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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.

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Signs of Aphasia

When Kate had her psychological evaluation following her diagnosis, the psychologist told us that she was likely to retain her greatest strengths the longest. I would say that is her gift for conversation in everyday social encounters. I attribute her success in social situations since her diagnosis to that particular skill. It has meant she could get along well without saying anything that would make it obvious that she has Alzheimer’s. That is changing significantly now.

There are two aspects of her aphasia that coincide with fundamental symptoms of dementia. The first is difficulty organizing her thoughts to explain something she wants to tell you. This has been a problem for a long time. I quickly learned not to ask her to explain anything. She would simply say, “Let’s not talk about it now.” The second involves her memory for words. That is happening now.

I am sure this began earlier than I recognized and relates to the difference between all the words in one’s vocabulary and the words that are most frequently used. Now she doesn’t recognize some of the most common words that we all use. I mentioned in an earlier post that I have had to tell her what pizza is on several occasions. I’ve tried to describe a pizza, but the best way to tell her is to pull up a picture on my phone. Ironically, one of the first words to drop out of her vocabulary was iPad. She almost always calls it “my thingy.” That is also used for a number of other words that she can’t recall.

Sometime during the past week, I told her she was up early enough for me to get her a blueberry muffin. She had no idea what I was talking about. This week she looked at the salt and pepper shakers on the table at a restaurant and asked what they were. I explained, but she didn’t appear to understand. On another occasion, I used the word “restaurant.” She didn’t know what I was talking about.

Another type of speech problem is properly pronouncing words. This comes up most often when she asks me the name of something or somebody. I think this occurs because she doesn’t hear the name correctly, but I am not at all sure. It also occurs in other situations. For example, she often pronounces “shoes” as “shows.” The other night she said, “I still want to walk a little bit on my thingy.” (Translation: “I still want to work a little bit on my iPad.”) Similarly, she recently said something about my “bed.” She meant my “head.”

Even though I know this is a common characteristic of this stage of her Alzheimer’s, I find myself concerned about it. Perhaps, I am sensitized because of our experience with Kate’s friend, Ellen, in memory care. We continue to visit her every 4-5 weeks, but her aphasia has made our visits more challenging. I can’t help wondering how long it will be before Kate is in the same position. That would be a major change in our lives.

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Markers on Our Journey

One of my AlzAuthors colleagues and a Twitter friend, Barbara Ivey, has written a unique “book” called Patterns in Time. It is by far the “tidiest” summary of a family’s experience with Alzheimer’s I have read – 8 pages including the front and back covers. Despite its brevity, it includes relevant information about the disease, key resources for help, and a remarkably complete summary of her mother’s Alzheimer’s along with the roles that she and her father played.

I have been particularly taken with her timeline that shows key events that occurred along the way. It reminds me of the admonition of sales trainers that a good sales person needs a strong “30-second sales pitch.” Ivey’s message is brief and to the point, but it tells her story. One reason I find her approach fascinating is that it is the exact opposite of what I have tried to do in this blog. I have saved my journal in several different files and haven’t checked the number of pages since launching it as a blog in January 2018. I seem to remember it was over 1500 pages at that time. It must be over 2000 by now. For the most part, I believe it is accomplishing my objective. It is a detailed account of our experience Living with Alzheimer’s. The problem is that it is too long for anyone other than close friends or family to read in its entirety.

For some time, I have thought about using it as a resource for a book that would tell our story in a more “digestible” format than an almost daily journal. It might have been helpful for me to have kept a timeline similar to the one in Ivey’s book. I didn’t do that, but I have noted a number of markers along the way. During the first few years, there were very few. Now they appear much more frequently. Creating a timeline from those that have occurred and all the new ones could be the basis for editing my blog and turning it into a book.

