An Experience I Couldn’t Handle

This morning I ran into a problem with Kate that had me stymied. She had just sat up after a short rest. I sat down beside her with the intent of looking at one of her photo books. It turned out that she believed she had to be someplace about that time. She said she was supposed to meet a group of women at her house. I didn’t think much of it because I am usually able to distract her so that she forgets whatever she has imagined.

This time was different. She thought she was running late and had promised “people” she would be there. Knowing that she didn’t have any obligations, I told her I didn’t think her meeting was today but tomorrow. If she accepted that, I was confident the whole issue would have been forgotten; however, she was sure that she was right. It was about time for lunch, so I suggested we order a takeout lunch and then I would take her to her house. She was fine with that and off we went.

On the way, she forgot that we were going to pick up our lunch. She became increasingly worried about being late. I assured her we would go directly to her home after getting our lunch. When we arrived, she didn’t recognize our house as hers. I mentioned that she might be thinking of her house in Fort Worth. She was adamant that I was wrong. I said, “I do remember that you have a meeting tomorrow, but I didn’t know about the one today.” She remained sure that it was today.

I told her we had lived in the present house for twenty-three years but that we had lived in two other houses in Knoxville before that and suggested she might be thinking of one of those. I added that other people were living in both of those.

She was almost in tears as we ate our lunch. She told me that she didn’t know what to do. I told her I wanted to help her but was in the same boat. I didn’t know what to do. Then she surprised me by saying, “It’s not your fault. You are trying to help me.”

Again, she asked if I would take her home. It was only thirty minutes before the sitter was to come, and I hesitated leaving but told her I would take her. I drove her by each of our previous homes. Fortunately, one was just around the corner and the other only two miles away. She didn’t recognize either one as her home.

She began to calm down as we drove. By the time we returned home, she was fine. The sitter arrived shortly thereafter. When we saw her, I said, “Look who’s here. It’s Mary.” Kate beamed and greeted her. They began chatting, and I got my things together and went to my office. She had suffered for almost two hours, but the crisis was over. I think the only thing I did that was helpful was to convey my desire to help her. None of my specific efforts to solve her problem was successful.

Azheimer’s Has Been Testing Me For The Past Two Days: Part 2

The next morning (Friday), I woke up just before 4:00 and was awake for 30-45 minutes. I made up for it by sleeping until 6:25. As I started to get up, Kate spoke to me. She was wide awake and ready to get up. I asked if I could go ahead and get to the bathroom and dressed before she got up. That was fine with her. I thought she might have gone back to sleep by the time I finished, but she still wanted to get up.

Everything went smoothly, and we were in the kitchen about 7:15. That is really early for her. I fixed breakfast for both of us. She was cheerful and loved her apple juice, blueberries, and cheese toast. It was one of those times she mentioned repeatedly how good everything was. I shared some of my scrambled eggs. She also liked them. She was talkative and didn’t know who I was, but we had a good time.

When we were through, I told her I wanted to show her something. We went to the family room where I picked up a photo book of her father’s family. We’ve looked at it a lot over the years but don’t usually get through the entire book before she wants to rest. That morning was a notable exception. She took far more interest in it than she has before, and we finished the whole album.

By this time, she was tired and wanted to rest. That’s when I got my laptop and sat in a chair across from her. We had enjoyed such a good time together that I was eager to write this post. She didn’t rest long and didn’t sleep at all before gathering three different photo books in her arms and got up from the sofa as though she were going someplace. Then her attention focused on the flowers and plants outside and inside.

Moments later we took a seat and began one of those long conversations in which she is the primary speaker. I can’t begin to summarize what she said. Much of it I didn’t understand. She talked about a child or children she was serving as a mentor. At least, that would be my interpretation. She was enthusiastic about the children and the work she was doing. I was happy to be a facilitator. As I suggested in my previous post, I was eager to write about having such a special experience, but I also hated to stop her. The conversation lasted almost forty-five minutes before I brought up the subject of lunch.

