Bedtime Conversation

I am glad to report that the rest of our day yesterday went well. It was a good day. Once again, I want to underscore that did not mean any improvement in Kate’s memory or her confusion. In fact, the past few days she seems to be worse. I say it was good because she was happy and that we enjoyed ourselves.

Throughout the day she couldn’t remember my name and our relationship. Neither could she remember her own name. The difference from the morning was her not showing any signs of being frightened. When she wanted to know my name or hers, she asked as naturally as one might say, “Would you pass the butter, please?” The day ended in a conversation that was just that natural.

Kate got in bed about thirty minutes before me. The past few months I’ve been playing a variety of soft music while we go to sleep. Most of the time I play instrumental music. Last night I put on an old Nat King Cole album. When I got in bed, she said, “I like that. Who’s singing?” I told her. She asked, “What do you want me to do in the morning?” I said, “Well, we’re having lunch with a couple we know from Casa Bella’s music nights. We’re supposed to meet them at noon. I’ll probably get you up around 10:00 so that you will have time to shower and dress.” She said, “Who’s that singing?” I told her again. She said, “Tell me exactly what we’re going to do tomorrow.” This time I repeated what I had said before but added that we might drop by to see a friend who just returned home from the hospital and rehab and then come back to the house until time for dinner. She said, “Who’s singing?” I told her again. She said, “Tell me what we’re going to do tomorrow. Again, I repeated myself. She said, “Who’s that singing?” I said, “Nat King Cole. That’s one of our oldest albums (now streaming from Amazon rather than the original LP), and we’ve been together a long time.” She said, “How long?” I said, “Fifty-six years, and I still love you.” She said, “I love you too.” I said, “We have a lot to be grateful for.” She said, “Like what?” I said, “Well, we have two children that we’re very proud of.” She said, “We have children? Are we married?” I said, “Yes, we’re married and have two children.” She said, “What’s your name?” I told her. Then she asked her name.

We went through two or three more rounds of these questions and answers before Kate said, “I’m going to sleep now.” I told her I was going to do the same. It wasn’t long before we were both asleep. I know I was.

More Confusion and Anxiety

Kate had another anxiety attack this morning. I had just come out of the bathroom and was walking to my closet to get dressed when she said, “Hello.” She sounded quite normal. I walked to the bed and asked if she wanted to go to the bathroom. She didn’t. Then I sat down on the bed and said, “Good morning. Could I help you with anything?” She looked puzzled and said, “I don’t know.” I recognized that she had waked up and had no idea where she was or who I was. I said, “You seem a little confused. I’d like to help you.” She said, “Where am I?” I told her she was in our bedroom in Knoxville. She said, “Who are you?” I gave her my name and told her I was her husband. She didn’t appear to recognize me. This started a circle of the same questions for the next few minutes.

I told her she was the daughter of Elizabeth and Carl Franklin. She didn’t react. I mentioned our children. She still didn’t respond with any sign of recognition. After a few minutes of these same questions, I told her I was getting cold and would like to come around to the other side of the bed and get in with her. She looked very suspicious. I said, “Would that be all right?” She said yes.

Once I was in bed, I began to talk softly to her about her family and our relationship. None of this sparked the kind of recognition that I was hoping for. I asked her if she would like to look at one of her family photo books. That didn’t appeal to her. It wasn’t long before I mentioned the three-ring-binder that is a “memory” book I made for her. I asked if she would like me to read it for her. She liked that. I brought it from the family room and read through the whole thing. It’s not all that long, but it seemed to do the trick. It has the names of her grandparents, parents, children and grandchildren. It also contains information about our first date, courtship, wedding, places we have lived, places we have traveled, etc.

It probably took about 10-15 minutes for me to read it to her. About half-way through, she began to smile as she recognized some of the people and places. By the end, she was completely relaxed. It looked like she was falling asleep. I told her that I was thinking about getting some breakfast and asked if that would be all right or if she would like me to stay. She said, “Stay.” I remained in bed with her another 10 minutes. She was sound asleep. I got up and dressed and ate breakfast.

