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Growing Confusion

I can’t say that I am observing any new symptoms of Kate’s Alzheimer’s; however, I sense that she is sinking deeper into confusion. The things I report below may sound familiar to you. Just try to imagine that the way she looks and the way she says things suggest something more serious than before.

One of those things is a more consistent failure to realize she is at home. She is routinely ready to take her toothbrush and toothpaste whenever we leave the house. I think she believes we are leaving a hotel. It is becoming commonplace for her to ask where we are when she wakes up.

It also involves an increase in the frequency with which she doesn’t know I am her husband as well as the length of time it takes for her to accept that I am. As we walked from the car to the restaurant for lunch day before yesterday, she said, “Who are you?” I said, “Richard Creighton.” She said, “I know that. Who are you?” I said, “I’m your husband.” She said, “Oh.” There was no other indication of surprise, uneasiness, or enthusiasm. She got the information she wanted and accepted it. While we were eating, she said, “Are you the owner of this place?” I don’t think I have mentioned this before, but she often attributes things to me with which I have no connection. The most common one occurs when we are listening to music in the car. She often says, “Is that you singing?”

At lunch yesterday, she asked my name and then hers. Then she asked, “Who are you?” When I told her, she didn’t believe me. I decided to tell her about our first date and our courtship while I was working at the funeral home. As I recited these experiences she began recognize them. Then I told her we would celebrate our fifty-sixth anniversary next month. I don’t mean to suggest that all her memories came back. It was just enough for her to accept that we are married. Then she asked if we have children.

She is much needier now. She is comfortable with Mary, our sitter; however, when I arrived home that same afternoon, Kate was especially glad to see me. She asked where we were and wanted to get away. She was was relieved when I told her we were at home. I don’t think she feels as comfortable asking Mary where she is.

On the way to dinner that night, she told me she really needs me. She has said this many times before, but it seems different now. Her facial and vocal expressions convey a greater need than the way she used to say it.

The other night after dinner, she wanted to know what to do. This, too, is becoming more common. I told her she could work on puzzles while I watched the news. She did that for almost an hour. Then she got frustrated. I suggested she look at her “Big Sister” photo album. She did for a while but stopped when I put on a DVD of Les Miserables.

Last night as we walked along the sidewalk to Casa Bella, she said something nice that prompted me to remind her that we have been together a long time. She asked how long. I told her almost 56 years since our wedding. She gave me a funny look and said, “Whose wedding?” I repeated that it was ours. She said, “No. You shouldn’t even joke about that.” This time I didn’t try to convince her as I did earlier at lunch.

There are lots of little things that suggest her increasing dependence. One of those is wanting to hold my hand more often than in the past. She frequently says, “I don’t need to, but I feel better.” She also wants my hand to help her in and out of the car and accepts my help buckling her seat belt. During dinner last night, she repeatedly asked me if her iced tea and water was hers. This is not new, but it is more frequent now. She is unsure of what is hers and what is someone else’s. She recognizes that she makes mistakes and doesn’t want to drink one that belongs to another person.

I have been eager to celebrate the many good times we’ve had since Kate’s diagnosis. I’ve also tried to be honest about the problems we have faced. We still have many good moments, but there is no escaping what lies ahead. It saddens me deeply to watch her slowly drift away like this, but I am heartened by hearing from others about precious moments with their loved ones who are farther along on this journey than Kate. In addition, I feel a greater resolve to make the rest of her life as fulfilling as I can.

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A Few Things From Yesterday

Kate woke up at 5:00 and said, “Hey.” I looked over and saw her looking at me. I asked if she needed help. She said, “Where’s the thingy?” I asked if she wanted to go to the bathroom. She did. After she got back in bed, I was wide awake and decided to stay up.

Around 8:30, I noticed on the video cam that she had gotten up. When I reached the bedroom, she was just coming out of the bedroom. She seemed awake. I asked if she was planning to get up for the day. She said she was. I asked if she was going to take a shower. She shook her head to say no. Then she said, “Do you want me to take one?” I told her it would be a good idea, that she had missed one the day before. She said, “Okay.”

After the shower, she went back to bed and slept for an hour before I woke her. She wasn’t eager to get up but did so anyway without lingering or protesting.

