Concerned About Not Doing What She Believes She Should

When Kate got in the shower yesterday morning, she got upset. At first, she was using the soap. I told her to use it. Then she got very teary and said , “Will you still love me?” I told her I loved her from the day the day we met and would always love her. She gradually calmed down .

As I was helping her into the car after lunch, she said she wanted to tell me something. Then she said, “You have told me a lot of things, but I know I won’t remember them. Promise me you won’t be mad at me?” I assured her that I wouldn’t get mad and was happy to tell her as many times as she needs to ask.  She said she knew I wouldn’t but some people would. She said, “I know you must get tired of me asking you all the time.” I found her concern about my reaction strange. I felt almost like she was afraid of me. It was hard for me to imagine that because it is so out of keeping with our relationship.

She went on to say something else but stumbled on the words. My interpretation was that she couldn’t understand why she has so many problems. I don’t know that I am correct though I do know this is an ongoing concern of hers. Earlier at Panera she wondered why she does so many “stupid things” when she is so smart. Periodically she talks about being smart. I think that is because she is aware of so many things she does that seem to contradict that. I don’t usually feel sad, but this is one of the things that does it. I don’t like to see her suffer.

A Sad Moment

I am always happy to report on the Happy Moments that Kate and I share, but there are occasional times when I feel a moment of sadness. That occurs primarily in times when Kate is unhappy, experiencing anxiety or panic. To a lesser extent it also occurs when there is a change as she loses the ability to do things like working on her computer, the yard or her iPad, or the first time she forgot my name. I recover from her losses, but I have never gotten used to the times she is disturbed. One of those happened yesterday.

As I helped her dress, she was in a good humor, and I was sure that she recognized me as her husband. Then we went to the bathroom to brush her teeth. I asked if she would like some mouthwash. She responded as if I had said something that angered her. She said, “I just want to get out of here. I want to get back to my old self.” Moments later, she looked in the mirror and said, “I look awful. That’s not me.” She was very distressed. I told her I thought she was beautiful, but she didn’t believe me and didn’t want to hear that. She has always wanted me to be truthful with her but has also been aware that I want to say things that make her feel good.

In this case, the truth is that she has put on 40-50 pounds since her diagnosis. That has changed her physical appearance. She doesn’t look the way she did before. At first, I told her that we all change our appearance as we get older. She said, “It’s more than that.” My next option was diversion.

When we finished in the bathroom, I told her I wanted to show her something. I took her hand and we walked to the hall outside our bedroom where we have some of her family photos. First, I showed her the picture of her mother, then her grandmother, followed by her grandfather, and her father. Her mood changed immediately with the first photo. We talked about each one and then went to the family room where she reacted to the flowers, her ceramic cat, and another photo of her father. The crisis was over. The rest of the day she was fine.

This particular experience is just one other that lets me know that she recognizes she is not the same as she used to be, and it hurts. Her intuitive insights generally please me but those about herself are painful to her and, thus, to me as well. I take comfort that incidents like this are rare. I would rather have life the way it is now that what it may be like in the future when that self-awareness is gone.

A Repeat of the Previous Two Days, But . . .
I look at yesterday as another good day, but I have to qualify my judgment. It was good in terms of Kate’s and my relationship. It was not good in terms of the increasing signs of her decline. The past three days have involved a variety of symptoms that signal that she is changing. Let me give you a sense of what the day was like.

Because she had lost sleep night before last, I let her sleep a little longer yesterday. When I went to wake her, I found that she was already awake but didn’t want to get up. My sense was that she responded like a person who was depressed. It wasn’t that she felt a need for sleep but that she just didn’t want to face the day. That is something I have observed on a number of other mornings in recent weeks.

She didn’t remember who I was, but she was cooperative when I invited her to lunch and told her I would help her get ready. Like the day before, she didn’t show any “spark” or sign of enthusiasm until she walked into the family room and saw her flowers. We enjoyed music on the way to lunch. When we arrived at the restaurant, she seemed fine in terms of her mood. She displayed no sign of depression and had a good time at lunch.

