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A Few Thoughts on Restrooms and Travel

I am writing this morning in our hotel room in Nashville. We came up yesterday afternoon to visit with our friend, Ellen, who had a stroke four years ago while visiting her daughter who lives here. Ellen has never returned to Knoxville and is now in memory care. She and Kate were best friends at the time of the stroke.

We cut out international travel in 2015. We made what I believe is our last trip to our children’s homes (Memphis and Lubbock) for Thanksgiving and Christmas last year. But we have continued day trips to Nashville and have recently made them overnight trips. That has been much easier because it is so difficult to get away early in the morning. I consider it a nice treat as well. Sometimes we meet other friends who live in the area on Saturday afternoon. We have a nice dinner and get to bed at a decent hour that night. Then we visit Ellen right after lunch on Sunday afternoon. We usually stay with her an hour or two and get back home in time for dinner.

Each time we make a trip, I reflect on how travel is going and wonder how long we will be able to keep it up. So far, I have been optimistic about continuing. With the changes that Kate is making, I am becoming more doubtful. I’m not sure at all, but I have the impression that other couples in our situation don’t generally continue to travel as long as we have. Travel can be very disorienting and disturbing to the person with dementia. In addition, the logistics place a greater demand on caregivers. It’s enough to get ready for one person. Packing for two is a greater challenge. When one person has dementia, the issues double.

Yesterday we had lunch in Knoxville before leaving. Each of us went to the restroom at the restaurant. As always, I walked Kate to the door of the ladies’ room. I opened the door and looked around to see if anyone else was in there and to identify the stall that Kate should use. I pointed it out to her, but that wasn’t enough. I had to walk her to the stall and direct her to the toilet. Then I stood outside the door in case she might need me. When she didn’t come out in what I thought was a reasonable length of time, I opened the door. She got a look of relief when she saw me. She couldn’t explain to me what had happened. My guess is that she didn’t see the door to exit the restroom and didn’t know where I was. This would not have been the first time this has happened. Usually, however, she calls for me. She might have done that this time, but I probably opened the door earlier than I have done on other occasions. What I do know is that it was a frightening experience for her. It was a little thing and forgotten quickly, but in that moment, she was really scared. It reminds me of being in a house of mirrors when I was a child. I was frightened. It seems to me that Kate, without a memory or the rational ability to deal with the situation, would be even more frightened. It was another reminder of what a security blanket I am to her. She generally doesn’t know what to do in a situation, but she counts on my knowing for her.

The drive to Nashville was an easy one. We relaxed at the hotel about an hour before going to dinner. We had a pleasant dinner and a good night’s sleep.
Kate was up at 5:00 this morning to go to the bathroom. We were back in bed by 5:30, but I don’t think either one of us was asleep again before 6:00 or shortly thereafter. I got up at 7:00, dressed, ordered and ate breakfast in the room, and checked email. I have lunch reservations at noon but hope that I will be able to get Kate up early enough to get there by 11:30. That would allow a more leisurely lunch before our visit with Ellen.

As I think about it, I don’t believe overnight trips like this are any more stressful for Kate than being at home. Yesterday’s incident in the restroom was in Knoxville before the trip. That is an issue that will have increasing implications whether we are home or on the road. I also find that she is confused about where she is when we are in a hotel, but that, too, is something that regularly happens when we are home. If we were to discontinue our trips, it would probably relate to the extra challenges for me. I don’t believe we are there just yet, but we may be getting closer. In the meantime, I am also trying to be more sensitive to how she feels when we travel. If I sense that she experiences anything more discomforting than being at home, that will be a clear indication that it is time to stop.

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Our Strangest Day

It began with yesterday’s “Surprising Conversation.” The rest of the day was filled with strange incidents. I’m sure I would have noticed more if I had been home during the afternoon instead of the sitter.

The first thing I noticed happened as we were walking in the door at Applebee’s for lunch. Kate said she wasn’t sure she would be able to eat anything. That remark and the expression of concern on her face made me think that she might be sick. She walked very hesitantly into the restaurant and took an unusual amount of time to walk up the two steps to the booths where we always sit. She seemed very confused. I asked her if she felt all right. She told me she didn’t feel “all right,” but she wasn’t sick.

