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Kate’s Final (?) Appointment with her Ophthalmologist

We may be reaching a point at which we no longer schedule routine medical appointments for Kate except for her primary care physician. It is becoming a matter of assessing the risks vs. the benefits.

Yesterday she had a routine appointment with her ophthalmologist. This is one in which I had a special interest. I have commented many times on her eyesight problems. Kate is unable to recognize that she has a problem, but she seems to see some things and not others. For example, she may not see a large object on a counter but notice a small spec of dirt on our carpet or small particles of food on a restaurant table. Until recently, I had attributed her vision issues to her Alzheimer’s rather than a physical problem with her eyes. Two particular issues, however, have made me wonder if it could be something like macular degeneration. In a phone conversation with her ophthalmologist I confirmed that at the time of her last check up in February, there were no signs of a physical problem and that it was unlikely that it would have developed since then. Nonetheless, I wanted to know for sure. Yesterday’s visit provided the answer. It was just what I thought. Her eyes are fine. Her vision problem must be related to her Alzheimer’s.

There is more to report, however. Appointments themselves are becoming a problem. Kate has little patience, and waiting is a normal process in most health-related professions. The notable exception is her primary care physician who is associated with a gerontological practice. The wait time in the lobby is not usually more than 5-10 minutes. The appointments are not scheduled as closely together. Her doctor, and the others we have seen, always take a lot of time with their patients, many of whom have dementia. They know how to relate to patients like Kate.

I don’t mean to suggest Kate’s eye doctor and/or staff are insensitive to the needs of patients with Alzheimer’s. They aren’t, but the system is set up for non-dementia patients. That means waiting times exceed Kate’s patience. Her appointment was at 1:15. She didn’t see her doctor until 2:15. To be fair, she was only in the waiting room about fifteen minutes. She spent another 15-20 minutes with the doctor’s assistant who was getting information, checking her vision, and giving her the necessary drops before the doctor arrived. That left about thirty minutes before she saw the doctor. Kate has trouble understanding the instructions anyone gives her, so that complicates every portion of the examination. Neither does she understand why she needs the exam in the first place. Yesterday’s exam was particularly difficult for both Kate and the assistant.

The good part is that she took it somewhat good-naturedly. She joked a lot, and both the assistant and the doctor got a kick out of her comments. Sometimes she was quite serious. When the assistant checked her eye pressure, Kate was startled, pulled herself away, and told the assistant to stop. Then she did something that surprised me. She looked at the assistant and spoke to her  as though she were a teacher. She said, “Talk slowly. Go one step at a time, and give me clear instructions.” That is exactly what she needs. Of course, not even that will insure that she understands. At the end of the visit, the doctor looked at Kate and said, “Well, I have good news for you. You don’t need to come back for a year.”

When we checked out, it was a challenge finding an afternoon appointment at our preferred location. We finally found one at 11:55 on August 28 of next year. I can’t imagine that Kate will be up to another visit when the time comes around. I feel sure her doctor felt the same way, but, like so many other things, we will see.

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Sleep and Rest

Until a year ago this past April, Kate’s sleeping pattern had been pretty steady. I’m not at all sure that she sleeps any less today than she did, but the time she gets up often varies. More than half the time I get her up between 10:30 and 11:30 depending on whether we have any special obligations. Sometimes, as she has done in the past couple of weeks, she gets up as early as 8:30 or 9:00. It is not uncommon for her to be awake when I go to wake her. She usually goes to bed between 8:30 and 9:30. I don’t think she is usually asleep until 10:00 or later. She must get about 12-13 hours sleep a night. Eighteen months when she was on Trazadone, she slept about 13-15 hours.

The major difference now is the amount of time she rests without going to sleep. Yesterday, for example, I got her up around 11:00. It took an hour and a half for her to shower and dress before leaving for lunch. We got to lunch just before 1:00 and arrived home at 2:30. I suggested that she and I look through one of her family photo albums, but she wanted to rest which is typical when we get back from lunch. She immediately went to rest on the sofa in the family room. She rested until 5:30 when I suggested we go to dinner. There was a short period, no more than 15-20 minutes, when she appeared to be asleep. Otherwise, she was just relaxing.