We got a takeout meal, and the good times continued until we finished our meal. I stepped away from the table to pay someone for work he had just completed on our swimming pool. When I got back to the table, the look on Kate’s face had changed dramatically. I mentioned it and asked what was troubling her. She was quiet and didn’t know what to say. Over the next ten minutes or so, she didn’t talk much. She was troubled by something, but her expression didn’t suggest the usual issues. She didn’t look like she was experiencing anxiety as she does in some moments when she doesn’t know “anything.” Neither did she look afraid. She tried several times to say something. Each time she had trouble getting it out.

We were silent a few minutes before she asked if she could tell me something. I was eager to hear and quickly agreed. She began by talking about a boy and a girl. I had a hard time making any sense of it but listened without saying anything. Several times, she said she didn’t want to hurt me. I just let her talk. As she continued, it became clear that a baby was involved in some way. I began to sense that the girl and boy had had a baby out of wedlock. From her first mention that what bothered her most was hurting me, I thought she might have had a delusion about having had an affair; however, that seemed too far-fetched. Gradually, I began to realize that the girl she was talking about was her and asked.

That began an additional conversation in which I tried to reassure her that I would forgive her and that we could continue our relationship as though it had never happened. The sitter arrived at that point. I told her we would join her shortly. We talked an additional 25 minutes before I walked Kate to the family room. We spoke with Mary a few minutes. Then I told Kate I had a few things I wanted to take care of in the kitchen (my office) and assured her I would be at home and Mary would be in the room with her.

Everything was all right for two hours before Kate walked into the kitchen looking for me. She was disturbed again. This time she wanted to talk with her mother. Like the issues I confronted the day before, I felt on the spot to say the “right” thing without knowing for sure what that was. This time I told her that her mother had died. I almost always avoid telling her because it sometimes bothers her though only momentarily. Normally, she accepts it without a problem.

It was different this time. She wasn’t hurt at all, but she adamantly refused to accept what I had said and continued to ask to call her. I reminded her that she had cared for her mother the last 5 ½ years of her life here in our house. She never believed what I said and asked to speak to her father. I reminded her that he had died 30 years ago. That didn’t fly any better than telling her about her mother.

At least, Kate decided to go in a different direction. She said she could call her parents’ church, and they would know. I told her we might have trouble reaching someone who might know about her parents. Strangely, she accepted that although she repeated her desire to call the church several other times over the next 30-45 minutes.

I brought up her brother and said we could call him. That pleased her, but I placed calls to Michigan where he and his wife are spending the summer and was unable to reach him. Then she talked about friends who might be able to help. I thought of a woman with whom she had worked when she was the church librarian. I was unable to reach her as well.

A couple of years ago, I started a 3-ring binder with information about Kate and her family. I remembered that it contained a copy of her father’s obituary. The binder was sitting on the table in front of us. I opened it and read the obituary. Kate finally accepted that her father had died. Then I went to my computer and pulled up her mother’s obituary and read it. She accepted that as well, but that led to an additional problem.

She was quiet for a moment before saying, “I have to go to Fort Worth.” That is where she was born and lived until two years after we married. She asked if I would take her. At first, I tried to discourage her, but that was a mistake. I switched gears and agreed to take her.

We got up from the sofa and went to the car for one of our regular drives “home.” I drove for 30 minutes before stopping to order a takeout pizza from a place near our house. During the drive, she calmed down and forgot all about going home or wanting to call her parents. We picked up the pizza brought it home, and the rest of the evening went well. The day’s crises were things of the past.

Alzheimer’s Has Been Testing Me For The Past Two Days: Part 1

Preface

I wrote most of this post yesterday (Saturday). That was 24 hours after I started. My intention was to write a brief summary of a special time Kate and I had Friday morning. I dropped those plans when other things took precedence. Although the morning had gone very well, the day turned out to be most unusual and very challenging. Even more unusual, was that it marked two days in a row that Kate faced problems that were especially difficult for me to address. A lot has happened. I won’t do justice to what occurred, but here’s the story in two parts, starting with Thursday.

