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Several good days

I often post things that are not working or the negative changes in Kate’s condition. That doesn’t reflect the many good times and experiences that we are sharing. The past few days have been especially good ones. It began on Saturday when we drove to Nashville for a visit with long-time friends, Scott and Jan Greeley. Kate’s mother was pregnant with Kate at same time that Scott’s mother was pregnant with him. He and his wife are very special friends. We were there for lunch, an afternoon of conversation, and dinner before heading back home.

On Friday, I received a text from a church acquaintance, Cindi, who asked if Kate might like to join her on Sunday afternoon for a performance of the Living Christmas Tree at a local church. Knowing that Kate would not remember Cindi, I asked that she come by on Friday to re-connect and invite Kate. She did so. She is a delightful person, and Kate readily accepted her invitation. Cindi picked her up and took her. Kate was very enthusiastic when she came home. She loved the show and loved being with Cindi.

Just before Kate left with Cindi, I got a phone call from Laura Williams, an old high school friend of Kate’s. I told her that Kate was just getting ready to leave and asked her to call back when she returned which she did. They had a nice 30-minute conversation.

That evening when we went to dinner and returned home, Kate was the most upbeat that I have observed in some time. It was good to see. Something seemed to carry over through yesterday. I observed virtually no sign of irritation with me over my efforts to control her. On the contrary, she seemed especially conscious of ways in which I help her. Last night before she got into bed, she told me how much she needs me. When I thanked her, she said, “No, I mean it. Do you really know how much I need you?” I got up from my chair and walked over to her and put my arms around her. I told her how much I loved her and said, “I want to help you. I want you to be able to count on me.” We embraced for a moment without saying a word. Sometimes words aren’t necessary.

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Sweet and Bitter in NYC

This is Sunday morning, and we have been in New York City since 9:15 Wednesday morning. I just got back from a nice walk around the neighborhood on the upper Eastside near Bloomingdale’s. Kate is still sleeping soundly. I am going to take a few minutes to collect my thoughts on the past few days.

The first thing to say (and the reason I put “sweet” before “bitter” in the heading for today’s post) is that we have had a marvelous time. It is everything I had hoped. This is the first of a series of things we will do to celebrate our upcoming 50th anniversary (May 31, 2013). I chose New York City because it is the place we have visited far more often than any other place, we love it, and Christmas in NYC is very special. Besides that we had our first date on December 19, 1961, got engaged on December 19, 1962 (50 years ago this month). Our first date was a performance of Handel’s Messiah. Tuesday night we will attend a performance of Messiah at St. Thomas Episcopal Church on Fifth Avenue. We both love the theater; so we have also attended My Name is Asher Lev, Newsies, The Book of Mormon, Un Ballo in Maschera at The Metropolitan Opera, and Once. We may attempt another show this afternoon; however, I am tempted to pass some time in our neighborhood. It is a wonderful area, and we have not spent sufficient time here. Of course, we don’‘t leave until late afternoon on Wednesday; so we might do that another time.

Now for the bitter. Although we have had a great time, we are both noticing Kate’s deterioration. At lunch a couple of days ago, she said, “”I would love to come back to New York with Jesse, but I don’t think I could do it again. She would have to take charge.” I said something about the wonderful memories of previous trips. It was a sad moment for both of us. In addition, at each show she asks me to explain things. It is very hard for her to follow the complexities of the stories. Yesterday at the opera, she asked me to explain what had happened after each act. She said she simply couldn’t follow things. I said it must be like there are so many stimuli coming in that she doesn’t know what to focus on. She said that was “exactly it.”

Because of her condition, for the first time I haven’t considered leaving her anyplace to browse and then meet her later. This is something we have frequently done in the past. We have both stuck close together at all times. There have been at least 2 occasions when we have gotten separated momentarily. One of those was going into Macy’s.

In addition, she gets confused on instructions. For example, last night while waiting in line to enter the theater, a theater employee asked us to move down to another line. For some reason Kate thought we were supposed to enter at a different place; so she simply went ahead of people who had been waiting in line. She also has trouble going through the turnstiles at the subway.

All these little things notwithstanding, we are having a wonderful time. It makes me glad that I decided to go all out for our 50th anniversary because things will deteriorate from here. Next year she will be less able to enjoy these things.