She could never explain the problem very well, but it turned out that she thought two people that she and I know were out to get her. When the hostess put the flatware wrapped in a napkin on the table, I unfolded the napkin, placed the knife and fork at her place, and handed the napkin to her. She refused to take it. It seemed she thought “they” had contaminated it in some way. Later when the food arrived, she picked through everything and put some of them on the table beside her. She shredded some of the chicken and said, “See that. They got this too.” She put it on the table as well. It took her a long time to finish her meal, and she didn’t eat all of it. That is unusual, especially recently. I suppose it was her belief about contamination.

Before the sitter arrived, Kate went to the bathroom. Since that is the bathroom that the sitter usually uses, I checked to see if any clean-up was required. I discovered that she had taken one of three artificial tulips out of an arrangement on the counter, torn off the leaves and all the petals of the flower itself. She left them in the sink where it appeared she had washed them.

When Mary arrived, Kate was picking up two ceramic containers that used to have small cacti in them. She filled them with water and started looking for a place to put them. She and Mary had gone outside to find a place as I was preparing to leave. I left, so I don’t know what happened after that. When I got home, I found them in the laundry room sink.

After Mary left, I sat down on the sofa beside Kate. She said, “Is my mother still upstairs?” (We have a single-story house.) I told her that her mother wasn’t here. She said, “Well, where is he?” I said, “Who do you mean?” She said, “You know.” I never figured out who “he” was.

We went to dinner at our regular pizza place. While we waited for the pizza, she  diligently tried to tear her paper napkin into multiple sections. She carefully attempted to make each tear a straight line. As you can imagine, doing that with a paper napkin is almost an impossibility, but she gave it her best effort.

As for eating her pizza, she ate almost every bite of it. I know that doesn’t seem strange, but she has never liked pizza crust or crust on any bread. (She also has a distaste for the peel of fruit like apples, grapes, or tomatoes.) All our servers know that when she eats bread, she eats from the center out to the crust. Recently, I have noticed that she has been eating much closer to the pizza crust. Last night, however, she ate everything. She only left specks on her plate.

As we were preparing for bed, she started looking through the drawers in her bedside table. She also picked up a coaster on top and asked what it was. I explained it to her, but she didn’t understand. When I got out of the shower she had 8-10 things from the drawer spread out on the bed. She was trying to figure out how to use them with the coaster. She wanted me to look to see if she was doing it the right way.

Before calling it a day, she said something about having a big day “tomorrow” and would be leaving early for church. A few minutes later, she asked me what time she should leave. I told her 10:30 would be fine. She said that was later than she wanted and would probably leave by 9:30. I feel sure she was living in a “flashback” to the years she was our church librarian. She gave that up in 2009 because she was beginning to have trouble doing the work the way she knew it should be done. That was a year and a half before her diagnosis.

What I have reported above is just what comes to mind as I write this post. She made other comments throughout the day that indicated she was experiencing delusions or hallucinations. Like so many things, I don’t know how to explain what she was experiencing. I do know that these symptoms are not unusual for people with dementia. For that reason, I don’t feel any sense of alarm. She has had periodic experiences for several years, but this was the first time so many different things have occurred over the course of a one day. I take it as a further sign of her overall decline.

What is in store for today? I am eager to see.

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Kate’s iPad

Since giving up her computer and then her yardwork, Kate has been dependent on her iPad for all of her self-initiated entertainment. The past several years she has spent as much as eight hours a day working jigsaw puzzles on it. The past few days she has spent very little time with it. The last three nights when I checked the battery level, it was at 88% of capacity or greater. That is the best measure of how little it was used this week.

Some of that relates to her sleeping and resting. Until a year ago, we went to Panera almost every morning. We usually stayed more than an hour and sometimes two hours during which she worked steadily on her puzzles. Now it is unusual for her to get up before 10:30 or 11:00, and we go straight to lunch.

