.

After dinner that night, she worked on her iPad for a while. I noticed that she had put it down and was just sitting in the chair looking bored. I brought in the “Big Sister” album that her brother Ken had given her a year ago. We went through a few pages together before I took my shower. She continued to look through it until she was tired, but she had had a day of pleasure looking at her family photos.

They were moments of joy for me as well, but that joy was accompanied by a measure of sadness as I perceived that the pictures did not bring back memories in the way they had done in the past. They only served as brief moments during which I told her about her family. The memory was gone just as fast as I gave her their names. Her interest in the photos struck me as a vain effort to reclaim her memories of family. We’re in a different place now.