Change is Ever Present, But Some Things Remain the Same.

Much of my recent posting has focused on the changes occurring in our lives. That is true, but I don’t want to mislead you. Some of the best things are still with us. I can sum it up by saying this. Kate continues to be the same kind, thoughtful person she always was. As a result, the strength of our relationship hasn’t diminished in any way. In fact, I would say it is stronger than ever.

Last week, I watched a video lecture by David Brooks recorded during his visit to Chautauqua in 2018. A section of his talk dealt with love and referenced the following quote from Corelli’s Mandolin by Louis de Bernieres.

Love itself is what is left over when being in love is burned away. And this is both an art and a fortunate accident. Your mother and I had it. We had roots that grew toward each other underground, and when all the pretty blossoms had fallen from our branches, we found that we were part of one tree and not two.

I think this applies to our relationship as well as most other successful marriages including those of Kate’s and my parents. We had a good marriage before Alzheimer’s, and our roots “grew toward each other.” Now I have discovered that we are “part of one tree and not two.”

There are a number of reasons “Living with Alzheimer’s” has been less stressful for us than for many others. The nature of our relationship has to be one of them, and it has not deteriorated. That could change at any time. Alzheimer’s has changed our lives significantly, but I remain optimistic.

There are many illustrations of the way we have handled the trials accompanied by this disease. Let me mention several that have occurred in the past week.

One night early last week, I had just gotten out of the shower and was about to take a seat in a chair on my side of the bed. This is a relaxing time of the day for me. Kate was sitting up in bed while watching a YouTube video of Rachmaninov’s Piano Concerto No. 2. I assumed she was more engaged than usual because she was sitting up. Normally, she is lying down with her eyes closed and listening. Before I could sit down, she motioned to me to join her in bed. It was about 45 minutes before I would normally go to bed, but I got in bed.

It turned out that she was experiencing two conflicting emotions. She was enjoying the music, but it was also a moment when she was disturbed by not knowing “anything.” She wanted my hand and held it firmly as she leaned against me. I felt it was another time when talk was less important than simply being with her. Within 10-15 minutes, her anxiety was gone. We watched the entire concerto, and she wasn’t sleepy. We followed that by watching a performance of Tchaikovsky’s Piano Concerto No. 1. We were much later getting to sleep than usual but it was another case in which music and the comfort of our relationship solved a problem.

One morning two days later, she woke me around 5:00. She had apparently had a dream in which she had some obligation that morning. She wanted to know what time she had to be there. I told her I didn’t know of anything that she needed to do that morning and that she could relax. For a very brief moment, that satisfied her, but then she asked again, and again, and again. Finally, I suggested that I put on some soft music. I have a variety of music for times like this and turned on the audio. Then I put my arm around her and held her for over thirty minutes. During that time, she relaxed and forgot all about her obligation. She wasn’t asleep but at ease, and I got up for the day.

As she grows increasingly dependent, her desire to be with me seems to increase as well. The past few days she has talked about liking to be with me. On at least one of those occasions, it followed an afternoon with the sitter even though I was in the house most of the time. Before the sitter arrived today, I mentioned that I was going to the grocery store. She told me she didn’t want me to leave. I told her I wouldn’t be gone long and wasn’t going to leave right away but would be in the kitchen taking care of a few things. She accepted that, but the look on her face suggested she didn’t want to.

Yesterday morning was one of those times when she didn’t recognize me as her husband or know my name, but she asked to hold my hand. She said she didn’t really need it, but it made her feel better. She wanted to go home, so we went for a ride in the car. It wasn’t long before she said, “I don’t know how he does it.” She said a few related things, and I asked who she meant. She looked at me and said, “You.” This was far from the first time she has referred to me or herself in the third person. When we returned home, she wanted to tell me something but couldn’t express it. I’ll never know exactly what it was, but I got the impression she wanted to tell me what it feels like not to know anything. I don’t know that I would be able to express it either. I do know that she hasn’t forgotten me as a person whose company she enjoys and on whom she is very dependent.