Similarly, she used to use her iPad at home after lunch and often at Barnes & Noble. We haven’t been there in several months. She usually rests after lunch, sometimes as long as two and a half hours. Thus, the sleeping/resting explains why she is using the iPad so much less than in the past, but that isn’t all. She also finds it much more difficult to work her puzzles. She asks for my help significantly more, but she also has more trouble understanding what I tell her. My instructions mean nothing. She is generally more persistent in trying to complete her puzzles, but, increasingly, she just quits or asks me to complete them.

I know she will have to give up the iPad sometime in the future. I just hope she can hold on a while longer. I’m not counting on it, but, perhaps, her photo books and the coloring book may fill in the gap.

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More Delusions/Hallucinations

Over the past week or two, Kate has experienced more “delusions” than in the past. I’m not actually sure that is the right word. Most often they involve things like a belief that we are somewhere other than our home, that there are other people in the house, and that she sees people or things when nothing is there. When I noticed that she was about to get up yesterday morning, I went to the bedroom. As I approached the bed, she said, “Don’t touch me.” I thought this might be a time when she didn’t recognize me at all, but then she added, “I’ve got a cold.”

As she got out of bed, she insisted that she do it herself without my help. She didn’t want to hold my hand on the way to the bathroom. Once there she continued to be careful about my not touching her because of her cold. What was especially unusual about this was that she has never before shown that kind of concern about spreading her germs to me. I have always been the one to be concerned about passing along a cold to her or her passing along one to me. I didn’t observe any signs of a cold. I didn’t know if she really had one or if she had a dream in which she had a cold.

After finishing in the bathroom, she went back to bed. It was 8:00. She had plenty of time to get back to sleep before getting up for lunch. When I went back to wake her at 10:45, I found that she was awake. This time she didn’t say anything about having a cold. Neither did I see any signs of a cold during the time she was dressing or as we drove to lunch. I didn’t mention anything a cold during lunch, but I did ask if she was feeling well. She said she was fine and never reported any health problem the rest of the day. I am left to believe that her earlier mention of having a cold must have been the result of a dream.

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It’s the Thought That Counts.

Long before Kate’s diagnosis, one of the first signs I noticed was that she often failed to prepare for dinner. We had eaten dinner out a good bit since she retired, but we still ate at home for most of our evening meals. Gradually, I noticed that she wasn’t shopping for groceries or thinking about dinner at all. I responded by suggesting that we eat out whenever she hadn’t prepared our dinner. Then I began to cook a few meals. I didn’t want to do that all the time, so I started alternating between a few home-prepared meals with meals I brought in from restaurants.

Kate appeared not to notice the shift in responsibility for meals from her to me, and rarely offered to help. As I recall, that suited me because it was hard for her to do things the way I thought they should be done. Difficulty following procedures is another of the symptoms that accompanies Alzheimer’s.

She has rarely offered to help with any of the household chores; however, several times in the past few months, she has done so. At this point, I felt it was good for her to feel useful. Each time I accepted her help.

Last night as we returned home from dinner, I stopped in the driveway and told her I was going to get the mail. She said, “I’ll get that for you. Just go on, and I’ll meet you in the house.” I gladly accepted but was concerned about her walking from the mailbox back to the house. I moved the car forward but stopped before entering the garage. That enabled me to watch what she was doing.

When she got out of the car, she stopped to look at the plants along the driveway. I watched to see if she would remember to get the mail. She didn’t. She walked up the driveway to the back of the house. She stopped at several shrubs and pulled off a few small limbs. This was a reminder of the days when she spent as much as 6-8 hours a day doing just that. It’s been about three years since she stopped because she had stripped the shrubs of all their leaves as well as the branches. They had either died or were in such bad shape that I had to remove eighteen of them. Last year I engaged someone to get the landscaping back in shape. The yard is now getting back to where it was before.