I took her to the hair dresser’s at 2:00. I was about to offer her my hand as she stepped onto the walkway but realized there was less than a two-inch elevation from the pavement. I said, “I was going to offer you my hand, but there’s not much of a curb here.” She took my hand and said, “That’s all right. I wouldn’t know where to go without it.”  Afterwards as we walked out, she said, “Take my hand.” I did, and she said, “I don’t really need it, but I feel more secure.”

I see signs of her need for security in other things she is doing. A good example is that she more frequently asks me what she can do when we get home. I guess it is getting harder for her to remember what her options are. That is similar to her waiting to follow me each time we get home. She never remembers where to go. With few exceptions (I can’t remember any.), she always asks me where the bathroom is.

We had about two hours to pass before leaving for dinner. We spent the first hour relaxing in the family room. She started out working on her iPad. After less than thirty minutes, she put it down, closed her eyes, and rested in her chair for another thirty minutes. I told her we had another hour before dinner and asked if she would like to go to Barnes & Noble. She hesitated. It looked like she thought I might want to go. I told her I was fine staying at home. She did as well. This is becoming more common now. For such a long time, she rarely wanted to spend much time at home. Now as she is feeling the need for rest, she is less likely to accept an opportunity to go out. It’s just one more sign of how she and our lives are changing.

We ended the day with dinner at Bonefish Grill where we had a good social experience. We ran into a man who was a very good friend and admirer of my dad. They had both been students in a writing class for several years. They struck up a friendship that lasted until Dad’s passing in 2013. It was an interesting relationship since this friend is just one year older than I am and 26 years younger than my dad.

He was with his significant other who has dementia and just moved to Knoxville from New York City. She has been quite involved with the performing arts and had a neighbor with her who operates a ballet school. The conversation broke down into one between the dancer and me and Kate and our friends. I was glad to see Kate so actively involved in conversation. I don’t know what she said, but at one point she turned to me and asked how long we had been married. Our friends had obviously asked her, and she didn’t know. We both left the restaurant feeling energized. Eating out continues to offer us such experiences.

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Thoughts on Dependence, Appreciation, and Responsibility

Yesterday was another very nice day for Kate and me. It was just one of many. It was also a day when I was a little more mindful of how dependent she is. Like other days in recent months, she looked to me for guidance on things you might not expect. For example, she asked me if she should take a tube of toothpaste and her hair brush with us when we went to Panera yesterday morning. After returning from lunch she asked me where she should go to rest. I told her she could lie down on our bed or the sofa in the family room. She chose the bed.

We don’t normally think about it, but our rational thought processes guide us most of the time during a given day. We remember that we have an appointment at a specific time and understand how much time we have to prepare before leaving. We remember the rooms in our homes and where we sit when we want to relax, and where to lie down when we are tired. When people with dementia lose these abilities, they don’t know what to do next. That is where Kate finds herself much of the time. It’s hard for those of us without dementia to fully understand what this is like.

Thursday is the only day of the week we don’t have a regular place for lunch. Since she was up early, and we had gotten to Panera and had no other commitments until haircuts at 3:00, I took her to a restaurant we’ve visited only a few times. It’s almost a twenty-minute drive, but it’s a nice place and worth it occasionally. We had a very pleasant lunch. Just before we left, she asked me if I thought she should use the restroom before leaving. We decided that was a good idea, and I walked her to it. As I often do, I waited outside the door just in case she needed something. It turned out that was a good thing. When she came out, she had a paper towel in her hand and didn’t know what to do with it. She hadn’t noticed the trash container inside. I took the towel and put it in the trash. Then I noticed a roll of toilet paper on the floor. I picked it up.

As we drove away, she said, “You know, when I’m with you I feel at ease. I know I’ll be all right.” I said, “Do you feel uneasy when I’m not around.” She said, “No, I can handle myself all right. I just feel better when you are with me.” I’ve often heard her say things like “I’m glad you’re driving. I could get home by myself, but it might take me a while.” She recognizes she has a problem with tasks like these, but she also likes to think that she can really take care of herself if she had to. I am glad that is something she can hold on to.

Kate has always been appreciative, but she is becoming more so as her dependence increases. She thanks me for specific things like helping her find the bathroom or getting back to bed. She also thanks me at times when I haven’t done anything. I occasionally read several online message boards for caregivers. I realize that many caregivers don’t receive this kind of gratitude and, because of that, sometimes feel resentful. That’s not an experience I’ve had. That makes caring for Kate easier than it would otherwise be. In fact, her decline and her appreciation act together to give me a greater sense of responsibility and determination to see that her needs are met. Like other caregivers, I am guided by two broad goals – to keep her feeling safe and secure and to keep her happy. Her response to my efforts reinforces that commitment to her.

