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This Morning

Last night I picked up an email from my friend Tom Robinson. He asked how I managed to remember the different experiences Kate and I have and especially the times they occur. In my reply, I confessed that I forget a lot. So much is happening now that it is impossible for me to remember everything. I really wish I could do a better job capturing our conversations. They would be much more effective in telling our story than my personal descriptions, but it is becoming increasingly difficult for me to remember such details. There are some occasions when I am able to write shortly after a particular incident. Such is the case right now.

It is now 8:19 Friday morning. I was up at 6:25 and had finished breakfast. It looked like this would be a morning when I would be able to walk and listen to my book. As I was preparing to do that at 7:50, I set the video cam on the island in the kitchen. When I did, I saw that Kate was about to sit up. When I reached her, she was sitting on the edge of the bed. She looked up at me and smiled. I told her it was good to see her and, especially, to see “that smile.”

As we walked to the bathroom, she said, “I sure am glad to see you.” Her tone of voice conveyed a sense of relief. It was clear that she was quite confused although she seemed to recognize me. As we returned to the bed, she repeated how glad she was to see me. She said, “What do I do now?” I told her it was still early, that I thought she should try to rest a little longer. As I pulled the covers over her, she said, “Where are we?” I told her we were in our house in Knoxville, Tennessee. We went through these same questions two or three times. Then I asked if she would like me to bring my things into the room and sit with her. She said, “Oh, yes.” That’s where I am and plan to stay until it she is asleep. Then I will slip back to the kitchen. In the meantime, I put on a Jason Tonioli album entitled Finding Peace. Most of the pieces are just piano and violin, and, as the title suggests, they are very peaceful. It is playing softly in the background. If it doesn’t help Kate get back to sleep, it may do it for me right here in my chair.

There is nothing special or particularly unusual about this experience. In that respect, it is a good one in that it captures a rather ordinary part of our lives. It’s not always like this. Sometimes she is much more disturbed by her confusion. Other times less so. It is unusual, however, for her to want me to stay with her. That is a sign of greater insecurity than most days.

There is something else about this morning that is typical. It is the way we relate to each other. She depends heavily on me and looks to me for guidance. This is true most of the time, and that makes caring for her much easier for me. It’s not always like that. There are times like two days ago when she wanted to be independent and resisted my help. That was a rough moment and only subsided when I let her take charge. That helped to re-balance the relationship. When she is on her own to dress, it isn’t long before she asks for my help. That works because I am following her rather than directing. In moments like this morning, she is ready to turn everything over to me. Making a decision about what to do can be a challenge when your mind is completely blank.

The last song on Tonioli’s album, Brahm’s Lullaby, is playing. Kate is now sound asleep. I think I’ll take my morning walk around the house (inside, of course) and listen to my book.

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Change and Adaptation

Like most people, I tend to look for explanations for why “things happen.” I think that is part of our natural curiosity. In addition, I have spent a career looking for reasons that people do what they do, why they change, and what they might do in the future. Since Kate’s diagnosis, I have tried to understand everything that is happening as well how to prevent and solve problems. The most important thing I have learned is how difficult it is to know what is coming next and why.

I’m thinking about this while at Panera. It’s 8:37, and we’ve been here about thirty minutes. This is about the third time we have been here in the last few days. In some ways, this doesn’t seem unusual to those who have read my earlier blog posts or those with whom I have talked about our almost daily visits here. Those regular visits declined over a year ago. I related that to changes in her sleeping. In turn, I attributed her sleeping later to the progression of her Alzheimer’s. For months our visits have been infrequent. What has made her get up earlier recently? Is this something that will continue for a while, or are these a few isolated events?

The answer to these questions is “I don’t know,” and that is the answer I have given for most of the changes that have occurred during the past nine years. What I do know is that Kate’s changes mean that I have to change as well. My natural tendency, however, is to continue doing what I have done before. I admit to being a creature of habit. The only thing that saves me is my desire to provide Kate with the best care possible. If that means I need to make a change, I do it. I don’t mean that making a change is necessarily easy. Each one comes with a measure of psychological discomfort. I like routine and predictability.