Kate got up early on Wednesday and didn’t rest as much as usual during the day. Thus, it was no surprise that I needed to wake her on Thursday. At 11:00, I played music to wake her up gradually. After 30 minutes, I went in to see if she was awake. She wasn’t. That is unusual. Normally, she would be relaxing in bed while the music plays.

When I spoke to her, she responded and seemed sleepy but not disturbed in any way. I sat down on the bed beside her and chatted with her a few minutes. I told her it was getting close to lunch time. She wasn’t interested and said she would get up “in a little while.” We didn’t have any immediate plans, so I told her I would check a little later.

I checked at noon and again at 1:30. She still did not want to get up. She had a hair appointment at 3:00, so I tried again at 2:00. Still no luck. This time she looked somewhat disturbed and said, “Shhh” when I spoke. She pointed to the ceiling and very softly said, “See them?” I nodded and hoped that she wouldn’t ask me about “them.” She didn’t.

I mentioned that she had a hair appointment. She wasn’t interested. It didn’t matter if I cancelled, but I thought it might help her to get up and out. I encouraged her to go but decided not to push her.

I left the room to cancel the appointment. When I returned, she still seemed a little disturbed. I got in bed with her and put my arm around her. I told her I was there to help her with anything she needed and that I would protect her. We were mostly silent for almost an hour before she spoke. She sounded more awake. I told her it was after 3:00 and wondered if she would like to get up. This time she agreed. She was at ease again.

I’m not sure I understand why. I do know that “things” in her brain are changing all the time. She can change very quickly. Typically, that happens after she rests. My own guess is that her mind wanders a lot and she begins to have delusions and/or hallucinations, some of which trouble her. In the case of not wanting to get up, being patient often works. Comforting her also helps to shift my role from being the bad guy who wants her to do something she doesn’t want to do to that of a partner who really cares and wants to help. There are still a lot of unsolved mysteries for someone caring for a loved one with dementia.

Something else unusual happened that day. As I was helping her dress, she mentioned that she was going to have a baby “tomorrow.” She often thinks of herself as a much younger single woman and mentions that she wants to have children someday, so I didn’t think much about it until she said something else a short time before going to dinner.

We were looking at a family photo book when she said, “Where is the baby?” Things like this always raise a question for me, “What do I say?” The reflexive answer is always “What baby?” or “We don’t have a baby.” I didn’t think they were appropriate. She obviously thought we had a baby. I saw her stuffed bear sitting in a chair a few feet from us and said, “Oh, he’s right there.”

When I do something like this, I am never certain that what I decided will work, but I felt my options were limited. This time I was successful. I brought the bear to her, and she took it in her arms and held it lovingly like a new mother holding her newborn. We spent the next 15 minutes talking about the baby. At one point, Kate spoke to her (the gender changes frequently) and said, “I love you.” Then she looked at me and said, “Did you hear that, she said, ‘I love you, too.’”

It was close to the time I planned for us to leave for dinner. When I mentioned that to Kate, she said, “What about the baby? I can’t leave her.” Then I dug myself a hole and climbed in. I told her I knew someone who could come over and pretended to make a phone call to him. I didn’t think this through but assumed she would forget before we left. Not so. For the next few minutes she waiting impatiently for his arrival. Then she got worried about leaving the baby. I told her he was a nurse with lots of experience, but she continued to be concerned.

My next attempt to address the situation was to tell her I could call him back and ask if he could meet us at the restaurant. She was fine with that. Once again, I depended on her inability to remember what we were going to do before getting to the restaurant.

She continued to hold the bear in her arms all the way to the restaurant and at least once or twice said something about our meeting the nurse. Fortunately, she completely forgot everything but her baby before we arrived. We got out of the car. She cuddled her bear in her arms, and we walked in.

The hostess took us to a table with just two chairs. I asked if she could bring us another just in case Kate wanted to put the bear in a chair while she ate. She brought one, but Kate continued to hold the bear in her arms. I wondered what she would do when the food arrived. I soon found out. She wanted to put the bear down but didn’t know where. I got up and took the bear and placed him in the third chair where she could see him. That worked. We had a good dinner. When we were through, I picked up the bear and gave him to her, and we walked out to the car. There were no more surprises that day.

