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Yesterday: A Good Day

It was 7:25 yesterday morning. I had just finished my breakfast and about to take the dishes to the dishwasher. I glanced at the screen of the iPad that is connected to the video cam in our bedroom. Kate was about to sit up in bed. I went back to help her get to the bathroom. When I reached her, she gave me a smile but didn’t speak. I asked if I could help her. She said she didn’t know. I told her it was a beautiful morning and directed her attention out the window to the back yard. She must have been a little groggy because she didn’t respond as enthusiastically as usual. I asked if she wanted to go to the bathroom. She asked where it was, and I told her I would show her.

On the way, she said, “I know this is a nice place, but I want to go home.” Normally, I say something like, “I’ve got good news for you. We are at home.”  That has often worked before but not as much lately. I decided to redirect her attention and suggested we first get to the bathroom and then get dressed.

When we finished, she again mentioned wanting to go home. I told her we first needed to get her dressed. She was obviously eager to get home because getting dressed went more quickly than usual. I know that wanting to go home is a common request of people with dementia. Some authorities interpret it as an effort to escape from the symptoms of the disease. I have always been somewhat skeptical about this interpretation, but I do recognize that Kate has often said things that I believe are references to her Alzheimer’s. They include things like “I’ll be glad when this is over.” “I don’t like this. I know you don’t like it either.” Each time she says these things I try to figure out what she is talking about. I have never been able to identify anything specific. That makes me wonder if she is referring to her general feelings, difficulties, or confusion that accompany the disease. As I observe more of this, I am beginning to accept the idea that wanting to go home is, indeed, a desire to escape her Alzheimer’s and return to a place that symbolizes comfort and peace. What happened after we left the house might also support that idea.

The moment she walked into the family room, she showed her first signs enthusiasm for the day. She noticed a pot of African violets and one with orchids. She also did her usual scanning of the back yard followed by looking at her ceramic cat, the photo of her father, and the photo of our son. She experienced an almost immediate shift in mood.

We arrived at Panera just before 8:30, the earliest we have been there in quite some time. I set up her iPad and opened the puzzle app and then got her a drink and a muffin. By 9:30, she was frustrated over her puzzles and also tired. I asked if she would like to go home. She did.

As we drove to the house, I wondered if she had forgotten about her desire to “go home” or if going to our home would be perceived as going to the home she had talked about earlier. As we drove up to the house, I mentioned it was ours. She said, “Oh, yes. I didn’t recognize it at first.” That is quite unusual. She almost always does even though she sometimes thinks of as where we are staying or a house in which we previously lived.

Once inside she wanted to rest. I turned on some soft music and brought my laptop into the family room and sat with her until just before the sitter came. This was a rare time when she actually went to sleep. I wasn’t surprised because she had gotten up so much earlier than usual. I am sure she slept at least an hour. When she awoke, she looked over at me and smiled. She was very peaceful and happy. We communicate a lot with our facial expressions. I could tell from hers and her voice that all was well. She was at home.

We talked about how nice it was to relax with the music in the background. In a few minutes, I asked if she would like to look at one of her photo books. She did. I sat beside her on the sofa, and we spent ten or fifteen minutes doing that before she was tired again. She rested another thirty minutes before the sitter arrived.

I am always eager to see how she responds to the sitter. I was happy to see that she greeted Cindy with outstretched arms. It was like she had seen an old friend. As I left, I felt good knowing that she had moved so well from wanting to get out of the house and “go home” to having a peaceful morning.

The bonus of the day came when I got back. I found her and the Cindy were engaged in conversation. Kate was quite talkative. They were discussing plants. It isn’t often I see Kate as a major contributor to conversation. I think I was happier than she was.

She was tired at the end of the day and went to bed earlier than usual after being frustrated with her puzzles, but the two experiences of our morning together and her experience with the sitter made it another good day.

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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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Relaxed and Happy, But Confused

After Kate’s insecurity yesterday morning, I wondered what the rest of the day would be like. I’m happy to say that it was a very relaxing and peaceful day. I didn’t get her up until almost 11:15. Like the day before, she got up and dressed rather quickly. She was in a good mood and didn’t show any signs of confusion except for not knowing where the bathroom is located.