After breakfast, I read a couple of Twitter messages. I looked up at the video cam and noticed that Kate was sitting up on the side of the bed. I went back to her and found that she had gone to my closet and picked out a pair of her pants and my underwear. She was wearing them when I walked in. She didn’t seem the least bit confused, but she wasn’t cheerful. As I tried to help her with the rest of her clothes, she was insistent on doing it herself. It wasn’t long before she needed help with her bra and socks and asked for help. I feel sorry for her when this happens. She wants so much to be independent, but she really can’t do everything for herself. I think it is good for her to try, but sometimes I jump in to help before she is ready.

By the time she was dressed, she was back to normal. It was about 8:45. I took her to Panera for a muffin. While there, we had a good experience with one of the employees who works behind the counter. After we had been there about twenty minutes, the employee stopped by our table to speak to Kate. She is a very cheerful person. I commented on that, and she told us that cancer changed her life. She is a survivor and thankful for every day. Kate was energized talking with her.

We’re back home now. Kate worked on her iPad a little while and is now napping. I’m not surprised. She was up at least two hours earlier than normal and that was after being awake for an hour or so around 6:15.

We always seem to recover from these moments/periods of confusion, but I fear they are becoming more common. That coupled with the number of other changes she is making remind me that we are in a different place now. These are more challenging times.

Awake Again and Confused

Having a video camera in our bedroom has helped me monitor Kate in the morning while I am in the kitchen. The only problem I have encountered is that I need to watch it constantly. Several times Kate has gotten out of bed while I was reading or working on my computer. One of those was this morning.

After my previous post, I returned to the kitchen since Kate was sleeping soundly. At 10:30, I decided to check on her. I saw the light was on in another bedroom. I walked in and found Kate. She had gotten up and was confused about where she was. She was wandering about. I asked if she wanted to go to the bathroom. She said she didn’t but wanted to lie down. I walked her back to our bedroom. She was shaking from fright. She held my hand all the way. As she got in bed, she asked, “Where are we?” I told her that we were in our home in Knoxville. That didn’t stick. She asked me several other times within a minute or two. I told her she seemed confused. She nodded. I asked if she knew that I am her husband. She said, “Yes.” She asked where we were again. Then she said, “What’s your name?” I said, “Richard Creighton. Do you remember that I’m your husband?” She said she did. She asked if she could rest. I told her she could and that I would get her up when it was time to go to lunch. I asked if she wanted me to stay with her. She said, “Please.”

It is now 11:05. I will let her sleep until 11:15. Then I will wake her for lunch. We are going to one of our local theaters for a 3:00 performance of Mamma Mia, so I can’t let her sleep much longer if I want to avoid rushing her.

Addendum to Previous Post

In yesterday’s post, I mentioned a variety of Kate’s behaviors that suggest to me that she is nearing the last stage of the 7-Stage model of the progression of Alzheimer’s. During the night and this morning, we had two other experiences that reinforce my conclusion.

At 3:30, she started to get out of bed. I asked if she wanted to go to the bathroom. She did, and I walked around the bed to assist her. She seemed amazingly alert. She didn’t want my help except to direct her to the bathroom. I asked if I could do something for her. She said, “I just want to get dressed.” I explained that it was early in the morning, and it would be better to go back to bed. She looked puzzled when I suggested that. It wasn’t until after she left the bathroom that I was able to convince her that she should go back to bed. She seemed wide awake and didn’t go back to sleep immediately. As we lay in bed, she said, “Do you do this for everybody?” I didn’t know what she was talking about but said, “Only for you.” She laughed. Then she said, “Who are you?” I said, “I am Richard Creighton, and I’m your husband.” She laughed again and said, “Oh, please.” Then she asked again, “Do you do this for everybody?” That was followed by my answer and her asking “Who are you?” again. This sequence of questions and answers must have been repeated three or four times. Then I told her I was going to sleep.

