Posted on

Stunned by a Conversation

You might think that by now nothing Kate does could surprise me, but a conversation she had with her sitter yesterday did just that. A few times Mary has mentioned that Kate has been talkative, but this was the first time I was home to get a better idea. I was stunned, not that she was talkative but that she controlled the conversation so well.

Since Kate normally wants to rest after lunch, I assumed that she might nap after Mary arrived. That proved to be wrong. The two of them began to talk as I went to the kitchen to work on my computer. I could hear their voices but wasn’t able to understand what they were saying.

I watched a video of a lecture at the Chautauqua Institution. When it ended an hour later, they were still talking. Kate was clearly taking the lead. The way she asked her questions wasn’t just like they were two friends in conversation. It reminded me of a sympathetic journalist conducting a conversational interview, giving her own thoughts about the issues they discussed.

Twice I walked close to the doorway to get a better idea of what they were saying. I heard Kate ask her about her husband and their relationship. She also talked about our relationship. Kate raised the issue of values, and that led to an exchange over relationships with other people. At one point, Kate asked her about her church. I have no idea what else they discussed, but the total time they talked was an hour and fifty minutes.

I didn’t listen long. It was still hard to follow everything they were saying, but I was struck by Kate’s command of the conversation. She would ask Mary a question, listen to her answer, ask follow-up questions and then express her own thoughts. Kate and I have had a number of somewhat similar conversations. During those, Kate has done the talking, and I was a facilitator. In addition, much of what she has said to me was based on a delusion. Yesterday’s conversation was back and forth more like two friends having a pleasant conversation rooted in reality rather than a delusion. I suspect a person overhearing it might not have recognized that she has Alzheimer’s and certainly not in the last stage. It took me by surprise. I wish I could have heard more clearly. I know she stumbles over her words when she talks. She must have done that, but I didn’t detect any sign of it.

It made me think about the difference in the relationship that she and I have compared to her and Mary. Our relationship is dominated by my role as a caregiver. She looks to me as the person in charge who has the answers to her questions and knows what to do when she is in doubt. It may seem strange, but I think she sees Mary as more of a friend than a caregiver. I like that.

To use an old expression, to me that makes Mary “worth her weight in gold.” Kate no longer has any close friends. They have either died or moved out of town. We get together with other people (at least until covid came along), but couple relationships can be quite different than getting together with a close friend. It is harder for Kate to play a significant role in group conversation. Part of that is because I am more of talkative than she is and generally take the lead. Along with that, Kate looks to me to do just that because it takes the load off her.

I have seen a number of other situations in which Kate has been able to converse easily with another person. She handles herself well and did that with Mary yesterday. She is not always in the mood to talk. It’s been almost three years since Mary became her Wednesday/Friday sitter. To the best of my knowledge yesterday was one of only a handful of times when that coincided with Mary’s being here, but I hope she will have more conversations like this in the future.

Posted on

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.

Posted on

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.

Posted on

Busy Days

I have felt rather busy the past three days. Most of that has involved Kate directly. Two of those days she was up early for breakfast. She rested periodically during the day, but she required more attention during those times she was up. We’ve had a full range of experiences including highs and lows.

One of the highs involves another long conversation during dinner two nights ago. Again, it was one in which I was only a listener/facilitator. It started when she asked “the name of this place.” I told her it was a house and that it had an address but not a name. Then she asked my name. The manner in which she asked told me that while she was comfortable with me, she didn’t recognize me as her husband.

She made a few comments about our home. Then I asked her to tell me about her mother. She took a moment to think. It was obvious that she couldn’t remember the information that would help her answer my question, but she did say that her mother liked to help people. That is something that she often says.

That initiated a long conversation about how people treat one another. It was a rambling conversation, much of which I didn’t understand. She frequently searched for words. What I felt was most significant about it was that she was enjoying heerself. That’s why I would consider this a Happy Moment.