I wasn’t worried that this might be the beginning of repeat of that experience. Instead, I was especially appreciative of Kate’s desire to help at this particular point. After all, her memory doesn’t permit her to follow through with almost anything she starts. It reminds me of an old song, “Little Things Mean a Lot” and the saying that “It’s the thought that counts.”

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Three Days in a Row with More Confusion Than Usual

After getting up early and taking a shower, Kate went back to bed yesterday morning. As she had done the day before, she got back in bed after her shower and didn’t want to get up. I was going to my Rotary meeting, and Kevin was taking Kate to lunch as he has done on other visits.

Although she seemed to recognize me when she got up the first time, she didn’t when I tried to get her up later. She asked who I was, and I told her my name and that I was her husband. She didn’t believe me. As I usually do, I backed away from trying to convince her. I decided to focus on getting her dressed. We immediately ran into a problem. She was still undressed following her shower and was uneasy about letting someone she didn’t know help her with her clothes. I didn’t push but continued to talk with her. She asked about her clothes several times. I told her I had them right there on the bed and would help her get dressed. She finally consented. As she was dressing, I told her that Kevin was here and would be taking her to lunch. She didn’t know who Kevin was. I explained, but I wasn’t successful. I told her she would recognize him when she saw him.

As it turned out, I was right. At least she acted as though she “knew” him. That didn’t mean she remembered his name or that he was her son. She did, however, greet him happily. Then for a few minutes she gave her attention to the flowers inside and outside. She followed that by asking his name. Then she commented on his voice. She said, “You sound like a nice guy. I don’t know why I say that. I just sense it.”

We went into the kitchen where I had put out her morning meds. While she was taking them, she asked again about Kevin. I told her that he was our son. She found that hard to believe and asked Kevin. He confirmed what I had said, but she was still skeptical.

When we got to my office where I was meeting a colleague, Marianne, I told Kate I would be going to Rotary and she would be going to lunch with Kevin. She said, “Why don’t you go along with us?” I told her I could have invited her to attend my Rotary meeting but thought she might not enjoy it. She agreed, but she still looked like I was deserting her.

After lunch, we met back at the office and then went home where she rested until it was time to take Kevin to the airport for his flight home. From there we went directly to dinner. Once we were home, she wanted to rest again. She rested until 8:00 when I suggested we get ready for bed. I got the impression that her memory of me as her husband was “on again” “off again” for the rest of the evening, but she wasn’t like she was during the morning. She clearly was quite comfortable with me and showed complete trust in me though she had been suspicious in the morning. I don’t think I observed anything that I hadn’t seen before; however, the depth of her confusion seemed greater than I have noticed before. I think she was quite confused much of the day but still functioning pretty well. She even surprised me on the way home from dinner when she made an observation about the two of us. She said, “When you say silly things, I don’t get mad at you. I know you are just trying to be funny.” She may not know my name or our relationship, but she has a keen insight into my personality. She “knows” me.

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A Good Day But a Lot of Confusion

It’s hard to summarize in a heading what yesterday was like. Bare with me as I try to explain.

The day began differently than others over the past few weeks. She has been getting up rather easily when I woke her sometime between 10:30 and 11:00. There have been three or four days when I didn’t have to wake her at all. She waked up on her own at earlier times. In fact, it was earlier enough that we made it to Panera three or four times over the past week or ten days.

Yesterday was different. I was about to get up at 5:50 when she wanted to go to the bathroom. She didn’t display any of the confusion she has on some occasions, but she sounded relieved when she said, “I am glad you are here.” She repeated that a couple of times on the way back to bed. I quickly decided it was best if I got back in bed with her. It was the right thing to do. She was feeling insecure over not knowing who she was, who I was, or where she was. I stayed with her until 6:50. Then I got up to prepare for the day. She was still awake when I left the bedroom. I told her I would be in the kitchen. She was completely comfortable with that.

Before I ate breakfast, she started to get out of bed. I went to the bedroom and found that she wanted to get dressed. It was still early, and I asked if she would like to take a shower. She did. When she was finished, she went back to bed. The fact that she had gotten up and taken a shower so early led me to believe I would have no trouble getting her up for lunch. I was wrong.

