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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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Our Days Are Always Eventful

Kate was up early once again on Friday. This time it was right after I had dressed and was about to get breakfast. She seemed less disoriented than usual. I got her ready with no problem, and we went to the kitchen where we had breakfast together. When we finished, she wanted to “go home.” I took her for a 20-minute drive.

When we returned home, we sat down on the sofa to look at a photo book. We didn’t even open the cover before she wanted to rest. I went to the desk in the kitchen. It wasn’t long before I heard her say something. She was getting up and wanted to go home. We took another ride and were back home before 10:00. She was ready to rest.

I was preparing for a Zoom meeting at 2:00 and was testing my setup in the guest room when I heard her say, “Hello.” When I got to the family room, she was walking in from the kitchen. She was greatly relieved to see me. She also seemed disturbed by something. I tried to comfort her for a few minutes before she told she told me she had done something she regretted. She said it wasn’t a big thing and that other people might think nothing of it, but to her it mattered.

I asked if she could tell me about it. We sat down. She wanted to tell me but said she didn’t know how. As often happens, she wasn’t able to give me a consistent explanation of the problem. I did learn that it was something that had occurred in the past and that it involved the two of us. Once or twice she said she couldn’t even remember what it was. Later on, I asked her if she remembered what she had done, and she said she could. She just didn’t know how to tell me. I assured her that it would not be a problem for me. She said she knew that, and that made it even harder to tell me.

It seemed like a good time to try to divert her attention. Even though it was a little early, I suggested we order a meal and bring it home for lunch. She agreed, and we got in the car again. She was troubled all the way to the restaurant but apparently forgot everything on the way home. She didn’t said another word. I wonder what she thought she had done.

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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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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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Change in the Air

Since the coronavirus came on the scene, change has become a regular part of everyone’s life. As my recent posts have suggested, Kate is no exception. I have a much harder time anticipating what a day will be like. That’s not because the good times have passed. They haven’t. They still represent a much larger percentage of our experiences than the trying, or even challenging, moments, but she definitely keeps me on my toes. Monday represents a good illustration.

The day began early, about 2:00 a.m. to be exact. It lasted off and on for the better part of two hours. I can’t recall the precise conversation. She was concerned about either a responsibility she thought she hadn’t fulfilled or what was on our agenda for the day. She asked me a few questions that I answered only to be followed a short time later with the same questions and my same answers.

Because she lost some sleep, I assumed she would get up a little later. That turned out to be a wrong assumption. About 7:30, I heard her say something just as I was going to take my morning walk. I went to the bedroom and found that she was confused but not seriously disturbed. She just wanted help understanding where she was and what she was supposed to do.

I asked if she was ready to get up. She said she didn’t know. I suggested that I take her to the bathroom. She agreed and on the way said, “Where’s my husband?” At the time, it was not a surprise, but her failure to recognize me was repeated throughout the day. It was the second time that has happened in the past week or so.

After she was dressed, I gave her a bowl of strawberries and blueberries and a glass of apple juice. For the first time, she showed little interest in either the fruit or her juice. She left half of the fruit and didn’t want any cheese toast when I offered it. She was quite talkative, however. Like other recent conversations, she didn’t realize that she was talking to me and kept saying she wished “my husband” were here to explain more of the things she talked about. We talked for an hour at the kitchen table before I assumed we would adjourn to the family room where she would rest. Wrong again.

Instead, she noticed a letter from Blue Cross on my desk. It was a communication about a medication I take for a dry eye condition. She picked it up and made an effort to read it. When we walked into the family room, she took it with her and then went into the living room. She took a seat and started reading it. I remained in the family room. I knew she wouldn’t be able to understand it but was fascinated to see how long she would try and made periodic visits to see if she was napping or reading. Each time she was trying to read with the same degree of seriousness she had shown a few days earlier when she tried to read The Velveteen Rabbit.

She came back to the family room in about twenty minutes and took a seat beside me. She started to read the letter when I noticed that she had it upside down. I asked if she wanted me to read it. She did. First, I explained what it was and that it included the company’s non-discrimination policy in nine languages besides English. I felt exactly the way I had the other day. I was glad to see her try to read but sad because she faced such an impossible task.

My Rotary club started its meetings again, and I re-established our arrangements to have a Monday sitter. She is someone who had been with us almost a year but not since September 2018, so I asked that she come an hour early to give Kate an opportunity to develop a comfort level with her before I left.