Some of the key markers of the past include Kate’s diagnosis, our planning for the rest of our lives (travel, eating out, music, visiting family and friends, etc.) Kate’s giving up her computer, our last international trip, giving up her yardwork, our last trip to her home in Fort Worth, our last trip to Chautauqua, our last visits to our children’s homes, the forgetting of the names of her family, our last movie, no longer attending evening music and theater performances, and the near elimination of trips to Panera and Barnes &. Noble. Of course, there were many others as well.

We have recently experienced two new markers. Both of them involve Kate’s increasing problems of mobility. I used a handicap placard for the first time when we met friends for dinner last week. I had just gotten it the week before. We find convenient parking most places we go, so I had not felt a need for a placard before now. In this particular case, we were going to a restaurant in a downtown office building. It can be difficult to find on street parking, and the parking garage requires a long walk. In the future, I am sure I will find other occasions when having the placard will be useful.

Kate has been having more problems getting up from chairs at home as well as the sofa. After lunch yesterday, we drove across town to the La-Z-Boy showroom to look at lift chairs. The only thing I told Kate was that I wanted to look at a chair that might be easier for her to get out of. She wasn’t excited.

When we walked into the showroom, we were greeted by a sales woman who took us to the appropriate section. She had quickly noted Kate’s size and showed us one that she thought might be the best fit. Kate took a seat and loved it. This was before demonstrating how it works. Once we had done that, she liked it even better. I went ahead and bought it although it will be 4-6 weeks before delivery. It will also have the advantage of reclining so that she can rest in the chair rather than the sofa. I think she’s going to like it.

These are just two among many other things that are happening now. I will talk about some of them in other posts.

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A Day of Confusion, Not “Knowing,” and Insecurity

About 4:15 yesterday morning, Kate moved over very close to me. Then she took my hand and held it gently. I often wonder if she knows who I am when she wakes in the middle of the night. Neither of us said anything, but this was a time when I felt sure that she did.

I was wide awake and decided to get up at 4:45. After finishing in the bathroom, I walked toward my closet when I heard her say, “Hey.” I walked over to the bed and could see that she was having one of her moments of confusion. I asked if I could help her. She said, “I don’t know.” I said, “I bet I can. Were you wondering where you are?” She told me she was. I explained that we were at home. She had trouble believing that. I didn’t push it. She asked my name and then hers. She said, “Who are you?” I told her I was her husband. This was one of those times when she didn’t express any doubt or say, “How did that happen?” I told her we had been happily married for fifty-six years and that I loved her. She said she loved me too.

We talked a little longer, and I asked again if there were anything specific I could help her with. She wanted to go to the bathroom. As she got out of bed, she was shaking a little. She held my hand and said, “I’m sure glad I have you.” I said, “And I’m glad I have you.” When she finished in the bathroom, she said, “What now?” I told her it was early and I thought she should go back to bed. After walking her to bed, I was about to ask if she would like me to stay with her when she asked me to stay. We talked about fifteen minutes. During that time, she was very insecure and expressed her feelings about feeling better with me. Then she said, “I’m all right now. You can go.” I told her to call me if she needed me. She said, “What should I say?” I told her she could just say, “Hey.” She wanted to know my name. When I told her, she said, “Okay, Mr. Richard.”

We had a nice relaxing day. It was Labor Day. My Rotary club did not meet, and I gave the sitter the day off. Most of our usual restaurants were closed, so we went to one we like but rarely visit. Then we came back home for the afternoon. Kate was very tired and rested for at least two hours but did not go to sleep. When she sat up, I asked if she would like to go someplace like Barnes & Noble. She said she would rather stay at home. That is now becoming a more established pattern. It doesn’t seem that long ago that we went out almost every afternoon. That is another change that has cut down on our social contact. That means our eating out is becoming more important for us.

