Turning a Corner With a Little Trepidation

Earlier I posted emails that followed our visit to the Robinsons last Wednesday. In those I speculated that Kate seemed to have been worn out after the visit. During the afternoon, she closed her eyes and rested in a chair at the Robinsons while we were visiting. After we got home, she went to bed rather quickly and expressed only minimal interest in her new iPad that had arrived in the mail that day.

The next day things everything was pretty normal. For quite some time she has seemed to require more rest than she used to. Then on Saturday after we returned home from seeing a movie and getting ice cream, she got right into bed in her office. That would have been around 3:30. She remained in bed the rest of the afternoon. I had made reservations for dinner at 6:45. She had been fine with that. At 5:30 or so, I checked on her, and she said she didn’t think she wanted to go. We talked a minute, and she decided to go ahead with our plans. A few minutes after 6:00, she was still in bed. I asked if she still wanted to go. She indicated that she did. When she had not made a move to get out of bed by 6:15, she said she thought I should cancel the reservations which I did. Then I went to Panera for a sandwich and salad. Before leaving, I turned on an ETV fund raiser that featured music from the 50s and 60s. When I returned from dinner, she was up and smiling. She quickly told me about the wonderful program on TV. It was the one I had turned on for her before leaving. She was in good spirits from then on.

She got into bed early that night and told me she was waiting for me. I took my shower and then got into bed with her. She seemed especially glad to see me. She always does. She likes to be cuddled before going to sleep. This time, however, I sensed a deeper meaning.

Then yesterday after we had gotten home from Sunday school and lunch, (We did not go to church at her request.) she again went to bed and remained there for the afternoon. I was watching the final round of the PGA championship; so I didn’t rush her. Finally, around 6:30 I asked if she wanted to go out for something to eat. She said she did. When we got home, she again got into bed after changing for the night. Again, she indicated she would be waiting for me. When I got into bed and held her, she said (as she has done a number of other times), “This is the best part of the day.”

She still does not want to talk about how she is feeling, but it seems like she is seeing herself drifting into a new stage, and it concerns her. It seems like she is telling me with her behavior, “Richard, I am drifting away. I love you.” In the past I have wondered if she would ever reach a point that she would say something like this. I believe I would if I were in her position. Her way, however, is to express her appreciation without ever specifically and literally connecting it to her Alzheimer’s. She does say how much I do for her, that she couldn’t live without me, is so glad she has me, how much she loves me, etc.

I am beginning to think that this is the beginning of that stage of AD that we all imagine when the person who has it no longer connects with the world around her, doesn’t put up a front, and doesn’t even recognize her condition. Although Kate and I are quick to count our blessings, I can’t deny how much it hurts to watch her drift away like this. It also makes me very doubtful that our cruise next May and the trip to Chautauqua next June will come about. The cruise is not that big a deal, but Chautauqua has been such a special place for us that I don’t want to let that go easily.

Slight Unease in Public Gathering

Last night we went to a birthday party for our next door neighbor. It was a large gathering, perhaps as many as 150. There were many people we knew. We also go to the same church. Thus we had a lot of church members there as well as neighbors. In addition, there were other friends that we just happened to know. I had a good time. Kate did as well though she was not as enthusiastic about the event as I. At events like this, we often split up. That happened last night. I felt a little uneasy when it happened because of the large crowd and a feeling that she might feel lost when she didn’t know where I was. As it was, I believe I was the only one uneasy about being separated. On the other hand, I did get the impression that she was not enjoying herself as much as I. That is because I saw her a few times standing by herself while I was always engaged in conversation with somebody. At one point I saw her leave the room and walk down hallway toward the exit. She walked back before going very far.

Her behavior at the party makes me think that social situations like this are becoming more difficult for her. I suspect that the easy part is seeing someone, greeting them, and engaging in the usual small talk. After that, she may find it more challenging, especially when there are several people together, and she finds it difficult to process all that people are saying and respond appropriately. My assessment is that events like this are just too confusing for her.

Losing things

During the time we were in Chautauqua, Kate lost a sweater left under her seat at the opera and her purse that I left beside her seat at Scott Roselle’s radio talk show that we attended each morning. We recovered both of these. They had been delivered to the Lost and Found office.

On the trip home, Kate left her iPad either on the plane or the ladies room. We went back to both places and did not find it. On Monday I went out to buy another one. It was delivered to our house yesterday while we were in Nashville visiting with our friends, Angie and Tom Robinson.

While I can blame Kate’s Alzheimer’s for the major part of these losses, I feel responsibility as well. After all, I should be the one to make sure that we have all of her belongings. I am not good at remembering to get her things. I will continue to work on it, but I find, especially while traveling, I often have my own things to look out for, and it is easy not to take specific note of her things as well. I am far from perfect.

I am also thinking of the fact that I have lost her a number of times. That, too, is partially (perhaps largely) my fault. If I never let her out of my sight, this would not have happened.

