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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.

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Yesterday: A Good Day

It was 7:25 yesterday morning. I had just finished my breakfast and about to take the dishes to the dishwasher. I glanced at the screen of the iPad that is connected to the video cam in our bedroom. Kate was about to sit up in bed. I went back to help her get to the bathroom. When I reached her, she gave me a smile but didn’t speak. I asked if I could help her. She said she didn’t know. I told her it was a beautiful morning and directed her attention out the window to the back yard. She must have been a little groggy because she didn’t respond as enthusiastically as usual. I asked if she wanted to go to the bathroom. She asked where it was, and I told her I would show her.

On the way, she said, “I know this is a nice place, but I want to go home.” Normally, I say something like, “I’ve got good news for you. We are at home.”  That has often worked before but not as much lately. I decided to redirect her attention and suggested we first get to the bathroom and then get dressed.

When we finished, she again mentioned wanting to go home. I told her we first needed to get her dressed. She was obviously eager to get home because getting dressed went more quickly than usual. I know that wanting to go home is a common request of people with dementia. Some authorities interpret it as an effort to escape from the symptoms of the disease. I have always been somewhat skeptical about this interpretation, but I do recognize that Kate has often said things that I believe are references to her Alzheimer’s. They include things like “I’ll be glad when this is over.” “I don’t like this. I know you don’t like it either.” Each time she says these things I try to figure out what she is talking about. I have never been able to identify anything specific. That makes me wonder if she is referring to her general feelings, difficulties, or confusion that accompany the disease. As I observe more of this, I am beginning to accept the idea that wanting to go home is, indeed, a desire to escape her Alzheimer’s and return to a place that symbolizes comfort and peace. What happened after we left the house might also support that idea.

The moment she walked into the family room, she showed her first signs enthusiasm for the day. She noticed a pot of African violets and one with orchids. She also did her usual scanning of the back yard followed by looking at her ceramic cat, the photo of her father, and the photo of our son. She experienced an almost immediate shift in mood.

We arrived at Panera just before 8:30, the earliest we have been there in quite some time. I set up her iPad and opened the puzzle app and then got her a drink and a muffin. By 9:30, she was frustrated over her puzzles and also tired. I asked if she would like to go home. She did.

As we drove to the house, I wondered if she had forgotten about her desire to “go home” or if going to our home would be perceived as going to the home she had talked about earlier. As we drove up to the house, I mentioned it was ours. She said, “Oh, yes. I didn’t recognize it at first.” That is quite unusual. She almost always does even though she sometimes thinks of as where we are staying or a house in which we previously lived.

Once inside she wanted to rest. I turned on some soft music and brought my laptop into the family room and sat with her until just before the sitter came. This was a rare time when she actually went to sleep. I wasn’t surprised because she had gotten up so much earlier than usual. I am sure she slept at least an hour. When she awoke, she looked over at me and smiled. She was very peaceful and happy. We communicate a lot with our facial expressions. I could tell from hers and her voice that all was well. She was at home.

We talked about how nice it was to relax with the music in the background. In a few minutes, I asked if she would like to look at one of her photo books. She did. I sat beside her on the sofa, and we spent ten or fifteen minutes doing that before she was tired again. She rested another thirty minutes before the sitter arrived.

I am always eager to see how she responds to the sitter. I was happy to see that she greeted Cindy with outstretched arms. It was like she had seen an old friend. As I left, I felt good knowing that she had moved so well from wanting to get out of the house and “go home” to having a peaceful morning.

The bonus of the day came when I got back. I found her and the Cindy were engaged in conversation. Kate was quite talkative. They were discussing plants. It isn’t often I see Kate as a major contributor to conversation. I think I was happier than she was.

She was tired at the end of the day and went to bed earlier than usual after being frustrated with her puzzles, but the two experiences of our morning together and her experience with the sitter made it another good day.

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Living in Two Worlds: Ours and Her Own

I’m not really a writer; I just play one on TV (whoops, I mean this blog). What I mean is that I have neither the desire nor a special talent for writing. That would be especially true if I were writing fiction. Let me explain.

In this blog, I simply attempt to present an accurate account of what “Living with Alzheimer’s” is like for Kate and me. That doesn’t require any special creativity. It does demand that I pay attention to what is going on and write down my observations as quickly as I can. That has worked for a long time. While I wouldn’t say that every post does a particularly good job of that, I do think readers can get a pretty good idea of what life is like for us if they are regular or even periodic readers.

