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Just Wondering

Yesterday morning I was happy to see Kate smile when I woke her for lunch. I told her it made my day to see that smile, and she beamed. Then I told her I would like to take her to lunch. As she started to get out of bed, she wanted to do it on her own without any help from me. Once she was on her feet, she had second thoughts. She extended her hand for me to guide her to the bathroom. It was the kind of moment I felt as though she knew my name and our relationship. Then she asked who I was. I gave her my name and said that I was her husband. She didn’t believe I was her husband, and I said, “Well, let’s say we are friends, very good friends.” She liked that. The balance of the day there were moments when I was sure that she knew me as her husband but many when she did not. She responded to me the same way regardless. In addition, she continued her expressions of appreciation for my taking care of her.

As I reflect on the day, I would say it was a very good day. She was just as confused as ever, but she was happy. What’s more I was happy along with her. I know, however, that many people would not understand this. For example, before Kate got up yesterday, I made up a Rotary meeting I had missed two weeks ago. As I watched from my computer, one of the club members gave an update on several older members and noted that one of them was “suffering with Alzheimer’s.” That is a frequently used way to say that  someone is “living with Alzheimer’s” or simply “has Alzheimer’s.” I know the speaker is probably not in touch with how the “Alzheimer’s community” (all people with dementia as well as those who are caregivers or professionals in the field) is beginning to talk about the way we refer to the disease. Many of those with dementia as well as professionals advocate our dropping the word “suffering” when we say that someone has the disease because it can be very misleading.

Speaking for myself, I find “suffering” not to be a good descriptor of Kate’s experience. There is no denying the changes in our lives that I wish hadn’t happened. Most of all I hate those moments of anxiety, fear, or panic that she has sometimes experienced. I feel similarly about all the moments when she recognizes that “something is wrong” with her. I wish she had never had Alzheimer’s, but that is clearly out of my hands.

The only thing that she and I can do is make the best of it, and I believe we have done that. We have kept our focus on what I call our Happy Moments. We take great satisfaction in them and try to put aside the sad ones; therefore, describing our lives as “suffering” doesn’t seem accurate at all. I do, however, wonder about the future. I’m not at all sure exactly what it holds for Kate or how I will respond. I am encouraged by the fact that each of us has been able to adapt thus far. I also know that my father managed well and took care of my mother to the end. He experienced a good bit of stress, but my load is and will continue to be easier than his because I have help and plan to increase it as needed.

Even if this last stage brings with it more sadness than happiness, I believe that saying someone is suffering from Alzheimer’s is not an accurate generalization. I think the emphasis on suffering can be discouraging to those who are recently diagnosed at a time when they need encouragement. The truth is that it is possible for a couple to live happily for years before they encounter the most challenging aspects of the disease. Based on the accounts written by other caregivers, I suspect that some of them may have received the diagnosis late in the disease. That left them with a shorter period of the “almost normal” years. During those years they no doubt realized they were happy but not that they were living happily with Alzheimer’s.

Lest I be guilty of making my own inaccurate generalizations, I should acknowledge that there are a variety of different types of dementia. Each can have different symptoms and time frames. In addition, there are differences from person to person within each type. I suspect suffering with dementia can occur among all types, but I think it is not usually an accurate description of the whole journey for those living with dementia. Furthermore, there are individual differences among caregivers in terms of how we perceive our situations. I admit to being the kind of person who sees the glass as “half-full” rather than “half-empty.”

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A Successful Evening at Casa Bella with a Emotional Finale

Last night was Opera Thursday at Casa Bella. As I have said before, their music nights have been very important to us both from an entertainment standpoint as well as socially. Recently, however, I have been concerned because we often have six and sometimes eight people at our table. Large groups are difficult for Kate. She does much better when we are with one other couple. That has led me to think about the possibility of our moving to a table by ourselves. I haven’t mentioned that to the owner of the restaurant, and the last time we were there everything was fine. Last night was even better.

Our seating arrangement varies a little from night to night depending on the number of people at the table. The men have followed an unspoken rule that our wives sit on the side of the table facing the singers while we have our backs to them. I started to seat Kate where she sits most often. She asked where I was going to sit. I pointed to the seat across from hers and said, “I’ll be right there across from you.” She said, “I want you to sit beside me.” This is in keeping with her increasing insecurity and desire to be with me and to hold my hand. Not wanting to take the seat of the woman who would be joining us later, I helped her into the seat beside me on the other side of the table. That meant she couldn’t easily see the singers, I felt the priority was being closer together. That turned out to be a good thing for two reasons.

