As we drove out of the driveway to dinner, I decided I wanted to get a little more from Kate about her experience with Mary. I said, “So you like Mary?” She answered with enthusiasm, “Yes, she is very nice.” Then I asked, “Do you like having someone with you while I am gone?” Again, she answered immediately and affirmatively. I consider this an even stronger statement. My optimism about bringing in help is increasing.
Today, Mary, the sitter, came back for her second visit. As Kate and I were nearing the end of our lunch, I mentioned that I was going to donate platelets and that Mary would be coming back again. Knowing that she would not remember Mary, I said she was the person who visited her last week. She gave me a look that implied she wasn’t thrilled about that. Although that did discourage me a little, I considered that she sometimes reacts the same way when I mention that a friend is coming over or that we are going to lunch with a friend. In these instances, I am confident that it is because she does not remember the person.
Mary arrived while Kate was outside cleaning out a flower bed in the front yard. I went out to tell Kate that I was going to leave for my platelet donation. Mary had gotten out of her car and was following me down the driveway. After my saying goodbye to Kate, she greeted Mary warmly. I felt good about that because it sounded so genuine.
When I returned home, Kate and Mary were seated in the family room where Kate was looking at a family photo album. Mary said Kate had shown it to her and taken her through the house. Kate had a smile on her face that indicated that she was very comfortable having Mary. Then Mary left. As she was walking out the door, Kate said, “She is really good.” I am back to feeling good again. The only thing is that Mary cannot come next Wednesday; so the agency is going to send yet another new sitter.
As I probably conveyed in my earlier posts, I have been elated over the new sitter who has been with us twice. Today she failed us. I had planned two meetings this afternoon specifically because we would have a sitter. The first was with my friend, Mark, who is serving as an editor of my journal and uploading it to my blog. The second was a meeting I had arranged three weeks ago with our accountant.
Kate was tired this morning. She got up and had some juice and went back to bed. When she was still sleeping at 10:00, I was not worried and decided to let her sleep as long as she wanted. By 11:00, I felt I had to wake her up in order to permit her time to get ready for lunch and for us to go to lunch before we came back to the house in time to meet the sitter at 1:00. I try not to rush Kate and have found that this prevents problems. I checked on Kate shortly after 11:30. She wasn’t ready and asked me not to rush her. I went back one more time which irritated her. We finally got to lunch at 12:15. We had our meal at 12:28. I had to rush her to eat, and we left for home at 12:50. We were home at 12:55.
The sitter had arrived on time on her previous two visits. Today she was late. When she hadn’t arrived by 1:15, I called the agency. They tried to reach her unsuccessfully. I told them I could easily cancel the first meeting but that I really need to make the second one. They arranged for a replacement who arrived about 2:20. That gave me a short time to brief her before I left.
Kate had gone directly outside after we returned home from lunch. When I saw her working in the driveway about the time the sitter was to arrive at 1:05, I asked her to move to another location because I didn’t want to risk the sitter’s driving in the driveway in a hurry and hit her. Kate decided to come inside and got in the bed. She was resting when the replacement arrived. After giving her a short briefing, I got Kate up and introduced them to each other. Kate was just a little big groggy and not as awake as I would have liked, but I had to go. Kate decided she would go outside and was headed there when I left.
When I returned close to 5:00, the sitter was in the family room. Kate was in our bedroom working on her iPad. I thought that was fine but was a little disappointed because she had remained in the family room with the previous sitter even though Kate was resting on the sofa. It made me think that she had not been enthusiastic about the new sitter. After the sitter left, I was eager to hear what Kate thought about her. I went back to the bedroom where she had picked up her iPad. I said, “She seems nice.” She said, “Very nice.” That was all we said, but that was enough. I had feared that she might have had a negative impression. Even if she was not as enthusiastic as I had hoped, it was a positive response and definitely not negative.