She wanted to rest as soon as we got back to the house. As she did the day before, she went to sleep. That has not been typical for her. Not only that, but when she awoke after at least an hour, she didn’t want to look through her photo books or anything else. She just wanted to continue resting. Like the day before, she was very relaxed and peaceful. She was content with no sign of worry. She was “at home.” We spoke for a few minutes. Then she rested but didn’t appear to sleep. Later I told her I wanted to show her something. I didn’t tell her what, but she agreed to look. It was a slide show of photos taken during a trip we took to Bruges and Amsterdam. I was particularly interested in her seeing these photos because there were so many taken at Keukenhof Gardens. I knew that she would enjoy the beauty of the floral displays, and she was. The problem was that she was still tired and wanted to stop after a short period of time. She didn’t go to sleep but rested another forty-five minutes before I got her up for dinner.

At dinner, she displayed more confusion. It began with what is becoming commonplace. She had trouble determining where she was to sit even though I was standing by the seat and pointing to it while I said, “You can sit right here.” When our server brought the bread, she didn’t know what it was or how to eat it. I buttered several slices and put them on her bread plate. Instead of picking up a piece of bread and taking a bite, she used her fork to pick it up. It was awkward for her as she tried to put it in her mouth. I suggested she try picking up a piece with her hand, and she did better. When the meal came, she didn’t know what the rice was, but she liked it as always.

After getting home, I asked if she would like to work puzzles on her iPad while I watched the news. That sounded good to her. It wasn’t long before she was stumped. I tried to help, but that came down to my actually putting the pieces in place for her. She tried another one but was frustrated and wanted to get ready for bed.

I turned on the debate as I prepared to take my shower. Then I asked Kate if she would like me to turn it off. She said she would like to listen a while. She didn’t watch, but she was still listening when I got out. I know she doesn’t know any of the candidates and she couldn’t understand what they were saying. I think she just found it a satisfying distraction. When I went to bed, she was almost asleep. She was very relaxed and seemed to know me.

As I reflect on the past few days, I have thought about two other friends who had spouses with dementia. I had been with them and their spouses less than six months before they died, only a few weeks for one of them. In each case, I was very surprised when they passed away. I had no idea when I saw them that they were so close to the end. Wayne Abernathy called me on Saturday. We had a long conversation during which he talked a lot about the last few months of his wife’s life. He saw it as a time when his wife simply slowed down. As he talked about his experience, it made me wonder if Kate might be at the beginning of this same stage.

I also thought of our friend Nancy Hardwick who lives in Dallas. Her husband died a few weeks after we had dinner with them in 2017. He, too, slowed down after we left. He began to sleep more and said to her, “You know I’m dying.” He was gone in less than three weeks.

I don’t pretend to know what lies ahead. I know that Kate’s mother lived with us almost five and a half years with minimal ability to speak or get around on her own. I don’t want Kate to do the same. I am coming to that place I have heard other caregivers talk about. There is a point at which you believe it is better for the one you love to die than to live. I’m not there yet. For the first time, however, I am beginning to think seriously about her passing and hoping the end will come in a way that is similar to that of Wayne and Nancy’s spouses.

Another Milestone in Our Journey

It was January 21, 2011, when Kate received her Alzheimer’s diagnosis. Late yesterday Kate had a routine appointment with her gerontologist. As I have done prior to other appointments, I posted an update to Kate’s chart via her doctor’s online portal. That way I am free to explain how Kate is doing without worrying about her feeling talked about or my taking over the visit. It worked especially well this time. The doctor took far less time exploring how she was getting along.

She began by asking questions of Kate. Because my report had mentioned a concern with her vision, she asked Kate to read a sign on the back of the door to the room. She was able to see the first word, “Our,” but not pronounce it. She never got to the rest of the words. The doctor asked about her daily routine. Kate hesitated and then mentioned something completely unrelated to the question and unintelligible to us. I had feared that they were going to go through the usual questions related to the President’s name, date, drawing a clock, etc. but was relieved that the doctor felt she had enough without going further. Kate also mentioned working in the yard, but, of course, that is something she hasn’t done in two or three years.

The doctor was accompanied by a man serving a residency with the practice. She asked Kate if it would be all right if she and I stepped out for a few minutes and let the resident collect some additional information. That was fine with Kate, and we left. While we were out of the room, the doctor gave me the prescription and application for a handicapped sticker for our car. That is something I had requested in my update. She also gave me a sheet with a detailed list of symptoms for the 7-Stage Model of the Progression of Alzheimer’s. She agreed with what I had already estimated, that Kate is at the end of Stage 6 and about to enter the final stage. I looked over the list when we got home. It seems rather clear that is correct. As I said in a previous post about two weeks ago, no one can provide a precise estimate of the length of any of the stages, but it was sobering to receive the information.

