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Adapting (?) to Having a Sitter

When my dad was caring for my mother who had dementia, I tried to get to get him to use a sitter when he needed to get out. He was always resistant, but he finally agreed to a short trial to see how he liked it. He didn’t like it and didn’t stick with it long enough to become comfortable with the arrangement. Now that I have had a sitter for Kate almost six months, I have a better understanding of his feelings.

That doesn’t mean that I am going to give up the sitter. It only means that I have not fully adapted to it just yet. Having cared for Kate for the past seven years, it is not easy to turn over some of that responsibility to someone else. Kate seems to have adapted much more easily than I have. Despite that, I feel a slight uneasiness just before the sitter arrives. I begin to wonder if Kate will be as accepting this time as in the past.

That has not been a problem. The past two times, however, she has not been as enthusiastic as she has been before. Thus, I wasn’t as comfortable when I left her today. Typically, when I leave, I tell her that I am going to the Y and will see her later. She usually says, “What am I going to do?” My answer is that she and the sitter can do whatever they like. I suggest that she could work outside, go to Panera, or stay inside and work on her jigsaw puzzles on her iPad. Until today, she has jumped at the mention of Panera. Today, she just took a seat with her iPad. When I returned home four hours later, that is where she was, still working her jigsaw puzzles.

After the sitter left, she looked bored. That didn’t surprise me. I would have been bored if I had been working jigsaw puzzles for four hours. It does, however, play into my apprehension about leaving her with a sitter. She often thanks the sitter and tells her goodbye when she leaves. She didn’t do that today.

I think I’ll approach this the way I do most things that come up. I’ll wait to see if this was just a bad day for Kate. Maybe when the sitter comes on Monday, she will be in a different frame of mind. Regardless, I am sure I will be uneasy when Monday arrives.

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When Kate is happy, I am happy.

Periodically, I like to reflect on how I feel about Kate, our relationship, and the way things are going. The fact that it has been seven years since her diagnosis prompts me to do that now. The medical community uses a one to ten scale for patients to indicate their pain level. If I were to apply this scale to my feelings about the way things are going, I would probably say an 8. Kate and I are both in good moods right now. Both her mood and her state with respect to her Alzheimer’s influence my mood significantly. She has been in a particularly good mood for some time now. If that were the only factor in my mood, I would have said a 10. The fact that I notice more and more symptoms of her decline brings the rating down a couple of points.

During the past seven years, Kate has experienced more irritability than before. That was concentrated over a fairly lengthy period of time. The good thing is that it was neither intense nor constant. It was mild and relatively infrequent. I am never sure how much her behavior is influenced by mine, but I have made some changes over the couple of years or so that could have played a role in her showing less irritability.

In the past, we have often engaged in humorous banter that originally worked to lessen the seriousness of emerging problems. Kate has always recognized my OCD tendencies. As a result of my gradually taking charge of so many aspects of her life, she would tease me about how “anal” I am. I always responded light-heartedly in a way that encouraged her expressions of concern about my desire to keep her clothes clean, to see that she wore her yard clothes when she worked outside, to suggest that she change when I saw that what she was wearing was inappropriate for an event we were attending, and lots of other things .

I think this served us well for quite a while. Over time, however, her teasing seemed to display a more serious tone. I decided not to encourage this kind of banter any longer. I also made some important behavioral changes. I eased up significantly on what she wears. For the most part, I let her wear whatever she wants when she is working outside. I have also tried to be clever when she is about to wear something outside that really concerns me. For example, I bought her a new winter coat for everyday wear. When she was about to wear it to do her yard work, I told her I had something that would be even better for her. I told her it was a good warm coat. She accepted that. I bought a couple of pairs of new shoes and keep them in my closet. I bring them out for her whenever I think she should wear something a little nicer than the ones she wears every day. In the evening or the morning before she is up, I locate them and put them back in my closet. I do the same with her pants.