I actually like the new sitter. Her name is Mary, and she is older than the one she replaced. Her husband is retired from the UT Medical Center. She has a daughter in college and a daughter in high school. She has been working for the agency since 2004. She is scheduled to return on Friday, but she is not available on Mondays at all. That means we may end up with at least two different sitters, one for Monday and another for Wednesday and Friday.
I will call the agency in the morning to discuss where we go from here, but it was a great disappointment that the original sitter did not show up. The agency told me that they would have to let her go for that. I have mixed feelings about that because I really liked her, but I also understand that the agency cannot accept “no shows.” It is a good illustration of what happens when trust is broken. I hope we can soon work out the kinks we are running into.
I always love to report that we have good days even 6 ½ years after Kate’s diagnosis. Of course, I wish that I could report this more often, but that is not realistic given the nature of Alzheimer’s. It is clear that Kate’s mood plays a significant part in making these days happen. From the very start of the day right until this moment, she has simply been in a good mood. We both have enjoyed the day. I have to say it wasn’t that we did anything special. It was that she was happy with everything we did. This reminds me of that of expression that success if not getting what makes you happy but being happy with what you get.
She was up earlier than usual this morning. About 8:30, I went back to the bedroom to see if she were still in bed. I found that she was not only up but dressed and just about ready to go to Panera. We were there before 9:00. She was happy on the way to Panera and throughout the time we were there. One of the people we see there frequently was by himself today and sat at a table across from us. We (he and I) talked for about an hour while Kate worked on her iPad. She never showed any boredom or eagerness to leave. About 10:30, she did indicate that she would like to go home and we did. Just before 11:30, I told her it was time for lunch. She came in right away, and we left for Carla’s where we usually go on Tuesday. From there we drove to the Acura dealer for routine servicing of my car. We were there about an hour and 20 minutes. Again, she was not restless. She simply worked on her iPad while I edited a slide show of photos taken during a 1976 trip to Colombia. We came right home, and she went back outside to work in the yard until I called her in to get ready for dinner.
She ate every bite of her dinner and commented on how good it was. We came home, and she changed into her night clothes and got ready for bed. She was still in a good mood.
Today Kate had her second visit with Anita, the new sitter. I am glad to report that it went well. I didn’t mention it to Kate until just before she arrived. Then I told her I was going to Rotary and to the Y and that Anita, the woman who stayed with her last week was coming. Kate didn’t remember her. (I would have been amazed if she had.) I reminded her that I had asked someone to stay with her when I go out. She said okay. That was it. When she saw Anita, she greeted her warmly. I felt good when I left, but I couldn’t help wondering how things were going while I was gone. When I returned home exactly 4 hours after leaving, I found the two of them in the family room. Kate was resting on the sofa. Anita was seated in a chair opposite her with the TV on. They had gotten along just fine. After Anita left, I asked Kate if she liked having someone here when I am gone. She said, “Yes, especially her. What’s her name again?” I am very pleased.
We are seated at a table at Panera. A moment ago, she accidentally lifted her plate off the table and then dropped it. It made a noise, and she audibly reacted. That is no surprise. These kinds of things happen regularly when she heard a sudden noise. In this case, I said, “This time you scared yourself.” She answered, “Not scared. Startled. There is a difference you know. (Pause.) I am a former English teacher.” She smiled.
After our experience at the movie on Friday, I was looking for another way to entertain Kate yesterday. It has been a few days short of a month since we last visited Ellen; so I thought that might be a good thing for us. Typically, I arrange these visits several days to a week in advance. That way I can also coordinate with other friends in Nashville. I try to have lunch with one of them on each of our monthly (or almost monthly) visits to Ellen. This time I made the decision yesterday morning and decided it was too late to arrange something with our friends. Besides, Kate had gotten up later yesterday, and we would have been rushed to get her muffin at Panera. It just wouldn’t have worked.
