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Patterns in Kate’s Behavior

I am always looking for patterns in Kate’s behavior. Sometimes that is difficult. For example, the time she gets up in the morning has been somewhat erratic since the spring. There is a general pattern, however. She clearly gets up later on average than she used to do. The fact that we rarely get to Panera in the morning is the best indicator of that.

I have tried to detect patterns in her confusion as well. That has been harder than her sleeping pattern. In general, I would say that she is more confused in the morning than later in the day. That makes sense to me because she has always been slow to get up. She has never been interested in conversation in the morning. It was like she needed time to pull herself together. Then she would be able to think more clearly. I admit that I really don’t know what was going on. I just know that she tended to be quiet. After a little time, she was “more like her normal self.” This makes me wonder what she thought of me all those years since I can be ready for conversation immediately after getting up.

Yesterday was a good example of how, given a little time, she can change. As I reported in my previous post, she was very confused when she awoke. It was as if her mind were blank. She was quiet through lunch. She didn’t even ask my name or her name or where we were on the way to or during lunch. That is unusual. We came back to the house where I put on some Christmas music, and we relaxed in the family room. By the time we left for our haircuts, she seemed alert and happy.

Yesterday was a day for her to have her hair colored. I waited while the woman who does our hair started the process with Kate. During the time that the color was setting, I got my haircut. I was seated in the chair next to Kate. At one point, the stylist (I always feel a bit awkward when I use this term. I still think it should be a barber who cuts a man’s hair. It must be a sign of my generation. <g>) stopped and went to Kate to “help” her. Let me explain.

Kate has developed what to me seems a strange habit. This happens most often when she is lying in bed before going to sleep and after her shower in the morning. She gets a few strands of hair at her scalp and runs her fingers along the strands until she gets to the end. Then she gets another few strands and does the same thing. This can go on for a long period of time. This is something I don’t understand. She has tried to explain that she is doing something good for her hair. She is pleased by what she is doing and has asked me to watch. Since this often happens after the lights are out and we are in bed, she says, “I will show you in the morning.” The only thing I can think of is that she might be getting tangles out of her hair. She does the same thing after she gets out of the shower. Her explanation for that is different. She says she is drying her hair. As you might imagine, this is not an efficient way to dry hair. Kate stopped using a hair dryer years ago. I have never used one, so we don’t have one in the house. On our trip to Texas for Thanksgiving I used the hair dryer in the hotel to dry her hair. She seemed to like that. I’ll put that on my shopping list.

That is a long introduction to tell you how the stylist was helping Kate. She had noticed that Kate was gathering strands of hair and doing the same thing she does at home. She was wearing light khaki pants and was getting the dye from her hair to her hands to her pants. There was no harm done. It’s just another illustration of the kinds of things that happen that I would not have anticipated.

After dinner, we came back to the house and watched two specials on TV. That is very unusual for us. The first was a Rick Steves’ special on “Christmas in Europe.” I was very surprised that Kate watched the entire program and without working on her iPad. I can’t remember the last time that happened except for a musical production. We followed that by watching a memorial concert celebrating the lives lost in the shooting at the Pittsburgh synagogue. It was a beautiful concert and a peaceful way for us to close our day. I should add that the time we are at home together after dinner is the most predictable time for us. I look forward to it each evening.

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A Confusing Start

Just when I am getting myself accustomed to Kate’s sleeping later, she got up very early this morning. I walked into the family room about 7:25. Kate was walking into the family room from our bedroom. She was carrying one of my dress shirts on a hanger. I knew immediately that she was looking for her clothes that I had not yet put out. When I got close to her, she said, “Who are you?” This began one of those conversations that I have reported on before. “Who am I?” “Who is my mother?” “Who is my father?”

This one was a little different from some of the others in a couple of ways. What I recognized after a few minutes was that she had no idea who she is, who I am, or where she is. This is the way she has been when she has had her anxiety attacks. What was different was that she didn’t display the same kind or degree of anxiety. She was quite calm. She was just very puzzled.

In addition, her memory was even shorter than usual. It was more difficult for her to repeat the names (hers, mine, her parents, our children, and her brother) I gave her when she asked. She was surprised when I told her I’m her husband. I asked her to sit with me on the love seat, and I picked up her “Big Sister” photo album that Ken had made for her. I opened it to several wedding pictures. She usually recognizes people after I have told her their names. That didn’t happen this morning. She was puzzled and couldn’t understand how she could not remember that we were married and that we have children.

