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I May Not Understand It, But a Lot Is Going On in Kate’s Brain.

Over the past three days, Kate has displayed a variety of symptoms that illustrate how active her brain is even if it isn’t working the way it is supposed to. It began Friday morning when she experienced the kind of fright that kept her in bed all day a couple of times in the last three weeks.

Based on the previous experiences, I decided I would be more relaxed this time. When she said she didn’t want to get up, I lay down in bed and talked with her a few minutes. I had already put on some music. She liked it and asked me not to talk so that she could hear it. We listened a little while, and she began to perk up. That made me think getting her up might be easy. I was wrong. She told me she was scared. When I asked what she was scared of, she said she didn’t know. I remained in bed until she appeared to be asleep. Then I took a seat in a chair beside the bed.

I decided not to worry about our having lunch together. The sitter could do that. Half an hour before the sitter arrived, I told Kate the sitter was coming and wondered if she would rather that I or the sitter help her get up for the day. She said she would prefer that I do it. That was two hours from the time I had started to wake her.

She was able to get up without a problem and was ready when Cindy arrived. Kate thought I was going with them and gave me a disapproving look when I told her I wasn’t, but she didn’t say anything. I helped her into Cindy’s car, and they were off.

We went to a different pizza place that night. The hostess asked if we wanted a table or booth. Kate has been having trouble sliding across the seat of a booth, so I requested a table. Before we sat down, Kate said she didn’t like the table and pointed to a nearby booth. That’s the first time I recall her indicating a preference. I went back to the hostess stand and asked for that booth.

I almost always take her to the bathroom at home before going out but had not done so this time. Right after the server took our order, Kate wanted to go to the restroom. I asked the hostess if it was a restroom for one-person knowing that is better in terms of my going with her. She said it had three stalls. I discretely explained that Kate has Alzheimer’s, and I like to help her. She checked and found no one was in there. She said she would watch for anyone else who might want to use it. I accompanied her, and all went well. I was relieved. I feel much better when we can take care of toileting at home.

Back at our booth, Kate was concerned someone was out to get her. I asked who, but she didn’t know. She didn’t say anything more and quickly forgot. The balance of the day went well.

At 2:30 Saturday morning, she woke up and wanted to know what she should do. I told her it was the middle of the night, that she had no obligations and could relax and go back to sleep. We went through a number of variations on the same question and answer for about fifteen minutes before she went back to sleep.

At 5:00, she was awake again and wanted to go to the bathroom. I got up to help her, but she changed her mind. We talked for a short time before we were both asleep. We were going to a luncheon following a funeral mass for someone we know from our music nights at Casa Bella. I was concerned that I might have difficulty getting her ready. She surprised me as I began my morning walk. I saw that she was getting up. I went to her and found that she was wide awake. We made a trip to Panera and returned home where she rested.

While resting, she chuckled a good bit. When I asked what was so funny, she said, “You know.” A little later, she said, “Don’t you like the ‘try.’” I had no idea what was so funny or what she meant by “try.” Her confusion with words is getting worse. The easiest one for me to understand is “shows” for shoes. Sometimes she uses “shows” for socks.

I was a little concerned about the luncheon because I expected a crowd of people she wouldn’t know. That turned out not to be a problem. We were seated with two people we have known for a long time. Of course, Kate did not remember them, but she handled things well. She did ask a lot of questions that were obvious signs of her memory problems. These involved asking the name of the restaurant several times while sitting with the daughter of the woman whose mother opened the restaurant eighty years ago. We have been sitting her three nights a month for six years. The people at our table were very understanding.

It was very noisy. At first, that startled Kate, but she quickly adapted. When we left, she said she had enjoyed it. I was surprised because it was just the kind of situation I try to avoid because it can be so hard for her.

When we returned home, she wanted to rest again. After a while, I noticed that she was uneasy. I asked if there was anything I could do to help her. She said there was and began a lengthy conversation similar to others we have had. She was worried about a young man. She said that I know him, but she couldn’t think of his name. I tried guessing. That didn’t help.