The high point of that day occurred after she had been in bed for over two hours. I had just finished my shower. When I walked into the bedroom, I found her standing in front of the TV watching a YouTube video of a duet from La Boheme sung by Jonas Kaufman and Anna Netrebko. She was emotionally engaged. It’s a favorite of mine, and I stood there watching with her until the end of the duet. Although Kate and I have always enjoyed music together, her preferences have been for musical theater and less for classical, especially operatic performances. Since her diagnosis and our binging on music, her musical tastes have expanded tremendously. It has been especially pleasing to share the joy of music with her. Thus, this moment standing in front of the TV in the dark and in our night clothes was a special moment.

That wasn’t the end. The next video to play was the second movement of Rachmaninov’s Piano Concerto No. 2 played by a woman I didn’t know. That movement is another favorite of mine, one that I have included in my “soothing music playlist” I use with Kate. By this time, Kate wanted to sit down. We took a seat on the bench at the end of our bed to watch the performance. The audio alone is enchanting, but the addition of the video of the pianist and the conductor and orchestra added immensely to the intensity of feeling. When the piece ended, I turned off the TV, and we went to bed. It was a beautiful way to end the day.

We have also had some trying moments. I’m thinking specifically of getting ready for bed. Before Kate gave up her iPad, she used to work jigsaw puzzles from the time we got home from dinner until getting ready for bed. At some point, she would get tired or I would tell her it was getting to be bedtime. Then I would help her get ready. Occasionally, she was still wrapped up in her iPad and didn’t want to stop.

The loss of that activity has left a void in her schedule. She has gravitated to getting in bed shortly after dinner and, since Covid-19, after our nightly drive around town. That means she gets in bed as early as 7:15. She is rarely asleep before I get in bed between 9:30 and 10:00.

That has gone rather smoothly until the past week or two. She is still eager to get in bed, but she doesn’t want to take off the clothes she has worn all day. Most days there is no problem. When there is, I have to carefully coax her, and I am not always successful. In those cases, she can be adamant about not cooperating. We’ve had trouble the past two nights. I hope this is not going to become a serious problem.

There is one other bedtime issue. Within the past couple of weeks, she has been insistent on my running my fingers between her toes, pulling strands of her hair, and also running my hands across her body. She seems to be concerned that there are “things” between her toes or on her body that she wants removed before going to bed. The problem for me is that it often comes at a time when I am beginning to wind down. I have been complying although she doesn’t think I always take it as seriously as she thinks I should. She will demonstrate how to do it and then ask me to try again.

I know these are minor issues, and I hope they stay that way.

Posted on

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.

Posted on

The Rest of the Day

I am still not ready to conclude that our Covid-19 pandemic is totally responsible, but Kate is clearly going through changes. As I reported yesterday, some of the changes are quite positive. She is definitely more childlike, and that is accompanied by pleasurable experiences for both of us. That is what happened yesterday morning. She was cheerful and enjoying everything to a greater extent than normal. Were I a better writer, I would have been able to more effectively convey that experience as we went through her photo books and then our old photos around the time of the birth of our first child. Both of us had a great time together.

The good news is that it didn’t end there. After her second rest of the morning, she was alert and happy. It was a little early for lunch, so I suggested that we read The Velveteen Rabbit. I wish I could give you an adequate description of her enthusiasm. She responded audibly throughout the entire book. The surprising thing to me was that her responses, although stronger than one might expect for an adult, seemed to be appropriately matched with the story. I believe she was getting the message in her own way.

The rest of the day went well although it was not nearly as uplifting as the first part. For the first time in six weeks, we got haircuts. On days when she gets color, she goes first. Then while the color sets, the stylist takes care of my shampoo and cut. Ordinarily, Kate works jigsaw puzzles on her iPad. Because she has given up her iPad in the past few weeks, I didn’t take it with us. Instead, I took one of her family photo books to look through while the stylist was taking care of me. When she finished, we both walked over to Kate’s chair. She was holding a towel in her hand and using it like a pen to write a note to someone. She didn’t want to stop to get up and have her hair rinsed. She was confused as to how to say what she wanted in her note. She asked me to help her. I picked up the towel and used it and read aloud what I was “writing.” She was pleased.