Shortly after 7:30, I noticed on the video cam that she was moving in bed and went to the bedroom to check on her. When I approached the bed, I said, “Good morning.” Her eyes were open. She looked at me, but she didn’t say anything. It was clear she was having a very different experience than the one that occurred at 3:30. I told her that it looked like something was bothering her and said I would like to help. She still didn’t say anything. I asked if she could tell me what she was concerned about. She didn’t answer. I said, “Is it something that is hard to explain?” She nodded that it was. I repeated that I would like to help her. Then I told her I had been eating breakfast and asked if she would like me to stay with her. She grabbed my hand and nodded. I told her I would get my breakfast and come back to stay with her.

It is now thirty minutes later, and she appears to be asleep. I’ll stay a little while longer and then go back to the kitchen. She can appear to be so different from one time she wakes up to the next. I can’t help wondering what she will be like when she gets up for the day.

She is definitely making more changes now. Another one that I neglected to mention in yesterday’s post is that she is having more trouble expressing herself and stumbles with the pronunciation of a greater number of words than in the past. She sometimes has trouble remembering and pronouncing simple words like “shoe” or “toes.” She often passes it off and says, “You know what I mean.” As you would expect, this is a concern for me. For the past four years, I have observed the effect that speech has had on our relationship with Kate’s friend, Ellen. She suffered a stroke and has never been able to speak so that we can understand everything she says. At one point, we could understand 60-70% of what she said. During our recent visit, that had dropped to 20-25%. The way Kate is beginning to stumble over her words is similar, though less serious, that our experience with Ellen. Difficulty with speech is another of the signs of the later stages of Alzheimer’s. Life continues to change for us and more rapidly now than in the past.

Taking Stock of Where We Are

I’ve read that one of the first questions most people ask after hearing their diagnosis is “How long do I have?” That was true for Kate. I think the best answer is “It’s hard to be sure.” Kate’s doctor said, “I’ve had patients who lived for another twelve years, but it can vary a lot.” I’ve heard the same figure other places and also 8-10 years.

I was among those who wanted to know “how long?” However, having learned that we had less time than I expected before her diagnosis, I found it more helpful to focus on the present. Kate and I wanted to make the most of that time. On a continuing basis, I have felt knowledge of the various stages of Alzheimer’s is useful.

There are at least two widely accepted models that identify the symptoms that are characteristic of each stage. One has three stages. The other has seven. If I use the 3-Stage model, I believe Kate is in the latter part of Stage 2. The Alzheimer’s Association says that is the longest stage and can last many years. That seems to fit with Kate’s experience.

I have paid more attention to the 7-Stage model. Perhaps that is because it seems somewhat more precise. I know that’s a bit strange to say in that both models describe general characteristics. Not everyone exhibits exactly the same symptoms. I would say that Kate has been in Stage 6 for more than a year. Her recent changes suggest that she is nearing Stage 7. Here is how WebMD describes the symptoms for these stages.

Stage 6: Severe Decline

As Alzheimer’s progresses, your loved one might recognize faces but forget names. He might also mistake a person for someone else, for instance, thinking his wife is his mother. Delusions might a set in, such as thinking he needs to go to work even though he no longer has a job.

You might need to help him go to the bathroom.

It might be hard to talk, but you can still connect with him through the senses. Many people with Alzheimer’s love hearing music, being read to, or looking over old photos.

Stage 7: Very Severe Decline

Many basic abilities in a person with Alzheimer’s, such as eating, walking, and sitting up, fade during this period.

To get an idea of where Kate fits in these models, I think it is better to consider the kinds of behaviors that are now becoming commonplace. Here are a few things that have occurred in the past few days.