What I learned was that she wanted to offer some financial help to this man. As she talked, she moved from talking about this specific man to a program to help promising boys and girls who did not have the financial resources to enable them to continue their education after high school.

She wanted my advice. This was very much like a recent middle-of-the-night conversation. She talked about helping people in her hometown of Fort Worth and was concerned about locating young people and a person or organization to administer the program. I gave her several ideas, and she asked if I would coordinate everything. I agreed, and she felt better about.

There is more, but I will continue in another post.

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Something Old, Something New

For the past few years, Kate as worked jigsaw puzzles on her iPad while I watched the evening news. Now that she is less able to work her puzzles, we are trying to adapt. Without her iPad, she has little to do in the evening. When we return home from dinner, I usually ask if she would like to work on her puzzles. Sometimes she does; sometimes she doesn’t.

Last night, she asked if there was something she could read. What she was really asking is “What can I do now?” I always mention her puzzles, one of her family photo books, watch the news with me, or watch musical performances on YouTube. Last night, she said she wanted to work puzzles. I brought her iPad to her, but she changed her mind. Then I handed her the “Big Sister” album her brother Ken had made for her. This has been a big success since he gave it to her almost two years ago.

As she looked at it, she said, “What do I do?” I told her she could look through it and enjoy the many pictures of her and Ken and their family. She didn’t understand. (This is an experience that happens frequently now. For example, it happens when I give her the toothbrush to brush her teeth. Sometimes it occurs when I open the car door for her.) I tried to explain by commenting on several pictures.

This turned out to be one of those times when she thinks her photo book works like her iPad. She touches a photo and waits for something to happen. Once or twice I have observed her looking at other albums or magazines and doing the same thing. In those instances, she didn’t seem bothered by the fact that nothing happened. That wasn’t true last night. She wanted me to help her, but I found that an impossible task. Nevertheless, she was interested, and I really wanted to help her.

I told her the first thing to know was that touching the picture won’t do anything. I explained that she should just look at a picture and enjoy what she sees. I gave her a chance to try it. She immediately touched a photo and waited for something to happen. I reminded her that nothing would happen. I knew my efforts were likely to fail, but I spent about ten minutes trying to teach her how to enjoy the photos.

Finally, I suggested that we turn on the TV and pull up some Andre Rieu concerts on YouTube. That turned out to be a winner. Music came to the rescue again. I didn’t get to watch the news, but I took my shower and watched with her. We spent almost two and a half hours with Andre. It turned out to be a good evening after all.

As useful as some of the old tools in my box can be, it’s always nice to have new things I can add. Last week, I saw an ad on Facebook that said the company could compile a book of the photos I had posted over the past decade. The idea intrigued me, and I made the purchase immediately. The book arrived on Monday, and I was looking for the right moment to show it to Kate. Yesterday afternoon was a good time. She has rested about two hours, and it was still too early for us to do to dinner. I told her I had something to show her, and we both took a seat on the sofa. It’s a big book with 550 photos, so I was unsure how far we would get. As it turned out, we came close to looking at the whole thing. I was surprised. Recently, she has gotten tired when we have looked at some of her other photo books. Personally, I did find it a lot to go through in one sitting, but I was encouraged by her response and will look forward to looking at it again.

If any of you are thinking of having a book like this, I would suggest you do it more carefully than I did. During the ordering process, the company gave me a chance to edit. I thought it was too much trouble. For my purposes, I still think that was true. If I were doing it again, I would go through the entire book and delete unwanted photos and also change the order in which some of them appear. In my case, the book meets my needs. It gives me one other thing I can use with Kate to make her day and mine more enjoyable.

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No “Sleeping-In” Yesterday

Following two consecutive days of not wanting to get up, Kate awoke early yesterday and wanted “to get out’a here.” Except for believing she was in an unfamiliar place, she was in a good mood. For me, one of the good things about her wanting to get away is that it makes it easier and faster to get her up and dressed. We were at Panera before 10:30. She worked on her iPad but focused mainly on her blueberry muffin and wanted another. I told her we would be going to lunch in thirty minutes and asked if she could wait. She was agreeable.