Recently, I find that so much is happening that I can’t remember everything and don’t have the time to make adequate notes during the day. That fact has made me appreciate the writers of fiction, especially those writing about the lives of caregivers and people with dementia. They always seem to have the necessary knowledge of dementia and the ability to write realistic portrayals of what it is like along with telling an interesting story.

For quite some time, I don’t believe I have given proper credit to the work of such writers because, after all, it is fiction. That couldn’t be as good as the “real thing” could it? However, I now feel that my own non-fiction account is somewhat compromised because of my failure to remember relevant events or conversations. There is simply too much coming my way to remember all of it. If I were a fiction writer, I could just create a situation that conveys the same message, but that has two problems for me.

First, is that it seems awkward to mix fiction and non-fiction. The reader might be confused about what is fiction and what is not. I don’t want that. Second, I don’t feel like I am sufficiently skilled to write a convincing fictional account of our lives. With that in mind, let me attempt to describe a significant change that is taking place.

From the beginning, Kate was quite normal. That’s how the story begins for all of us. In fact, she was so normal that she wasn’t concerned at all when she had her memory slips. Sometime later these slips became more common. I heard her say, “I think I have Alzheimer’s.” I gave her the typical, and truthful, response. “Everyone forgets once in a while. You’re all right.” We continued this exchange off and on for the next four years or so. She began to get lost when going somewhere in the car. We had several episodes in which I had to give her directions over the phone or drive to where she was so that she could follow me home. I began to recognize she was right. Finally, we talked with her doctor and went through the process of getting a diagnosis. It really was Alzheimer’s.

When we think of Alzheimer’s, or any other dementia, we tend to see an image of a person who is in the advanced stages of the disease. That is usually the “tip of the iceberg.” For much of the time, a person with dementia behaves quite normally. That is one of the good things I have learned since Kate’s diagnosis. That has enabled us to live rather full lives despite Alzheimer’s.

Now that she has reached the last stage (that can last years), we experience more dramatic changes. For the first time, I see what I have heard other caregivers talk about. It is a blending of what is normal and what is not, or, as I put it in the title, a blending of our world (yours and mine) and her own. She lives in both and shifts almost seamlessly between the two. Increasingly, she lives in both worlds at the same time.

Most often I have illustrated this blending with a story about Kate’s responding to me perfectly normally and then saying something like, “I love you. What is your name?” Now I see it in interactions like we had last night.

We had a good day though she wasn’t as talkative or cheerful. I don’t recall that she asked my name or hers the entire day. We came home from dinner, and everything was fine. I pulled up some YouTube songs from the musical Annie and then My Fair Lady. She enjoyed them. Then we started to get her ready for bed. We started with the bathroom. After brushing her teeth, she washed her face and arms. She rubbed them as though she were trying to get something off. That’s when she said, “Look. Can you see what I am doing?” I said, “Yes, you’re washing your face.” She gave me a look of irritation and said, “No, can’t you see that I am getting them.” (She frequently talks about things that are on her body. Often she gets one on her finger and shows it to me. I’ve never been able to see anything.) Having been through this before, I said, “Oh, yes, you’re doing a good job.” She said, “Well, it takes a while, but it’s worth it.”

From there we went back to the bedroom. Before getting into the bed she sat down and crossed one leg over the other so that she could work on her toes. This is one of her rituals in which she runs her fingers between her toes “to get them out.” She wanted me to watch. I was obedient. Then she wanted me to do it for her. I told her I had another way to do it. I got a hand towel and rubbed it several times between each toe. When I didn’t do it to her satisfaction, she told me I missed a spot and to do it over.

Then she got in bed and started pulling her hair. Again, she wanted me to watch. She said, “I want you to know what I am doing.” I knew what was coming next. She wanted me to do it for her. This time I told her I thought she did a good job and that I wouldn’t be able to do it as well. She accepted that. I should emphasize that during this entire time, she was talking normally as she always does. It was only what she said that was strange.

These days I never know how she will be from one moment to another. It keeps me on my toes in terms of how to respond to her. Fortunately, I’d say that more than 90% of the time when she is in her world, we are able to enjoy our time together. That’s a big plus for me. I know that isn’t true for all couples “Living with Alzheimer’s.” I do, however, believe that is a hopeful message for others traveling this same road. It is possible to live happily with this disease. Kate and I are not alone. I have read a number of accounts of other couples who have had similar success, but most have grimmer stories to tell. I wish everyone were as lucky as we have been.