I am guessing that the strain of social interaction, looking through photo albums, and working on her iPad wear on her in a way that is hard for me to understand. She doesn’t usually show any special signs of fatigue until after we head home from the restaurant. During lunch, she sometimes tells me she wants to rest as soon as she gets home.

As I have mentioned before, the amount of battery life left on her iPad is a good indicator of the amount of time she uses it. Though it remains her primary self-initiated activity, she clearly doesn’t use it as much as she did. That is a result of her resting more because she hasn’t replaced the iPad with another diversion.

The most significant change brought about by her current pattern of sleep and rest is our getting out to Panera in the morning and to Barnes & Noble in the afternoon. That had played a major role in our social engagement. That makes our lunches and dinners our primary means of social contact. That continues to work well for us.

The mornings are times for me to take care of all the routine household chores and other personal obligations I have. I now wash as often as four times a week. A year ago, washing was just once a week on Saturday morning. I also find that the afternoons are pleasant times for us. When she is resting in the family room, I always take my laptop or iPad and stay in the room with her, and, of course, music is always playing. Since Kate is not asleep, we also engage in intermittent conversation. It makes for a very relaxing afternoon for both of us.

Life is different now, but we still get along “remarkably well.” I certainly expect more challenges like the ones we have faced recently, but I am also optimistic that we will handle them well and be grateful for Happy Moments past, present, and future.

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And More Emotional Experiences

When I arrived home to relieve the sitter on Friday, Mary heard me open the door and told Kate I was home. I walked into the family room. Kate had been resting on the sofa and gotten into a sitting position when she saw me. She had a big smile on her face but immediately burst into tears. She couldn’t stop and continued until after Mary had left. I sat down with her and we hugged. She said, “I’m so glad to see you. I was so worried.” This was the way she had reacted when I returned two weeks ago. There was one big difference. She didn’t recover as quickly. Over the next thirty minutes, she continued to express how happy she was to see me. It wasn’t until we went to dinner that she had fully calmed down.

Last night Kate had a very traumatic experience involving a delusion that I had had a fight with her mother who died in 2005. The way she described it this was something that she had just overheard. She had been in bed for about an hour, so I suspected that she had had a dream. After reflecting on it, she probably had never gone to sleep. On several previous occasions, I have noticed that she has had similar experiences, but this one was definitely the most intense. She was angry with me. As I tried to calm her, she shifted her story. Then it sounded like the fighting was between her mother and father. A few minutes later, she settled into its being between our neighbors.

Several times she said she wasn’t going to talk about it anymore. Then she would continue. She kept talking about the “foul” language they were using and how sorry she felt for the children. She was so upset that she said she wanted to move out of the neighborhood. Trying to calm her, I played along as though I believed what she said and suggested that we might talk about moving in the morning. I knew that it would all be forgotten then. I also diverted her attention by talking about how fortunate we have been to have a marriage that has been free of the kind of fighting that she had observed. That seemed to work. She settled down, and we called it a night. The entire episode lasted about an hour and a half.

On the way to lunch today, I played some music. She cried during “Try to Remember.” This is a song she likes, but I don’t recall its leading to tears before. Then at lunch our server approached the table to give Kate a hug. As she did, she said, this is a day when I really need a hug. Then she proceeded to tell us that her neighbor’s dog had killed her cat this morning. That was all Kate needed to hear. She was in tears, and the server felt bad about having said anything.

It’s not just the tearful emotions that are elicited so easily. This morning as well as other times recently, Kate has responded to me with anger when I tried to help her with something that she wanted to do on her own. She is very much on edge now.

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Kate’s Insecurity

Last night, Kate and I ate a sandwich at Panera. As we prepared to return home, she wanted to take her cup of iced tea with her. She started to pick it up when she asked if I would carry it for her. She said, “I don’t want to spill it.” I told her I didn’t think she would spill it but that I would be glad to carry it for her. She thanked me and said, “I just don’t want to do anything stupid.” I tried to assure her she wouldn’t, but she wouldn’t believe me.

I put her drink in the cup holder between my seat and hers. Before I backed out of the parking space, she wanted a sip of tea. She started to pick up the cup but decided against it. Again she mentioned that she didn’t want to do anything stupid. I said, “You won’t do anything stupid.” She said, “I do all the time.” Once again, I tried to boost her confidence. She dismissed what I said and said, “I could think of some things, but I can’t remember them right now.”

