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A Very Nice Sunday

From start to finish, Kate and I had a nice day today. I was up just before 6:00, had breakfast, took a 2.5-mile walk, and returned home before she was up. I checked email and worked on preparing this journal to post online by the end of January. Kate slept a little later; so we didn’t get to Panera until almost 10:00. That had been a typical time for us until the past couple of weeks before Thanksgiving. I think she is still recovering from the trip to Memphis.

One of the things that may have accounted for such a nice day was our schedule. It was broken into small chunks of activity. We spent about an hour and a half at Panera and then went straight to lunch. We arrived back at the house just before 1:00. As she usually does, Kate asked if she could work outside for a while. I told her I would be glad for her to do so. She expressed surprise once again. Then she asked if she could use her clippers. That’s when I reminded her that we couldn’t find them yesterday afternoon. I bought 3 new clippers two weeks ago. They have all “disappeared” now. I came inside to catch portions of two different football games. She worked almost two hours before coming in.

When she came inside, she said she was going to take a shower and then pointed to the bathroom off the guest room, the one she usually uses. A few minutes later she appeared wearing a different top and was all ready to go someplace.I asked if she would like to go to Barnes & Noble. She said, “Anyplace.” Off we went. About 4:30, I suggested we go home. That would give us about an hour before going to dinner. She accepted that.

She worked outside for almost an hour before coming in. By then it was time for dinner. We went out and returned home by 6:45. I suggested that I make a fire and that we both relax for a while. We did. Brian called about thirty minutes later. We had a nice conversation with him. When we hung up it was about time for us to call it an evening. I took my shower. She got ready for bed and worked on her iPad for another hour. Then retired for the evening.

I am now catching a little bit of the Packers/Steelers game. It has been a good day. We didn’t do anything elaborate, but we enjoyed the day and being together.

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Looking For My Guidance

Kate’s asking what to do or when to do is not a new thing, but it almost always catches me by surprise. In this respect, I am almost like someone who is unfamiliar with her habits. This afternoon before I left her with Mary, the sitter, she presented me with one of those times. As usual, I had not mentioned that the sitter would be coming and I would be going to the Y. I’m not quite sure why I don’t. It may involve several factors. One is that I know she won’t remember even if I tell her. Another is a slight fear that she might not react in the positive way she has done thus far. The latter is not a serious concern since she has reacted so well on every previous occurrence. Maybe I will get over this soon.

When Mary arrived, Kate was in our bedroom working on her iPad. Mary went back to say hello and to let her know that she was here. Then she came back into the family room and took a seat. I went back to say goodbye to Kate. When I approached her, she motioned me to come over to her. When I did, she started to whisper something. I thought she might be about to ask her name. She surprised me when she asked what I wanted her to do. I told her she could continue working on her iPad or she could work outside or they could go to Panera. She acted surprised that she was free to do these things. I have had this impression a few times before. It is as if having a sitter restricts what she can do. I have tried to be very clear that I want her to do the things she wants to do while I am gone. The thought also strikes me that it may not be the sitter that is the cause of this sense of a restriction on her activities. I have mentioned that when we return from home during the day, whether it is from Panera in the morning or from lunch in the afternoon, she frequently asks if she can work outside, where she can work outside (the front, the back, or all around), and if she can use her clippers. I have never restricted her with respect to any of these things, but she always reacts with surprise when I say “yes” to each of her questions. Thus, it may be that she still sees me as setting boundaries for her even when the sitter is here. While I hate for her to feel that I control her in this way, I must admit that also makes compliance work well, something that is increasingly evident when I do want or need her to do something like coming inside to get ready, to wear clothes that are most appropriate for the occasion, etc.

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One Reason I Say We Have Been Fortunate

As we drove up to our house from Panera, Kate asked if she could use her clippers. I said, “Absolutely.” She gave me the surprised look she always gives when I say this even though I have never said no.  Then she asked if I thought she would need a jacket. I told her not the one she had on but another one I would get for her. (The one she was wearing was a new one I had gotten for her last week. I didn’t want it to get messed up outside.) Then she asked me where she should start, in the front of the house or in the back. I usually say, “You can start wherever you like.” Then she will make a suggestion, and I say, “That would be fine.” I get a kick out of this question because she almost always asks it, but she never remembers what she has decided and simply starts wherever she feels like it when she goes out.

She came inside for a few minutes and then walked in the kitchen to go outside. I helped her with her coat. She asked where the clippers were. I told her they were on the top shelf of a shelving unit in the garage. She said, “I’m going to change my shoes” as if asking my permission. I told her that would be a good idea. (She has two pair of gardening shoes that, surprisingly, she has had for years without losing them.) As she was putting them on, she asked once again, “Where are my clippers?” She was standing in front of the shelving unit with a variety of gardening tools. I told her “on the top shelf.” She looked and finally saw them. Then she said, “You mean right there in front of me?” I smiled and said, “I didn’t say that.” She gave me a big grin and said, “But you were thinking it.”