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We’re Always Learning and Adapting.

LIVING WITH DEMENTIA: Please quit trying to make me remember something that I don’t. You see no matter how you keep trying to twist it to make me remember, I only get more & more frustrated & still don’t remember it.  (Written by a person with dementia)

After breakfast and my walk this morning, I went to my computer. I found the message above when I checked in on Twitter. It was timely for me. With the progression of Kate’s Alzheimer’s, I have to be much more careful how I respond to her. Things that have worked in the past don’t anymore. Being a caregiver requires greater attention to more things than most of us imagine at the point of diagnosis. That brings me to what is really on my mind today – Kate and her iPad.

As I have conveyed for years, working jigsaw puzzles on the iPad has been her primary self-initiated activity since she stopped her yard work and use of her computer. I have also pointed to the increased difficulty she has with her puzzles. With my help, she has been able to continue, but we have reached the point at which she can’t follow my guidance. For a while, the primary problem was getting into the store. Once that happened, she couldn’t do anything. It was easy for me to fix but impossible for her.

More recently, the problem has been her ability to locate the pieces she needs and to figure out where to put them. For as long as I can remember, she hasn’t wanted to ask for my help. I would simply notice that she was sitting with her iPad but not doing anything. Then I would help her. My first step was to drop the number of puzzle pieces from sixteen to nine although I go back and forth. My next step was to tell her about the edge pieces. In a nine-piece puzzle there are eight of these including the corners. That leaves only one piece that goes in the center. I discovered that it was hard for her to see the flat sides that identify an edge piece. Sometimes she seemed to get it, but most of the time she seems to have completed puzzles by trial-and-error.

The past couple of days her own approach has failed her. She wanted my help yesterday, and I tried again. This is tough for me because I do know that her lack of rational thought makes it impossible for her to understand, but she wasn’t ready to give up. She still wanted me to help her. I began by trying to get her to identify the four corner pieces. She was unable to recognize them. I put them in place. Then I spread the four edge pieces so that each one was beside the empty spot where it should go. I even put my finger on the piece and then on the space immediately adjacent to it. That was also too much for her. I put them in their places.

Now there was only one empty space directly in the center of the puzzle and one piece left. First, I put my finger on the space where it should go and said, “Can you see that this is an empty space?” She couldn’t. I asked if she could see that it was green. She could. Then I showed her that the whole screen background was green and that it was covered up when she put each piece in place. She was unable to comprehend what I was telling her. Then I asked her to give me her hand. I used her index finger to touch the space. I told her she wouldn’t see the green if she put the piece in that spot. I showed her the piece and asked her to put it in the space. She couldn’t do it.

All the while, I was thinking, “You’ve been doing some variation of this same lesson off and on for weeks. Isn’t it obvious that it’s not working?” That’s why the tweet at the top of this post caught my attention. In addition, I remember and old aphorism. “If you keep doing what you’ve always done, you’ll get what you’ve always gotten.”

I decided to do what I should have done earlier. I redirected her attention, something that is often recommended for caregivers. I reminded her that we had talked earlier about looking at one of her photo books and suggested we do that. She was ready. We looked one of the books for about fifteen minutes before she said she really wanted to look more but was tired. We stopped, and she lay down on the sofa for about thirty minutes before going to dinner. When we got home, she asked what she could do. I said, “How about working on your coloring book?” She liked the idea but had a hard time knowing what to do. She gave up after fifteen minutes and wanted to get ready for bed

So what am I going to do next time? The truth is I’m not sure although I know what approach I will take. Like everything else, losing an ability to do something occurs over a period of time. It comes and goes but gradually fades away. I believe there is still more time for her to enjoy the iPad. I want her to keep trying, but I am not going to be as persistent in trying to teach her what to do. I will look more and more to other options that will be easier for her. I’ll continue to try the coloring book. She has had some minor success with it. Maybe she will catch on to it. I told her there are no rules. She can color any way she wants.

As I have noted before, we are always learning and adapting. There will be more of that in our future.

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Cards, Anyone?

At 4:00 this morning, I got out of bed for a bathroom break. As sometimes happens, I didn’t go back to sleep immediately. Shortly after 5:00, we had the following conversation.