I thought back to the time of Kate’s diagnosis 8 ½ years ago. Kate and I both expected to hear that she had dementia. Hearing the doctor say it; however, had a great effect on both of us. That was also true for her current doctor’s confirmation of where she is now. I suspect most people who are around her would never guess that she is this far along. I am personally surprised that she is able to function as well as she does now that she is on the cusp of the final stage of the disease. I am able to see all the signs without any problem, but it seems to me that she couldn’t be at this stage just yet. I was also struck by the specific symptoms of each stage. There are quite a few for Stage 6, but very few for Stage 7. I am copying them below.

  • “Frequently lose the ability for recognizable speech although words or phrases may be uttered.” Just beginning for Kate.
  • “Need help with eating and toileting, and there is general urinary incontinence.” Just beginning for Kate.
  • “Lose the ability to walk without assistance, then the ability to sit without support, smile, and to hold up head; reflexes become abnormal, muscles grow rigid, and swallowing is impaired.”) Just beginning for Kate.

Like so many things, I find myself wishing I knew more precisely how much time we have, but it may be better that I don’t.

Looking back, I am satisfied with the way in which we have approached her diagnosis. Our goal was to make the most of whatever time we had. That goal has served us well. It is my intention to continue the same game plan. I realize that we will reach a point at which we are much more restricted in what we are able to do, but we won’t stop until I find that it is wise to do so. I remember that my dad took my mom with him wherever he went, except Kiwanis, until shortly before her death. I hope that Kate and I will be able to do the same.

This is one of those sad moments, but I want to emphasize that we are still experiencing happy moments and will do so for the foreseeable future. Apart from that, I have accumulated a treasure trove of memories before and since her diagnosis. I never imagined that we could enjoy life so much while living with Alzheimer’s. I am truly grateful.

A Visit With Nashville Friends

We drove to Nashville yesterday afternoon to have dinner with longtime friends Jan and Scott Greeley. Kate and Scott have known each other since infancy. Their mothers were friends and pregnant with the two of them at the same time. We spent the night in a hotel and will have lunch with them before going home this afternoon.

It had been about six months since we last saw them. Kate has changed so much since then that I was eager for us to visit before she declines much more. I am glad we did. This was the first visit with any of our friends in which Kate’s changes have been so obvious. I had already prepared them in terms of conversation with her. What I hadn’t done was to let them know of her physical changes as well. In fact, it is something I have only mentioned in passing in my blog. They discovered this before we even got in the house.

They saw us drive up and came out to greet us. We walked up two or three steps to enter their house. Kate is fearful of falling, and she struggled to get up the steps and into the house. She also expressed audible expressions of anguish. This, too, is something that is common. As we entered the house she wanted to hold my hand. This is something that has become increasing common just in the past few weeks. She is very unsure of herself in unfamiliar places. It’s more than a fear of falling. She doesn’t know where she is going, so she holds my hand to guide her.

Over the past few days, I had been trying to refresh her memory about our relationship with them. Of course, I know that she can’t remember, but I wanted to try anyway. It was of no use. Even after reminders as we got close to their house, she had no idea where we were going and who we would see. For the most part, she handled herself well. I don’t think she said or did anything that suggested she didn’t know them. I believe she felt a general sense of familiarity with them but not as strongly as I had hoped.

The Greeleys are making a trip to New Zealand in December and had asked me to bring pictures from our visit there in 2014. We chatted about hour before looking at our slides. Kate was tired and wanted to lie down. She took a seat in a lounge chair and rested while we continued the slide show. When we were finished, we walked into the den where Kate was resting. Scott said something, and Kate said, “You’re a pretty nice guy, and I don’t even know who you are.”

Going out to eat gave the Greeleys another sign of her physical challenges. There was nothing dramatic, but she walked very slowly. She was unsure of herself as we entered the restaurant. She wanted to hold my hand most of the way to our table. Getting into and out of the booth she seemed like a person much older than she is.

I find moments like this to be sad ones. Because of their history together, Kate has always felt very close to Scott. It was sad that she couldn’t remember him. He and Jan gave her two photos taken when the two of them were in high school. I will put them in the three-ring binder that I call her memory book, although they didn’t prompt the enthusiasm that I would have liked. Kate has clearly reached a new stage.