When we got home, she continued to be concerned about doing “stupid things.” She wanted me to tell her everything to do or, at least, ask my permission to do things like taking her shoes off and lying down on the sofa. I told her I was going to brush my teeth. She didn’t want me to leave her and said, “Just so that I can see you.” I told her I would get my toothbrush and bring it back to the family room. When I got to the bathroom, I just quickly brushed and went back to her. She hadn’t worried, but she mentioned that she felt better when I am with her, that I keep her from doing stupid things.

Because her memory is so poor it is easy to think that she doesn’t understand anything about what she is doing. This particular experience is just one of many that remind me that she understands a lot more than it may appear. I don’t think it is something that lingers. She doesn’t think about it all the time, but she definitely has some knowledge of how hard it is for her to do the simplest things. She is right that she is inept at doing many things that were previously easy tasks for her. Now everything is a challenge. The other night at Casa Bella she knocked over a full glass of water. I am sure she was embarrassed. I think the people at the other end thought I had done it, and I was glad to take the blame. In fact, it could have easily been me, but it is the kind of thing that piles on top of other experiences that let her know she does not function very well at all.

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Yesterday’s Lunch Conversation

Yesterday was one of those days when Kate didn’t remember my name or our relationship. As usual though, she was perfectly comfortable with me. I took her to the bathroom. She didn’t seem especially confused, but she didn’t want me to leave her. She always takes a lot of time in the bathroom. Yesterday she took even longer. During that time, she talked to me about what she was doing as she washed her hands, arms, and face. It was very much like what she does in bed at night when she pulls strands of her hair. She refers to it as “working.” She also tells me she is accomplishing a lot and wants me to watch her carefully. It seems she does this to let me know that there is a purpose to what she is doing. I was feeling a little impatient, but I successfully avoided her recognizing it. She went through three hand towels and four wash clothes before she was finished.

She was very talkative going to, during, and returning home from lunch yesterday. That was almost an hour and a half. This was very different from her normal behavior. The entire time I was fascinated by how much she talked and the content of her conversation.

It started when she used a word that I can’t remember right now and said, “I bet you didn’t think I even knew that.” I said, “I’m not surprised. I know you’re smart.” She said, “Yes, guys don’t think girls are smart, but they are. They’re just as smart as boys, some of them even smarter.”

She continued this line of thinking after we got to the restaurant, but the nature of the topic drifted away from the key theme. A good bit of the time I had trouble understanding what she was trying to tell me. It was as though she had taken some kind of drug that made her talkative, and she rambled from one thing to another. The common thread was her focus on the lives of boys and girls during their teenage years. She talked about the “prim and proper” girls who sought the attention of the boys by wearing the right clothes, staying slim, and worrying about their hair. My participation was that of facilitator. I asked a lot of questions for clarification and simply listened as she went from one thing to another. Understanding her was complicated somewhat by her shrinking vocabulary. She uses the word “thingies” a lot when she can’t think of the precise word she wants.

She talked so much that she ate more slowly than usual. We were running late to get home for the sitter. I sent her a text and told her to wait for us, and we would be home shortly. It was quite a conversation. Like so many things, I will never know what brought it on.

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Happy Moments

As our lives continue to change, I want to make the point that our good times are not over. We continue to have our Happy Moments. Here are a couple from the past two days.

Thursday night we went to Casa Bella for Broadway night. Following several recent nights that didn’t go as well as they had in the past, I was a bit apprehensive as we prepared for the evening. I needn’t have been concerned. We had as enjoyable a night as we have ever had. The primary reason was the musical program itself. It featured music from three Rodgers and Hammerstein musicals, Oklahoma, Carousel, and South Pacific. Given the age of the audience, everyone was familiar with all the songs. Kate was engaged from the first note to the last.

In addition to the music, the social interaction around the table was much less intimidating for Kate than the other evenings that hadn’t gone so well. It was a table of eight, but all the couples were seated side by side. The conversation broke down naturally between the four at one end of the table and the four at the other end. Kate didn’t participate much in the conversation, but she seemed to feel a part of the group. The experience reinforced my belief that smaller groups are much easier for her than large ones. I was pleased with the way the evening went and hope that we will have similar experiences in the future.