That reminds me of something else that is true for all successful marriages. Marriage involves two people working together. Kate and I are still partners. Her dependence doesn’t mean I am working alone. She’s unable to do much for herself now, but she is still doing what she can for me. She does that with her expressions of appreciation. That makes all the difference in the world. When she was first diagnosed, we said we would face this challenge together, and we are.

Thirty minutes ago, Kate got up to go to the bathroom. I went to her. She asked me where the bathroom was. I showed her. When she came out, she asked if she could go back to bed. I told she could and that I would let her know when she needed to get up for her eye doctor’s appointment at 10:30. She thanked me. As started to walk away, she said, “What is your name?” I told her. She said, “What is my name?” She said, “And what is your name?” I told her again. She said, “What is my name?” She repeated both questions one more time. She didn’t ask out of fear or anxiety. She simply wanted to know our names. She looks to me for help with things like that. I’m glad to be here for her.

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Troublesome Moments

Kate does an incredible job maintaining her cheerful outlook most of the time. She does so even when she recognizes that her memory is poor and that she needs help with many of her daily activities. There have been only a handful of moments when she seemed troubled, afraid, or anxious. At least two, perhaps three, of those occurred last summer or fall. During the first two, she was able to express her feelings of concern about not knowing who she is and where she was. There have been a couple since that time when she was unable or unwilling to explain why she seemed so troubled. In each case, I focused on trying to comfort her. That worked.

She had a similar, though less intense, experience yesterday morning. At 7:30, I noticed that she had gotten out of bed and was entering the bathroom. I waited until she come out and went to her. When I reached her, I was looking for that smile I mentioned in a post yesterday. She wasn’t smiling. Instead, she looked very puzzled. I sensed this was another moment that might be an anxiety attack. I walked over to her. She said, “What now?” I put my arms around her and said, “Right now, I just want to hold you.” We held each other tightly for a moment before I suggested we go over to the bed.

At first, I thought I would help her into bed and try to comfort her as I sat beside her. I had a second thought and said, “Would you like me to get in bed with you?” She said she would like that. I took my shoes off and, fully clothed, got into bed. I asked if she could tell me what was troubling her. She said, “I don’t know.” I said, “That’s all right. The important thing is that we are together.” She agreed. Neither of us said a word for another thirty minutes before she fell asleep. Not wanting to wake her, I stayed with her another ten minutes. She opened her eyes as I started to get out of bed. I said, “I’m going to the kitchen. I’ll be there if you need me.” She smiled and closed her eyes. The crisis had passed.

This experience is another example of how well Kate’s intuitive abilities are working. It makes me think of two things. First, countering her feelings of anxiety or fear with a response that engenders comfort and security is the best approach.  Before Alzheimer’s entered our lives, I would have have asked what was troubling her, and she would have been able to give me an answer. We would have talked about it. I would have tried to think of a rational way to address the problem. In this case, she couldn’t explain what was wrong, and I have learned that it doesn’t work to try to “fix things.” I am reasonably sure that this moment was like the others. She couldn’t understand anything – who she is, where she was, or what was happening to her. Telling her she has Alzheimer’s didn’t seem like the right thing. The only thing to do was comfort her. My words were of little importance. I only had to be with her. Once again that worked.

I believe there is something else that is relevant. In another post yesterday, I mentioned that she is still able to learn some things intuitively. That seems to be happening with our relationship. She is increasingly dependent on me and is aware of it. In recent months, she has been especially appreciative of things I do. Some of this comes immediately following something specific I have done. Other times, it comes out of the blue. She says things like, “I’m glad I’m with you. I couldn’t find my way home.” She also says, “When I am with you, I feel safe.” I don’t think that arises from any special fear of others. I think she may be afraid when she doesn’t know the people around her or where she is. I’ve become a “security blanket” for her. I think that is one of the reasons she sometimes wants me to stay with her and the sitter. She is comfortable with them, but the amount of time and range of experiences she has with them can’t lead to the same feeling of security. Of course, all husbands and wives develop a certain amount of interdependence, but I am talking about a feeling that goes well beyond the way she felt before Alzheimer’s. This feeling has increased with her dependence, and, up to now, has helped to ease her anxiety and/or fear in moments like yesterday.

