Morning Crisis

Yesterday, like a number of days recently, Kate was up at 7:30. That meant I didn’t get my normal walk, nor did I have time to upload a new post. This morning I was up at 5:20. I thought this would be a good opportunity to write a post about an experience we had last night. My plans changed quickly. I was about to walk out of the bedroom when I noticed that Kate was awake. I walked over to the bed to let her know I was going to the kitchen to fix my breakfast. When I reached the bed beside her, I recognized the look on her face. I said, “Are you afraid?” She nodded. I told her I could help her and that she was going to be all right? Then I said, “Would you like me to stay with you?” She said, “Oh, yes.”

She wanted to go to the bathroom. As I helped her up, she said, “You’re very nice to me. You’re the only one I can talk to.” I wasn’t sure if she knew who I was and said, “My name is Richard.” She said, “I know that. <pause> What’s your name?”

After using the toilet, she wanted to brush her teeth. I asked if she were still afraid. She said she was. I asked what she was afraid of. She said, “I don’t know. I don’t know what to do?” She talked a couple of minutes about that and said things like “I don’t know what’s going to happen to all of us.” “I just want to get out of here. I don’t really mean that, but . . .” (She didn’t finish.) “Thank you for helping me. You’re the only one I can talk to.”

I assured her that I could help her, that she could depend on me. I said, “Right now, I think you need to get back in bed and rest. We’re going to have a very nice day.” I started to leave for the kitchen for my computer, and she said, “Please stay with me.” I told her I was just getting my things from the kitchen and would be right back.

As you might expect, I turned on some soft soothing music and sat in the chair beside the bed. It wasn’t long before she was asleep.” I began to think about leaving to fix my breakfast, when she awoke and saw me. She had a smile on her face and said, “You’re here. How nice.” She seemed like herself, but now I feel I should stay a while longer. At least for now, the crisis is over.

Alzheimer’s Doesn’t Know It’s a Holiday, But We Do.

Kate and I talk a lot about the many things for which we are grateful. We’ll do more of that today. Let me say first that I am grateful to those of you who take time to read my often rambling accounts of our lives. I hope it provides an accurate glimpse of what “Living with Alzheimer’s” is like for us and that you may be gaining a little insight into the world of Alzheimer’s. The overriding message for us is how well we have gotten along. That easily claims first place among the things for which I feel most fortunate. I only wish that could be true for everyone who lives with this disease, but I am very mindful that others face far greater challenges than we have.

I am grateful for the kindness of family, friends and acquaintances who provide support, often without realizing it. I have also been touched by those who serve us in restaurants and customers in places we visit. Just this week I took Kate to the restroom at lunch. I’m always a little concerned in these situations because she has on several occasions locked a door to the stall or the restroom itself and been unable to open it. Sometimes she doesn’t know where to go once she is in the restroom or how to find the exit door. That day I opened the door and peaked in to see if anyone else might be in there. A lady was washing her hands. I pointed Kate in the direction of the stall and told her I would be right outside the door. It wasn’t long before the door opened and the lady who had been washing her hands invited me in. She told me she was a nurse and would stay with Kate. That wasn’t the first time people have helped in that situation. Little gestures like that have made the road smoother for us, at least emotionally.

It is a beautiful day. The sun is shining, and the today’s temperature will be in the low 60s. I look forward to this day with Kate. It will be the first we celebrate alone. Now don’t feel sorry for us. We will certainly miss being with family, but it will be easier on both of us that we are not traveling or hosting this year. I have an increasing recognition that our time together is limited, and I treasure the good times that we have when it is just the two of us.

Now let me segue to another aspect of our lives. Although we have many “Happy Moments,” they vacillate with more trying ones. Thus far, we have been able to handle each one of those. That includes one we had early this morning.

At 3:00, Kate said, “How do I get inside?” I said, “You’re inside right now. You’re in your own bed.” She wasn’t buying that. She asked again. I said told her I would show her but that it was the middle of the night and thought it would be better to do that in the morning. That wasn’t of any help. Then I told her I would show her. The first stop was the bathroom. Then we walked hand-in-hand through the bedroom, down the hallway outside our room, into the family room and kitchen, stopping in the laundry room. During our walk I tried to comfort her. She kept asking if we were going inside. I assured her that I was taking her inside. I turned her around and we walked back to our bedroom where I helped her into bed.