One other change is that I increased our conversation about our relationship. I encouraged talking about how long we have been married and emphasized all of the good things we have experienced over that time. None of this was something we had not done before. The difference was talking about it more with a deliberate attempt to facilitate good feelings about our relationship. For example, on occasions when she needs help getting her clothes on, she usually thanks me. Instead of casually saying, “You’re welcome. Glad to help,” I might look at her and very deliberately say, “I’m glad to do it. You know we’re really a team.” I’ve emphasized the fact that we are doing these things together. She has responded well to the idea of our being partners in everything. I, of course, see this as being partners in her Alzheimer’s. I don’t believe she thinks of that at all. I believe she looks at it as simply the kind of partnership that makes for a good marriage. She’s right, of course, but I also see a special connection to her diagnosis that she no longer sees.

I am not saying that my changes have made the difference in her happiness. That may only be a part. Kate has declined during this time period and become more dependent. Thus she is more accepting of my help in just about every area of her life. I do believe, however, that these changes have meant fewer bases for conflict, especially over clothes. It has also fostered more happy moments. We both like that.

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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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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.

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Application for In-home Care

Today I took another step in the process of securing in-home care for Kate. At the moment, all we need is for someone to be here with her when I have to be gone. In particular, I have become uncomfortable leaving her in the early morning so that I can get to the Y. I plan to change my pattern and go in the afternoon. The plan calls for us to have someone here Monday from Noon to 4:00 and on Wednesday and Friday from 1:00 to 5:00.

With the changes that Kate is making I feel like making these preparations is appropriate. At the same time, I am becoming uneasy about breaking the news to her. Many times I have felt that the anticipation of problems is often greater than the actuality. I hope this will be the case. We are supposed to start next Wednesday. Our son will be here on Saturday, September 9. For that reason the following Monday and Wednesday, I have asked that they agency not send anyone.

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How am I Feeling?

Observing Kate’s decline over the past few months and finally taking steps to get in-home care for her has left me feeling a bit sad. It also makes me think about what other caregivers have said about “grieving” for their loved one long before their death. I can see (feel) exactly what they mean. Recognizing the need for in-home care is not really the beginning. For much of the time since her diagnosis, I have come to understand that our lives together have been permanently changed. As all my entries in this journal convey, that hasn’t meant that we have not enjoyed life. I still maintain that these years have been the best of our marriage. That is because we have worked hard to make the most of the changes. We have lived to make each moment special. The reality is that our lives have changed continuously since the first signs of her illness 11 years ago.

Reaching the point of in-home care is a significant one symbolically. It signals a time when the severity of her illness requires more help. Although we will begin with minimal help, that is our first step toward full-time care. In the meantime, I plan to continue doing as much as we can socially. We will continue to go to Panera each morning. We will continue lunch with local friends. We will also visit our friends in Nashville. This Sunday we are going to Asheville for a show at one of their local theaters. Once again, we will stay at the Haywood Park Hotel, our home in Asheville since they opened. We have season tickets to the Bijou in Knoxville. We will try the Live in HD at The Met productions. I am a little guarded about those. We walked out at the first intermission of the last one.

That said, I can’t forget that we are approaching that chapter of Kate’s illness that I have not wanted to face. I am at a weak point emotionally, but I know that we will be able to cope with what lies ahead even if it is through lenses covered with tears.

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More Signs of Decline

It’s too early to be sure, but it appears to me that Kate is going through one of those sharp declines I have heard other people talk about. I just hope this does not signal something more drastic than what I have observed this week.

Tonight we had dinner at Naples, a local Italian at which we eat once a week. I order chicken Parmesan for Kate one week and lasagna the next. Tonight it was the Parmesan. Right after we got in the car, she said, “They make a good pizza.” We’ve only ordered a pizza there one other time, and that was the first or second time we ate there about two years ago.

Before coming back to our bedroom this evening, Kate called from the kitchen. She wanted to know how to turn off the kitchen light over the island. This is the primary switch we use all the time. When I showed her the switch, she said, “I thought it was there; just didn’t know which switch.” In fairness, there are at least 6 switches, but this is the first time I have ever known of her confusion.

As usual, I feel sad for her and anxious for myself. I know that she doesn’t show any signs of frustration, but I still feel sad to see her losing so much of her ability to do everyday things. I feel anxiety thinking about how I will adjust to the future. I know I will adapt, but I fear the future right now.

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Feeling Sad, Anxious

Kate’s confusion related to pulling leaves from the neighbor’s shrub as well as a number of other things have caused me to believe she may be on a more serious decline than in the past. On my agenda today is a phone call to one of the agencies with which I spoke a month or so ago. I am going to let them know that we are coming closer to using their services. I also plan to ask them what they have learned about transitioning to in-home care for those patients who don’t believe they are ready for it.

