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Kate’s Emotions Bring Touching Moments

Kate received Mother’s Day cards from our daughter and her twin boys on Saturday. I put them on the island in the kitchen with the intention of giving them to her the next morning. When we came home from dinner, she saw them and asked what they were. I told her, and she wanted them. I gave the cards to her and helped her read them. Then she took them back to the bedroom where she looked at them again and put them on her bedside table.

That night she picked them up and sat down with them while I took a shower. She was still looking at them when I got out. She must have looked at them a full 30 minutes. She had a beautiful smile on her face.

After she was dressed and ready for lunch with the sitter yesterday, she picked up the cards and took them to the family room where she sat down and looked at them once again. Knowing that she has trouble reading, I asked if she would like me to read them for her. She did. As I read each one tears filled her eyes, she wanted me to read them again. Then she took the cards in her arms and held them tightly against her chest and said, “I’m going to keep these forever.” She paused and said, “And I’m going to tell my children not to ever throw them away.”

I’ve never seen her react so emotionally to cards. In fact, I have been surprised at how little interest she has had in them in the past. I think the explanation lies in the fact that she is at a new stage of the disease. It seems like she is moved even more now by all those things she experiences intuitively. That is true for music, for the beauty of nature, her interest in children, and to expressions of love and concern for her.

I can think of two other examples from yesterday. One involves a ceramic cat that sits on the floor one side of the fireplace. She passes it every time we leave the house. Yesterday, as usual, she stopped to look at the cat and commented on his eyes. She doesn’t confuse him with a real cat, but she loves him almost as much.

The other involved one of the paper doilies that she brings home from one of the restaurants we visit. She loves them. That was obvious when she held one in her hand and wanted to take it with us to dinner last night. It’s like her emotions are in overdrive. She is becoming more childlike. Her rational abilities are almost gone. Her intuitive ones sustain her. For me, each of these things brings a moment of sadness, but I am grateful and touched to see her enjoy such simple pleasures.

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It Was a Good Day.

After her confusion first thing yesterday morning, Kate was fine when she got  two hours later. We had a nice Mother’s Day lunch at Andriana’s and returned home around 3:00. When we went to bed, I wondered if we might have another night of conversation. Fortunately, we both slept well.

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Another Example of Kate’s Insecurity

Over the past couple of months I have felt much better when leaving Kate with a sitter. There have been one or two occasions when she asked if I couldn’t stay with them, but it didn’t sound like she was doing so as a result of any insecurity. It was more like she just wanted me to share in their time together.

This past Friday Kate was asleep on the sofa in the family room when I left. I started to wake her to say goodbye but didn’t. When I walked into the kitchen on returning home, I heard Mary say, “There he is.” I walked into the family room. Kate was sitting on the sofa. She stood up and said, “Thank God you’re here!” (That’s not something she would typically say.) I walked over to her, and she extended her arms to me, and we hugged. I told her I was sorry I hadn’t said goodbye. She said, “I was all right. I just didn’t know where you were.”

She was obviously relieved to see me. I’m not sure that Mary remembered where I was going. Even if she did, Kate’s memory doesn’t last more than a few seconds. She would never have remembered. On a few other occasions, Mary has mentioned Kate’s asking where I was, but this was the clearest indication of the intensity of her insecurity when she doesn’t where I am. I’m not ready to believe that this will become a pattern for the future, but I will be more alert to that possibility.

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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.

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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.

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Morning, Noon, and Night

As a rule, Kate is happy, but there is clearly some variation that occurs from morning to night. Predicting how she feels in the morning is difficult. She has never been a morning person though she got up early for years without complaining when she was working professionally and playing her role as a mother. Over the course of her Alzheimer’s she has found it harder to get up. Not only that, but she is much less clear-headed now. That varies from one day to the next. Sometimes she seems quite alert. Other times she is quite groggy.

The good news is that she almost always becomes more alert and cheerful as the day progresses. There are exceptions. I reported on one of those two days ago when she didn’t talk much. She didn’t seem unhappy. She was just less energetic. Day before yesterday she was unusually upbeat. Yesterday she was somewhere in between, but happy, and more upbeat from lunch until bedtime.

I have tried to understand why her mood in the afternoon and the evening are the most predictable. I think the answer may lie in the weakness of her rational abilities and strength of her intuitive ones.