How long will this feeling that I can offer her security last? I hope forever. That reminds me of a quote of Maya Angelou’s that I posted recently. It seems even more appropriate to me now.

“. . . People will never forget how you made them feel.”

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The Beginning of a New Year

I let Kate sleep until almost 12:45 yesterday. She was sleeping soundly when I woke her. She smiled and waved. I sat down on the bed and told her I would like to take her to lunch. She said she would like that. When I gave her my hand to help her up, she said, “What’s your name?” I told her, and she asked me to repeat it. She said, “Where are my clothes?” I told her they were on the chair in front of her but suggested she might want to shower first. She asked where the shower is. I took her by the hand and walked her to the bathroom. On the way I said, “Today is Virginia Franklin’s birthday.” She looked puzzled and said, “Who’s that?” I said, “She is Ken’s wife.” She said, “Who is he?” I said, “He is your brother?” She said, “What’s his last name?” I told her. Then she asked, “Who am I?” I told her. When we walked into the bathroom, she asked again, “What is my name?” I turned the shower on for her. When she got in, she said it felt good. Then she said, “I’m awake now.” And she looked and sounded like it.

I left her in the shower and told her she could call me if she needed any help with her clothes. She said, “Why should I need help?” I told her I would put her clothes on the bed by my chair where she usually sits after her shower. In a little while, I went back to check on her. She was in bed running her fingers through her hair. I told her it was 1:30 and that she might like to get ready for lunch. She asked about her clothes. She had bundled them up and thrown them toward the end of the bed. Without asking, I proceeded to get each item of clothing for her. I gave her the opportunity to dress herself. She said she wanted to do it herself, but she kept asking for my help. When she was dressed, she wanted me to brush her hair.

When she was ready, she decided to make up the bed. She had completed one side and asked me to do the other side. I noticed that she had pulled the spread over the bed without pulling up and straightening the top sheet. She was about to put one of several pillows at the head of the bed when I told her I wanted to straighten the top sheet. After I had done that, she picked up a pillow and started to put it on the bed. Then she asked me if that was the way it should be placed. I told her there was a larger pillow that would go on first. She picked it up and placed it. Then she asked if that was the right way. This was one of those little things that happen so often. It struck me that she no longer knew how to arrange the pillows. She had been very particular about that. The large pillows have birds in flight on them. I used to place them the wrong way. She would always correct me. Now she was having to depend on me. She used to make up the bed every day. I remember when she would say, “My mother always said you should make up the bed first thing after you get up.” Three or four years after her diagnosis she rarely made up the bed. I’m not sure what happened, but she started again a couple of years ago. She hasn’t done it as well as she did before, but she does her best. It’s just a little thing, but there are so many of them now.

At dinner, I mentioned something about our having so many good experiences during our marriage. Kate immediately said, “Tell me three things.” Just as quickly, I said, “We had two great children.” She said, “Who are they?” I gave her their names and then went on to some of our travel experiences including our spending a summer in Cali, Colombia when the children were seven and five. That prompted her to talk about giving children experiences that broaden their lives without spoiling them. She felt we had been able to accomplish that.

As we left for home, she said she was very tired and might go to bed shortly after we got there. Then she said, “It may be a little early for bed. I agreed. Then she said, “I can depend on you to help me know what to do.” Then she went into a familiar topic about how comfortable she feels with me. She is beginning to seem more like a little child talking to her parent.

When we got home, she wanted to follow me to the back of the house. She wanted to use the bathroom but didn’t know where to find it. A few minutes later, she used her hand signals to ask if she should sit in her chair in our bedroom where I had put her iPad. I nodded “yes.” It wasn’t long before I said, “I’m glad your my wife.” She responded sternly saying, “I’m not a wife.” I said, “What would you say you are to me?” She said, “A close friend.”

None of these things is new, but it had been a day filled with confusion. It wasn’t like this one year ago.

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Reflections on 2018

As we begin this new year, I find myself reflecting on the past and thinking about 2019. Over the past couple of years, I have not been as hopeful as I was in the early years after Kate’s diagnosis. I think that is to be expected. Now we find ourselves in the later stages of Kate’s Alzheimer’s. This means that Kate will continue to decline. As she does, our lives will change as well. The most notable changes in 2018 have involved her memory loss, more confusion, sleeping later in the morning, and her growing dependence on me. All of these have led to corresponding changes in our lives.

