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Sad Moment

Yesterday morning shortly after I told Kate it was time to get ready for church, she came to me with an outfit and asked, “Is this all right?” This seems a simple enough question, but viewed in context, it is another sign of her decline. She has been and continues to want to be very independent. She often shows signs of resentment when I make suggestions about what she should wear. She does, periodically, ask my opinion. In this particular instance there was something about the way she asked the question that hit me. It sounded very childlike as though she had no idea of what to wear. I think the fact that she was preparing to dress for church which is such a routine event adds to my sense that she is changing.

As a caregiver, I have to be very sensitive about what to say, when to intervene, when to let her make her own decisions even when I know it may be different from what I believe is appropriate. I am trying very hard to minimize her boredom now. I am spending less time at the office so that I can be with her more. That permits such things as simply coming over to Panera Bread where we are right now. Here is an example.

Today I have a foundation lunch meeting that starts at 11:30. That means I need to get her lunch somewhat earlier than I would do typically when my Rotary club meets at 12:30. For that reason I decided to come home directly from my workout at the Y and take her to Panera where we could both work on our iPads and then get her lunch. Knowing that she often goes outside to work in the yard and that if she did this, we wouldn’t have much time together before I have to leave, I called from the Y to remind her that we were going to Panera. She had forgotten. When I got home, she was waiting in the driveway near the street. When she got in the car, she said, “I didn’t keep you waiting.” This led to a few comments related to her saying that I didn’t give her credit for anything. She then gave me commands as to how to get to Panera’s. She was mimicking the way I do with her. My point in telling the story is that I had simply tried to do something nice for her, but she hadn’t recognized that and, in fact, seemed a little put out with me.

During our time here, she said, “The Olive Tree. That is the name of the restaurant where we ate on Saturday with the Harringtons. She had asked me several times but couldn’t remember the name. Then she said, “Katherine.” That is Mark’s wife. That led to her repeating our address, my cell phone number, as well as the names of several high school friends. She was demonstrating that she still remembers things. This is another sign of her own recognition that she is getting more forgetful and is working hard to compensate (remember). That makes me sad too.

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Signs of Frustration. Mine not Hers.

First a little background. As long as 10 years ago, a neighbor down the street sent a message to everyone on our street asking us not to put our yard trash on the street until near the time of our weekly pick up on Thursday. Kate was initially offended by it but has tried to abide by the neighbor’s plea. In the past couple of years she has been especially rigid about it, not wanting to put the trash out until Thursday morning. I have never cared for this because it meant that we (either Kate or I) had to be the ones to get it out because the woman who cuts the grass and cleans up the flower beds wouldn’t be here early enough on Thursday and often comes on Tuesday or Wednesday, sometimes Friday. She came on Thursday morning this time after the trash men had already picked up. The leaves are beginning to fall, and the trash piled on the street was at least 12 feet long.

This is not a good week for this to occur because today is Halloween. We have a lot of trick-or-treaters. Kate wanted all the trash moved. I originally suggested that we leave it, but she was insistent. It is also something she didn’t forget. I never volunteered to move it, but she got the impression that I had said I would. After lunch today, she said she would meet me outside which I took to mean that we would work together to move the trash to the back of the house. When we got out there, she began raking up some trash that was in the yard. I started to load up the trash in an old garbage cart that I could roll to the back of the house. It turned out that she wanted me to put it in the flower bed on the side of the house. This is one of the areas that I have had our yard person cleaning up. To be more specific some of this trash has come out of the flower beds, and I didn’t like the idea of putting it back just after she had removed it two days ago. She said she would step aside, and I could put it wherever I wanted which I did.

She started picking leaves off the shrubs she does almost daily. As I was taking one load of trash to the back of the house I noticed that she had left some trash from the front flower bed on the sidewalk, a place she usually put trash. I suggested she could clean that up while I was moving the trash from the street. She seemed quite willing to do it. I saw her with a broom, and she was sweeping the front porch. It had looked pretty clean to me, but I thought she just wanted to start there and then move along the walkway to the driveway. Later I walked by and saw the trash was still on the walkway. It turns out that she had finished her work and gone in to take shower. I ended up cleaning up that trash too. At the time I felt like saying something to her but decided against it. I know that she didn’t realize what she had done (or not done). I simply didnt think there was anything to gain by saying something other than the personal satisfaction of telling her.

