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Changes Abound

This has been a week when I feel I’ve had more to say than I’ve said. I’ve been busier with Kate, and a few holiday related tasks. In addition, I have been dealing with a few household issues, a leak in our pool, a leak in a pipe under the house, a toilet that needed fixing, and some minor electrical work. Perhaps more than anything else, I haven’t been exactly sure how to express what I want to say. It’s all wrapped up in a single word: change.

Haven’t I said that before? Yes. Maybe that’s why it’s hard for me to say it again in a way that distinguishes what is going on now from the past. I’ve devoted a little more time this week to paying attention and thinking about that rather than writing. I haven’t considered this a waste of time at all. I’ve read about authors who have made a point of saying that the “thinking” part of writing for them is the most valuable part. With that in mind, let me tell you about some of the things that are going.

Kate  more frequently expresses insecurity about what to do when she wakes up, when brushing teeth and bathing, when we are in restaurants. She was especially uneasy during our Christmas dinner at Ruth’s Chris. That may have related to the somewhat more formal nature of the room, the service, and the fact that this is not a restaurant we often frequent. It had been several years since our previous visit. That was with the staff at the office and a time when her Alzheimer’s affected her much less than it does today. Whatever the cause, she was never fully at ease.

Her morning confusion seems to be more severe now. On several occasions, she was so frightened that she hasn’t wanted to get out of bed. Each time I have been able to help her recover, but it takes longer than the past. That happened day before yesterday. She didn’t know “anything.” I talked with her very slowly and calmly. She didn’t know who I was, but she trusted me. I was eager to get her up so that we could have lunch together before the sitter arrived, but I knew that rushing her would make things worse.

I put on some soothing music at a very low volume, and we talked for fifteen minutes or so. Though I talked about her parents and our children, nothing rang a bell. She became comfortable talking with me, but she was still confused. Then I decided it was time for something more upbeat. I remembered that several weeks ago she had recognized and liked the song “A Bushel and a Peck.” I played it. The minute she heard it she laughed. We were making progress. I was streaming the song from a playlist of Doris Day music, so we heard a couple of other old songs we both recognized. Then I switched to the soundtrack of My Fair Lady. By the time we got to the third track, I suggested we go to lunch. She didn’t jump right up, but she did let me ease her up, and we got ready. She was fine.

She struggles more with her clothes than in the past. Sometimes she wants to be independent, and I let her do what she can. It isn’t long, however, before she asks for my help.

Her vocabulary is diminishing. She often says, “I don’t know how to say this.” She can’t pull up the words that express what she wants to say. That is more than a vocabulary problem. It is also a problem organizing her thoughts.

Along with that she sometimes fails to recognize common objects. Ironically, that almost always happens with her iPad. When she sees it, she asks, “What’s this?” Last night I handed her toothbrush to her and didn’t know what it was or what it was for. I explained how she should use it. At Panera this morning, she looked at a napkin and asked what it was.

I have no way of measuring this, but it seems like she does not know my name or our relationship for a longer time each day. On the other hand, she almost always feels comfortable with me. She trusts me. It is when she first wakes in the morning that she is least likely to know my name or relationship. She does, however, know to call me in the morning. Most of the time, she just says, “Hey.” Interestingly, there are times during the day when she needs something and calls me by name. This seems to be a example of a simple “stimulus/response” behavior. She occasionally asks my name shortly after using it.

Our Christmas Day conversation when she couldn’t remember anything about her mother was a striking first. She has always retained strong and very positive feelings for her mother. I thought that would be the last memory to weaken. Of course, that didn’t last. I haven’t seen any similar signs since then.

There are more times like this when she seems to be in a fog. These seem to occur most frequently in the morning when she wakes or during the day after resting a while. It is like her brain closes down while resting or sleeping. Then when she opens her eyes and looks around, she doesn’t recognize anything or in some cases, she has hallucinations. After resting in her recliner a while the other day, she opened her eyes and pointed to something across the room and said, ““It’s been a long time, you know.” <pause>. Then she pointed to the ceiling and said, “Hey sit down.  All of you.” (Chuckles)

She talks in her sleep more. Sometimes I talk back to her, and she speaks to me while still appearing to be asleep.

