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Thoughts on Pixels and Kate’s Confusion

On any given day Kate may express confusion, clarity, sadness, and joy. My own emotions vary a lot as I observe each of these things. That was true on Thursday of this week, but, overall, it was another good day.

Kate has always been a little slow to wake up. As her Alzheimer’s has progressed, she has been more confused. As we move through each day’s activities, she improves. I often find that she is at her best in the afternoon and evening. I have a thought about why. I have been using the pixels on a computer screen as a simile. When we look at pictures on the computer they look beautiful. That’s because all the pixels are working as they should. Let me explain how I apply that to Kate’s behavior.

Let’s take a step back. Remember tabula rasa (the idea that we begin life with a blank slate)? Upon birth babies immediately begin to fill that blank slate. The more experience and education we get the more we fill the space. To me that’s like adding pixels. For many reasons, some people have more pixels than others just like our electronic devices. The “pixels” in the brains of people with dementia are damaged. At first, it’s just a few that are not working, but ultimately virtually all of those pixels that relate to our rational abilities fail to work as they did before.

If I extend that idea to Kate’s behavior during a day, I would say that upon waking many of those pixels are not working well. As she wakes up and engages in more activity and conversation some of those pixels begin to work again. They may or may not work perfectly, but they work sufficiently to enable her to function reasonably well. Toward the end of the day they work best although she sometimes experiences overload. When that happens, she is confused again. With this in mind, let me take you back to Thursday.

I got up with her a few minutes before 6:00 to go to the bathroom. She went back to bed, and I got ready for the day. She got up again at 9:45 and went to the bathroom. I thought she might want to get up, but she wanted to return to bed. At 11:00 when I went back to see if she would like to get up, she was awake. This time she was ready to get up. As I was helping her dress, she asked if I were her daddy. I said, “Would you like that?” She smiled and nodded. I said, “I’m your daddy.” Then she asked, “Where is my mother?” I said, “She’s in Fort Worth.” She asked her name. When I told her, she said, “She was a nice lady. People liked her.” I agreed. I can’t say what was going on in her head at the time, but she was confused. It seemed like she must have been wondering why her father wasn’t with her mother or where she was if her mother was in Fort Worth. That made me wonder if I was wrong about telling her that I was her daddy.

Just before leaving the house for lunch, she said, “Yes, Daddy” when I told her I needed to put some drops in her eyes. I didn’t say anything. Once we were in the car, she said, “Are you my daddy?” I hesitated a moment and said, “Would you like me to be your daddy?” She said, “I can see you’re not going to tell me.” Then I said, “Would you really like to know?” She said she would, and I told her I was her husband. She is frequently surprised at this news, but this time she appeared shocked. My immediate thought was “Richard, you’re causing more problems than solutions.” It reminded me of what I’ve heard so many times. “Once you tell a lie, it leads to other lies.” I felt the deed was done and didn’t back away. I told her that we had met at TCU, fell in love and married in 1963. She remained confused for a couple of minutes (maybe less). Then she had forgotten. She called me daddy one more time before we got to the restaurant. After that, I had a sense that she knew that we were married. In fact, one time she said something about our being together a long time.

Once we were home, I picked up one of her family photo albums. This was one that focused on her mother’s family. It had been a while since she had looked at it, and she responded enthusiastically. I looked over her shoulder as she went through a large portion of the album for almost an hour. I was pleased with two things. First, it seemed like she was showing less confusion as she went through the album. It was as though the accumulated impact of seeing the large number of pictures of people and places from her past was rekindling the connections in her brain. To me it was like lighting more pixels, but not all the connections came back. It was mostly her feelings and not the facts. For example, she still had trouble remembering people’s names and recognizing them as we went from picture to picture.

That night we went to Casa Bella. It was an unusually good night of music from Broadway. She loved the music and the two singers and expressed her pleasure audibly. This was one of those times when I wonder if anyone finds her audible reaction unpleasant. I don’t think so. They were noticed, however. At the end of the evening, the man seated next to me said, “This was a really good night for Kate.”