Since she didn’t want to leave the house, I suggested we look at an old photo album I had retrieved from a closet the day before. It has pictures of our children at the time of our son’s birth. It had been a very long time (years) since we had looked at them. We spent another hour with it. Kate loved every minute. As she has done with the other family photo books, Kate can never make the associations that would help her guess who the people are. For example, after I identified Jesse and Kevin in one photograph and pointed out Jesse in the following picture, she didn’t know who the boy was even when they were dressed in the same clothes as the previous photo. I don’t mean that this happens every time, but it is very common.

Before leaving for dinner, she said something that reinforces my belief that she recognizes that she has a significant “problem” and depends on me. She struggled with how to say it and ended up saying something like, “I know my problem is not that serious, but I appreciate your taking such good care of me.”

Throughout the entire day she seemed very insecure. She expressed that by her thanking me for taking care of her and asking what she should do somewhat more than during a typical day. As I have said before, her neediness and expressions of appreciation make me more determined to keep her happy and see that the rest of her life goes as smoothly as it can.

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Thinking About Stress: Part 2

In yesterday’s post on stress, I discussed two aspects of caregiving that I believe influence the degree of stress that I and other caregivers experience. My intention was to convey why I believe my stress is less than that of other caregivers. In my earlier post, I suggested that my caregiving load has been comparatively light and that my prior caregiving experience as well as my personal characteristics have enabled me to cope with the challenges I have faced. Today I focus on the ways in which I have been able to minimize stress. I am fortunate to have a variety of ways to address the problem, and I depend on all of them.

Binging on music and eating out are unquestionably my best ways to manage stress. I have written extensively about both of these and won’t say more about them here, but they have been great therapy for Kate as well as for me. They have provided us with pleasure and kept us socially engaged. We are fortunate to share these interests. That is not true for every couple.

Exercise has been a part of my life for a long time. Although caregiving has changed that somewhat, it still is an important part of my life. As I became less comfortable leaving Kate alone, I engaged a sitter three afternoons a week so that I could continue going to the Y as well as doing other things cited below. I reduced the amount of time spent at the Y but added a 40-minute walk every morning.

Reading is another of my pleasures. Before my retirement, I focused on my career. Much of my reading then was influenced by my professional interests Since then I have broadened my reading substantially. After Kate’s diagnosis, I opened an account with Audible and get two books a month. I listen to books while I am at the Y and when I walk in the morning. I like being able to accomplish two tasks at one time. I also read some on my iPad. I wanted to learn more about the experiences of other caregivers and began to read books they as well as people with dementia have written. I have read over thirty of these.

I have participated in voluntary organizations for most of my life. As a caregiver, I have had to reduce that, but I fit some in my schedule. I’ve been a Rotarian for 36 years. I currently co-chair our CART Committee that collects weekly contributions from our membership for Alzheimer’s research. I have been active with United Way for 35 years and serve on two of their committees. Although I no longer serve on the board, I maintain contact with a local hospital foundation that raises funds for the area’s largest hospital system. Until three years ago, I was still active in our church. Now my only involvement is serving on a committee that calls church members on their birthdays. The pastoral staff has remained in contact with me. Kate and I have lunched with three of the pastors, most frequently with our senior pastor with whom we had such a good experience this past week. He was the first person to approach me with a concern about Kate. That was July 2011, six months after her diagnosis. They have definitely stayed in touch.

I also meet with friends for coffee. Mark Harrington and I get together each Friday afternoon for over an hour at Starbucks. I also have a church friend I meet at Panera about once a month.

Email contacts have also been important. In particular, I am in daily contact with two college friends. In the past, we could easily have over twenty messages a day. Our correspondence not as frequent now, but rarely does a day go by without several messages.

For many years, we have had good friends in Nashville. We have a long history of daytrips to visit friends. We have continued those visits since Kate’s diagnosis. One of those is Kate’s closest friend who is now in memory care following a stroke four years ago. We try to visit with her every four or five weeks. In connection with that visit, we often get together with another of our Nashville friends.

I launched this blog and opened a Twitter account in January 2018. These have opened up an entirely new avenue for minimizing stress. They have helped in two ways. First, they provide new activities that I can do right from home. Second, they have enabled me to make new online friends that have been very supportive. I have learned much from them.