Her vision is worse. I think that accounts for some of her uneasiness when walking from the car to a restaurant and back as well as her difficulty getting seated or going up and down curbs. She frequently fails to eat food on her plate because she hasn’t seen it. Occasionally, I walk to another room after we have been talking. When I walk in moments later, she doesn’t recognize me and asks, “Where did he go?” If I say, “Who,” she usually says, “The other guy. The one I was talking to.”

She loses me easily. Sometimes that occurs when we are within a few feet of one another. The other night at a nearby pizza place, I saw that there was just one remaining booth and walked ahead of her to claim it before someone else. When I looked around she was looking for me. We looked at each other, but she didn’t recognize me until I walked closer. She was frightened that she had lost me.

Surprisingly, she seems to be rather good at seeing small spots. It is not unusual for her to eat everything on her plate and then look for tiny specks of remaining food that she picks up with her finger.

Her sleeping pattern is more erratic. She had a long period of time when she slept regularly until 11:00 or after or when I woke her. More recently, she went through a period when she would wake up early and go to the bathroom then go back to bed. I’m not sure there is a pattern anymore.

She has more problems with eating. She is particularly confused when she has both a fork and a spoon. If she has soup, she usually begins to eat it with a fork. Then I show her the spoon. After she uses the spoon, she uses it for everything else.

She also uses soups and condiments as sauces for other parts of her meal. For example, we eat lunch at Bluefin on Saturday. They prepare excellent grilled salmon that she likes. It is not unusual for her to dip her salmon in the ketchup that accompanies her sweet potato fries. I brought some lobster bisque home from lunch on Christmas along with Our sweet potato casserole. She used the bisque as a dip for the casserole.

As she was finishing her meal last night, she poured all of the remaining ice and tea onto her plate with a few pieces of chicken and began to eat the dozen or so flat, square pieces of ice along with her chicken. She didn’t leave a speck of anything on her plate or the two cups with her side dishes of strawberries and applesauce.

She is beginning to forget how to take her pills. Sometimes when I hand her a pill and a glass of water, she asks what to do with it. She occasionally puts the pill in her mouth, drinks the water, and doesn’t swallow the pill. When I hand her the next one, she says, “What do I do with this one?” I have to watch her more carefully than in the past. She can take one pill and forget the others.

Yes, life is changing. There are more things that demand my attention. Having said that, we still have a good time together. I’ll say more about that in another post.

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A Difficult Morning

I have often said that I am able to lead Kate to a recovery whenever she has challenging moments. Most of those involve her confusion in the morning. More recently, she seems more frightened by sudden noises like those we hear at restaurants. She is also more irritable. I attribute that to her not understanding or anticipating my intentions when I help her. Yesterday morning all of these came together.

It began when her overnight underwear (pull-ups) failed. I was in the kitchen and heard her say something. She was upset. When I asked if I could help she said, “Get me out of here.” I got her to the bathroom. As I helped her get cleaned up and brush teeth, she alternated between wanting me to tell her what to do and resisting my help. As she usually does, she got tears in her eyes and apologized to me several times. While we were standing at the sink, I put my hand on her arm. She shrieked as though I were going to harm her. I asked why she was so upset. She cried and said, “I don’t know. I don’t know.” I believe that was a very honest answer. She really doesn’t know why, but she still feels she shouldn’t respond to me this way. I tried especially hard to respond in a gentle, caring way to comfort her.

Several times she said, “Why did you bring me here? I just want to go home.” I told her I would take her home. Then I got her dressed and took her to Panera for a muffin. Once we were in the car, she seemed fine. She even spent more time on her iPad than usual. In fact, we would have stayed longer except that it was almost time for the sitter who comes at noon on Monday. She didn’t mention going home again. The sitter came a few minutes after we got home, and Kate was just as natural with her as she is with me. I felt good as I left.