As an aside, I think she has remembered my name and that I am her husband more often as her dependence has increased. When I got home to relieve the sitter two days ago, the sitter told me Kate had asked about “Richard” off and on the whole time I had been gone. Interestingly, while we were eating lunch today, she asked, “Where is my husband?” several times. We had been talking, but there were moments of silence. She apparently looked at me but did not recognize who I was and felt uneasy. Yes, changes are occurring, but some very important things remain the same. Our relationship, music, her photo books (especially the “Big Sister” album), and The Velveteen Rabbit are among them.

Emotional Times

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

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

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

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

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

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

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

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

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

Feeling Insecure, Dependent, and Appreciative

The past few days Kate has been unusually insecure, at times almost helpless. It has been evident in both her behavior and expressions of appreciation to me. Most of these signs are not new but the degree of her emotions has seemed more intense than in the past.

Thursday morning, I had an appointment for my labs in advance of a doctor’s appointment  later this week. She was with me the entire time except when I stepped into the restroom to give them a urine sample. When I returned, she was very relieved to see me. As soon as we got in the car, she said, “I feel better when I am with you.”

That afternoon, she had an appointment with her stylist for color and a shampoo. I used to sit in the waiting area up front. In the past year or so, I have taken a seat across from her about 10-12 feet away because she sometimes feels uneasy when she doesn’t see me. That worked fine. This time she wanted me to stay closer to her. Once I stood by her, she wanted to hold my hand and did so until time to move back to another chair for the stylist to finish. After making the move, she wanted to hold my hand again.

I was at home most of the time on Friday while the sitter was here. After almost three hours, she called to me and walked into the kitchen. She had a pitiful look on her face and asked, “When will you be able to be with me?” I told her I had a few other things I wanted to take care of, and it wouldn’t be long. She wanted something to eat. I fixed her a slice of cheese toast and a Diet Dr. Pepper. (Those her know her well may recall that she has never liked the diet version, but that’s another change in the later stages of Alzheimer’s. I buy only diet now.) I finished up what I was doing and let the sitter go early again. This is becoming a frequent thing, and it has never kept me from doing anything I had to do. It makes Kate feel better, and that makes me feel better as well.

During the weekend, she was excessive in expressing her feelings about me. She thanked me for helping her so much and emphasized that she couldn’t live without me. Being appreciative is not something new, but the way she has expressed it recently suggests to me that she has a greater sense of the seriousness of her problems than before. I can’t help thinking that having less stimulation during the pandemic has played a role by giving her more time to focus on what she can’t do rather than simply enjoying what she can.

The Ups and Downs of our Present Life

Looking back at the almost nine and a half years since Kate’s diagnosis, I see how gradual Kate’s changes were during the earlier years. We lived as though she were stable and adapted in various ways to make life easier or safer. For the most part, that meant giving up activities that had been an important part of our lives. I’ve mentioned all of them as they happened. The big ones for Kate involved her giving up her computer, working in the yard, and, finally, the iPad. Both of us gradually became less active in church and community work. We gave up all evening activities except for eating out for dinner, and we do that earlier than before. In 2015, we took our last international trip. In 2017, we made our last trip to Chautauqua, and we made our last trips to see our children in 2018.

Although all of these were significant changes in our lifestyle, they occurred slowly over time. Our world was getting smaller, but our daily routine was comparatively normal. That is no longer the case. The pace of change picked up within the past year, especially the past six months and even more during the pandemic. As a result, it is much harder for me to remember many of the details that I would like to report. That means I report on fewer issues that arise on a daily basis. I suspect that I may do less reporting on what a day is like and focus more on specific incidents I am able to recall. With that in mind, here are several things that have happened in the last few days.

After finishing my shower three nights ago, I walked into the bedroom and noticed that Kate was lying almost perpendicular to the headboard. I spoke to her, and she pointed to a section of the sheet beside the outline of her body. She motioned to me to come closer and said, “I need your help.” She pointed again and said, “Read this.” As you might have guessed, there was nothing there but the bed sheet. I hesitated a moment trying to decide what to say. Before I could ask any questions, she again asked me to read it. I took a moment to look at the sheet and pretended I was reading something.