All of these activities have kept me active and provided different ways for me to be socially engaged. I expect my stress is likely to increase in the future. That’s because Kate is requiring more personal care than in the past. Up until now, I have had sufficient time for the personal things I like to do. In addition, most of our time together is spent doing things we both enjoy.

The major part of my stress doesn’t arise from my direct caregiving responsibilities. It comes from the sadness I feel as I watch Kate’s decline. Although I can’t predict the timing or all the specific things we are likely to encounter, I know all too well where we are headed. As we move forward, I intend to do what I have done in the past. I’ll take great pleasure in our Happy Moments and enjoy the satisfaction of keeping her as happy and secure as I can. I feel it’s a privilege to walk with her through this last chapter of her life.

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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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Thinking about Stress: Part 1

There is no question that caring for a loved one can, and often does, cause a good deal of stress. Judging by the frequency with which people remind me to take care of myself, caregiver stress seems to be common knowledge. I find, however, that the degree of stress can vary tremendously from one person to another. I don’t think that variation is well understood.

That leads me to a favorite topic of mine: generalizations. All of us depend heavily on them. They are often very useful; however, applying a general pattern to a specific situation (in this case, the stress of an individual caregiver) calls for more detailed information about the specific caregiver and her/his situation.

I usually think about three major elements that play a role in stress experienced by a specific caregiver like myself. One is the sources of stress. Some things produce a lot of stress. Others produce very little. A second category is the personal experience and characteristics  of the caregiver. Some people find it difficult to deal with stress. Others find it less so. The third category involves the things a caregiver can do to reduce or minimize stress. In today’s post and the one following, I would like to comment on how those three come together in my particular case.

As Kate’s care partner I have experienced stress, and that stress has increased as her Alzheimer’s has progressed. As I look to the future, I believe that stress will likely increase. On the other hand, stress seems to be less of a problem for me than for many others. I say that based on reading a variety of online forums for caregivers as well as over thirty books by caregivers who have provided vivid accounts of their experiences. When I consider what they have been through, I see good reasons for my feeling less stress, and the three elements I mentioned above provide an explanation. In this post, I will deal with two of them.

Sources of Stress

All stressors are not equal. The ones I confront are minimal compared to those of other caregivers. The load I carry is simply not as great as that of theirs.

In the first place, I was at a point in my career when I could retire to devote my attention to Kate. Many caregivers have a variety of other responsibilities that also demand their attention. I am especially mindful of spouses who have to continue working to pay the bills and can’t afford to hire someone to help. There are many women who are not only working and caring for one or both parents but also care for children. I am familiar with their stories and recognize the struggles they are facing.

Kate has also been easier to care for than many other people with dementia. It is true that she has been somewhat more irritable, especially as the disease has progressed, but that pales in comparison to other situations with which I am familiar.

In addition, neither Kate nor I has had to deal with any other serious illnesses. That is unusual for people our age. We are approaching eighty, and Alzheimer’s is the only significant health issue for us. I have been sensitized to this fact when Kate has had a cold. That creates an extra demand for me, but it is nothing compared to other chronic illnesses.

Personal Experience/Characteristics of the Caregiver

Many caregivers for a person with dementia have little experience with the disease. They begin from scratch. Often, they are children caring for one or both parents. They face a steep learning curve that calls for knowledge of the disease itself while adjusting to the new role of parent care. This has to be incredibly stressful.

Kate and I had been caring for our parents and my father’s significant other for twenty-two years at the time of her diagnosis. Her father had a stroke and her mother vascular dementia. My mother had an unspecified form of dementia; my dad’s significant other had vascular dementia, and my father had a stroke. I feel as though everything I had learned from those experiences prepared me to care for Kate.