Kate’s Last Pedicure

Kate has always enjoyed manicures and pedicures, and I have periodically taken her for both since her diagnosis. Now, however, she no long remembers the procedures and the little things she is supposed to do. The last couple of times I have stayed with her the whole time just in case she needed my help. It has worked out, but her insecurity on the previous visit made me more cautious. I made an appointment yesterday afternoon.

When we entered the salon, a different person was at the reception desk, so I pulled out one of my Alzheimer’s cards and slipped it to her. Although that was in advance of any problems, it turned out to be a good thing. I walked her back to the chair to help her get seated. Existing customers were in the seats on either side of her. It turned out getting in the chair was an ordeal. That was partially due to the fact that she had to go up a high step to get into it. The other part involves her eyesight and difficulty understanding directions. She apparently couldn’t see or didn’t recognize the chair itself. Despite my efforts to direct her by putting my hand on the seat of the chair and trying to get her to face it, she struggled to understand what we were asking. I should add that the woman who was to give her the pedicure and the woman sitting in the chair to her right were also trying to instruct and guide her. Although we were all trying to help, I suspect we added a measure of confusion. During this process, Kate let out a scream that was easily heard throughout the salon. All eyes were on her. That was just the beginning.

As luck would have it, the woman next to her was a retired nurse and very understanding. She introduced herself and explained the procedures Kate experienced. That began with the warm water running into the tub at her feet. She was frightened at first. The nurse had a very soothing voice that put Kate at ease at least as much as she could in what had to be a strange situation for her. I thought that at some point she would have some sense of familiarity with the process, but that never happened.

I brought Kate’s iPad to her chair; however, I put it down on a step to her side in our effort to get her seated. She didn’t realize it was there. It wasn’t long before she wanted it. The nurse gave her a magazine. I realized she was looking for her iPad and went over and gave it to her. I think the nurse was surprised that she was able to work an iPad. I wasn’t in a position to explain that she has only minimal capability to work her puzzles and that, with some difficulty. It didn’t take long for her to see that for herself. Kate finished one puzzle but didn’t know how to get to the next one. As usual, she made her way into the store. The nurse looked over at me and said she didn’t know how to help her. I intervened and showed her.

We had been there quite a while, when I noticed that Kate and the nurse were talking. The nurse mouthed that she was looking for her “mother.” I am sure she was looking for me and just said mother. She frequently mixes gender and relationships. The nurse showed Kate where I was sitting. She waved to me, and I waved back. A little later, the nurse called me again. This time Kate had taken her feet out of the tub of water. The nurse explained that the water was to soften the skin on the bottom of her feet so that they could smooth it out. Kate didn’t understand. I went to her and explained that she needed to put her feet back in the tub. She did, but it was only a minute or two before the attendant began her work.

That was when the “fun” started. Not knowing what was to come, Kate screamed again and responded audibly while the attendant rubbed the bottom of her heal. I went back to her and helped to calm her and then went back to my seat. In a few minutes, it was time for the other foot. Once again, she was surprised by the experience. I stayed with her for a while. When she was calm again, I took my seat in the waiting area that was about twenty feet across the room and clearly visible to Kate who waved to me periodically.

Finally, it was time to leave. It turned out that getting out of the chair and descending the step was a bigger problem than getting in. Anticipating that she would need my help, I was in place when she was ready. The first problem was standing up from a sitting position. That has become increasingly difficult at home and restaurants. This was a little more frightening for her because the chair was elevated so far off the floor. Kate is very insecure about going down curbs and stairs. To her this must have seemed like jumping off a cliff. All this was accompanied by a variety of audible sounds. As with other moments during the process, all eyes were on Kate.

As we walked out the door, Kate said, “Let’s get out of here.” I think most of the other people in the salon thought of their personal experience as a treat. Far from it for Kate. In the car, I apologized for putting her in this situation and mentioned that we might go back for a manicure sometime. She quickly said, “I don’t ever want to go back there.”