(See the post above for Part 2.)

 

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.

Two of Friday’s Delusions

Kate’s brain continues to work on overtime. Her delusions are rampant. Fortunately, the vast majority of them are harmless. One of those occurred in the wee hours Friday morning.

Around 2:00 a.m., I awoke when I heard her say something. Initially, I didn’t understand, but she apparently had a dream. She talked about “Them.” As she continued, I learned that they were a couple who had experienced something that seemed to bother her. She was close to being in tears and talked about thirty minutes. During that time, I asked a few questions for clarification, but it still wasn’t clear what was disturbing her. After a while, she was whimpering. I said, “Tell me what’s bothering you? Why are you unhappy?” She said, “I’m not unhappy. I’m happy for them.” She never told me exactly why, but I gathered that a couple of young people she knew had gotten married. What I thought was an expression of sadness was really joy.

The other incident happened while the sitter was here. Except for a brief time when I went to the grocery store, I remained in the house. That has become typical during our period of sheltering. Kate spent part of the time looking at a photo book and talking with Mary. Then she rested for a short time. Just before 4:00, I overheard her say something to Mary that made me think she was concerned about something. I listened more closely and heard her say she needed to go home. Mary explained that she was at home, but, of course, that didn’t work. I’ve learned that myself, but I still test it from time to time. Occasionally, it works momentarily.

A few minutes later, I went in the room to check on Kate. She was emotional when she saw me. It was one of those occasions when she felt an intense need for my help. With much relief, she said she was glad to see me. She asked if I could take her home. I said I would. Although Mary wasn’t scheduled to leave for another hour, I let her go, and Kate and I went for a ride.

This was the second time recently when we left for “home” almost fifty minutes before I was scheduled to pick up dinner from a caterer at 5:00. I am glad to report that the ride was worth it. Kate was calm in the car and forgot all about going home. We brought the dinner home and had a pleasant meal and evening afterward.

Alzheimer’s continues to pull her in different directions. That requires more attention from me. It’s not just a time issue. It’s also figuring out how to respond to each new situation. Despite having a lot of tools in my toolbox, I frequently find a need for something new. I now have a better understanding of why “Do-it-yourself” home repair people always need new tools.

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.

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.

A Lengthy Conversation About a Delusion

Kate is not generally a big talker, but, periodically, she surprises me. I don’t always know what prompts her talkativeness, but I do know that it often involves a delusion of some type. She had one of those yesterday. As so often happens, she had been resting on the sofa in the family room. I was seated across from her. She rested over an hour before she opened her eyes. When she saw me, she said, “You can help me.” I asked what I could do, and she said, “Come over here.” When I did, she told me to “go over there.” I walked across the room and turned around. Then she said, “Come back over here.” I walked very obediently to her again. This time she told me to take a seat and pointed to the table in front of the sofa. I sat down and asked how I could help her. That opened the door to a conversation that lasted over an hour.

At first, it was very hard to make sense of what she was saying. She acted as though there were other people in the house with us. It turned out that she was talking about a group of longtime friends. At an earlier point in life, they were very close. Over the years, however, they had developed different interests. As a result, the occasions they were together were not as much fun as they used to be. As near as I could tell, some bitterness had developed among them. She never said there was one particular person who was the problem. She did say that they had all tried to reclaim the closeness of their previous relationship, but nothing had worked.

During the course of the conversation, she drifted away from asking my help to a broader emphasis about the nature of people and their sensitivity to the actions of others. In the end, she felt there was probably nothing that could be done to help her and her longtime friends because many of the circumstances in which they found themselves were so different now. She wasn’t, however, ready to give up.

I was primarily a facilitator in the conversation. I said very little except to nod my head or agree or make a comment that indicated I was listening. Late in the conversation, I again asked how I could help. She indicated I already had by listening to her.