First, the son of the couple we always sit with was there. He took a seat at the end of the table with his mother on his right and Kate on his left. His father took the seat across from me. Although Kate can never remember the couple, she always feels comfortable with them. They are always able to put her at ease. This made for a good social experience for her.

The second reason the seating worked out well related to Kate’s response to the music. As I have noted a number of times, her emotions are exaggerated more than in the past. The music was especially good, and Kate responded accordingly. Most of the evening she didn’t respond audibly the way she sometimes does, but she was visibly moved.

The most dramatic moment came during the last song of the last set when they often sing a few ballads or showtunes. Last night they ended with “For Good” from Wicked. In the musical, this is a duet sung by Glinda and Elphaba who tell each other their lives have been changed for good by the other.

Although Kate has difficulty following conversations, I am often surprised when she responds to specific words or phrases in songs. She picks up far more than I expect. In this case, I believe she was moved by both the music and the lyrics. She began to whimper very soon and held my hand throughout the song. During the last couple of stanzas, she was moved even more. As the song ended, she put her head on my shoulder and her arm around my neck and broke into a cry. She wasn’t loud, but people nearby would have easily noticed. As we hugged, I saw a couple at the table beside us who were looking on. They are aware of Kate’s diagnosis and have been very compassionate in their response to her. When the program ended, they came over and gave her a hug.

For me it was also an emotional moment. I can’t know exactly what she was thinking. I do know that she recognizes she has “a problem” and that she needs me. I know she understands certain words and phrases from songs. Did she understand the words of the song and draw a connection to our relationship? Was she simply moved by the music and not the lyrics? I only know it was an very emotional moment.

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A Day of Confusion, Not “Knowing,” and Insecurity

About 4:15 yesterday morning, Kate moved over very close to me. Then she took my hand and held it gently. I often wonder if she knows who I am when she wakes in the middle of the night. Neither of us said anything, but this was a time when I felt sure that she did.

I was wide awake and decided to get up at 4:45. After finishing in the bathroom, I walked toward my closet when I heard her say, “Hey.” I walked over to the bed and could see that she was having one of her moments of confusion. I asked if I could help her. She said, “I don’t know.” I said, “I bet I can. Were you wondering where you are?” She told me she was. I explained that we were at home. She had trouble believing that. I didn’t push it. She asked my name and then hers. She said, “Who are you?” I told her I was her husband. This was one of those times when she didn’t express any doubt or say, “How did that happen?” I told her we had been happily married for fifty-six years and that I loved her. She said she loved me too.

We talked a little longer, and I asked again if there were anything specific I could help her with. She wanted to go to the bathroom. As she got out of bed, she was shaking a little. She held my hand and said, “I’m sure glad I have you.” I said, “And I’m glad I have you.” When she finished in the bathroom, she said, “What now?” I told her it was early and I thought she should go back to bed. After walking her to bed, I was about to ask if she would like me to stay with her when she asked me to stay. We talked about fifteen minutes. During that time, she was very insecure and expressed her feelings about feeling better with me. Then she said, “I’m all right now. You can go.” I told her to call me if she needed me. She said, “What should I say?” I told her she could just say, “Hey.” She wanted to know my name. When I told her, she said, “Okay, Mr. Richard.”

We had a nice relaxing day. It was Labor Day. My Rotary club did not meet, and I gave the sitter the day off. Most of our usual restaurants were closed, so we went to one we like but rarely visit. Then we came back home for the afternoon. Kate was very tired and rested for at least two hours but did not go to sleep. When she sat up, I asked if she would like to go someplace like Barnes & Noble. She said she would rather stay at home. That is now becoming a more established pattern. It doesn’t seem that long ago that we went out almost every afternoon. That is another change that has cut down on our social contact. That means our eating out is becoming more important for us.

Since she didn’t want to leave the house, I suggested we look at an old photo album I had retrieved from a closet the day before. It has pictures of our children at the time of our son’s birth. It had been a very long time (years) since we had looked at them. We spent another hour with it. Kate loved every minute. As she has done with the other family photo books, Kate can never make the associations that would help her guess who the people are. For example, after I identified Jesse and Kevin in one photograph and pointed out Jesse in the following picture, she didn’t know who the boy was even when they were dressed in the same clothes as the previous photo. I don’t mean that this happens every time, but it is very common.