That went well, but when it was time for me to leave, Kate wasn’t comfortable about my going. She wanted to go with me. I told her the sitter be with her and that I would be back after my meeting. She wasn’t happy but accepted without a protest. I gave her a couple of her photo books to look over while I was gone.

When I returned, she was resting, but awake. I brought in groceries I had picked up on the way home from Rotary and then checked email. I heard her talking with the sitter and walked into the room. She was glad to see me. I told the sitter she could go. Then Kate and I spent time with one of her photo books.

During dinner, she said she was tired and wanted to go to bed early. She said the same thing after dinner. When we walked into our bedroom, she wanted to lie down. I suggested that she brush her teeth, put on her night clothes, and call it a day. She agreed, and I got her to bed. I watched the evening news and then put on some music for her while I took a shower.

After my shower, she began a long conversation. She was in bed when it began, but she soon took a seat on my side of the bed across from the chair in which I was sitting. I couldn’t fully understand what she was talking about, but I surmised that she thought I was a student with a part time job at whatever place she thought we were in, perhaps a hotel. I also gathered that she was trying to help me get a regular job. She asked if I knew her husband. I told her I did. She said he would be able to help by directing me to people who might be hiring. She said he was at work but would be coming home soon and repeated this a number of times. Realizing that he might not come home before I left, she asked if I had her husband’s phone number. I told her I did. Then she said, “If you run into a problem, call Richard.”

She was very eager to help me and kept repeating the whole scenario multiple times over an hour. For at least the last thirty minutes, I made an effort to close the conversation so that I could get to bed, but she continued. When she was nearly finished, she tested me to see if I remembered what she had told me to do. She said, “Now, what do you do if you run into a problem?” I told her I would call Richard. I don’t remember the other question, but I do remember the answer was to contact her. I was glad to have passed. She continued to talk and tested me one more time before the conversation ended for good.

We had what I thought was a rather amusing conclusion. I suggested we get to bed, and she asked where she was going to sleep. I pointed to her side of the bed. She was surprised. It turned out that she thought she would be going “home.” I told her she would be staying the night. She asked where I was going to sleep. I pointed to my side of the bed. She seemed a little hesitant but got in. I turned out the light and got in bed beside her. She was comfortable being with me, but she didn’t respond to me like I was her husband.

It is obvious that Kate is changing in a variety of ways. Her sleep pattern is unpredictable. She has more delusions. She has very talkative spells. As usual, the only way I can make sense out of it is to remind myself that her Alzheimer’s is a result of the plaque and tangles in her brain. They continue to grow and cause the circuits in her brain to malfunction. Regardless of the explanation, Kate is clearly changing, but I am glad to say that she is almost always kind and gentle. Just yesterday, she suddenly snapped at me because of something I said. She immediately apologized and said, “I really don’t like to be that way.” No wonder I want to give her the best care I can.

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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 Day of Surprises

Yesterday was a very good day for Kate, but I wasn’t sure when she woke up. About 8:30, I heard her say, “Hello.” <pause> “Hello.” Her voice was rather calm. When I reached her, she looked wide awake. I was about to give her a very lighthearted greeting when I noticed that she looked very concerned. I shifted gears to mirror her feelings. She told me she was glad to see me. I asked what I could do to help her.

That initiated a conversation that was a good thirty minutes long. She wanted to know if “they got it.” I never learned nor did she ever hint at what that was, but I told her “they did.” In most situations like this, that would be enough. This time she wanted to know how I knew “they got it.” One fib leads to another, and I told her I was there when they took it. Then she wanted to know who took it. I gave her the name of a friend of her mother’s. She didn’t remember the friend, and I had to give a little explanation.

That ended her questions momentarily. She said she was very relieved. She had forgotten to get someone to take it. I assured her it was taken care of and that she could relax. That didn’t end her concern. Several times, she asked me if I was sure it had been taken and who had taken it. When she was fully convinced that everything was all right, I took her to the bathroom to get ready for the day.

Although it was a very good day, much of the time she did not recognize me as her husband. The first sign of that came as we walked to the bathroom. She asked my name. I told her, and she expressed her appreciation to me for helping her. She went on to say that she liked me. Later, she asked my name again and then asked how she should address me. “Mr. Richard?”