When I finished, she asked me what it said. For a moment, I was puzzled. That must have been obvious to her since she mentioned something about ways that someone could help. I still wasn’t sure what she wanted. After a little probing I learned that she wanted me to help her with a young man and woman who were apparently new to our area. She wanted me to introduce them to other people and give them information that would be helpful about our area. She wanted us to meet with them and asked for my advice about the time and place of our meeting as well as taking charge of arrangements.

As I gave her my recommendations, I began to wonder how long this conversation would go on. It turned out to be very short. When I mentioned that I was available for lunch the next day, she said that was too soon. I told her I would call him and set up a lunch meeting several days after that. She was agreeable to that and thanked me for helping her. She went on to say it was time for her to get to bed. She said this in a way that made it clear that she did not recognize me as her husband.

For much of the time yesterday, she wasn’t sure who I was. That was true at lunch when I said, “I’m not much of a talker.” She broke into laughter. Obviously, I was not a stranger to her.

After lunch, she rested. Two hours later, she started to get up from the sofa. I asked if she would like for me to read something to her. She was receptive, and I picked up The Velveteen Rabbit. Before reading, I showed her the drawing of the rabbit on the book’s cover. She had some difficulty comprehending what a stuffed rabbit is and wasn’t particularly interested. As I proceeded to read, her interest rose quickly. As on other occasions, she responded audibly to quite a few passages. Each time her emotions were appropriate for what I had read.

When I reached the part where the boy refers to the rabbit as real, she asked if I were real. I told her I was. Without hesitation, she asked how I knew. I told her that was a good philosophical question. I went on to say that I felt I was real because I was able to interact with other people, and they responded as though I am real. She didn’t want to pursue it any further, but I thought it was interesting that she asked both questions.

It also made me think about her interactions with her stuffed bear. She cuddles him and talks with him as though he is real. She does the same thing with other inanimate objects like a pillow in our kitchen. On the other hand, she doesn’t always seem to see her bear as real. Yesterday, she was carrying him in her arms as she started to walk down the steps into our garage. I asked if I could hold him. She said, “No, I don’t think that would look right.” I said, “You don’t think that would look manly.” She responded with an emphatic “No.”

The best part of the day came after we finished the book. I reminded her that she had been a librarian and that she must have enjoyed introducing so many children to books. That led to a conversation that lasted almost an hour, during which she did most of the talking. She told stories about her relationship with her students. At one point, I mentioned that teachers have a big impact on their students. That prompted her to tell me about students who had thanked her for what she had done for them. While there is no way for me to be sure, I don’t believe anything she said actually happened. I am sure she was adlibbing, but she enjoyed talking, and I enjoyed listening. The conversation was especially interesting because it showed such insight regarding students, teachers, and their relationships while the facts seemed to be fictional. To be sure, there is some sadness associated with moments like these. At the same time, the nature of the conversation also seemed quite natural, like those we had before Alzheimer’s. At this point in the disease, conversations like that are a pleasure. I count them as treasures.

Kate is Keeping Me Busy.

The other day, I got a message from a Twitter friend who asked how things were going with Kate and me. She had noticed that I haven’t been as regular in posting as in the past. I explained that with the progression of Kate’s Alzheimer’s life was simply getting busier. This past Sunday was a good example of what can happen in a single day.

It began early that morning. I was about to get dressed at 6:30 when Kate woke up and wanted to go to the bathroom. Afterward, I helped her dress and prepared a light breakfast. This was the earliest I ever recall her getting up for the day since she was a teacher and librarian. It was also unusual in that we ate breakfast together for the second time in the past few weeks.

Since she started the day so early, I knew she would want to rest after breakfast. She fooled me. She wanted to go home. I took her for a thirty-minute ride around town.

Once home, we spent an hour and a half looking at one of her photo books and our wedding album. Finally, she wanted to rest. That only lasted 30-45 minutes.

I suggested we go to lunch, but she didn’t want to get up. I told her she looked afraid and said I could help her. She said she didn’t “know anything” and didn’t know what was happening to her. I told her again that I could help and mentioned she had had experiences like this before. I added that in the past she began to improve after getting up. That gave her the incentive to get up although it didn’t reduce her anxiety.

