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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.

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Hallucinations and Delusions

Hallucinations and delusions are common among people with dementia. Kate is no exception, but I often find it difficult to distinguish between the two. I know that hallucinations are sensual experiences that feel real but are not. Delusions are false beliefs that occur when there is no evidence that they are correct.

Applying those general definitions to specific incidents is not always easy. For example, Kate often believes she is some other place when she is home. Most frequently, that involves her believing our house is some type of lodging like a hotel and that there are other people staying here. When she wakes up, she often says, “I want to get out of here.” I think of this as a delusion because it is a false belief. On the other hand, that must occur because she has had a sensual experience that she doesn’t recognize as our own house. When I point out a few things like our backyard (that is, giving her evidence that is to demonstrate it is our house), she realizes she is really at home. That sounds more like it was an hallucination.

As I was about to get out of bed yesterday morning, she asked, “What do I have to do today?” I told her it was a day without any special obligations, that she could relax and do what she wanted to do. Then she said something about having to give a talk someplace. I told her I didn’t know about anything like that and suggested she may have had a dream. She reacted quickly and strongly saying, “It was not a dream.” I didn’t pursue it further. After I was dressed and about to go to the kitchen for breakfast, she brought up the subject again. This time I knew what not to say. Again, I told her it was a day when she could relax. When she asked about her “talk,” I said, “I think that’s tomorrow. You don’t have to worry about it right now.” She was relieved.

Most of her hallucinations/delusions are like those I just mentioned; however, this past Tuesday afternoon she (and I) had an experience that was a first. She had been resting on the sofa of our family room for about two hours while I was seated across from her. She fell asleep for a short time. Then she awoke and saw me. She had a big smile on her face and greeted me like someone she knew, but not as her husband. She began a conversation that made me think she was not really awake but dreaming.

I went over and sat beside her. She said, “Are you from around here?” I told her I was. Then she said, “Well, how familiar are you with what is going on?” I told her I wasn’t familiar at all. She said, “Oh, then I better start from the beginning and tell you about myself.” That led to a thirty-minute conversation during which she did most of the talking. Her aphasia was quite evident. She struggled for just the right words and how to tell her story most clearly. She would start out and then get confused. Then she would start over. I recorded a short portion that occurred about fifteen minutes after our conversation began. I transcribed the section below as she tried to explain “things” to me.

Kate: What is interesting to me is how quickly we can get in and out here. <pause, reaching for the words> Yeah, I can’t just get over with what you can do with <pause, reaching for the words> uh, with, well, you know with what. (She laughed.)

Richard: Well, you seem very happy. You don’t seem like you have a problem.

Kate:  I don’t have a real problem, but I do get discouraged sometimes. Just because. Let me see. <pause, reaching for the words> All right. <pause, reaching for the words>

Richard: You get discouraged? For what?

Kate: Oh . . . Oh. <pause, reaching for the words> just little things, you know. and the big things I take pretty well. And, uh, there’s a guy that I had never met before, but he’s a nice guy. Are you familiar with around here?

Richard: A little bit.

Kate: Well, OK. Um. I’m from Fort Worth, Texas, and um. <pause> And my family was religious, and uh, but anyway, I, I, uh grew up in the church. So <pause>, reaching for the words> But, ya’ know, all of these things have changed.

Richard: In what way?

Kate: (She laughed and called me for help.) Richard. <pause> Richard! <pause> Richard!! <longer pause> Richard!!!

Richard: Who are you looking for?

Kate: That’s my . . . <pause>

Richard: Who is that? <no response> You were about to say?

Kate: He’s with us.

Richard: Richard?

Kate: With this church.

Richard: Richard is with the church?

Kate: Who?

Richard: You’re saying somebody is with the church.

Kate: Oh, yeah.

Richard: Who is that?

Kate: Oh, a lot. <pause> (She laughed.) We do. This is a little hard for get around here, but, uh. Anyway, let me start with me. I grew up in this right <pause> this big area.

Richard: You grew up around here.

Kate: And, uh . . . (She laughed). There were in the area in which all my friends grew up with we all went to school. You know some get out way . . .

I think that should give you an idea of the conversation. She called for me again, and I told her I would go get “him.” When I walked back into the room, I greeted her as though I had not been in the room with her moments before, but I didn’t give her my name or tell her I am her husband. She seemed to recognize me, and I suggested we go to dinner.

I’m not clear on whether she was having an hallucination or a delusion or both. Maybe it’s best just to say she was confused. That is clear, but what prompted it? That’s another thing I’ll never know.

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A Social Occasion That Went Very Well

Yesterday, as we were about to leave for lunch, I received a call from our pastor asking if we had lunch plans. Despite the fact that we were going straight from the restaurant to a hair appointment for Kate and then drive to Nashville, I invited him to join us. That is probably a good indication of how important social contact is for us. Otherwise, I would have told him we were on a tight schedule and arrange another time. I made the right decision.

Not surprisingly, Kate did not remember him when I told her he was coming. She took it nonchalantly with no expression of excitement or reluctance. We had already taken our seats before he arrived. When he saw us, he walked over and greeted Kate. She called him by the wrong name. He gave her his correct name and said, “That’s all right. I get called lots of things. You can call me whatever you want.” That began a beautiful conversation that went on for over an hour before we had to leave.

Kate was in one of her talkative moods, and our pastor is a good facilitator. She was immediately very comfortable. In fact, she was “unleashed.” Early on I mentioned something about his being our pastor. She was surprised. She looked at him and said, “You are? I didn’t know that.” That was one of many things she said that were clear signs of her Alzheimer’s. She had to ask lots of questions to understand what he and I said. Many of them involved the definition of words that we used. Her aphasia is definitely becoming more pronounced.

