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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.

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Get-Acquainted Visit with a Sitter

I can breathe a little easier, at least for the moment. The get-acquainted meeting went well, at least in terms of Kate’s response to the sitter. I did not tell Kate that anyone was coming. When I saw the sitter drive into the driveway, I went out to greet her. I asked if she had been briefed on the fact that Kate didn’t know about my making arrangements for a sitter. She had. I brought her inside and asked her to take a seat in the family room and went to get Kate who was on her iPad in her room. I told her we had company. She didn’t ask any questions or look surprised. She just put on her shoes, got up, and walked with me into the family room.

I introduced them. Kate asked Brittany to take a seat and then took a seat across from her. Kate very quickly assumed the role of hostess. She asked Brittany if she were from Knoxville. It turns out that she moved here from New York about ten years ago when her mother was stationed at Houston Army Base in Kingston.  In a few minutes, there was a slight lull during which time I jumped in with a question or two. We learned that she is 24, has a 20-month-old boy, and that her mother and at least two siblings live in Knoxville.

After that, I asked Kate if she could tell Brittany about our meeting and courtship. She hesitated, and I asked if she could remember where we first met. She did. That led into a discussion of our first and second dates, our courtship, and the role of the funeral home where I was working at the time.
From there we had a little back and forth of our telling about our lives and family and her telling us more about herself. When it looked like we might be running out of steam, I asked Kate if she could tell Brittany about the kinds of things she does with her time. At first, it looked like she would not be able to think of anything. I thought she might mention the yard. What she said was that she was working on photo albums. She started describing what they are like. One of the albums that she and her brother had created about her mother’s family was sitting on the coffee table in front of me. I picked it up and handed it to Kate and said, “You could show her this.” When Kate opened up and started to show her what the book was like, she pointed out a picture of her mother with her mother and father and sister. Brittany commented on how much Kate looked like her mother. It didn’t take long for Kate to become engrossed in the album.

Since they seemed engaged, I decided to step out of the room while Kate showed her the album. I went into the kitchen and got something to drink and to work on a letter I wanted to send to someone at church. Kate was really enjoying the album and being able to share it with someone.

I didn’t stay away long, maybe ten minutes. I went back into the family room where they were seated. It had been about an hour and twenty minutes since Brittany had arrived. I decided we had learned enough on this visit. Before closing the visit, I said, “Kate, you haven’t told her about how much you enjoy working jigsaw puzzles on your iPad and your pulling leaves outside.” I thought it would be good for Brittany to know that because there could be plenty of times that Kate would want to pull leaves or use her iPad while she is here. After that, I thanked Bri for coming and said, “We’ll look forward to seeing you again.” Kate and I escorted her to the door and told her good-bye.

After closing the front door, Kate turned and gave me a puzzled look and asked, “What was that all about?” I said, “Well, we were interviewing her. Do you remember how I have told you that I really hate to leave you alone when I need to go someplace? I thought it might be nice if I had someone who could stay here while I am gone?” She asked, “How did you know her?” I told her that I didn’t, that this was my first time to meet her. Then she asked how I found her. I told her about the woman from agency we had met at Panera 2-3 weeks ago and that she had told me about her. Kate seemed to accept that and didn’t ask any more questions. She didn’t look disgruntled in any way. She said she wanted to get something to drink and then go outside. She got her drink, but she never went outside. I guess she forgot. She went back to her room to work on her iPad. She is still working there even though it has been almost an hour and a half since the sitter left.

Earlier I mentioned that the visit went well, at least from the way Kate responded. That begs for a little more explanation. That has to do with my own reaction to Brittany. She is an attractive young women, but I had hoped for someone that might be a little more (maybe a lot more) extroverted. She wasn’t quick to engage in conversation. Kate did a good job initiating conversation, but there is only so far that she can go. I am glad that I was here to fill in the blank spaces in the conversation, not just by my own comments but through questions or prompts for both Brittany and Kate.

During the visit and since, I have considered that a more introverted personality might not be a bad thing. I know that Kate would tire of someone who talks a lot. That is great for a short time, but big talkers wear her down. I know, she often asks me not to talk.

My plan is to let the agency send her again on Friday and see how that goes. She is supposed to stay for four hours. I plan to go to the Y during that time. That should be a better test for how they get along. I am going to encourage Kate to feel free to either work on her iPad or work in the yard. I will convey the same thing to Brittany.

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A Surprising Positive (?) Change

Much earlier in Kate’s journey, I commented on the fact that she didn’t ever put up her clothes. I have pictures showing clothes stacked on the bed in her office, on the floor, and in two of the guest rooms. This continued for a very long time. I am glad to report that she is considerably better about hanging up her clothes now than in the past. That doesn’t usually happen at night when she changes into her night clothes. At that particular time, she almost always throws her clothes on the floor or the chair beside the bed along with her shoes and socks. Sometimes she picks them up in the morning or later in the day. Other times I get to them first. Over the past two-three years, I have made a point to try to pick up her clothes wherever I find them and put them back in her closet. But I don’t want to take away from the fact that she is actually working hard to keep things straight.