We have not been to church in almost a year and had planned to take Kevin with us. To insure that we would be on time for the 11:15 service, I went in to wake her at 10:00. She didn’t want to get up. I decided not to push her. I went back around 10:20. She was firm in her intention to remain in bed. Kevin and I changed our plans for church. I made a noon reservation at Bonefish Grill. Finally, I went back to wake her at 11:00. She still didn’t want to get up, but she gave in with a little encouragement. She wasn’t happy about it, but her mood quickly changed when she saw Kevin as well as the flowers and pictures in the family room.

She surprised me at lunch when she expressed displeasure that I didn’t order a salad for her. I never order a salad for her because she doesn’t enjoy salads. She has never complained before. I offered to get her one or to share mine, but she didn’t want anything but two of my olives.

I wasn’t surprised that she wanted to rest when we got home, but, as usual, she got up rather easily when it was time for us to leave for a live performance of Hello Dolly at one of our local theaters. She did surprise me, however, during the intermission when she struck up a conversation with a man in the lobby. He was standing by the three of us and told us he had first been to this theater when he was a child. Kate asked him what he did. He told her he was a retired radiologist. Kate said, “What’s that?” He began to explain by giving her a tidbit of history including the early experiments of William Roentgen. Kate expressed interest and complimented him about the contributions that he (the man she was talking with, not Roentgen) had made. He tried to play down his own work, but she insisted she accept her compliment. I found it a most interesting conversation. Except for not knowing anything about radiology and x-rays, she seemed quite normal. She was a very active participant in a conversation with a total stranger.

After leaving the theater, we stopped by a pizza place that had been a favorite of our children’s when Kevin would have been as young as two or three. We finished the meal by sharing a piece of cheesecake. Kevin and I didn’t waste any time sampling it. Kate apparently didn’t notice it was sitting in front of us. I put some cheesecake on her fork and placed it on her plate. She still didn’t eat it or acknowledge that it was there. I pointed it out, but she couldn’t understand what I was trying to tell her. She put her plate aside and pulled the plate with the cheesecake toward her. I explained that I had already cut a piece for her. Again, I showed her the fork with the cheesecake on it. She was still confused. After several tries, she finally understood.

When we got home, she asked what she could do. I handed her the iPad and suggested she work on it. She said, “What’s this?” That was not an unusual response. She almost always takes interest in her iPad, but she often doesn’t know what it is. When I mention that she can work puzzles on it, she understands. That is what happened last night. On occasion, she is confused as to what she should do after the puzzle pieces are scattered. Last night was one of those times. I explained, and she went to work. She had a very difficult time. I don’t recall her every having more trouble before. In my effort to help, I may have exacerbated the situation. I was trying to be patient, but I realized the tone of my voice was stronger than usual as I pointed to specific pieces and then to places where they should go. That probably frustrated her even more. I decided it was best if she dropped the puzzles for the night.

Then she picked up a word puzzle book on the table beside her. I noticed that she was holding it upside down. She seemed confused. I turned it right side up. Then she put it aside and picked up the coloring book I had bought her months ago. She has never shown any interest, but I have kept it on the table beside her chair in the family room since then. Once in a while, she picks it up and looks at it. I picked out a crayon and gave it to her. She wasn’t sure what to do with it. I gave her what was an insufficient explanation. Then I decided it was better to demonstrate. I colored a small teardrop object on the page and gave her the crayon. From there she took over and colored for the next twenty minutes or so before it was time to get ready for bed. I was pleased that she was interested and hopeful that she may try it again. That could be a good replacement for the iPad as she loses her ability to work her puzzles. I was also discouraged when I watched her color. She didn’t appear to know what to do. What she colored looked like something that a young child might have done. The most important thing, however, was that she found something she liked.

There are two things I can say about yesterday. First, it was not a good day in terms of Kate’s Alzheimer’s. I don’t remember a day when she has been as confused for as long a period of time. Second, all-in-all it was an enjoyable day. She especially enjoyed the musical. The day was another good example of how mixed our days can be and that the Happy Moments still outweigh the sad ones.