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Great Fourth of July

I realize the last entry was on the negative side. In fact, we had just had a great 4th of July together. We didn’t have any plans at all. I got up early, had breakfast, and took an hour’s walk. Then I had a cup of tea and took care of some email. After that Kate wanted some help with trimming some of the shrubs she had a hard time reaching. We worked together for about an hour. Then I took a swim. She finished a short time later, and she got in the pool as well. Following our short swim, we decided to have some leftovers for lunch. I mentioned that Bernie was playing, so we went to the 1:30 movie. When the movie was over, we came home, and I went to visit Dad. We enjoyed the pool and a glass of wine when I returned. This was the first time I felt like being retired would be a good thing.

Spending money

Although we live well, we have never lived beyond our means. The exception would be when I was starting my business. We borrowed money to undertake that adventure. We continue not to spend more than we make, but this year has been different. We are spending more, and my intent is to spend even more in the next year. The reason? I feel that we need to do as many things together as we can before time runs out. This coming week we are going to New York with our oldest grandson, Brian. We are doing it up right by staying at the Marriott Marquis, attending the Cirque du Soleil, Spiderman, and Blue Man Group. I have already booked a B&B in New York for a week in December for a special trip that I am considering the first part of our 50th anniversary celebration. On top of that I am going to book a trip to the Galapagos for February or March, 2013.

What is early stage of AD like?

This is a stage when the disease is mostly hidden from other people; however, to someone like me, it seems more obvious. The major problem is day-to-day functioning. For example, Kate has worked on a half-page letter of reference for a young mother who is a candidate for a PEO scholarship for more than a week. She has revised and revised it. I signed off on it several days ago, and discovered that she had never sent it and was revising it again. Two months in a row she has forgotten her monthly PEO meeting until someone called the night before. In fact, I just went into the bedroom to wake her up so that she would have plenty of time to get ready for PEO, and she had forgotten about the meeting. Of course, it is likely that she would have remembered it after getting up, but it would also be common for her to have forgotten completely. Two days ago she lost her purse with all her credit cards and ID, and we are scheduled to make a trip to NY on Tuesday. Right now I am assuming we will use her passport as ID. (Note added at 10:03 am. Kate found her purse at 9:30 this morning. It was beside her chair in our bedroom where she often works on her computer. She is quite relieved.) Her personal possessions are continuously being misplaced. She is less able to do the simplest things on the computer. All of these things frustrate her tremendously although we don’t talk about it. We just exchange knowing glances when things happen and I find myself often giving her a hug.

More than ever in our married lives, she feels she really needs me. When I come home from visiting Dad each evening around 6:00, she often looks miffed that I have been gone so long. Then she will often say, “I am glad you are home.” This is not said in any routine way. It is a genuine expression of her insecurity and need for my presence. She also feels she needs me to take care of things for her.

She gets along beautifully with friends. They really wouldn’t know unless she asks a question about something they have just talked about. Even that is something that doesn’t normally tip the off since all of us do that sort of thing occasionally.

She can’t follow instructions or any explanation of things nor is she able to give instructions. She will quickly stop me when I start to explain something. With others, she will simply “listen” and not process what they are saying. She frequently asks me to make calls for her, for example, to her doctor’s office to get a prescription refill or almost anything she can pass off to me.

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Back from Chautauqua

Yesterday afternoon we arrived back home from Chautauqua. We had a terrific stay at The Spencer and have already reserved the same room for next summer. Kate got along well and enjoyed herself immensely.

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Good Times

I have been reflecting lately on the nature of my comments and decided I ought to be more thoughtful about frequency, topics, and relevance to my musings. We’ll see where that takes us. The first sign of this is the title for today’s entry. Here’s the story,  and it’s short.

Right now we are at the peak of the spring flowers, and the weather lately has been grand. One of the things that Kate and I have enjoyed over the years is sitting outside on the patio with a glass of wine and just conversing. Last evening was one of those times. I had come back from my daily visit with Dad at Mountain Valley and began to prepare some chicken soup with some chicken thighs that I had cooked over the weekend. Kate was planting some new flowers on the neighbor’s side of our front yard. She came in just about the time I was ready to serve; so we took our soup and wine outside and enjoyed the view, the weather, the conversation, and just being together. These are moments we treasure, and, fortunately, we have many such moments even in the midst of some of the trials that we have faced. We enjoyed these long before we knew about Kate’s AD.

My spirits have been higher in the past few days which relates to the successful closing on the building, the exploration of new properties to buy with the proceeds, the good feeling that the staff has about our move upstairs, and the fact that we have had a number of new business possibilities. All these things remind us of how much we have to be thankful for.