As we walked along the sidewalk outside the restaurant where we ate lunch, we passed a group of women who were having lunch after their weekly game of tennis. We see the almost every week and don’t know their names, but we always speak briefly when we are either going in or leaving. Kate was especially friendly. I don’t recall what Kate said, but it was something that I suspect made them wonder a little about her. I thought about giving them one of my Alzheimer’s cards but didn’t. I may do that another time.

When our server brought our drinks, Kate gave her a nice greeting and asked her name. She has done this the past couple of times she has served us. She not only asked but tried to repeat it but mispronounced it. The she asked the server to spell it. I informed the server about Kate’s diagnosis long ago or she might have wondered about her. As it was, I think she felt the way I did and appreciated the fact that Kate was interested in trying to learn her name.

We spent a quiet afternoon in our family room at home. Kate wanted to rest as soon as we walked in. Unlike most days, she went to sleep. I’m not sure how long, but she must have slept at least an hour. I sat across from her looking through a couple of catalogs and checking email. Periodically, I was out of the room briefly while I tended to washing clothes and watering plants.

Kate woke up and started looking at the back yard. From her position on the sofa she can see the tall trees behind our house. As usual, she remarked on how beautiful they are. In most ways, she was very relaxed and seemed perfectly normal. Then she pointed to the back yard and said, “I used to walk all around this place when I was a child.”

As I have noted many times before, she also busied herself by pulling strands of her hair starting at the scalp and moving to the ends when the hair falls from her fingers. She has acquired what I see as a more problematic habit recently. She deliberately puts saliva on her fingers and wipes it on her forehead and, sometimes, her arms. She takes both of these habits very seriously and often wants my attention to watch what she is doing. She believes both of these habits do something good. I’ve never understood what.

Later as I was coming inside after watering plants, she looked at me and said, “You and I went to school together.” I said, “Yes, we did. Do you know the name of the school?” She said, “Let me think.” When she couldn’t guess, I said, “TCU.” She said, “That’s right.” As far as I could tell this was the first time during the day that it was obvious she didn’t remember who I was. Of course, she slips in and out between knowing and not knowing very quickly. She can mention her mother’s name in one moment and ask her name in the next.

She had brief scare late in the afternoon when she came out of our bathroom. I had left momentarily to take a few things to the washer. I heard her say, “Hey” a couple of times before I got to her. She was greatly relieved to see me. Since she has become so dependent on me to tell her what to do or where to go, she is often afraid when she doesn’t know where I am.

It was also a day when, most of the time, she didn’t recognize that she was in our house. That happens regularly in the morning and did yesterday. Throughout the day and into the evening, she said things that indicated she thought she was some place other than home. Interestingly, sometimes she wanted to “get out of here.” Other times she commented on what a nice place it was. As we left for lunch, she said, “I feel really sad leaving here.” I told her we would be coming back after lunch. She felt better. Later as we left for dinner, we had a rerun of the same experience.

All in all, it was a nice day despite her confusion. My own assessment of how things are going continues to depend on how she responds to that confusion. I am able to accept the decline in her memory and the confusion she experiences so long as she is happy. Much of the reading I have done on the topic of caregiving emphasizes the importance of accepting the person for whom you care as she is and focusing on making life as fulfilling as it can be. That makes life better for everyone. I believe it.

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Insecure, Confused, but Happy and Appreciative

It would be quite an understatement to say that Kate is changing more now than at any other time since her diagnosis. Day before yesterday was a good example. Just as I have been adapting to her getting up late, she has surprised me several times over the past week. That morning she was up at 7:30. That’s at least three hours earlier than when I usually begin to wake her. It was also a day when she seemed comfortable with her surroundings. She acted like she knew I was her husband but didn’t. She was very dependent. She wanted my directions on almost every step from getting out of bed to where to go when I got her dressed. She was eager to have a shower, something I was happy about. She often resists.