As I pulled the covers over her, she said, “You’re not going to leave me, are you?” I told her I would never leave her and that I would be right there on the other side of her. When I turned around to walk to the other side of the bed, she must have thought I was leaving. She said, “Don’t leave me.” She seemed very frightened. That didn’t stop immediately. I got into bed, moved close to her, and put my arms around her. She gradually felt at ease. By that time it was about 4:10. She was quiet until 4:30 when she asked again not to leave her. I assured her I wouldn’t, and I didn’t hear anything more from her. I think I went to sleep pretty shortly after that. I know I slept until 6:50 which is unusually late for me, but I know I needed it.

My best wishes for a Happy Thanksgiving to each of you.

Dependence and Anxiety

Kate’s dependence on me continues to increase. That is particularly true in the morning when she wakes up. The way I explain it is that all of the circuits in her brain shut down as she sleeps. When she awakes, they start to connect again. Her memory fails, and she can’t make sense of where she is. Some mornings it is much worse than others. That can lead to anxiety as it did yesterday and today.

Day before yesterday, as she has done frequently in recent days, she got up to use the bathroom around 6:30. She needed my help getting to the bathroom and back, but that was no different from other mornings. Around 10:30, I noticed on the video cam that it looked like she was about to get up. When I got to the bedroom, she was still lying down. She looked frightened. I asked if I could help her. She said, “I don’t know.” That is a frequent answer when the only thing she knows is that she doesn’t know “anything – where she is, who she is, etc. In moments like these I assume that she doesn’t remember my name or our relationship. I focus on trying to comfort her and relieve her anxiety. I sat down on the bed beside her and said, “I am here to help you with whatever you need.” She said, “What do I do?” I explained that she it was about the time she usually got up to dress and that we could go to lunch together.

I got her up, and we went to the bathroom to brush her teeth. As we walked, she shook with fright. I assured her she was going to be all right and that I would be with her. She held my hand very tightly. When we got to the sink, I started to put toothpaste on her toothbrush. She snapped at me saying, “I can still do some things by myself.” She quickly apologized for talking to me that way. Then she said something I can’t remember, but I took the meaning to be “I just want to be myself again.”

That and a similar comment she made while dressing confirmed the suspicions I have had for some time. Her self-awareness is still strong. She knows she has a serious problem and at times like that it is painfully frightening. What she doesn’t know is that she has Alzheimer’s, and that she is not going to improve.

I told her I would be able to help her. Then I relied on diversion once again. It has worked well in the past. It worked again this time. I repeated my usual routine. I showed her photos of her mother and grandmother in our hallway. Then we walked to the family room and let her respond to the flowers, photos, and all the greenery behind our house. She recovered and was fine the rest of the day.

Yesterday I forgot to turn on the iPad I use to monitor the video cam until I was about to serve up my breakfast. When I did, I saw that the door to the bathroom was closed. I got to the bedroom as she was just coming out. She was not as disturbed as she was the day before, but she was certainly uneasy. I helped her back to bed, and she thanked me. Then she said, “I feel better knowing you are here.” I said, “Would you like me to bring my things back here and stay with you?” She did, and I stayed until it was time to get her up for lunch. She slept about an hour and a half. Then I saw her running her fingers through her hair. I had music playing softly. She was very peaceful.

These two experiences are unusual, but her dependence on me steadily increases. It’s expressed in little things like wanting to hold my hand while we are walking. I’ve grown accustomed to hearing her say, “Take my hand.” or “Hand.” She also says things that more directly communicate that dependence. Yesterday, for example, she said, “I don’t feel scared when I am with you.”

I will report on the rest of the day in my next post.

More Confusion and Confusion

Shortly after midnight last night, Kate and I had what was almost a replay of a conversation we had yesterday morning. I had gotten up to go to the bathroom. When I got back in bed, I noticed that she was awake. She said, “Where are we?” That began another conversation that lasted until 1:35. She said she didn’t know anything. As I had done the night before, I said, “That must be scary.” She said, “Very.” From there I gave her my name and hers and our relationship. I followed that by lots of the same family information I had given the last time.

