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More Signs of Change

Following yesterday’s eclipse, Kate and I went to Barnes & Noble. This was unusual in that she worked steadily on her iPad for more than 2 hours before leaving for dinner. Just before 6:00, I asked if she would like to go to dinner. She said, “In a few minutes.” I waited another 15 minutes. She still wasn’t ready. Finally, at nearly 6:30, I told her I thought it was time for us to go. That is very unusual. It is rare that she wants to stay in one place that long.

We went to a nearby restaurant for dinner. As we got out of the car, Kate said she wanted to find the restroom. We met the hostess at the front who told us the table at which she would seat us. Then I walked Kate to the restroom since it was not easily spotted from the entrance or where we were to be seated. When I showed her the door to the restroom, I started to turn around. I was going to wait at out table and keep my eyes out for her when she exited. She very quickly asked me to stay right there. That is the first time she has ever done that. That is another indication of her own realization that she can have a hard time finding me.

When we got home, she wanted to pull leaves. As she has been doing lately, she asked if she could. Then she asked where she could work. Later I called her to come inside as it was getting dark. After she was inside, she asked, “Are we going to stay here tonight?” When I said yes, she said, “That’s what I thought.” It’s been a while since she has done this, but it has occurred periodically over the past couple of years.

In a few minutes, she called to me. She was in the middle bathroom. She showed me the clippers in her hand and then put them under the towels in the closet by the sink and asked if that were all right. I hesitated. Then I told her I might forget where they are and to give them to me so that I could put them in the laundry room or in the garage where we usually kept them. She accepted my suggestion and gave them to me. She has been especially cooperative today.

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Strange Behavior

Kate came in from outside a few minutes ago. She stopped about 12-15 feet in front of me with a puzzled look on her face and said, “Something’s going on.” Then she didn’t say anything. I stood up from the sofa and walked over to her. I tried to get her to explain. She struggled to find words. I asked if it involved somebody else. She didn’t answer. I asked if it involved her. (Something she said made me think that she was worried about herself or something about herself.) She said yes. I asked if she was afraid. She said yes. Then she said that maybe she just imagined it. I couldn’t get anything more. She was quite hot from having been outside. I asked if she wanted to cool off. She said she did and wanted to go get something to eat. We had just eaten about an hour earlier; so I knew she probably was not hungry. I also know from past experience that she sometimes says she wants something to eat or drink and then promptly forgets it. It did turn out, however, that she wanted to get out of the house.

On several afternoons when she has wanted to “get out of the house,” I have mentioned going to Barnes & Noble. In each instance, she has said no and reacted as though it had been a silly suggestion. That has led me to take her back to Panera. It is often hot in the afternoon there; so I was looking for another place. Figuring that she simply didn’t remember that B&N has a cafe and tables where we could camp out the way we do at Panera, I brought her to B&N without telling her where I was going. She never raised a question even upon arrival. We just got out of the car and walked in with our cups and iPads and my laptop. I picked out a table, and she sat down. I got each of us an iced tea. We have been here over an hour, and she hasn’t gotten up from her seat. She is still working puzzles on the iPad. I will come back again. It gives us a good alternative to Panera.

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More Signs of Decline

It’s too early to be sure, but it appears to me that Kate is going through one of those sharp declines I have heard other people talk about. I just hope this does not signal something more drastic than what I have observed this week.

Tonight we had dinner at Naples, a local Italian at which we eat once a week. I order chicken Parmesan for Kate one week and lasagna the next. Tonight it was the Parmesan. Right after we got in the car, she said, “They make a good pizza.” We’ve only ordered a pizza there one other time, and that was the first or second time we ate there about two years ago.

Before coming back to our bedroom this evening, Kate called from the kitchen. She wanted to know how to turn off the kitchen light over the island. This is the primary switch we use all the time. When I showed her the switch, she said, “I thought it was there; just didn’t know which switch.” In fairness, there are at least 6 switches, but this is the first time I have ever known of her confusion.

As usual, I feel sad for her and anxious for myself. I know that she doesn’t show any signs of frustration, but I still feel sad to see her losing so much of her ability to do everyday things. I feel anxiety thinking about how I will adjust to the future. I know I will adapt, but I fear the future right now.

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Symptoms of a Decline

Since my post the other day about the possibility of Kate’s experiencing a sharper decline than I have observed in the past, I have thought a little more about what it is that makes me feel that way. I obviously felt strong enough to start filling out a claim form for long-term care insurance, to call the insurance company for some answers, to contact an in-home agency, and sign a contract for services beginning in September.

My answer is this. It isn’t a single behavior that makes me feel this way. It is a combination of little ones. I do believe the pruning of our neighbor’s shrub was an important sign, but it is also expressed in more signs of confusion than usual. She has been acknowledging that she can’t remember things. She seems a little more childlike. She is regularly accepting my offer to get her night clothes for her. It is also the increasing problem with salivation and lack of concern for her appearance. I also noticed two other things yesterday. She spit on the carpet at Panera. When we came home, it was raining. She had several used paper napkins in her hand. She just threw them on the drive back of the garage.