Of course, Kate has gradually lost her memory throughout the eight years since her diagnosis in January 2011. For the most part that didn’t seem quite as problematic as it became in 2018. Part of that is psychological. For example, this was the year that she began to forget both my name and hers. More recently, she has begun to have trouble recognizing me as her husband. These changes in memory didn’t make any difference in our being active in the community. We still eat out for lunch and dinner. We continue going to the music nights at Casa Bella as well as attending other musical events in the community and listening to music at home; however, the loss of my name and hers hurts in a way that the memory of others doesn’t. This is a signal that most of her memory is gone. It has a special impact when she can’t remember our names even moments after I tell her, often immediately.

Memory loss is accompanied by greater confusion. This was the year in which she forgot a good bit about our house and the community in which we live. If asked, she couldn’t tell you where we live or where she is at the moment. She often asks me where the bathroom is in our house. She doesn’t know where her clothes are kept. As I have reported, she often thinks we are some other place than our own home. Her normal pattern when we return home is to wait for me to lead her to the back of the house. She also calls out frequently, “Hey, where are you?” when she doesn’t know where to go after going to the bathroom.

The changes in her sleep have had a greater impact on our lives than anything else. Before she started sleeping so late, we were regulars at Panera in the morning. We had gotten to know the people who work there as well as many of the regulars who stop by, not to mention the friends we know from other places that might be there. It was a stimulating experience for both of us. That is all but gone now. Most of the time we don’t leave the house until time for lunch.

The last big change for Kate has been her growing dependence on me. This was the year that I began to play a much larger role in helping her with everything. I am glad that she retains a desire to do things on her own. Just yesterday, she resisted my help with dressing and extending my hand to help her from the car as well as going up and down curbs. I hope this continues a while longer, but she is gradually turning over more and more to me. The most recent big change was accepting help showering and dressing from both of our sitters. I fully expected some resistance.

I don’t know exactly what will happen over the course of the coming year. I do know that she has made significant changes in the past 6-8 months. She is beginning to behave as one would expect of a person with Alzheimer’s. I have to expect more of that in 2019 unless she reaches a plateau. Even if that happens, it won’t be forever. That saddens me, and yet, I continue to be grateful that she has gotten along so well since her diagnosis. I am also hopeful that we will continue to enjoy life and each other even if it is not in the same way as in the past.

Kate and I are not unique in not knowing what lies ahead. The same is true for each of you reading this post. Along with my hopefulness about our own future, I wish each of you the very best in 2019. Happy New Year.

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An Interesting Day

Yesterday was a good, but not typical day. Kate was up quite early. I saw a light on in the hallway outside our bedroom about 7:35. She had been to the bathroom and was looking for her clothes. This early start enabled us to get to Panera before 9:00. This was the first time we had been there in the morning in almost two weeks.

It was also a day when she drifted back and forth between knowing me as her husband and not. Soon after I saw that she was up, I said, “Happy Anniversary.” She laughed, and I reminded her it was 57 years ago that we went on our first date. She said, “Only you would remember that.” She asked my name and hers two or three times while we were at Panera. She asked rather casually without any sign that she was working to remember. She just wanted to know.

The fact she was up so early meant there was no need to let Mary get her up and dressed when she came at 1:00. We’ll wait until another time for that. Kate greeted Mary very naturally and warmly when she arrived. The only indication of concern she expressed was when I said I was going to the Y. She said, “What am I going to do?” I told her that she and Mary could watch a DVD or go to Panera. She expressed interest in a DVD. I put on Les Miserables. They were watching as I left.

When I got home, they were still watching. Kate was relieved to see me and indicated she was ready to get out of the house. After Mary left, I asked Kate if she missed me. She said yes and got tears in her eyes. We got ready to leave for dinner.

On the way to dinner and several times while at the restaurant, Kate said she was very tired and wouldn’t last long after getting home. She frequently says that and then gets her second wind after dinner. That’s what happened last night.

When we returned home, she got out of the car and asked, “Where are we going now?” I told her we were going into our house. She liked that. Once inside, she commented on how much she liked the place. After taking her seat in our bedroom, she said, “We’ve been here before, haven’t we?” I told her we had. A few minutes later she said, “What is this place?” I told her it was our house.  She said something about its being “conveniently located.” After another minute or two she said, “You’re a good traveler.” I asked what made her say that. She said, “You know how to get here.”