The afternoon was our usual one. She rested a couple of hours. Then I suggested we look at a photo album of pictures taken when our children were pre-school age. We did that for a while before our daughter called. We had a nice conversation and Kate handled it well. After the call, we returned to the photo album, but Kate wanted to rest a little longer.

When I suggested our going to dinner, she didn’t hesitate getting up. That is normal. I don’t recall her ever having trouble getting up after resting in the family room in the afternoon. I wish I could say that about the morning when she is in bed.

She was confused about where she was as well as who I was but wasn’t disturbed. She asked my name and asked if we would be coming back for the night. She also said a few other things that made it clear she thought we were in someone else’s house.

At dinner something came up that made me mention our marriage. Kate was shocked. I was surprised at her reaction because we had been talking so comfortably about our relationship. It wasn’t simply that she was shocked. She couldn’t imagine how it was possible that she could have forgotten something like that. Fortunately, I was able to divert her attention. She was fine after that, but I felt bad. I intend to be more careful about that in the future. I think I have been unconsciously trying to keep that memory alive. Now I am beginning to believe that it may be time to let it go. I’ll just assume that she doesn’t remember and not try to remind her. There are enough incidental reminders when we browse through her photo books and interact with other people.

We had one of those middle-of-the-night incidents at 1:30 this morning. I woke up as Kate sat up on the side of the bed. I got up and went around to her side to help her up. She seemed wide awake and cheerfully greeted me like someone she might have recognized but not known. It wasn’t long before she said, “Who are you?” I told her my name but said nothing of our relationship. She didn’t ask.

I asked if she wanted to go to the bathroom. She didn’t. She asked about “the others.” I told her we were the only ones “here.” She seemed surprised but didn’t question me. I asked again if she would like to use the bathroom. She asked where it was. I told her I would show her. We usually hold hands, but she didn’t want to this time.

When we reached the bathroom, I stepped in and turned around to direct her to the toilet. She showed no interest in coming in. Instead, she was obsessed with what time she should “be there.” I never found out where “there” was, but it was important to her. I told her she didn’t need to be there until “1:00 tomorrow.” She was surprised and asked about today. I told her it was the middle of the night and that she would need her sleep to be ready for tomorrow. She went back to the question “What time do I have to be there?” We went through a repetition my standard answer and her standard question. A couple of times she asked what time she would have to leave, but her emphasis was on what time she had to be there. She couldn’t remember and kept asking.

Finally, she used the toilet. When she was finished, she noticed two pictures on the top of a nearby cabinet. One was a photo of my mom and me. She pointed to my mom and wanted to know who she was. When I told her who she was, she said, “I remember her. She is very nice.” Then she asked about my sister. I don’t have a sister but said she was fine. Then she said my sister was very nice and that she liked her. Before getting back to bed, she commented several other times about my mom and sister and how nice they were.

Once in bed, she was still wide awake for a short time. I tried not to encourage much talking, and she soon drifted off to sleep. She is still sleeping as I finish this entry. On the video cam I just saw her moving a few minutes ago, I will check on her and see if she is ready to get up. That would be nice. I don’t have Rotary today, and the sitter is coming at 1:00 rather than noon. If she gets up soon, we would be able to have lunch together. That would be a good way to start the week.

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Our First UTI Test

Two days ago, I called Kate’s doctor. I wanted to get her thoughts on Kate’s recent changes. I received a quick callback from the doctor’s nurse who said that we ought to test for a urinary tract infection. I am no expert on this subject but told her that it didn’t seem as though she had a UTI. Out of the past fourteen days Kate has had problems on only four days. The inconsistency made me think it might simply be a function of her Alzheimer’s. In addition, her delusions, although they might have been somewhat more frequent, were pretty much in line with the past. She made a point that I can easily understand. She said that symptoms can vary from one person to another. This is one of my mantras. I agreed to take them a urine sample that afternoon.