Before Kate got dressed, I decided to ask her if she would like to visit Ellen. She said that would be nice. While she has always been interested in visiting Ellen, she has seemed increasingly compliant or agreeable at my suggestions. In the same way that she seems to feel a sense of relief that I will take care of ordering her food in restaurants, she seems to be accepting of the things I choose for us to do. The exception is when I suggest seeing someone whom she doesn’t recall. I think she feels a bit insecure when this happens. Once we meet the person, she is fine.
A good example of this insecurity occurred on Thursday. One of her high school friends, Meg Wright had called me to arrange a good time to call Kate. We decided on Thursday afternoon. When I told Kate, she immediately said, “What am I going to talk about?” She has said the same thing when I have mentioned having lunch with one of the couples in Nashville.
We were quite leisurely in leaving for Nashville. I didn’t want to rush Kate unnecessarily. I have found this works well. We went to Panera and then had our regular lunch at Bluefish. This has become a nice Saturday treat. While it doesn’t cost significantly more than other restaurants we frequent, it is a little nicer. I like its ambiance, and it is quiet. Our server, Abby, takes good care of us and gives us a hug when we arrived and when we leave.
From Bluefish, we were on our way and arrived at Ellen’s close the 3:00. She lives in a very nice assisted living facility that also has a memory care section where Ellen has lived since May. We had a nice visit although we thought her speech was more difficult to understand since our visit in August. We were with her almost two full hours and had a good time. I tried not to talk too much in order to enable Kate and Ellen to talk to each other. That is a problem because Kate wears down over a two-hour period, and Ellen is difficult to understand. It is difficult for Kate because of her memory loss. That leaves her with few things to talk about. That is why she gravitates to her family. In that regard, she twice mentioned her grandmother as someone who was ahead of her time because she saw and welcomed a day when blacks and whites would be in the same classrooms. I have never heard about anything like this before. I believe it is just one of the types of things she creates. I have observed that on other occasions. I think something just pops into her head, and she feels like it happened.
It was late when we got back to Knoxville. We dropped by Gregory’s for dinner. We sat at a table that was very close to the entrance to ladies room. I pointed to it and asked Kate if she might like to use it before we ate. She did. While she was gone, I pulled out my phone and was looking at some Facebook posts. When Kate didn’t return in what I thought was a reasonable period of time, I got up and looked around the room and then went into an adjoining room where the bar is located. I didn’t see her and went back to the table. In a few minutes, our waiter came to me and asked if I was waiting for my wife. I told him I was. Then he told me that she was sitting at another table in a section on the other side of the bar. I went around and got her. She was drinking a glass of water that a waiter had brought her.
Kate wasn’t fazed in any way by the experience. She was just as she has been in every experience in which I have lost her. She goes to some location and waits for me to find her. As I escorted her back to our table, she said she wasn’t worried at all (and seemed not to be). I told her she had done the right thing to wait for me to find her and that I will always find her. She said, “I know you will.”
As we got in the car, Kate had to spit and when she did it went on the dashboard. This is not something she would ever have done in the past but is becoming more frequent.
This afternoon Kate and I went to a movie, Columbus, at The Flick. This is the second time at there this week. Two days ago is when I made the entry about her being angry with me over not recognizing her salivation issue that lasted for the entire movie. Today I went with a minor concern over whether or not she would like the film, not thinking about salivation. After picking up our tickets and ordering soft drinks, we started to enter the theater when Kate asked for a napkin. I went back to the lobby and picked up several of them knowing that one would never be enough.
We went through the introductory video with recognition of the donors and some advertising as well as the previews. She used one napkin and asked for another about the time the film started. That left me with only one. At that point I knew she would not have enough to get through the movie, but I didn’t worry because she doesn’t usually have napkins throughout a movie. Today I was more sensitive to her salivation than two days ago. She was obviously struggling. She burped out loud a number of times and had used up her last napkin. I was getting concerned about burping and the possibility that it was loud enough to be annoying to others. I asked her if she thought we should leave. She nodded. We got up and left. As we walked to the car, I asked if she could explain what she was feeling. I asked if it seemed just like ordinary saliva. She said it was. I then asked if it was coming up from the throat or within her mouth. With her hands, she indicated that it was coming up from the throat. I then asked if she were able to swallow the saliva. She tried and was successful. I told her to keep doing that and see if that helped. She did. I didn’t say anything more.