The personnel and the nurse next to Kate were very understanding. I don’t know how the others took it. I only gave my Alzheimer’s cards to the receptionist and the nurse. In my haste to leave, I didn’t think to give one to the woman on the other side of Kate and ask her to pass it around. I wish that I had because I did notice soft laughter among the group. I admit that from their vantage point, it was funny, but it was a sad moment for me. It’s been almost two months since I had to discontinue her bi-weekly massages. Now the mani-pedis. I wonder what is next.

A Day of Sad Moments

I’ve heard other caregivers talk about points on this journey in which their loved ones took a sudden downturn, but Kate’s decline has been very gradual until recently. During the past few weeks, I’ve noticed more changes that occur almost from one day to the next. Yesterday this pattern continued.

It started when I got her up for lunch. She was awake; she just didn’t want to get up. It took the better part of an hour get her to consent. When I walked her to the bathroom, she started shaking. In addition to holding my hand, she grabbed on to my arm with her other hand. She looked frightened just like she did the day before in Nashville. As I did then, I asked if she was afraid. She said she wasn’t. My best guess is that she didn’t know where she was and felt very insecure.

Once she was dressed, I decided to go to a place that is a little farther from home than we usually go. My purpose was to play music she likes in the car and let her begin to feel at ease. That worked, and we had a nice lunch. We had an especially friendly server and joked with him periodically throughout our meal.

When we got home, Kate asked what she could do. I gave the iPad to her and told her she could work her puzzles or look at her photo albums. She chose the iPad. That didn’t last long. She was very tired and asked if she could lie down on the sofa. I told her that would be fine. I let her rest for the next thirty minutes before getting her up for her hair appointment. Unlike the morning, she got up without a problem.

She seemed very needy as we drove away from the house. She said she liked me and liked being with me. She said something similar as we left the hair salon.

Back at the house, she started working puzzles. Very soon she was frustrated and asked me to help her. She looked depressed and was almost in tears. She had reached a point at which she didn’t know what to do. She wanted me to finish her puzzle for her. She asked me to work another. I explained what I was doing with every piece. Then I asked if she would like to work one. She did but wanted me to help her. We tried, but she seemed too tired to think. I said, “I love you and want you to know that I will always be with you.” She said, “I know that, and I need you.” She said she needed a break. I suggested we go to dinner. As she got up from her chair, she said, “You just tell me everything I should do.” This was a very sad moment. Once again, it reveals an awareness of her difficulties, and that is painful for both of us.

On the way, I played music that I knew she would like. That seemed to lift her spirits. We enjoyed our dinner. Near the end, however, she got very sad about the servers. She said she never had to work like that. That got her thinking more broadly about all the people who struggle to make ends meet. She said she grew up taking her life for granted. It is not unusual for her to express such feelings, but she doesn’t usually seem so depressed.

Typically when we arrive at home after dinner, Kate likes to sit in our family and work on the iPad. Last night, she said she was tired and wanted to go to the bedroom. I asked if she would like to watch our DVD of Les Miserables. I thought it would be a good idea because it is our favorite musical. I neglected to take into account the sadness it portrays. It wasn’t long before I could see that she was sad. I asked if she would like to watch something more upbeat. She did. I pulled up a series of segments from Andre Rieu concerts. In the meantime, she decided to go to bed. Fortunately, she sleeps well at night. It wasn’t a good night for me. I was awake at 1:00 and didn’t get back to sleep until after 3:00. I wonder what today will bring.

Joy and Sadness Intertwined

The other day I mentioned that I experience more sad moments now, but that does not mean that we don’t experience many joyful ones as well. Our Saturday meeting with Joan, my Twitter friend, is a good example of that. Even in our daily lives we have such moments. There are also times when I experience both joy and sadness at the same time.

As we arrived home from lunch the other day, Kate asked me her mother’s name. When I told her, she said, “I wish I could have known her.” I said, “Let’s go inside, and I’ll show you some pictures and tell you about her.” Once inside, I took her to the hallway where there are several family photos. I pointed out one of her mother that is a favorite of mine. It must have been taken when she was about twenty. Kate has always liked it as well. She asked me who it was. For several minutes, she looked at it and commented on her mother’s eyes and how beautiful she was. She was deeply touched. Then I showed her pictures of her father. She asked his name and said, “He looks like a good man.” I told her he was “a very good man.” I followed that by showing her a photo of her grandmother. Kate was excited to learn that she had been the first member of the family to attend TCU.