We made it to Panera before 9:00 where she worked happily on her iPad an hour. Then I noticed that she was not working her puzzles, just sitting and looking a little discouraged. It was obvious she was frustrated. When I looked at what she had done, she had completed all but two pieces and couldn’t figure out where they went. I showed her, but she couldn’t understand. I put them in place for her. I felt sure that she was tired from having gotten up so early. It was early for lunch, but I decided it would be better than going home where she might nap and then have a hard time getting up.

She was quiet on the way to the restaurant. As I was helping her out of the car, she said, “I want to thank you. I feel better.” I told her I didn’t think I had done anything special but that I want to do anything I can to help her. She looked at me very seriously and said, “You do. You have no idea how much.” I am still not entirely sure what she was thinking about. It might have been the way I responded to her when she was frustrated over her puzzle. It could also have been that she imagined something as we were driving to the restaurant. As we walked to the entrance, she stopped as she always does to look and comment on the flowers just outside the door. When our server greeted her and asked her how she was doing, Kate said, “I’m doing much better now.” That’s exactly how it seemed. She was fine the rest of the day.

Eating early allowed us to get back with plenty of time before the sitter. I felt sure she would immediately head to the sofa for a nap. Instead she started working a puzzle on her iPad and continued until just before the sitter arrived. Then she decided to rest on the sofa. That’s where she was when Mary came. She greeted Mary with enthusiasm. When I told her I was leaving for my platelet donation, she smiled and said goodbye. She didn’t look at all unhappy to see me go.

When I returned, she was seated on the sofa looking at a photo book. She said, “We need you.” I took note of the fact that she said “we” and not “I.” Then Mary told me that she had not napped and explained that Kate had wanted to go outside. She stooped down to look at something in the yard or near a shrub, lost her balance, and couldn’t get up. Mary helped her but said it was difficult. I know what she means. I find that it is getting a bit challenging to get her into a sitting position when she is lying on the bed.

From what Mary told me, Kate had been a little upset and confused, but she was calm when I got home. The only problem then was that she was hot from being outside. I got out a small floor fan and used it to cool her off. Fifteen minutes later, she was fine again and ready for dinner.

At dinner we encountered something that is becoming a regular part of our dining experience now. She has difficulty knowing where she should sit. I always walk to her chair and pull it out from the table. I use my hand to direct her to the seat and say something like, “Sit right here.” Almost without exception, she interprets that as my chair and goes to the chair across the table from me. Sometimes I accept the chair she has chosen. When I have a specific reason for choosing a different chair, I may simply take her hand and guide her to the chair I selected. This, and the fact that she is very careful as she takes her seat, means that it takes longer for us to be seated than most hostesses are prepared for. Most of them seemed to be trained to remain at the table until you are seated. Of course, since we are regulars at all the places we visit, the hostesses are well aware of Kate’s diagnosis and are very understanding.

During dinner, Kate talked a good bit about what I do for her and how much she appreciated that. I told her our son was coming for a visit the next day. During our conversation, we spoke very naturally about our marriage. She commented on how happy we had been and then said, “What’s your name?” I told her, and she asked her own name. I am still amazed at how casually she does this. It’s the kind of experience that is both happy and sad. I am happy that she doesn’t seem frustrated, but it is also sad that she can’t remember. It makes me think about all the things she must not know if she is forgetting her own name and mine. What is it like to look around and not know who or what anything is? The good thing is that she still responds intuitively to people and things around her and still likes so many things. She continues to get pleasure out of life. That is something that may be hard for people without dementia to understand.

Later that night when we were in bed, she mentioned how good she feels when she is in Texas. I could tell by the way she said it that she thought she was in Texas at that moment. I didn’t say anything to dissuade her. She was happy. That’s a good way to end the day.

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A Happy Moment This Morning

For the second day in a row Kate was up early. Yesterday she was ready to get up around 9:00. Today it was only 7:30. This was one of those mornings she clearly did not realize she was in her own home or my name or relationship. Perhaps because she didn’t know who I was, she wasn’t quite as eager to have my help. Several times when I tried to help, she said (in an unflattering way), “You think you know how to do everything.”