Early on, I thought that a writer like Neil Simon could have a field day writing about a couple like us, one with Alzheimer’s, the other with OCD. It really could be comical. On the other hand, I am pretty sure that even if a caregiver were not driven by a desire for order and routine, he or she would ultimately find it challenging to deal with the unpredictable changes that take place with this disease. I feel for those who can’t. I have read many posts on Facebook and Twitter and online forums in which caregivers rant and rave over the behavior of their loved ones. I know it can be very hard. My own situation is much easier because the relationship that Kate and I have now is a pretty good extension of what it was before. The major change would be her dependence on me, but she is generally cooperative and loving.

This morning was a good example. I keep a close eye on the video cam so that I can get to her quickly if she calls me or is getting up. I don’t, however, keep my eyes on it every moment. Today, I went outside to check the water level on our pool that has a leak. When I got back inside, Kate walked into the family room. She was looking for me.

It turned out that she had waked up and was ready to get dressed for the day. Of course, she didn’t know where to go or what to do. She was glad to see me, but she hadn’t panicked and was in a good humor. I apologized for not being there as she got up. It hadn’t bothered her. She just wanted her clothes. I told her I could help her. Then I took her to the bathroom to get the process started. When she started to brush her teeth, she asked, “I sure am glad you are here. <pause> Who are you?” When I gave her my name, she wanted to know “Who are you to me?” I told her I was her husband. She was surprised. I said, “Would you rather think of me as a friend?” She said no. During the next twenty minutes, we repeated this exchange several times. She was always surprised, but comfortable, with my answer. When I helped her dress, she said, “You know, you’re a pretty nice guy. I think I could like you.” I think that captures well what her attitude is like.

Now what does this have to do with change and adaptation? I’m about to tell you. This is the third day in a row that Kate has gotten up early. Each time it has been before or during my morning walk. I like that walk. It is not simply a time for a little exercise. I also listen to books. For me it’s a nice way to start the day before my responsibilities with Kate begin. After my walk, I work on my blog. When Kate is up early, it leaves me to find another time to write.

My point is that I like routine, and changes like her getting up much earlier change that routine. I’d rather not change. On the other hand, she was so nice this morning that I want to take advantage of the time we have to enjoy ourselves. That is a higher priority for me, especially at this stage. I may be having a harder time getting other things done, but it is a pleasure to have time like this.

An hour has passed since I started this post. We are still at Panera, and Kate is still working her puzzles. That’s an unusually long period of time without her getting frustrated. I have been helping her throughout, but she is doing better than she has done in a while.

BREAK

Whoops, it is now 10:45. As I was in the middle of the previous sentence, Kate hit a roadblock with her puzzles. We came home where I will now close and upload this post.

Despite her having trouble and wanting to stop, she was still in a good humor and wanted to help me gather our things together to go home. Once here, she hit her recliner where she is resting. That’s a good thing because I have a noon lunch meeting at United Way. That’s an hour earlier than the sitter comes. I arranged for a church friend from to take Kate to lunch and get her back home for the sitter at 1:00. I have done that once before, and it worked well. This is a person who used to be on the staff at church when Kate was the church librarian. They ate lunch together frequently and have always had a good relationship though we don’t see her often these days.

While Kate has rested, I took care of a number of household chores. Those never end, and I am always behind. It’s been a nice morning. I am glad she got up early even if it meant no walk that I didn’t finish this post until now. Until next time, have a nice day.

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Concerned About Not Doing What She Believes She Should

When Kate got in the shower yesterday morning, she got upset. At first, she was using the soap. I told her to use it. Then she got very teary and said , “Will you still love me?” I told her I loved her from the day the day we met and would always love her. She gradually calmed down .

As I was helping her into the car after lunch, she said she wanted to tell me something. Then she said, “You have told me a lot of things, but I know I won’t remember them. Promise me you won’t be mad at me?” I assured her that I wouldn’t get mad and was happy to tell her as many times as she needs to ask.  She said she knew I wouldn’t but some people would. She said, “I know you must get tired of me asking you all the time.” I found her concern about my reaction strange. I felt almost like she was afraid of me. It was hard for me to imagine that because it is so out of keeping with our relationship.