First thing yesterday morning, I received another call from the nurse informing me that the test was negative, so we can rule out the UTI. She also said the doctor had some time at 2:00 on Friday and would be happy to see Kate and me or just me if I would prefer. That’s a day for the sitter, and I would really like to have a conversation with the doctor without Kate’s presence. I’ll see her then. In the meantime, I think I will write a brief summary using this blog as a source and send it to her via our online portal. I have been using that for years to provide updates before each of Kate’s appointments. I don’t know how helpful that is, but I feel more comfortable that I will give her a better description of our situation in written form than I might do in a face-to-face conversation.

Yesterday went pretty well. Kate was still tired and didn’t want to get up in the morning. She was in a good mood. It took about thirty minutes, but I was successful in getting her up to join me for lunch. As she has done on a number of other occasions, she wanted to lie down again right after using the toilet and washing up. I reminded her that we were going to lunch. I started to help her dress when she wanted to lie down again. I didn’t stop her. We continued to talk for a few minutes before I mentioned that we would need to get ready for lunch. She got up willingly, and we were off.

She was uneasy on her feet walking through the house, down the steps to the garage, and from the car to the restaurant and back. I started investigating walkers yesterday although her inability to follow directions or to learn new things could be a handicap. That’s not to mention the fact that it has to be a walker suitable for someone who is unstable. I have serious doubts that she would be able to use one. This may seem strange to those who haven’t had much experience with someone with Alzheimer’s, but I am finding explanations for almost anything are challenging or impossible for her to grasp. For example, Kate is losing the ability to do simple things like using the toilet, brushing her teeth, where to put her napkin at a restaurant and many other things. She is very dependent on me for help with everything. There is no way I would trust her with a walker unless I were right with her every step of the way.

As usual, she rested immediately after returning from lunch. She was in her recliner when the sitter arrived. When I returned four hours later, she hadn’t moved. Fifteen minutes later, we went to dinner. She went to bed soon after we got home. She was tired and went to sleep. My own interpretation of her being so tired is that it is normal for late stage Alzheimer’s and not something for which we are going to find a solution. I am eager to talk with her doctor tomorrow.

The rest may have caught up with her because she was awake at 5:15 this morning. Her mind was blank. I heard her say, “Who are you?” I gave her my name and told her I was someone who could help her. This began a thirty-minute conversation that went back and forth with her asking the same questions and my giving the same answers. (Who are you? What do you do? Where am I? Do other people live here?) When I told her we were in our house, she wanted to know how we paid for it. That led to how we got money to live. It was particularly confusing for her when I told her we were both retired. The toughest question to answer was “Why don’t I remember any of this?” I told her she sometimes wakes up and doesn’t know anything. Then she goes back to sleep and is all right when she wakes up. Shortly after that she did fall asleep, and I got out of bed just after 6:00.

A few minutes after 7:00 I was about to take my walk when I heard her say something. I checked on her. She wanted to get up. She still didn’t know who I was or where she was. She just wanted to “get out of here.” She must have because she had been to the bathroom, dressed, and taken her pills before we left the house for Panera at 7:45.

An hour later, we were back at home where we started to look at one of her family photo books. We didn’t get beyond the cover photo when she said she was tired and wanted to rest. I’ll be eager to see if I have any problem getting her up for lunch. I am especially interested in getting there early so that we can get her back for a 1:30 hair appointment.

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Beginning Our 10th Year Post-Diagnosis

 

Tuesday, the first day of our 10th year Living with Alzheimer’s” started early and with some confusion; however, the day was punctuated with “Happy Moments” as well. About 5:30, I heard Kate chuckle. I chuckled back, and she responded with more chuckles. Then she started pointing to the ceiling moving her arm from one side of the room to the other. As she did this, she commented on “things” (that were not really there) that she liked. It wasn’t clear to me whether she was asleep or awake. When I said something to her, she responded. After a few minutes, I decided she was awake. She then immediately closed her eyes and went to sleep. This was strikingly sudden. It makes me think she really had been dreaming all along.

At 5:50, I told her I was going to get up. She told me not to leave her. She didn’t seem afraid, but she did say, “I don’t know how to say it, but I feel (paused while thinking of the right word) safe with you.” I stayed with her another thirty minutes before telling her I was going to get up and asked if she would be all right. She said she was fine. After I was dressed, she was still awake. I mentioned I was going to the kitchen and to call me if she needed anything. She said that would be all right, but she wanted me to come back and sit in a chair beside the bed.