Another Happy Moment occurred yesterday morning when she got up to go to the bathroom. It was one of those that can easily be taken as a sad moment, but my focus is on the happy side. As we returned to the bed, Kate said, “Where are we?” When I told her, she gave me a look of surprise and said, “How wonderful.” She lay down on the bed with a great sigh of relief. I don’t know where she thought she might have been. She probably had no idea, but knowing she was home must have given her a feeling of security. I felt good because she is normally doubtful when I tell her we are in our own home. We talked a few minutes about our home and the good times we have had here. When I left the room, I was happy knowing that she was happy.

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More Examples of Kate’s Expression of Emotion

One of the ways I have adapted to Kate’s changes is to avoid things that might lead to negative emotions. That is not always easy. For example, I have no control over sudden loud noises like those we encounter in restaurants or any other public settings. One of the things over which I can have a degree of control is avoiding topics that cause her to be sad. I try not to mention mass shootings or other terrorist activities or natural disasters. She is unusually sensitive to them these days.

There is no way, however, that I can protect her from everything. Yesterday I had a routine appointment with my doctor. It had been more than six months since I had seen him. I knew that he had had open heart surgery since my last appointment and planned to ask him about it. As you might imagine, it was a big event in his life. He was ready to tell the whole story.

As he began, Kate was touched. She had tears in her eyes and whimpered audibly while he talked. As he neared the end, I said, “I suspect you came away with a very different perspective on life.” He said he did and began to tell us how he was looking at life now. As he did, Kate entered the conversation herself and agreed with his thoughts about taking advantage of every moment in a way he had never done before. She didn’t do or say anything that was bizarre, but she was moved in a more dramatic way than one would expect in the situation.

As we were driving home, she had another emotional experience. This one was more surprising to me. We went through a heavy rain when she started a conversation that I didn’t initially understand. It was about the danger of storms. She couldn’t find the word she wanted. We played a guessing game for a minute or two before I guessed the word “pets.” She was concerned about dogs and cats that might be caught in the rain. We were less than ten minutes from home, and she talked about the need for pet owners to see that their pets were inside at times like this. Her concern went beyond what I would call normal. She was quite worried about them. When we walked into our house, she said, “Let’s check on the dogs.” I explained that we lost our dogs six years ago. Immediately, I was worried about causing an even greater emotion, but she just said, “Oh.”

Another minor incident happened when I tried to help her with something she wanted to do it herself. I don’t even remember what it was, but she snapped at me. I said, “I’m sorry. I did it again. I was trying to be helpful but went too far.” Then she apologized to me and was very sad. She started to cry. I gave her a hug and reassured her that she hadn’t done anything wrong.

She is very sensitive right now, and I hate for her to feel sad or guilty. Fortunately, these emotions have been short-lived.

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Kate doesn’t always remember I’m her husband, but she still feels secure with me.

It is impossible for me to know how much of the time Kate remembers that I am her husband. I used to be able to identify specific moments when she didn’t. For a while I noticed these moments were longer in duration. More recently, she has brief moments when she knows and doesn’t know. She used to ask my name and our relationship a lot. Sometimes she still does that, but she asks much less frequently than before. She seems to be adapting to not knowing.

What I consider of greatest importance is that she continues to recognize me as someone with whom she is familiar and trusts. Even in those moments when I know she doesn’t remember I’m her husband, she is very comfortable with my helping her with toileting, showering, and dressing. Increasingly, she has become more comfortable just having me around. That has been obvious in her reactions to my returning home after the sitter has been here. In those cases, she has been very relieved when I walked in.

This emotional dependence is also evident in lots of little things that occur on a daily basis. For example, yesterday I had a United Way committee meeting during the lunch hour. Our sitter was scheduled to arrive at 1:00, and I needed to leave the house about 11:30. I asked a church friend, Martha, if she would take Kate to lunch and get her back home for the sitter. Kate has known and liked her for a long time. They used to eat lunch together regularly when Kate was the church librarian and Martha was an assistant to one of the pastors.