It was not just her pleasure that I thought was striking. She also seemed quite alert and happy. She didn’t seem like the same confused person she was earlier in the day. It was like all those pixels were charged up and working well. Of course, they weren’t. Alzheimer’s has damaged her brain so much that at this point there is never a time when everything is working, but I am thankful for those moments when it appears to me and to others that they are.

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A Rocky Start, But a Grand Finish

When I went in to wake Kate yesterday, I wasn’t sure what kind of day it would be. She opened her eyes as I approached the bed and gave me a very warm smile. It looked like a time when she knew me. I said good morning and told her I loved her. Then I said, “I hate to get you up. You look so comfortable.” Her face turned to sadness, and she said, “This isn’t easy.” I didn’t know what she meant and asked what was wrong. She hesitated and said, “It’s hard to put in words.” I encouraged her to help me understand. Then I said, “I want to help you.” She said, “What can you do?” I said, “I can be your friend and comfort you.” She said, “I like that,” but she didn’t say anything more. I let it go. I suggested she get up and take a shower. She accepted the suggestion and seemed all right for the balance of the day.

She periodically has these moments of worry or anxiety. When she says things like “This isn’t easy,” I can only wonder if she is talking about her Alzheimer’s. It always sounds like it, but I can’t be sure. I am confident that she no longer knows she has the disease; however, I know she recognizes her memory is gone. She sometimes expresses concern about it. More frequently, she says, “Don’t tell me more. I won’t remember it.” Sometimes she stops working her puzzles when she knows she is not thinking clearly. She says she is tired. Yesterday she had a similar experience with her “Big Sister” album. She can only process so much information. These moments are the hardest ones for me.

I am often amazed at how quickly she can forget. At lunch, she said, “What is your full name?” I said, “Richard Lee Creighton.” She said it and then tried to say it again and couldn’t. She asked me to say it again slowly. After I did, she said, “Now let me say it.” She said it twice, took a slight pause and said, “What is it again?” She had forgotten again in a split second. It’s like turning a light switch on and off.

I don’t know if she knew me as her husband earlier that morning, but I know she did when we returned home after getting haircuts. She wanted something to drink. I told her we had apple juice and water. She eagerly said, “Can I have apple juice?” I told her she could and added, “I only let my best girl friends have apple juice.” She quickly said, “I better be your only girlfriend. We’re married you know.” A quick response like this is not uncommon. I was playing a CD of A Chorus Line. I know that she enjoys the music, but I was surprised at her laughter at the lyrics of one of the songs. Apart from that I had no sense of her listening to the lyrics. I thought it was just the music she paid attention to. There are also moments when she does something that I don’t like. She will say, “I know that bothers you.” Then I say something like, “No, that’s just fine.” She follows that with “I know you’re just trying to be nice.” She is still insightful.

The highlight of the day for both of us was our weekly dinner at Bonefish Grill. As the host was showing us to our table, we passed someone I hadn’t seen in several years. He and my dad were good friends who met in a seniors’ writing class. Dad was 26 years his senior and he (like many others) took an interest in the fact that Dad seemed so much younger than his years. He introduced us to his lady friend and told us that she was moving from New York City to live with him. We chatted a few minutes. Then they invited us to join them. We accepted their invitation and had an interesting time catching up and learning about his new friend. They had been college sweethearts at the University of Illinois in the late 50s and early 60s. They had lost touch since college, and each had married other people. Their spouses had died, and he looked her up and found her. That was several months ago. Kate and I have traveled to New York quite a few times. That and the warmth of the couple enabled her to feel comfortable in participating in the conversation. We had a great evening together and talked about our getting together again when she makes her move in March. At one point while the two women were talking, I had an opportunity to ask my friend if I had told him about Kate’s Alzheimer’s. He said I had and told me that his friend is facing the same thing. It’s just one more reminder of how common this disease is. I plan to stay in touch with him.