She went on to say something else but stumbled on the words. My interpretation was that she couldn’t understand why she has so many problems. I don’t know that I am correct though I do know this is an ongoing concern of hers. Earlier at Panera she wondered why she does so many “stupid things” when she is so smart. Periodically she talks about being smart. I think that is because she is aware of so many things she does that seem to contradict that. I don’t usually feel sad, but this is one of the things that does it. I don’t like to see her suffer.

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This Morning at Panera

Kate was up this morning at 7:00 to go to the bathroom. She took a shower and then went back to bed. She was up in time for us to make a trip to Panera. As we got out of the car, she said, “Help me. Why do I do stupid things when I’m so (stumbles on the word) I said, “You’re smart.” She said, “Tell people that when I do something stupid.”

We walked in the front door, and she said, “What’s the name of this place?” I said, “Panera.” She repeated it as we were about to walk by a woman working on her laptop. Kate stopped at her table and asked, “Do you know the name of this place?” The woman nodded. Kate started to say the name but forgot it and turned to me. I told her again, and she told the woman. She said this in a childlike way but also very outgoing.

After I had gotten our drinks and her muffin, I took a seat across the table from her. She was unusually talkative. She said, “What’s your name?” I told her. Then she said, “What do people call me when I am with you?”  A short time later she asked again and then said, “Am I your nephew?” When I told her I wasn’t, she said, “You’re not my ____?” I said, “Yes.” She frowned. She brought up our relationship several other times. At least two times she was happy about our being married. Other times she wasn’t.

While there, she asked my name almost as many times as she asks Frank Sinatra’s name at Andriana’s each Sunday.

At one point, she said, “I’m learning my colors.” Then she looked at her gloves and said, “Look. They’re black.” I pointed to the lid of her cup and asked, “What color is this?” She wasn’t sure. I told her it was blue. The lid has a small plastic part on the top of the lid that slides over the hole. I pointed to it and said, “If the lid is blue, what color is this?” She hesitated a moment. Then she said, “Light blue.” I told her she was right, and she was as excited as a child might be.

Throughout our conversation she made references to growing up as though. Once she mentioned her age. I said, “How old are you?” She thought a minute and said, “Thirty or forty. Forty. I’m more mature than thirty.”

We left after she finished her muffin. We walked by a table of women who were there for a meeting of their book club. We know one of them from church and spoke to them briefly. Kate was very talkative. She would have continued talking longer if I hadn’t encouraged her to move on.

As we got in the car, she said, “What would I say if I were introducing you to someone?” I said, “This is my husband Richard.” She didn’t want to accept that I was her husband. I said, “You could say, ‘This is my very good friend, Richard.’” She wanted to drop the word “very” and just say good friend.

On the way home, she talked about our marriage and mentioned my name at least twice. She also commented on my being nice to her. She said, “You’re nice to me. You take care of me.” “You have taught me a lot of things. You’ve taught me to be polite.” Again this was said the way a little child might have said it.

When we walked into the house, she asked my name. It’s a good example of how quickly her brain works and then doesn’t work. It had been no more than two or thee minutes since she had called me Richard. Continue reading “This Morning at Panera”

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Two Happy Moments

As Kate continues to decline, I expect that we will experience more sad moments than we have had in the past. I hope that I will be able to say that we still have happy ones as well. That is certainly true right now. Two days ago, for example, she got up early. She seemed to be in a good mood. She did ask my name and our relationship multiple times before she got dressed. Each time I mentioned that I was her husband she was surprised but accepting.

When she was dressed, she asked if she could lie down. I told her she could and then said, “I love you.” As I said it, I remembered the old song “I Love You a Bushel and a Peck.” When I mentioned it to her, she also remembered it. Then she said, “We could sing it together.” I took out my phone and searched for the song. Then I played it through our audio system. We forgot most of the lyrics, so I pulled them up on my phone. We must have sung the song five or six times. It may have been a little silly, but it was fun. Kate really got a kick out of it. I think it also made it easier for her to get up since her already good mood got better. I just know that right after our singing, I said, “Now, I’d like to take you to lunch.” She got right up.