Several times she said, “I don’t understand why this is happening.” I told her I didn’t either but that it had happened other times and that she improved as we talked about our lives and family. This conversation was unusual in that she was able to grasp the change in her memory (or the way she felt) as I fed her information. At one point, I asked if I was overwhelming her. She said, “No, I can tell it’s helping.” She suggested that she was remembering a few things and that made her optimistic that her memory would come back. It’s been close to a year since she had her first experience like this.

At that time, it brought about a more intense emotional response. I described it as a “panic” or “anxiety” attack. This morning’s experience was not nearly as intense, but it had an element I had not heard since last summer. She made reference to her doctor’s telling her she might get better. She said the doctor also indicated that she might not. Nonetheless, she was encouraged last night. She also talked about the support she had received from friends. This time, however, she mentioned that her memory might not come back “all the way.” I told her no matter what I would be with her to help. We both said that whatever happens, we would deal with the situation, that we were good at adapting.

The conversation ended when she said, “I think I’ll go back to sleep now.” I asked if she felt relaxed. She said she did. The crisis was over. What is lingering in my mind now is that she seems to grasp that she has something that she won’t be able to conquer. She may improve, but the problem won’t go away. Once again, her intuitive thought processes are working. She doesn’t have a name for it or understand a way to beat it, but she knows something is wrong.

Just before 9:00 this morning, I saw on the video cam that she was starting to sit up in bed. I went to her. She smiled, and I walked over to the bed and sat down beside her. I was expecting that she would be back to normal again. She wasn’t. She was just as confused as she was earlier this morning. The difference was that she wasn’t in the mood to talk about what she was experiencing. She kept saying (not in rapid succession), “I don’t know what to do.” I asked if she would like to go to the bathroom. She asked why. I told her that she usually wanted to go to the bathroom when she woke up about this time. She repeated that she didn’t know what to do. I tried the same approach that had been successful in our two previous midnight conversations. She didn’t seem to pay attention. I think she was still tired and wanted to go back to sleep. I asked if she would like to see some pictures of her family. She didn’t, but I showed her a wedding photo of our daughter and brought in the “Big Sister” album to the the cover photo. She responded with a smile when she saw it, but she wasn’t ready to look at anything else. I asked if she wanted to rest a while longer. She nodded. I asked if she would like me to stay in the room with her. She did. That’s where I am right now. She opened her eyes a few minutes ago but is asleep again. We have a 12:30 reservation for lunch. I think I’ll let her sleep until 11:00 or 11:30 before waking her unless she gets up on her own.

I don’t like all the signs I have seen over the past week or two. This isn’t a change for the better.

Another Anxiety Attack

In the past I’ve suggested that it is hard to predict exactly what lies ahead in our future. That is true for everyone, but it seems to be especially noticeable in the lives of people living with Alzheimer’s. It certainly is for us. I was reminded of that around 6:30 this morning. I had just gotten up and entered our bathroom when I heard Kate say, “Hey.” I opened the bathroom door and saw that she was sitting up in bed looking at me. She looked as if something were wrong. I asked if she were all right. She said, “I don’t know. I want to go to the bathroom.” She was shaking and uneasy on her feet. She held my hand most of the way to the bathroom before she felt secure enough to let go. On the way, she asked, “Where are we?” I told her we were at our own home in Knoxville.

When she got up from the toilet, she wanted to brush her teeth. As she walked to the sink, she said, “I’m not myself.” She repeated that several times over the next few minutes. She finished brushing and said, “I’ll be glad when this is all over.” I’ve heard her say this several times in the past and don’t know what she means. I’ve asked before though not this time. She always says, “You know.” Over the next few minutes she said, “I’m not myself. I don’t know what’s going on with me.” I can’t remember what it was, but she said something else that was a clear recognition that something is wrong with her.