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Insecure, Confused, but Happy and Appreciative

It would be quite an understatement to say that Kate is changing more now than at any other time since her diagnosis. Day before yesterday was a good example. Just as I have been adapting to her getting up late, she has surprised me several times over the past week. That morning she was up at 7:30. That’s at least three hours earlier than when I usually begin to wake her. It was also a day when she seemed comfortable with her surroundings. She acted like she knew I was her husband but didn’t. She was very dependent. She wanted my directions on almost every step from getting out of bed to where to go when I got her dressed. She was eager to have a shower, something I was happy about. She often resists.

We made it to Panera before 9:00 where she worked happily on her iPad an hour. Then I noticed that she was not working her puzzles, just sitting and looking a little discouraged. It was obvious she was frustrated. When I looked at what she had done, she had completed all but two pieces and couldn’t figure out where they went. I showed her, but she couldn’t understand. I put them in place for her. I felt sure that she was tired from having gotten up so early. It was early for lunch, but I decided it would be better than going home where she might nap and then have a hard time getting up.

She was quiet on the way to the restaurant. As I was helping her out of the car, she said, “I want to thank you. I feel better.” I told her I didn’t think I had done anything special but that I want to do anything I can to help her. She looked at me very seriously and said, “You do. You have no idea how much.” I am still not entirely sure what she was thinking about. It might have been the way I responded to her when she was frustrated over her puzzle. It could also have been that she imagined something as we were driving to the restaurant. As we walked to the entrance, she stopped as she always does to look and comment on the flowers just outside the door. When our server greeted her and asked her how she was doing, Kate said, “I’m doing much better now.” That’s exactly how it seemed. She was fine the rest of the day.

Eating early allowed us to get back with plenty of time before the sitter. I felt sure she would immediately head to the sofa for a nap. Instead she started working a puzzle on her iPad and continued until just before the sitter arrived. Then she decided to rest on the sofa. That’s where she was when Mary came. She greeted Mary with enthusiasm. When I told her I was leaving for my platelet donation, she smiled and said goodbye. She didn’t look at all unhappy to see me go.

When I returned, she was seated on the sofa looking at a photo book. She said, “We need you.” I took note of the fact that she said “we” and not “I.” Then Mary told me that she had not napped and explained that Kate had wanted to go outside. She stooped down to look at something in the yard or near a shrub, lost her balance, and couldn’t get up. Mary helped her but said it was difficult. I know what she means. I find that it is getting a bit challenging to get her into a sitting position when she is lying on the bed.

From what Mary told me, Kate had been a little upset and confused, but she was calm when I got home. The only problem then was that she was hot from being outside. I got out a small floor fan and used it to cool her off. Fifteen minutes later, she was fine again and ready for dinner.

At dinner we encountered something that is becoming a regular part of our dining experience now. She has difficulty knowing where she should sit. I always walk to her chair and pull it out from the table. I use my hand to direct her to the seat and say something like, “Sit right here.” Almost without exception, she interprets that as my chair and goes to the chair across the table from me. Sometimes I accept the chair she has chosen. When I have a specific reason for choosing a different chair, I may simply take her hand and guide her to the chair I selected. This, and the fact that she is very careful as she takes her seat, means that it takes longer for us to be seated than most hostesses are prepared for. Most of them seemed to be trained to remain at the table until you are seated. Of course, since we are regulars at all the places we visit, the hostesses are well aware of Kate’s diagnosis and are very understanding.

During dinner, Kate talked a good bit about what I do for her and how much she appreciated that. I told her our son was coming for a visit the next day. During our conversation, we spoke very naturally about our marriage. She commented on how happy we had been and then said, “What’s your name?” I told her, and she asked her own name. I am still amazed at how casually she does this. It’s the kind of experience that is both happy and sad. I am happy that she doesn’t seem frustrated, but it is also sad that she can’t remember. It makes me think about all the things she must not know if she is forgetting her own name and mine. What is it like to look around and not know who or what anything is? The good thing is that she still responds intuitively to people and things around her and still likes so many things. She continues to get pleasure out of life. That is something that may be hard for people without dementia to understand.