On the way to the restaurant, I put on some music she likes as an effort to calm her. She didn’t pay as much attention as she usually does, and her anxiety won out over the music. She was worried about what people would think of her. She said, “They will think I’m an idiot.” I assured her they would probably not even notice anything. She thanked me and said that made her feel better. Her insight and self-awareness impressed me during this whole episode. She recognized that she was progressively feeling better.

Before arriving at Andriana’s, she said, “I know you’re my husband, but I don’t know your name.” Then she remembered it and was excited. She said, “I think I’m getting better. Maybe I’ll start remembering more.” I assured her that she would. She was bolstered by that.

She was very uneasy as we entered the restaurant. She was still afraid of what people would think about her. She improved quickly when we met the hostess who greeted us warmly. She is one of the most welcoming of the ones we know. This made her feel comfortable.

That didn’t last long. When we took our seats, she was worried, and it showed. Two women at the nearest table noticed something was wrong when Kate started to cry and wanted me to hold her hand.

It wasn’t long before our server came to the table. She, too, is very friendly and told Kate how nice she looked. Tears welled up in her eyes as she profusely thanked the server and told her how much that meant to her. She wanted to stand and give the server a hug, but the server explained and kept her social distance.

Kate continued to talk about the way she felt. She noted that she didn’t know who I was but felt like she knew me. Almost within seconds, she called me by name. She was encouraged. I picked up on that and told her she would continue to feel better; however, I wasn’t surprised when, moments later, she couldn’t recall my name or that I was her husband. She continued to feel more comfortable as we ate our meal and was fine long before we left.

Once we were home, we started on one of her photo books but soon stopped for her to rest. When she finished resting, she looked at me and wanted to know who I was. She wasn’t worried and seemed comfortable with me. She invited me to sit on the sofa with her. I said, “I’m Richard, your husband.” She didn’t buy the husband part at all and laughed. I didn’t try to convince her; however, I picked up our wedding album and proceeded to go through some of the photos. I was never sure that it had any impact on her memory, but she accepted what she saw without any questions.

We had a little time before dinner, and I suggested we call a longtime friend of hers who was her matron of honor. She wanted to call, but she told me she wanted me to do most of the talking. To my surprise she did quite well. It was not a lengthy conversation, but she seemed at ease and enjoyed herself.

Kate has always been appreciative of my care for her. Periodically, she makes an extra effort to tell me how much that means to her. She was like that at dinner that evening. It means a lot to me that she is appreciative, but I feel a touch of sadness at moments like this because I think it is heavily driven by a recognition of her dependence on me.

After dinner, she said, “Are you ready to go?” I knew that was the signal that she was ready to “go home.” We went out for another drive “home.”

We returned thirty minutes later and went to the bedroom for the remainder of the evening. It was later than usual, and I was eager to get her ready for bed. She is usually ready herself, but that was not true this time. She started arranging the things on her bedside table. Ordinarily, that wouldn’t be a problem. This time, however, she seemed obsessed about getting it just right. She invited my participation as she created a new arrangements and stood back to give it a critical eye. After almost thirty minutes, I was ready for my shower and wanted to take care of getting her in her night clothes first. She didn’t want to be rushed. Finally, I told her I was going to take my shower and would help her after I got out.

When I turned on the shower, she called me. She wanted help with her night clothes. I turned off the shower and got her into bed. I also turned on YouTube for music videos to entertain her.

After my shower, I took a seat on my side of the bed and read a book. Less than an hour later, I turned off the TV, turned on some soft music on my audio system, and prepared to get in bed. It turned out that Kate was engrossed in the YouTube music and very disappointed I had turned it off. I turned it on again and got in bed.

Kate was sitting up in bed with her back against the headboard. She continued watching the music videos for another hour before calling it a night. It was a long day for both of us.

Not every day is like this, but increasingly I am devoting more attention to Kate while at the same time trying to keep up with household responsibilities and other personal activities. This does create more stress, but I am far from overwhelmed at this point. That is because I back away from other things I need to do. One of those is writing new posts. I’m all right with that because I think I am capturing enough to convey what “Living with Alzheimer’s” is like for us.

A Shift from Confusion to Enjoyment

It is 2:00 Sunday afternoon as I begin this post. Kate and I returned from lunch an hour ago. As is her custom, she took her place on the sofa in our family room and has been resting ever since while I busied myself with several tasks on my laptop in a chair across from her.