I took the approach of comforting her without any attempted explanations. When she said, “I’m not myself,” I said, “I can tell that, but I want you to know that I am here to help you. I will always be with you.” We walked back to the bed. I helped her in. I told her I would stay in bed with her. She said, “Oh, good.”

For the next forty-five minutes, we lay in bed facing each other. She wanted to hold my hand. We spoke very little. She asked my name one time. I said, “Richard. Richard Creighton, and I am your husband. You are Kate Creighton, my wife of almost fifty-six years.” She looked puzzled but didn’t say anything. In a while, she said she was feeling better. When I could tell that she was asleep, I got up. She is still sleeping as I finish this post.

These attacks and milder experiences of knowing something is wrong remind me of my mother who had dementia. I remember so well her saying, “I don’t know what’s wrong with me. I can’t remember anything.” I also recall times when I’ve heard people say, “At least, she doesn’t know.” I’ve realized all along that people with dementia often know that something is wrong even if they don’t know what it is. And it bothers them. What I didn’t expect was that Kate would have these experiences so late in her journey. At this point, I doubt that she has a concept of Alzheimer’s or dementia, but she is able to tell that “I’m not myself.” Those are the moments that are hardest for her. They are for me as well.

Our Most Painful Moment

After coming home from dinner last night, Kate and I spent almost an hour in our family room relaxing. As usual, she worked on her iPad. I took the time to play a variety of music to see how she would react to a broader variety of music than I usually play for her. I (we) were having great success. That was followed by a very nice phone conversation with our son, Kevin. I think we may have talked almost an hour. When the call ended, Kate said, “Aren’t you proud of him?” I said, “Very proud.”

Shortly after Kevin’s call, we decided to get ready for bed. As I got up from my chair, Kate asked, “Where do we keep our clothes?” I said, “Let me show you.” This was the first time she has ever asked that, but it was consistent with other signs of confusion that I’ve observed recently. I took her back to the room where she keeps her clothes and helped her get a night gown. Then I went to take my shower, and she came back to the bedroom where she got into bed with her iPad.

Just before I got to get into bed, she looked up at me and asked, “What is your name?” She started to repeat it and then asked again. After I repeated my name, she said it. Then she asked, “What is my name?” I told her, and she said, “I don’t know why I am so confused.” This was the third time in the past few weeks that she has said this. The first time I told her she had Alzheimer’s. She told me she had forgotten she had it. The next time was during her first anxiety attack when she couldn’t remember who she is or where she was. That time I skirted the issue of Alzheimer’s and focused on calming her. At the time, I didn’t think there was anything to be gained by bringing up her diagnosis. I felt the immediate need was comfort.

Last night, I chose not to say anything about Alzheimer’s and seek to comfort her. This time, however, I was really torn between telling her about her diagnosis and not telling her. I said, “It is very common for us to have memory problems as we age. I think that is what you are experiencing. Whatever, I want you to know that I love you and will help you every step of the way.” She said, “That makes me feel better. I know I’ll get better.” I tried to avoid telling her she would get better and saying that whatever happened I would be with her. She said, “They say you shouldn’t rush it. If we just take it a little at a time.” We talked another 15-30 minutes. I lost track of the time. She repeatedly said she felt better knowing that I would help her. “I know it won’t happen right away. The doctor says we shouldn’t rush.”

Of all the things that might bother me in connection with caring for Kate, there is no question that seeing her suffer is far and away the most painful thing I can experience. I found this excruciating. Here she is 7 years and 8 months since her diagnosis and 12 years since we saw the first signs of her Alzheimer’s. She doesn’t know it is Alzheimer’s, but she truly knows that something is wrong with her, and it’s painful for her. I hate seeing this. Even recently, I had thought we might escape this part of the journey.

This experience and the earlier ones have caused me to reflect on the best way for me to handle them in the future. One thing is clear. I have been successful in addressing her immediate concern. In each case, I have been able to console her and make her feel better. I am still torn between being more honest with her about her Alzheimer’s and not. She is not the kind of person who wants to be deceived. She is the one who wanted to get the diagnosis in the first place. She even said that she was relieved with the doctor gave her the news because it helped her understand what was happening to her. Over the course of her illness, we have periodically talked about death. Both of us accept death as a part of life and don’t fear it or try to avoid conversations about it. In other words, she is not one to avoid the realities of life.