Looking back, I see the only difference yesterday morning from other challenging mornings was how upset Kate was. I don’t believe it lasted any longer than other mornings when she is confused. It does reinforce my belief that remaining calm with her and easing her into her daily routine brings about her recovery.

I hope this will continue, but I know I can’t be sure. I am reading a memoir written by a doctor who cared for his wife who had Alzheimer’s. I have identified with him in a variety of ways, especially his desire to care for his wife in such a loving way. Last night I read a section in which he relates the severe anger that his wife experienced in the late stage of the disease. Is that ahead for Kate? As they say, “only time will tell.’

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The Therapeutic Value of Music and Reading

Kate and I have always enjoyed music and, especially, live performances. They have been fully integrated into our lives since her diagnosis. To start with I didn’t think of this as therapy. We were simply enjoying ourselves. A year or two later Kate experienced several panic attacks as a result of my rushing her to get to events on time. One time she hadn’t calmed down when we got in the car to leave. I turned on the second movement of Brahms’ violin concerto. We didn’t talk while it played (about ten minutes) When it was over, she was calm. Since that time, I have used music a good bit to put her at ease even if she isn’t having a panic attack. It makes her happy.

This past Sunday we attended a Christmas show that achieved the same effect. I think she must have been tired because she had gotten up early and did not rest after lunch as she usually does. I know she was a little grumpy when we walked into the theater from the parking lot. We didn’t walk far, but it was too far for her and also chilly. We sat in our seats for ten to fifteen minutes before the show began. She doesn’t like waiting and complained most of the time. I assured her she would like the show, but she was not convinced.

Her mood shifted immediately when the show started. The cast was large and included a number of young children and teens along with the adults. The music, of course, was the key factor. She audibly expressed her enthusiasm after each song. That set the stage for a very nice dinner experience.

It may well be that reading will be another tool in my arsenal to lift her spirits. I looked at my reading to her as a way to occupy her time when her use of the iPad dropped to a few hours a week after years of six to eight hours a day. That night I was looking for something more than amusement. She was grumpy again after dinner. As she began to get ready for bed, she pointed to the ceiling fan and asked me to “turn that thing off.” I told her it wasn’t on. She said, “Well turn it on.” I did, but she didn’t like it and told me to turn it off again. I started to help her with her nightgown, and she said, “I can do it myself.” As she does so often, she apologized for the things she had said, but she continued to be grumpy.

After she got in bed, I asked if she would like me to read The Velveteen Rabbit. She said she would. She didn’t say a word while I read. That was unusual. I wasn’t sure that she was listening and wondered if she might have fallen asleep. When I finished, I said, “Did you enjoy that?” She told me she did, but it was the tone of her voice that was the clearest indication she was all right. She also said that she remembered some parts from the “other time” I had read it to her. I felt good about that because she didn’t recall the book at all previously. I suggested that it made a good bedtime story and that we might do that again sometime. She liked the idea. I was glad. I found it to be a nice way to end our day together. Reading, like music, is a “Win/Win” for both of us.

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This Morning

Last night I picked up an email from my friend Tom Robinson. He asked how I managed to remember the different experiences Kate and I have and especially the times they occur. In my reply, I confessed that I forget a lot. So much is happening now that it is impossible for me to remember everything. I really wish I could do a better job capturing our conversations. They would be much more effective in telling our story than my personal descriptions, but it is becoming increasingly difficult for me to remember such details. There are some occasions when I am able to write shortly after a particular incident. Such is the case right now.

It is now 8:19 Friday morning. I was up at 6:25 and had finished breakfast. It looked like this would be a morning when I would be able to walk and listen to my book. As I was preparing to do that at 7:50, I set the video cam on the island in the kitchen. When I did, I saw that Kate was about to sit up. When I reached her, she was sitting on the edge of the bed. She looked up at me and smiled. I told her it was good to see her and, especially, to see “that smile.”

