It has been a while since I have mentioned it, but Kate’s Deja vu experiences have not subsided. In fact, they may be even more frequent now than in the past. When we drive down the road leaving from or returning to our house, she frequently notices people walking or running and says, “Remember him/her.” She is trying to get me to remember the next time she sees them. The same thing occurs in restaurants. Sometimes she sees people in more than one booth or table that she says she sees a lot at that particular restaurant.
How quickly things can change. After a lengthy period of joy and contentment (as expressed in my previous post), last night we hit a low point. About 5:00 Kate came into the kitchen where I was working on the computer. I could see immediately that she was wearing a sad face. I got up, walked over to her, and asked, “Bored?” (This is an increasingly common complaint.) She answered, “Bored and hungry.” I told her we could go to an early dinner and started to offer a few suggested places when she asked, “Would you take me to Chalupas?” This is her favorite Mexican restaurant. She seems to see it as a place of comfort. I am not sure whether it is just the food or the food and the general atmosphere of the place. We know the owner and almost all of the servers with whom I always engage in conversations in Spanish. She likes hearing me speak Spanish and likes the people there.
At any rate, I told her I would be glad to take her and said something like this. “You really like that place. This would be the third time we have eaten there in the past 7-8 days.” She said she hadn’t realized that and we could go some other place. I told her I would be glad to take her, but I wanted to get something different for myself. Then I told her I could just get a single cheese burrito and then have some V8 when I got back home. (This represents one of the challenges I have eating out with Kate. She loves carbs. In the past week we have eaten Mexican 3 times, pizza twice (2 nights in succession), pancakes for breakfast, ice cream at Marble Slab, and a bigger-than-usual meal with cheesecake at Casa Bella. I have gained 4 pounds in the last week and my stomach is feeling a little bloated; so I feel the need of something lighter than what she likes.
As we were walking out the door for the restaurant, she said, “I hate being so dependent on you.” Before getting to the car, she said, “I could live to be 90.” She seemed quite depressed. Although I tried to reassure her that I was happy to take care of her, this didn’t help. She perked up a little while at the restaurant, but her being dependent was clearly still on her mind. While we were in the car coming home, I suggested that we look for a movie on TV. Then I suggested watching “Doc Martin,” a BBC series that is available through Netflix. When we got home, I started thinking about something lighter and more upbeat and suggested we might find an old Andy Griffith or something similar. She liked that. I got on Netflix and search for Dick van Dyke and found it. We ended up watching 4 episodes, and she loved it; so did I. When we turned off the TV and went to bed, everything seemed all right. I was wrong. I heard her get up just after 11:00 and go into her office. In a few minutes, I went in and found her in the bed with the TV turned on to an old black-and-white movie. She has always found comfort in having the TV on when she is trying to go to sleep. She told me she couldn’t sleep, something very unusual these days. I asked if she wouldn’t like to come back to bed with me and that we could turn on the TV or listen to music. She chose music. It took a while for us to get back to sleep, but we did and slept until almost 7:00 this morning.
She wanted to go to Lowe’s for more plants. We did so around 9:00. Right now she is outside planting them. It is cooler this morning. I will let her stay out as long as she likes because I feel it is her therapy. Then we will go to lunch. I hope the depression goes away before evening.
The past week has been good. More specifically, Kate has been much less irritable. Indeed, she has shown hardly any signs of irritability. It hasn’t been just the lack of irritability but genuine expressions of affection during the week. Even as I say this I have to add that it is not as though she doesn’t regularly express affection. It is that I have seen her irritability with me replaced with more affectionate responses.
The interesting thing to me is what a difference it can make in the feelings of a caregiver. It has enabled me to experience less frustration and derive more enjoyment of being with her. Even moments when I needed to encourage her to get ready for us to be someplace have been dealt with more like pre-Alzheimer’s days.
Yesterday we both had an affectionate experience at the same time. We were in the car driving home from Lowe’s. I turned on a CD by Ronnie Milsap. He was singing “What a Difference You’ve Made in My Life.” I have heard this song many times in the past, but for the first time I thought about our relationship and what a difference she has made in my life. Then she said (without my saying anything to prompt her), “You know, that ought to be our theme song.” I told her I had been thinking the same thing. We then talked about the coincidence of our reflecting on the song and our relationship but had never done so before.
To me it is clear that Kate’s Alzheimer’s affects both of us in ways that are directly obvious to others. I have found another song sung by Linda Eder called “If I Should Lose My Way.” The line in the song is “If I should lose my way, please look for me.” I have taken that as though it were a message from Kate to me and that she is losing her way.
It has been a week and two days since we visited the Robinsons. Since that time, I have noticed more periods of time when Kate is tired. It seems to be most striking late in the afternoon and after dinner as well. Several times in the past week she has been ready to go to bed shortly after returning from dinner though I believe the earliest she has actually called it a day was 8:30. She hasn’t stayed up past 9:00 that I recall. Since she goes to bed that early she wakes up early but isn’ Continue reading “Getting Tired”
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.
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.
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.
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.
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.
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.