It was a week ago yesterday that Kate had her cataract surgery. It is clearer to me that she is able to see more easily now. Her vision is far from perfect, but now I am reasonably sure it is the Alzheimer’s and not her actual vision that is the problem. Yesterday she picked up her “Big Sister” album. The cover photo had caught her as eye as she walked by it in the family room. She thought the picture of her brother was our son, but that is definitely related to her Alzheimer’s. As she leafed through the pages, she tried to read the text. In the past, she has just looked at the pictures. I feel good about our going ahead with her surgery. I am sure it will continue to have a payoff even as she declines further. Our son and his family are coming for a visit during their spring break. Her improved vision should enhance her experience with them. It is difficult enough to have lost memory, but to lose her ability to see could have made a major difference in her quality of life.

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Relieving Confusion

Kate seems to be entering a new state of confusion. For months, I have noted that she sometimes forgets I am her husband. In the past few days she has more frequently asked if I am her daddy. I believe this represents a further step along the way to totally forgetting who I am.

It also requires me to think more carefully about telling her who I am. I believe when she asks, she really wants me to tell her the truth. I’m not going to correct her if she calls me “Daddy.” On the other hand, I will continue telling her the truth when she asks unless or until I see any harmful effects. Even though she is usually surprised to find out that we are married, she hasn’t seemed especially disturbed. Yesterday morning she even reacted positively. When I told her I was her husband, she had a funny look on her face. I asked if that bothered her. She said, “No, I like that. You’re a nice guy.” I intend to watch carefully for any change and make adjustments accordingly.

So far I have been encouraged by my ability to lead her out of confusion. This morning’s events are a good example. I didn’t see or hear her when she got up at 7:30 to go to the bathroom, but I heard her say, “Hey.” I found her in a hallway where she had just come out of the bathroom. She asked me what she should do. I wasn’t quite sure what to say. Except for her reliance on me to tell her what to do, she seemed much more alert than usual. It looked like it would be easy to have her take a shower and get dressed. The fact that it was so much earlier than she usually gets up made me think she should rest a little longer. I suggested she do so. When I pulled the covers over her, she said, “What do you want me to do now?” It didn’t sound like she was ready to go back to sleep. I decided to get her up for a shower.

She got up right away and wanted to know where to shower. I walked her to the bathroom. In keeping with her previous line of questions, she wanted me to tell her each step to take.

After her shower, she went back to bed and fell asleep. I got her up shortly after 11:00 so that she would be ready by the time the sitter arrived at noon. Since she was waking up from a sleep, I wasn’t surprised that she was just as confused as she had been earlier. I went to the family room and brought back the “Big Sister Album” Ken had made for her last spring. She took one look at the cover picture of her and her brother. She smiled and commented on the smiles of the two children. She loves that picture. She asked if that was a picture of her. I told her it was. She wanted to know who the boy was. I told her it was her brother Ken. Then I suggested we go to the family room, and I would show her pictures of her mother and father. She liked that.

As we looked through the pictures, she seemed to gain a better sense of who she is. She still had trouble remembering the people in the pictures, but she recognized some of them. As she did the last time we looked through it, she recognized her grandmother, calling her Nana. In contrast, she repeatedly asked me her parents’ names.

This experience and others like it have made think once again about rational and intuitive abilities. Looking at the pictures didn’t help her identify the people (rational ability); however, it did eliminate her confused feeling (intuitive ability). She seemed to have a sense of connection to her family that was calming. She is especially sensitive to the smiles in all the pictures. As we move from picture to picture she says things like, “Oh, look she’s smiling,” “She’s not smiling,” or “Look at his smile.” The smiles have a real impact on her and bring smiles to her face.

My original intent was to let the sitter take Kate to lunch, but I didn’t have Rotary and decided to go with them. That gave me an opportunity get a little better acquainted with her since this was her second time. I had the same good feeling about her that I had last week. Kate did as well. Before leaving, I put in a DVD of Fiddler on the Roof for them. When I returned they were watching.

Kate was tired and wanted to rest a while. When she got up, she wanted to know what she could do. I told her she could work puzzles on her iPad. She didn’t know what an iPad was. She forgot the name of the iPad quite a while ago and often doesn’t know what it does when she sees it. I got the iPad and gave it to her. She sat down and asked me where we were. I told her we were in Knoxville. She said, “Good. I thought we were in New York.” I said, “I thought you loved New York.” She said, “I do, but I like it here. We come here a lot.”