As we walked to the bathroom, she said, “I sure am glad to see you.” Her tone of voice conveyed a sense of relief. It was clear that she was quite confused although she seemed to recognize me. As we returned to the bed, she repeated how glad she was to see me. She said, “What do I do now?” I told her it was still early, that I thought she should try to rest a little longer. As I pulled the covers over her, she said, “Where are we?” I told her we were in our house in Knoxville, Tennessee. We went through these same questions two or three times. Then I asked if she would like me to bring my things into the room and sit with her. She said, “Oh, yes.” That’s where I am and plan to stay until it she is asleep. Then I will slip back to the kitchen. In the meantime, I put on a Jason Tonioli album entitled Finding Peace. Most of the pieces are just piano and violin, and, as the title suggests, they are very peaceful. It is playing softly in the background. If it doesn’t help Kate get back to sleep, it may do it for me right here in my chair.

There is nothing special or particularly unusual about this experience. In that respect, it is a good one in that it captures a rather ordinary part of our lives. It’s not always like this. Sometimes she is much more disturbed by her confusion. Other times less so. It is unusual, however, for her to want me to stay with her. That is a sign of greater insecurity than most days.

There is something else about this morning that is typical. It is the way we relate to each other. She depends heavily on me and looks to me for guidance. This is true most of the time, and that makes caring for her much easier for me. It’s not always like that. There are times like two days ago when she wanted to be independent and resisted my help. That was a rough moment and only subsided when I let her take charge. That helped to re-balance the relationship. When she is on her own to dress, it isn’t long before she asks for my help. That works because I am following her rather than directing. In moments like this morning, she is ready to turn everything over to me. Making a decision about what to do can be a challenge when your mind is completely blank.

The last song on Tonioli’s album, Brahm’s Lullaby, is playing. Kate is now sound asleep. I think I’ll take my morning walk around the house (inside, of course) and listen to my book.

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What Can the Horse Whisperer and Mr. Rogers Tell Us About Caregiving?

In 2011, Robert Redford produced and directed the film The Horse Whisperer. It was based on a real story about Burt Brannaman whose unconventional approach to breaking horses captured the attention of many people like me who know little or nothing about them. My crude interpretation of his method is that he establishes a relationship of trust with horses. He does this gradually in small steps by connecting with them in a non-threatening way. The result is that he achieves success without forcing them into submission but gaining their trust. He thinks this is a gentler and better way to achieve the same end.

In the past year, Mr. Rogers has also been the subject of two films. Each in different ways captures Rogers’ approach to relating to children (as well as adults if we take It’s a Beautiful Day in the Neighborhood literally). It strikes me that his approach with children was very similar to that of Brannaman’s with horses. In both cases, the men are keenly sensitive to the little things that can frighten or comfort horses or children. That includes what one says, how it is said, tone of voice, facial expressions and body language.

As I think about it, both Brannaman and Mr. Rogers have something to tell us about caregiving. As people with dementia decline, the world around them must seem strange. I know that Kate is quite insecure and looks to me for security. Even situations that have been routine for years can be a bit frightening. Yesterday, I took Kate to a hair appointment. Recently she has had trouble getting into the chair for her shampoo and expressed her feelings in a loud audible way. I helped her into the chair the last two appointments. That has worked well. This time she wanted me to stay with her and to hold my hand. During the past year, I dropped her bi-weekly massages and her pedicures because she was frightened by them.

I say this to suggest that Kate’s failure to understand the situations she faces is similar to the way horses and children react when they are confronted by something new. I have learned the hard way that I need to interact with Kate the way Brannaman relates to horses and Roger interacted with children. That doesn’t mean I don’t make mistakes. I did yesterday and was fortunate to make a comeback when I returned to a more sensitive approach.

Yesterday she wanted to be more independent, and I have grown accustomed to doing more things for her. That didn’t mix well. She seemed especially slow in getting ready for the day. She spent almost twenty-five minutes brushing her teeth and washing her arms and face. The washing of her arms and face is normal, but she took longer to do it this time. Several times when she was brushing her teeth and showering, she told me to stop helping her and said, “I am not stupid.” I apologized and backed off. It wasn’t just that I changed what I said. I also changed the tone of my voice and facial expressions. She is very good at reading those. I remained with her but didn’t offer any suggestions. I did help dry her. She appreciated that.