As I was preparing to put my breakfast dishes in the washer, I heard her call. She wanted to go home. I told her I would take her. I got her to the bathroom and dressed quite easily. During that time, she said she wanted to “get out of here.” She also mentioned girls that were either here or would be coming. This also came up in the afternoon.

We went to Panera arriving about 8:15. That is very early for us. She worked a little on iPad puzzles but stopped to eat her muffin. She was tired and wanted to go home before 9:00. She rested for a couple of hours before we went to lunch. She was very talkative. Most of her conversation dealt with our marriage and also her feelings about our being a good match. At one point, she said, “You know we are so different.” She wanted to continue, but she didn’t know how to express her thoughts. I said, “But we’re so much alike on the things that matter.” She said, “Exactly.” It was a cold day, and we took a few minutes to get our coats on before leaving. Kate also had gloves. She asked if I could take a picture and wanted to make sure I got the gloves in the photo. It’s unusual for her to request a photo of herself. She also asked me to take one at another restaurant a few weeks ago. She wanted a picture of the two of us, and I took a selfie before we got in the car.

When we got home, she rested for an hour. I asked if she would like me to read something to her. She did, and I picked up the photo book of her mother’s family and read several things about her grandfather. She loved hearing about him and was most impressed. I’ve read this to her before, but this was the strongest reaction she has had yet.

Then I read a section that dealt with Battle Creek where her mother lived until marrying Kate’s father and moving to Texas. It focused on the work of the Kelloggs in the development of cereal at the Battle Creek Sanitarium (“The San”) where her grandfather was a doctor. She kept talking about “him.” I didn’t know whether she was talking about her grandfather, John Harvey Kellogg (CEO of The San), or W. K. Kellogg (who left the San and established the cereal company). She thought I had known “him.” I told her that her grandfather had died before I was born and that I was a child when the Kellogg brothers died. That didn’t penetrate at all. She kept saying, “And you knew him.” She seemed impressed. I am sure she felt I knew him because I was reading about all three of these men. To her, it probably sounded like I was telling her a story from my first-hand experience.

She finally tired and wanted to rest again. It was only a short time before she started talking and continued for an hour. I made some facilitating comments, but she didn’t appear to need them. She talked about something that is a variation of a topic she has talked about a number of times before. It always involves her, or our, helping people. A large portion of the previous conversations have involved educating women in impoverished parts of the world. This time she talked about a program in which we were already involved. It was designed to provide a broad range of education and job training for immigrants to the United States. She mentioned a selection process to determine those who would benefit most. The training itself was rather comprehensive and dealt with information about US culture, training for job interviews, and assistance in locating job opportunities that would match the skills and interests of the students. I was amazed at the details she brought up and the reasons each of these things was necessary.

The next surprise of the day came as we were about to leave for dinner. Without any prior signs or indications, Kate became very worried about not having delivered something to a man whose name she didn’t know. From what she said, she thought she was to deliver refreshments for a reception of some kind. She couldn’t tell me any specifics, but she became distraught over her failure to do what she had promised. As we drove to the restaurant, she wondered if I might be able to call him and work out a way to get it to him. After parking the car, I pretended to call him and that he had told me that the reception was actually the next day and that she had no reason to worry or apologize. This effort was unsuccessful.

As we walked up to the restaurant, the hostess opened the door and greeted us. Kate tried to act as though nothing was wrong, but it didn’t work. It did begin a process of diversion that got her mind off of what she believed was a failure to deliver on a promise. This process involved our conversation with our server, chatting briefly with a couple we know who sat at the table next to ours, and eating. Long before we finished our meal, she seemed to have forgotten the entire thing.