She started warming up to me as I helped her dress. Entering the family room provided the catalyst she needed to feel better about the day. I walked with her around the room as we looked at the flowers inside and out. I told her I wanted to show her something and walked her to a photo of our son when he was about eight. She always loves this picture. Today was no exception. When she asked who he was, I told her he was our son. She reacted to the word “our” and said, “No.” I said, “Well, he is your son.” That was better. I also showed her a picture of her father.

From there we went into the kitchen where I had set out her meds. After she had taken them, she noticed a card on the island and asked what it was. It was a card from her P.E.O. sisters. I had shown it to her last night, but she had forgotten. I read it to her along with the handwritten message inside. She was touched, and tears filled her eyes. She loved the beauty of the cover page that had three hearts on it as well as the tender message itself and asked if she could take it with us. I told her that would be fine. It was still a few minutes before we left, but she held the card in her hand and admired it. She asked several other times if she could take it with us.

Once we were in the car, she held it against her breast and said, “I’m going to keep this forever.” She kept talking about how beautiful it was. As we walked from the car to Panera, she held it carefully in her hand and told me once again how much she liked it. I said, “I love you.” She said, “You know what I think. You’re a good guy, and I think I’ll learn to love you too.”

We took our table at Panera, and  she carefully placed the card standing upright so that she could look at it while eating her muffin and working on her iPad. A short time later she picked up the card and looked at it again. Knowing she wouldn’t be able to read the note, I asked if she would like me to read it for her. She did. When I read “Dear Kate,” she said, “How did they know my name?” I explained that she had been a member for many years and had served as president. She had no memory of that at all.

Incidentally, the blueberry muffin was also a big hit this morning. It was like this was the first time she had every had one. Thirty minutes after finishing it, she wanted something else. I asked if another muffin would be all right. She beamed. Thus far, the morning has been just another Happy Moment of many that she and I experience. She remembers very little, but she is not “suffering.”

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Happy Moments

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

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

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

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

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Is our glass “half-full” or is it “half-empty”?

When I began this journal (now a blog), I wanted to create an account of our lives since Kate’s diagnosis. That is the reason for my providing so much information about our daily activities. In a way, I wanted my posts to paint an accurate picture of the struggles we have faced and how we have adapted. Looking back, I think I was expecting more problems to deal with and fewer moments of happiness. As it has turned out, it is the “Happy Moments” rather than struggles that have filled our lives.

I often worry that whatever I say will lead some to believe that our lives are either “good” or “bad.” The reality is that our lives are a complicated mixture of both. Even now, the good far outweighs the bad. I do understand, however, that the way I have adapted to Kate’s changes permits me to see it that way. If I were looking at our lives today through the lens of 2011, I would be depressed. I am not depressed today. I have learned to appreciate many little things that I previously would have thought either insignificant or sad.

Let me give you a few examples of happy moments we have shared in the past few days. As we walked out of the bedroom the other day, she noticed a picture of our daughter, Jesse, in her wedding dress. It sits on the dresser, and Kate frequently stops to look at it. During the past two or three years, I don’t ever recall her recognizing that it is Jesse, but that doesn’t stop her from appreciating it. When I told her it was her daughter, she was moved to tears. She commented on the smile and her eyes, something that draws her attention in all photos. She asked her name. After I told her, she wanted to know more.

We spent at least five minutes or more looking at the picture. Then I told her we had a picture of Jesse’s twin boys in the family room and motioned her to follow me. This is another of her favorite pictures. She was thrilled to see it. She wanted to know their names. She got the impression they were her children. I told her they were Jesse’s boys. Then she wanted to know about their father. It wasn’t long before I was giving her far more information than she could digest. We went away without her ever having the understanding she wanted, but she had enjoyed herself. And I loved showing her the pictures. We do this regularly now. It’s not something we did much before, but it means much more to her now. I get a special kick out of her interpretation of the personal qualities of Jesse and the boys.

