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Visit with Ellen

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.

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Salivation Problem

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.

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Another Marker on Our Journey

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.

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Another First (or Second) with Anger

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.

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Success with New Sitter

I am happy to report that Kate’s response to the new sitter, Anita, was a smashing success. Kate liked her and accepted her immediately after meeting her. Anita arrived about five minutes early (a good sign). Kate was working outside when she drove into the driveway. I went out to meet her while Kate continued tending to her shrubs. I took about 10 minutes to brief Anita on my expectations and to explain a few things. Then I went outside to invite Kate to meet her. Kate was very compliant, coming right in when I called her.

I brought her into the family room where I had left Anita. As I introduced her to Kate, I said, “You remember that I have not felt good about leaving you alone. I am going to the Y and then to meet Mark for coffee. Dee is . . .” At this point, Kate said, “is my ‘guardian’.” This was said in a very natural, positive manner. That led us into a brief conversation about ourselves just to get acquainted. I had an immediate liking for Anita whose has a beautiful smile and great warmth. I mentioned that Kate likes to work outside and that she might want to do that while I was gone. Then Kate asked Anita if she would want to work with her. Anita said she would be happy to stay with her outside. I told them they could choose what they wanted to do. I didn’t want either of them to feel they needed to spend the next 3 ½ hours outside. I knew that might not be a problem for Kate but wasn’t sure about Anita. Before I left, Kate mentioned another time that she was her guardian.

I returned home about 4:45, 15 minutes before Anita was to leave. I found both of them in the front yard where I had left them only Kate was on the ground pulling weeds out of the flower bed in front of the house. Anita was standing near her. When I walked over to them I commented on the fact that they were still outside. Kate said something about their enjoying themselves and that Anita had been her “companion.” Before Anita left, Kate mentioned one more time that she was her companion and that she had enjoyed her.

When we got inside, Kate commented on how Anita knows just what to say. What a relief for me. It seems like Kate has completely accepted her. I am going to feel a whole lot better about leaving from now on.

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Challenges of No Short-term Memory

I don’t think I have mentioned that Hurricane Irma hit the Caribbean and the Southeastern states over the past week. This has been very big news because of the size and winds of this particular storm. It is one of the largest Atlantic storms on record. Current estimates are unclear right now, but I have heard damage estimated at up to $200 billion. The media has covered this extensively prior to the time it reached Florida as well as during and now after it has passed on.

Prior to Irma, Hurricane Harvey his Texas and moved to Louisiana. The cost there appears to be between $100 and $200 billion. This was a big item in the news.

On numerous occasions, I have said something about these two storms to Kate. Usually, it has occurred when she has overhead something on TV and asked what had happened and/or “where was this?” Although we are some distance away from Irma’s path, the wind has been heavier than usual. It has been raining.

Despite all this, Kate has been unable to remember these two storms, not just their names but that they occurred and where. Today as I was pulling up to an ATM at our bank, the radio news mentioned the horrible damage left by Irma. Kate asked what they were talking about. I told her about the storms. She asked where they occurred.

I can’t sense that she is bothered in any way by this failure to remember. I think she has forgotten so much that she doesn’t recognize when I tell her that it is something I have told her before. It is a challenge for ordinary conversation, however. Her memory is so short that I am regularly having to repeat things that I have just said because she hasn’t remembered them. Fortunately, I am able to understand; therefore, I am not bothered by this. I can tell from reading the message boards that it does bother many other caregivers.

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Déjà vu

It has been a good while since I mentioned anything about Kate’s Deja vu experiences. I am only doing so now to indicate that they still continue. For example, as we sat at a stop light coming to Panera this morning, a man walked across the street in front of us. Kate said, “There he goes again.” She also continues to see people she “remembers” at the restaurants we frequent. I typically say, “So you’ve seen him/her/them before.”

Speaking of things that continue, Kate is still not swallowing her saliva, and I have not heard from her doctor’s office since I left an email message for the doctor. I have called the office and left a message for the doctor’s nurse. She called me about 3-4 weeks ago. I explained my attempts to contact the doctor. Two weeks ago, I sent a letter to the doctor who started her practice. In that letter I told him about the events that had transpired since the end of June. I have not heard from him or Kate’s doctor. Something is really wrong with respect to communication. I am only glad that it does not appear to be a significant problem. It was a year ago this fall that I first mentioned the problem to Kate’s original doctor who is no longer in the practice.