I had one more surprise at 12:30 yesterday morning when I heard her call me by name. I looked up from the bed to see her standing in the doorway to our bedroom. I quickly got up and went to her. She was very upset. She had gotten up to go to the bathroom, something that is exceedingly rare. To the best of my knowledge, she has never gotten out of bed without my noticing. I got her back to bed and then went to turn off the lights in the hallway. That’s when I discovered she had been walking around the house. Lights were on in two other bedrooms, family room, living room, dining room, and kitchen. She apparently came out of the bathroom and couldn’t remember how to get back to our bedroom and spent an unknown amount of time going through the house trying to find me. The good news is that she was able to calm down once she had located me. Another crisis was over. Our tenth year “Living with Alzheimer’s” is off to quite a start.

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Unanticipated Issues

Yesterday things were going well. Kate woke up early, showered and dressed without any difficulty. I was especially pleased because we were going to visit friends in Nashville, and I was eager to eat an early lunch before our departure. We were also early enough to get to Panera for a short time and get back home for Kate to rest another hour.

Lunch went well until very near time to leave when she started looking for her napkin. At first, I didn’t know what she wanted because she couldn’t remember the word for napkin. When I asked if she was looking for a napkin, she said she was. I pointed out that she had put under her plate with her utensils. She didn’t understand and said, “Where is it?” I pointed to it. She pointed to her salmon and said, “This?” I told her it wasn’t and reached across the table to point at it. She didn’t see it. Then I put my hand on it and said, “This is it.” That didn’t work. Then I asked her to pick up her plate. She didn’t understand. I picked it up and put it to the side. Then I showed her the napkin and told her she could wipe her hands with it. That didn’t work either, so I said, “Let me show you.” I got up and went to her side of the table where I picked up the napkin and started wiping her hands. Her mood changed immediately. She said, “I wanna’ get out of here.”

It was a frustrating situation for both of us. I didn’t have any trouble understanding that she was having two problems, both of which are directly related to her Alzheimer’s. One is her vision. The other is her ability to understand directions. I was trying hard not to show my frustration, but I wasn’t successful. As we left the restaurant, she said she couldn’t do anything right. I thought she was upset with me, but it turned out she was only thinking about her inability to follow my instructions. I felt guilty for making her feel that way. After we had been on the road to Nashville about fifteen minutes, she was fine again.

This episode is a good example of how quickly things can change. It is also a reminder of something I already know. I need to be very careful how I respond in situations like this. She is very much aware of her problems, and I don’t want to diminish her sense of self-worth.

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A Good Start and Finish

Our routine was altered a bit yesterday. Kate called for me about 9:00. She was smiling when I reached her bedside. She wanted to go to the bathroom. She was confused but did not seem to be bothered. She just wanted my help and accepted it through the whole bathroom routine including showering and getting dressed. It was early enough to get her to Panera for a muffin and get back home just after 11:00. That worked out well because I had asked a church friend to take her to lunch. I had a lunch meeting and needed to leave by 11:30. Kate was tired and wanted to rest a while. I explained to our friend that she had gotten up early and might want to rest a little longer before they went to lunch.

When I got home, Kate was still resting. The friend said that she had tried to get her interested in going to lunch, but she didn’t want to. The friend said to Kate, “I think you wanted to wait for Richard.” Kate nodded. I was surprised because this is someone that Kate likes very much. In fact, everybody I know likes her. My only explanation is that while resting, she completely blanked on who the friend was after being excited about having lunch with her. I know that happens with me. It still surprises me when we have been talking about our  marriage and children and then says, “Who are you?”

It was after 2:00, and I took her to Chick-fil-A for a chicken sandwich. It turned out that she had a hair appointment shortly thereafter. As the stylist walked her to the front to meet me, Kate asked where I was. I stood up to greet her. She was greatly relieved to see me. I have become a security blanket for her.

She rested at home for an hour before we went to dinner at Casa Bella for jazz night. We sat at a table for twelve. She must have felt a little left out. She tried hard to participate. Then she retreated for the remainder of the dinner. The music was good, but neither of us was taken with the singers themselves.

When we got home, it was time for bed. Soft music was playing, and we were both relaxed and happy.

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More of the Same

I had just passed the halfway point in my walk at 7:35 yesterday morning when I saw that Kate was about to get up. I went to the bedroom and discovered that this was another morning of the same kind of confusion and anxiety that I have seen more of in the past ten days. It seems like it’s becoming a pattern. She looked very confused. I am sure she didn’t know me, but I didn’t say anything that might have prompted her to tell me.

