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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.

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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.

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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.

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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.

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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.

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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.

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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.

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Kate is Like a Child.

I suppose everyone has experienced and been delighted by the innocence of children. As a youth and during most of my adult life, I didn’t give much attention to children except for our own and those of family and friends. As I aged, I developed a greater appreciation of the gifts they bring us. They haven’t developed the sensitivity adults have about “proper” behavior. They behave and speak as if it only matters to them and no one else. They express what they feel so naturally.

Kate has always been interested in children. The nineteen years she served as our church’s volunteer librarian were especially fulfilling for her. Much of her work involved children either directly or indirectly. She would have kept her responsibilities as librarian had it not been for her Alzheimer’s. She realized before her diagnosis that she was no longer able to fulfill her position the way she thought she should and resigned.

During the past nine years, her interest in children has become a fascination for her. She enjoys watching them wherever we go and often speaks to them and compliments the parents for having such beautiful children. That has further increased my own appreciation of them.

That leads me to think about Kate. For the past three or four years, she has been somewhat more childlike herself. Increasingly, she behaves with me much like a child with her parent. That is expressed in several different ways.

The most typical example is her wanting to show me little things she has done. She seems proud of herself for what she is doing and wants my recognition. She likes me to watch as she pulls strands of her hair and runs her fingers between each of her toes to get “them” out. She asks me to look at her as she picks her teeth with her fingernails thinking there is something is stuck between them. She is sensitive about her skin and daily runs her fingers across the skin of her arms and legs and shows me her hand and says, “See them.” I try to pay attention and reinforce her belief that she is doing something good.

Above all, her most childlike qualities involve her expressions of enthusiasm for things she enjoys. Her pleasure over the beauty of flowers, trees, shrubs and house plants is the best example. The arrival of spring has brought daily moments of pleasure. She loves to share her enthusiasm with me and sometimes says, “Look at the pink (green, yellow.) “Do you see it?” I translate her question as “Won’t you share this beautifuI moment with me.” I never tire of seeing how excited she is almost every time she walks in our family room. That is particularly true when she sees the two small pots of African Violets. She also takes time to admire the four Poinsettias that have survived the winter. Occasionally, she sees the hydrangeas at the far end of the room and walks over to get a closer look. If she turns around after admiring them, she sometimes is surprised to see the Poinsettias again. I don’t ever recall seeing any sign that she is aware of having previously seen them or any of the other plants prior to that moment.

The newest source of pleasure involves her food. This has only occurred since being homebound. It seems surprising because the meals I prepare are very simple and most of our takeout meals aren’t the same caliber of those we have eaten at the restaurants. She rarely leaves anything on her plate. The exception would be the skin of apples and tomatoes as well as the crust of her bread.

She always wants to share her pleasure with me. It never dawns on her that her entrée and mine are almost always the same. Even when I tell her, she often says, “Try it. You’ll like it.” and passes her fork with a sample for me to taste.

It’s not just that she likes the food. She is animated and talks about it during a large portion of our meal. She liked her meals when we were eating out, but it was usually a special dessert that she talked about most. I never thought she was at all inhibited in a restaurant, but, perhaps, she feels even freer to talk when it is just the two of us at home.

Another possibility is that it is simply a side effect of her Alzheimer’s. She has forgotten most of the foods we eat. For a while, that was limited to a few things like pizza and pepperoni. Dr. Pepper has always been her favorite drink, and she wouldn’t drink the diet version. Now I only buy diet. It doesn’t make any difference even when she is looking at the bottle from which it was poured. She has also almost forgotten the name Dr. Pepper except to recognize it when I offer it to her. She raves about how good it is with almost every sip and then asks, “What is this?” We go through this multiple times during a meal. I suspect that is happening with all the other items on the table. As far as she knows, what she eats and drinks is always new and always good.

Some of you may be thinking, “How sad that she no longer recognizes the names of her favorite things.” You would be right. It is sad. It can be especially painful for me as her husband. How I wish I could spare her from these things as well as those that are to follow. My only way of adapting is to recognize that it is totally out of my control. All I can do is try to keep her safe and happy. I pour all of my energy into that. I’ve learned to live in her world and to be joyful that she can still enjoy life. I am also aided by the fact that she is so dependent on me. She is like a young child, she can do very little on her own. She needs help with everything, and I am willing and able to give it.

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Does Kate Still “Know” Me?

It’s been almost two years since Kate first asked my name. I mentioned it to a friend in Rotary who has been very active in our club’s support of a project to raise funds for Alzheimer’s research (CART, Coins for Alzheimer’s Research and Treatment). A week later he made an announcement encouraging club members to contribute and mentioned what I had said. He conveyed how devastating that must have been for me.