Confusion about Where She is

I don’t think she ever is quite sure of where she is with respect to the city of Knoxville. Increasingly, she doesn’t recognize that she is in her own house. She seems to ask where she is less frequently and assume that she is in Fort Worth. Leaving the restaurant the other night, she asked where her childhood home was located. I told her Fort Worth. She asked if I could drive by her house. I told her we would and planned to drive by one of our former houses in Knoxville. It turned out she forgot rather quickly. I just drove home. She never realized what happened. When we arrived home, we looked around the yard. Then I led her into the house. She asked if we were spending the night. I said yes. She wanted to know if I had everything we would need. I told her we did. She didn’t know it was our house. This is not a new experience. It is just more common now.

Having Milder, But More Frequent Moments of Anxiety

It’s been about ten months since Kate’s first attack of anxiety. It occurs when she seems to be aware that she doesn’t know where she is, who she is, or “what is going on.” Altogether she has had only five or six of them. Three occurred in the past week. One was yesterday morning.

She looked sad and/or slightly frightened when I woke her at 11:00. I asked if I could help her. She nodded. I asked her to tell me what was wrong. She didn’t say anything. She closed her eyes and looked so sad. I said, “I think I am your best friend. I would love for you to tell me what’s troubling you so that I can help.” She started to cry but didn’t. She didn’t say anything. I said, “I wonder if you might feel better if you got up and let me take you to lunch.” She nodded agreement. I proceeded to pull the covers back and help her out of bed. I walked her to the bathroom where she used the toilet and then brushed her teeth. Then we walked back to the bed where she sat down to get ready to dress. She said, “I am so glad you’re here.” I said, “You know that I will always be with you. We’re a team. We have been for almost 56 years. We always will be.” She said, “I know. We just clicked.” I said, “Yes, from our first date.” She again said, “I’m so glad I have you.” Then she said, “What is your name?” I told her, and she asked, “What is my name?”

When she had almost finished dressing, she said, “I’m feeling better now.” I said, “I think it was good for you to get up and dressed.” She said, “Yes, but I think it was also talking with you and knowing that you are always with me.” That was one of the many times that I was fighting back tears. We went on to have a nice day.

Recognizing Our Relationship

My guess is that she can’t remember my name or hers most of the time. About six months ago, I would have said she remembers that I am her husband about half the time. I would say that has dropped to 25% of the time. The good news is that she still responds to me as someone she “knows and trusts.”

Heightened Emotions

As she has lost almost all her rational abilities, her intuitive ones have become much more apparent. Her feelings for the beauty of nature, especially trees, are much more noticeable. I had someone refill the pots on our  patio and front porch with new flowering plants. She loves them. I did the same thing last year and hardly got a reaction.

She has stronger feelings about normal items in our environment and wants to take them with her when we go out. The other night she picked up one of the decorative pillows from our bed and took it to the car with us. When we got in the car, she asked what to do with it. I told her I would put it in the back seat. Last night, she wrapped her nightgown around her arm as though it were an injured arm. She was planning to take it to dinner with us.

There are numerous other examples of her emotional attachment and feelings about things. She has developed a ritual of looking at her ceramic cat and a photo of her father each time we are about to leave the house. On only a few occasions has she recognized him as her father.

She has been sensitive to sudden noises for a long time. Now she is frightened even by noises that are not loud. She is bothered by music in restaurants much more than in the past. It seems like almost anything can frighten her.

Music is even more important. She likes for us to sing together. Yesterday, we went to lunch at Applebee’s. It’s just a short drive from our house. I told her I was going to play some music she would like and turned on “Edelweiss.” It hadn’t finished when we arrived at the restaurant. As we walked to the entrance, I started singing it for her. She joined in. We didn’t get far before we stopped. The fellow serving as host opened the door for us. Once we had ordered, Kate wanted us to sing again. I hesitated for a moment. We were early, and there was no one seated around us. I started singing “Edelweiss.” She sang along, carefully following the words as I sang them. It was another touching moment.

