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.

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.

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.

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.

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.

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.

How I’m Feeling

Considering Kate’s recent changes, it’s fair to ask how I’m doing. Let me try to answer that. By now, you know that I am bound to say, “remarkably well,” but it’s more complicated than that. Like Kate’s spirits, mine go up and down in about the same proportion as hers. As I have said before, “When she’s happy, I’m happy.” That implies there are times when she is not happy. That is true for both of us.

After Kate’s unusually happy day a couple of days ago, yesterday and the day before have been a little different. It’s not that she was sad or depressed. She wasn’t. It was that the symptoms of her Alzheimer’s seemed to be more evident. There wasn’t anything new. She just seemed more like she was drifting away, somewhat distant. That was particularly true last night.

At dinner, she asked my name several times and asked what I like people to call me. I said, “Richard.” She asked if that is what she should call me. I told her that would be fine. When she asked, she did so in the very natural way she usually does. What was different was that my name didn’t seem to register with her at all. It didn’t seem any more familiar than the name of the restaurant at which we were eating.

Our evening after dinner was also a little different. She was very tired and wanted to rest about 7:30. I suggested she could get ready for bed. At first, she just wanted to rest on the sofa. I told her it was getting close to bedtime, and it might be better to get ready. After getting into bed, she asked my name in much the same way she had done at dinner. After two or three times, I asked if she knew how we were related. She didn’t. When I told her we were married, she couldn’t believe it. I gave her a little information about our courtship and our wedding. That seemed to ring a bell, but she soon asked my name again. I told her and didn’t say anything more.

She has been gradually drifting way over the past few weeks. That means more moments of sadness for me. Like all things, I knew this would happen eventually, but it is the reality that has the greatest impact. I know that Kate’s condition will only get worse.

The good news is that I have a lot of things to keep me occupied. This blog is one of them. I am editing a book of emails I wrote under my dad’s name the last few years of his life. I am also writing an article for someone else’s blog. I am active on Twitter and with the United Way, Rotary, and the health foundation on whose board I served for nine years. In addition, I donate platelets every 3-4 weeks.

Of course, my primary role is that of Kate’s care partner. While that involves stress, it also incorporates a considerable amount of pleasure. I am thinking specifically of all the social contacts we have in connection with our meals and the many ways in which music plays a role in our lives. Beyond that, I derive satisfaction from helping Kate get through each day. She can’t do it on her own. I am glad to be here for her.

On balance, I believe that I am doing “remarkably well,” but there is no question that there is more sadness in my life as I watch her decline. I can work to minimize it, but I can’t escape it.

Another Bedtime Conversation: An Example of Kate’s Intuitive Thought/Ability

In yesterday’s post, I talked about the challenges that Kate faces in some types of conversations. I also noted that we converse about as much as we did before Alzheimer’s. I failed to say that until I took her off of Trazadone a year ago, she didn’t talk much. Most mealtimes we hardly spoke at all. Looking back, I think she may have been taking a higher dose than she needed. She was very sleepy. I am glad to say that is no longer an issue. We do have conversations, and some of those are unlike anything I could have imagined. Night before last we had one of those.

As usual, Kate was still awake when I got into bed. I moved over close to her and commented on what a nice day it had been. I told her I loved her. She said, “I like you. I even think I love you.” She went on to say that she was not ready to marry me. From there, she took us in a very different direction.

She talked about a “project” that she was thinking about. She never got specific, but she wanted to do something for people who have chronic financial problems. She expressed a desire to recruit a large number of people who could join together to address these issues. She wanted me to work with her. I told her I would. As with other conversations, she was very repetitive. She would circle back around and say the same things she had said earlier. She was confident with the two of us working together we could make a difference in people’s lives.

This conversation was another good illustration that her feelings are working. She can’t remember any facts, but she retains a sense that there are people with many needs. Her heart goes out to them. This particular idea about initiating a project to help people in need is just one example of that. It is also apparent when she talks about her mother, she invariably talks about her mother’s kindness to others and her desire to “help people.” Her mother was indeed kind, but I view this mostly as an expression of Kate’s personal feelings about relating to other people. It is also evident in the way she interacts with strangers. She is a caring person. This is not something new, but it is more pronounced now than in the past. It is certainly a more positive symptom of Alzheimer’s than one usually imagines.

Feeling Insecure

The other day I said I had been involved in a series of Twitter messages about people living with dementia and their need to feel safe and secure. I had to admit that I hadn’t given a lot of thought about that. Perhaps that is because Kate has appeared to feel both safe and secure.

I am beginning to pay more attention now. Kate can take credit for initiating that interest when she periodically says “I feel safe with you.” At first, I wondered if she felt some special threat from a person or people around her. After some reading and reflection, I began to consider how uneasy one could feel without a memory. Judy Cornish, the author of The Dementia Handbook, tweets quite a few messages about the importance of safety. Her work has sensitized me even more.