While I would not have used that word, it was a moment that took me aback even though I knew that it would come eventually. I also knew that this was just forgetting my name in one moment and that at other times she would recall. I took it as a sign that the day might be coming when she would completely forget who I am and wondered how long that would be. At this point, I still don’t know. That’s good news because it means she continues to remember off and on both my name and that I am her husband. In fact, in the past few months, she has called me by name more than she did a year ago.

There is even more good news. Although it is common for her not to remember my name and relationship, she almost always recognizes me as someone who is familiar and with whom she feels comfortable. She trusts me. Two incidents occurred yesterday that are good illustrations.

At 8:30 yesterday morning, twelve minutes into my walk, Kate sat up in bed. I went to her. She was ready to get up. Although she expressed her general unfamiliarity with the location of the bathroom and what to do when there, she did not appear to be disturbed at all. I took her hand and walked her to the bathroom.

For months, she has asked what to do when I show her the toilet. Recently, I started telling her to pull her underwear down and sit on the toilet, and everything would come naturally. Once seated she understands I was right and sometimes, as she did yesterday, seems amazed that “the water just comes out.”

After using the toilet, she asked, “What next?” I told her it would be a good time for a shower. She didn’t hesitate and just asked where and what to do. I turned on the shower and led her inside. She was very comfortable with me and preferred that I take the lead in bathing. The was the first time she just stood there and turned around when I asked so that I could reach all around her.

As we walked out of the shower, I said something I don’t often say, “Do you know who I am?” She said, “No, who are you?” I gave her my name, and we continued to the bedroom where I helped her dress. Then she lay down to rest. I believe that during the time from getting up until that moment she didn’t know my name or our relationship, but she obviously trusted me. Of course, that could have been because I was the only one available. I believe, however, that her comfort level expressed the nature of our relationship and that she would not have responded the same way with a stranger.

The second illustration occurred late yesterday afternoon and early evening. Following her afternoon rest, she sat up and said she was ready to eat. I told her it was a little early for dinner and suggested she have a snack to tide her over until then. We went into the kitchen where I gave her a banana. She didn’t remember what a banana is but was delighted when she took the first bite.

It was clear that she also didn’t remember we were in our house, so I decided to give her a tour of the dining and living rooms. We must have spent ten minutes in the dining room. I am embellishing my commentary even more now. I pointed to the chandelier (never remembers what a chandelier is) and explained that was from her parents’ home. I said, “Can you picture your mother and daddy looking at different fixtures and finally deciding this was the one they believed was best for their new home then under construction. Her mother was quite a cook and loved to entertain. I reminded Kate of all the celebratory occasions and specific family members that would have eaten under the light of that chandelier. She loved the tour, but all the family items I showed her never made her recognize she was in her own home.

When we entered the living room, she was tired of standing and asked if she could sit down. We sat on the sofa that had been in her parents’ living room. I reminded her of the times we had sat on that sofa and sneaked a kiss or two after her mother and daddy had gone to bed. I didn’t yesterday but sometimes I also remind her of the doorbell that her parents had installed for her grandmother who stayed with them in the winter. Her mother rang the doorbell as a signal when it was time for me to leave.

Kate was tired and asked if she could rest on the sofa. I told her that would be fine and that I would get my laptop and sit with her. She rested about forty-five minutes before asking when we were going to eat. I told her we could order takeout from Chalupas right then.

As she got up, she asked me where I live. I said, “Right here with you. This is our house.” She looked at me skeptically. I didn’t say anything more. Her conversation in the car going to and returning from the restaurant made it very clear that she didn’t know my name or our relationship. I responded to one of her comments by saying, “I hope you feel you can trust me.” She said, “I do. You’re a nice guy.” I said, “I’m glad to hear that because I like being with you.” She said, “I like being with you.”

We ate our meal and then went to the bedroom where she started to work on puzzles but became frustrated with the first one. I gave her a couple of photo books to look at while I watched some of the evening news. She wasn’t interested. I asked if she would like to get ready for bed. She was. She was very cooperative in taking her medicine and putting on her night clothes. She went to sleep but woke at least for a minute or two when I got in bed an hour and a half later. She responded to me warmly just as though she knew I was her husband. Did she? I don’t know. I do know that she tapped me on the arm early this morning. I looked at my watch. It was 4:44. She said, “I love you.” I said, “I love you too.”

Does it really matter whether she knows my name or that I am her husband? She knows “me.”

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Not Everything Has Changed for Us

NOTE: The following post was uploaded shortly before all restaurants in our area were closed. We will be eating at home with takeout from a few restaurants and meals prepared at home for the others.

As I write this post, the world is trying to adapt to significant changes related to the Coronavirus. WHO has declared a pandemic. Colleges and universities are extending spring break or cancelling classes for the balance of the semester. The NBA suspended its season. March Madness is off. Disneyland and Disney World are closed. And millions of people in the US and around the globe are making their own personal adjustments to the threat of Covid-19.