During any given day, we have a number of such interactions. I work very hard to reinforce this kind of behavior, but I also believe that, by chance, our personalities just work together well to minimize conflict. I should add that this is more indicative of our relationship now than at earlier stages of her AD. I also believe this is something than could change as the disease progresses. There is much that we can’t control. Once again, I say we have been fortunate. I know that many others have a much more difficult time. I feel for them as I give thanks for our own experience.

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Noticing a Change

Over the past few weeks I have noticed that Kate has been asking me to remind her of the names of people more often than in the past. It is not surprising that this was most evident during our recent trip to North Carolina. I am, however, noticing that she is asking for names with quite a number of people and places. I suspect that the more she does it, the more comfortable she becomes in asking me to fill-in for her memory.

Simultaneously, she appears to be more comfortable in accepting or asking for my help in other ways (clothes to wear, getting ready to go places, etc.) I know that I have mentioned a number of times that she occasionally says something about how much she depends on me. Yesterday at lunch, she said it. Only this time she said it twice, the second time she gave me a very serious look as if to convey, “This is not a routine statement I am making.”

I have always tried to affirm my desired to be here for her. My most typical response has always been, “You can ask me as many times as you want. That is why I am here.” I have othe variations of this sentiment. “I will always be here for you” is one that I have also used. Most recently, I have said, “We are a team. We will do this together.” I don’t think she literally understands fully what I am saying. I know that she takes it as a statement of support for her. For me, that is the most important thing. I want her to know that she can count on me.

 

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Symptoms

It has now been an hour since I went outside to get Kate. About 20 minutes ago, she had gotten out of the shower and was walking into our bedroom in her robe. I had thought that she would be dressed for dinner. I went into the bedroom. She said, “I did what you told me.” I said, “What was that?” She said, “To come in here.” (As you may have guessed, I hadn’t given her any instructions about what she was to do. I only brought her in so that we could get a shower and go to dinner.) She then picked up her iPad and asked (by motions, not words) if she could get in bed and work on it. I said that would be fine and that I would check in a few minutes to see if she was ready to eat. I have now done that, and she went back to her room to dress. My expectation is that she will return dressed and ready to go out. Will I be right?

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Morning Confusion

A little earlier Kate was in the bed working on her iPad. I heard her express some frustration and say something about not being able to get this “thing” working. I asked if I could help. Then I walked over to her. She handed the iPad to me. I saw immediately that she was not in her jigsaw puzzle app but in photos instead. I got her back to her puzzles, and she said, “I can’t live without you.” I said, “You don’t have to; I will always be here for you.” I doubt that she can envision what the future holds, but moments like these are full of meaning for me.

Recently I have been struck by the fact that it seems like she has the most trouble with her iPad during the morning, especially while we are at Panera. At other times of the day, for example at night when you might expect her to be worn out, she is able to work on the iPad for long periods of time without needing my help. I wonder if it is just a morning grogginess that is the basis of the morning confusion.

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More Childlike Behavior

Kate was working on her iPad while Forest Gump was playing on TV. I thought she might get interested, but once again I was wrong. She is simply losing interest in watching things on TV. At 9:00, she said, “That’s it.” She put her iPad down on the bed, but she didn’t take any steps to get ready for bed. After a few minutes, I asked her if she was ready for bed or if she wanted to keep watching the movie. At first, she didn’t answer. Then she asked, “What do you want me to do?” I told her it was 9:00, and that it was about time to prepare for bed. She got up and went to her room. I went into the family room to listen to music before retiring for the evening. About 10 minutes later, I got up to see if she had gone to bed. She was coming into the family room. She was wearing a night gown and carrying a robe. She motioned me to come to her. She held out the robe without saying anything to me. I asked if she wanted me to help her put on her robe. She nodded. I held the robe so that she could put one arm after the other into the sleeves and pulled it up around her. Then I said, “I am glad that I can help you.” She gave me a hug. I told her I loved her. Then I told her I was going to listen to my music a little longer. She then went to bed. This is just one other occasion when she is childlike. I mean by that that she seems to completely look to me for help or guidance as to what she should do without asserting her independence. As always, this is bitter sweet. I know this is moving us another step closer to the future, but she is so sweet when she does things like this.

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Coordination Problems

I have often mentioned some of the coordination problems that arise because Kate doesn’t remember what I have said. Right now we are experiencing one of those occasions. At 6:05, I went outside to tell her the time and that we should be getting ready for dinner, something we typically do between 5:45 and 6:30. She reacted negatively and said she wanted to plant a few other plants we had bought at Lowe’s yesterday. I said OK, but I really felt like it would be best to start getting ready now because she will need to take a shower and then dress. That sometimes takes an hour. I know, however, that she might need only 30-45 minutes. As I get to this sentence, I see that it is 7:11, and she is still outside.