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The Sitter’s First Full Visit

I have often said that we worry about lots of things that never happen while we are surprised by things that we never anticipated. That certainly applies to the first full visit of our sitter for Kate.

Kate went outside about ten minutes before the sitter was to arrive at 1:00. I told her that I was going to the Y and asked if she remembered Brittany who came to our house the other day. She didn’t remember at all. I would have been surprised if she had. Then I told her that Brittany would be here while I was gone. Kate asked why she was coming. I told her what I had said before her visit on Wednesday. I told her that I was just feeling bad about leaving her alone when I go out. Then without any coaxing she said okay. I was thrilled. It was so much easier than I had expected. I had worried about something that didn’t happen. At the same time, I interpreted this as another indication of the progression of her illness. I told her I wanted to give her a hug before I left. I did so and told her I loved her. I held her tight and tears welled up in my eyes. We kissed. Then she went outside to her yard.

The sitter arrived a little late (1:06 instead of 1:00). I started to tell her that I was a stickler for time, but I decided not to make anything of it. I could just wait and see if it is a habit. Kate was working in a flower bed in the back yard. I thought that worked out well so that I could show Brittany around the house and tell her a little more about my expectations. I reminded her that Kate has no short-term memory and would not remember her. I also told her that I thought the most important thing she could do was to make friends with Kate, “just get acquainted with her and also let her know more about yourself.” I told her that Kate could stay outside as long as she likes but to keep an eye on her.

It was 1:30 before I left for the Y. I left there at 3:45 and went to a Panera store in a different location from the one we usually visit. I did so to buy a gift card for the sitter to use if they went there sometime while I was gone. It was almost 4:30 when I got home. Brittany was sitting in the family room watching TV. She told me Kate was still outside. I looked and noticed that she was in almost the same place as when I left. That is the longest Kate has spent outside since the spring when the weather was cooler. Today is one of the most pleasant days we have had.

I went to the bedroom to take my gym clothes out of the bag and put them in the clothes hamper. Then I went to the closet and opened my top drawer to return the Y membership card that I had taken out of the drawer right before I left for the Y. I noticed that the top drawer was in more disarray than usual. I can’t claim that it is usually or ever neat, but I know where things are and can see them pretty easily. At first, I wondered if I could have messed up the arrangement of things in the draw that much when I took the Y card out. Then I opened the top draw to the right of the one where I keep my keys, wallet, and some cards. When I opened that drawer, I immediately saw that the contents were very differently arranged than usual. I use a microfiber cloth to clean my glasses. I keep it on top of the other things. It is a good size cloth and covers almost the full width of the drawer. I could only see a trace of it under several envelopes and cards. It was obvious that someone had gone through the contents. The last time I opened the drawer was yesterday morning. I went into the family room where Brittany was watching TV. I asked if she was sure that Kate had not come inside while I was gone. She said she was. Then I asked if she could have gone into two of my dresser drawers. She said she hadn’t. I didn’t push it. I didn’t expect her to say she had. It was still about 15 minutes before time for her to leave. I told her she could go. Then I went back to the bedroom to see if there were any other unusual things. The only thing I noticed was that a top drawer to Kate’s dresser was pulled out slightly. I think Kate has completely forgotten about having anything in it, and I have never opened that drawer at all.

I can’t be sure that Brittany was the one who got into the dresser drawers. It is possible that Kate had done it. I just think that is very unlikely. I have known her to go into one of the other drawers that has socks in it, but not the top two drawers. Despite not being sure that Brittany did it, I just didn’t feel comfortable having her back again. I called the agency immediately. They apologized and jumped right on a replacement for Monday. They seemed very pleased with this person who has worked with them a while. They said that everyone has liked her, and the person for whom she had been carring had died and would probably be available on a permanent basis. I shall look forward to meeting her on Monday.