As we walked through the family room, she was captivated by the beauty of the flowering plants on the patio and the trees behind our property. She said hello to the ceramic cat that sits on the floor before we enter the kitchen. She looked at the photos of our son and her father that are also part of her daily ritual. This is always a good way to start the day.

During dinner, she said she wanted to tell me something. She said, “I know how much you do for me, and I want to thank you.” This began a series of comments that continued when we got in the car after dinner. She conveyed that she couldn’t live without me. She said some nice things about me to our server. As we left the restaurant, she said, “I wanted to tell you something else. I don’t know where all this is going. I wonder if we should get married.” I said, “I would love to marry you.” She said, “You would? That makes me happy.” I walked around my side of the car. We didn’t say anything more about marriage, but we talked about our relationship all the way home.

These are just a few of the many experiences we have on a daily basis. I would been sad if they had occurred eight years ago, but I have always wanted her to be happy. That is especially true now, and she is almost always happy. What I didn’t know then that I know now is that happiness is possible even after memory disappears, and I don’t have to look far to find things that make her happy.

I wish Kate had all of her rational abilities back – her memory for people, places, events and how to accomplish the many daily tasks of living. That’s not going to happen. From that standpoint, life is not going well for us now. On the other hand, being happy is of primary importance for both of us, so Kate and I would say that our glasses are still quite full.

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A Better Day, But Moments of Confusion

The way yesterday started was far better than the day before. I woke Kate just before 11:00. She smiled and was at ease. She was enjoying the music I had selected, but she wasn’t eager to get out of bed. Once she was up, everything went smoothly.

While we were eating, she said, “I don’t even know who my parents are?” She said this without any obvious sense of anxiety. It was said as though she were telling a friend about her having grown up without parents. As I told her about them, she was amazed and said, “I didn’t know any of this.” This conversation continued off and on throughout our meal.

We also had a slight rough spot during lunch as I was eating a bowl of tomato basil soup. When our server placed it on the table, she said the bread was better when dipped in the soup. Kate was eating bread at the time. I asked Kate if she would like to try it. She dipped her bread in the soup and then asked me to put some soup on her bread plate. I did, but she didn’t use it. Thinking she might not have noticed, I asked if she was going to dip her bread in it. She didn’t understand what I was talking about. I explained that she had asked me to put some soup on her plate for her bread, but she wasn’t using it as a dipping sauce. She felt as though I was scolding her, got a sad look on her face, and apologized. I told her she hadn’t done anything wrong; it was just a case of miscommunication. She was hurt, but it didn’t last long.

On the way home, she mentioned that she didn’t know her name. I told her and then mentioned her parents. She wanted to know their names. After telling her, she asked if I knew them. Then she asked if they knew her. I explained that they did and that they had loved her. Then she asked if she had ever known them. She showed none of the fright she had the previous day though she clearly conveyed a sense of regret about not remembering them.

She was tired when we got home and wanted to lie down as soon as we walked in the house. I got my laptop to jot down a few notes and sat in a chair across from her. In a few minutes, she began to cry. I walked over to her and asked what was wrong and if the tears were those of joy or sadness. The answer was joy. She said, “This is the first time I have ever really felt at home.” I didn’t push her to explain. I was just glad she was happy.

Before going to bed, she spent quite a while, at least twenty minutes flossing and brushing her teeth. She said she thought she needed to see a “doctor.” She feels something caught between her teeth and can’t get it out. I helped her floss but didn’t detect anything. I don’t know why, but I don’t see a dental appointment on my calendar. We always make one at the end of each visit. I’ll check on that this morning.

After she was in bed, she started pulling her hair as she does so often. It wasn’t long before she said, “Richard, (yes, she called me by name).” I said, “Yes.” She said, “I want to thank you for your patience.” I told her I was just happy to be able to help her. A few minutes later, she called my name again and said, “You know what makes it all worthwhile?” I said, “What?” She said, “You.” I said, “And you make my life complete. We made a good decision when we decided to get married.” In another few minutes, she said, “Hey!” I said, “What?” She said, “I’m glad to be here with you.” She repeated this five minutes later. This should give you a taste of one of the reasons I say that we have gotten along “remarkably well.” She is so appreciative, and I am working to be sure that she stays that way.