Her rational thought processes are weakest upon waking. That actually makes sense to me. I think that is true for many who don’t have dementia. We generally recover quickly as we look around us, especially if we have contact with a spouse or other family member. It doesn’t work as easily for people with dementia. During the day, Kate often doesn’t recognize that she is in our house or who I am, but she is groggiest in the morning. It’s hard for her to put things together.

She is usually able to reach a comfort level in a relatively short period of time. A few times it has taken as much as an hour or two. Here is what I think is going on. The longer she is up, the more contact she has with the things in her environment. That gives her a greater sense of familiarity with me and with our home. It’s not that she necessarily remembers her name and mine or our relationship, but she feels comfortable.

That contrasts with the way she feels upon waking. Then everything seems strange. Fortunately, there have only been one or two times when she didn’t seem comfortable with me. That enables me to help her find things in the environment (for example, looking out the window to our patio and back yard) or telling her things (like her mother and father’s names) that give her a sense of “place.” As we go about our normal routine, she encounters a variety of experiences. Throughout the day, she has more experiences that increase her comfort level.

For several years, I have thought the time after dinner is the best time of the day. A large part of that is because Kate is more at ease, but I think there is more to it than that. By that time of day, she is tired. She really wants to relax. The same is true for me. I have spent the entire day focusing on ways to make her day interesting as well as tending to the many other responsibilities of being her care partner. That includes taking care of the house and all that goes along with it.

When we return home from dinner, she likes to sit in her chair in the family room and work her jigsaw puzzles on her iPad. I like to relax by watching the news. About 8:00, we adjourn to our bedroom where I put on a DVD or YouTube videos of musical performances. We both enjoy the music while she continues with her puzzles, and I often take care of email correspondence, check in on Twitter, or work on my blog. At that time, we are both free of any great demands. Neither of us talks much during that time, but we are both happy doing “nothing” together.

Being alert and happy in in the afternoon and evening does not mean any improvement in Kate’s symptoms associated with her Alzheimer’s. She can be happy and confused at the same time. In fact, it is rare for her to be confused and unhappy. I have reported on each of the times this has occurred. It doesn’t seem like that has happened more than five or six times.

As I have said before, the way I feel is heavily influenced by her mood. I think that has always been the case, but it has become especially pronounced since her diagnosis. I think that relates to the loss of her rational abilities. I have learned to accept the fact that her memory is almost gone. As a result, our relationship is heavily dependent on sharing her intuitive abilities. When she enjoys music, children, social experiences, and nature, especially “all the green” of trees and shrubbery, I enjoy both the experiences she is having and, perhaps more importantly, seeing her enjoy herself. I understand those pleasures can continue close to the end of this journey. If that is so, many happy moments are in our future. If not, I’ll treasure the ones that came before.

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Mood and Conversation

In my previous post I commented on Kate’s less-than-cheerful mood and a change in her conversation. She just hasn’t been talkative lately. That changed yesterday. I wish I could remember exactly what she said, but I can’t. All I can tell you is a summary of what happened.

She was up about 7:30 and went to the bathroom. This was a day when she wanted to express her independence. She didn’t want my help. I walked her to the bathroom. Then I went back to the kitchen where I could watch on the video cam to see when she had finished. After a while, I hadn’t seen her and wondered if she had come out without my noticing. Then I heard the shower. I was happy about that since she was due for one. I also knew that she would want to return to bed afterwards. That would give me a little time to take care of a few things I needed to do. It wasn’t too long before she was in bed again.

From past experience, I knew that she could easily sleep another couple of hours, but I kept checking the video cam. (In case you wondered, my iPad with the video sits to the right of my computer.) At 10:45, she had shown no sign of getting up. I went back to wake her. When I approached the bed, I saw that she was awake and asked if she would like me to take her to lunch. She gave me a confused looked as though she wasn’t sure who I was.