She responds with sadness to the news or any other information that involves people who experience some kind of trauma. At Casa Bella this past Thursday, the woman sitting next to her told us about a fire that occurred in the restaurant years ago. Kate didn’t grasp that this was an old incident. She immediately took the woman’s hand with her own hands. She had such a sad look on her face. It looked like she was about to cry. I explained that this was something in the distant past. Then she was all right.

She also responds with a sad look and tears in her eyes when good things happen. Her response to her Mother’s Day cards is a good example. Another would be her response when I tell her I love her.

The heightened intuitive abilities have also been accompanied by changes in her aesthetic tastes. As we go through the laundry room to our garage, she often stops and looks at the items on the counter and admires the arrangement of things. Sometimes she moves some of them to other places she likes better. At restaurant, she sometimes uses her napkin as a place mat and carefully places her flatware on it.

Feeling More Dependence on Me

She asks me for directions on many things she would not have had to do before. For example, last night she asked me where to put her iPad after she had finished using it. Normally, she would just leave it wherever she was at the time. She has a greater sense of not knowing what is the right thing to do. She sometimes asks if she should take all the pills I put out for her. In restaurant, she sometimes asks me where to put her napkin. Over the past month or two, I have started cutting her meat for her. She likes that and has shown no effort to retain her independence.

At the same time I see her adapting well with the sitters, I also see signs of greater dependence. When we arrived home after lunch yesterday, the sitter was waiting for us. Kate said, “Who is that?” I said, “That’s Mary. This is my day to go to the Y. Mary is the one who will be staying with you while I am gone.” She looked disappointed and said, “How long will you be gone?” I said, “A couple of hours.” It’s nearly four hours that I am gone, but I know that she can’t tell how much time has passed. I think “a couple of hours” sounds better than “four.” When she heard that, she shrugged, and we got out of the car. Mary had gotten out of her car and greeted us. Kate responded like she was a longtime friend. Naturally, I felt good about that.

Once inside, Kate followed me to the bathroom where I was brushing my teeth. While she brushed her teeth, I went to the family room where Mary had taken a seat. Before I could say anything, Kate walked in and with a smile on her face said, “Richard said I could go with him.” I hated to tell her I was leaving, but that was the only thing to do. Fortunately, she accepted without protest though she looked disappointed.

There are two other things I should add. One is that she didn’t have as good a time at Casa Bella the other night. We were seated at a larger table with three other couples. That is just too much for her. At first, she seemed to try to be a part of the conversation. She ultimately sat back quietly. I hope that we will be at our regular table in the future.

The other thing is that she has seemed much more childlike in the past few weeks. That’s a little hard to describe, but it is evident in the way she expresses herself.

The rapidity with which the changes are occurring suggests to me that it won’t be much longer before she will be in the late stages regardless of whether I use the 3-Stage or the 7-Stage model. We have gotten along “remarkably well” during the earlier ones. I am hopeful that will be true as we go forward, but it is the stage everyone wishes would never come. I am no exception.

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.

Midnight and Early Morning Conversations

I’m always trying to guess what is going on his Kate’s head. Sometimes I think I have a pretty good idea. Many times, I don’t. Between midnight and 7:00 this morning we had two very different conversations. I don’t know what prompted the first one. I think I understand the second.

Just after midnight, I felt Kate move and looked over. She looked at me. Then she said, “I want you to know how much I love you.” I said, “And I love you too.” Then she said, “If I were to die today, I would . . .” She couldn’t think of the words she wanted to say. I said, “You would be grateful for all the time we had together.”  She said, “Yes, I love you so much.”

That began what must have been a 15-minute conversation in which each of us expressed how thankful we are that we found each other. It’s been a while, but she used to say, “What were the chances that a South Florida boy would end up with a Texas girl?” We often talk about the choice that each of us made to attend TCU. That decision made it possible.

At least three times in our brief conversation she repeated what she had said at the start. “I want you to know how much I love you.” and “If I were to die today . . .” Each time I filled in the last part of her sentence.