Recently Kate has exhibited more signs of insecurity. Even in the past week, she has seemed particularly needy. Like everything else, this didn’t arise suddenly. For years she has wanted to follow me rather than beside me when we are out. The most common occurrence is in restaurants. She doesn’t want to follow the hostess. She wants me to do it, and she will follow me. At first, I felt a little awkward but quickly adapted. That has its own problems. She frequently falls behind or fails to see me turn and loses me. For that reason, I keep looking back to see that she is still with me.

As noted in previous posts, she started following me in the house last spring or summer. That is when she was no longer able to remember the layout of the rooms. She asks me where the bathroom is every time she needs it. That occurs even when she is seated in a chair in our bedroom that is two feet away from the bathroom. On two occasions in the past few days, she has wanted to hold my hand as we walked through the house.

In the past, she often objected to holding my hand because she saw that as a sign of dependence. Even now, she sometimes rejects my hand when offered. The more common pattern, however, is her asking to hold my hand. This began when she was walking up and down stairs or up and over curbs. Now it seems to occur in public places where she fears she might get lost. I know this because she has specifically mentioned it. Previously, she didn’t appear to be fearful of getting lost at all.

This insecurity extends to more mundane things than getting lost. At restaurants, she has periodically asked me if her glass of tea is hers. That is becoming much more routine. When Ken and Virginia were here, they got to observe that several times. She doesn’t want to do the wrong thing and wants to make sure she has the right glass.

At home, she asks, “Where do you want me?” or “Where should I go?” When I put her medicine on the table or island in the kitchen and tell her these are her pills, she forgets and asks if they are hers or if they are for today or tomorrow. After bringing her nightgown to her, she doesn’t start to put it on right away. When she is ready for bed, she asks if it is all right to put it on. She asks if she should get in bed. The list could go on and on. Once again, she doesn’t know what to do next and doesn’t want to make a mistake. She depends on me to protect her from doing the wrong thing.

I’ve also noticed signs of insecurity when I leave her with a sitter. Sometimes she asks if I can stay or go to lunch with them. Other times she asks if she can go with me. Recently, she told the sitter she would rather rest than go to lunch right then. She ended up resting the entire four hours I was gone, and she hadn’t had breakfast. I think Kate might have felt insecure going out with her. With the same sitter yesterday, it went quite well. She wasn’t the least bit bothered when I left and seemed fine when I returned. After Cindy left, however, she said felt better when I was with her.

The most dramatic example of her insecurity occurred Sunday before we were to attend a musical concert. I dropped her and a friend off at the theater while I parked the car. When I returned, I discovered that she felt sick. I decided we should leave. She didn’t want me to leave her while I went back for the car. She seemed to get better on the way home. She rested at home and never showed any further signs of a problem. I do know that she needed to go to the bathroom. Apart from that, I never noticed any other signs of illness. She was fine the next day. I think she just felt insecure with our friend whom she can’t remember.

One other little thing occurred yesterday morning. As I led her from our bedroom to the kitchen, I automatically took her hand. Often, when I do this, she resists. This time she held it firmly all the way to the kitchen. Shortly thereafter, we were on our way to Panera before going to her dermatologist. She thanked me without saying why. I thanked her and said, “I love you.” She got a sad look on her face and tears welled up in her eyes. As we turned left into the street leading to the restaurant, she grabbed my hand. The turn must have been unexpected, and she was frightened. It was less than a block to Panera, but her fright continued.

Last night at dinner she wanted me to sit on the same side of the booth with her. We have done that a number of times in the past, but this was quite unusual for her to request that. The way she asked it seemed like she would feel better if I sat closer to her than across the table.

All of these things and more have made me more mindful of how significant being safe and secure can be to someone with dementia. I need to be especially sensitive to this in the days ahead.

What a Difference a Smile Makes

Several times I’ve mentioned Kate’s smiling as I enter the bedroom to check on her in the morning. I love that smile. It reminds me of those days before Alzheimer’s. Even now as I understand that the smile doesn’t mean that she remembers my name or that I am her husband, her smile gives me a good feeling. I think “What a great way to start the day.”

It’s not always that way. Take yesterday for example. She wasn’t smiling. Instead, she looked as though she wished I hadn’t come in. Now that I am more aware of her ability to learn intuitively, I suspect she knows that when I walk in, I am probably there to get her up. Yesterday she told me she wanted to stay in bed a little longer, perhaps a lot longer. So it is understandable that she didn’t smile. It was only when I told her Mary, our sitter, was coming and that I hoped I could take her to lunch that she decided to get up. As usual, she was appreciative and thanked me for helping her get to the bathroom and dressing, but she expressed her independence and was irritated at my attempt to help.

She joked with me as we prepared to leave the house. It was one of those times when her jokes had a little bite to them and, of course, at my expense. I didn’t joke with her. Kate has never been one to joke. I have often joked with her. Like all jokers, I sometimes go too far. A year or two ago, I felt our joking with each other was getting out of hand. I stopped. I started responding more lovingly all the time even when she joked with me. I think that had a great impact. She still likes to kid me, but it seems less bitter.

She didn’t say much as we drove to lunch. As I helped her out of the car, she said, “I love you.” For the balance of the day, she was just fine. When we went to bed, she said, “It’s been a wonderful day.” I agreed. I like her smiles. Even when she doesn’t begin with a smile, she ends with one.