When I sat down on the bed, I said, “I’d like to take you to lunch.” She said, “Where are my clothes?” I always put them on the chair about three feet from her side of the bed, but she can’t remember. I pointed and told her where they were. Then she said, “What do I do now?” I told her she should get dressed. As I helped her into a sitting position, I noticed that she looked frightened. She said, “I sure am glad to see you.” On one or two other occasions, she has been awake but didn’t get up because she didn’t know what to do or where she was. I quickly assumed (correctly) that was what happened this time. She was shaking as she talked. She said, “I didn’t know what to do.” Then I felt terrible for not checking on her earlier, something I will watch more carefully in the future. I apologized and told her how bad I felt. When I did that, she immediately tried to ease my guilt. She said, “Well, it’s going to be all right now? <pause> Isn’t it?” I nodded, but she wanted me to be more affirming and again said, “Isn’t it?” I assured her it was. She still appeared to be shaken by the experience.

Unlike her earlier desire to assert her independence, she wanted me to guide her through every step she needed to take to get ready. She was too emotional to think straight about everything she needed to do. On a normal day she has difficulty, but the emotional experience she had had exacerbated the problem. Several times she reiterated how scared she had been.

On the way to, during, and after lunch she was quite talkative. While we were eating, we had a conversation similar to one I reported on a couple of weeks ago. The first one involved Christopher Columbus. She asked who he was. I tried not to get into anything too overwhelming for her to understand. She asked questions about everything. That meant it did get too complicated for her, but she was still eager to know more. I had to repeat just about everything two or three times without her ever getting it, but she was interested anyway. Somehow the conversation drifted to food that was in the New World and introduced into the Old. I Googled a list of such items and read them to her. She was like a little child discovering something she had never thought about. She couldn’t believe they didn’t always have things like potatoes or corn in Europe before then.

The next topic was World War II. She started this one when she brought up the topic of discrimination. I mentioned the Holocaust and Hitler. We didn’t get too far on that one because she got too emotional. She was both interested and shocked. She is more emotional now and starts to cry at both happy and sad things she hears about.

We got home a short time before the sitter arrived. I didn’t tell Kate that Mary was coming. I just let her in. Kate welcomed her. I told her I was going out for while. She said, “We’ll be fine.” Once again, I left with a good feeling. When I returned, they were sitting in the family room talking happily.

After Mary left, we went to dinner. When we returned home, we sat down in the family room. Ordinarily, I would watch the news while she works on her iPad. She had been in such a good mood that I didn’t want to break it by watching the news. I turned on a Barbra Streisand album as Kate started to open her iPad. The first song I selected was “Send in the Clowns.” It has always been a favorite of hers. Instead of working a puzzle, she put the iPad down and just listened. Then I to selected a number of others that I knew or thought she would like. We sat there together for an hour just enjoying the music. She loved it. I did as well, but the real treat was sharing such a happy moment together. I feel fortunate that we can have moments like these, especially this late in her disease.

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Not a Cheerful Day

Yesterday was a nice day, but Kate was not in a cheerful mood. That was most obvious in her conversation. It began first thing in the morning. She didn’t give me a smile when I went in to get her up. Although she didn’t ask, I am pretty sure that she didn’t recognize me as her husband. On the other hand, she wasn’t alarmed. She was more independent. She didn’t want my help when I gave her my hand to help her from the bed. She told me she could do it herself. As I walked her to the bathroom, she changed her mind and wanted to hold my hand. Once in the bathroom, she responded to me as someone she recognizes and trusts.

We had lunch at Casa Bella with one of our associate pastors and his wife. She has always been drawn to him, but she no longer remembers him or his wife. I reminded her of how much she enjoyed his preaching and teaching. It didn’t seem to ring a bell. The lunch went well. We enjoyed being with them. Kate talked very little. I don’t believe it related to her not remembering them. I think she was just not in a talkative mood yesterday.

Her “Big Sister” photo album was the hit of the day for her. She took it with her when we went to lunch but left it in the car. We came back to the house where she spent some time looking at it before and after our appointments for haircuts and again after dinner before working on her jigsaw puzzles.

She didn’t talk much going to and from our hair appointments or lunch and dinner. Neither did she say much while we eating last night. She didn’t seem depressed at all. She enjoyed herself. There were times when I talked to her and expected a response but didn’t get it. As I think about it now, she hasn’t been very talkative over the past week or so. This comes after a few weeks when she has been. I don’t have an explanation or even a guess as to why. It’s one of those many mysteries. I do know that I like it much more when we have conversations even if they are repeats of the same ones we always have.

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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.

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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.