As she often does, she wanted to rest a little. I left her in bed for about thirty minutes before returning to see if she wanted to get up. I was careful not to suggest that she should get up or that I was pushing her. Fortunately, she said she was ready for her clothes. I only helped her when she wanted help.

After she was dressed, she wanted to lie down again. I told her that would be fine. I put on the album from the musical Annie and went to the kitchen. I returned fifteen minutes later to see if she was ready for lunch. She was in a good humor and ready to get up. From that point on everything went smoothly. One would never have guessed that she had been upset with me at all. It took almost two hours from the time I went in to get her up until we left, but it paid off. Rushing her only makes things worse. I know that well but didn’t approach her that way from the beginning.

It was clear from the time she got up that she was moving slowly. I believe if I had begun with a gentler approach, we wouldn’t have had a problem at all. I was impatient at her slowness and the fact that she spent so much time washing her face and arms when she was about to get in the shower. That didn’t make sense to me, but that was not what mattered. It probably made sense to her because she couldn’t remember that she was going to take a shower. At any rate, I have learned that it pays to be in sync with her mood and desires and move from there. I think Brannaman and Mr. Rogers would agree.

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It Takes an Arsenal

We have all heard that it takes a village to raise a child. I’ve also heard a variation of that for caregivers of people with dementia: “It takes a Team.” This idea grows out of the recognition that caregivers need to rely on others for help. One part of the team would be those who are professionals like one’s primary care doctor, other specialists, as well as paid caregivers like care managers and personnel at the variety of care facilities that are cropping up in many communities. Another part would include family and close friends.

I agree that we caregivers need a team. I have that in our medical and dental professionals as well as a host of others who would never imagine they are on the team. I am thinking especially of those who work at the restaurants that serve us. I have made sure that they know of Kate’s diagnosis, and they have been very supportive. In addition, we often run into friends wherever we go. They never realize the importance of these brief encounters in lifting our spirits. I should also mention the people who are strangers like those who have helped when Kate goes to the restrooms in public places. I had one of such experience this past Sunday at a movie theater. I don’t know anything about the young woman, but she made me feel more comfortable. When Kate walked out of the restroom, she was holding the woman’s hand just as I might have done.

Beyond these things, I have also found that it pays to have an arsenal (a bag of tricks) that I can depend on when I face the various challenges that arise in caring for Kate. I have relied heavily on music and social engagement. That has worked well. We have binged on music and eating out. Over the past year and a half, I have increasingly used Kate’s family photo books, especially her “Big Sister” album that her brother Ken made for her. Life changes, however, and it’s good to have other alternatives. At the moment, my reading to Kate is becoming another significant way to provide her with pleasure.

Kate’s self-initiated activities have declined drastically. For a long time she spent most of her time on her computer and working in the yard. When the computer dropped out of the picture, it was replaced with an iPad on which she worked jigsaw puzzles. Then the yard work disappeared. That left her with only one such activity. We are almost at the end of using the iPad, but two weeks ago I started reading to her. Despite the fact that it takes more of my time, it has been rewarding for both of us. I have thoroughly enjoyed reading to her and seeing her response. It is a welcome addition to my arsenal and could become more important in the future.

Thus far we have read The Giving Tree, The Velveteen Rabbit, Charlotte’s Web, a quarter of Anne Frank: The Diary of a Young Woman, and two chapter’s of Erma Bombeck’s Family: The Ties That Bind . . . and Gag. The nice thing is that we can re-read books though I plan to keep my eyes open for new ones.

Reading is relaxing for Kate. It also has an impact on her mood. Though she doesn’t understand everything, she picks up enough to make it a pleasant experience. Last night she started to work on her iPad but soon became frustrated and wanted to go to bed. I believe she was discouraged and looked at going to bed as an escape. Once she got in bed, I asked if she would like for me to read something. She did, and I picked up The Velveteen Rabbit. We had read it several other times during the week, but he enjoys it just as much each time. I enjoy seeing her response as I read. She makes frequent comments that let me know she is listening and, at least, understands what I read in the preceding sentence if not more than that.