I also believe my personality makes caregiving easier for me than for others. I can’t take credit for that. I thank my dad. He was the same way. He kept his sense of humor and focused on everything he could see as positive and minimized the negative. He was a problem solver in his work and in his personal life. He had faith there was a solution to every problem he encountered. I think I am a bit more realistic than he was, but I recognize many ways in which he and I are similar.

If it were only the things I have outlined above, I believe my stress would have been less than that of other caregivers, but there is more. It involves the variety of ways in which I have been able to minimize my stress. I’ll save that for another day.

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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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At Stage 7 of Alzheimer’s, is there really any joy for caregivers and the ones for whom they care?

My memory of the last stage of my mother’s dementia has faded significantly. One thing I remember is that, except for his Kiwanis meetings, my dad still took her with him whenever he went out. That was the only time he sought help. He dropped her off at a senior day care for four hours to attend his meeting and shop for groceries.

I look back with amazement as I think of those days. At the time, I wondered why he did it. He was eighty-eight, and she was completely dependent on a wheelchair the last two or three years. In order to get her from their apartment (that fortunately was on the ground level) to the car, he had to roll the wheelchair 25-30 feet over grass. Then he got her into the front seat of the car, folded the wheelchair, and loaded it in the trunk of his car. From my personal experience, this was not a simple task. Yet I never heard him utter the first word of complaint. They had been married 70 years when she died. He was just expressing his love for her in the only way he knew how at that point, and he did it joyfully.

Now that Kate is closer to that stage of her Alzheimer’s, I have a greater sense of what sustained him. He could see what I didn’t. There is no doubt to me now that he could find joy in their relationship when it appeared to me that the joy had long since passed.

I believe Kate and I have some time left before she is at that same point, but I can already see that joy is indeed possible very late in this disease. I am sure that doesn’t happen for everyone. As I have said before, we are very fortunate. My point is that it can happen and should be something for which those of us living with Alzheimer’s can hope.

Moments of joy may not come as often as they did before. They may be short-lived.  They do occur for us, however. We had another of those “Happy/Joyful Moments” at lunch yesterday. As I reported in my previous post, she didn’t know my name or our relationship when she got up to go to the bathroom in the morning. I’m not sure whether she did or didn’t later when I got her up for lunch. There were times during lunch when I know she didn’t. Neither did she remember her own name. As earlier that morning, she was quite at ease with me. When she asked my name and relationship, she accepted it as naturally as she did when she pointed to her salad and asked, “What is that?”

She was very talkative. Interestingly, we didn’t gravitate to our usual conversations about family and marriage. She asked questions about the restaurant, the food, and the staff. It was unusually quiet when we arrived. Only one other table was occupied. She said, “I wonder if <using her hand because she couldn’t think of the word for servers> like it better when it is quiet like this or when it is ‘you know’ <again using her hand and groping for the word ‘busy.’>

It is always fascinating when she doesn’t “know” me but also talks about my personality quirks. She kidded me a lot during lunch, and none of the kidding had a bitter edge to it. She was having fun, and I loved it.

Because it was less busy, we got more attention from the staff. We had several conversations with our server. Another person who often serves us stopped by our table to speak. The manager also stopped by for a brief visit. During our conversation with the manager, I commented on how much I had liked the broccolini salad with a little tomato and feta cheese. Kate didn’t like it because she doesn’t like the crispiness of raw vegetables. As the manager was about to walk away, Kate said, “And don’t give me any of that anymore.” She didn’t sound offensive. It was more like a little child simply expressing her distaste for the salad, something I had already explained to the manager.

She also said or did a couple of other things that I got a kick out of. She now frequently mixes her words and sometimes says something that is just the opposite of what she meant or is a homonym for the word she wanted. For the first time, she did this with a gesture instead of a word. She dropped a piece of cheese on the table, picked it up with her hands, and ate it. She gave me a devilish smile, put her hand over my mouth (instead of my eyes) and said, “You didn’t see that.”