Kate: “Hey. <pause> Hey, where are the tards?”
Richard: “The what?”
Kate: “The tards.”
Richard: I took a guess. “The cards?”
Kate: “Yes.”
Richard: “They’re in the living room.”
Kate: “Well, get them.”

I went to the living room, located them in a drawer of the secretary and brought them back to bed. I handed them to her. In the dimness of the nightlight from the bathroom, she amazed me by easily opening the box and removing the deck of cards. Then she took the top card, placed it on the bed between us and said, “Your turn.” I said, “I don’t have any cards.” She took about half the deck of cards and handed them to me. I placed a card on top of hers. Then she said, “Something’s wrong.” She didn’t say or do anything else. She had closed her eyes. I said, “Well, I think it’s time to go back to sleep.” She was already gone. Our conversation and our card game were over.

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Art Appreciation and Kate

Many times I have given examples of Kate’s interest in “things of beauty.” Most often, this has involved all the “green” (principally trees, but also shrubs) she sees wherever we are, at home or on the road. It also includes the paper doilies she occasionally brings home from one of the restaurants we frequent. She keeps them in several places in the house. About half a dozen are on her bedside table where she enjoys them when she wakes up in the morning.

I have been able to appreciate what she sees in each of these things, but once in a while she surprises me. She did that just before the sitter came yesterday. I was seated across the room from her when I heard her say, “This is beautiful.” I thought she might be talking about the orchid plant on the table next to her. When I looked, I discovered that she was entranced by the remote control for the TV.

For years, I have had a periodic discussion about art with my two email friends from college, Tom Robinson and Bruce Morton. Tom is a retired philosophy professor, and Bruce started on his PhD in philosophy before developing other interests, one of which is photography. Our discussions revolve around the same question. “What is art?” I have always held the position that art, like beauty, is in the eye of the beholder. I know mine is a pretty loose definition, but it seems to work for me given the variety of creations that are officially called art and displayed in the world’s finest museums.

The beauty Kate saw in the cable TV remote was something of a stretch even for me, but I hold to my position. In fact, I think it’s an excellent example. Most, if not all art, seems to possess qualities that involve color, shape, texture, and subject matter. When I took a more careful look at the remote, I began to consider these qualities. I could see how she looked at it as a thing of beauty. It has forty-four individual buttons of different shapes, sizes, and colors and organized around different functions. The mount on which these buttons are located is a reasonably attractive shape and presents a contrasting color for the buttons themselves.

Yes, I think the remote is, or could be called, a work of art. I am sure that it’s designers would agree. They no doubt spent a long time working to make it both functional and attractive . It’s really an iconic symbol of our time. If someone like an Andy Warhol were to have painted a “portrait” of one in much the same way he painted the Campbell soup can, surely many would see if as art. I know I’ve seen stranger things at museums like MOMA in New York.

Of course, I am just playing fun and games with this topic, but there is a serious side to it. That involves the ability of people with dementia to see and appreciate things that most of us overlook. Kate’s life is filled with those. Wherever we go, she sees things that catch her attention. It is usually for something more understandable than a remote control, but also something that I was about to walk by without appreciating. Increasingly, I have come to believe that in the absence of her rational abilities, her ability to sense the world around her has increased to compensate for that loss. There may be a lesson in this for all of us without dementia. It’s a wonderful world, especially when we stop and consider the little things we take for granted. They may be of greater value than we thought.

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Kate’s Aphasia

I am not sure why, but among all the things that I’ve thought about, aphasia has been low on my list. I was well aware that if Kate lives long enough she would not communicate, but I didn’t think that she would begin this process now.

She has had some minor difficulty with her speech for about a year. The problem is progressing more rapidly now. Everyday words like pizza, olives, and hamburger are beginning to drop out of her vocabulary. Sometimes I joke about being her butler. She no longer knows what a butler is. Yesterday, I pointed to a fence that is being installed around a nearby hospital. She said, “What’s a fence?” At lunch, she saw her napkin and said, “What’s this?” I told her it was her napkin. She said, “What do I do with it?”

Some things are understandable. The other night we had dinner at a Mediterranean restaurant. She wanted a dessert and asked what they had. I told her they had baklava. She had no idea what that was even after I brought a piece to her. That is not something that is an everyday part of her vocabulary, so I’m not surprised that word is lost.