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More Signs of Change

Kate seemed unusually confused at lunch today. As we were waiting for our food, she pointed to several military from Fort Jackson which is very near where we live. Then she asked me the name of the base in Fort Worth. I told her that it is the Naval Air Station. .

After a quiet moment or two, I told her that tomorrow is Brian’s birthday. He is our oldest grandchild. She asked, “Who are his parents?” I told her that Kevin and Rachel are his parents. I mentioned that Brian is now 19 and how it didn’t seem that long ago that we had flown out to Texas when he was born. As we talked a little more, she asked, “Who are his parents again?”

She also asked me how long we had been married. I told her we had been married 54 years and that it would be 55 next May. We started talking about other things, and then she asked again how long we had been married. As I sat across from her and listened to her confusion, I felt a deep sense of sadness. There were moments when I fought to hold back the tears.

On the way home, she said she wanted to pull leaves. I told her I knew that was something she really liked to do. She acknowledged that and said, “Of course, when I start my two albums, that will keep me busy.” It is interesting that this comes up once in a while even though it has been about two years since she has done anything on them. At least she said “when I start” on my albums. She must recognize that she hasn’t been working on them.

When I pulled into the driveway, she asked if she could pull leaves. Then she asked about using clippers. After that she asked if she should wear a cap and where she should start. This is just a continuation of a pattern she has established over the past few weeks.

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How Am I Feeling?

I am discovering that successfully getting over a couple of hurdles doesn’t mean that the challenges are over. I am still feeling anxious even after last week’s visit with the nurse and Wednesday’s first visit with the sitter. Today is the first day that I plan to leave Kate with a new sitter who comes at 1:00. I plan to show her around the house and try to set the stage for both of them. I want Kate to be able to continue doing what she normally does at home, pull leaves, work on her iPad, or rest. Since Brittany will be there 4 hours, this will be a bigger challenge for Kate than she is accustomed to. When I am there for a 4-hour period, she might pull leaves for an hour, take a shower and change clothes, and then be ready to get out of the house. I may give Brittany $20 and ask her to take Kate to Panera if she would like to go. That could make it easier for Kate, not only in breaking up the day but also gaining a better comfort level being with Brittany.

Until now, I had always thought that Kate might be especially resistant to being at Panera with a caregiver, but she seems less bothered by things than in the past. The positives could outweigh the negative.

I have tried to analyze why I am feeling so anxious which is not a characteristic of my personality. I believe there are two things that account for it. First, I have worked hard and have derived pleasure out of trying to make Kate’s life run as smoothly as possible. I believe I have done a good job of that, and it is difficult for me to believe that a stranger can come in and be as attentive. In connection with that, I don’t want Kate to experience any difficulty knowing that a stranger is now there to handle things I would have done. In other words, I feel anxious simply with leaving her in the hands of somebody else and also about Kate’s reaction to my leaving.

The second thing that is affecting me is the more ominous one of being a sign of a bigger change in our lives. I have tried to spend as much time as I could with her since her diagnosis while at the same time maintaining many of the activities that also give me a sense of fulfillment. Now Kate is forgetting lots of things that were significant to her in the past. Just this week, she asked me where our son lives. I told her Lubbock, and she gave her usual response, “I knew that.” She really does, but those things slip away so easily now. She followed that by confusing it with Knoxville.

This is to say I feel her slipping away more clearly now than in the past. There are almost daily incidences that let me know just how far along she is. In the past, I have wanted to take advantage of every moment with her. Now those moments become even more precious, but I am facing the reality that there isn’t anything I can do to stop this progress/decline. The only thing I can do is to try to hang on to each remaining aspect of our relationship; therefore, leaving her with someone else for 4 hours a day 3 days a week is tough.

To be truthful, whether or not I have a caregiver for Kate does not change her prognosis. I know that she will still slip away regardless of what I do. I believe I have maintained a very rational outlook toward Kate’s illness. That has carried me a long way. As the readers of this journal know, I have had periodic low points in the past. The one I feel now is not unexpected, and I believe it is appropriate. I am not going to wallow in it, but I can’t deny it either. I would be horribly dishonest if I did. Above all, I have wanted this to be an account of our real experiences and not a work of fiction. At least to me, the reality of our situation has never been more vivid, and I know it will only get worse.