We talk about death once and a while. She often says, “We’re all going to die. It’s just part of life.” In all the other times, I knew why she was prompted to comment on dying. This time it came out of the blue. The only thing I know is that she is aware that something is wrong with her. She is having more experiences in which she is concerned about not knowing who she is, where she is, or what is going on. Was she having one of those experiences? It didn’t sound like it. She was talking to me as though she knew exactly who we are and was grateful. It does make me wonder, however, if the experiences of confusion she is having are beginning to make her think she might be dying. I don’t know, but I will be more conscious of any other signs that might suggest that.

I woke up at 5:45 and was about to get up when I heard a whimpering sound from Kate. I told her I was about to get up but wondered if she was all right. She said, “I don’t know. I don’t know where I am or why I am here.” I told her I could help her. She said, “I’m glad you’re here. I’m confused.” I said, “That must be scary.” She said it was. Then I said, “You are Kate Creighton.” She said, “Who are you?” I told her, and she repeated, “I’m glad you’re here.” I told her we had some photo books I could show her and that they would probably help her. She said, “Just talk to me,” and I did.

I put my arm around her and for the next hour told her about her parents, where she was born, our courtship, our marriage, and our children and grandchildren. At one point, I must have started to dose off. She said, “Keep talking.” At 6:50, she seemed relaxed. I said, “Are you all right. I was thinking about getting up.” She said, “I’m fine.” I got up, and she went back to sleep.

I hate for her to have these experiences, but I am glad that it is possible to comfort her when they happen. I really didn’t do much at all. I simply talked to her slowly in a comforting voice and gave her information that stimulated her intuitive thought processes. I am sure she didn’t remember any of it after I told her, but she felt safe and secure.

This is another good example of the intersection of rational and intuitive thought processes. She began the conversation with little or no rational knowledge but an intuitive sense that she should. My providing the knowledge didn’t change what she knows. It did change how she feels.

Things Turned Out All Right Yesterday

After a rocky start yesterday, Kate awoke around 10:45 and was perfectly normal. I didn’t test her to see if she knew our names or our relationship, but she acted as though she did. Before I reminded her that I would be going to Rotary and that the sitter was coming to take her lunch, she was prepared for us to go out together. I thought my telling her I was leaving might change how well things were going. Fortunately, that wasn’t a problem. I suggested that she work on her iPad a few minutes until Cindy arrived. She arrived about ten minutes later. When Kate saw her, she said, “It’s good to see you.”

After Cindy left, Kate was ready to go. It was too early for dinner. We went to Panera for an hour and then to dinner. She was quite tired when we got home. She actually rested a while before going to bed. I think she had not had her afternoon nap. She was in bed by 8:00 although she was awake when I got to bed at 9:30.

Around 4:00 this morning, I felt her move in the bed. She seemed uneasy. I wasn’t sure she was awake, but I asked if she was all right. She said, “I don’t know.” She seemed like she may have been dreaming and that something had disturbed her. She moved closer to me and held my arm tightly. I thought she was frightened and asked if she was afraid. Again, she said, “I don’t know.” This reminded me of the way she was when she got up the first time yesterday morning. She didn’t say anything more. I said, “I am right here with you. You’re going to be all right. I’ll see to that.” She still didn’t say anything. I held her for the next forty-five minutes before she said, “Do we have a wedding?” I told her we didn’t. Then she asked if we have a daughter. I told her we do and that she was already married and had two children. She said, “So we don’t have a wedding?” I told her we didn’t and didn’t have anything she needed to be worried about. I was asleep shortly after 5:00. I’m not sure she was really awake at all during that hour.

Not a Good Way to Start the Day

“It’s a New Day,” but I’m not “feeling good” this morning. About 7:15, the video cam alerted me that Kate was about to get up. I went to the bedroom to find her confused. I told her good morning and asked if I could help her. She said, “I don’t know. I don’t know what’s going on.” As in most of the other occurrences like this, she wasn’t having a panic or anxiety attack. She just looked puzzled about not knowing “what’s going on.” She was never able to say more than that. Based on past experience, I am sure it was waking up and not knowing where she is, why she is here, and who she is. She didn’t ask, but I gave her my name and hers and told her that she was in our house in Knoxville. I added that she was in her very own bed. She didn’t challenge any of that, but it didn’t seem to reduce her confusion.