Quite often she knows what she wants to say but says the wrong word. A couple of days ago, she said, “I don’t want to swim.” She meant “I don’t want to sing.” While working on her iPad last week, she said, “I got two boys. She meant two puzzle pieces. Another time, she was joking with me and said, “I’m going to put it on your bed.” She meant my head. Another time, she said, “I want to yell you something” instead of tell you something. If I could remember, the list would go on and on.

It goes beyond her vocabulary. She is also beginning to struggle putting words together to communicate what she wants to say. She often starts to tell me something but stops because she doesn’t know how to express it. She looks to me to know. Sometimes I do, but often, I don’t.

So, how do I feel about this change? As you would expect, I am disturbed. Alzheimer’s began to affect our conversation very early. That was related to her memory loss. Since she could not remember things, she was left with little to say. For a good while now, she has talked more, but the conversation always revolves around a set of familiar things. We recite these over and over. Despite the repetition, I enjoy being able to converse with her no matter what we talk about. I especially enjoy seeing the pleasure she gets out of it as well. The thought about her losing this ability is one I don’t want to face.

Having said that, I stop and think about how well we have gotten along so far. It really is possible to enjoy ourselves without her having a memory. It would have been quite different if she had also lost her sight, hearing, and feelings for people and the world around her. That has carried us a long way. To adapt a phrase from “Swing Low Sweet Chariot,” I hope it will “carry us home.”

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Kate’s Latest Insurance Evaluation Interview

Tuesday afternoon, we had an appointment with a nurse representing the insurance company that provides our long term-care insurance. They send a nurse out every six months to conduct an evaluation interview with us. It is part of their due diligence effort to prevent fraudulent claims. I understand why they do it, but these are often uncomfortable interviews for Kate. They ask many questions that she simply can’t answer. In addition, she thinks many of the questions related to activities of daily living are silly. They include things like “Can you turn the shower on and off?” “Can you dress yourself?” “Can you touch your toes?” And “Do you have any problem walking?” Although Kate recognizes her dependence on me, she still thinks of herself as “normal.” A lot of the questions call that into question. To say the least, they annoy her. It is also awkward for me since I want to give them accurate information and don’t like to say that Kate can’t do things that she tells the nurse she is able to do. Most of the time the nurse looked to me, and I was able to shake my head or silently mouth to confirm or deny what Kate told her.

Coincidentally, I read a section of A Most Meaningful Life: My Dad and Alzheimer’s by Trish Laub that very morning. She and her dad had a problem with these interviews as well. Her father suffered depression afterward. She contacted the insurance company and told them they would not accept such evaluations in the future. I had this in my mind when the nurse arrived at our house.

This was the second visit for this particular nurse. I had spoken with her in advance of her visit and explained that Kate is now at Stage 7. She wasn’t familiar with the stages and didn’t remember having seen Kate before or that she has Alzheimer’s. I found that disappointing. As a nurse doing evaluation of someone with Alzheimer’s, it seemed to me that would be a given. On the phone she agreed not to go through the routine dementia test questions (“What day is it?” Who is the President?” etc.), but it became clear that this would have been a better interview if I had been answering the questions without Kate’s presence. Late in the interview, I asked if she and I could talk privately. Fortunately, she wanted to see our bathroom to check it out for handicap accessibility. We left Kate in the family room, and I was able to respond more openly to her remaining questions. She closed the interview after that. I will make sure that I exercise more control over the next interview.

Although Kate was quite annoyed at many of the questions, she didn’t immediately give any signs that it had a negative impact on her. She started to work on her iPad. Then she said she was tired and got in her new recliner to rest. It wasn’t long before she asked if we couldn’t go out to get something to eat. It was only 3:30, but we hadn’t been to Barnes & Noble in several weeks. I took her there. She didn’t say anything more about eating, so I only got her something to drink. In a short time, she wanted something to eat. I got her a cookie. As soon as she finished it, she wanted to go home. She had been working on her iPad and was frustrated, but it also seemed like she was restless and needed a change. I don’t ever recall her being this way before. Coming off the interview, I couldn’t help but wonder if the experience might have affected her mood. There is really no way to know, so I am withholding judgment; however, the change did occur after the interview was over even if it wasn’t immediate.