There were two things I especially liked about our time together. One is that she was on equal footing with the two of us in the conversation. In fact, she may have talked more than either of us. Another is that she conveyed so well what she is like as a person as well as a person with Alzheimer’s. I don’t recall our ever having been in a social situation where she has been this way before. I attribute that heavily to our pastor. She was very comfortable with him and even said so. I don’t recall her words at all, but she took two or three minutes to comment on his ability to put people at ease.

The conversation illustrated her heightened emotional state. Our pastor said something very early about some of the mass shootings that have occurred around the country. Kate was very sad and in tears. When the conversation drifted to our relationship, she noted that we are a team and work together well. She wanted to convey how fortunate we have been and couldn’t think of the word she wanted. Our pastor said, “Blessed?” She said, “Yes, we’re blessed.” That led her to say, “I wish everyone could have what we have.” She was in tears again.

We also talked about several members we thought had made special contributions to our church. The pastor looked directly at Kate and said, “And you are one of those people.” He went on to talk about her nineteen years of volunteer service as the church librarian. That brought more tears.

When we got to the car, the first words that Kate spoke were, “I feel happy.” I said, “I do too.” It was a beautiful experience in which she got to be a significant part of the conversation, and, amidst the stumbles she made because of her Alzheimer’s, she was able to convey the depth of her insight even now. It was a very special time for me. It was another “Happy Moment” for us.

It was a good example of Kate’s intuitive abilities. Although our conversation included factual information that she didn’t fully understand, we talked largely about our feelings about our lives as well as the people and world around us. That is something she can still understand. She was quite open about her feelings. She even responded negatively to our pastor when he tried to pay her a compliment. I don’t remember what he said, but she thought he was criticizing me. She quickly responded and said, “Don’t you say that about him.”

It was also an illustration of the way someone can put her at ease. She connected quickly with him. I had seated her so that he and Kate were directly across from each other. I think that helped. The key factor, however, was the way he related to her. From the outset, he made her feel she was an equal partner in the conversation. She knew he was listening to her.

I think most people are a bit unsure about how they can best relate to someone with dementia. The easiest thing is to hold back. I was reminded of two other successful encounters we have had with Twitter friends of mine. When I introduced Kate to them, they immediately gave their attention to her. That made Kate comfortable and led to a very good conversations. It strikes me that this is a good way to begin with anyone we meet, not just someone with dementia.

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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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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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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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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.

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I can’t prevent attacks of anxiety, but they don’t last.

When I went to the bedroom to wake Kate yesterday, I found that she was having another anxiety attack. She was frightened and looking around the room for something that seemed familiar. I recognized the problem without her saying anything. I said, “I’m sorry I didn’t know you were already awake. I’d like to help you if I can.” She said, “Where is my maybee?” I told her I didn’t understand. She realized she wasn’t using the right word and tried again. Then she said, “My mother.” I said, “I can tell you about your mother.” She said, “Do I have a mother? I want my mother.”

We talked a few minutes about her mother. Then she wanted to know where her clothes were. I brought her clothes to her and told her I would help her dress. I suggested that she first go to the bathroom. As we walked to the bathroom, she asked again about her clothes and said, “I see other people, and they all have clothes on. I want my clothes.” I said, “You are right. You’ll want your clothes when we go outside.” She said, “See. I’m smart.”

This was one of the many times I wish that I had recorded or could remember exactly what she said. I can only try to capture the sense of what happened. It is not unusual for her to tell me she is smart. Although sometimes she makes it clear that she wants me to understand that, I believe she is also telling herself that she is smart even though she recognizes her problems. In this particular conversation she commented on understanding a word I had used and also one that she had used herself. I don’t recall either one, but she said, “See, I remembered that.” She was also proud that she put her top on the right way.

When she was dressed, I told her I wanted to take her to lunch. She said, “I want to go home.” She says this occasionally when she wakes in the morning. I usually tell her she is at home, and she accepts that. Sometimes she doesn’t believe me, and I try to redirect her attention to something else. In this case, I told her I would take her home, but I wanted to show her something before we left.

Then I went through the same routine I had done the day before with photos of her family. Once again, she noticed Pepper, the ceramic cat, as well as the flowers on the patio. She asked if we could walk outside to get a better look. We took a few minutes to do that and then left for lunch. She no longer showed any signs of anxiety. She didn’t, however, know who I was. When she was dressing, she asked if I were her daddy. I told her I wasn’t and that I was her husband. She didn’t believe that. I said, “Let’s just say I’m a friend.” She liked that better.

On the way to lunch, I played an album of music by a group that had played the Four Seasons in Jersey Boys. She enjoyed the music and clapped her hands on her legs and also moved her hands around the way she might have done if she were dancing. She had a good time.

She was talkative at lunch. It wasn’t long before we began to talk about our relationship. She specifically said something about our being married. The rest of the lunch and the day went very well. She showed no anxiety or doubt about me and our relationship. I will say, however, she often slips back and forth between knowing our relationship and not. I don’t quiz her all the time to know when she knows and doesn’t know. I almost always make a judgment based on the way she relates to me. During the afternoon and evening, it seemed like she did know me as her husband. Once again, we had moved from a moment of anxiety to feeling at ease. This reinforces my belief that she just needs to be exposed to things with which she has been familiar. Then the anxiety disappears.