Last night’s experience was particularly meaningful to me. It was very much like reading a bedtime story to a child. When I finished, I told Kate I had enjoyed it and thought I would look for some other books like it. She liked the idea. Her frustration was gone. My arsenal is growing.

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Another Unusual Incident

Kate and I went to opera night at Casa Bella this  past Thursday night. I approach each of these evenings with both anticipation and a small measure of concern. These nights (6:00 to 8:30) have played a significant role in our therapy for almost six years. There have only been a couple of nights when Kate didn’t enjoy herself as much as usual. Those have been within the past few months and have related to changes in our seating arrangement and sometimes being part of a larger group. Now I sit beside her. That allows me to help her more easily, especially in whispering to her when she has questions.

If I had thought much about it, I would not have been concerned at all. After all, it is the Christmas season. That meant we had a generous supply of music for the season including a “sing-a-long” with “The Twelve Days of Christmas.” The crowd was caught up in the spirit of the season, and so we were.

We engaged in a little more conversation after the program ended. The result was our getting home a little later than usual. I was eager to help Kate prepare for bed and to take my shower. That shouldn’t have been a problem, but I didn’t anticipate what was about to occur.

I got Kate to the bathroom to brush her teeth, and she got caught up in the process. She always works hard to clean between her teeth even though I haven’t been unable to find anything. (I sympathize with her since I have a space between two of my teeth that seem to have nothing between but bothers me nonetheless. My dental hygienist believes it is where a crown meets the real tooth.) She took more time than usual, at least twenty minutes. She wanted me to watch what she was doing in case she wasn’t doing it the right way. This involved my watching her go from tooth to tooth using her fingernail like dental floss.

When she finished, she washed her face and arms. That wasn’t unusual except that wanted me to watch carefully. She wanted me to know exactly what she was doing. She put great emphasis on the upper portion of her forehead where her hair begins. During this process, she continually pointed her fingers toward me so that I could see what she was getting out. She sometimes refers to “them” as “thingies.” I’ve never been able to see anything but acknowledge that I have seen them.

When she got to the bed, it was time to work on the toes. She runs her fingers up and down between each toe and can repeat this process several times. That night was one of those times. Then she wanted me to do it. I complied. When she got in bed, she began to pull her hair. Several times I started to step away from the bed. Each time, she called me back saying, “I want you to see this.” This incident was not unique except for the duration. I finally got to shower almost an hour and a half after getting home. She seems to be getting more obsessed about pulling her hair, picking her teeth with her fingernail, and cleaning between her toes. I wonder how far this can go.

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Morning Crisis

Yesterday, like a number of days recently, Kate was up at 7:30. That meant I didn’t get my normal walk, nor did I have time to upload a new post. This morning I was up at 5:20. I thought this would be a good opportunity to write a post about an experience we had last night. My plans changed quickly. I was about to walk out of the bedroom when I noticed that Kate was awake. I walked over to the bed to let her know I was going to the kitchen to fix my breakfast. When I reached the bed beside her, I recognized the look on her face. I said, “Are you afraid?” She nodded. I told her I could help her and that she was going to be all right? Then I said, “Would you like me to stay with you?” She said, “Oh, yes.”

She wanted to go to the bathroom. As I helped her up, she said, “You’re very nice to me. You’re the only one I can talk to.” I wasn’t sure if she knew who I was and said, “My name is Richard.” She said, “I know that. <pause> What’s your name?”

After using the toilet, she wanted to brush her teeth. I asked if she were still afraid. She said she was. I asked what she was afraid of. She said, “I don’t know. I don’t know what to do?” She talked a couple of minutes about that and said things like “I don’t know what’s going to happen to all of us.” “I just want to get out of here. I don’t really mean that, but . . .” (She didn’t finish.) “Thank you for helping me. You’re the only one I can talk to.”