I told her I was there to help her. She said, “I don’t know what to do.” I said, “Usually you want to go to the bathroom.” She asked why, and I tried, unsuccessfully, to explain. Then I asked her to come with me. She agreed to go with me to the bathroom although she had a look of apprehension on her face. As on other mornings, she periodically said, “Help me. Please, help me.” I assured her that I would. She was very dependent on me to help her with everything. From the bathroom, I took her back to bed. She said, “I wish you could stay with me.” I told her I would be happy to stay. I went to the kitchen to get my things and returned to the chair right beside her side of the bed. She was asleep very quickly, and I returned to my walk.

The rest of the day went well. She was happy to see the sitter and happy to see me when I got home. She did say she wanted to go home. I told her I would take her. We went to dinner. She never said another word about going home.

She watched the news with me but looked rather bored. I asked if she would like to get ready for bed. She did. I put on a YouTube video of a concert of music from My Fair Lady. She enjoyed it. As usual, she was still awake an hour after the concert but was very much at ease. We ended the day on a happy note.

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Continued Mixture of Confusion and Happiness

Yesterday morning as I was taking my walk around 7:20, I heard Kate scream. I went to the room. She was upset but not as much as I would have expected from her scream. I am guessing she must have had a bad dream because she acted like she wanted to go back to sleep. I asked if he would like me to stay with her. She did, and I remained in the bedroom for about thirty minutes. Then I continued my walk.

She quickly went back to sleep and didn’t wake up until 10:20. At that time I heard her say, “Hey.” Her voice was soft, and I wasn’t sure that I had heard her. When I reached her, she confirmed that she had called. We talked a few minutes, and she seemed all right. Like the day before, I soon learned that she was confused. Before getting out of bed, she said, “Who are you?” I gave her my name told her that I was her husband. She reacted strongly to that, and I said, “I am a good friend, and I can help you with anything you need.”

We walked to the bathroom, but she was a little uneasy with me when she used the toilet and when she showered. She was resistant to my helping with her shower. She said, “Don’t ever tell anyone about this?”

The shower turned out to be good therapy. She enjoyed it and said she felt better when she got out. She was still guarded. She was comfortable enough to let me help, but she was also trying to keep her distance from me. A funny thing happened as I helped her dry off and get dressed. As she often does after a shower, she wanted to lie down on the bed. Then she surprised me by saying, “Don’t forget my (unclear, couldn’t think of the right word).” She pointed to her toes. She had already run her fingers in between each toe. Now she wanted me to do it.

When we left for lunch, she seemed quite comfortable with me, but I don’t think she recognized me as her husband. During lunch, I eased into some comments that would suggest we had known each other a long time. Our server told us she would be leaving to spend a semester in Berlin. I mentioned that we had visited there and that she would like it.

When she stepped away, I talked to Kate about some of the places we had traveled. I deliberately failed to mention our marriage. She seemed to accept what I said without any concern or confusion or fear that she didn’t remember these experiences. At little later, I mentioned that our son was planning a trip to see us. She seemed fine. I never asked if she knew I was her husband.

We had a very brief sad moment in the car on the way home. We had stopped at the pharmacy to pick up a prescription. As I came to the exit from the parking lot, she saw a stop sign. She tried to read it but couldn’t. I told her it said, “Stop.” She said, “What’s that?” I explained. She looked sad and said, “I don’t like to be a ‘duppy.’” She meant “dummy,” of course. I said, “You’re not a dummy.” You’re a smart gal.” She got excited and said, “Hey, and I didn’t even pay you to say that.” It’s been almost nine years since her diagnosis. She forgot a long time ago that she has Alzheimer’s, but she still knows at this late stage that she’s “not right.” She wants to be but can’t. That’s sad.

That moment really was brief. It lasted only minute. When we got home, she rested for a couple of hours in her recliner. As usual, her eyes were open off and on. I’m not sure how much she actually slept. I do know that she was quite calm and seemed happy. Halfway through her rest, I asked her if she was relaxed. She was. I told her I was as well.