Before leaving for dinner, she said something that reinforces my belief that she recognizes that she has a significant “problem” and depends on me. She struggled with how to say it and ended up saying something like, “I know my problem is not that serious, but I appreciate your taking such good care of me.”

Throughout the entire day she seemed very insecure. She expressed that by her thanking me for taking care of her and asking what she should do somewhat more than during a typical day. As I have said before, her neediness and expressions of appreciation make me more determined to keep her happy and see that the rest of her life goes as smoothly as it can.

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Thinking About Stress: Part 2

In yesterday’s post on stress, I discussed two aspects of caregiving that I believe influence the degree of stress that I and other caregivers experience. My intention was to convey why I believe my stress is less than that of other caregivers. In my earlier post, I suggested that my caregiving load has been comparatively light and that my prior caregiving experience as well as my personal characteristics have enabled me to cope with the challenges I have faced. Today I focus on the ways in which I have been able to minimize stress. I am fortunate to have a variety of ways to address the problem, and I depend on all of them.

Binging on music and eating out are unquestionably my best ways to manage stress. I have written extensively about both of these and won’t say more about them here, but they have been great therapy for Kate as well as for me. They have provided us with pleasure and kept us socially engaged. We are fortunate to share these interests. That is not true for every couple.

Exercise has been a part of my life for a long time. Although caregiving has changed that somewhat, it still is an important part of my life. As I became less comfortable leaving Kate alone, I engaged a sitter three afternoons a week so that I could continue going to the Y as well as doing other things cited below. I reduced the amount of time spent at the Y but added a 40-minute walk every morning.

Reading is another of my pleasures. Before my retirement, I focused on my career. Much of my reading then was influenced by my professional interests Since then I have broadened my reading substantially. After Kate’s diagnosis, I opened an account with Audible and get two books a month. I listen to books while I am at the Y and when I walk in the morning. I like being able to accomplish two tasks at one time. I also read some on my iPad. I wanted to learn more about the experiences of other caregivers and began to read books they as well as people with dementia have written. I have read over thirty of these.

I have participated in voluntary organizations for most of my life. As a caregiver, I have had to reduce that, but I fit some in my schedule. I’ve been a Rotarian for 36 years. I currently co-chair our CART Committee that collects weekly contributions from our membership for Alzheimer’s research. I have been active with United Way for 35 years and serve on two of their committees. Although I no longer serve on the board, I maintain contact with a local hospital foundation that raises funds for the area’s largest hospital system. Until three years ago, I was still active in our church. Now my only involvement is serving on a committee that calls church members on their birthdays. The pastoral staff has remained in contact with me. Kate and I have lunched with three of the pastors, most frequently with our senior pastor with whom we had such a good experience this past week. He was the first person to approach me with a concern about Kate. That was July 2011, six months after her diagnosis. They have definitely stayed in touch.

I also meet with friends for coffee. Mark Harrington and I get together each Friday afternoon for over an hour at Starbucks. I also have a church friend I meet at Panera about once a month.

Email contacts have also been important. In particular, I am in daily contact with two college friends. In the past, we could easily have over twenty messages a day. Our correspondence not as frequent now, but rarely does a day go by without several messages.

For many years, we have had good friends in Nashville. We have a long history of daytrips to visit friends. We have continued those visits since Kate’s diagnosis. One of those is Kate’s closest friend who is now in memory care following a stroke four years ago. We try to visit with her every four or five weeks. In connection with that visit, we often get together with another of our Nashville friends.

I launched this blog and opened a Twitter account in January 2018. These have opened up an entirely new avenue for minimizing stress. They have helped in two ways. First, they provide new activities that I can do right from home. Second, they have enabled me to make new online friends that have been very supportive. I have learned much from them.

All of these activities have kept me active and provided different ways for me to be socially engaged. I expect my stress is likely to increase in the future. That’s because Kate is requiring more personal care than in the past. Up until now, I have had sufficient time for the personal things I like to do. In addition, most of our time together is spent doing things we both enjoy.