She was asleep for almost an hour before waking and looking through a photo book our son Kevin had made of a trip we made to New York City in 2015. We had taken him and his youngest son along with our daughter Jesse and her twin sons. It was the last big trip we took. Kate doesn’t often browse through the book, and I was surprised to see her so engaged with it. She talked to herself all the way through it. I wasn’t clear whether she was awake or asleep, but she enjoyed herself. I didn’t pick up everything she said. It didn’t appear that she recognized it as a book with photos of people she knows (knew?). Her comments were just about what she saw. When she finished, she closed her eyes a few minutes then opened them and said, “I like this place. I really really like it. Ahhh.” I caught her eye and said, “You look happy.” She said, “I am. Are you?” I said, “I’m very happy,” and I was.

The day didn’t begin this way. When I first heard her this morning, it was 9:45. She looked like she was contemplating whether or not she should get up. I said, “Good morning. It’s good to see you.” She didn’t give me the smile I was hoping for. Instead, it was a look that suggested she had no idea who I was and wasn’t sure she wanted to know.

It didn’t take long to discover that she seemed wide awake but unsure of what she should do. I told her it looked like she was about to get up and said I would be glad to help her. She wasn’t sure. I told her I could get her clothes for the day and make breakfast for her. She hesitated. Then she asked me if I would take her home. I told her I would. That was all she needed.

I got her up and to the bathroom without any difficulty. She was perfectly comfortable with me throughout the bathroom routine and getting dressed although she never gave any sign of affection or strong feeling about me.

The first sign of happiness came when we walked into the family room. She first stopped to look at the African violets. Then she saw the poinsettias that are still healthy, if not completely red, after six months. Next she took interest in her ceramic cat and then a photo of our son when he was about 8 or 10. She was beginning to cheer up.

By the time we got to the kitchen for breakfast it was almost 10:30. I decided to take advantage of her being up early and get an early lunch at Andriana’s; therefore, I only gave her juice and a small bowl of blueberries and raspberries. We have three anniversary cards on our kitchen table. At almost every meal she likes to look at them and have me read them to her. It is interesting that even when she doesn’t realize that I am her husband, reading the cards does not strike her as a surprise. That was the way it went this morning.

While she was eating, she seemed to become increasingly at ease. She hasn’t mentioned my taking her home again. That continued on the drive to the restaurant. We enjoyed our time together at lunch. At one point, our server introduced us to her 11-year-old daughter who happened to be there. As they walked away from the table, Kate said, “Mr. and Mrs.? Does that mean . . .” She didn’t finish the question. I said, “Yes, we are husband and wife.” She was quite surprised. I was even more surprised that she remembered the server’s referring to us as “Mr. and Mrs.”  I told her we had just celebrated our 57th anniversary a week ago. Then I said, “I hope that doesn’t bother you.” She said it didn’t, and it looked as though she were telling the truth. This led to a wonderful conversation about the good times we have had.

This kind of transition often occurs in the morning. It begins with her having a blank slate with respect to her recollections of anything. That leads to a feeling of concern that is sometimes very mild. Other times it is more intense. In every case, she ultimately comes out of it as she is exposed to more experience with her surroundings. She begins to feel at home.

As I close this post, she is once again looking at the NYC photo book. She just said to herself, “Isn’t this wonderful? <pause> Let’s see who all is in here. <pause> Okie Dokie. <pause> You’ll love it. <pause> Let’s see. Just a minute. Let me see. Hey.” She is obviously happy, and I am happy to see her enjoy it by herself. That is a rare event.

An Update on “Knowing” Me

Tuesday got off to a better start than Monday, but there was a blip that afternoon. Kate had been resting on the sofa, but I could see that she was awake. An old Ronnie Milsap album was playing, and he was singing “What a Difference You Made in My Life.” I walked over to Kate and said, “That’s what I could be saying to you.” She said, “What?” I explained and she gave me a dirty look. I realized that she hadn’t recognized me, but I was startled and said, “Help me understand. Why you did that?” She said, “I don’t know,” a stock answer for almost everything. Then I said, “I think I understand. You don’t know who I am.” She said she did, and I said, “Who?” She said, “The girl across the street.”

