Happy Moments and Challenges

I often fear that when I post stories of the more challenging (troublesome? Disturbing?) experiences Kate and I have, you may feel our lives have become gloomy. Similarly, when I post our good ones, I fear that I am failing to convey the trials we face. The truth is that both the good and bad are happening, sometimes in very close proximity. I want you to know about both. Beyond that, I want you to know that our Happy Moments continue to outweigh the more difficult ones.

This morning (See below.) we have had contrasting experiences, and it’s only 9:55. It began when I woke up a couple of minutes past 6:00. As I started to get out of bed, Kate said something to me. She seemed wide awake . . .

The paragraphs above were written about 9:45 Wednesday morning. It is now 2:58 Wednesday afternoon. Since then I have been occupied with Kate, some household chores, and checking email. In a way, the break was fortuitous in helping to make my point about the mixture of experiences we have during the day.

Let me pick up where I left off. She seemed wide awake when I started to get out of bed. More importantly, she seemed perfectly at ease although she did ask me what she should do. I said that it was a couple of minutes past 6:00, and she should probably go back to sleep for a while. That satisfied her, and I went to the bathroom.

Moments later I heard her say, “Hey.” I opened the bathroom door and saw her standing there. She needed to use the bathroom. As is often the case, she was very dependent on me. Since she was up so early and cooperative, I suggested it would be a good time for a shower. She didn’t object.

When we got out, I started to dress her. She wanted to rest before we could finish. That seemed like a good thing as I hadn’t done anything to get myself ready for the day. I left her in the bed while I went to the bathroom, dressed, and fixed breakfast.

I had just put my breakfast on the table when I heard her call. I took my plate of scrambled eggs with me to see what she wanted. She was ready to get up. She was in a good humor, and I had no trouble getting her ready. While helping her, I ate my eggs and gave her a bite. She loved it.  I was glad because that gives me another breakfast alternative for her.

She was in an unusually cheerful mood when we left the bedroom for breakfast. She was excited about the flowers and trees in the back yard. At breakfast, she was very talkative. Everything pleased her. The sun was shining brightly, and she loved looking out the kitchen window at all the “green” in our neighbor’s yard. She raved over the apple juice, blueberries and strawberries, and her eggs. We were off to a great start. I had already thought about writing a more upbeat post, and she was providing all the material I needed.

After breakfast, we went to the family room where I picked up The Velveteen Rabbit, and we sat down to read it. She has never enjoyed it more, but she did look tired when we finished. I asked if she would like to rest. She said she would. That’s when I got my laptop and sat in a chair across from her to write this post.

She didn’t rest long. She began speaking to someone who had apparently appeared in a dream. When she started to get up, I walked over to her. She greeted me warmly as though I were a guest and not her husband. I asked what she wanted to do, and she said she was going “over there” and pointed to the back yard. It is most unusual for her to go out to the patio and back yard. I was pleased.

We spent about fifteen minutes walking around to see all the plants that she admires from inside the house. She was excited to see everything up close. It was another high point of the day.

It was time for lunch when we came back inside. I called in a takeout order from a place nearby. Everything went well until near the time we finished eating. She seemed a little disgruntled and wanted to go home. I was hesitant to do that since the sitter arrived only a few minutes before. I told her we were at home but quickly recognized that wasn’t going to work. I told the sitter I was going to take her home. She remained at the house while we took a 20-minute drive.

Until then, our drives “home” had worked well. That wasn’t so  that day. Before leaving the house and in the car, Kate asked several times if I knew where she lived. Each time, I assured her I did. She seemed quite suspicious. Then as we came within a block of the street where I was to turn for our house, she said, “This doesn’t look right.” She repeated this after I made the turn. When she saw the house, she didn’t believe it was her house. She was hesitant to go in and insisted on my going in first. It seemed to me that she recognized the house as familiar but knew it was not “her” house. Since this was the first time she did not accept “our” house as “her” home, I wonder what will happen next time I try the same thing. (I got to find out yesterday afternoon. It went well.)

When she saw Mary, she didn’t recognize her at all; however, she gave her a warm welcome. I started to go to the kitchen, but she wanted me to stay with her. I sat beside her on the sofa and picked up The Velveteen Rabbit again. She shrugged but listened. She didn’t respond at all the way she usually does and had earlier that morning; nevertheless, I could tell she was following the story. She got tired before I finished and put her head down on the pillow. I finished the book while she rested. I went to the grocery store and back. I was at home the rest of the time the sitter was here.

After Mary left, I decided we needed a boost for the day. I took Kate to Casa Bella for dinner. We had a nice meal and returned home for the night. All was well. It wasn’t our best day, but it had some very good moments. I felt good.

Emotional Times

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

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

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

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

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

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

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

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

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

Feeling Insecure, Dependent, and Appreciative

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

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

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

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

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

The Ups and Downs of our Present Life

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

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

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

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

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

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

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

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

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

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

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.

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.

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.

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.

Very Talkative at Latest Doctor’s Visit

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

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

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

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

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

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

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

A 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.