A short time later, she accepted my offer to read something to her. This time I chose something different. I picked up the photo book that she and her brother had made in the early days after diagnosis. It focuses on her mother’s family who lived in Battle Creek. At the end of the book there is a section that focuses on the Kellogg brothers, Battle Creek as “Cereal City,” and the Battle Creek Sanitarium where Kate’s grandfather was a doctor. I read for about forty-five minutes. She was interested and asked me to re-read much of it as she tried to take in all the information. It had been a long time since I had read it, but I will put this on my list of things to read more frequently.

Our dinner and time at home afterwards were good as usual. With all the changes that are going on, I still find that afternoons and evenings are the most predictably good times for us. That’s a nice way to finish the day.

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Morning Confusion and Fright, But a Pleasant End of the Day

Kate was sleeping soundly when I woke her about 10:45 yesterday. She got up without a problem. I thought everything was fine. It wasn’t until I helped her out of bed that she showed any signs of fright and confusion. It was a time when she didn’t have any idea of who I was but gladly responded to my assistance in every way. I told her I was her husband, and she said, “No.” I said, “How about good friends?” She said, “That’s better. She depended on me to tell her what to do and how to do it. For example, washing hands and brushing teeth were like she had never done either before. I was very careful not to rush her. I knew she had plenty of time to be ready for the sitter. That may have helped. I know she didn’t get irritated with me at all.

After she was dressed, she was disoriented. I took her through the hallway outside the bedroom to see photos of her mother and grandmother. She often guesses the photo of her mother is of her. This time she had no idea. She also expressed less interest in the photos than the past. Then we went directly to the kitchen for her morning meds. That went smoothly. When she had taken the last one, we had a few minutes before the sitter was to arrive. I told her she would be going to lunch with Cindy, and I was going to Rotary. I don’t remember her exact words, but she sternly said something like, “You are not.” I asked her to come with me and took her to the family room. I showed her The “Big Sister” album. She didn’t recognize herself or her brother in the cover photo.

We sat down on the sofa, and I opened the album and showed her the pictures on the first few pages while giving her a commentary on them. Her interest grew. A few minutes later when Cindy arrived, she was happy. Cindy sat on the other side of Kate, and I went to the kitchen to get my things. I walked back to the room to say goodbye and noticed that they were looking at a picture of Kate’s parents. I made a comment about them, and Kate said, “How did you know?” I told her that I knew her parents. She turned to Cindy and said, “I don’t even know who he is.” I said goodbye while the two of them continued looking at the photos. She didn’t show any concern that I was leaving. I felt good that she was comfortable with Cindy.

When I returned home, Kate was, as usual, lying down on the sofa but not asleep. She didn’t express any enthusiasm about my being home, but she wanted me to help her up. I discovered a few minutes later than she was ready to leave. She wanted to go home. I took her to Panera and got her something to drink. She worked on her iPad, and I did the same on mine. She got along pretty well on her puzzles without much help from me. An hour later, I suggested that we eat dinner there instead of going for our usual Mexican meal. When we finished, I took her back home. She didn’t say anything more about going home. This routine of leaving the house for “home” has worked each time I have tried it. That makes it an easy to address this problem. It is certainly better than telling her she is already at home.

Kate worked on her iPad for almost an hour after our return, but she had great difficulty with her puzzles. I was seated in a chair across the room from her watching the evening news. Every few minutes I had to get up to help her. She tired of this before I did and asked if she could get ready for bed. I turned on YouTube with a series of Andre Rieu videos that she enjoyed for an hour and a half. Then I put on some especially relaxing music on our audio system. When I got in bed, she was still awake but very relaxed and happy. That was two hours after she had gotten to bed. That is rather commonplace now. It may be that she isn’t really that sleepy. She just needs to rest her brain for a while. The music relaxes her. She doesn’t have to hurry to get somewhere. And she doesn’t have to experience any of the normal frustrating or intimidating situations she does at other times of the day. Living with Alzheimer’s is an emotional ride.