I had taken a seat a few feet away from the two of them but separated by a partition that was about 4 ½ feet high. Kate was getting along quite well with the stylist, but quite a few times she asked where I was. Each time the stylist told her, she immediately forgot and, moments later, asked again. Kate and I both wore gloves, and I wore a mask. Kate also repeatedly asked the stylist if she could take off her gloves. I was impressed with this because she had automatically taken them off at the restaurant on Sunday. I wonder if she retained some awareness that she was supposed to keep them on. I suspect it was really because she is so unsure of things that she asks about almost everything.

The day had gone very well until I took my shower. I left Kate in bed watching YouTube videos. As I got out of the shower, she opened the bathroom door. She was obviously confused. I asked what she wanted. She said she didn’t know. I told her to give me a few minutes, and I would help her. She started to leave the bedroom. I asked her to stay so that I could help her. She repeatedly asked me what she could do. I told her she could get back in bed and listen to the music on the TV and that I would be right there.

When I was finished, she was in bed but still confused. Typically, I would sit in a chair on my side of the bed and read or work on my laptop before joining her. I decided it would be better to put on a DVD of Les Miserables and get in bed with her. I thought watching together might divert her attention from her confusion. In the long run, it did. She didn’t show any signs of being disturbed, but she didn’t watch. I’m not sure how much she listened.

I turned it off less than an hour later and put on some very soft music on our audio system. I snuggled close to her and told her I loved her. She didn’t say anything, but she did put her arm across my chest. In a few minutes, she asked my name. I told her. She seemed perfectly at ease. It wasn’t long before we were asleep.

Posted on

A Nice Way to Start the Day

We’re off to a good start today. At 7:15, just as I was beginning my morning walk, I saw on the video cam that Kate was about to get out of bed. When I got to the bedroom, she seemed wide awake and wanted to get up. She was confused but cheerful. The only problem we encountered was getting her on the toilet. It was a challenge explaining that I wanted her to sit on it. It was only when I physically assisted her that she was able to do it.

I got her dressed rather quickly and we went to the kitchen for breakfast. Afterward, I took her to the family room where we went through one of her photo books. She expressed an unusual degree of enthusiasm and several times commented on how happy she was. When we finished, she wanted to rest.

I decided to take advantage of that and prepared to begin my walk. I walked only a few minutes before she started to get up. I don’t ever recall her getting up so soon after beginning to rest. She was still in a very good humor. I got my laptop and showed her photos taken while she was pregnant with our first child and the time of her birth. She was quite interested. As she had done earlier, she mentioned how happy she was. At one point, she said she wanted to tell me something. She said, “I just want to thank you and all the others for doing this.” As often happens, she apparently felt she was in someone else’s home and was being entertained by a group of us. I didn’t ask her to explain.

I wasn’t surprised when she wanted to rest again. I took her to her recliner where she is asleep. I’m not sure how long she will rest. I think I will go back to my walk, but I feel good about the way our day has started.

Posted on

A Very Good Day With One Strange Thing

It’s always good to be able to report the especially good days that Kate and I continue to have. That never means they don’t include sad, troublesome, or strange experiences mixed with all the good. The contrast between the good and not-so-good has never been more striking than the past two days.

I consider a day to be good when Kate seems especially happy all or most of the day. Friday, she began the day cheerfully and showed no obvious indication that she was disturbed over any confusion she may have had. She didn’t ask where she was or who I was. I didn’t go in to check on her until just before noon although the sitter was to arrive at 1:00. She was awake and got up easily. We were eating lunch when Mary arrived.

The transition from our being together and then handing her off to Mary has gotten smoother over time. It has been even better since we have been sheltering. I think that is a direct result of my not leaving immediately when she arrives and the fact that I am still around much of the time she is here.

About forty-five minutes before Mary was to leave, I overheard Kate get up from her rest and begin a conversation. Then I heard her ask about the bathroom. Because we still try to maintain physical distancing while the sitter is here, I walked into the room and asked if she wanted to go to the bathroom. Kate was pleased to see me. I feel sure she had forgotten I was still in the house.