It was still too early for lunch when she was dressed, so I prepared breakfast for her again. She was talkative, and we had a very pleasant time together. Afterward, I was prepared to sit down with her and look at a photo book or read something to her. I took her to the family room and then returned to the kitchen to get my coffee. She took that moment to pick up the Velveteen Rabbit. I assumed that I would read it to her; however, when I asked, she said she just wanted to look through it herself.

I had mixed emotions about her reaction. It was the first time she had ever declined my offer, and she never spends much time trying to read. I actually enjoy reading to her, but I also had other things to do. I decided it was good to let her read on her own and brought my laptop into the room to work on a slide show of photos I have created for our 57th wedding anniversary tomorrow.

I took a seat across from her and was prepared to stop at any moment to read to her. The big surprise was that she spent well over an hour with the book. Then she picked up a family photo book and began to read the text accompanying the photos. With both books, she meticulously moved her fingers from one word to the next. I felt two emotions, sadness that she had to work so hard and joy that she seemed to be deriving pleasure on her own. Several times I repeated my offer to help. She never accepted, but she did convey that she didn’t feel like she understood what she was reading.

She continued until Panera delivered our lunch. It arrived thirty minutes before the sitter was to come. I told her lunch was ready, but she wanted me to come to her. She was looking at the flowers and photos in the room as well as the back yard and the forest of trees on our neighbor’s property behind our house. This is not unusual, but she took far more time to look and express her feelings about the beauty she saw. As always, I took pleasure in seeing her so enthusiastic. I reminded her several times that I had her lunch on the table, but she didn’t get to the table until the sitter arrived.

We took another thirty minutes to eat our lunch when I took her to the family room. I felt like it would be too abrupt to rush away immediately. Sometimes I sit down with her to look at one of her photo books. She gets tired quickly and wants to rest. That is what I expected again. I handed her one of the books, and she immediately started going through it on her own. When I told her I needed to run a few errands and would return, she looked sad but didn’t protest or ask to go with me.

The next surprise came when I returned almost an hour later. She was seated in the same place looking at the same book. She looked content, so I didn’t even go into the family room. I made a couple of phone calls and worked on the computer.

At 4:00, I heard her ask Mary where I was and when I would be back. Mary told her I was home and working in the kitchen. In a couple of minutes, she walked into the kitchen. She was glad to see me and said that she was ready to go. I told her there were a few things I wanted to finish before then and to give me a few minutes. Less than five minutes later, she returned with a copy of The Giving Tree, Winnie the Pooh, and her iPad. She wanted to know if I was ready. I told her I was. It was almost 4:15, but I went to the family room and told Mary that she could go. Then Kate and I went to the car along with the things she had been carrying.

I had ordered dinner from a caterer earlier in the week and was scheduled to pick it up at 5:00. It’s about fifteen minutes from our house. That gave me more than enough time, so I drove around until going to her place for our dinner.

As soon as we entered the house, she responded as though it was the first time here. We walked into the kitchen where I started to get the food on the table. She commented that this was the first time she had been here and admired everything she saw.

The next surprise came after dinner. We were walking to the back of the house when she said, “I just want to thank you and your people for everything you have done.” She continued to express her appreciation for several minutes . What I surmised was that she thought she was in some type of lodging, and I was the proprietor with a staff to take care of the guests.

As I helped her get ready for bed, she came back to this topic. She thanked me again and talked a little longer. This was another surprise. She often talks about her working with a program of some type that helps people with education, job skills, and/or financial aid. This time she thought I was directing such a program in which I operated a place for guests to stay and employed people to help them financially and with job skills.

The last surprise came after I got in bed two hours after she did. She hadn’t been asleep at all. That surprised me because she had talked about going to be early when we were driving around before dinner, at dinner, and afterwards. Not only that, but she had gotten up somewhat early and not rested at all during the entire day. After I got in bed, she said, “What do we do now?” I told her it would be a good time to relax and go to sleep. She said, “Good.”

She is still sleeping at 10:15. That’s no surprise. I wonder what is in store today.

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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.

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Childlike and Tired

On Monday Kate and I had very little contact until 4:30. I got her up at almost 11:30. She was more than a bit confused but didn’t express the kind of fear she sometimes does. Recently, she has been unsteady after sitting up on the side of the bed or the sofa. The day before, she had fallen back on the bed before attempting to stand up. This time I asked her to sit for a moment. I put my hand on her back to support her. Then I helped her up. She got along all right but was very insecure as we walked to the bathroom.