After looking at these pictures, we went back to the family room where I showed her an album she and her brother had made of her mother’s family. It was just like the first time she had ever seen it. She was excited.

After dinner that night, she worked on her iPad for a while. I noticed that she had put it down and was just sitting in the chair looking bored. I brought in the “Big Sister” album that her brother Ken had given her a year ago. We went through a few pages together before I took my shower. She continued to look through it until she was tired, but she had had a day of pleasure looking at her family photos.

They were moments of joy for me as well, but that joy was accompanied by a measure of sadness as I perceived that the pictures did not bring back memories in the way they had done in the past. They only served as brief moments during which I told her about her family. The memory was gone just as fast as I gave her their names. Her interest in the photos struck me as a vain effort to reclaim her memories of family. We’re in a different place now.

The Mixture of Happy and Sad Moments

Throughout the time that Kate and I have been “Living with Alzheimer’s” I have repeatedly told people that she is doing “remarkably well.” That’s exactly what I would say if someone asked today. I’ve tried to be open about the fact that a simple answer doesn’t adequately convey what life is like for us, but it does express what I believe is a central truth. We have lived well from the very beginning, and I have wanted to communicate in my daily interactions with people and through this blog that it is possible to experience joy while living with dementia.

On the other hand, living with this disease is no cakewalk. Since Kate’s diagnosis 8 years and 4 months ago, our world has gotten smaller. One thing after another has dropped from our lives. At the present time, I sense that we are undergoing a more rapid change. We have had an abundance of happy moments. They used to occur all day. Over the past year, we have encountered moments of Kate’s confusion and fright. It seems that we are beginning to experience and happy and unhappy moments during the same day.

Yesterday was a good example. The morning (starting at 3:30) was rocky. When I woke her at 11:00, she got up easily and was in a pleasant mood. She is, however, more sensitive to anything I do that rushes her. While dressing, for example, she wanted direction about what to do. I said, “Let’s put on your bra and pants and then your top.” I had given her too much information. She snapped at me, “Wait a minute.” That is something I hear more often these days. I told her I was sorry. Then she said, “I’m sorry. I shouldn’t have said that.” She wasn’t as cheerful after that. This kind of exchange between us is more common now. I have to be very careful to simplify all my instructions.

On the way to lunch, I played music that I know she enjoys. Before we got to the restaurant, she was her cheerful self again. That continued through lunch. After lunch, we relaxed at the house until it was time to pick up a friend we were taking to see Mamma Mia at a local theater. She had enjoyed the movie, and I was optimistic that she would like the theater production as well. After we were in our seats and the show was about to begin, she wanted something to drink. I told her that food and drinks were not permitted in the auditorium. She became irritated about that. She is less patient than she used to be. When she wants something, she wants it right then. Fortunately, she didn’t create a problem, but she wasn’t happy. During the show, Kate kept looking at me and rolling her eyes. She wasn’t enjoying herself. At intermission, the three of us talked briefly. As it turned out, none of the three of us thought the quality of the performance was up to par. We decided to leave.

We went to a nearby Starbucks where we had a nice visit with our friend. I think Kate enjoyed herself, but it was a challenging experience for her. There was so much she didn’t understand. She kept asking for clarification and repetition of names. I have noticed the same kind of thing in other social situations. In every case, including the one yesterday, the people we have been with understand about Kate’s Alzheimer’s, but it does make a change in the dynamics of conversation.

We took our friend home and then went to a Mediterranean café. While I went to the counter to order, Kate arranged paper napkins and utensils on the table. She used napkins as a placemat with the knives and forks neatly arranged. We had a very pleasant meal. Kate is, however, getting messier. A Greek salad came with her meal. She doesn’t like salads and throughout the meal took the greens off her plate and put them on her napkin (placemat). That created a mound of salad around her plate. She also had rice. That meant a fair amount of rice went with the greens. It turned out that her using a napkin as a placemat was a good idea. When she was finished, I simply picked up the napkin with the greens and put it on my empty plate.

I don’t mention these things because they are big problems. They are not. They are really minor. My point is that Kate is changing. She is beginning to exhibit more of the signs that accompany dementia. It saddens me to see this and to recognize the future is becoming imminent .

Despite the changes that have occurred in the past, we focused on the good things that remain. I am hopeful that we will be able to continue doing so as we experience a greater mixture of happy and sad moments. I suspect that will be harder.

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.