The major part of my stress doesn’t arise from my direct caregiving responsibilities. It comes from the sadness I feel as I watch Kate’s decline. Although I can’t predict the timing or all the specific things we are likely to encounter, I know all too well where we are headed. As we move forward, I intend to do what I have done in the past. I’ll take great pleasure in our Happy Moments and enjoy the satisfaction of keeping her as happy and secure as I can. I feel it’s a privilege to walk with her through this last chapter of her life.

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Thinking about Stress: Part 1

There is no question that caring for a loved one can, and often does, cause a good deal of stress. Judging by the frequency with which people remind me to take care of myself, caregiver stress seems to be common knowledge. I find, however, that the degree of stress can vary tremendously from one person to another. I don’t think that variation is well understood.

That leads me to a favorite topic of mine: generalizations. All of us depend heavily on them. They are often very useful; however, applying a general pattern to a specific situation (in this case, the stress of an individual caregiver) calls for more detailed information about the specific caregiver and her/his situation.

I usually think about three major elements that play a role in stress experienced by a specific caregiver like myself. One is the sources of stress. Some things produce a lot of stress. Others produce very little. A second category is the personal experience and characteristics  of the caregiver. Some people find it difficult to deal with stress. Others find it less so. The third category involves the things a caregiver can do to reduce or minimize stress. In today’s post and the one following, I would like to comment on how those three come together in my particular case.

As Kate’s care partner I have experienced stress, and that stress has increased as her Alzheimer’s has progressed. As I look to the future, I believe that stress will likely increase. On the other hand, stress seems to be less of a problem for me than for many others. I say that based on reading a variety of online forums for caregivers as well as over thirty books by caregivers who have provided vivid accounts of their experiences. When I consider what they have been through, I see good reasons for my feeling less stress, and the three elements I mentioned above provide an explanation. In this post, I will deal with two of them.

Sources of Stress

All stressors are not equal. The ones I confront are minimal compared to those of other caregivers. The load I carry is simply not as great as that of theirs.

In the first place, I was at a point in my career when I could retire to devote my attention to Kate. Many caregivers have a variety of other responsibilities that also demand their attention. I am especially mindful of spouses who have to continue working to pay the bills and can’t afford to hire someone to help. There are many women who are not only working and caring for one or both parents but also care for children. I am familiar with their stories and recognize the struggles they are facing.

Kate has also been easier to care for than many other people with dementia. It is true that she has been somewhat more irritable, especially as the disease has progressed, but that pales in comparison to other situations with which I am familiar.

In addition, neither Kate nor I has had to deal with any other serious illnesses. That is unusual for people our age. We are approaching eighty, and Alzheimer’s is the only significant health issue for us. I have been sensitized to this fact when Kate has had a cold. That creates an extra demand for me, but it is nothing compared to other chronic illnesses.

Personal Experience/Characteristics of the Caregiver

Many caregivers for a person with dementia have little experience with the disease. They begin from scratch. Often, they are children caring for one or both parents. They face a steep learning curve that calls for knowledge of the disease itself while adjusting to the new role of parent care. This has to be incredibly stressful.

Kate and I had been caring for our parents and my father’s significant other for twenty-two years at the time of her diagnosis. Her father had a stroke and her mother vascular dementia. My mother had an unspecified form of dementia; my dad’s significant other had vascular dementia, and my father had a stroke. I feel as though everything I had learned from those experiences prepared me to care for Kate.

I also believe my personality makes caregiving easier for me than for others. I can’t take credit for that. I thank my dad. He was the same way. He kept his sense of humor and focused on everything he could see as positive and minimized the negative. He was a problem solver in his work and in his personal life. He had faith there was a solution to every problem he encountered. I think I am a bit more realistic than he was, but I recognize many ways in which he and I are similar.

If it were only the things I have outlined above, I believe my stress would have been less than that of other caregivers, but there is more. It involves the variety of ways in which I have been able to minimize my stress. I’ll save that for another day.

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This Morning’s Experience of “Knowing” but “Not Knowing”

Some time ago (February 18, 2018) I wrote a post entitled “What does it mean to know someone?” The answer to that question is much more complex than it sounds. I see that all the time with Kate. Like other care partners, I am very sensitive to those times when Kate knows or seems not to know me. I tend to put her level of knowing in four categories.

  1. She knows me in all the traditional ways a wife knows her husband. She knows my name, that I am her husband, and has a feeling of affection/kinship for me.
  2. She knows either my name or that I am her husband (usually the latter) and has a feeling of affection/kinship for me.
  3. She knows neither my name nor that I am her husband, but has a feeling that I am someone familiar and whom she trusts.
  4. She has no idea who I am.