She was having trouble working her puzzles about 9:00. I suggested she get ready for bed. She wanted to know what she should do. I brought her night clothes to her and got her to the bathroom before she went to bed. She was a bit confused and needed my help all the way.

Just after 4:00 this morning, she wanted to go to the bathroom and asked me where it is. I got up and walked her there. She also wanted to brush her teeth and was back in bed in a few minutes. When we got back in bed, she said, “Who are you? My husband?” I said, “Yes.” She didn’t say anything more and didn’t go to sleep right away. She started running her fingers through her hair. She approaches this as though it is a chore. She evens says, “I’m working on my hair.” In a few minutes I said, “Don’t you want to go back to sleep?” She asked if I wanted her to stop. I told her she could stop if she wanted to. She said, “Oh, thank you.” with a sound of great relief. It wasn’t long, however, before she started again. She stopped a few minutes later. She was asleep when I got up at 4:50.

This is one of several times recently when she has gotten up between 4:00 and 5:00. I’m beginning to wonder if this is going to be a pattern. If so, I may need to get to bed a little earlier since it is hard for me to go back to sleep. For many years I have gotten up around 5:00, so it doesn’t bother me to get up about that time; however, I started getting up around 6:00 I when I stopped walking in the morning. To make that work I have been getting to bed later than I used to. I might need to make another adjustment.

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Increasing Dependence and Insecurity

I realize that my posts convey the fact that Kate is increasingly dependent on me, but a couple of things recently illustrate that more strongly than before. One of those occurred while we were in North Carolina. At the hotel yesterday morning she didn’t want me to leave her. I don’t mean leave the room. She didn’t want me to leave her bedside as she got up and as she dressed. I moved a couple of times, and she reacted quickly telling me not to leave. She wanted and needed my help with everything. One might think that is a typical reaction for her since she is normally groggy when she wakes up, but this was the first time I noticed a sense of insecurity if I left her to get ready by herself.

I saw the same kind of insecurity the night before when we were standing around the theater lobby after the show. I was talking with someone when someone else stood between Kate and me. In a few minutes, I saw that she was looking around for me with that same sense of insecurity. She asked the friends we had come with to the show where I was. I was standing beside the man who said, “He’s right here.” She had a look of relief on her face.

An incident yesterday afternoon was more surprising to me. I had a routine doctor’s appointment and took Kate with me as I have done for the past couple of years. This visit was a little different than previous ones in that I had a number of questions to ask the doctor. Given Kate’s dependence on me, I have been thinking much more about my own health. I recognize how important it is for me to stay healthy. For most of my adult life staying healthy and in good physical shape has been important to me, but now it is essential.

Thus, I was more attentive as the doctor went through my lab report. I asked more questions than usual. I was especially interested in my weight, cholesterol, and blood pressure. Since my last appointment, I have not exercised nearly as much as I had been. Not only that but we have eaten more desserts on a regular basis than we used to. I have also felt more stress. I talked to the doctor about my self-diagnosis of a pinched nerve in my hip. We discussed the likely source of the problem and stretching exercises that might help that. Of course, the problem is gone now, but it is the kind of thing that could happen again if I return to my regular exercise routine.

I am glad to report that all my lab results, though not as good as last visit, were in line with my past history. The only difference was my platelet count. It was fine but significantly lower than last time. That was obviously the result of my having donated platelets the afternoon before my labs the next morning. I had gained two pounds but was right in line with my personal goal. My blood pressure was also good.

As Kate and I left the doctor’s office, I could see that she looked worried. I asked if she were all right. She went on to explain that she had been thinking about what would happen to her if something happened to me. She couldn’t imagine what she would do. I told her I was going to make sure that I stay in good shape and that I would be able to take care of anything she needed. She seemed relieved, and we didn’t say anything more. I was struck, however, by how well she understood the potential problem for her should anything happen to me. It made me think of a conversation we had a few nights ago. She said, “Thank you for everything that you do for me. I couldn’t live without you.” I think the doctor’s visit heightened her sense of dependence and insecurity. I don’t think she understood much of what the doctor and I talked about, but she detected a tone of seriousness that shook her.