An hour later we left for dinner. Friends we met at Casa Bella had invited us to dinner at an Italian restaurant near their home. We’ve gotten together several other times and enjoyed being with them. We had a good meal and pleasant conversation. As usual, Kate handled herself quite well.

It is becoming increasingly difficult for her to follow conversations. A number of times she stopped one of us to explain something she missed or didn’t understand. I think the problem occurs with the shift of conversation from one person to the next. It’s just too fast for her.

I’ve noticed other things like that. Increasingly, she wants me to simplify things I tell her. It’s confusing to say, “Here are your clothes. Put on your top and pants.” When I do that she says, “Tell me one thing at a time.” When looking at photos, I might say, “Look at this picture of your daddy.” It takes her a while to locate her father even if my finger is on the picture. It’s as though she sees a vast array of stimuli and doesn’t know where to look.

From the time the sitter arrived until we went to bed, Kate didn’t show any unusual signs of confusion. I don’t mean that she didn’t experience any confusion. For example, she never knows where she is and usually doesn’t know my name or hers. What I mean is that she didn’t show any signs of being disturbed by her memory problems. I didn’t specifically ask, but I think she knew I was her husband. I know that sometime during the late afternoon or at dinner she mentioned our two children. Her day was highlighted by her “Big Sister Album” and having dinner with friends. It was a good day.

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“Are you my Daddy?”

After being up at 1:30 and again at 7:45 yesterday, Kate got up for good before 9:30. She seemed rested and didn’t show the same degree of confusion she had shown earlier. She still didn’t recognize me as her husband but wasn’t disturbed by it. She was very much like she was the previous night when she thought of me as a good friend.

We made it to Panera for a muffin just after 10:00. Soon after getting into the car, she asked if I were her daddy. I told her I would be happy to be her daddy. She frowned and said, “So you’re not gonna tell me.” I said, “Do you think of me as your daddy?” She said she did. I said, “Well, I am.” We had a similar exchange at Panera. When I told her I would be happy to be her daddy, she said, “You’re not my daddy.”

A little later at lunch, she said, “What is your real name?” I told her and she said, “You could be my adopted daddy.” I said, “I like that.” She asked my name again. Then she told me that she could introduce me to our server as her adopted daddy. That didn’t happen. By the time the server came back she had forgotten altogether. My interpretation is that she was accepting that I was not her daddy, but she didn’t think of me as her husband. To her it must have seemed appropriate to think of me as someone close enough to be her daddy, hence the idea of her adopted daddy. That may be a nice transition from being her husband. I could live happily with that.

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Thoughts on Telling the Truth (Again)

The issue of telling the truth to a person with dementia is an ongoing conversation. It comes up periodically on the various message boards as well as social media sites like Facebook and Twitter. There seems to be almost universal agreement that caregivers will find that telling the truth can actually be harmful. That happens because people with dementia often live in their own reality. They may believe that deceased parents are still living, that they themselves are living in another place than where they really live, or that someone other than one’s spouse is her spouse. To tell a person that her mother is dead can be hurtful. When a loved one asks where her mother is, it may be much better to say something like “She is at home.” The idea is to keep the answer to something that is brief and clear. There is little need for embellishment.

Up to this point, I’ve been telling Kate the truth except about her diagnosis. I haven’t mentioned her having Alzheimer’s since last summer when I did so on two separate occasions. Neither case created a problem. As time passed, I have been less willing to take a risk. I have been helped by the fact that, until this morning, she hasn’t had a serious concern about why her memory is so poor.

While I agree with the consensus that not telling the truth is often the right thing, I haven’t felt the need to apply that with Kate. That may be because she often asks me where we are, who I am, who she is, etc. It only seems natural to tell her the truth. That has worked well, but recently I have seen signs that I may need to be less truthful with her than in the past. One of those occurred last night.