After fifteen or twenty minutes, it was clear to me that she wasn’t able to process any of what I was telling her. I felt that I was giving her too much information even though she was asking for it. I asked if she would like to take a shower. She did. I took her to the bathroom and turned on the shower for her.

I came back to the bedroom just after she got out of the shower. I pointed out her clothes. She wasn’t ready to get dressed. She asked, “Who are you?” She was still surprised and said, “But you’re a nice guy.” It sounded to me that she hadn’t fully accepted that I am her husband, but I was all right anyway. In a few minutes, she asked if she could get in bed. I told her she could. I extended my hand to help her get out of the chair. She told me she could do it. Then she changed her mind quickly as she started to get up. She took my hand and walked to the other side of the bed. I helped her into bed and pulled the sheet over her. She again asked who I am. As she had done previously, she said, “You’re a nice guy.” It is 10:03 right now. I am sitting in a chair beside the bed. She is sound asleep. I wonder if she will still be confused when she wakes up.

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It began with a scream and ended with music.

About 4:30 yesterday morning, I was awakened with a loud scream. Kate had a bad dream. She was unable to tell me about it but was very frightened. This was a time to comfort her. I held her and told her she was all right, that she was safe and that I would take care of her. She calmed down and dosed off within fifteen minutes.

This was not the first time she has had a bad dream. Fortunately, they don’t happen often. Most of the dreams I have been aware of have been good ones. Until the past couple of years, she would talk while dreaming. They were always in a situation in which she was teaching children. I could easily see this as an outgrowth of her years as a school teacher and librarian/media specialist.

I stayed in bed until 5:10. I decided to let Kate sleep. She had responded so well to Valorie’s getting her up, showered and dressed last week that I felt comfortable letting her take care of her again. Before leaving, I told Kate I was going and that Valorie would take care of things. She seemed perfectly comfortable with that, and I left feeling good.

When I returned later in the afternoon, Valorie and Kate were in the family room having a serious conversation. They were talking about students and teaching. At least Kate was. Valorie appeared to be listening. I was pleased to see they were getting along well. They were talking as two friends might do. I am still surprised, but glad, that Kate is willing to let her help with her shower and getting dressed.

We ended the day with an annual Christmas dinner with music at Casa Bella. It was a wonderful evening. The meal was outstanding, and the conversation lively although it was hard for Kate to keep up. She couldn’t hear or understand much of what was being said. She frequently asked me to tell her what people had said. As I have been doing lately, I cut her meat (a very tender beef tenderloin) for her. That is something new within the past couple of weeks.

This was another bitter sweet occasion for me. I can’t predict the future, but I know that next Christmas will be very different from this one. I am glad that it went well. Kate and I both loved the music, and we ended the evening singing Christmas carols. We don’t know most of the sixty or guests who were there, but we are accustomed to seeing them for these musical nights throughout the year. It was a beautiful shared experience for everyone.

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A Short Day

Kate and I got to bed late night before last. As a result, yesterday was a very short day. It was almost 1:00 before she got out of bed. She didn’t want to shower, so we were able to leave for lunch close to 2:00. I was afraid we might be looking at 2:30 or 3:00. As it was, we didn’t get back home until 3:30. I wasn’t surprised that she was tired. She took a nap in the family room while I checked email and watched a little football.

We ate so late that I didn’t feel like eating much. We went to a nearby Mediterranean restaurant where I got a bowl of soup, and Kate had salmon over basmati rice. Her meal came with a salad that I ate. That leads me to make a comment about two changes in Kate’s eating habits since her diagnosis.

The first is that she was known for her salads and desserts. Her mother was an outstanding cook, and Kate took after her until Alzheimer’s entered the picture. When our children were little, she was especially careful to prepare nutritional meals and snacks. As children Jesse and Kevin enjoyed her homemade yogurt, granola, bread, and whole wheat pizza crusts. She even made yogurt popsicles with orange juice for their snacks.