Later that night when we were in bed, she mentioned how good she feels when she is in Texas. I could tell by the way she said it that she thought she was in Texas at that moment. I didn’t say anything to dissuade her. She was happy. That’s a good way to end the day.

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Music and Rest

Even though I believe so strongly in the power of music, I am still occasionally surprised by experiences with Kate. Day before yesterday, she did two things that I didn’t expect. The first occurred as we were about get into our car after lunch. I told Kate I loved her. I have no idea why, but I immediately thought of that old song “I Love You a Bushel and a Peck.” I can’t remember the last time I heard it. It certainly isn’t a song one hears very often.

When I got in the car, I googled it and pulled up a rendition by Doris Day. After she had sung the line “I love you a bushel and a peck,” Kate sang the following line in sync with the music – “A bushel and a peck and a hug around the neck.” Of all the names of people, places, and things that have been lost in her memory, how did this one pop into her mind, and so quickly? I thought for a moment. Then I asked myself if this was any more puzzling than my remembering the song itself when I said, “I love you.” I’ve said that thousands of times without making that connection. Why did I make it this time? We have so much to learn about the brain.

The other incident occurred the same day. We were in the car, and “If Ever I Would Leave You” was playing. It wasn’t long before she said, “I would never leave you.” I took note of her remark because of her emotional experience with another song that was sung at Casa Bella last week. I had wondered to what extent she was able to make a connection between the words of a song and our own relationship. My guess was that she was moved by the music and lyrics but probably didn’t make a connection to us. I still think that. On the other hand, this week’s experience let’s me know that she is able to process more of what is said than I usually believe or report in this blog.

I have, however, noted that she often gives evidence of rather keen insights concerning what is going on around her and between the two of us. I take these experiences as examples of her intuitive abilities, and they continue to work amazingly well. One of those occurred last night as we left Casa Bella. She thanked me for trying to keep her from “making an idiot of myself.” While I always assure her that she gets along fine, she recognizes the many problems she has. Without a memory, she can’t remember all the things each of us does when we are eating out and feels insecure. Sometimes, as she did last night, she worries about how to order her meal. She kept picking up the menu and asking for my help. Each time I told her what I selected and would order for both of us. She was relieved, but she couldn’t remember. She asked for help another 6-7 times before the server took our order. There were a number of other things for which she needed help. It’s hard to imagine the pressure she must feel in situations like this.

Perhaps it is this kind of pressure she experiences throughout the day that is now causing her to rest more. She is making a habit out of resting immediately after we get home from lunch. That happens even on the days she has slept as late as 11:00. The length of time she rests is also increasing. After lunch, she sometimes rests until time for us to leave for dinner. In addition, two nights this week she has gone to bed shortly after 7:30.

The good news is that she continues to be happy even in situations like last night. I believe it is good for her to get out despite the challenges. I am hopeful about continuing a while longer.

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An Early and Cheerful Start to an Emotional Day

Kate got up on her own about 9:30 yesterday morning. She didn’t seem groggy at all and was quite cheerful. I took advantage of the occasion and got her to shower. That’s not something she usually wants to do, but she always likes it once she is under the water. As I helped her dry off, I joked that this must be like having her own personal spa service at home. She laughed and said, “That’s something I like about you. You have a sense of humor.”

Her good humor did not indicate a lack of confusion. As she was putting on her shoes, she pointed to the carpet and said something about her mother. I didn’t know what she was talking about, but it sounded like she saw her mother on the floor.  It turned out there was a white spec on the dark blue carpet that bothered her. I think this was one of those instances in which she just couldn’t think of the correct word. How she made a connection to her mother is a mystery.

Because she was up earlier than usual, we had a little time before we needed to leave for lunch. I decided to make use of the time by showing her pictures of her family. We began in the hallway outside our bedroom where we stopped to look at those of her grandmother and mother. I tell her the same stories each time. She is always surprised and interested. She almost always guesses that the picture of her mother is her own photo. That is not something limited to this particular picture but others that we see in her various family photo books.