I didn’t tell her otherwise and took my seat again. In less than three or four minutes, she made an abrupt change in mood. She looked at me cheerfully and sat up. She started to stand but then picked up two of her photo books and wanted to take them home. She asked me to put them somewhere. I took them. She found several other books she wanted to take with her.

Then she wanted to go to the bathroom. She gave me a smile and cheerfully spoke to me as though the previous incident had never happened. I am sure she had no recollection. I showed her to the bathroom. When she was finished, I thought we would get ready for dinner. Instead, she got in bed and pulled the sheet over her. I was concerned that she might not get up, but she surprised me. Only a few minutes passed before she got up on her own, and we had dinner. She seemed just fine. That didn’t mean that she recognized me as her husband, but she was as friendly with me as she normally is. The following day we had a similar experience that was just as short-lived.

At least twice yesterday, she spoke harshly to me and then apologized. One of those times we were in the car, and she said she didn’t know why she had responded that way. I don’t recall her exact words, but she had a concerned look on her face and said what I interpreted as a recognition that something is the matter with her that causes her to behave this way. That fits with so many other signs of her self-awareness.

I’m not quite sure what to make of this. It could be like other things that occur once or twice and not again, or it could be the beginning of a progression of her Alzheimer’s that only gets worse. My guess would be it’s something that will get worse though I think her dependence on me and the positive feelings derive from that relationship will last a long time. At least that’s what I’d like to believe.

Very Talkative at Latest Doctor’s Visit

Last week, Kate had a regular appointment with her primary care physician. She sees her doctor every four months though covid-19 delayed this one by ten weeks. The only thing that wasn’t routine was Kate’s behavior. She was unusually talkative.

As always, the doctor began by speaking directly to Kate. First, she asked a general question about how things were going. Kate said, “Fine.” Then she asked more specific questions, none of which Kate was able to answer. After the last question, the doctor asked if she could get my thoughts. I had sent her an update in advance of the visit, but I mentioned a few minor changes.

Something I said prompted Kate to jump in and say something complimentary about relationship. The medical intern who had accompanied the doctor asked how long we had been married. Kate turned to me, and I mentioned that our 57th anniversary was coming up on Sunday.

Then Kate took the lead. She began what was a lengthy (for a doctor’s appointment) description of my care for her and the closeness of our relationship. It must have surprised the doctor who had never her heard her talk so much.

It was noteworthy to me because it came after several other recent experiences at home when we have had long conversations in which she was the primary speaker. In those cases, everything was fabricated, arising out of an apparent delusion. This time it was because the subject matter is one with which she is very familiar and, thus, about which she is able to speak comfortably, if not accurately.

In a way, it both pleased and tickled me. I say pleased because it’s always nice to hear your spouse say good things about you. I also thought she beautifully conveyed the nature of our relationship to the doctor. It tickled me because she has always expressed her liking for things that are not “overdone.” I’m pretty sure that if she had been an outside observer, she would have said this went several steps too far.

At the time, I didn’t make too much of it, but since then she has been much more talkative. As I often do, I wonder why this is occurring and how much more may be in store. I reported that in the last post and plan to report more on that topic in a post about yesterday.

A Rare Conversation

Despite a few issues I wish Kate hadn’t experienced, the past week has been a good one. There is one moment that stands out . We were seated on the sofa in the family room. I think I mentioned our 57th anniversary that is coming up on May 31. We talked about the good times we’ve had together and how fortunate we have been.

I don’t remember her exact words, but she expressed appreciation for my taking care of her. She went on to talk about the problem she has and that I had helped her get through it. She never mentioned Alzheimer’s, but the way she talked it sounded like she understood she has a serious problem. She conveyed that she thought she was getting better and might get over it. It has been clear to me for a long time that she is aware she has a problem, but the tone of this particular conversation was different. In other conversations she has appeared disturbed. This time she seemed more resigned and accepting of her situation.

I told her that no matter what may happen that she could depend on me to be with her. We shared our thinking that everyone faces trials and that our relationship would be a source of strength for us.