After the children left for college, she and I started eating out more often. That was the beginning of a lessening of her interest in cooking. One of the things she kept up with was making very good salads. Since Alzheimer’s and her shift away from salads, I have missed those. She is now a “meat and potatoes” eater. I have learned to order her “Bacon Turkey Bravo” sandwich at Panera without bacon (too hard for her) and lettuce. I sometimes ask that they omit the tomatoes as well since she often doesn’t eat them. When we split meals at restaurants, servers often ask if we want them to split the salad or bring an extra salad. I always tell them to bring just one salad and give that one to me.

My explanation for this change is that she has been guided for years by what she thought was nutritionally appropriate. With Alzheimer’s she eats the things she likes without regard to any dietary or nutritional concerns. This is not unusual for people with dementia. For a long time broccoli was one vegetable she would eat, but that is just about gone now. It is not just taste that is relevant. She frowns at the mention of certain vegetable options at restaurants. I recently mentioned our having squash soup at two different restaurants. She didn’t like the idea. I got her to taste mine, and she liked it.

One of the big surprises has been a change in her taste for Dr. Pepper, her favorite beverage after iced tea. Now she frequently comments that there is something wrong with it. When she asks me to taste it, it seems fine to me. I have taken advantage of this by often ordering tea for her just to avoid the calories. I still keep Dr. Pepper (8 oz. cans) at home. She often fails to finish one. That is not unique to Dr. Pepper. When she was drinking apple juice, she rarely finished one glass.

Another change that has occurred involves her sense of hunger. I know from others that this is very common among people with dementia. It is not uncommon for her to ask, “When are we going to eat?” within an hour or so after a meal. Because she has so little memory, this is understandable; however, she often doesn’t feel too full after a very filling meal. This does not mean that she has lost her ability to feel full while eating. Sometimes she tells me she is full. Other times I can’t be sure whether she is full or didn’t like her meal. I make this point because we had a filling meal at lunch yesterday. She ate a lot of bread, her entrée (minus the spinach), and our eggnog cheesecake. We finished our meal about 3:00. At 5:00, I told her I didn’t feel hungry right then and would like to wait until 6:00 to leave for dinner. She was comfortable doing whatever I wanted but would have been happy to go at 5:00.

Having slept late yesterday morning, did not affect Kate’s bedtime last night. She got in bed around 9:30. She was ready to go to sleep. It was not one of her talkative nights. When I got in bed a little later, she was still awake. I moved over close to her. She said something that made me think this was one of those times, she didn’t recognize me as her husband. Then she pushed me away. She often feels hot after she gets in bed. Most nights I move close to her when I get in the bed. I don’t usually remain that close for long because I get hot, and she gets hotter. (I’m talking body heat now. <g>) This made me ask if she was hot. She said, “Yes. That’s part of it.” I said, “What’s the other part?” She said, “I’m trying to think of how to tell you. Let’s talk about it tomorrow.” That’s quite a note on which to call it a day. I know she won’t remember this when she gets up this morning. I’ll never know what it was she was trying to think of how to tell me. I do know this. Within a few minutes, she moved closer and affectionately put her arm around me.

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Not Everything Goes As Planned

As someone who likes to plan ahead, I may inadvertently convey that everything goes more smoothly for us than it does. Let me assure you that it doesn’t. I plan, but my plans don’t always work out. I am reminded of a cartoon that I saw on our church bulletin board years ago. It said, “God’s response to a five-year plan: Ha. Ha. Ha.” When my plans go awry, it is sometimes not my fault. Other times, it is. As my caregiving responsibilities increase, I notice that it is more the latter. Here are a few examples of the kind of things that I am slipping up on.

As you know, Kate and I go to Casa Bella the first three Thursdays each month. Because we are regulars, we don’t make reservations. We only call if we are not going to be there. The first Thursday in November I slipped up. We were just finishing dinner at another restaurant when I received a call asking if we were still coming. We rushed over and enjoyed the program.

This past Tuesday I was to “attend” a conference call meeting for a committee on which I serve. Although it was on my calendar, I forgot it.