I also need to call Transamerica again regarding the completion of their application. First, I am going to review the application as though I were filling it out. I am bound to notice things that are not clear. I will jot those down before making my call. I also want to make sure of whether or not there is a requirement that we go through an agency as opposed to hiring caregivers directly.

This is ironic that I should be feeling the last stage of this disease closing in on us just as we are about to embark on new relationships with two couples
The good thing is that Kate doesn’t seem to be affected emotionally by what is going on. She still feels quite normal and happy though as some other caregivers have noted her happiness is flatter. I get sparks of the former Kate when we go to Opera Thursday and Broadway Night at Casa Bella.

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Travel Report Chautauqua 2017

Today was our last day at Chautauqua. It was probably our last time here together. That thought has saddened me deeply today. At various times during the day (sitting on the porch for breakfast and checking email, walking the brick walk to and from the Hall of Philosophy, having lunch at La Familia and dinner at the Afterwards Cafe) I have thought, “This is the last time we will experience this together.”

Even with the sadness, I believe that I made the right decision to come this year and to leave after only one week. Today was another good day for us, but Kate was worn out last night. She was in bed at or before 9:00 last night and didn’t get up until about 11:00 this morning. Not only that but between lunch and the 2:00 lecture, she went back to bed. I had to get her up to attend the lecture. She would have preferred staying in bed but got up anyway, something that she has been doing for the past 6-12 months. Prior to that, it was very difficult to get her up. She gets up much more quickly now.

Returning from the 2:00 lecture at the Hall of Philosophy, she walked even more slowly than usual. We stopped by the apartment for a short time and then went to see the play “Noises Off.” Again, she walked very slowly to and from the play. She seemed to enjoy the play despite the fact that it is a farce. She generally doesn’t like that type of humor. This is something we have seen three other times. She enjoyed it each of those times.

It is almost impossible for me to imagine coming back with her if she declines as much in the upcoming year as this past year. There would be problems on multiple fronts. Just the travel itself would be trying. I know that it would be difficult for her to enjoy herself once we are on the grounds. That would affect my enjoyment as well. I would need to have help to take care of her. That can be arranged here. My contact at the Chautauqua Foundation has indicated that she could help in that regard. At the moment, I feel that it would be best not to come at all. It may be that it would work out for me during the following year although everything depends on Kate. It is simply too early to be planning anything too specific.

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My Emotions

I like to think that I am getting along pretty well, and I really am. However, I try to be honest with myself and with others that I am not unemotional in my response to Kate’s AD. We are at Panera right now. We came in through a side door rather than the main entrance that is almost directly in front of the counter where you place your order. For that reason, I generally assume that no one sees us coming in.

As usual, I came in, picked out our regular table, arranged it so that Kate would be positioned with minimal glare on her iPad, put here iPad at her place, and then went to the counter to order. I was surprised that before I could order, the person behind the counter said she had my blueberry muffin. I said, “I can’t believe you saw me come in. Who saw me?” Two people’s hands went up.”
When I got back to the table with Kate’s muffin, I thought a moment. One of the young women who raised her hand is Kelcie. She is leaving this Saturday to go back to Idaho where her husband is an undergrad at Brigham Young University. She and others have been so very nice to us. I decided I should go back and express my appreciation. She was talking with three others behind the counter. Each of them was there when I ordered. I asked Kelcie if she knew that Kate has AD. She did not, but said she knew something was not right. I told her and the others with her that I like for people to know just in case something unusual were to happen. Then I said, “I just wanted you to know how much we appreciate how nice you have been to her and to me.” Without the slightest warning, tears welled up in my eyes, and I choked up so that I could hardly get the words out.

I am a naturally tender kind of person; so choking up is not unheard of for me. I am touched by lots of things like movies, plays, funerals, and music. This happened to me when the doctor first told us about Kate’s diagnosis. It happened when I told my staff about her. After living with this for so long now, I don’t have this kind of experience very often. When I do it is typically when I am alone or in an audience. For that reason, I was surprised when this happened. It caught me off guard.

This is a personal reminder of how sensitive I am. That’s probably a good thing.