We had another Happy Moment at dinner that night. We were having dinner at Chalupas when I mentioned how nice it was that we enjoy the simple pleasure of being together. She picked up on that and began a conversation about how fortunate we are in so many ways. From there, she gravitated to talking about the people who are not as fortunate as we are in our marriage and many other aspects of our lives.

I enjoy hearing her speak so naturally. She didn’t seem to have a care in the world. She is often concerned about what she should or shouldn’t do or say. She isn’t that way a lot of the time, but she does frequently ask me to watch her or to keep her from doing “something wrong.” She knows she does a lot of things that aren’t right. It’s good to see her at moments when doesn’t have those concerns. They make for quite a few Happy Moments for both of us.

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The Longest Time Kate Has Not Remembered Me As Her Husband

The past couple of days have been similar to a few other days this past week. Once again, Kate was up early. Shortly after getting to the bathroom, she said, “Who are you?” I gave her my name and told her I was her husband. She said firmly, “No.” I said, “I’m a friend, and I can help you with anything you need. She didn’t ask again until we were on the way to Panera around 9:00 when she asked, “Why am I with you?” I said, “Well, you’re my wife.” She gave me a look of astonishment and said, “What’s a wife?” I explained, but she was not ready to accept that we are married. I said, “Let’s say we’re very good friends.” That usually works, but it didn’t this time. She didn’t want to hear that either. At Panera, the subject came up again with the same reception. Except for her reaction each time I told her we were married, she acted very normally with me. Nothing would have suggested that we weren’t husband and wife.

At lunch, I said, “I think I might make you my girlfriend for life.” She was insistent that would not happen and told me not to say anything more. I didn’t until we were on the way home from dinner when she said, “Why am I with you?” as she had done that morning. I gave her a similar response and she did the same. I didn’t say anything more until she was in bed. I sat down on the bed beside her. She smiled at me, and I said, “I love you. Do you know how long we have been married?” She smiled again and said, “How long?” That was the first sign of recognition the entire day.

Kate started the day even earlier this morning. She was awake at 6:20 when I got up. I asked if she wanted to got to the bathroom. She said, “Not right now.” I told her I would be in the bathroom and to call me if she needed me. I had just gotten to the bathroom when she called.

She used the toilet and then asked, “What now?” She pointed to the shower. I hesitated a moment because it was so early. I knew she would want to go back to bed. Sometimes, however, she doesn’t want to shower. I quickly decided this was an opportunity I didn’t want to pass up. I told her I would get the shower ready for her. Before getting in, she asked, “Who are you?” When I told her my name and that I am her husband, she didn’t believe it. I told her we were friends. That worked.

After her shower, she wanted to lie down again. I turned on an album of cello adagios at a soft volume. I dressed and told her I would be in the kitchen and to call me if she needed anything. I asked if she wanted me to turn off the music. She said, “Oh, no. Please leave it on.” It was one of a number of reminders in the past few days of how much she enjoys music. It is now 8:30.

BREAK

It is now 10:15. Right after my earlier entry, I heard her say something. I went to the bedroom. She hadn’t called me. We spoke for a few minutes. She surprised me when she wanted to know who I was. I gave her my name and told her I was a friend and that I could help her with anything she needed. She didn’t show any signs of wanting to get up, but it also didn’t look like she was ready to go to sleep. I asked if she wanted to get up. She said she did but needed some clothes. I told her I would get them. She was surprised that I would know where to find them. I told her I knew a lot about her and that I knew her parents. She asked their names. Then she asked my name. I said, “Kate.” She recognized her name and asked for her full name. I said, “Kate Franklin” (her maiden name). I got her dressed without a problem. Even if she didn’t remember that we are married, she clearly trusts me.