She experienced one of a number of childlike behaviors when we went to the car before getting a takeout lunch from Panera. She noticed a Dr. Pepper baseball cap that she had long ago hung on the knob of a cabinet door in the garage. Periodically, she takes interest in it. This time she was just like a little child discovering something new and exciting. She thought it was a nice decorative touch (my words, not hers) and said she might hang a number of them around the garage.

After lunch, she was ready to rest. That worked out well because I had a Zoom meeting at 2:00, and she fell asleep on the sofa. She must have been quite tired because she didn’t take off her shoes nor lift her feet to the sofa. She just fell over on a pillow from a sitting position and slept until at least 4:30 when I noticed she had opened her eyes. I got up from my chair and walked over to her and asked if she was about ready to get up. She told me not to talk, that she wanted to talk with me later. She looked like she was bothered by something. I said, “I love you.” She said, “That may be the right thing to say but not right now.” I started to ask her to explain, but she cut me off. I took her hand and told her I would be seated across from her if she needed me. When I started to release my hand, she gripped it tightly. I sat down on the corner of the table in front of the sofa. It wasn’t long before it felt too uncomfortable. I started to gently pull my hand away, and she held it tighter. In five or ten minutes, she was asleep. I took a seat close to the sofa and waited another fifteen minutes before waking her for dinner.

Whatever was bothering her faded from her memory like so many other things. It’s another good example of the pattern of her delusions. She may be resting, but her brain is active and doesn’t function the way it did before Alzheimer’s took over. As I have said before, she had experiences like this before sheltering. I believe, however, that the reduction in her activity has exacerbated the problem. I should add that it is not boredom alone that leads her to rest. She is really tired.

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A Change in In-Home Care

Until sheltering came into our lives, we have had the same schedule for in-home care for the past two and a half years. One sitter comes at noon every Monday and stays until 4:00. That allows me to make my regular Rotary meeting, go to the Y, run errands and attend occasional meetings for the balance of the time. Another sitter comes on Wednesday and Friday between 1:00 and 5:00.

I have always preferred the 1:00 time for both sitters, but that wouldn’t allow me to make Rotary. Our club suspended its meetings in April, and I took advantage of the change to request that the Monday sitter come at 1:00 until the resumption of our Rotary meetings. I thought that had worked fine, but last week the Monday sitter showed up at noon just as Kate and I were getting ready to leave to pick up a takeout meal from Panera. It turned out that she had thought that we had made the change only for the month of April.

In our conversation, I discovered that she has other commitments after 4:00 and had only been staying until 5:00 to help me out for a short time. As it turned out, I haven’t felt the need for her during this time. I continued the service for two reasons. First, she has been with us over a year, and I didn’t want to risk losing her if I temporarily discontinued the service. Second, I didn’t want her to sacrifice the income in case she couldn’t find something else until we started again. When I finally understood the situation, I told the agency not to send anyone on Monday until Rotary begins its regular meeting schedule.

So, for the month of May, I only have a sitter two days a week. Ironically, I feel good about this arrangement. While sheltering, I have only run sporadic trips to the grocery or pharmacy and taken a short walk around the neighborhood. I’ve spent the bulk of the time at home. As a result, I haven’t worried about getting Kate up as early as I had been. Quite a few times, we have been eating our lunch when the sitter arrived. She would take a seat in the family room until we finished eating. After that, Kate usually rests for the balance of the afternoon, and I have worked on other things and made phone calls without any interruptions. I think Kate has been comfortable with the arrangement as well. This means there is never any abrupt time when I am leaving for an extended period of time. I generally say something like, “I’m going to run to the grocery and will be right back.” That is something she has been able to accept without any problem. Thus, I have felt more relaxed during our sheltering.

The question now is what is going to happen when Rotary begins. As it stands, the agency will return the same sitter when I tell her it’s time to change back to the noon to 4:00 schedule. That assumes that the sitter has not been assigned to someone else. I am wondering about the possibility of changing sitters even if the same one is available. I have never felt as comfortable with her as I do with the other sitter. On the other hand, Kate doesn’t require a lot of attention. She rests most, and sometimes all, of the time the sitters are here. Like most changes of this nature, I can’t be sure that the replacement would be better, perhaps not as good. Of course, I could try another one or several, but that would mean introducing Kate to more than one new person. I am leaning toward accepting the same sitter if she is still available, but I have almost two weeks before I have to make a final decision. We’ll see what happens.