I relay this story to make sure that the reader knows that I do experience some frustration even when I accept what she has done or not done. It is also another example of how this disease can change normal interaction. There are many things like this that occur, but I try not to say anything at all.

Something else that bothered me. I changed clothes before going out to clean up the trash. She is not sensitive to this at all. She was dressed very nicely when we went to lunch. I commented on how nice she looked. She wore a beautiful garnet turtleneck sweater and a nice pair of black slacks. When she went to clean up, she wore those same clothes. At one point I saw her sitting on the edge of a flower bed where she was pulling weeds or something like that. She has so few clothes that are not soiled in any way that I hate to see her messing up the ones that are in good shape.

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More On Coordination

This afternoon we had planned to go to a movie at 4:30. After lunch, we came back home. I came inside, and Kate started to do some things in the yard. Very shortly, she came inside. It was too hot. We called Jesse who had called us last night while we were attending an event honoring one of my major clients. We talked about an hour. At 3:00, I told her we had an hour before we would leave for the movie. At 3:45 she walked into the kitchen dressed for yard work. I told her we would leave in about 20 minutes. She asked me to give her 5 minutes in the yard. I did just that, and she came in. At 3:05 I checked to see how she was coming along because it was time to leave. She was in her bathroom getting reading but not dressed. I told her it was time to leave. She asked me to leave her alone. I followed her instructions as I have learned to do. When she hadn’t come out at 4:25, I went back to check again. She was in bed working jigsaw puzzles on her iPad. It was obvious to me that she had forgotten we were going to the movie. I said, “Why don’t we go to dinner in a while and forget the movie.” Then she started to get up to get dressed. I told her the movie was getting ready to start. She felt badly. I made the mistake and said, “I hate for you to suffer.” She immediately and sternly asked me “never to use that word with her again.” I will remember that. She doesn’t want to be treated as a patient.

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What About Future Travel?

So what do I think about this trip and future travel?

I believe this trip was the right thing to do. We have seen and done new and interesting things. As I write, I am sitting on a lounge on a terrace overlooking Lake Lucerne. Kate is either experiencing allergy problems, or she is coming down with a cold. We had a filling lunch and ate ice cream late this afternoon. She didn’t feel like eating at all.

While the trip has gone well, I must admit that it just isn’t the same as it has been before. This relates directly to Kate’s AD, not to any aspect of the trip itself.

The fact that we are traveling does, however, make things more complicated than being at home. There are so many different things for me to be think about. On top of that is tending to Kate. While I haven’t lost her at any time, there have been brief moments in which I didn’t see her or she didn’t see me. The very thought that I might lose her has added a little stress.

In addition, the fact that she can’t understand so much of what is going on around her has meant (here and at home) that we can’t have the same kind of conversations we used to have.

Thinking ahead, I concluded early in our trip that we definitely will not do a trip of this nature again. It is simply too difficult for me to manage.

We have the NYC trip coming up in June. The fact that we will have our daughter, Jesse, and our son, Ken, along to manage the grandchildren will make this doable and enjoyable.

I suspect the trip to Chautauqua will be different this year. It might even be our last.

When I think of these things I immediately feel a sadness. Obviously for Kate but also for me. It is not only that she will never experience things in the same way again but neither will I. That may be one reason that I am lingering out here overlooking Lake Lucerne and the surrounding mountains. I really love these experiences, but they are best shared with someone you love.

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Kate’s Birthday

At the moment we are both sitting in front of the fireplace on a cold, overcast day. It is a bit dreary but we have no rain. Kate  is having a good birthday. She got a call from Sharon, her cousin in Dallas. Ellen hosted a surprise birthday lunch at one of her favorite lunch places. She was totally surprised. I hadn’t mentioned anything about the lunch, and she never asked. One of the things I have noticed is that Alzheimer’s  has led to her not thinking about such things. It is easy to surprise her. She doesn’t read any clues that something is up. In this case, the only thing I said was thirty minutes before leaving. I told her we were going to meet Ellen for lunch.  She didn’t ask or say anything. She just went along the same way she would have on a typical day.