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Talking About the Future

Last night we had a fire and some wine and talked a good while. We didn’t specifically focus on Kate’s AD, but it is an unspoken part of all our conversations and time together. As I mentioned in an earlier post, she is worried that she is further along than either of us would like. We talked last night about our plans for the May trip to Edinburgh and next January’s trip to Africa. When I mentioned the Africa trip, she said, “If I am able to make it.” I told her I couldn’t envision that her condition would deteriorate that quickly, and that we would have quite a number of trips before she would be unable to travel. I wasn’t just saying that to comfort her; I really believe it. At the same time, I tend to feel that she is well into AD. We discussed the fact that this is the toughest challenge we have faced. We tried to reassure each other that we would do this together the way we have done everything else. I didn’t say this, but I believe we will do this better than anything else we have done together. We feel intensely close. The fact that we will keep this secret for as long as it seems possible demands that we hold each other up. Earlier yesterday she told me that the social worker at her doctor’s office had returned her call, and they were going to schedule a time to get together. She had been in some counseling with Jean a few years ago and believes it might be helpful for her to get together with her again.

We both have a variety of reactions to knowing. One for me is that I want to be with her as much as I can and that while we are together, I try to make the most of our moments together. The second thing is that I do not find myself frustrated at all with the kinds of behavior that I now see as symptoms of AD. I seem to be able to accept anything she does. I also find myself trying to reassure her when she does something that could be viewed as a symptom of AD. For example, today at lunch, she didn’t get the top of her plastic glass screwed on straight. I told her that it is hard to get it screwed on just right and that I make the same mistake. She said, “”You don’t have to try to make me feel better. I know it really is hard to do.” At lunch, Kate mentioned that she had thought of 2 people at church that she felt she would be able to talk with. She indicated that she wouldn’t do this any time soon however. The implication was that she would wait until we were more public about her AD.

I continue to feel moments of sadness. These come when I am not distracted by activities that require my attention. We took a walk around the neighborhood this morning, and I couldn’t help thinking of how much she had wanted a house like ours and that I could never walk these streets alone without feeling a great deal of sadness that she wasn’t with me. I have found my mind drifting to the travel we have done and the experiences we have had together and the fact that we won’t be traveling as long as I had expected. I fully expected to do so into our 80s. Now I feel she may be gone, or incapacitated, before she is 80.

Kate is now at yoga. She is trying to get there several times a week. I am encouraging her. She likes the instructors and finds yoga relaxing and good for her physically. We now have her medicine in the bathroom off the master bedroom. That is so that I can check to see that she has taken her medicine. This was her idea, not mine. She has a tendency to forget to take it. This is not a particular problem except for her antidepressant. She suffers nausea if she misses a day.

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A Short Getaway to Asheville

We seem to be settling in a somewhat normal life after the rush of emotions and related conversation. I don’t mean to suggest that we won’t continue to have our ups and downs but to point out that the week has gone pretty well. I had a presentation near Asheville, so I took Kate with me. She shopped while I was doing my presentation. When I finished, we had dinner at a nice restaurant. It was a great meal. She had had lunch at a seafood restaurant where she enjoyed the scallops she loves so much. We came back to the hotel and got to bed early. We stayed once again at the Haywood Park Hotel where we have stayed the last 7 or 8 times we have been to Asheville.  We love it and think of it as our second home. In fact, Kate mentioned (in jest) that when she needs more care she wants us to move there because it is so nice.

The next day we took a walk in the downtown area near our hotel. Before returning to Nashville, we had lunch at a new place a friend had told us about. It was fantastic. We will return there.

Kate has gotten started in yoga this week. She is going this afternoon for the third time, I believe. She enjoys it, and it is something she should be able to do for a long time (a long time being undefined). I tend to think, but would not say to her, that she is farther along than we want to believe. I suspect we won’t be able to keep this secret for more than 2-3 years, perhaps less.

 

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Follow Up to Yesterday’s Post

I don’t intend to write something every day, but I did want to add a couple of things from yesterday and today. First, I didn’t indicate yesterday that I had planned to take the full day off as soon as I knew Kate had the appointment with Dr. Reasoner. That worked out well. After our lunch at Casa Bella, we came home. We had picked up Kate’s laptop from the shop; so she wanted to catch up on email, etc., having been without the computer for the past few days. I took a little time to work on my Sunday school lesson and to start this particular document.

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