She asked me what she should do. I told her that she usually liked to get up to go to the bathroom about this time. She asked where the bathroom was and asked if I would show her. I did and then took her back to bed. She was still puzzled. I told her I thought she just woke up and was groggy. I pointed out the window to our back yard. I reminded her of how often she looks out the window and comments on “all the green.” She seemed to recognize the yard. After getting in bed, she asked where I was going to be. I asked if she would like me to sit in my chair beside the bed. She said she would, and that is where I am right now. It sounds like she has gone back to sleep. There is a good chance that she will be fine when she wakes up again. I’ll just have to wait and see.

Moments like this always bring back memories of my mother. She used to say, “I don’t know what’s wrong with me.” That was when I first recognized how wrong people can be when they say things like “Well, at least she doesn’t know.” It was clear to me that my mother knew something was wrong with her. I can say the same thing about Kate. She understands and is disturbed by what is happening. I am grateful that this is not a constant pattern. Most of the time she simply asks where she is, who I am, and who she is without a hint of fear or anxiety. I think I handle the responsibilities of being her caregiver reasonably well. The part that is the biggest problem for me is seeing her when she is disturbed. I hope we are not in for much more of this.

More Insecurity and Memory Issues

Yesterday was a good day. I say that largely because Kate was in a cheerful mood. She was that way when she got up. As I have noted before, that doesn’t mean there was any improvement in her memory or confusion. When she appears to be so normal, I am still surprised when she says or does something that would be more characteristic of someone with dementia.

As she cheerfully got out of bed, she said matter of factly, “I don’t know my name.” We started to leave for lunch, and she asked my name and hers. She asked again as we walked from the car to the restaurant for lunch. She seemed perfectly alert and normal. There was no sign of frustration or anxiety. She just didn’t know our names and was matter of fact about acknowledging it.

At dinner, she said, “I want you to tell me what I would say that I want if you weren’t with me?” I told her there are two dishes that she likes and that she should ask for one of them. One is Tortelloni alla Stephania. The other is Tortelloni alla Panna. She tried to pronounce both names and did pretty well, but she wanted to get it right. She asked to see them on the menu. Then we practiced her saying both names several times. As we were doing this, our server walked to the table to take our order. She asked the server to help her say them. The server started to tell her the ingredients in each one. Kate was able to convey that she wanted to know how to pronounce the names. She practiced saying them several times. The server was new and didn’t know about Kate’s Alzheimer’s. I am sure she thought this was a bit strange. Ultimately, Kate was able to give the order herself.

My point is that Kate was unusually interested in knowing what she should do if I were not there to help her. I told her not to worry that I would always be with her, but she was obviously aware of how little she knows. It must have bothered her to think how she would order a meal if she were alone even though I could see no indication that she was disturbed. On the surface, her asking how to order her meal appeared to arise from an “intellectual” rather than an “emotional” basis. On a few occasions, she has also asked me how to get home after eating out. I have tried to tell her, but it is too complicated for her to understand or to remember.

The experience with the sitter yesterday also went well. The only sign that might suggest insecurity came as I left. She said, “You’re going to leave us?” I told her I would be back a little later. She was fine with that.

Last night she picked up a photo book of her father’s family. She spent at least an hour with it. She tried to go through it by herself. I gave her the chance to do that; however, she repeatedly had questions. I ended up standing by her chair as I watched the evening news. That way I could answer her questions as they came up and read sections of the text that she didn’t understand. She enjoyed looking at the pictures of her family. I look at her initiation of things like this as her way of trying to give herself a better sense of who she is. I am glad she has such a great collection of family photos. Working puzzles is entertaining, but the photos give her a better sense of herself and her place in her family.