I can’t put an accurate estimate on the frequency with which she experiences these categories. I do know that Category 4 is the least frequent by far. There have only been a handful of times in which she has had no idea who I am. Category 1 occurs infrequently but much more than Category 4.

That leaves the other two categories that occur most often. I’m not sure, but I think we are at a time when Category 3 is, or is becoming, the most common. Most of the time she knows me as someone familiar and whom she trusts.

I know there must be caregivers who find it disturbing when their loved ones no longer remember their names or relationships, but I find that leaves me with the most important connection that we have and have always had. Like most other couples we were attracted to each other from our first date, perhaps even before or there might not have been a first date. After all our experiences and changes in our lives, this sense remains. I am optimistic that it will continue though I recognize that, too, may give way to this disease called Alzheimer’s. In the meantime, I am going to relish moments like this morning. In the scheme of things, it wasn’t significant, but it meant something to me.

I was just finishing breakfast when I noticed on the video cam that Kate was about to get up to go to the bathroom. I went to the bedroom and could tell this was a morning when she was confused. Unlike other times, she seemed very normal in terms of her emotion. She showed no signs of anxiety or fear though I feel sure she was feeling anxiety. In a very natural tone of voice she said, “What’s going on?” I said, “Well, you just woke up, and you are in your own house. That’s your back yard that you like to look out on each morning.” She said she recognized it.

Then she said, “What now?” I said, “I think you were about to get up to go to the bathroom.” She said, “I think I was. Where is it?” I said, “Let me show you.” I took her hand. She held it all the way. That’s not something she always does. As we walked, she said, “Who are you?” I said, “I am Richard, and I am your husband.” She didn’t act surprised nor elated. She just accepted that as a label for me.

After using the toilet and washing her hands, she said, “I wish I could just be with you and nobody else.” I said, “You are. This is our house, and there’s nobody else her but us.” She seemed to like that but didn’t express any special emotion at all. She said, “What now?” I said, “You usually like to go back to bed for a while.” She said that is what she wanted to do. She said, “Who are you?” I told her again and noticed that she seemed just a bit uneasy and asked, “Would you like for me to stay in here with you?” She did, and I told her I would get my laptop and come back to the room. She said, “Don’t leave me. Take me with you.” I told her I would; however, by the time we reached the end of the bed, she had forgotten and walked toward her side of the bed.

After she was in bed, I asked if she would like me to stay in the room with her. She did. I remained with her. She fell asleep. Thirty minutes later I came back to the kitchen (my office) to write this post.

This was one of those times she didn’t know my name or our relationship, but she had a good feeling about me and trusted me. That is what is most important to me. It reinforces my desire to keep her secure and happy, and she almost always is.

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A Couple of Unpleasant Moments, But a Good Day

Yesterday was a beautiful example of our mixture of good and bad moments. We got off to a good start when Kate woke up before 8:00 to go to the bathroom. She was confused, but she seemed to be in a good mood. Several times she asked where she was and why she was there. When I got her back in bed, I told her I would be in the kitchen if she needed me. She looked frightened and said, “Don’t leave me.” I got my laptop and brought it back to the bedroom where I stayed for about an hour. She was awake a good bit of that time and periodically talked about how glad she was that I was with her. Finally, she fell asleep, and I went back to the kitchen.

A little over an hour passed. I decided it was time to get her ready for the day. I had an 11:30 appointment for my labs before seeing my doctor for a checkup on tomorrow. She got up easily. Then she took a shower and got dressed.

She was fine the rest of the day. After our short visit to the doctor’s office, we went to lunch. She was talkative. We both enjoyed ourselves. We returned to the house for an hour before going for our hair appointments at 3:00. After that, we spent another hour at home before leaving for dinner.

During that time, Kate spent a while going through a book of “word searches” that I had bought for her about six months ago. She has never been able understand the concept that you look at the rows and columns of letters and try to find the words that match the topic for a particular one (Bugs or Islands or Weather, etc.). Yesterday she enjoyed looking through it and created her own explanation of what it was about. I didn’t understand it, but she thought it was something that we could give to trick or treaters at Halloween. I didn’t try to get her to explain. I knew that would be impossible. I was just glad that she found pleasure in looking through it.

