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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.

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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.

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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.

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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.

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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.

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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.

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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.

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Lost At Chautauqua

It is only our first whole day at Chautauqua, but I lost Kate this afternoon about 20-30 minutes after we had been to a play. After the play, we walked by the St. Elmo. She wanted to go in a couple of shops that are on the lower level. I took a couple of photos outside. When I finished, I went downstairs to the shops. I saw her in a shop and waited outside the door to connect with her when she finished. When she didn’t come out in about 10 minutes, I went in to find her. She wasn’t there. I asked someone who works there if she had seen her. She didn’t remember her. I then learned that there is another entrance and exit to the shop. I looked through the other shops and had someone check the ladies room. No sign of her. I went outside thinking that she might be waiting there. Still no sign of her. I went back to the shop where I had been waiting and told the person I was going back to our apartment. She wasn’t there. That didn’t surprise me. I didn’t think she would even remember the name. I went back to St. Elmo. She was nowhere to be found. I waited outside looking in all directions. Then I got a phone call. It was Kate. She had borrowed someone’s phone to call me. She told me where she was. I told her to wait right there. She had gone in a direction completely away from the St. Elmo as well as our apartment. She said she felt foolish. She hadn’t remembered the name of the place we are staying. I have now given her one of my business cards with the name and address of our apartment.

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Our Trip to Niagara-on-the-Lake

I am letting Kate sleep a little longer this morning while I check email, read the paper and write down a few thoughts on the last couple of days. As I was writing, she got up. This works well. We are not in a hurry this morning, but if we can get away by 10 or 10:30, we will get to the Italian Fisherman on Chautauqua Lake for lunch before the crowd arrives. We can have a leisurely lunch and then get to Chautauqua  around 2:00 or 2:30.

So far it has been a good trip, but we have had a few challenging moments. As usual, I had some difficulty getting Kate started on her packing. The problem for me is that if I don’t try to get her started, she won’t get ready at all. On the other hand, if I do let her know it is time to get ready, she resents it and takes a passive aggressive stance. She usually says something like, “I’ll get ready. Leave me alone.” Her tone of voice captures her irritation with me. This is what happened the afternoon before we left. The morning we left, she still wasn’t dressed 30 minutes before leaving for the airport. When I told her how much time we had, she became irritated and asked me to leave her alone. She was quite upset when we left about 10 minutes later than I had planned. Fortunately, I try to allow plenty of time to permit short delays like this. On the way to the airport, she said, “You should just shoot me.” This is something she says periodically though not frequently. My interpretation of what has occurred is that she does in fact resent my efforts to get her ready, and she blames me for being anal. At the same time, she really does recognize her own role in these occurrences and probably links it to her Alzheimer’s.

She and I have both enjoyed our stay in Niagara-on-the-Lake. We saw three plays yesterday. All were well acted and staged. She enjoyed a long conversation we had with our neighbors in the room next door the first afternoon. Yesterday she seemed tired even though she slept well the night before. She lay in the bed after breakfast and took a nap after lunch. Then we attended another play at 2:00 that ended at 4:30. She was tired and took another nap. While she was resting (not sure if she actually went to sleep), I went out on the porch and visited with our neighbors again. When I came back in, she was sitting up in bed working a jigsaw puzzle. She looked a little irritated with me. I think she may have resented my having spent so much time talking with the neighbors. I asked if she wanted to get something to eat. She said she did but wanted to finish what she was doing. She then took another 10-15 minutes until I asked if she were ready to go eat. She got up. She acted very sleepy and did not speak much at all through dinner.

At intermission, she waited until it was almost time to go back in the theater before asking for something to drink. She started drinking it as they rang for us to return. She had done something similar at the earlier play in the afternoon. I believe this kind of thing occurs because she does not have a sense of time. She is simply unable to judge how much time she has and what she can accomplish in that time. I know it must be frustrating for her as well. In both of these instances She had to dispose of her drink before finishing it.

Addendum to Post Above

We are back from our breakfast. Kate immediately got into the bed and is resting. This, as I have mentioned in other posts, continues to be a pattern for her. While at breakfast she got up and sat at another table that she thought looked cozy. When our host at our B&B brought our omelets, she got up. I thought she was coming back to the table, but she walked through the garden in front of the porch where we had been seated and then stopped by another table and talked about 10 minutes talking with guests at another table. I wanted to get up and bring her back to our table but decided not to do so because she seemed to be enjoying herself. I just hated to interrupt her.

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Booked a Cruise

Last night I bit the bullet and booked a 13-day cruise from Rome to Amsterdam. I had requested information on the cruise on their website on Monday and received an email that night. I sent an email asking about cancellation penalties if we should not be able to make the trip. I told him about Kate’s Alzheimer’s. His email response indicated that we could book for $600 and cancel up to Feb. 23, 2016. At that time we could purchase insurance that would cover the balance of the period before and during the trip. I called to talk with him after dinner last night. I discovered that the rooms were going rather quickly as this would be the christening cruise for one of their new ships. After asking questions and checking room availability. I went ahead with the booking figuring that I should have a much better idea of whether or not we can do it by Feb. 23.

Tomorrow we leave for Niagara-on-the-Lake and Chautauqua. We return on Saturday night, August 8. Things continue to go well though Kate’s short-term memory still brings surprises and requires careful coordination. For example, last Friday night after seeing Dreamgirls at the Bijou, Ellen told us she was having abdominal pain and that it was similar to what she had felt when she had had a kidney stone about 7 years ago. We ended up in the emergency room at Providence until almost 3:00 a.m. We got to bed at 3:30 and I was up at 7:30. Kate slept a little later. At lunch I asked her if she felt sleepy. She looked puzzled and asked why I would ask that. I explained that I thought maybe she hadn’t slept well. She said she had slept fine. It was clear that she had forgotten that we had been at the hospital with Ellen most of the night.

Yesterday we had a bump in the road. I had hired someone to power wash our patio, driveway, and brick wall. We had been to Lowe’s yesterday morning to buy some plants, and Kate had taken a large plastic container that I use in the trunk of the car when we bring home plants. This helps protect the trunk of the car. At any rate she had left it outside. It had rained and had created a mess in the container. She took it around back and dumped it out on the freshly clean drive right behind the garage. I reacted immediately and said something like “I just paid the guy the clean this.” That was all it took. She said, “I can never do anything right.” I have learned it is better for me not to say anything after a misstep like that. She went on to talk about how picky I am. Fortunately she calmed down, and it was all forgotten.

Then tonight we had another hiccup when I asked her if she had packed the new clothes she had bought the other day. She looked puzzled. I know that she has no idea where they are. She was frustrated and asked me to help her when we got back home from dinner. I told her I loved her, that I wanted to help her so much, but she wouldn’t let me. At least two of the outfits she had been pleased with and believed would be ideal for Chautauqua. My problem is that she won’t let me help her put them up so I know where they are. I also try to take pictures of new clothes, but she put them up before I could take pictures. It is frustrating for me, and I know it must be even more so for her.