Kate and I are making our own changes. That is not new for us. We’ve been doing that for the past nine years since Alzheimer’s entered our lives. The fact that we eat out for both lunch and dinner every day is of special concern, however, and I am looking at that very carefully.

Getting food is not the problem. It’s the fact that we eat out for all our lunches and dinners. Of course, I can prepare meals at home or have them delivered, but that requires a life change that has been critical in our minimizing the impact of Alzheimer’s. It has helped to keep us from feeling socially isolated. It’s a change I don’t want to make, but we have made many changes already and have adapted well. I believe we will do the same this time.

That prompted me to think about some of the previous changes we’ve made. Kate gave up her position as our church librarian even before the diagnosis. She knew she wasn’t handling the job (even as a volunteer) the way she felt she should. I began a phased-in retirement to take care of her. Kate replaced her responsibilities with the library by working in the yard and working on a family photo book on her computer. Early on, I became the sole driver when Kate had an accident that totaled her car. I took over management of the household. I cut back on my volunteer activities at church and in the community. We discontinued international travel. We stopped making our annual trips to Chautauqua. We gave up all evening events except our music nights at Casa Bella that begin at 6:00 and end between 8:15 and 8:30. Kate had pruned the shrubbery so severely that many died and others didn’t have anything left to prune. She lost the ability to use the computer. That left her with the iPad that she has used so much until recently. Now she is having great difficulty working her jigsaw puzzles. We stopped making trips to see our children and grandchildren. Movies used to be an important source of entertainment. We saw only two last year, and Kate only enjoyed one of them.

Eating out has helped us maintain our quality of life. I am not yet planning to stop, but I do want to be prudent. Friday afternoon I made an unusual trip to the grocery story. Typically, I go once a week to buy eggs, V8, and bananas for my breakfast as well as a few other incidentals. Friday’s trip was for some frozen items as well as assorted foods that I can prepare at home. I didn’t buy a lot. I just wanted to make sure we have enough food for several days. During that time, I will reassess the situation and make further plans. I believe the probability of receiving or passing the virus is greater at some restaurants than others. We ate lunch at Applebee’s on Friday. No one was there when we arrived. Only three tables were occupied when we left. Bluefish Grill has very few customers for Saturday lunch, and they are spread out. That was true this past Saturday. Our Sunday lunch place seats almost 200. I counted thirty while we were there yesterday. Unfortunately, our regular music nights at Casa Bella appear to be the biggest threat. The crowd numbers about sixty in close proximity. The same is true for our regular pizza place.

We ate at home the past two nights. Saturday, I cooked boneless, skinless chicken thighs in a tomato sauce with Italian seasoning. Kate is not a vegetable eater, so I served fresh fruit salad with blueberries, bananas and apples. Last night, I added bouillon to the leftover thighs and sauce and made a soup. We had a very pleasant time both nights. In a way, sitting down at our own table was almost like a treat.

Looking ahead, I see a downside that I will have to address. Cooking adds a new element of stress. I have only so much time for all my activities, most of which involve caring for Kate. I skipped the Y on Friday to grocery shop. The preparation of a meal as well as the clean-up afterwards takes time I could do other things. This is a little thing, but I am reminded of why I was initially motivated me to eat out in the first place. It was only later that I came to realize its social benefits. I believe one reason I have been able to manage stress as well as I have is that I have worked to minimize the things I have to do on a daily basis. Cooking our meals is not something to which I look forward. I am going to assume this will be temporary, and plan for to eat out less. We have adapted before. We will continue to do what we need to.

As I think about all our changes, I have to say that one very important thing hasn’t changed – our relationship. What I mean is the feelings that Kate and I have for each other have remained strong. I would say even stronger than before Alzheimer’s. Each of us places more value on the other and recognizes it.

Kate may not always remember my name or that I am her husband, but she continues to feel comfortable with me. She is especially insecure now and looks to me for help with everything. Interestingly, she has called me by name more often in the past few weeks or months than she has for a year or two. I think that is a case of “reflexive memory.” She calls my name most when she needs something, and that occurs more frequently now. The name just pops out. At other times she asks my name. It often happens while riding in the car, eating a meal, or when she wakes up in the morning. In moments like those, my name and relationship have slipped away. I imagine she is thinking, “I know this guy, but who in the world is he?”

She continues to be very appreciative. Two nights ago, as she was getting in bed, she thanked me for taking care of her. For a moment she was emotional and started to cry. She said, “You have such a load on you.”

She also likes to be with me. We share many tender moments in which we express our love for each other even when it doesn’t involve words at all. Sometimes we just sit side-by-side with my arm around her listening to music. Other times, we just hold hands. We don’t always need to express our love in words. I didn’t imagine it would be like this at the time of her diagnosis. That’s just one more reason I say we are fortunate. I am grateful.