I assured her that I could help her, that she could depend on me. I said, “Right now, I think you need to get back in bed and rest. We’re going to have a very nice day.” I started to leave for the kitchen for my computer, and she said, “Please stay with me.” I told her I was just getting my things from the kitchen and would be right back.

As you might expect, I turned on some soft soothing music and sat in the chair beside the bed. It wasn’t long before she was asleep.” I began to think about leaving to fix my breakfast, when she awoke and saw me. She had a smile on her face and said, “You’re here. How nice.” She seemed like herself, but now I feel I should stay a while longer. At least for now, the crisis is over.

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Little Things from the Past Two Days

Each day brings with it a variety of little things that characterize our lives. For example, Kate is losing more of her vocabulary. That leads to her saying things I may understand but are not precisely what she meant to say. Yesterday morning as we walked through the family room, she once again took note of her ceramic cat. I had walked ahead of her a few steps and heard her say, “Kitty Pat. Kitty Pat.” I looked back and said, “What?” She pointed to the cat and repeated enthusiastically, “Kitty Pat.” This is just one example of changes in her speech. She continues to forget common words like salmon, steak, and sweet potato fries. There are many more. By the way, when she stops to look at the cat, she seems to understand that it is not real. Other times I’m not sure. As she looked at it yesterday, she said, “He’s looking at me. Now he’s looking at you.”

At the same time she loses certain skills, she continue to amaze me with her self awareness and, especially, her insights about me. She was a little uneasy when we went to lunch yesterday and asked me to sit beside her in the booth rather than across from her. In a few minutes, I said, “It looks like you are relaxed now.” She said, “Not quite, but I’m getting there.” Then she surprised me. She put her hand on mine and very gently said, “If I were really upset, you would say, ‘You’re going to be all right. Just relax. You’re going to be all right.’” These might not have been my exact words, but they were pretty close. Her tone of voice was “right on.”

Later in the day, she asked where we were. Before I could answer, she said, “I must make you miserable asking you the same question over and over.” She forgets many things, but she clearly remembers things of which I thought she was unaware. It’s not only that she remembers, but she also grasps that it could be irritating. Of course, I told her it doesn’t, and it’s true though I’m not sure she believed me.

She is often concerned about what she should do or say in social situations. This usually comes up before we are going somewhere, but other times it is out of the blue. That happened yesterday as we got in the car after lunch. She said, “It’s really good to see you.” She wanted to know if that was correct. I told her it was. Then I said, “As a former English teacher, you could appreciate that there are different ways you could say the same thing. Some could have slightly different meanings.” I went on to say, “For example, you might simply say, ‘It’s nice to see you.’” I explained that it wouldn’t convey the same degree of pleasure or emotion. Then she asked what she had said. I said, “It’s really good to see you.” She immediately said, “Or I could say, ‘It’s so good to see you.’” Because there is so much that she doesn’t remember or understand, it is easy to think that she wouldn’t be able to grasp something like this. That would clearly be wrong – at least this time.

There is something else that has occurred regularly for a long time. I don’t think I’ve ever mentioned it. She has ridden with me a lot over the eight years since I bought it. We’ve had only one car since December 2013. For the past three or four years she has been unable to identify it at all. The fact that I point and say, “That white car is ours.” doesn’t help. In addition, she doesn’t know which side of the car she is to enter (even when I take her, and I always do.) or whether to get in the front seat where I have opened the car door or the back seat with the door closed. It’s a good reminder of just how much her rational thought processes have diminished. I should add that she has never had any interest in cars. That was long before Alzheimer’s. I know that she knew she drove a Volvo station wagon for a few years, but I’m not sure she ever knew what kind of car I drove.

There is one other thing I should add. I’ve mentioned a lot about her poor eyesight. She frequently will not see specific food items on her plate at meal times. She has salmon and sweet potato fries every Saturday for lunch, but she often doesn’t see the salmon. When the server put her plate in front of her, I am careful to turn it so that the salmon is right in front of her and the sweet potato fries above that. I feel certain her love of fries is part of the reason she sees them. When I point out the salmon, she has great difficulty seeing it even when I use a knife as a pointer and touch it. The surprising thing is that she frequently sees small specks on the table or floor or in the car. They must stick out because there is usually nothing around them, but it is a reminder that her eyes are working. It is the brain that has trouble differentiating different items that are close together.