Thoughts Niagara-on-the-Lake and Chautauqua

As we come to the end of our week at Chautauqua, we are a bit sad to leave. I don’t recall ever feeling any other way. This is clearly the most special place for us. Despite losing Kate three times, I have made arrangements to come back next year. This time for two weeks. I am influenced by several factors. First, this year’s visit has gone well. Second, Roger Rosenblatt will once again host a week with his “friends.” This is Kate’s favorite week. We have been here twice before when he has hosted this week. Third, lodging space is going fast, and I found a very convenient place a short distance from the Amp and across the street from the Brick Walk Café. In addition, it is on the first floor. Finally, I am able to purchase trip insurance that would I cover the cost of the two weeks if we are unable to make it.

Chautauqua will be our last holdout. I do not plan to cease coming until it really is impossible to do so. One of the things that will influence me in that decision is how to handle trips to the restrooms. That would be difficult in airports when she is unable to take care of herself. The same would be on the grounds here at Chautauqua.

Right now I can’t predict what she will be like next summer or in May when we are booked for a cruise from Rome to Amsterdam. At this point, I have found the risks involved in planning for such things are minimal. I suspect I will have a much better sense by the end of February when I have to make my next decision about the cruise. I can cancel without any financial cost before that time.

Lost a Third Time

I lost Kate once again, but this is the time that has concerned me most because I believe it signals a new stage in her decline. We had been to the Brick Walk Café to get her a Dr. Pepper. Then we went to the Maple Group Real Estate to arrange for next year’s visit to Chautauqua. From there we were going to watch the Scott Roselle Talk Show. As we passed by our apartment, I told Kate that I would like to get some papers up to the room and that I would be right back. When I got back, she wasn’t there. I looked all around and couldn’t find her. I went back to the Brick Walk Café, to Roselle’s show, in the library, around the Amp, as well as the streets around the inn and Bestor Plaza. While I was looking, I ran into a friend from Long Island. He offered to help me look for her. I told him he needn’t do that but he did anyway and stayed in touch by text. After an hour, I called the Chautauqua police and asked for their help. I gave him a description of her and what she was wearing. He said he would send someone to meet me at Heather’s Inn. In five minutes or so an officer arrived and took the same information from me. He said there would be two of them looking for her. He asked me to stay around the inn in case she showed up here. In about 20-25 minutes I got a call from the police saying they had found her and that they were taking her to the inn. I looked over there and saw her getting out of a security golf cart. I went over and thanked him. Kate did not seem flustered. I suspect that might have been a little different had the police not been there. She told the officer that I know how bad she is with directions. I gave her a hug, and we went upstairs to our apartment. Neither of us said anything about where she had been, how long she had been gone, or what had happened. We both understood just about all we needed to know. I did say, “I’ll bet you got hot.” She had been walking for an hour and a half. Later I asked her about her walking away. She did not want to talk about it. My interpretation is that she doesn’t really know what happened or why.

The troublesome aspect of this is that this Is the first time she has gotten lost by walking away, and it happened so quickly. In prior situations it has occurred because she did not follow me or she simply got lost because she forgot where she was supposed to go. I fear that this means she could mean we are reaching a point where I cannot trust that she will stay in a given location. This afternoon I did take a chance by leaving her at the apartment while I went to a session in which she had no interest. I was gone a little less than an hour. Before leaving I asked her to promise me she would not go anywhere. It was clear she understood why I said that and that this morning’s experience was one she didn’t want to relive. She said, “Believe me; I’m not going anywhere.” Of course, she may have already forgotten this experience. I know she will have forgotten by tomorrow morning.

Planning for Next Year

Despite losing Kate twice and experiencing several awkward or unpleasant moments, I am making plans for next year. I have found a place where we can stay the first two weeks of the season. It is a very short walk to the Amp and right across the street from the Brick Walk Café where we eat many of our meals. I get my coffee there each morning. It is also the primary place where we get ice cream.

Kate has enjoyed herself, but she gets bored a lot despite the activities. I am just grateful that she enjoys most of the lectures and entertainment because I know she can’t follow much of what she sees and hears. She gets irritated with me and not just in playful way. She resents my help. From my point of view, I see that she is not able to do many things; so that leads me to try to prevent problems.

The first part of the week she wore the same clothes three days in a row. After I suggested a change, she has worn a different outfit three days in a row. I didn’t even say anything to her. I did notice some soiled spots on her slacks and cleaned them off.

Her short-term memory creates some surprising experiences. For example, yesterday after the afternoon lecture, I asked if she would like to get some ice cream. She gave me a strange look but said she would. When we arrived at the café for ice cream, she wanted something more substantial. I got her a pizza and got an ice cream for me. She ate one small slice of her pizza and couldn’t eat any more. She said she wished she had gotten ice cream. At dinner she told the server she wanted water to drink. In a few minutes before our drinks were delivered, she asked the server for a Coke. She had completely forgotten that she had already ordered water. Yesterday afternoon she asked me a question. Then she said, “”Of course, I won’t remember it 10 minutes from now.” I told her that was all right. I would give her the answer again.

