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.
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.
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.
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.
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.
Kate was up early again this morning and ready for Panera. She is not in a good mood. She is depressed. As usual, she won’t talk about it at all. She just shrugs her shoulders when I ask what is wrong, how I can help, etc. We spent an hour and a half at Panera before she wanted to come home. She is in bed resting. I am going to get her up in a few minutes to take her to lunch.
I have also bought tickets to a movie at 3:00 this afternoon. This is a movie she told me Friday she didn’t want to see. I am going to try it anyway as a diversion, a way to get her someplace other than home or Panera or one of our restaurants.
Coupled with her boredom this week has been more irritability than usual. In fact, I have observed what I take to be less humor in responding to me and a more genuine expression of irritation with me.
I can’t recall a week during which she has been this way before. I must admit to being discouraged this moment. I am hoping she bounces back soon but also worried that I am seeing signs of a further transition.
Both the morning worship service and the morning lecture were emotional for both of us. Father Boyle, our preacher of the week, is a story teller. His sermons are filled with various stories from his work with gangs in LA. Each one is used to reinforce a point. This morning’s sermon topic dealt with living in the moment. He made great use of the word “now” in his message. The message and the stories touched me deeply in that I know this is our last stay at Chautauqua and also that we have been living in the moment (at least trying to) since Kate’s diagnosis. I had tears in my eyes most of the time he was speaking. I don’t know that Kate shed any tears, but she was touched as well. Her expressions were audible ones. Those have become quite common over the past few years
I never thought the lecture itself would be an emotional experience. Perhaps I should have expected it since I knew that music was involved. The first thing that brought tears was Jane Pauley’s singing of “The Way We Were.” When she appeared on stage on Monday, Roger had said she was going to sing today, but she denied it. Apparently, she was having second thoughts knowing that the audience would no doubt have some talented musicians among them. The lyrics were written by Marilyn and Alan Bergman. She was ill and couldn’t be there, but her husband was a delightful person, and their relationship was itself a touching story. He sang parts of a number of their songs and explained how they came to be. The last portion of the “lecture” Bergman sat on a stool beside the piano and sang to of his songs. The last one was one that he and his wife and written for each other. When it ended, even the moderator said that was a fitting end and did not ask for Q&A, a unique occurrence indeed. I noticed a man to my right on the row in front of him wiping his eyes. The woman next to me saw me wiping my eyes. The man directly in front of her had turned around and noticed my tears. I then told the woman next to me that I was especially emotional because my wife has Alzheimer’s and this is our last trip to Chautauqua. She told me her husband died of Alzheimer’s. She wished me well. I gave her a hug. Then Kate and I reflected on the beautiful morning we had had.
Last night we were going out to eat. As I was getting ready, I thought about Kate’s new clothes that we bought several months ago and that she has not been wearing. (I think she simply doesn’t remember she has them.) I called to her and went to her bathroom where she was starting to get ready. When I called she answered with irritation. She wanted to know what I wanted. Before I could begin to explain, I could see that she was breathing more heavily than normal and appeared stressed. She went on to say she just wanted to be ready on time and that she was having to work so hard to please me. She walked away from me. I spoke to her in a gentle voice so as not to further aggravate her and told her that I was just thinking she might want to see if her new clothes would be something she would want to wear. Then I left to get ready myself. When she had dressed, it turns out that she found a new dress and jacket. She looked great. She was also in a good humor.
This experience was the most striking example of the stress she experiences when we are going places. It was more than just a panic attack this time. It was almost as if she were frightened of me as if I was going to abuse her. This frightened me. The last thing I want is for her to think of me as her master. I will write more later to explain that earlier in the day we had had an experience buying more plants in which I had been bothered, and she picked up on it.
This morning I had a long phone conversation about Kate with Scott and Jan. This was a follow up to my conversation with Scott on Wednesday afternoon. They indicated they had suspected something after our April visit. They couldn’t put their fingers on it, but something was different. On Wednesday all they could point to was a slight hesitation in responding to questions. They were very supportive and wanted to know how she responded to our visit. I told them it had been her therapy and mine as well. I also suggested we get together as often as we are able. We decided to get back together after they return from Africa and we return from our cruise in October.
Yesterday at the dentist, I told my dentist. His mother has Alzheimer’s but is further along than Kate. He asked if he could tell his dad (my former dentist) and indicated that he would be glad to talk with me if I were interested. So that brings the number of people who definitely know through me to our pastor, Virginia and Ken, one of the secretaries at church, our children, a couple we met at Chautauqua, my staff, the Greeleys, and my dentist. I also suspect that some or all of Kate’s PEO sisters know.
So how am I feeling about letting the cat out of the bag with more people? I have experienced a little guilt because I feel I have betrayed Kate. On the other hand, it has been a relief to me to share this secret that I have been holding back for so long. My guilt is relieved by the recognition that in the long run Kate will find herself in a situation in which everyone around her knows about her Alzheimer’s, but she doesn’t know they know. What I have feared is that she will learn that I have told someone and that she will be hurt by it.
Yesterday Kate and I went to Nashville for a visit with Scott and Jan Greeley. We had a really good day. Kate and I love being with them. For Kate, the relationship with Scott is probably the longest-standing one she has. Their mothers were pregnant at the same time and remained friends thereafter.
I considered calling Scott and Jan to let them know about Kate’s Alzheimer’s but didn’t. In fact, I had considered doing so immediately following their last visit with us this past April but never did. Late yesterday afternoon Scott rode in the car with me to a Japanese restaurant while Kate rode with Jan. It was only a few minutes to the restaurant, and Scott asked how we were getting along health wise. I told him I had to hit him so abruptly, but that “Kate has Alzheimer’s.” He asked a couple of the usual questions like “How long?” “Have you considered any support groups?” I told him what I could in a short time. When we left the restaurant I told him I would like to call him to follow up on our conversation. He said to call when Jan would be available. This morning I sent an email asking when would be a good time. We set up tomorrow morning after I get to the office following my trip to the Y.
Today I had a routine dental appointment. His father was my dentist until his retirement 5-7 years ago. I always ask about him and his wife. After getting an update I told the dentist that Kate has Alzheimer’s and that we are several years behind his parents on this journey. He encouraged me to call his father and was going to tell his dad about Kate. That means I have added quite a number of people to the list of those who know about Kate. What I see is a natural process in which more people become aware of our situation. It isn’t something that I planned some time ago. It is just unfolding as I have felt the need or a situation presented itself.
Kate went to her monthly PEO meeting this morning. I am wondering if I should say something to them. As I have noted earlier, I suspect they know already. At least two members of the club have said something to me that suggests they know. If they know, I have to believe the rest of the club knows. At any rate, all of this signals a time period in which we are moving into a more serious stage of the disease. I still remain optimistic that we have many good experiences ahead. Yet I am l also facing the reality that the good times are growing shorter. That adds a measure of anxiety for me.