It had been at least six months since they had seen each other, and Kate didn’t remember her but had retained a good feeling for her. When Martha arrived, Kate greeted her as naturally as I had hoped. I knew everything would be all right, and it was. Although I had told Kate she would be going to lunch with Martha while I went to my meeting, Kate assumed that I was going to lunch with them. When she discovered I wasn’t, she had a sad look on her face and said, “You’re not going with us?” I told her I was going to a meeting. She said, “I’m going to miss you.” I told her I would miss her too, but I knew that she and Martha would have a good time together. As she got in the car, she said, “I’m almost embarrassed to say it, but I’m going to miss you.”

As I said, this is a little thing, but I took special note of it because she seemed so comfortable with Martha. I hadn’t expected her to be concerned that I wasn’t going with them. I am sure their lunch went well. I haven’t talked with Martha, but I will.

At dinner last night, Kate asked my name. Then she tried to ask our relationship, but she couldn’t figure out how to say it. I said, “ Do you mean ‘How are we related?’” She said yes, and I told her we were married. She said, “No.” I said, “What about being good friends?” She didn’t like that and suggested that we might be like cousins. Then she said, “But that wouldn’t be true.” Then I suggested that she think of me as a helper. At first, she liked that. Then she changed her mind. About that time our food arrived, and we never finished the conversation.

After we were home, I had the impression that she still did not think of us as a married couple. Then our son called. We had a nice conversation with him. Our granddaughter had begun her freshman year at TCU on Monday, and he updated us on how the move had gone. During that conversation, it must have been clear that we are married. She didn’t express any concern or doubts about our relationship the rest of the evening.

It strikes me that she must be experiencing this kind of shift from knowing and not knowing other things as well. That would include other people, our house, and where we are. There were times yesterday that she thought our house was someone else’s house. She has never said anything that suggests she perceives these shifts as strange. What I do recognize are those moments when she doesn’t seem to know anything. That is when her anxiety attacks occur.

This very morning brought another illustration of her dependence on me as a source of security. She had gotten up early to go to the bathroom and gone back to bed. About forty-five minutes later, I heard her call for me. When I reached her, I asked if I could help her. She said, “I don’t know.” In the past, this is what she has said when she was have an anxiety attack. The difference this time is that she didn’t seem to be frightened or unnerved as she has before. I asked her if she would like to bring my things to the bedroom and stay with her. She said she did, and thanked me when I returned. Then she asked my name. I told her. Over the next thirty minutes, she asked the same question again. She didn’t ask, but I got the impression that she didn’t remember our relationship. She did, however, tell me she was glad I was with her. In this case, I wasn’t doing anything but sitting next to her in my chair as she tried to go back to sleep. It took quite a while before she was asleep, but she was relaxed.

In the past few days, I have also noticed an increased desire to hold my hand while we are out. She has said, “I want to make sure I don’t lose you.”

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A Couple of Unpleasant Moments, But a Good Day

Yesterday was a beautiful example of our mixture of good and bad moments. We got off to a good start when Kate woke up before 8:00 to go to the bathroom. She was confused, but she seemed to be in a good mood. Several times she asked where she was and why she was there. When I got her back in bed, I told her I would be in the kitchen if she needed me. She looked frightened and said, “Don’t leave me.” I got my laptop and brought it back to the bedroom where I stayed for about an hour. She was awake a good bit of that time and periodically talked about how glad she was that I was with her. Finally, she fell asleep, and I went back to the kitchen.

A little over an hour passed. I decided it was time to get her ready for the day. I had an 11:30 appointment for my labs before seeing my doctor for a checkup on tomorrow. She got up easily. Then she took a shower and got dressed.

She was fine the rest of the day. After our short visit to the doctor’s office, we went to lunch. She was talkative. We both enjoyed ourselves. We returned to the house for an hour before going for our hair appointments at 3:00. After that, we spent another hour at home before leaving for dinner.

During that time, Kate spent a while going through a book of “word searches” that I had bought for her about six months ago. She has never been able understand the concept that you look at the rows and columns of letters and try to find the words that match the topic for a particular one (Bugs or Islands or Weather, etc.). Yesterday she enjoyed looking through it and created her own explanation of what it was about. I didn’t understand it, but she thought it was something that we could give to trick or treaters at Halloween. I didn’t try to get her to explain. I knew that would be impossible. I was just glad that she found pleasure in looking through it.