One other incident occurred just this morning. Kate started to get out of bed about 4:20. I asked if she needed to go to the bathroom. She did and asked where it is. I told her I would show her. She needed my help getting on her feet and seemed a bit unsteady. I held her hand and walked her to the toilet. She seemed so needy, like someone much older than she is. Of course, some of this goes along with her grogginess upon waking, but it seems like more than that to me. I continue to feel that her lack of exercise is creating a problem. Increasingly, she has difficulty getting out of a chair or into and out of the car. During the winter, I may need to think about museum outings that she won’t think of as exercise. We may also be reaching a time when I could get her to walk around the house. I don’t want to see her wheel-chair bound anytime soon, but even if we can avoid that her dependence will continue to increase as illustrated by the events above.

As I was about to add this post to the blog, I heard Kate say, “Hello.” I looked up and saw her standing in the doorway to the family  room. I walked over to her. She said, “Is anyone else here besides you and me?” I said, “No.” She said, “Good.” I’m not exactly sure what prompts this, but this is something she asks periodically. I suspect she may feel she has some obligation as a hostess if there is someone else with us. Then she asked me if she could go back to bed. I told her it was still early (8:20), and she could sleep a little longer. She got back in bed, and I pulled the covers over her. She said, “You’re the best husband.” I took note of the fact that she remembered that I am her husband. That reminds me of something else. I don’t recall her asking my name or anyone else’s  yesterday.

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A New First in Connection with Sleep

Except for Thursday, Kate has slept late every morning this week. Night before last, she went to be bed later than usual. Several times I suggested that she get ready for bed. Each time she was engrossed with her jigsaw puzzles and wanted to finish “this one.” She always forgets and opens another one. I was able to get her into her night clothes, but she continued on her iPad after getting into bed. Finally, I decided to get in bed. That usually prompts her to do the same. This time she kept on working her puzzles. She didn’t want to but agreed to call it a night. It was after 10:00. She seems to need about twelve or thirteen hours a night, so I was a little concerned that she might be working her way into staying up longer and sleeping later. I suggested she stop for the night, and she reluctantly agreed.

Yesterday we had no obligations to be anywhere at any time nor did we have a sitter. I decided to let her sleep until about 10:30. That would have given her close to twelve hours sleep. As I have been doing lately, I turned on some music. About twenty minutes later, I checked on her. She was sleeping soundly. I tried to wake her gently. She looked up at me and immediately closed her eyes. I asked if she would like me to take her to lunch. She didn’t answer. I told her I would let her sleep a little longer. I went back a couple of other times before trying a little harder to get her up. That was shortly after noon. She was resistant. I asked if she would like me to go ahead to lunch and leave her with the housekeeper. She asked me to go ahead, and I did. That was a first. Each time I have given her the option to stay with the sitter and have the sitter take her to lunch later, she has always gotten up. That didn’t work this time. When I got back, she was still in bed. That’s when I told her I hated to get her up but felt I was concerned that she might not be able to get to sleep tonight if she stayed in bed much longer. She got up. As she does frequently now, she asked me where the bathroom is.  She held my hand as I walked her there.

She is still vacillating between wanting my help getting dressed and holding on to her independence. She started to dress herself. Then she asked that I stay with her. Ultimately, she needed help with every step. She struggled a second with her pants and then handed them to me to put on. She put on her socks by herself. Sometimes she gives them to me to put on for her. She handed her shoes to me so that I could put them on for her.

It was 2:25 when we left the house to get her some lunch. I had decided earlier to skip our customary lunch at Bluefish. We went over to Panera where she got a sandwich. We stayed there another until 4:00 and came back to the house. We relaxed in the family room. After a while, she put her iPad down, closed her eyes and rested in her chair. She was still tired even after getting up so late. Because of that I suggested that we eat early.

We had a very nice time at dinner. The food was good, but it was our time together that was special. We were both enjoying the moment. That doesn’t mean that she didn’t ask me the restaurant’s name multiple times as well as the city name. One of the new things is her asking, “What is Knoxville?” when I tell her where we are. I tell her that Knoxville is a city, like Fort Worth is a city. While eating, we talked about our marriage and being grateful that our love has lasted. She said, “I’ll tell you one thing. I’m going to keep you.” Immediately following that she said, “What is your name?”