She has heard from a number of her Facebook friends. Several of those were responding to a video I had posted on my Facebook page as well as hers. I had selected pictures of her at different ages and places from 1941 to 2014. This was a short video (about 13 photos), but it gave a nice portrait of our lives together, especially places we have traveled.

This leads me to point out something else that is indicative of her Alzheimer’s. She hasn’t thanked me, hasn’t asked how I made the video, or even how I found two of the pictures which I had gotten out of an album her father had made before she was five or six. In the old days, she would have acted very differently.

The big hit was the luncheon. She was taken by surprise and mentioned it several times after we got home. I am so glad Ellen did this.

Tonight we go our for dinner. Since we eat out every night anyway, that will seem like an ordinary dinner.

I am trying to imagine what she will be like next year at this time. It hurts to think about it.

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A Couple of Little Things

Ellen came by this morning to pick up her Christmas pottery and her poinsettias that she had loaned Kate for her PEO meeting on Thursday. She mentioned to Kate in my presence that after Christmas she gets into a clean-up mode and would be willing to help Kate sort through her clothes to determine what she needs to get rid of and what she wants in her closet. After Ellen left, I asked Kate about Ellen’s help. She told me that she didn’t want her to help, that she didn’t need it; she is already taking care of it and has been giving clothes to our housekeeper. She told me that she has been doing a little bit at a time and didn’t need any help. This is obviously not true, but she doesn’t realize she is not making progress.

This morning she asked me which light switch in the family room controlled the outlet she likes to use when she is charging her computer. After I told her, she said, “”How did you know that? You remember everything.” She is often amazed by what other people can remember or do.”

While we were at lunch, she asked me what my mother died of. I said, “Alzheimer’s.” I went on to say that many people with Alzheimer’s often die of something else, but that Mom really died from Alzheimer itself. She said, “You know I don’t remember much about that at all.” I told her there was a good reason for that; she was taking care of her mother, and she didn’t have the kind of daily contact with Mom that she did with her mother.

Following lunch we went to Belk to get Kate some gloves and hose. When we walked into the store, she said, “”I also want to look at some slacks.” I mentioned that we had just bought a lot of slacks. She asked me to stop talking. We did look for slacks. When I noticed that she was looking at black slacks, I reminded her that we had bought 2 pair of black slacks last Saturday. She then looked for others but didn’t find anything. She told me she would just get the gloves and hose and look at home to see exactly what she needs.

On the way home, she asked me a question (I don’t remember what it was.) When I told her, she said, “I know. I have asked you that five times.” I said, “”That’s all right. You can ask me as many times as you want. I’ll remember for you.”She said, “”You are so patient with me.”

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Appreciation

In the recent past I have noted that Kate is more irritable than in the past. More specifically, I noted that she gets peeved with me. Now I would like to report that she is going through a phase in which she is expressing an unusual degree of appreciation for what I do for her. She frequently says, “”Marrying you is the best thing I ever did.” Every time I help her with something, she seems quite appreciative and is more expressive of her need for me than before. The things I do don’t have to be of much significance. For example, last night she picked up her iPad before getting into bed. She discovered the battery was exhausted. I said, “”Give it to me, I’ll charge it for you.” She said something like, “”Oh, that would be wonderful. I can never figure out which thing to use.” She handed the iPad to me. I plugged it in, and she picked it up and started using it. Then she said something else. I don’t recall exactly what it was, but it was an expression of appreciation.

This makes me wonder if she is experiencing more problems doing everyday things and suffering more frustration. Nothing other than her appreciation indicates that is the case. I also am beginning to wonder if she is entering a stage in which she doesn’t cognitively process things in a way that leads to her being depressed, but she clearly still feels frustration.