I hope, of course, that I am wrong about getting a signal that she is on a steeper decline, but these signs make me thing she is.

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Difficulty Understanding

Kate and I are at Panera where we came after seeing the movie, Dunkirk. On the way here, she had expressed an interest in knowing more about the real events on which the movie was based. That led me to Google. As I was reporting what I had learned, she held her hand up and very nicely told me to stop, that her brain couldn’t absorb any more. She said she was interested in knowing more, but it was too difficult for her to grasp so much at one time.
I told her that a recent Time magazine that we have at home has a feature on the events surrounding this evacuation. That made her happy, but I would be very surprised if she actually reads it. I can’t recall the last time I saw her reading anything. I do see her pick up something like a bulletin at church and look at it as though she is going to read it, but she puts it down rather quickly.

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Deja Vu

I haven’t mentioned anything about Kate’s deja vu experiences in quite a while, but that does not mean they have gone away. I continue to see the same pattern as always. She will see people in a restaurant, on the street, or just about any other place and say something like, “There he goes again” or “See that woman (couple, family). She’s always there.” She also remembers places we’ve never been before. For example, two weeks ago we stayed in a Courtyard in Buffalo on the way to Chautauqua. She said she remembered some of the surrounding buildings and the room we stayed in although this was our first time there. Two days ago we visited someone we have known here at Panera. He and his wife moved into an assisted living facility while we were in Chautauqua. As we walked down the hall to their apartment, she said she remembered the hallway and the pictures on the wall. On the way back from Nashville a few weeks ago, a couple on a motorcycle passed us. She said she remembered them.

Frequently, Kate does things that I think are both cute and at the same time cause me to feel a little sad. For example, in the past few months she has occasionally taken the cable out of the plug that goes in the wall to take with her to Panera. It is unusual in that she doesn’t often do that much planning. Apart from that, of course, is that the cable will do no good without the plug.

More typically, she just comes into the kitchen and announces that she is ready. I know what she means. She is ready to go to Panera. I don’t really know exactly what motivates her to get ready for Panera. At first, I assumed that she thought we had talked about going there. Now I am beginning to think it relates to the fact that we go back and forth from home to Panera and back again so often. A related factor is that this often occurs right after she has come in from the yard, showered, and dressed. It seems a little like a stimulus/response pattern that has developed. This happened just before we came here about thirty minutes ago. It always occurs when I have gotten into something; so I stop and pack up our things to take to Panera. That is really no problem; it just means that I am regularly shifting gears after getting settled.

The sad part is knowing that her behavior is a direct result of Alzheimer’s, and that it just gets worse all the time. Even as I say this, I feel the need to add that she is usually in a good humor as she is right now. She is happily working on her iPad. Strangely enough, she hasn’t had a problem losing the puzzle because she hit the wrong button. That has been an issue for a while now.

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Signs/Symptoms of Alzheimer’s

We arrived at Panera about twenty minutes ago. As I was waiting in line to pay for two drinks, Kate went to the drink dispenser to get a Dr. Pepper in the cup she had brought with her. She sat down at the table where I had put my cup and her iPad Before I had time to order, she went back to the dispenser with her cup. In a couple of minutes, she returned to our section but didn’t know where to go. I pointed to the table where she had been and where our things were. Then I noticed she was not only carrying her cup, she had picked up another cup with a top on it, and it was half full. Then she took off the top and poured the contents into her cup. Spontaneously, I asked where the got the cup, “from another table?” She said, “Of course, not.” I didn’t say any more. I knew that she couldn’t tell me, but the only way she could get a cup was to get one from the person at the counter where I was waiting. All I can think of is that she picked up someone else’s drink.

Shortly after I got to the table, she looked at me and said with a happy face, “Are we really going to Chautauqua?” I told her we weren’t but that we had just been there and had a great time. I also said, “It would be nice to go back, wouldn’t it?” She agreed.

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More Signs of Decline

I am seeing little signs of just how far along Kate is. This morning after her shower, she came into the living room of our apartment and said, “I’m ready.” I asked what she was ready for. She said, “To go home.” I got up, put my arms around at her and told her this was our first day at Chautauqua and that we had a week to go.

She had said something like this yesterday, and I told her we were here. I know that last night and tonight at dinner, she asked, “Where are we now?” Last night, I asked her what she meant, in this place (meaning the restaurant, or . . .” She stopped me. I told her we were at Chautauqua. She said, “I know that.” I believe she really didn’t know that.

Tonight she asked the identical question. I told her Chautauqua. She smiled and said, “We are?”

I don’t know that I said this earlier, but when I found her this afternoon, she was quite calm and seemed to have enjoyed being with the man she was talking with.

She enjoyed the morning lecture and got along fine at the 2:00 lecture even though we were in an overflow room where there was only audio.

All-in-all she has had moments of pleasure and others where she seems tired and unenthusiastic about being here. The latter reaction reinforces my thought that this will be our last year.

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Sundowners?

I have mentioned signs of possible sun downing in prior posts, but I don’t believe I have said anything in a while. Tonight Kate came in from outside without my calling her in. I suspect that was related to the heat. She has not been staying out very long lately.