She continued to have the problem all the way home but did not burp again. She did stop swallowing the saliva and kept a napkin to her mouth until we reached home. When we got home, she wanted to know if she could work outside. I told her that would be fine. As she is accustomed to doing now, she asked if she could use the clippers. Then she asked me where she could go. I told her she could choose to start any place she would like. She said the thought she would start out front and looked to see if that were all right. I told her that would be fine. We were now back to normal.
I should comment on what I mean by normal. It still appears that she doesn’t swallow her saliva most of the time. As I noted a week or two ago, she does periodically stop. I suspect that when for some unknown reason she thinks about the salivation, she stops swallowing. In the case of the movie, she is very inactive and, perhaps, that heightens her awareness of salivation. Then she has a reaction like many I have witnessed before. The interesting thing is that she uses paper products to wipe away the saliva all the time; however, she doesn’t always have the negative emotional response that she had on Wednesday and today. I don’t yet have an explanation for that.
I was so relieved that Kate had accepted and enjoyed the new sitter yesterday that I neglected to make another comment that is relevant to her whole journey. Her willingness to accept the sitter and her actually saying that Anita is her “guardian” or “companion” is a significant indicator of a newer stage in her illness. In some ways, it seems rather natural. After all, she has gradually given up lots of her independence. At the same time, the fact that I was so concerned about how she would feel about a sitter is an indication that I didn’t think she had reached such a compliant stage. This is another illustration of how even someone as close to her as I am could misjudge her decline
So I have mixed feelings about Kate’s reaction. I am glad it was easy for her to accept a sitter. On the other hand, I am once again saddened by another sign of where we are headed.
Kate and I went to dinner and a movie tonight. The latter is a rarity for us now. I have not been scheduling anything at night beyond dinner for several months now. This time, however, The Flick, our favorite theater, had a Thai film that started at 7:00. It sounded intriguing, and I thought it was worth a try. During dinner, I was thinking about how well the visit with the sitter had gone. I also felt I should add another journal entry specifically about how good-natured Kate has been today. Right now I want to make it clear that she seemed remarkably agreeable and at ease. It was not only how she received the sitter but also how she responded to my help on getting her clothes to wear out this evening.
What I didn’t anticipate was how radically her mood would change as we left the movie. On the way to the car she mentioned how miserable she had been in the movie. I thought that was because she didn’t like the movie. It turned out that it was the result of not having paper napkins or some other paper product to Wipe the saliva from her mouth. I discovered this when I inquired as to why she had been so miserable. She let me know it was because she didn’t have any napkins. Then I made the fatal error of telling her that I wish she had told me because I had taken several napkins into the theater with me just in case she needed them. To my surprise that angered her because I had not offered them to her. I told her that I didn’t recognize that she had been miserable. She said I must not care for her very much if I didn’t notice her misery. I gave her a couple of napkins. “Too little, too late.”
In the car on the way home, she said in a very angry tone of voice, “And I have never exaggerated.” I told her I hadn’t said that. She said, “You certainly did just a little while ago.” I let it go because I could tell this was one of those instances in which she had had some kind of misperceptions (delusion) that I had done so, and it would do no good to argue. Later at home she expressed the strongest anger I have ever heard from her. Unprompted, she said, “I have never exaggerated about anything.” I told I knew that she never exaggerated. She didn’t say anything for a while. My impression was that she had gotten emotional over her salivation. She was burping and making other noises. In a few minutes, she came out of the bathroom with some toilet tissue that she was holding to her mouth. I told her I wished there were something I could do to help her. She looked at me and spoke in a gentle kind voice, “Oh, I’m fine.” She seems to be back to normal right now.