As we walked from the car to the restaurant for dinner, she called me “Daddy.” Then she asked if I were her daddy. I told her I was happy to be her daddy. She pushed for the truth and asked if I were. I told her I was her husband. Once at the table, the subject came up again. This time when I told her the truth, she looked skeptical. She told me she thought of me as a good friend. She said she liked being with me and felt safe with me. What she said was especially interesting since she had said similar things to me when I assumed she recognized me as her husband. It gave me a different perspective about the things she says about me. I’ve always interpreted them as words that she would only use for a husband, but it became clear to me that there may have been many other times that she has thought of me as a good friend.

To date, I don’t think the truth has caused any problem, but another incident at lunch yesterday came closer to being just that. In that case, she brought up her mother and wanted me to tell her something about her. I began with “She was . . .” Kate quickly said, “Was?” In an attempt to soften the impact of what I had said, I explained that her mother had died thirteen years ago. Then I told her that she had done a really good thing for her mother. I told her that she had cared for her mother the last five and a half years of her life with the help of six or eight paid caregivers. Kate was very sad and teary. As I told her a little more about her mother, she recovered, and all was well. It did make me think about whether to tell her the truth again. She seems to want the truth, but I don’t want to hurt her. Knowing when it is best not to be truthful can be tricky.

Early this morning we had an experience that was a precursor to the one I wrote about in my earlier post. At 1:30, I started to get a cramp in my leg. I got up. When I got back in bed, I noticed that her eyes were open. She looked like she wanted something. I asked if she wanted to go to the bathroom. She did and wanted to know where it was. I told her I would show her. We walked to the bathroom. I asked if she wanted fresh underwear. She did. She thanked me. Before returning to the bedroom, she said, “You must have a wonderful wife.” I told her I did. She said, “She’s very lucky to have you. What’s her name?” I said, “Kate.” As we walked back to the bed, she kept thanking me. She said, “I don’t know what I would have done without you.” Before getting in bed, she asked where we were. I told her Knoxville. She said, “I mean where are we right now.” I said, “We’re at our house.” She said, “We are?” She didn’t press me for any further explanation. I was glad. At that time of the morning, I didn’t want to test my judgment about telling or not telling the truth.

Once in bed, she thanked me again. She seemed a bit nervous, not quite shaking but uneasy. I said, “You’re going to be all right. You are safe. I am right here with you. I’ll always be with you.” It wasn’t long before she said, “I feel better now. Thanks to you. <pause> What’s your wife’s name?” I told her. In a few minutes, she asked again. This time when I told her, she said, “That’s my name.” She was relaxed and soon asleep. I got up to record our conversation and returned to bed at 2:35.

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A Confusing Start

About 7:45 this morning, I saw on the video cam that Kate was getting out of bed. I walked to the bedroom and saw her standing at the foot of the bed. She was glad to see me, actually relieved though I didn’t realize it until a few minutes later. I asked if she wanted to go to the bathroom. She said she did and asked where it was. I walked her there. I left her in the bathroom and went back to the kitchen where I could watch the video cam to see when she was ready to go back to bed.

It wasn’t long before I heard her say, “Hey.” She had cracked the door open. When I got to her, she wanted to know what she should do now. I told her it was still early and that she should rest a little longer. As we walked, she thanked me for helping her. She said, “I don’t know anything. I don’t know what to do.” I told her I would help her. She thanked me again and said, “You’re so nice to me. You make me feel better.”

After she was in bed, she said, “I don’t even know where I am.” I explained that she was in her very own home in Knoxville. She said, “I am?” Then I told her it was our home. She was surprised and couldn’t understand how that had happened. As we talked, she began to relax. I told her I was going back to the kitchen and that she could call me if she needed anything. She asked my name. I told her and said, “Just call my name.” Then I said, “Or you could just say, ‘Hey.’” She repeated “Hey,” and I told her that was all she needed for me to come back. Before leaving, I asked if she would feel better if I sat in my chair beside the bed. She told me I didn’t need to do that. She thanked me again, and I left the room.