After dinner, she worked on her iPad for a longer period of time. She was so engrossed that when I suggested we go back to the bedroom and get ready for bed, she didn’t move. I told her I was going to take my shower and encouraged her to come to the bedroom. She reluctantly agreed.

I put on a YouTube video of an Andre Rieu concert earlier this year while I showered. When I got out she was still working on her iPad. Everything was going smoothly. When I got out of the shower I told her it was getting time for bed. I put the night gown out for her. I try to give her a chance to do this by herself. She prefers this, but often runs into a problem. That was true last night. She asked me to help. That went smoothly, but in the process of getting her to the bathroom, brushing her teeth, and taking her nightly meds, I rushed her. She was angry. That is not something that I am accustomed to seeing. She said, “You just want to control everything I do.”

I realized I had stepped over the line and apologized to her. I told her I really wanted to help her but realized that I can go too far. She began to cry and apologized to me. The crisis was over in just a minute or two, but it made a big impression on me. This was not like anything we have experienced before. Neither one of us likes conflict, and we both work to avoid it.

With that behind us, I helped her into bed and went over to the chair on my side of the bed. I put on some music and was prepared to read for a while as I usually do after she is in bed. This time she wanted me to come to bed with her. I turned off the light and joined her. She said she felt better if I was with her. We didn’t talk much. She began to relax, and we both went to sleep.

As I do so often, I wonder what is going on inside her brain. I recognize that it is possible to calm her. Playing music, being with her, and talking slowly helps her relax. I know that when I rush her, I am asking for trouble. She also has times when she is anxious or afraid. I think the fact that so much of what we do keeps her focused on enjoying the moment that she doesn’t normally feel  anxious. When she first wakes up in the morning, the memory of all the good things we did the day before are gone. She doesn’t know anything. I think I can understand that. I would probably be anxious myself. I also know that I don’t like to be rushed and work hard to avoid it. She is unable to take the steps to avoid being rushed. It takes an external source to do that. I am it, but I have to be very careful to get her ready without her feeling rushed. That is harder now than it has been in the past.

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Transitioning from Husband to Helper

Kate surprised me yesterday when she got up early again. I reached her as she sat on the side of the bed. I asked if she was getting up. She said, “I don’t know.” We chatted briefly, and then I asked if she would like to get up. Again, she didn’t know. She said, “What do you think I should do?” I told her I thought it would be good for her to get up and take a shower. She asked where the bathroom was. I told her I would show her.

On the way she asked, “Who are you?” I told her I was Richard and could help her with anything she needed. She said, “You really seem to know your way around.” I turned on the shower and showed her the soap. As she got in the shower, she asked who I was. I said, “I am Richard, and I am your helper.” She asked what I did before becoming her helper. I told her I was retired. She said, “From what?” I told her I had been in the market research business. She said, “What’s that?” I explained briefly. As I closed the shower door, she thanked me. It didn’t sound the way she would have said it if she realized I was her husband. It was more like what you would expect if she thought I was a friend or hired helper. After her shower, she walked a few steps to the bedroom. I told her I would get an extra towel and help dry her. She said, “You really know everything.”

It wasn’t long before she wanted to lie down again. I started to leave for the kitchen. She said, “Why don’t you stay right here?” I said, “Would you feel better if I stayed with you?” She said she would, and I brought my laptop back to the bedroom. About thirty minutes later, she wanted to get up.

Once she was dressed, she wanted her shoes and socks. I picked them up from the floor near her feet. She said, “You think of everything.” Then she asked where I live. I said, “I live right here with you.”

Gradually she is failing to recognize me as her husband. I haven’t reached the stage of never telling her, but I am gradually changing with her. My obvious role is that of helper. I don’t think that’s a bad way for her to think of me.

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

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

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

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

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

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

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

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

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Early Morning Conversation

Kate wanted to go to the bathroom just before 6:00 this morning. As I took her back to bed, she said, “You’re a nice guy. What’s your name?” I said, “Richard.” I helped her in the bed. She said, “I want to thank you. You’re a really nice guy.” I said, “That’s because you’re a really nice gal. I love you.” She said, “I love you too. We’re a good ‘two.’ (I think she meant team. That is something we often say.) <pause> What’s your name?” I said, “Richard.” She said, “What’s my name?”

No wonder I want to do the best I can for her. We love each other, and she needs me.