A little later we had dessert. When the server brought it to the table, she kidded me, saying, “Didn’t you want one too?” She took a bite or two. Then I said, “You’re going to like that.” She said sternly, “I’m already enjoying it.” I said, “I should expect that from an English teacher. You want to make sure I’m using the correct tense.” For some reason, she thought that was funny and began to laugh. I guess that was because it was something she would usually say and not “me,” Oops, “I.” <G>

Oh, yes, the meal was also very good, but that wasn’t what gave us so much pleasure. Being together, and with other people, is what made lunch special. We had a good time.

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This Morning’s Experience of “Knowing” but “Not Knowing”

Some time ago (February 18, 2018) I wrote a post entitled “What does it mean to know someone?” The answer to that question is much more complex than it sounds. I see that all the time with Kate. Like other care partners, I am very sensitive to those times when Kate knows or seems not to know me. I tend to put her level of knowing in four categories.

  1. She knows me in all the traditional ways a wife knows her husband. She knows my name, that I am her husband, and has a feeling of affection/kinship for me.
  2. She knows either my name or that I am her husband (usually the latter) and has a feeling of affection/kinship for me.
  3. She knows neither my name nor that I am her husband, but has a feeling that I am someone familiar and whom she trusts.
  4. She has no idea who I am.

I can’t put an accurate estimate on the frequency with which she experiences these categories. I do know that Category 4 is the least frequent by far. There have only been a handful of times in which she has had no idea who I am. Category 1 occurs infrequently but much more than Category 4.

That leaves the other two categories that occur most often. I’m not sure, but I think we are at a time when Category 3 is, or is becoming, the most common. Most of the time she knows me as someone familiar and whom she trusts.

I know there must be caregivers who find it disturbing when their loved ones no longer remember their names or relationships, but I find that leaves me with the most important connection that we have and have always had. Like most other couples we were attracted to each other from our first date, perhaps even before or there might not have been a first date. After all our experiences and changes in our lives, this sense remains. I am optimistic that it will continue though I recognize that, too, may give way to this disease called Alzheimer’s. In the meantime, I am going to relish moments like this morning. In the scheme of things, it wasn’t significant, but it meant something to me.

I was just finishing breakfast when I noticed on the video cam that Kate was about to get up to go to the bathroom. I went to the bedroom and could tell this was a morning when she was confused. Unlike other times, she seemed very normal in terms of her emotion. She showed no signs of anxiety or fear though I feel sure she was feeling anxiety. In a very natural tone of voice she said, “What’s going on?” I said, “Well, you just woke up, and you are in your own house. That’s your back yard that you like to look out on each morning.” She said she recognized it.

Then she said, “What now?” I said, “I think you were about to get up to go to the bathroom.” She said, “I think I was. Where is it?” I said, “Let me show you.” I took her hand. She held it all the way. That’s not something she always does. As we walked, she said, “Who are you?” I said, “I am Richard, and I am your husband.” She didn’t act surprised nor elated. She just accepted that as a label for me.

After using the toilet and washing her hands, she said, “I wish I could just be with you and nobody else.” I said, “You are. This is our house, and there’s nobody else her but us.” She seemed to like that but didn’t express any special emotion at all. She said, “What now?” I said, “You usually like to go back to bed for a while.” She said that is what she wanted to do. She said, “Who are you?” I told her again and noticed that she seemed just a bit uneasy and asked, “Would you like for me to stay in here with you?” She did, and I told her I would get my laptop and come back to the room. She said, “Don’t leave me. Take me with you.” I told her I would; however, by the time we reached the end of the bed, she had forgotten and walked toward her side of the bed.

After she was in bed, I asked if she would like me to stay in the room with her. She did. I remained with her. She fell asleep. Thirty minutes later I came back to the kitchen (my office) to write this post.

This was one of those times she didn’t know my name or our relationship, but she had a good feeling about me and trusted me. That is what is most important to me. It reinforces my desire to keep her secure and happy, and she almost always is.