Early last week I received a package with a cardigan sweater that I ordered online. I tried it on to make sure it fit. It did, but I had a little difficulty getting the zipper to work. It took me a couple of tries. It wasn’t until yesterday that I decided to wear it. This time I was unable to zip it at all. Now I need to send it back. In the meantime, I had thrown out the package and accompanying label and instructions should I need to return it. In this case, I didn’t create the problem with zipper, but I normally hold on to packaging and other materials just in case. For some reason, I didn’t follow my normal procedure. It’s not a big deal to correct the problem, but it creates an extra task that I could have easily avoided.

A week ago the father of someone with whom I have worked professionally died. His service was yesterday afternoon. I hadn’t worried about our making it because I had written it on my calendar for 2:30. That should have given me plenty of time to get Kate ready and to have lunch before leaving. Kate has been tired this week. It was just after noon before she got up. This required me to rush her a little more than either of us wanted. She got ready quickly, and we left for lunch right after 1:00.

Knowing that the service was 25 minutes away and that we didn’t have a lot of time to eat, I decided to stop by Panera. When we arrived, it was unusually busy. We couldn’t park as close as we usually do, and it was cold and rainy. Once inside I discovered a long line waiting to order. There were very few seats, so we sat at a community table. Kate is a slow eater. In fact, she does everything more slowly now. It was 1:50 when we left for the church. We arrived with six or seven minutes to spare only to discover that the service was over. It was a short service and started at 2:00, not 2:30 as I had entered on my calendar. That left us with a long 25-minute drive home.

These are all things that anyone could do, but they are not typical for me. I take this as another sign that being a caregiver has an impact in ways we may not perceive or expect. It is easy to become distracted. As we left Panera yesterday, I extended my hand to help Kate step off the curb. As I did, I was carrying an unfinished cup of coffee in my other hand and spilled it on my coat and shirt sleeve. So much for having everything perfectly under control.

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Two Personal Experiences with the Power of Music

When I checked Twitter this morning, I saw a tweet about music and its “profound power, particularly when it comes to memory.” This observation is now commonplace among those who write about dementia and those who live with it. Kate and I have always been drawn to music. Our first date was to a performance of Handel’s Messiah. We have attended many musical events over our marriage. Regular visitors to this blog know that we have binged on music since her diagnosis. I don’t believe, however, that I have ever mentioned two early experiences that Kate and I had that illustrate the impact that music can have on people whose brains have been damaged through stroke and/or dementia.

The first occurred with Kate’s father in the Fall 1989. After experiencing a stroke on Veterans Day, he didn’t speak. Knowing that the stroke had damaged his brain, we wondered what he was able to process. Did he recognize us? Did he understand what we were saying? How was he feeling?

On a Sunday morning not too long after his stroke, we were visiting him along with Kate’s mother who turned on the television to the Sunday morning service at the family’s home church where her father grew up. Not long into the service, a longtime friend and member of the choir sang a solo. We looked over at her father and tears were running down his cheeks. I still choke up when I recount this story. It was a sign to us that although his brain had been damaged, he could still connect with us in some way.

The second story involved Kate’s mother. She, too, had experienced a stroke that affected her speech but not to the same extent. She didn’t speak much and that diminished over time. She hadn’t been able to attend church for at least a year or more. On one of our last visits with her in Fort Worth, Kate asked her mother’s pastor if he could come to the house to serve home communion for her mother.

He came out that Sunday afternoon. We sat around a table on the back porch where he conducted the service. At the end, he said, “The Bible says, ‘And then they sang a hymn.’” Then he led us in “Amazing Grace.” As we sang, we noticed her mother singing as though she did it every day. When we finished, she spoke right up and said, “I think we need something to break the solemnity of this occasion.” She burst into a children’s song. I think it was “This Little Light of Mine.” It was an emotional experience for all of us. Music spoke to her and through her to us. That was the last time I heard her speak or sing so well.

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Nothing Special, But a Nice Day

It’s a cool, rainy morning in Knoxville. Both the neighborhood and the house are very quiet except for some soft piano music playing in the background. I had planned for us to visit our friend Ellen in Nashville today. The weather report changed my mind. It is supposed to rain a good bit and might snow as well. Either way, I’d rather not be on the highway.

I trust that Kate and I will have another good day. We usually do. That was true yesterday. Kate was up surprisingly early (before 9:00). She had gotten up to go to the bathroom and went back to bed. I checked on her at 10:00. She wasn’t asleep but very relaxed and didn’t want to get up.