Once inside, she said or did several things that in combination are somewhat unusual. First, she came into the bedroom where I was watching the news and asked, “What now?” I told her it was after 8:00 and that I was going to take my shower. She said she needed to take as shower as well. I told her she could go first. She had the clippers in her hand and walked toward the end table on her side of the bed and asked if she should put them in there. I told her I thought it would be better for her to put them in the laundry room where she would find them when she went outside.

She left the bedroom and came back in a few minutes. She stood by the bed, looked at me, and asked, “Are we sleeping here tonight?” I told her we were. She asked me what she could do. I told her it would be a good time for her to get her shower. She left to do that.

When she came back to the bedroom, she had taken her shower and put on a robe without a night gown. This is something she does fairly frequently when she can’t seem to find a night gown. I asked if she would like me to get her.a gown. She said she would, something that is a fairly typical response. That seems surprising since she continues to be as independent as possible. Maybe she is just tired at the end of the day.

She started picking up a few things on her side of the room. One of the things was a bra hat she picked up and threw to me. I must have looked surprised. She said, “Well, you said you would know where to put it.” Of course, this was one of those occasions when she thinks I have said something when we haven’t had any such discussion at all.

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Email to Jesse and Kevin

Dear Jesse and Kevin,

I am so glad we were all able to be together for Brian’s graduation. I appreciate the efforts of each of you to make this a special occasion. A year ago, I would not have expected that Mom and I would have been able to make it. I am grateful that I was wrong.

That said, I am sure that both of you could see that life is different for her now. The change is even more dramatic than at the time Kevin and Taylor were here in March. We are now entering the first chapter of what is the portion of this journey that most of us think of when we hear the word Alzheimer’s. Up until now, we have been able to lead what appears to outsiders as a normal lifestyle. (It has been far from normal for us.) We have been very active and have enjoyed ourselves. Mom is now deriving less and less pleasure from things that in the past have provided her a great deal of pleasure and satisfaction. As you know, this doesn’t get better.

Our travel over the past ten days has been hard on her. It has led to her being very tired and confused. I have heard others talk about the challenges of travel, but up until now, those issues have been mostly the burden on me. The burden is now shifting to her without any relief on me. Kevin, I really hated to leave the swim meet the other night, but I was really feeling for Mom. She is very sensitive to the heat. More importantly, she does not know what is going on around her. Not that it would have made any difference but, she wasn’t able to see any of the races themselves. I felt bad that I hadn’t brought her iPad to the meet. She would have been able to entertain herself in that way. Neither did I have it for her at the graduation. Speaking of which, as we left the graduation the other day, Mom said, “Tell me again why we were here for this thing.” She hadn’t realized at all that she had been to Brian’s graduation. I am equally sure that she didn’t even know that it was a graduation.

While we were there, she never completely realized that she was in Lubbock. As we approached our landing on Saturday, I said we’re coming in 25 minutes early. She asked me where we were coming into. When we landed in Knoxville last night, I said, “Well we’re here.” She said, “Where?” I told her Knoxville. She said, “Where we just left?” I told her that was Atlanta.

On the way home, we went to Chalupas for dinner. After we got home, she worked outside for about 30 minutes. This morning that was the first thing she wanted to do. Usually we go to Panera first. She was outside about an hour after which she came in and showered. Then we went to Panera and to lunch. Since our return from lunch, she has been outside. This is one thing that she will be able to continue doing for a while longer. I am thankful for that. She is having more trouble with the iPad. She keeps hitting buttons that take her out of her puzzle, mostly for offers to buy other puzzles. Then she doesn’t know what to do to get back. Though I encourage her to ask me to help her get back to her puzzles, she thinks she is bothering me. When she can no longer use her iPad, she will have lost half of what entertains her now. I hate for that day to come.

Looking ahead, I am still planning to make our trip to Chautauqua in July. That is four weeks from tomorrow. While I don’t think this year’s stay will be like those in the past, I think she will feel comfortable being on the grounds. I think I told you that we bought a bench for the amphitheater that is being reconstructed for this year’s session. Unfortunately, it looks like the benches won’t be ready. That was one of my primary motivations for going this year so that Mom could see where our bench is located. Of course, I need to keep in mind that at this point, things like this don’t mean anything to her. It’s really for me.

The next planned trip is to attend the TCU homecoming in October. I am not at all sure that will happen. It all depends on how Mom is doing. At this point, I don’t think we will make it. If that trip is not possible, that means that the trip to Lubbock for Christmas will be out as well.

As I close, I want to reiterate what you have heard me say so often before, Mom and I have been very fortunate that her decline has been so slow and without any special complications. I continue to treasure not only the memories of our whole marriage but also those since her diagnosis January 21, 2011. One of the few things she said about our trip was how proud she was of both of you and your families. To me, that alone was worth the trip. I know that even now she doesn’t remember the details of the trip or, possibly, that we even took the trip, but the feeling she has for the two of you remains. That’s another thing for which I am grateful.

Love,

Dad