Losing Kate Again

This morning while Kate and I were seated on the front row of Scott Roselle’s talk radio show at Chautauqua, she got up and walked outside without saying a word. Knowing how geographically challenged she is, I got up and followed her. She appeared to be looking for something as she walked toward the front door of the bookstore. Before she got to it, she started up the steps to the post office. I called to her. She stopped and I asked her where she was going. She said she was going to the rest room. I told her the rest rooms were behind the library and took her there. I knew from past experienced that it would not be easy for her to find it. Before she went in, I pointed to the place where we had been and told her to meet me there. I said, “Just turn left when you come out.” Then I went back to where we had left our cushions and iPads on the front row of Roselle’s show. (BTW, he was interviewing Erik Larson.) I sat for a moment and then gathered our belongings and walked back to the restroom. I didn’t see her; so I waited outside the door. In a few minutes, a woman walked out. I described Kate and asked her if she had seen her. She said she hadn’t but went back in to look after I told her that Kate has Alzheimer’s. It turns out that Kate wasn’t there. That put me in a quandary. I looked for her for about 15 minutes, perhaps more, walking in the area near the restroom, the front of the library, the brick walk, and our apartment. I finally saw her standing in front of our apartment. She was looking at it as though she was confused as to whether this was the way into our apartment or not. I walked up to her. I didn’t say a word. I just put my arms around her. She rested her head on my shoulder. She didn’t say anything either. We haven’t spoken about it, but it was clear that she had been frightened and relieved to see me.

Resting

About 30 minutes ago, we came back to the apartment after the morning lecture, lunch, and catching part of a band concert on Bestor Plaza. Kate immediately went right to our bed and is still there. I am about to leave for the Hall of Philosophy for the 2:00 lecture. Afterwards I will return to get her for a 3:30 presentation by Amelia Arehart who has flown the flight of the original Amilia.

Change In Irritability?

Lately I have noticed what may be an increase in Kate’s irritability. Here is an example from this morning. This is our third day at Chautauqua, and she put on the same clothes she has worn at least the other 2 days. Last night I had reminded her that her suitcase was in the closet. Earlier this morning I put it beside the chest of drawers in our bedroom where she would see it. When I saw that she was wearing the same clothes, I said something about it. She did not take offense. I said, “Here is your suitcase.” She said sternly, “Put it on the bed.” Then she added, “How am I supposed to get it there (meaning by the chest)?”

Something else that could become a problem is a habit she has developed. It has two variations. The first is simply a very audible yawn. This is most common in the morning after she gets out of bed. It also occurs when she is tired or bored. While we were waiting for the opera to begin last night, she started yawning with the accompanying audible yawn. I said something to her about how loud she was. She was very irritated with me. I don’t know where this leads, but I fear that it will become something that is a bother to people around us. I remember that Sharon Billings said she carried a card with her to give to servers and others in restaurants and other places letting them know that her husband had Alzheimer’s. I may need this in the future.

Since beginning this post, Kate has changed her top, but is still wearing the same slacks. I cut her a couple of pieces of zucchini bread. She ate a banana and is now resting beside me on the sofa. This continues to be a pattern. It is as though getting up and eating something wears her out. I would think that her desire to rest relates to the strain of being outside the confines of her familiar territory; however, she does the same thing at home. The difference is that at home she always has the yard in which she can busy herself.

All these things continue to cause me to wonder if coming back to Chautauqua next summer is a good idea whether for one week or two. I really want to come back. She enjoys being here, and it seems easier for me to guide her into more things to do than at home. So far I have been unsuccessful in trying to get her to walk around the grounds. That seems like it would be something she would enjoy, but she reacts quickly and negatively when I suggest it.

Other Things I Notice

We are having a good day. We went to the Scott Roselle talk radio broadcast this morning. He interviewed David Harrison, our morning lecturer, who is a linguist and professor at Swarthmore. That was followed by the lecture itself. We were glad to have attended both. It was a great Chautauquq experience.

While at the Roselle broadcast, Scott asked the small audience if anyone would like to ask Harrison a question. The woman seated next to Kate raised her hand. He motioned her to come to the mike. Then they took a commercial break. As the woman started walking to the mike, another woman stepped in front of her and started a conversation with Harrison. In a couple of minutes, Kate decided she wanted to ask him a question; so she got up and positioned herself between the two women. When the first woman finished her conversation with Harrison, Kate jumped ahead of the woman who was the first one to want to ask a question. Then she talked long enough that it was time for Roselle to start up his interview again. Kate never realized what she had done. This is a good example of the effects of Alzheimer’s that do not directly involve memory.

That makes me think of something else that I observed that falls in this same category. While we were at breakfast at our B&B in Niagara-on-the-Lake, she spilled orange juice on the table as she was a pouring herself a glass. This could happen to anyone, but this kind of thing is especially common for Kate. Today as we were taking our food from the serving line to a table, she dropped her iPad. She had been struggling to carry her seat cushions and the tray on which she was carrying her food. Once again, this could happen to anyone. It is just far more common for her. It requires me to be on my toes, but I am always failing.