Kate has said almost nothing about her Alzheimer’s since the first few weeks or months following the diagnosis over nine years ago. Except for my accepting the role of planner, we have put our emphasis on living in the moment. I believe that has paid many dividends in the years since. As someone who is more open about my life, I have wished many times that we could have had periodic conversations like this very brief one. Even this one was a bit oblique. At this point, she doesn’t know the real problem or what lies ahead, but it was the clearest sign of her recognition that “something” is wrong, that she is grateful for my help, and that, together, we will make the best of it. We are in complete agreement.

What Comes and Goes But Never Disappears?

The other day, I received the following reply to one of my tweets. “It is interesting how some with Alzheimer’s do not know your name or relationship but know who you are and that you are their special person. I have no doubt that Kate knows you are her special person.”

I, too, have no doubt that I am Kate’s “special person.” That is one of many things that I didn’t anticipate nor understand when we started this journey together. I won’t say that I fully understand now, but I do recognize that “knowing” someone is much more complex than I originally thought.

From the beginning, I knew that Kate would forget me, but I didn’t think about it in any detail. It was just something I envisioned as one of the saddest moments I might encounter.

I remember the day I discovered that my mother didn’t “know” me. She and I were talking while my dad was in another room. She had mentioned not having any family. I said, “What about your husband?” and she said, “I don’t have a husband.” I was stunned. I hadn’t noticed anything in her behavior that would suggest she didn’t know him. I asked about her sons. She said, “I don’t have any sons.” That blow was softened by her answer to my previous question, but it still caught me off guard.

More specifically, I was surprised because she almost always related to me so warmly and repeated something of a mantra. “You’re such a nice boy. You always were.” I didn’t understand how this could be. It made me wonder how long she had not known me as her son. How had I missed that?

I understand a little better now. At least, my experience with Kate has made this seem perfectly normal (that is, for someone with dementia). In addition, my learning about the difference between rational and intuitive thought or abilities has been powerful in facilitating my understanding. Knowing my name and relationship requires rational abilities, and she has lost those. Developing a comfort level and feeling heavily dependent on me requires something different, her intuitive abilities. Those abilities allow her to sense whether she likes me, trusts me, and depends on me. It is those abilities that will last a long time. For some PWD, they last forever.

Like many people, I thought forgetting me would just occur one day and that she would never remember me again. I quickly discovered memory for names, places, etc. comes and goes. At first, the loss of rational memory occurs infrequently but gradually increases. During the past few weeks, Kate has had greater difficulty with her memory of many everyday things like fork, napkin, and Dr. Pepper. In the past few days, she has had times when she couldn’t remember anything about her parents. In addition, her memory of my name and relationship has been even harder for her to recall than in the past; however, she is still comfortable with me though curious about who I am.

Something new has occurred in the past few months. It reminds me of something similar to an alter ego. We had a good example yesterday morning. I noticed on the video cam that Kate was about to get up. When I reached her, she seemed wide awake, quite unlike most mornings. She greeted me enthusiastically and was very talkative. I decided to take advantage of that. Instead of proceeding to get her up, I sat down on the bed beside her and talked with her. We had a beautiful 15-20-minute conversation. I was taken aback, however, when twice she mentioned her husband. Both of them were positive references. Until hearing this, I would have sworn she remembered both my name and our relationship.

As I suggested earlier, this is not the first conversation in which this has happened. I expect it will happen again. Perhaps I will be less surprised next time; however, the point I want to make is that she had two separate memories of me. One was the person with whom she was conversing, someone she recognized and with whom she was very comfortable and liked. The other was her husband who was not present but was also someone with whom she had a similar comfort level. The difference was only the distinction in our “official” relationship. He was her husband, and I was her “friend” (?).

I should add that she has often thinks of me as her father. That first happened a couple of years ago. It almost always begins with her asking, “Are you my daddy?” I usually answer with something like, “Would you like that?” or “I’m happy to be your daddy.” Then she smiles and calls me “Daddy.” After that it seems totally forgotten until the next time.

Until I was part of this conversation and several others like it, I never imagined this happening. It is one of many things that can seem strange or impossible, but with dementia almost anything is possible. It certainly adds another layer of complexity to the concept of “knowing” someone. Knowing me comes and goes: nevertheless, in some ways, it never disappears.