Let me close with something I’ve said before. We still enjoy ourselves. Yesterday and Friday were especially good days. These days may be waning, but, obviously, it is possible for a couple “Living with Alzheimer’s” to derive pleasure even at this late stage of the disease. I know that everyone’s experience can’t be like ours nor would I deny the low points that are a part of everyone’s journey. From the memoirs of other caregivers, however, I know that our experience is not unique. That should be encouraging to people who have recently received their diagnosis. It’s good to know that life after Alzheimer’s is possible, at least for a while. For us that has lasted almost nine years.

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Alzheimer’s Doesn’t Know It’s a Holiday, But We Do.

Kate and I talk a lot about the many things for which we are grateful. We’ll do more of that today. Let me say first that I am grateful to those of you who take time to read my often rambling accounts of our lives. I hope it provides an accurate glimpse of what “Living with Alzheimer’s” is like for us and that you may be gaining a little insight into the world of Alzheimer’s. The overriding message for us is how well we have gotten along. That easily claims first place among the things for which I feel most fortunate. I only wish that could be true for everyone who lives with this disease, but I am very mindful that others face far greater challenges than we have.

I am grateful for the kindness of family, friends and acquaintances who provide support, often without realizing it. I have also been touched by those who serve us in restaurants and customers in places we visit. Just this week I took Kate to the restroom at lunch. I’m always a little concerned in these situations because she has on several occasions locked a door to the stall or the restroom itself and been unable to open it. Sometimes she doesn’t know where to go once she is in the restroom or how to find the exit door. That day I opened the door and peaked in to see if anyone else might be in there. A lady was washing her hands. I pointed Kate in the direction of the stall and told her I would be right outside the door. It wasn’t long before the door opened and the lady who had been washing her hands invited me in. She told me she was a nurse and would stay with Kate. That wasn’t the first time people have helped in that situation. Little gestures like that have made the road smoother for us, at least emotionally.

It is a beautiful day. The sun is shining, and the today’s temperature will be in the low 60s. I look forward to this day with Kate. It will be the first we celebrate alone. Now don’t feel sorry for us. We will certainly miss being with family, but it will be easier on both of us that we are not traveling or hosting this year. I have an increasing recognition that our time together is limited, and I treasure the good times that we have when it is just the two of us.

Now let me segue to another aspect of our lives. Although we have many “Happy Moments,” they vacillate with more trying ones. Thus far, we have been able to handle each one of those. That includes one we had early this morning.

At 3:00, Kate said, “How do I get inside?” I said, “You’re inside right now. You’re in your own bed.” She wasn’t buying that. She asked again. I said told her I would show her but that it was the middle of the night and thought it would be better to do that in the morning. That wasn’t of any help. Then I told her I would show her. The first stop was the bathroom. Then we walked hand-in-hand through the bedroom, down the hallway outside our room, into the family room and kitchen, stopping in the laundry room. During our walk I tried to comfort her. She kept asking if we were going inside. I assured her that I was taking her inside. I turned her around and we walked back to our bedroom where I helped her into bed.

As I pulled the covers over her, she said, “You’re not going to leave me, are you?” I told her I would never leave her and that I would be right there on the other side of her. When I turned around to walk to the other side of the bed, she must have thought I was leaving. She said, “Don’t leave me.” She seemed very frightened. That didn’t stop immediately. I got into bed, moved close to her, and put my arms around her. She gradually felt at ease. By that time it was about 4:10. She was quiet until 4:30 when she asked again not to leave her. I assured her I wouldn’t, and I didn’t hear anything more from her. I think I went to sleep pretty shortly after that. I know I slept until 6:50 which is unusually late for me, but I know I needed it.

My best wishes for a Happy Thanksgiving to each of you.