When we walked back into the family room, Kate greeted Mary warmly and said, “Who are you?” I said, “This is your friend, Mary. She stays with you when I am not here.” I added that I still had a few things I wanted to take care of in the other room and left the two of them together. They engaged in an easy-going conversation.

I ended up letting Mary go about twenty minutes early. When I did, Kate thanked Mary for being here and went on to say a number of good things about her. After Mary was gone, Kate told me she really liked her.

The day had gone well, so I was surprised when we had a strange experience after she had gotten in bed. I had turned on some YouTube videos of Andrea Bocelli. She relaxed for a short time and then said she needed my help. I went to her bedside, and she showed me her hand and said, “See that?” I didn’t see anything but told her I did. She wanted me to pull back the covers and proceeded to take off her night gown. Then she gave me careful instructions about running my hands over her forehead, around her neck, over and under her arms and down to her feet. She was very serious about this as though something harmful was on her body. When I finished, she was fine.

It was almost two hours before I went to bed. She was still awake. I don’t know whether she waits for me to come to bed or she has rested so much during the day that she isn’t sleepy. I think it’s the latter, but she is always glad when I join her. It’s a good way to end the day and is typical even on days that haven’t gone as well as this one did.

Posted on

Kate’s New Friend

Quite sometime ago, a Rotary friend whose wife has Alzheimer’s, asked me if Kate enjoyed stuffed animals. He said his wife loves them, and he had given her a collection of them over the course of her disease. I told him Kate had never had a particular interest in them but enjoys children as well as cats and small dogs. I don’t think I mentioned the ceramic cat in our family room. She’s always been fond of him and for years kept him snuggled around the toilet in the bath off our laundry room. I moved him to the family room a couple of years ago. She sees him more often now and almost always stops to greet him in the morning.

More recently, I’ve thought of getting her a stuffed animal, but it was one of those things I never got around to doing. That changed a week ago but not because I finally took action. A colleague at the office brought us dinner last week and along with that a stuffed bear for Kate. He (she?) was an instant hit. Since he entered the picture at a time when her memory is weak, she doesn’t usually ask for him. There has been one exception. I don’t recall the exact circumstances, but she had been holding him a few minutes before and went to our bedroom. She said, “Where is he?” I said, “Who?” She answered, “My little friend.”

Her interests change a lot from day to day and, sometimes, from moment to moment. I wondered how long her fascination would last. Today marks a full week since the bear became a part of the family, and her interest has not diminished. She loves holding him in her arms and often talks to him. There are a variety of situations in which she has been holding him but then does something else that makes that difficult.

One of those times is eating dinner. Each night I take the bear from her and rest him against a pillow on the window seat next to the table. I chose that because Kate has been taken with the pillow she thinks is a person. Since placing the bear, she hasn’t “seen” the person.

Anytime she has been holding the bear, and it is time to get a takeout meal, she wants to take the bear with us. He has even made a couple of trips to the bathroom with her.

We haven’t settled on the bear’s gender but may be coming close. The other day Kate said she thinks it’s a girl, but she slips back and forth between referring to “her” as “he” or “she.” We’ve talked about a name, but that, too, is unsettled. Two days ago, I did a search on girl’s names and read quite a few to her. The only name Kate liked was Charlotte. I like it as well, but I keep thinking it is a better name for a spider. (Sorry about that. I couldn’t resist.)

So far, Charlotte has been a friend to hold while Kate is seated or resting, but I’m also exploring its therapeutic benefit. Yesterday, for example, she was confused when she awoke. I brought Charlotte to her and used her a little bit like a puppet to see if I could relieve any of her anxiety. I discovered there is a spot at the back of the bear’s neck that, when pressed, causes her head to nod. Similarly, squeezing her around her waist causes her arms to move up and down. It didn’t take but a moment for Kate to take Charlotte in her arms. She felt better.

I’m not surprised that the bear has been so well-received. Kate is definitely more childlike now. I suspect we may find that Charlotte provides increasing comfort in the days ahead. Everyone needs a friend.

Posted on

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.