The first real spark of life came when she reached the family room. She noticed all the usual things, the room, the flowers, the flowers on the patio, the back yard, and the photos. We spent about fifteen minutes just looking around as she enjoyed what she was seeing. When we started for the kitchen where I had laid out her morning meds, she said, “Don’t you hate to leave this place?” I explained that it was ours and that we would be coming back after getting her a muffin. She was surprised and happy.

We are now at Panera. She stopped working her puzzles and is finishing up her muffin. That means we will probably head back to the house shortly. We won’t be there long before going to lunch. She is happy. I am happy. I am optimistic about the rest of the day.

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The Past Two Days

Monday morning Kate got up early. I was glad because she was up in plenty of time to be ready for the sitter. She was more confused than ever. I’m glad to say that she wasn’t seriously disturbed about it. I wouldn’t call it an anxiety attack, but she was certainly puzzled. It was similar to what I can remember of movies with someone who is experiencing amnesia. This is hard to put in words, but she seemed in a deeper state of confusion and required a little longer to come out of it.

It began when she got out of bed and went to the bathroom. We went through what is becoming a regular routine. She asked about the picture of our daughter. When I told her she, she couldn’t accept that. I started to explain that she and I are married and have two children. That was too much for her. I gave up explaining things. I decided to let her senses go to work.

I took her by the hand to the hallway with the photos of her parents and grandparents. I showed her the picture of her mother taken around the time of her marriage. I told her who she was. She was taken with it as she usually is. We talked about her mother a few minutes. Then we went to the family room where turned on the soundtrack for My Fair Lady. I know she likes that and thought it might jar her memory.

I picked up her “Big Sister” album that her brother made for her. I showed her the cover photo. She didn’t recognize the two children. I said, “This little girl is Kate Creighton.” She said, “That’s me?” I said, “Yes, and this is your brother Ken.” I started to say more when she noticed the photo book of her father’s family. The cover has an ink drawing of the house in which her father grew up. I told her about the house and then opened to the first page of photos of her grandparents. Rather than reading the text, I just told her about her grandparents.

As we were getting started, she heard he song “With a Little Bit of Luck” playing in the background. She started moving her hand to the beat of the music and sang along with the lyrics of the title each time they came up. She asked me to stop talking about the photos for a minute so that she could listen to the music.

Between the photo book and the music, Kate started feeling more at ease. Before long, the doorbell rang. It was our sitter. I told Kate it was Cindy who was taking her to lunch. She looked puzzled. Then Cindy walked in, and Kate responded enthusiastically. That put me at ease. I was getting especially concerned about leaving her in such a confused state. I quickly gathered my things and left for Rotary. When I got home later, Kate was resting. Cindy told me that everything had gone well.

Yesterday was another day of ups and downs. Some of it was humorous. As I opened the car door for her after lunch, she said, “Take off your glasses.” I did. She said, “No, that doesn’t help.” I hope I can get through this without developing a complex about not being handsome.

The day started well. She was up early again. She did have one unpleasant experience. She looked at herself in the mirror and said, “I’m ugly.” I said, “I think you are beautiful.” This has occurred several times before, but her reaction this time was the strongest I have seen. The problem is her weight gain. She is forty to fifty pounds heavier than she was when she was diagnosed. Most of the time she doesn’t seem to notice the change. Twice in the past two days she has commented about drinking with only one straw instead of her usual two. She believes that will result in her drinking less.

We went to Panera but stayed only long enough for her eat her muffin. She worked on a puzzle while eating and got frustrated when she couldn’t go any further. She had completed all but one piece. She couldn’t see it because it was on top of the other pieces. Anyway, we went home where she got on the sofa for what I thought would be a short rest. Instead, she picked up her iPad and worked puzzles for the next thirty minutes before we left for lunch.

On the way home from lunch, we stopped by Target to buy candy for Halloween. That turned out to be a bad idea. I didn’t take into consideration that the candy is at the back of the store. That meant a long walk for Kate. She was ready to leave shortly after entering the store. We came back come where she rested in her recliner for almost two hours.