As I talked about her mother, she became very emotional. She was, as usual, struck by her mother’s smile and her eyes. Despite her interest, I gave her more information than she could take in and said she thought we should move on. Then she did something I have not seen her do before. She said goodbye, touched her fingers to her lips, and placed them on her mother’s face. Her feelings for her mother are even more intense now than ever. I got the sense that she thought we were in her family’s home in Fort Worth. I guess she was thinking that we were leaving to return to Knoxville. She wanted to take the picture with us. I was about to tell her she could when she said, “Maybe this is a better place for it.” I agreed.

We still had another thirty minutes before we needed to leave, so I brought her to the family room where we looked at a photo of our daughter’s twins when they were six or seven. I suggested we sit on the sofa where I could show her the photo book of her mother’s family. She was immediately taken by it and was very emotional as I told her the names and read her the text that accompanied the photos. We didn’t get further than a few pages because she was getting too much information, and it was close to time for us to leave. She said something she has said a number of times before. As I was reading the text, she asked me to write this down so that she could have it for the album that she wants to make. It always seems strange to me that she wants me to write it down when it is already so nicely summarized in her books. Of course, I am looking at this as someone who does not have dementia.

Before leaving for lunch, she thanked me for bringing her here and commented on the many experiences we had had in this place. I am making this sound more straightforward than it really was. She couldn’t find the words she wanted. I guessed what she was trying to say, and she agreed with my interpretation.

Her emotions were obvious in several other ways at the house and the restaurant. I gave her a little mouthwash but didn’t tell her not to swallow it. I think this was a first for me, and, usually, she is insulted when I tell her. This time she swallowed it. Fortunately, it was not Listerine. She doesn’t like that and would have reacted strongly. This was a Colgate product that does not contain alcohol, so it didn’t bother her at all. When she swallowed it, I reflexively told her she shouldn’t do that. She responded emotionally with tears. This time because she had done something wrong. As with other things, she is also mindful of and very sensitive about doing the right thing. I think that is what is behind all of her questions when we are eating out. She doesn’t like to make mistakes but knows she makes a lot of them.

When we arrived at the restaurant, our server rushed over to give her a big hug. Kate was overcome with emotion and was teary all the way to the table. As we talked during our meal and in the car on the way home, she had teary moments as we talked about our marriage and children. In keeping with her growing insecurity, she expresses her expressions of appreciation for helping her. There is no question but what she recognizes she needs help and that I am the primary person who provides it.

She surprised me after lunch. She didn’t say anything about wanting to rest. She sat down with her iPad and started working jigsaw puzzles. She did need occasional help, but she worked three and a half hours without a break. She still showed no sign of wanting to rest. It was a high energy day which is very unusual. The battery on her iPad was exhausted before time for bed.

She was very talkative during and after dinner although I could not understand everything she said. In fact, I understood very little. When we adjourned to our bedroom for the day, she worked on her iPad, but her mind was on something else. The night before and last night at dinner it was clear that she thought we were having company at the house. It sounded like a big event. She had asked me if I had taken any pictures of the people the night before. I told her I would get them later. Last night she wanted to know if I had the camera ready. After a while, she asked if I had taken a picture of her. I told her I hadn’t but would be glad to do that “right now.” I picked up my phone and took it.

The one thing I could understand was her strong sense of insecurity as expressed in her exaggerated words of appreciation for me. I don’t ever recall a day in which she so frequently thanked me and expressed her feelings for me. At no time during the day did she act in the least way irritated with me.

All of her behaviors are indicative of how much she has changed over the past few weeks or months. Despite recognizing this change, I felt good about the day. She was unusually happy, and I was able to deal with her moments of insecurity. I find that I tend to be sad as I look to the future. “In the moment” I almost always feel good. The hardest thing for me to deal with is her moments of anxiety. Fortunately, they don’t occur often and are short-lived.