Conversations like this intrigue me because so much of what she says makes sense with respect to human nature and the problems we encounter. At the same time, she is obviously experiencing a delusion that represents a break with reality. It’s just one more thing for which I don’t have a good explanation. I can only say that some of the circuits in the brain are functioning while others are not. There is also a good bit of inconsistency. Sometimes a circuit works. At other times, it doesn’t. That happens for all of us, but it is more dramatic for someone with dementia.

Alzheimer’s Continually Presents Surprises

As I’ve said many times, change is a big part of our lives now. Sometimes the changes seem to come out of nowhere and, thus, are more surprising than others. Yesterday afternoon, Kate experienced two changes in her mood and behavior that caught me off guard. The first one demanded a lot of my attention. I welcomed the second.

Our day had been a very good one. She was up at 7:30. She was confused, but it was a time when she was ready to do whatever I suggested. I told her I thought it might be good to get up and have breakfast. I had already finished mine but enjoyed having my coffee while she ate.

After breakfast we adjourned to the family room where I thought she would immediately decide to rest, but she didn’t. Instead, she was interested in looking at a photo book. It wasn’t long before she was tired and rested until time for an early lunch.

She rested again as soon as we finished lunch. She didn’t sleep much, and the last hour she tried to read a booklet that her mother’s Sunday school class had given her for her birthday in 1989. It was filled with things the class had heard her say many times during the years she had taught. I asked several times if I could read some of it to her. She finally accepted, and we both enjoyed ourselves.

Then it was time for dinner. I placed an order at a nearby Mediterranean restaurant. On the way, Kate asked for her lipstick. I was surprised. It had been months since she asked about lipstick, and I stopped carrying it. (I suspected that she must have thought we were going to see someone, but she didn’t say anything that would confirm this until much later.) As it turned out, this was the beginning of the first significant change in her mood and behavior. I explained that we could get it when we got home. I never thought she would remember it. This was another time I was wrong. As we were eating, she asked for it.

I went to the bedroom and brought it back to her. I started to open it myself, but she wanted to do it. She extended the lipstick too far, and it broke off. She grabbed it with her hands and put it on her lips. In the process she made quite a mess on her hands and her cloth napkin. I got something to wipe her hands, but it wasn’t easy to remove all of it.

As we continued eating, she asked about the location of her salmon and her cucumber salad on her plate. I hadn’t thought much about it, but she had pushed them around after I served her. I told her it was fine. I added that she could put them wherever she wanted.

It got more serious later. She had finished eating and was now applying her aesthetic tastes to the arrangement of her leftover food. That would have been fine, but she wanted my help. I said something that was a playful response to her request. That was the wrong thing to do. This was a serious matter for her. She had pushed all the remaining food together toward the center of the plate. She was concerned about a couple of blank spaces where there was no food. I picked up a couple of pieces of cucumber and filled in one of the gaps, but she wasn’t satisfied. She started moving grains of rice and pieces of tomato to balance the “food art” she was creating. She picked up several things and put them on her placemat. During this process that took about twenty minutes, she mentioned that “she would like it better over here (referring to portions of the food). She wanted to know what I thought. I said, “It looks good to me.”

Then she extended her art beyond the bounds of her plate. She crumpled a piece of a paper towel and put it on the placemat and pushed it toward the center of the table. She also picked up the two coasters and made them part of the art. Subsequently, she added two catalogs, a coloring book, and crayons. At some point, she said something about wanting it to look right for “them.” In this case, she was talking about people who were coming to the house. Finally, she stopped, but she wanted me to put the plate with the food in safe place. I put it in the refrigerator.

Then we went to the bedroom where I helped her get ready for bed. She has been getting in bed around 7:15 or 7:30 recently. This time she got into her night clothes but wasn’t ready for bed. She wanted to know what she should do. I asked if she would like to look at one of her photo books. She did, and I brought her the “Big Sister” album. I knew she would have problems with it, but I figured she would probably give up and go to bed. Wrong again. This came at a time when I wanted to clean up a few things in the family room and kitchen before taking my shower. She was insistent on my helping her. She seemed to be under pressure for something.