On the other hand, I believe in the importance of hope. I hear her, say things like, “I feel better now. I know you will help me. I’ll get my memory back. It just takes time.” Then I feel she has a hopeful approach that is healthy. I don’t want to risk destroying that sense of hope by telling her she has Alzheimer’s.

I’ve wrestled with this dilemma a good bit this morning. At this moment, I am leaning toward telling her but in a gentle way. In fact, I am thinking about utilizing what I have learned from Cornish’s book, The Dementia Handbook. Her main point is that we should accept the fact that the rational abilities of people with dementia no longer work the way they used to do. Instead, we should emphasize all of the things that they are able to do. Those are all things from which we derive direct pleasure through the experience of our senses. We have done just that throughout our journey, and I hope that we will continue for a good while longer.

Thus, I am thinking of telling Kate that her memory problem is a result of Alzheimer’s but that the good news is that we can continue to enjoy life the same way that we have done in the past – spending time with friends, attending musical events, theater and movies. In addition, I will be her helper when it comes to things that she needs to remember.

The counter argument is that we have been successful by emphasizing Kate’s intuitive abilities. It seems like trying to give a rational explanation runs counter to what she may need most, the knowledge that I will comfort her whatever happens.

I don’t intend to say anything until (unless) she has another episode like last night. Right now, she is up and seems not to have any memory of last night. I would have been very surprised if she had. Waiting to say anything will give me additional time to reflect on my decision. I don’t believe there is any way to determine in advance which is the right way to go. To tell or not to tell. That is the question.

Another Attack. Sundowners?

We had had a very pleasant evening after dinner last night. We were in the family room for over an hour listening to music. Naturally, Kate was working on her iPad. I was writing this morning’s post. About 8:30, I told her I was going to take my shower and that we might watch the last of Sound of Music when I got out. She liked the idea. When I got out of the shower, she came back to the bedroom. She didn’t seem to know what to do. I suggested that she get her night clothes on before watching the movie. She went to her room. When she returned, she had taken off her clothes but didn’t bring her night gown or robe with her. She seemed confused and wanted to take a shower. I helped by walking her to our bathroom, turning on the shower, and getting a couple of towels for her.

After her shower, she started to put on her night gown. I got her “night-time” underwear. I went back into the bathroom to get my nightly medications. When I returned, she hadn’t put on the underwear or her night gown, and I couldn’t find the underwear anywhere. I still haven’t. I just got another pair. She seemed anxious as she tried to dress for bed. That ultimately developed into something more emotional.

She wanted me to dry her back which I did. I asked if she wanted me to help her get dressed. She said she did. Then she said she couldn’t live without me. As she often does, she added, “No, I really mean it. I couldn’t live without you.” I don’t remember her exact words, but she said she couldn’t do anything right.

Although it crossed my mind, I didn’t say anything about her having Alzheimer’s. Instead, I spoke very calmly to her and told her I was going to help her. I put my arms around her and said, “Let’s just relax a minute. Take a slow, deep breath. You’re going to be fine.” After holding her for a few minutes, I asked if she would like to watch the Sound of Music. She said she did. First, I helped her with her night gown. Then I suggested we get into bed and watch the movie. She said she wanted to sit in her chair and work on her iPad. She said, “That relaxes me.”

Right after that, she picked up her iPad and got into bed and started to work on a puzzle while I started the movie. Very quickly she became engaged in the movie and put the iPad down on the bed. We both watched the remaining part of the movie, almost an hour. She relaxed and enjoyed it. The attack was over.

The first time this happened I wondered if this might not be an example of sundowners. Now I have a stronger suspicion that might be what is happening. That doesn’t really explain it. It just gives the behavior a name. If this becomes a habit, it will make a radical change in our evenings. That has been the best time of day for us for several years. I think it is because we have no further obligations after dinner than relaxing and getting ready for bed. We are both very much at ease during that time. That is a time I don’t want to surrender easily. If this occurs again, I plan to do the same as last night. I will respond very calmly and with compassion. That seemed to do the job last night. That along with music might carry us a long way.