I don’t really know how to account for the change. I consider it positive for two reasons. One is that it makes it a lot easier for both of us to find the clothes she wants to wear. Secondly, I think it is good for her to have a responsibility, something to do besides working jigsaw puzzles and pulling leaves. On the negative side, I also imagine that she is struggling to fight the more natural tendencies of her Alzheimer’s. I see it in moments when she tries to figure out how to put on a night gown or a top. On occasion, I offer my help. She almost always turns me down. These are among those moments when I feel so sad for her. I know it takes an effort for me to face a losing battle trying to prevent or solve problems she has. I can’t imagine how it feels to have them myself.

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A Twist on a New Pattern

I have commented several times about Kate’s having developed a habit of asking my permission to pull leaves, specific parts of the yard in which she can work, and to use her clippers. Today, she opted for another variation of this. As we got near the house, she asked, “What can I not do?” She was asking about pulling leaves. I told her that would be fine. She asked, “Where?” I told her anywhere. Then she said, “Clippers?” When I told her that was all right, she asked one final question. She just held up her cup. She was asking if she could take it with her to the yard. I said yes, and she looked amazed.

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Taking Stock: How am I feeling?

I tend to think that how I am doing/feeling comes through my posts without my explicitly speaking to that point. Once in a while, however, I feel the need to address the issue head on. This is one of those times.

Considering everything, I still believe I am doing well. Although I experience the many frustrations that accompany this illness, I don’t feel worn down in anyway. The most significant emotion I feel is sadness. I don’t see how anyone can watch his spouse gradually lose all (and I mean all) of her abilities to function. Recently, as I have become increasingly reluctant to leave Kate alone, I have felt torn about engaging someone to be with her when I need to go out. For a long time I have wondered how I would know when that time was right. As it turns out, the kinds of changes that I have described in my recent posts have led me to feel now is the time. Intellectually, I am not having a problem with that. Emotionally, it is more difficult to accept.

Two related issues account for this feeling. One is how I can introduce this to Kate without making her feel bad. From everything she says, I believe she doesn’t realize just how far she is into this journey. I certainly don’t think she feels the need for someone to stay with her. On the other hand, as I have noted earlier, she also seems more accepting of whatever I plan for her. My explanation is that she is so tuned out of things going on around her that she doesn’t really understand and just accepts what happens. I was quite concerned about how she would respond to the nurse who came to our house yesterday. Even though I told her that the nurse was coming in connection with her Alzheimer’s diagnosis and the nurse asked a lot of questions she would not be used to answering, she never got suspicious or upset about why the nurse had come or what was to follow. She just seems to have lost her ability to process these events. That is definitely true about other things.

Now that the nurse’s interview is over, I wonder how she will respond to her first meeting with a sitter this coming Wednesday. I am generally optimistic because of yesterday’s experience with the nurse and also her previous meeting about 10 days ago with the social worker from the agency that I have engaged to provide a sitter. At the same time, I am still a bit uneasy and will be glad to have this first encounter behind us.

The second issue that concerns me is the implications of bringing in a sitter for me. It has now been 6 ½ years since Kate’s diagnosis. I have devoted myself to her throughout that time. This is something I was glad to do. We have both derived pleasure from the many things we have done. Throughout this time, I have gradually had to make changes in my own life to meet her wants and needs; however, I have wanted to do this and have never felt that I have sacrificed my life for hers.

Introducing a sitter is a sign of a real change in our relationship. Whereas she has depended on me in the past, she will come to increasingly depend on others. This represents a loss to me not just in my no longer being able to do as many things for her but also the beginning of the loss of our normal marital relationship. Life together is never going to be the same again.

Of course, the changes started long ago even before her diagnosis. Right now, however, I see a clearer departure from the earlier days. We are now entering a period that is what most people think of when they hear the word Alzheimer’s. I have heard and read about the caregivers of Alzheimer’s patients grieving the loss of a spouse or other loved one before their actual death. That is what this feels like to me. This feeling is not brand new. I have always loved music and have found it to be especially comforting since her diagnosis. I have never been one to pay much attention to the lyrics of songs, but the lyrics of some songs have caught my attention and have had a different meaning than the songs themselves then intended by the writer. I can think of two examples. The first is “If I Should Lose My Way, Please Wait for Me.” I can’t hear this without thinking of Kate’s literally and figuratively losing her way in the depths of Alzheimer’s. Recently, I heard another one called “Losing You.” The phrase “I’ll never get over losing you” spoke to me in way that I would never have noticed before.

I don’t mean to exaggerate this feeling of sadness, but I wouldn’t be honest if I didn’t acknowledge it. It seems to characterize my response to Kate’s disease than what I hear from many other caregivers. That is a major reason I say that we have been very fortunate. We still have not had to endure some of the worst aspects of Alzheimer’s. It makes me much more sympathetic for those who do.