She went to sleep but woke up a short time before we went to dinner. I asked if she would like me to go through one of her photo books with her. She did. I pulled a chair beside her recliner, and we began. It wasn’t long before we slipped into a conversation about our lives together. We talked about our courtship and getting married. We also talked about our feelings for each other. It was a very tender moment. I recorded about fifteen minutes of it.

Before leaving for dinner she went to the bathroom. When she came out, I told her we were going to dinner and then to a musical performance at our local art museum. I helped her put on a different top that I thought would be more appropriate. Then I told her she looked beautiful. I followed that by saying, “Do you know that you are the most important part of my life.” She was unusually emotional and broke into tears.

All the way to dinner, she was concerned about being with other people last night. She said things like “I hope I don’t embarrass you.” or “I want you to keep me from doing something stupid.” I found it hard to believe that she would have remembered my telling we were going out after dinner, but maybe she did.

At dinner, she did something unusual. She wanted me to sit beside her in the booth rather than across from her as I usually do. I was glad to do that but concerned about her insecurity. We had a nice meal. By the time we were finished, she seemed fine. We went to the concert, and she got along fine. It was a “concert and conversation” with Peter Buffet, Warren’s son. Apart from being a musician, he and his sister work run the foundation established by his father. He spends most of his time doing philanthropic work, hence the reason he was here for United Way. I was amazed that Kate followed at least some of the things. I could tell by her reactions to what he said. She wouldn’t have gotten the details, but she understood isolated remarks. Afterwards, she said, “You’re gonna have to explain this to me.”

As we left the concert for our car, she asked where we were. I told her we were at the museum. She wanted to know the city. I told her it was Knoxville. In the car, she said, “Are we in New York?” I told her we were in Knoxville. She repeated variations of this question all the way home.

At home, she spoke quietly as though others were here. I told her we were the only ones here. She said, “Are you sure?” She was still confused about where she was, but she was happy when she went to bed.

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Another Good Day

Kate woke up at 8:00 in a good humor and appeared to recognize me. At least she greeted me with a smile. As we entered the bathroom, she said, “Excuse me, I don’t remember your name.” She asked just the way she would have done with a casual acquaintance. I said, “My name is Richard, and I am your husband.” When I said, “husband,” she looked surprised and doubtful. When this happens, I shift gears. I said, “Let’s say we’re good friends. How’s that?” She said, “Yes, you’re a good friend.”

While on the toilet, she asked my name at least two or three other times and again as she started to brush her teeth.

Her usual pattern would have been to return to bed, but she was ready to get dressed. I was happy about that. I had arranged for the sitter to come at 11:30 instead of 1:00 because I had a United Way meeting at noon. Her being up early provided enough time to get her a muffin at Panera, pass a little time there, and easily get back home before the sitter’s arrival. As it turned out, we got home forty-five minutes before the sitter.

While at Panera, she said, “Do you have a girl friend?” I hesitated a moment and then said, “I would say that you are my girl friend.” With tears in her eyes, she said, “That’s the nicest thing anyone has ever said to me.” She went on to say, “When we get older, I think you will be somebody like (struggling for the right word) a bank president or something.” I thanked her and said, “We are fortunate to have found each other.” That prompted her to begin a conversation (almost a soliloquy) about other people who haven’t been as fortunate as we have been. I was mostly a facilitator. This conversation lasted about fifteen minutes before she was ready to go home.

I didn’t say anything about the sitter’s coming until the doorbell rang. I explained to Kate that I was going to a meeting and that she and Mary were going to have lunch together. She gave me a dirty look and asked why I couldn’t go with them, but she didn’t look insecure. “Irritated” would be a better description.

This was the longest I have left her, almost five rather than four hours. That made me wonder what she might be like when I got home. As it turned out, she and Mary were seated on the sofa looking at her mother’s family photo book. She didn’t even look up when I walked in the room. I was glad to see that. It encourages me to see her sharing moments like this with Mary. I feel that is an important bond. Mary has been with us for over two years while the Monday sitter has changed several times. I would hate to lose her.