After dinner, she worked on her iPad for a longer period of time. She was so engrossed that when I suggested we go back to the bedroom and get ready for bed, she didn’t move. I told her I was going to take my shower and encouraged her to come to the bedroom. She reluctantly agreed.

I put on a YouTube video of an Andre Rieu concert earlier this year while I showered. When I got out she was still working on her iPad. Everything was going smoothly. When I got out of the shower I told her it was getting time for bed. I put the night gown out for her. I try to give her a chance to do this by herself. She prefers this, but often runs into a problem. That was true last night. She asked me to help. That went smoothly, but in the process of getting her to the bathroom, brushing her teeth, and taking her nightly meds, I rushed her. She was angry. That is not something that I am accustomed to seeing. She said, “You just want to control everything I do.”

I realized I had stepped over the line and apologized to her. I told her I really wanted to help her but realized that I can go too far. She began to cry and apologized to me. The crisis was over in just a minute or two, but it made a big impression on me. This was not like anything we have experienced before. Neither one of us likes conflict, and we both work to avoid it.

With that behind us, I helped her into bed and went over to the chair on my side of the bed. I put on some music and was prepared to read for a while as I usually do after she is in bed. This time she wanted me to come to bed with her. I turned off the light and joined her. She said she felt better if I was with her. We didn’t talk much. She began to relax, and we both went to sleep.

As I do so often, I wonder what is going on inside her brain. I recognize that it is possible to calm her. Playing music, being with her, and talking slowly helps her relax. I know that when I rush her, I am asking for trouble. She also has times when she is anxious or afraid. I think the fact that so much of what we do keeps her focused on enjoying the moment that she doesn’t normally feel  anxious. When she first wakes up in the morning, the memory of all the good things we did the day before are gone. She doesn’t know anything. I think I can understand that. I would probably be anxious myself. I also know that I don’t like to be rushed and work hard to avoid it. She is unable to take the steps to avoid being rushed. It takes an external source to do that. I am it, but I have to be very careful to get her ready without her feeling rushed. That is harder now than it has been in the past.

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Lots of Little Things

It seems like each day is a little different now. Kate is much more emotional, dependent, and confused. The combination is making a difference in how much time I devote to tending to her needs. This morning was a good example.

After I was dressed and about to begin my daily morning routine, she wanted to go to the bathroom. I took her and got her back in bed. She seemed especially needy and held my hand going and coming. Several times she thanked me for helping her. As usual, she was confused about where she was. I explained that we were at home, but it didn’t sink in until she looked out the window at the back yard.

Once she was in bed, I told her I would be in the kitchen if she needed me. She didn’t want me to leave her. I asked if she would like me to get my laptop and sit in the chair beside the bed. She was relieved that I would do that. This is the time of morning that I get my breakfast, check the news, get in a little exercise by walking around the house listening to a book, and then tending to my blog. It’s not great problem to make the change in plans, but it is a good example of what is occurring more often than in the past.

Yesterday morning was a different kind of experience. I let her sleep until 11:00. Then I got her up to be ready for the sitter who was taking her to lunch at noon. As we were leaving the bathroom to get dressed, she got a sad look on her face and said, “Just think of all the people who have to go through all this (not sure what this meant) and don’t have all the things we have.” It is not unusual for her to express her feelings about people who are less fortunate than we are, but this was a much stronger expression of those same feelings. She began to cry. I tried to comfort her as I helped her get dressed. Then as we walked to the family room, I saw one of her family photo books and decided to divert her attention to it.

That worked well. She then focused on her family. The tears, however, didn’t stop, but they were now tears of joy. The sitter’s arrival distracted her again. The tears stopped. I told her I would be going to Rotary. She didn’t want me to leave. When I told her that Cindy would take her to lunch and that I would be back later, she was fine.

Kate has continues to pull her hair whenever she lies down. She often talks to me about how much she is accomplishing by doing this. For the first time, she explained that she was “getting all the thingies out.” I asked if she thought they were alive. She said, “I guess.” This is similar to her feeling that she has “bugs” in her teeth and on her body, especially between her toes.

As I have said before, life is different now.