This was a moment in which I felt her complete dependence on me. She said it was frightening. I can’t imagine what it must feel like, but frightening seems to come close. Her memory is flying away, but she still retains the ability to recognize she has a problem and can’t understand why. It was a similar experience last summer that led me to remind her that she has Alzheimer’s. I chose not to tell her this time. I decided to focus solely on being compassionate in the words I spoke and in the tone of voice I used. I told her she was going to be all right, that I was with her and would help her. That seemed to work.

I wonder how she will feel when she gets up. It’s quite possible that she may not feel the same level of confusion. On the other hand, I know that someday the confusion will not go away. By then, she may not realize she has a problem at all. I don’t want that nor do I want her to suffer from recognizing how little she knows or understands. What I wish for most is something that can’t be. I wish she didn’t have this disease at all. Like all caregivers in my position, I have to focus on what I can do – make her life as pleasurable and frustration free as possible. That has served us well up to this point. I trust that it will carry us through to the end.

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Dinner Conversation

Several times I’ve mentioned that Kate sometimes thinks I am her daddy. Usually, she asks, “Are you my daddy?” when she doesn’t remember who I am. On other occasions, she says something like, “Okay, Daddy. Whatever you say.” These words are less clear in their meaning. It could mean that she was teasing me when she thinks I am treating her like a child. Often I am left in doubt as to what she means.

Last night at dinner we had a conversation that illustrates how she can move seamlessly between understanding and not understanding. I can’t remember the exact words, but here’s my reconstruction of our conversation.

It started when she asked where we were. I told her we were in Knoxville where we had lived for forty-seven years. She said, “And I’ve never had a boyfriend.” I said, “I could be your boyfriend.” She said, “You’re my daddy.” Then she paused a moment to think and said, “I would say that any girl would be happy to have you as her boyfriend.” I thanked her for the compliment. Neither of us said anything for a minute or two. Then she asked asked where we were. Once again, I told her we were in Knoxville. This time I added, “And this is where our two children grew up. They were almost 3 and 1 when we moved here.” Sometimes she expresses surprise. Not this time. She just said, “What are their names?” From this point on we continued the conversation without any sign of her thinking I was her daddy. To me it was a good example of how easily her perceptions seemed to drift from one “reality” to another in such a short span of time.

A related example occurred when we had finished our meal. I asked if she wanted dessert. She said she was full and just couldn’t. I told her I felt the same way. Moments later the server approached the table and asked if we were ready for dessert. Kate said, “What do you have?” I knew then she had made a different decision, and, of course, I enjoyed the fudge brownie and ice cream with her. We’re living in the moment and loving it.

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We Take So Much for Granted.

Most of the things we do during the course of an ordinary day we do without even thinking. We’ve learned to do what is appropriate in the vast majority of situations. We come to this through explicit and implicit training from parents, teachers, and everyone else around us. To be sure, the daily news is filled with the most egregious violations of customs or the law, but most of us abide by the norms most of the time. It’s through our rational ability that we learn to follow the rules for both big and little things.

As I have noted before, dementia robs a person of that rational ability. People with dementia often say or do things they would not have done prior to their disease. We generally understand this, but caregivers are always facing new things we didn’t expect. That happened to me tonight.

As Kate prepared for bed, she walked into the bathroom. She saw a tube of toothpaste, picked it up, lifted her arm, and motioning with hand signals asked if she should put it under her arms. I explained that it was for her teeth. Then I showed her the deodorant and told her that was for under her arms. Moments later I saw that she had put toothpaste on her neck.

Although I was surprised, Now that I have reflected a bit, I find her question understandable. This is a sign that she is reaching another stage of her Alzheimer’s. Things like brushing her teeth and using deodorant are regular habits that we do automatically. That is a strong habit for Kate and has lasted a long time, but even that is now fading away. Earlier in the day she had given me the same hand signals without lifting her arm. That time I correctly thought she was asking if she should brush her teeth. Like most habits that weaken, the process is usually a gradual one. I am sure I will see more of this in the future.