It looks like another marker on our journey, and it involves clothes.

This past week Kate’s doctor had asked if she needed any help with dressing. Kate was offended by the suggestion, and I confirmed that she dresses herself. That was only a half-truth. She does need help in putting on the right clothes for a specific occasion as well as selecting clothes that are not too soiled. This morning we may have crossed another marker. She needed my help getting dressed.

We ate lunch at a nicer restaurant than those at which we usually eat. It is also Easter Sunday, so I knew people’s attire will be a little dressier than usual. With that in mind, I carefully chose everything for her and put the clothes on her bed. I even included the specific shoes along with appropriate hosiery.

When I was aware that she had gotten up, I went to her room where she was just getting out of the shower. I told her good morning, reminded her about our lunch plans, and said that I had put her clothes on the bed. I came back in about ten minutes and found that she had selected different clothes and was just about to put them on. I explained once again that she would need something a little dressier and that I had put out the clothes for her. At that time she was sitting in a chair that was only two or three feet from the end of the bed where I had put her clothes. She seemed a little irritated that I was helping. I told her I would get out of her way and let her dress.

In a few minutes, she came out ready to go, but she wasn’t wearing a single item I had picked out. She was also wearing black shoes that didn’t match. I said, “You didn’t put on the clothes I picked out.” Having said that, I quickly realized that wasn’t the best response I could have made. Fortunately, it didn’t seem to bother her. She just said, “Where are they?” I took her back to the bedroom. Her clothes were still there, but I noticed that the shoes were not. I showed her the clothes and started to look for the shoes. She asked me not to leave and said, “I don’t know what to do.” It was painful to see. She was so confused that she didn’t realize that the top I had given her and was in her hand was what she should put on. I couldn’t find her shoes or the hose I had gotten out for her.

After she was dressed, we went back to our bedroom where I had seen a pair of shoes she had worn yesterday. I knew they would be a good substitute for the ones I had originally picked out. She put on the shoes, and we were on our way.

The next issue we faced, and one that continues, is the pain in her knee. I have been unable to tell if the Tylenol has helped. One thing for sure is that she is indicating more pain today than I have observed in the past. Again, it makes me wonder if this isn’t something more than a case of arthritis.

Getting ready did not lead to a panic attack, but Kate was definitely experiencing more emotion as a result of learning she had put on the wrong clothes and having to change. I think that is what caused her to be so confused as she was getting dressed. It was about 20 minutes before we needed to leave for the restaurant, and I didn’t think it was worth it to drop by Panera. I suggested we go to the family room and relax a few minutes before leaving. I gave Kate her iPad and put on an album of soft cello adagios. That seemed to work. She was calm by the time we needed to leave.

When we got in the car, I played the second movement of the Brahms Violin Concerto in D. That is another piece of music I have found to be very relaxing. I have played this often when she has had an actual panic attack. We didn’t speak on the drive to the restaurant. When she got out of the car, I could tell the pain in her knee was bothering her. I parked in the closest place I could, and we walked very slowly to the restaurant.

Conversations

If you are caregiver for someone with dementia, you may relate to an experience Kate and I had last night. From the time of her diagnosis, we have spoken very little about her Alzheimer’s. Most of that came in the first year. Since that time most of what has been said is Kate’s saying that she thinks she is getting along pretty well and my agreeing.

In addition, conversation itself has been different. In the early years, we took time for conversation over many other things. We started regularly sitting down and talking on the patio or in our family room over a glass of wine. The conversations themselves often gravitated to the many memories of our lives together. Somewhere along the way we talked specifically about how fortunate we have been.

Over time, Kate’s memory has waned. That makes conversation for her more difficult. Most of our time together is spent in silence. I have to say this has been something of a challenge for me. I grew up with a mother and father who talked continuously. I am a big talker myself. It actually feels awkward for me to sit across the table from her at a restaurant in silence. Kate is gifted when it comes to ordinary social conversation but is not as driven to talk as I am. During our marriage, I have learned to appreciate her need for private time. Thus, I haven’t been surprised that with her Alzheimer’s, she often tells me not to talk or to “tell me about it tomorrow.” That is my intro to last night.