Those of you who visit this site regularly know that we view eating out as a social occasion. We experienced a little of that as well. We saw two couples that I have known professionally. One of the women reminded me that she had hired me to lead a workshop at the State Library many years ago. I didn’t remember it at all. It must have been when I was just starting out because leading workshops was never a significant part of my career. I was pleased to see that the other woman immediately engaged Kate in conversation. We see her and her husband in various places around town and joined them for a few minutes at their table before we left.

On the way home, Kate asked, “Where are we staying tonight?” I told her we were going to stay in our “very own home.” She was both surprised and pleased. Since she is unable to remember where she is, she often feels like we are someplace else. Most of the time she thinks we are in her home town of Fort Worth. She said she was tired and was going to bed early. As we arrived at our house, she said, “It looks like they’ve kept up the house.” Then as she got out of the car, she said, “I haven’t the slightest idea where I am.”

Once inside the house, I put on an album of Puccini arias. She stopped working on her iPad to listen. When it was over, I asked if she would like to watch the last act of La Boheme. We had watched the first two acts the previous night. When it was over, we got ready for bed. She asked, “What is your name?” I asked, “Do you remember that we are married?” She nodded. I said, “Do you love me?” She said, “Yes.” Then I told her how long we had been married. She was as surprised as she has ever been. Then I said, “My name is Richard Creighton.”

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The Rest of Our Day Yesterday

Since our sitter was unable to come yesterday, I decided to see just how long Kate would sleep if I didn’t wake her. When she was still sleeping soundly at 11:30, I decided to put on some music. About fifteen minutes later, I checked on her. She opened her eyes as I approached the bed. I won’t know how long she would have slept, but I decided it was better to get her up. Although she sometimes takes as long as two hours to get ready to leave the house after getting out of bed, she was ready in an hour and fifteen minutes. Except for needing help getting her pants on and misplacing the underwear and socks that I had put with her clothes, everything went smoothly.  (I haven’t gotten used to the rapid disappearance of things like her underwear and socks. I looked in the obvious places around the chair where I had put them without any luck. I keep a large supply of both items. It comes in handy at times like that.) I asked if she wanted my help getting dressed. She didn’t, so I felt sorry for her when she had to ask. She still wants to be independent. That is something I understand.

We went to lunch at Panera and stayed there for about two hours before going home. When we came inside, Kate went directly to the bathroom off the laundry room. I went to the back of the house. I walked back to the family room where I expected to see her. She wasn’t there. I looked in several rooms and still didn’t find her. I called to her. There was no answer. Then I went to the living room. She was lying down on the sofa. It was obvious that she wanted more sleep. I let her stay there until 4:30. Then I decided she would be awake all night if I didn’t get her up. It turned out that she was awake although she must have been dreaming something. When I walked in, she said, “That’s funny.” I asked what was funny. She thought a moment but couldn’t remember. I asked if she had been dreaming. She said, “Maybe so.” The she asked, “Where are we?”

We went back to Panera. As we got out of the car, she asked, “Where are we?” I told her we were in Knoxville. She said, “I know that.” Then I said, “Panera.” After we sat down, she said, “I think I remember this place.” A few minutes later, she said, “You’re a nice guy. I guess that’s why I married you?” I said, “And we’ve been married 55 years.” She looked skeptical and said, “You must have been gone a lot.” Then she said, “What’s your name?” She asked me to repeat it slowly. Not too long after that she said, “I think I’ve been here before.”

From Panera, we went to dinner. She told me she was sleepy and might go to bed soon after we to home. When we returned to the house, she said, “They take very good care of this place.” Once we were inside, she commented on how much she liked the family room. She does this almost every time come back home. It always sounds like it’s the first time she has seen it. Sometimes she doesn’t recognize it as our house. I’m not sure what she was thinking last night. She asked what she should do now. I suggested she might want to brush her teeth. She said, “Where’s the bathroom?” I said, “I’ll show you” and showed her the way.

She had asked if there were something on TV that we might watch. I decided to try the DVD of Les Miserables again. This was the first time I recall that it did not get her full attention. She worked on her iPad, but put it down periodically to focus on particular songs, but it was clear that it did not grab her the way it had in the past.

Our son called, and we had a nice conversation with him. I handed the phone to Kate to answer. In previous occasions when I have done this, she has declined and handed the phone back to me. This time she accepted it and took the lead in our conversation. She handled herself well except for getting confused about what Kevin was telling her about a recent business trip. After his call, she got ready for bed but was still awake an hour later when I got in bed.