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Light at the End of the Tunnel (The Cold, That Is)

Yesterday Kate got up around 7:30, went to the bathroom and back to bed. I was pleased when I noticed in the video cam that she was about to get out of bed at 9:00. I went to her and asked if she wanted to get up. She said she did. As usual, the first thing she asked was, “Where are my clothes?” I asked if she wanted to take a shower. She looked unsure. I told her I thought it would be a good idea. She asked where she could find the bathroom. She rarely remembers. I know that she finds one if I am not with her. She must walk around until she finds one.

I went to the kitchen after seeing that she got in the shower. It wasn’t long before I saw that she was out and getting into bed. It was still early, and I know that she likes to stay in bed after her shower so I let her stay there an hour or more. While she was resting, she had a coughing spell about ten minutes. She seemed to be getting along pretty well as she was dressing and on the way to lunch. I didn’t hear any signs of wheezing then or the rest of the day.

She also got along well while we were at the restaurant. She had her usual memory problems, but they seemed worse yesterday. It started with one of the pictures of Frank Sinatra on the restaurant walls. Over and over she asked his name, sometimes within seconds. It is virtually impossible for her to retain information. We had chatted for about twenty minutes when she said, “What is my name?” She followed that with “What is your name?” After I told her, I asked, “Do you think we’re connected?” She said, “Are we married?” This time she didn’t seem skeptical the way she usually does and didn’t say anything.

When we got home, I decided to show her a TCU video on YouTube. Her brother Ken had let me know about it last week. She was fascinated to see the campus as well as some parts of Fort Worth. Like the music videos, the one we watched was followed by many others that were similar. She was well entertained and never worked on her iPad that was in the chair beside her.

After forty-five minutes to an hour, she took a break. While she was in the bathroom, I put in a DVD of her father’s family movies from the mid-1930s to the early-1940s. She was enthralled and whimpered as she watched. We were watching on the TV in our bedroom. Almost an hour later, she got up and walked over to me. She was very teary. She said, “Would you lie down with me?” When we got on the bed, she said, “I love my family. <pause>  My aunts and uncles. They’re all gone now.” I asked if she wished I hadn’t shown the video. She said, “Oh, no. I am glad you did. It just makes me sad. I said, “You must be glad to know that we have this video to remind us of them.” She said she was. I wasn’t surprised. The family movies have always been treasured memories. Of course, for Kate and for the other relatives her age or slightly older, they aren’t memories because they were taken either before they were born or when they were quite young.

While we were talking, we got a call from our daughter Jesse. We had a nice conversation catching up on her family. Kate greeted her when she called and said goodbye when we hung up. She was glad Jesse had called, but she did not participate in our conversation.

We took a break to get a bite to eat before the Super Bowl. When we got home, she waited for me to lead her to the back of the house. I said, “Would you like me to lead the way?” She said, “I could do it, but I would feel better if you did.”

She worked on her iPad for a while. Then she was tired and went to bed. I helped her get undressed and in her night clothes. She seemed especially confused. I had to tell her what to do every step of the way.

She went to bed around 8:30. I continued watching the Super Bowl until it was over around 10:00. When I got in bed, I thought she was sleeping soundly. Then I heard her whimpering. Periodically, she was shaking. I asked what was wrong. She said, “I don’t know.” I asked if she were afraid of something. She said she wasn’t. I asked her what I could do to help. She said, “Just stay with me.” That’s what I did. I gently stroked her back and talked softly about the good things we have experienced during our marriage. It wasn’t long before she was asleep, and so was I.

As I look back on the day, I don’t think there was anything she did that she hasn’t done before. Nonetheless, she seemed more like someone with dementia than she has in the past. During the afternoon, I received a phone call from a friend about our going with them to a concert in Asheville the last of May. I told him I appreciated the invitation, but I was very unsure because of Kate’s recent decline. At this point, I don’t know what to expect by then.

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Making Progress?

Kate was getting up on her own about 11:45 yesterday when I saw her on the video cam. I went to the bedroom and asked her how she was feeling. She looked puzzled and said, “Why do you ask?” I don’t think she thought she was sick. In fact, over the past nine days she has only recognized that she coughed and had to blow her nose and that, of course, only in the moment they happened. I had told her she had a cold, but she never remembered it. Day before yesterday, she definitely felt sick. That was when I heard her wheezing. I don’t believe she has had a conception of her being sick over a few days.