When I went back about about 10:20, she asked me what she should do. I suggested getting up and taking a shower. She said she didn’t want to take a shower. After she had been to the bathroom, she changed her mind. This was another day she wanted my help to the bathroom, toilet, and shower.

One thing was different yesterday. She knew me as her husband. She may have asked my name one or two times, but she knew we are married and mentioned things during the day that made that clear.

We were able to leave for lunch by 11:30. That made it easy to return home for the sitter at 1:00. Before she arrived, I pulled up a series of YouTube videos with Christmas music. The first one I previewed was Handel’s Messiah. I told her that was a special piece of music for us because we attended a performance of Messiah on our first date in 1961. I have mentioned this a number of times during this Christmas season, so I was surprised to see that she responded emotionally. Her eyes immediately filled with tears.

I left Kate and the sitter with the videos running. When I returned four hours later, they were still watching. Kate said, “You should have been here for the beautiful music.” Mary said that Kate had rested part of the time and may have actually fallen asleep for a little while. She couldn’t be sure.

We relaxed at home for another thirty minutes before going out for our Friday night pizza. We came back home where I watched the evening news while Kate worked on her iPad. Following the news, we watched a portion of Messiah broadcast by the BBC. It was a good way to end the day.

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A Case of Caregiver Error

I feel like I do a good job caring for Kate, but like everyone, I make mistakes along the way. That happened yesterday. In an earlier post I mentioned that I was going to my doctor’s office for my labs prior to an appointment next week. I knew I needed to allow sufficient time to get Kate ready without rushing her. Since she had gone to bed at 7:30 the night before, I hoped it would be easy to get her up. I was wrong about that. The big problem, however, is that I was writing a post yesterday morning and let time get away from me. I looked up and saw that it was almost 9:30, and we needed to leave shortly after 10:00 in order to be on time. I went to the bedroom. Kate was sleeping soundly. I tried to be very careful in waking her. I didn’t want her to feel rushed. I sat down on the bed and put my and on her shoulder. When she looked up at me, I told her I was sorry to wake her and explained why I was doing it anyway. She didn’t say much and made no effort to get up. When it was just before 10:00, I told her I really needed her to get up, so she did.

The problem then was that she had a mild panic attack. It has been a long time since this has happened. This reminded me of why I work so hard to avoid rushing. I think the problem is that she wants to please me. When she has to rush, she can’t think clearly at all and panics. In this case, she appealed to me for help. She wanted my help getting her out of bed. She held my hand all the way to the bathroom. She wanted to shower but didn’t know what to do. I helped her and then walked her back to the bedroom to dress.

We were ready to go by 10:30. It had only been an hour since I first tried to wake her. That was a record, but it came at her expense. I felt bad about it. She was calm when we left the house. I apologized to her on the way to the doctor. By then, she had forgotten everything. She tried to make me feel better. She said I hadn’t rushed her at all. She was just fine. I appreciated that. I still felt bad because I could have avoided the whole thing.

The rest of the day went well. The Bluefish Grill is located near the doctor’s office, so we went there for lunch. When we got home, we had about thirty minutes before Kate’s appointment for a massage. After that we spent a couple of hours at home. She was tired and asked if she could take a nap and wanted to know where she should go. I told her I would be in the family room and suggested she join me and rest on the sofa. She rested until it was time for us to leave for opera night at Casa Bella. It was a good night for music and conversation. It was decorated for Christmas, and everyone seemed to be in the Christmas spirit. The crowd was a good bit louder than usual but was respectfully quiet during the program. We both had a good time and went to bed right after returning home. It wasn’t another night of “pillow talk.”

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Another Unusual Conversation

After finishing the previous post, I put up my laptop, turned out the light, and got in bed. I quickly discovered that Kate was awake. It was about 9:45, more than two hours since she had gone to bed. I’m not sure how long she had been awake. I suspect it had only been a short time. It could have been the whole time she had been in bed, but I doubt it. It was clear that she was wide awake. She was very talkative. We (she) must have talked thirty minutes before going to sleep.