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Not Learning Enough Patience

It is now fall. That means another time for planting. We have been to Lowe’‘s a couple of times already. Friday Kate mentioned that she wanted me to take her back to get some more mums. Today after lunch I did just that. When we got to Lowe’s I noticed that she walked right by the table with the largest selection of mums that is right outside their main section. I got a cart and took it to her. I found her looking at a small section of mums like the ones she had purchased before. She didn’t get any. She walked around without appearing to have a plan. I am confident that she didn’t. Then she picked out a couple of plants that were not mums and continued looking at other plants that were clearly not mums. I suspect she had forgotten that she wanted to get mums; so I reminded her that she had wanted mums, and I wanted to make sure she didn’t get a full load before getting what she said she came for. She seemed to accept this, but before we could get back to the mums section, she picked out several other plants. If I hadn’t reminded her again, we might easily have purchased a full load and not gotten what we came for.

This, of course, is looking at it from my perspective. The reality (I believe) is that she doesn’t have a formal plan anyway. She just likes to buy things that she likes when she sees them. She can always find a place for them. She can tell when I get frustrated which must bother her, and it bothers me. I need to develop more patience to just let her do what she enjoys without trying to get her to approach things the way I would do.

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A New Observation

For a long time I have made a point of saying that the person with Alzheimer’s does in fact know they have the disease, and it frustrates them. In the past 2-3 months I have come to another observation. The Alzheimer’s patient is like all of us in that he or she does not recognize the basis of all behaviors. In Kate’s case, she is most frustrated by the difficulty she has performing tasks like working with the computer or remembering where she puts things. On the other hand, I don’t believe she has any recognition of the lack of care of thought with which she does things. I think it was those things that were the first signs something was wrong, not a problem with memory. Just yesterday she had an experience that may illustrate this lack of recognition.

She has lost several pair of clippers that she used to trim her shrubs. I know I have bought at least 3 or 4 since spring not including 2 I bought this past week. Day before yesterday she told me she had lost one of the 2 new ones. Yesterday she asked me to walk around the yard and help her look for them which I did. Neither of us found them. When she came inside, she said something like, “I just don’t know how I do this?” The way she said it, I was unsure whether this was simply an expression of frustration or if she really doesn’t know the cause of her behavior. I am well aware that she doesn’t recognize how far along she is, but I have assumed that she grasps the fact that her Alzheimer’s is what causes all the problems like this one. I believe I was wrong about that.

On an unrelated note, she came inside for some water about 45 minutes ago. When she saw me, she said, “I didn’t know you were here.” That made me stop and think about it. This is a Saturday morning, and I have been inside working on my SS lesson for tomorrow. She doesn’t usually know what day it is; so she was thinking it is just like every day. She works in the yard while I am at the office (though nowadays that normally occurs on MWF, not the other 4 days of the week). She was probably thinking I was coming home from the office. Then walked in the house only to see that I was here. Before going back outside, she asked me how long I had been at home. That gave me a jolt because I assumed she had grasped that I had been home all along. I thought a moment and said, “”Well, since I came home from getting my haircut yesterday afternoon.” She looked at me and said, “”That wasn’t funny.” I apologized, and she said, “”Well, it was a little funny.” I could not help wondering if she did not think it funny because I was making light of the fact that she can’t help getting mixed up on such things.

Two days ago, she asked me where the church directory was. I told her the last time I had seen it she had taken it out of the drawer in the kitchen where we kept it. She said, “”That’s scary.” This was said matter-of-factly. She wasn’t making a big deal of it but it seems to me interpreting the situation as one in which her Alzheimer’s could mean the directory could be anyplace. Indeed, I have looked around the house without success. It really could be anyplace.

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“Don’t count me out yet.”

Last night as we were driving to dinner, Kate said she had counted 8 people walking along the street. This is a habit she has gotten into the past year or so. She started do this after noticing that she sees more people walking along this street than she does other streets. She then told me that she had counted the walkers while listening to me. I joked about her being a multitasker. She then looked at me and said, “”Don’t count me out yet.” This is not the first time she has said this though it is not something she says all the time. I have heard her say this as many as 5 times (an estimate). This is another example of our light-hearted way of recognizing her situation but not dwelling on it or approaching it with sadness.