She was talkative when I joined her in bed. She continued to pull strands of hair for a long time. She said it was a lot of work to do this, but pays off in the end. She also talked about her teeth. She said it’s a small problem when compared with the big problems that so many other people face. She was very relaxed and happy. It was a great way to end the day.

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Kate’s Mood and Happy Moments

As Kate continues to exhibit more of the symptoms associated with dementia, I find myself entering a new phase myself. I’m not sure what to call it. I could say it is just adapting, but that isn’t precise enough. It involves accepting her decline for what it is – the loss of all her rational abilities. I can’t change that. I can feel sad as I often do, but I want to do something more constructive. That leaves me to focus on making her happy. I’m not always able to do that, at least in a very short span of time, but she is content and happy most of the time. That is particularly true after we get by the “waking up period.” That remains the most challenging time. In most cases, by lunch she is in a better mood. Afternoons and evenings almost always go well.

Yesterday was a perfect example. She was up before 8:30. She appeared to recognize me as her husband, but she was a bit confused about where we were. I had gone to her room when the video cam alerted me that she was beginning to get up. When I got to her, I said good morning and asked if I could help her. The first thing she said was, “Yes, get me out of here.” Then she said, “Where are we?” I told here we were in our house and that she would recognize it when she was a little more awake. She didn’t show any excitement or interest about being at home. She was still too confused for that and wasn’t in a happy mood.

After her trip to the bathroom, we went back to the bedroom to dress. She was very cooperative in getting dressed. She still shows some signs of independence, but she likes some kinds of help. She prefers that I put her socks on for her. I suspect that is motivated by convenience. She doesn’t have to lean down. She just sticks her feet out like a child, and I slip them on. When she has taken a shower she likes it when I help drying her back and legs and blow drying her hair. Sometimes she wants me to brush her hair as well.

When we were about to finish, she asked, “Who are you?” I gave her my name and said told her I was her husband. She didn’t believe that. I said, “Just think of me as a friend.” She liked that better. I brushed her hair. She thanked me. Then he said, “Of course, you get paid for this.” I said, “I do?” She said, “You should.” In a few minutes she made another reference to my being paid for helping her. Could she be thinking of me as a paid caregiver?

At lunch, she said something I thought was funny. Without making any reference to what we had said earlier, I asked if she knew how long we had been married, She immediately said, “Too long.” I said, “Good reply. You’re funny.” She said, “I learned it from you.” Her mood had changed. She was happy.

After lunch, she wanted to rest. That was no surprise since she had gotten up at 8:30. The sitter arrived while she was resting but not asleep. I didn’t say I was leaving until after Mary arrived. When I mentioned I was leaving for the Y, Kate didn’t act alarmed nor did she say anything like “Why don’t you stay with us?” She stood up and greeted Mary warmly.

When I returned, Kate was still on the sofa. She smiled when she saw me and was very happy. She told me she was glad to see me. I said I was glad to see her as well. After Mary was gone, she repeated multiple times how glad she was to see me. We got ready to leave for dinner. In the car, she again said she was glad to see me. By this time, she was in a very good mood. That continued for the balance of the evening. I didn’t have to work at keeping her happy. It’s just that rough edge that we sometimes have at the beginning of some days.

Her mood when she wakes is something I can’t control, but I can focus on what happens after that. So far, her mood has always improved in a relatively short period of time, and the afternoons and evenings are the most predictable Happy Moments. Maybe I should think of this as a “Mood Management Phase.” That’s what it’s all about now.

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Kate may be unsure of who I am, but she believes I am important to her.

I don’t have a clear idea how often Kate remembers that I am her husband. I know it is often enough that I have grown accustomed to her not remembering. For most caregivers this is one of the saddest things that happens as one’s spouse reaches the late stages of Alzheimer’s. That is particularly true the first few times it occurs. That has been my personal experience.