She began by telling me what she was doing. She wanted me to feel her cheek. I told her it felt very smooth. Then she explained how she made her skin feel that way. She said, “You just wet your skin.” As she said this, she put saliva on her finger and rubbed it across her forearm. She explained that our skin dries out as we age. We can keep it soft by moisturizing it. I was a bit like a psychotherapist. I didn’t say much except to express facilitative comments. She said she was very interested in this and was going to do more study about it. It is hard for me to remember everything she said. I know she  talked about doctors’ knowing these things from their study but that she had learned it on her own through experience. She wanted to know and understand more. She kept saying, “I am really interested in this.” As she talked, she said “this” a lot. At several points, I didn’t understand what “this” was but didn’t stop her.

She made a gradual shift in the conversation. She started talking about the two of us and our relationship. She never asked my name during the entire time. In fact, she used my name several times. On the other hand, it was clear that she did not recognize me as her husband. It reminded me of our previous conversation in which she said, “I think we are going to make a great team.” She made reference to “the other people.” It appeared that she thought we were part of a group at work.

An interesting sidelight is that we were lying next to each other in bed, a very intimate situation. I have no idea where she thought we were. Certainly not in an office somewhere, but she was very circumspect the entire time. It was a very tender conversation without any passionate expressions of love.

She got into this by saying things like, “I feel very at ease with you. I feel I can tell you anything.” I said, “I feel the same way about you. We have a very special relationship.” I kept trying to steer the conversation in the direction of our love for each other. She didn’t rebuff my efforts, but she talked more about her respect for me and not love. It was only late in the conversation after I said I loved her that she acknowledged that she was beginning to feel the same way about me.

Knowing that I would be unable to remember everything that she said, I reached over to my bedside table and got my phone to record our conversation. I am inserting excerpts from that conversation below.

KATE:            I feel more that way now. (That she could tell me anything.)

RICHARD:    More than you used to?

KATE:            I think so.

RICHARD:   I think that’s because we’ve been together so long.

KATE:            Yeah. That’s right, but anyway, Richard, I think we can work together. Not just the two of us but with all the others.

RICHARD:   Who are the others?

KATE:             Sure.

RICHARD:   I think we’ve had a good relationship.

KATE:            I think we have too. And I imagine that it’ll be getting better. I’m feeling more at ease with you. It’s kinda hard to say, but now I’m probably going to be <pause> I have always been honest with you, but I would probably be more (she stumbled on the word she wanted)

RICHARD:    Revealing?

K                    Thank you. Now I could say this to you and ask you to come with the right word and don’t think anything about it.

 

RICHARD:   Good, I’m glad you feel that comfortable.

K                    I’ve always felt fairly comfortable with you, but I’m feeling much more comfortable now. And I think that’s important.

R                   I do, too.

K                    For you and for him

R                   Wait, for me and for Him? Him Who?

K                    You.

R                   I’m so glad we’ve been together a long time.

K                    Well, it’s long and not.

R                   It doesn’t seem as long as it has.

K                    There have been many short times we have worked together.

R                   Well, we’ve been living together though.

K                    Yeah? Right. (expressing her disbelief with a laugh)

R                   We’ve just lived together 55 years.

K                    (again laughs in disbelief) Huh? Don’t throw that on me.

R                   You don’t believe that?

K                    No.

R                   But you do admit we’ve had a good relationship.

K                    Oh, yes. Absolutely! I think from the beginning, it was just ‘Yes, I think he’s just a guy guy, but it wasn’t anything too overhead.’

R                   Now what is it?

K                    It’s getting kinda overhead.

R                   It’s getting overhead?

K                    Oh, yeah. <pause> Oh, yeah. <pause> Much more respect. Liking to be with you. Being willing to say what I really want to tell you. Well, I’ve aways been honest with you.

R                   You know that I love you, don’t you?

K                    You do? <pause> Well, I think I’m loving you.

R                   You do. That’s good. That makes me feel good. I’ve loved you a long time.

K                    Well, I like to be with you so much, so that’s the same. That’s the same. I feel I can always talk with you, be honest with you. And I’m impressed with so many of the things you are able to do. I respect you.

R                   Thank you, Baby.

K                    Well, I’m telling you the truth. The more I get to know you, the more I respect you and like you. And I think that’s wonderful.

R                   I’m so glad.

K                    This is the most  . . I don’t know how to say it. But we understand each other, and we respect each other.