After Mary left, Kate and I picked up the same photo book. We didn’t get far. She was tired and wanted to rest before going to dinner. At dinner, she expressed her desire to get to bed early multiple times. Instead, she became occupied with her iPad until 8:00 when I suggested she might go to bed. She was ready. When I joined her about 9:45, she was still awake. I’m not sure when she went to sleep. I know that I dosed off and woke a little later, and she was still awake.

I don’t know whether Kate remembered my name or our relationship the balance of the day. I know that she acted as though she did and didn’t ask my name again. It was a relaxing day, another day in which we enjoyed being together. I am happy to say that.

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Feelings of Insecurity and Appreciation

Yesterday was another of those days when I noticed more signs of Kate’s decline. She was especially dependent and cooperative in getting up and dressing. She was so cooperative that she was dressed and ready for the sitter in half the time or less. That turned out to be good because it enabled us to make a quick trip to Applebee’s for a gift card that the sitter uses to pay for Kate’s meal each Monday.

It was also a morning when she didn’t recognize me as her husband. She didn’t act surprised when I told her. She also didn’t remember her family. As we left the bedroom, I gave her the usual tour of the family photos in the hallway. We also looked at a few other pictures in the family room. As we went to the car, she became teary and thanked me for helping her. She tried to say more, but the words wouldn’t come to her. She suggested that I could say them better. I don’t remember exactly what I said, but it was something like, “You want me to know how much you appreciate my help.” She nodded. She started to cry, and we stood a moment in the garage hugging each other. These moments are not unusual. They are times when our hugs communicate our strong feelings for each other, but I always wonder what else they might say. I know that on my part they say, “I know our time is running out. I want you to know that I love you and will care for you all the way.” Is she thinking about the seriousness of her own condition? That she is worried? That she is losing her ability to express her feelings? That she is afraid of the future? I just don’t know.

When Cindy arrived, I told Kate that the two of them would be going to lunch and that I was going to Rotary. She didn’t look uneasy about that, but she did say, “Why can’t we go to lunch together?” Then she gave me a look that suggested she thought I was deserting her. I walked over and gave her a hug and said, “I love you.” She said, “I love you too.”

After getting home, we spent a few minutes looking at one of her photo books. It wasn’t long, however, before she said she was tired and wanted to rest. I left the sofa to her and took a seat in a chair across from her. I put on an album of Barbra Streisand favorites. In a little while, I heard her whimpering. I told her that if I had known the music would make her sad, I would have played something else. She said, “No, I like it.” She wanted me to come back to the sofa and sit with her. We sat there enjoying the music for another fifteen minutes until it was time for dinner.

Today is starting the same way.  While working on this post at 8:00 this morning, I saw that she was sitting up in bed. I went back to her. She seemed to recognize me, but nothing was said to make me sure. I know that she was quite comfortable with me. I said, “I bet you wanted to go to the bathroom.” She said, “Where is it?” I said, “I’ll show you.” I helped her up. She didn’t try to assert her independence. She extended her hands for me to assist her. She continued to hold my hand on the way to the bathroom. She said, “You know, I am sure glad you’re here.” I told her I was glad too.

When she finished washing her hands (arms and face) and brushing her teeth, she looked around for a towel but didn’t see it. I took it from the towel rack beside her and handed it to her. She said, “I’m glad I have you. You always seem to know what to do and what to say.” Then she said, “What do I do now?” I told her it was still early and that she could go back to bed. She asked me to show her where to go and asked me to take her hand.

After she had gotten into bed, I told her I would be in the kitchen and to call me if she needed anything else. She appeared to be uneasy about that and asked where the kitchen was. I asked if she would like me to stay with her. She said she would, so I went to the kitchen and brought my laptop. When I got back, she said, “It means a lot to me that you’re here.” I said, “I think we were meant to be together.” She said, “Me, too.” She followed that with, “What’s your name?” I told her, and then she asked her name. A few minutes later, she asked my name again and where we were.

It could be another day of insecurity, but based on previous experience, she could be quite different when she finally gets up. I am getting a better appreciation of what I have heard from other caregivers about the difficulty predicting what comes next.