After we returned home from dinner, Kate dressed for bed and worked puzzles on her iPad. I turned on the TV to one of the football games. About an hour later, Kate said she was going to call it a night. She closed her iPad and went to the bathroom. In a few minutes, I heard her saying, “Oh . . . oh . . . oh . . .” I have never understood this, but it is something she says periodically. When I ask, as I did again last night, she says that nothing is wrong.

As she left the bathroom, she stopped in front of me and told me she loved me and how much she appreciated everything I do for her. Then she got into bed. As she lay there, I could hear her whimpering. I went to her and sat by her on the edge of the bed. I asked her if she were sure she was all right. Again, she said she was fine. I left her a moment and went to the bathroom where I noticed that she had hung her underwear on a towel to dry. I assumed she had had an accident. I went back to her and tried to comfort her. She couldn’t tell me anything except to say she had been reminiscing. I turned off the TV, turned out the lights, and got into bed with her. For the next 30-45 minutes, we talked about our lives together, our honeymoon, the places we had lived, our children and grandchildren, and our travels. It was a very special moment. I hadn’t heard her talk that much in a very long time. As we talked, she calmed down, and we fell asleep.

I’ll never be sure how to explain what happened to bring this on. I suspect, however, it is one of those times when she realizes how much she is declining and losing control. My own feelings were very mixed. I loved being able to have such an easy flowing conversation with her. On the other hand, I can’t help feeling sad to think of her recognition of her current state.

Today should be another bright spot in our Christmas season. We are driving to Asheville where we are going to see the musical Annie. We’ll have a couple of nice meals and enjoy another stay at the Haywood Park Hotel.

A First

Kate and I were to attend a program of our music club this evening. Although its members are involved in a wide variety of musical genres, there is a heavy orientation toward classical music that is reflected in our programs. Kate, whose taste in music is more in the direction of popular music and popular classics has never been as taken with the club as I have. For that reason, she hasn’t attended a meeting in over a year. Last year, I left her at home by herself. I haven’t felt comfortable doing that this year. Since the Christmas program is always a choral group that sings a variety of Christmas music much of which is well-known, I thought I might take her to this one. I am the treasurer, and I needed to deliver a couple of checks as well.

Suspecting that Kate would not be excited about going with me, I decided to test the water by telling her of the meeting several times over the past three days. Each time she had forgotten, and each time she groaned. Then I told her that I thought she would like the program and that we would not stay long and come home right after the program ended instead of staying for the reception afterwards. Each time she agreed to go.

Late this afternoon, I mentioned it twice, once at dinner and once again after we got home. Once again she was not happy about it but said she would go. I picked out her clothes and laid them out on her bed. She was happy about that. I left her to get dressed while I wrote out a couple of checks. About ten minutes later, she came out in a night gown. I said, “You’re in your night gown?” She looked at me with great surprise. I reminded her of the meeting. She had completely forgotten. I brought her clothes back to her. Then she said she didn’t want to go and wanted me to go without her. I told her I didn’t feel comfortable leaving her alone. I probably could have coaxed her into going. I didn’t want to do that. I told her we would stay home but we would have to take my checks to someone else to deliver to the correct parties, and that is what we did.

On a number of occasions Kate has not wanted to go somewhere, and I have made the same decision. The difference tonight was that I had a responsibility to deliver the checks and had told several people that we would be there. In addition, we are supposed to let the secretary know if we cannot attend. The assumption is that the RSVP would come earlier than the time we now had before the meeting.

There is really no great loss in our not having gone, but it was a program I believe Kate would have enjoyed. I know that I would have. I also felt that this was likely to be the last time we attended as a couple.

It is also an indicator of Kate’s continuing downward spiral. In the future, I will need to arrange for a sitter the evenings the club meets. That is only four times a year, only two of which remain in this year. At times like these, I try to be thankful for how slowly she has progressed to this point. I never thought when she was diagnosed seven years ago that I would even have considered her going as a possibility. I am both sad and grateful.