R                   I think we do.

K                    And those are two important things.

R                   And loving each other is important too.

K                    Oh, yes.

R                   You know, this month on December 19 we celebrate the anniversary of our first date in 1961.

K                    WHAT?? 1961??

R                   1961.

K                    That’s a long way. We’ve always connected. <pause> In different ways now. More real honesty. Revealing ourselves and what we think.

R                   You’re very special to me.

K                    You’ve very special to me.

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A Montage of Surprises, Confusion, and Frustration, But a Good Day

People who know me well understand that I like routine and predictability. For more than six months I have been looking for Kate to get up on a schedule. I would definitely like it to be somewhat early. Around 9:00 would work well for me. Since I get up between 5:30 and 6:00 most mornings, that would give me plenty of time to myself and also allow me to spend time with Kate. For a while it looked like she would sleep as late as 11:30 to 12:30. Within the past two weeks she surprised me by getting up between 9:00 and 10:00. More recently, she has slipped back to sleeping late again. That has made me think she is settling into late pattern rather than an early one. But is she really settling into a pattern at all?

Figuring I had plenty of time this morning, I was slow getting Kate’s clothes ready for her. When I checked on her shortly before 9:00, I found that she was up and looking around for clothes. She was confused and had been going through a closet in a guest room where she keeps her dressiest clothes, the ones she never wears these days. She was glad to see me and wanted my help. I took her to the room that we call “Kate’s room.” We used to call it her office, but she gave up any activity of the kind that she would do in an office. It has the closet where she keeps all her everyday clothes. I grabbed one of the new sweaters I had bought the day before along with a pair of pants and walked her back to our bedroom where she could take a shower in our bath.

Her confusion continued. She wanted me to tell her what she should do for each step. As I was doing this, she said, “Who are you?” I said, “Do you mean ‘What is our relationship or my name?’” She wanted my name. I went back to the kitchen while she showered. When I returned fifteen minutes later, she was in bed. She almost always gets back in bed after her shower. Since she had gotten up earlier than I expected, I decided to let her relax a while.

I returned forty-five minutes later. I assumed she would still be in bed, and she was. When she saw me, she said, “Are you my daddy?” I told her I was her husband. She was surprised but didn’t challenge me. I told her I would like to take her to lunch. She gave her customary response, “Where are my clothes?” I showed her and then helped her put them on.

We ate at the Tupelo Grill for lunch. She wasn’t talkative, but we had a nice time. It was three weeks since we had been there, so we had conversation with our server about our respective Thanksgivings. A little later we had another conversation with her about our Christmas plans.

On the way home I turned on the radio. George W. was beginning his remarks at his father’s service. She listened attentively. When we got home, she wanted to stay in the car to listen to more. I told her I would turn on the TV, and she could watch the rest of the service inside. She liked that and quickly became engaged. She especially liked the music, but she was trying to follow everything. She was still watching when the sitter arrived. I was pleased to see that she gave the sitter a warm welcome before leaving.

When I got home, she and the sitter were seated in front of the TV though Kate was working on her iPad. They had not left the house at all. Apparently, the service and follow up afterwards had held her attention. That was a rare event. I was glad to know that she showed such interest. I am sure she couldn’t follow much of it, but she could sense the emotions of the moment.

After coming home from dinner, she started working on her iPad. Several times she asked for my help. At least one of those times, she had accidentally opened a different app. The others, however, involved her having trouble putting the pieces in place. Once was when she first opened a puzzle. The pieces were scattered across the screen, and she didn’t know what to do. This was not the first time this has happened; however, it always surprises me. Since she works puzzles six to eight hours a day and had just finished a puzzle, it seems like her “autopilot” would take over when a new one is opened. She encountered another problem that also seems surprising. There was only one piece remaining. It was the bottom, left hand corner piece and was clearly visible (to me, at least). She couldn’t figure out how to finish the puzzle. I showed her the piece and then showed her the place where it was to go. A few minutes later, she became frustrated and asked me if she could go to bed. It was just before 7:30. I told her that would be fine and got her night clothes for her and helped her get into them. I am hoping this will make it easy for her to get up in the morning. We will need to leave for my doctor’s office by 10:00.

Tomorrow I have my labs in advance of an appointment next week.