This is one of those occasions that almost any married couple could face almost daily. In a normal situation, however, they could talk about it and negotiate something that would suit each one. I recognize, of course, that it can also end up in a standoff. My view is that such a standoff in our situation is simply unproductive. For example, if we had an appointment to be someplace at a particular time, I would need to push her a little. In tonight’s situation, we don’t have any such obligation. This is the more typical case for us; so I am simply letting her stay as long as it takes (that is, unless it gets close to 8:00). While I take this position, I have to be honest in saying that I am really ready to eat and would like her to see that and do it for me. On the other hand, I know that her brain doesn’t work normally. She would never have been like this before Alzheimer’s. I truly miss being able to have normal conversations about things like this, but those days are gone.

Something similar happens with the temperature in the house or in the car. Most of the time I am comfortable, and she is hot. That means that she wants me to make the house or car cooler. I always comply with her desire, but I do sometimes let her know that I am either comfortable or in some cases cold. She totally disregards this and actually thinks I am crazy. I, naturally, believe that her own body thermostat is not working the way it used to do. I do recognize that she feels hot and try to see that she gets relief, but I would love it if she gave just a little recognition to the fact that I am cold. Alas, there is no way to reason with someone who has Alzheimer’s.

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Another Example of Coordination Problems

I came back from my morning walk at 7:00 and went into our bedroom where Kate was sleeping. I asked her if she wanted to go to our monthly Y pancake breakfast. She said that she did. See was a little groggy and didn’t show a lot of enthusiasm. I told her that she didn’t have to go. I went back in a few minutes and saw that she had gotten up. I came into the kitchen to load some photos onto my computer. I like to leave at 7:45 for the breakfast which starts at 8:00. About 10 minutes later, she called to me and said she didn’t think she would go. I met her in the family room and asked if it was because she didn’t know what to wear? She said yes. I told her I could find something. I got her a pair of black slacks that had just come back from the cleaners along with a pink top. She took them to her bedroom to put on. In the meantime, I went back to the kitchen and my computer. At 7:45, she had not appeared for us to leave. I decided not to rush her. Then at 7:55, I went back to the bedroom and found her in bed working on her iPad. I asked, “Did you decide not to go to the breakfast?” I reminded her that I had gotten clothes for her to wear. She wanted to go; so I went with her to her room where her clothes were on the bed. She got ready quickly, and we went to breakfast where she had a good time. She had just completely forgotten that we were going to the breakfast.

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Yet Another Nice Day

I like making positive reports; so I am going to make an entry right now even though it’s only mid-afternoon. Today was PEO day for Kate. I asked her to get up about an hour and a half before time for us to leave. That turned out to have been a good move. It took about an hour and 45 minutes before we left. Last night I had decided what I thought she should wear. I brought them to her before she got out of bed. She liked what I had chosen; so I left them on the bed for her. I had picked out a beautiful top that we had bought about 3 weeks ago. It is a beautiful 2-piece knit “top.”

When she was ready, she came into the kitchen. She didn’t say anything. She just stood there. She was waiting for me to pass judgment on her attire. I told her she looked beautiful. I was so pleased to see her dressed like that. On the way to the meeting I asked her if she remembered my phone number since she calls me when she is ready for me to pick her up. It was clear that she is having trouble now. In the past, she has always been able to remember my number. These days she doesn’t have much occasion to call me which is why I asked. I do remember that the last time I took her to a PEO meeting that she was unsure of the number. I didn’t have anything to write with or I would have given my phone number to her. I am going to keep a few of my business cards with my cell number in the car. I think I will also start making sure that she has a card with my number on it anytime we are apart.

While she was in her meeting, I went to church for a reception honoring volunteers. I decided to return to get Kate before she called since she had been unsure of my number. It turned out that my timing was perfect. The meeting had not gotten out when I drove up. Within 5 minutes, Kate appeared at the car. I was surprised and said something to her. She said, “”You said to meet you.” I said, “”And you did.” Then I added, “You didn’t have to call.” She said, “I would have if you hadn’t been here.”

From there we went to the Bluefish Grill for lunch. This was our first time there. We had a good lunch and will plan to return. It is diagonally across the street from the movie theater where we go to see Live in HD at The Met performances. We’ll be there this Saturday. It was nice to go to a new place, especially since we had such a good meal. She had blackened catfish with mixed vegetables (broccoli and green beans) that were cooked perfectly. I had curried shrimp that was also quite good.

Our lunch was one of those pleasant times that just happen once in a while. It topped off what has been a great day. Now she is back home and is out in the yard planting some things we bought two days ago at Lowe’s. She’ll be out there until I call her inside in about an hour. Then we will have an early dinner. I am going to the opening of our new baseball stadium tonight. I don’t intend to stay the whole time. I am mostly going to be sociable. I am a guest of our attorney.