The good news is that I listened for her wheezing and didn’t hear anything. Then I asked her to take a deep breath and blow out through her mouth. She did that a couple of times. I still did not hear a wheeze. That made me feel a lot better. I didn’t want to see this advance to pneumonia. Of course, both of us have had the pneumonia shots, but we all know they don’t always work the way they are supposed to. Like many others, we had a light case of the flu last year even though we had the flu shot.

In addition to not wheezing, it was a good while before she coughed after getting up. Excluding her Alzheimer’s symptoms, she also seemed more normal. When I walked in she said, “Are you my daddy?” When I told her I was her husband, she couldn’t believe it. I decided it was best not to go into an explanation and suggested she take a shower. She asked where the bathroom was, and I took her. She took a long shower, dried off, and got back in bed.

After I got her up and helped her dress, she seemed fine. She wasn’t coughing. I decided to go out to lunch When I backed he car out of the garage, she coughed several times. Then I had doubts about going out. When she stopped, I decided to go ahead. Except for a couple of briefs coughs, she was fine at lunch.

Several times she asked where we were. Of course, she has been doing that for a long time. Now there is a new twist. When I tell her we are in Knoxville, Tennessee, she often asks, “What is Knoxville?” Then I explain that it is a city and that Tennessee is the state. It is only in the past few months that she has commonly asked this. It is another sign of the subtle changes that are constantly taking place. Mixed with her questions about our location, she also thought at times we were in Fort Worth. I suspected this on the way to lunch. She commented on remembering many things she saw along the way.

We came back home after lunch. When I got out of the car, she asked if she could help bring things in. I am sure she thought we were traveling and needed to unload the car. I told her I could get everything. Let me digress a moment.

(This is something new that I have mentioned before. Over the course of her Alzheimer’s, she has rarely asked if she could help me. In the past few weeks, she has asked if she could help me fold and put up the laundry, unload the dishwasher, and now unload the car. I also mentioned in a previous post that the other night she asked if there were anything she could do to help me. In that case, she was worried that I was carrying a heavy load and wanted to ease my burden. These may seem like very little things, but they are totally different from the norm the past ten years or so. She was letting me do things even before her diagnosis.)

She said she was tired and wanted to rest but brushed her teeth first. After brushing, she walked back to me in the kitchen. I could tell by the look on her face that she wanted to know what she could do next. That is a very common thing for her to do. I gave her the iPad and said she could sit in the family room and work puzzles, and I would be there in a minute. I went back to my computer. When I had finished what I was doing, she was walking out of the family room to the back of the house. I don’t believe she even sat down to work her puzzles. Shortly, I went back to one of the guest rooms where she was resting on the bed. She has definitely been more tired since catching her cold.

About two hours later, she came into the kitchen with her iPad under her arm and stood beside me. She didn’t say anything. This, too, is a very common experience. I knew that meant she wanted to get out of the house. We went to Barnes & Noble. We had been there fifteen minutes when Kate looked up at me and said, “I forgot they had this here.” I said, “What do you mean?” She pointed to her iPad and the puzzle she was working. By now I shouldn’t be surprised that she doesn’t recognize her own iPad, but I am. This was one of those times. I wonder what could have made her think it belonged to Barnes & Noble. This is similar to what frequently happens in restaurants. As we are about to leave, she often asks if the cup or glass is hers or belongs to the restaurant. It always makes me think about how she perceives the world. I simply can’t imagine how confusing for her it must be not to know where she is, what is hers, where we are going, and what she is supposed to do. There is so much I don’t understand. No wonder she gets confused.

We had another beautiful end to our day. I had chosen a YouTube video of choral music. In its cycle from one video to the next, we landed on a series of videos by a church choir. I didn’t see any identifiers as to what church or where it is located. I will have to check today. I do know that Kate was taken with everything they sang, and almost all their music was unfamiliar to either of us. She didn’t want me to stop the videos to go to bed. Finally, I turned them off and help her get ready to bed. I had to assure her that this was not a live concert we were watching, and we could pick where we left off tonight.