By now I have adapted and accept it. I take comfort in the fact that Kate still recognizes me as someone with whom she is familiar and is important to her. Not a day goes by without my having experiences that tell me that is so. Here are several that happened during the past forty-eight hours.

Night before last when I told her it was time to get ready for bed, she wanted to know where the bathroom was. During the past six months or so, I can’t remember a time when she didn’t ask me that. I led her to the bathroom and pointed out the toilet. I was about to leave her when she told me she wanted me to stay. This, too, is something that is becoming common. She is very unsure of what to do each step. She often asks me, “What next?” I stayed. Before washing her hands, she motioned me to come closer and whispered, “Does she know I’m a woman?” I told her I didn’t know who she was talking about but she and I were the only ones in the house. That worked; she didn’t say anything more. Sometimes she seems to recognize quickly that she has believed something that wasn’t so.

This was another time when she couldn’t understand my instructions about washing her hands. I put soap in her hands and washed them myself. This is just another illustration of her dependence. It’s not consistent, but it is increasing more rapidly than in the past.

After she was in bed, she told me that she was glad I was with her. She thought we were in a strange place and said it was a nice room, but she was feeling better knowing I was there. She began to “work” on her hair, pulling stands from her scalp to the ends. She asked me if it was all right for her to start on the right side and then do the left side of her head. I said, “That would be fine.”

I told her I was going to the family room for a few minutes and that I was not leaving her alone. As I started to walk out the door, she said, “What should I call you if I need you?” I told her my name was Richard. She said, “Okay, Mr. Richard.” I said, “You don’t have to call me mister. You can just call be Richard. She said, “What will he say?” I asked who she was talking about. She said, “You know – the other man.” I told her we were the only people in the house, and it was all right if she just called me Richard. She said, “Okay.” As you know this was far from the first time she had forgotten my name and no doubt our relationship, but over the past week this seems to have occurred for longer periods of time.

When I got into bed a little later, she was still awake. We talked for a few minutes. Then I told her I was going to sleep and said, “I love you.” She laughed. From past experience I knew that she didn’t realize that we are married, just friends. I said, “You usually say you love me too.” She said, “I’m not ready for that.” I said, “You would rather that we just be friends.” She said, “For right now anyway.” We talked a little longer. Then I told her I was ready to go to sleep. I paused and said, “Good night, I love you.” She laughed again.

Yesterday was a day for the sitter. I was relieved when she got up about 8:30. I didn’t have to worry about getting her up. She went back to bed after taking a shower. I let her stay there until 9:30 when I got her dressed. Then we went to Panera. I think this was the third or fourth time in about ten days. We arrived home just ahead of Sandy. I hadn’t said a word to Kate about my leaving. When I got my things together, I told her I was off to Rotary and the Y. She said, “How long are you going to be gone?” I told her it wouldn’t be long, that I was going to Rotary and then to the Y.” She said, “We’ll see.” She wasn’t making much of a protest, but I knew she wished I would stay.

When I go home, she was seated in a chair with her iPad, and Sandy was standing beside her. Kate said, “Oh, good.” It turned out that she had gotten into the store again and Sandy was about to help her get back to her puzzles. Sandy had probably helped her with this a number of times while I was gone. It happens frequently, and Sandy knows how to solve the problem.

Kate is almost always glad to see me. What was interesting this time was just how relieved she was. She breathed a very loud sigh of relief. Then she introduced me to Sandy as her cousin and said, “His name is Richard.” I was a bit surprised that she got my name right after slipping on our relationship. When Sandy left, she said, “I’m so glad to see you.”

Last night we had an experience like the one the previous night when she didn’t realize we were married. We were talking after I had gotten in bed. She said, “This is a nice room.” I said, “I think so too.” Then she said, “I’ve seen worse.” I chuckled. It wasn’t long before we said good night, and I said, “I love you.” Then we had a repeat of the previous night, but she did say, “You’re a nice guy. I like you a lot.” I said, “So you’re glad I’m here.” With emphasis, she said, “Definitely.” That will carry me a long way.