She asked what she should do. I explained that she should go through the book looking at the pictures. I told her she would see a lot of pictures of herself, her brother, and her mother and father. This didn’t help her. I pointed to a picture and told her some of the things I noticed about it and told her that was the kind of thing she could do. I was surprised when she seemed to get the idea. She started her own narrative with a photo. Then she said, “It’s your turn.”

I told her there were a few things I needed to take care of and would also be taking a shower. I said I would come back to her. That’s when she said something about our preparing for someone to arrive and that we were going to put on a show for them with the photo book. She would tell her story with one photo. Then I would tell my story with another and so forth. I helped a little longer before telling her to continue while I took my shower.

I was sure she would become frustrated and give up on the album by the time I returned. That was when I got the second surprise. She had changed completely. She had gone through the entire book and was on the last page or two. This was a surprise because she doesn’t usually spend that much time when she is looking at it by herself. She was her happy normal self. Apparently, she had forgotten about the guests who were coming and no longer had to worry about being prepared for them. Whatever the reason, it was nice to end the day with her in a good mood.

I should add that I had not previously observed anything that would make me think she was “sundowning;” however, her behavior was different enough from other situations that I thought about that. In the future, I will be more attentive to this possibility.

Living in Kate’s World of Delusions

Kate has experienced delusions for several years, but they occur more frequently now, especially since we have been homebound. Prior to my experience with Kate, I was prone to think delusions were all bad. I am discovering that is not so. Most of Kate’s are benign. They are harmless, some puzzling, but most quite interesting and reflective of her personal values. A few have been disturbing. These have involved a belief that no one likes her, that she has done something she believes was wrong, or that she has some obligation for which she is not prepared. The most frequent delusions involve projects designed to help those who are underprivileged in some way. Often, they involve programs to educate women in third-world countries but also in the United States.

During the past 36 hours, she has had two separate but related delusions that led to unusual conversations. They were very one-sided with Kate playing the dominant role. In fact, soliloquy might be a better word than conversation. The first occurred Wednesday night when I got out of the shower. She began a conversation that lasted almost a full hour and a half during which I said very little. I played the role of facilitator by simply listening, expressing agreement, or asking questions that would lead her to say more.

The second conversation occurred yesterday morning at breakfast. Yes, I said, “Breakfast.” It was another time she had gotten up early before I had fixed my own breakfast. I took the opportunity for us to eat together, never expecting another lengthy conversation. This one was an hour.

Both of them were interesting and involved a school. In each case, she did not know my name and had not recognized me as her husband. That was true all day Wednesday and a large portion of the day yesterday. It was clear Wednesday night that she was talking to me as though I were a potential candidate to join their program. Unlike other similar delusions, she didn’t say much, if anything, about the students. Her focus was entirely on the underlying values of school for those who worked (volunteered?) there. It was a diverse workplace where everyone respected the talents and personalities of the others.

Like another conversation we had several weeks ago, she responded to me just the way she would have if she had known my name and our relationship. Like the previous one, she repeatedly referred  to her husband and used my name each time. She kept saying, “I wish Richard were here. He could give you a better idea (tell you more, etc.).” While she didn’t say much about the students, it was another example of a program designed to provide education to people who might not otherwise have gotten it.

The length and complexity of her conversation was a striking contrast with most of her delusions. She talked non-stop, though in a relaxed style, for a full hour and a half that night. Several times I suggested that we continue the conversation the next morning. She agreed the last time when I mentioned wanting to think about it and talk in the morning.

I never imagined that she would start a similar conversation the next morning, but that’s what happened as we sat down for breakfast. I was never sure that it was an extension of the previous night’s conversation, but it was strangely similar in length and complexity. She also periodically mentioned her husband (me) by name. This time it wasn’t clear if I was a candidate for a position. It sounded more like I was someone who had expressed an interest in what she was doing.

Conversations like these are rooted in delusions brought about by Alzheimer’s; however, they also involve powerful expressions of Kate’s feelings and values. I find that comforting. It reminds me that the real Kate is still here.