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.
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.
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.
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.
All is well
I realize that I write most of my entries when something of significance occurs (usually something I feel is not so good). Right now I feel that Kate seems to be on a plateau. She is not any better than she was before, but she seems to be content. We continue to enjoy doing things and enjoy each other’s company.
Today she has been outside since we returned from our Y breakfast this morning. We also stopped at Lowe’s along the way. It must have been 9:45 when we returned. I had a board luncheon at noon; so she made do with a leftover sandwich and yogurt for her lunch. I suspect she only came in to get something to eat and/or drink and went back outside. It is now 3:50 and I got home around 1:45. She has been outside the whole time. At least she enjoys what she is doing.
The most troublesome symptom lately has been her boredom around the house. She still is able to do only jigsaw puzzles, work on the computer (photos), and the yard. She has also been doing some organizing of her clothes recently. The rooms don’t look as much in disarray as they have in the past.
She still gets irritated with me when we are going places. That is because I try to keep her posted on how much time we have. When I am able, I just let her take as much time as she needs. That works out well. I am coming to the end of my board responsibility with the foundation at the end of September. That will give me more free time. We should have fewer problems in the future.
Because of her boredom, I have been more diligent in trying to keep her entertained. I am even beginning to think about another trip, a cruise from Rome to Amsterdam next May. I am in a quandary trying to assess the risk of doing so. If her condition next May is the way it is now, I wouldn’t hesitate. I just don’t know. I am definitely leaning toward taking a chance and buying the insurance if it will cover pre-existing conditions.
Little Changes
In the past I have noted things like the Deja vu experiences that I haven’t normally considered symptoms of Alzheimer’s. I am noticing more recently. For example yesterday while at lunch, she asked me if I had paid her DAR dues. I told her I hadn’t and indicated that to the best of my knowledge she was not a member of DAR. She then went on to tell me that she had at least visited one of their meetings and was impressed with the women and how smart they are and how much they knew about South Carolina. That rang a bell with me. She was thinking about AAUW. She had attended a meeting of theirs about 6-8 months ago and told me the same story.
On the way home from dinner last night, she told me she wanted to show me where she had planted her plants. I assumed she was talking about the ones we had bought this afternoon. I didn’t think she had had enough time to plant them before dinner and hadn’t seen her go outside. In fact, she was still wearing the clothes she had worn to lunch. They didn’t bear any signs of her having worked in the yard. I said, “Do you mean the plants we just bought this afternoon?” She indicated yes. When I drove in the driveway, I could see all of the plants. They were left just where we had put them when we got home. I didn’t say anything. We got out of the car, and she walked me along the drive and out toward the front of the house. It didn’t appear that she could remember where she had put them but showed me plants that she had planted yesterday or the day before. I didn’t correct her.
Last night after dinner, we got in the pool. She seemed to get quite relaxed as she moved around. She began to talk more than she normally does. Most of the things she said involved the yard and what she was doing. At one point she pointed to the neighbors Legustrums. She told me that she had been pulling leaves off of them where they were hanging over their fence and near our wall. I can’t imagine that she had done so because of the height of the shrubs. She wouldn’t have been able to reach without a ladder. Then she told me that she was clearing out the space between the neighbor’s fence and our wall so that she could put plants there. This is a bizarre idea since no one would be able to see them at all. In fact, you can’t even get to the space unless you go to the end of our wall and walk through the 3-foot space between their fence and our wall. This kind of talk seems more like that of someone with a psychotic issue. As I am noticing and learning, I am thinking that the damage done to the brain by Alzheimer’s can cause a variety of symptoms in the same way as mental illness.
I continue to see short-term memories but cannot tell if it is any worse now than several weeks ago. On Saturday I took her to get a pedicure and manicure. When I picked her up, I paid, and gave her money to give the person as a tip. She hesitated and asked the receptionist if he could give the tip to the manicurist. As we were walking out to the car, she told me she did that because she couldn’t remember who had been the manicurist.
Another symptom that I have mentioned before is she fails to notice lots of things happening around her. This includes missing visual things as well as information in conversations. It is as though all stimuli are overwhelming. One small example occurred two times in as many days. The first occurred yesterday when I put on a new shirt that is quite colorful. She has never been one to notice many of the things I wear, but this shirt should have stood out. She never said a word. I wore another similar shirt in terms of brightness today. She hasn’t said anything. Another example comes from dinner last night. We split a pasta dish called seafood gorgonzola. It had shrimp, scallops, mushrooms, and bell peppers in a gorgonzola sauce. She got full before finishing her pasta. I noticed that she had not eaten all of the mushrooms and made a comment to that effect. It was on top center of the pasta, but she could not see it. To be sure it was not a large piece, but it was large enough that she would have seen it easily before Alzheimer’s.