We were home about forty-five minutes before going to dinner. She enjoyed the dinner but wasn’t as cheerful as usual. When we got home, she worked on her iPad for a while but got frustrated and quit. She decided to go to bed. While brushing her teeth, she said, “Maybe I’ll be all right in two or three days.” I said, “You’ve had a rough day.” She agreed.

I am still left wondering how much, if any, the interview influenced her. I know that she has trouble working her puzzles anyway, but she was especially discouraged. The good thing is that she still felt optimistic that, perhaps, she would get better. This is not unusual. Many times, when she is trying to remember things, she mentions improving in the future.

Once again, I take note of the fact that even at this stage of her disease, she knows something is wrong with her and is still bothered by it.

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Another Morning of Confusion

At 7:25 this morning, I was taking my morning walk inside the house while listening to All the Light We Cannot See when I heard Kate call my name. When I reached her, I found that she was having a different kind of confusing experience than she had yesterday. It was, however, like several other experiences she has had in the past. She said, “What should I be doing?” Her past experiences were somewhat different in that she has had a sense that she was supposed to be someplace or had specific obligation she had to meet. This time she didn’t mention anything that would suggest that. It was more like waking up and simply not knowing what she should do.

I explained that it was still early, and she had no obligations until lunch. I told her she could go back to sleep if she wanted to. She looked relieved and indicated she would like that. I also mentioned that sometimes she liked to go to the bathroom, but she wasn’t interested. She repeated her question several times, and I gave her the same answer. Then I asked if she would like me to sit with her while she rested. She did, and that is where I am right now.

There was one way in which today’s confusion was similar to that of yesterday. Both days she was bothered more than most days when she is confused, but she was not as disturbed as she can be when she is having an anxiety or panic attack. I am glad neither experience was as severe as it can be; however, it does bother me when she seems at all disturbed. So far, I have been able to comfort her by what I say and the way I say it. Of course, just being present for her seems to make a difference as well. At least for the time being, I am optimistic that I will be able to put her at ease. I hope I don’t have to eat those words sometime in the future.

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This Morning

I woke up at 4:30 this morning and couldn’t go back to sleep. At 5:10, I decided to get up. I like to get up at 6:00 or shortly thereafter, but I got up at 5:00 or 5:30 most of my working life, so it’s not such a bad thing.

After I was dressed for the day, I put a load of clothes (mostly towels) in the washer and was about to fix my breakfast when I realized I had forgotten to bring Kate’s iPad from the bedroom to charge it. When I walked into the bedroom, I saw that she was awake. I walked over to her and could tell she was having one of her moments of confusion. It fell short of what I would call an anxiety attack but more serious than her usual confusion.

I said, “Good morning. Could I help you?” She said, “I don’t know. Where am I?” I told her I had good news, that she was in her own home where we live. She said, “Huh.” I told her again. She said, “Who are you?” I said, “My name is Richard, and I can help you with anything you need.” She said, “What am I doing here?” I said, “This is your home. You live here.” She said, “What do I do now?” I said, “It’s early in the morning. I think you should go back to sleep.” Once again, she asked my name, where she was, and what she should do. After telling her I thought she should go back to sleep, I asked if she would like me to stay with her. She was relieved to hear me say that and said, “Oh, yes.”

I went back to the kitchen where I poured myself a glass of V8, and a cup of granola, picked up my laptop, and iPad and took a seat beside her side of the bed. I put on some soft music. She was asleep in less than fifteen minutes. I was just beginning to think about going back to the kitchen when Kate said something. I didn’t understand and got up and stepped closer to her.  She pointed to my shirt and said, “Do you want to take that with you?” I told her I did and sat back down. I have no idea what prompted her to ask me that, but she seemed very much at ease. I felt relieved. I stayed a little longer to make sure she was asleep again. Then I moved back to the kitchen. I finished the granola and V8. That will be my breakfast instead of the eggs I usually fix.

At 7:20, I heard Kate’s voice on the video cam. She said, “I wanna get out of here.” I rushed to her bedside. She was smiling. I told her I loved her and she said, “I love you too.” I asked if she was all right. She said she was. Then I mentioned the time and asked if she wanted to rest a little more. She said she did. I told her I would be in the kitchen if she needed me, and I left. It was a dramatic change from just over an hour before, but a change I like to see. Her saying “I wanna get out of here.” didn’t match the way she seemed when I got to her, but it isn’t unusual for her to say that. In fact, just yesterday, she expressed it rather emphatically. I’ll save that for a later post.