Before finishing this entry, I feel the need to say that we are getting along well right now. I suspect that I am becoming more accustomed to her failing short-term memory. She is getting more childlike, but we get along well except for moments when she is irritated with me. That never lasts long. We are fortunate.
Deja Vu Experiences
It has been a while since I have mentioned it, but Kate continues to have Deja vu experiences. For example, yesterday or the day before, we were driving on our way to church. We saw two women walking on the sidewalk. She pointed out that she has seen them before walking along about “this time.” Of course, it is really doubtful because she doesn’t have a car, especially this time of morning. A little later she saw someone else and said she had seen him before. At Panera in the past few days, she has pointed out people she has seen before. This even happens in places where we have not been before. I never challenge her or tell her she couldn’t have seen them before. There would be no purpose in doing so, and it might hurt her. It is amazing how natural it is to want to correct someone. It requires self-control. Once in a while, I find myself failing in this respect.
These kinds of experiences make it clear to me that Alzheimer’s not only affects the memory but also other aspects of the brain. Another example of that occurred yesterday. When I arrived home, I discovered that she had brought in the garbage bin from the street after the garbage had been picked up. She had left it out instead of returning it to the garage where we keep it. When I looked in it, I saw that she had put yard trash in it, something she would not have ordinarily done before Alzheimer’s.
While at the office yesterday morning, I called our former dentist, Hank Noble, to see if we could get together again. It has been several months since we last did so. We talked about 20-30 minutes and set a day next week to meet for coffee at Eggs Up. I had a feeling that I had gotten the very first time we talked. He is suffering much more than I am. He says he is getting along well but then what he says lets you know he is troubled. He told me that he was having difficulty making himself do little things like write checks to pay bills. Another friend told him that he was depressed. Hank said, “I don’t feel like I am depressed, but I guess that is what it is.” Another indication of his depression is that he said he needs to begin thinking about possible arrangements with some kind of facility for his wife. He said that he hasn’t been able to make himself think about it as though if he doesn’t think about it, it will go away.
He asked how we were doing. When I told him about our having had good trips to Switzerland and New York and that we had gone paragliding in Switzerland, he was amazed. He expressed a touch of envy that we were getting along so well. I will have to be very careful in our future conversations not to make him feel badly about this. I did tell him that our time is coming, that we had been very fortunate, and that both Kate and I often talk about how grateful we are for our circumstances. He reiterated how fortunate he and his wife are that that have the financial resources to provide the care that his wife needs. He has had 24/7 care for 8-12 months or so. His wife can’t walk on her own and cannot feed herself. He indicated how hard it was for him to look across the room at his wife with her head slumped toward her breast much like we envision those in nursing homes. He says he sometimes just has to get up and leave the room. He misses conversation with her. He had told me that the previous time we spoke.
I plan to stay in touch with him even though I don’t feel he is in a position to provide me a great deal of support. I feel I will be able to help him more than the reverse. There is another way to look at it, however. I draw strength from people whenever I am around them (most people at least). It isn’t necessary for him to express any special concern or support for me to benefit or be strengthened. Just having another person to talk with will help me down the line. I am thinking about the time when Kate has progressed much further than she has now. At some point, his wife will pass away. At that point, he may not feel the need to get together.
Taking Stock Two Weeks After Travel
Since our return from New York, I have been unusually tired. This is something I have rarely felt before. On several occasions upon waking, I felt as though I would like to remain in bed. I must also say that I have not been sleeping as well since our return. Surely this is part of the reason. I have also wondered if I am not having a general let down after planning and anticipating our two big trips (Switzerland and NYC) that occurred so close together. All along I have looked upon both of them as the last such trips of this nature that we are likely to make. Since returning home, I have done some reflecting on this and am leaving open the possibility of at least one other trip overseas. I still think the likelihood is slim. I am certainly not going to do anything sooner than the next 6-8 months. By that time, Kate’s condition may have deteriorated to the point that it is very clear that we can’t do it. On the other hand, it may be possible to either attempt a cruise in which we don’t do the excursions but simply enjoy life on board and on shore around the port area. Another possibility would be to go to a place like Santa Fe and stay there for a week or so. Right now I am not going to plan anything. I intend to assess how well we get along at Chautauqua. I suspect I will have sufficient doubts about going back in 2016 that I won’t make plans a year in advance.
