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Sydney

We are at the end of our month-long trip to New Zealand and Sydney. We have had a wonderful time. It was everything I had wanted it to be. My decision to do this trip on our own was a wise one. It was also good that we planned to do it leisurely and not worry about trying to do everything.

I have had my hands full on the trip. It is especially hard to maintain any order. For example, when we arrived at a location, she would pull her clothes out of her suitcase and throw them on the floor. I am sure she was looking for something specific, but it makes it difficult to find things later on if they are scattered about the room.

Going through check-ins is a bit of a problem. She generally does not understand what she is supposed to do even when I give an explanation. When we were going through customs in Auckland, one person was supposed to walk through a screening device while the person behind waited behind a white line painted on the floor. I went through first to show her what to do. Instead of stopping at the line, she followed right behind me. This messed up my screening; so I had to go back and do it again.  After I got through the line, it turned out that she didn’t understand what she needed to do. We had to stop at a point while the scanner did a scan of our faces. She couldn’t get this right. There was no way for me to go back and help her. I had to get a customs official to go around and help her.

Something similar happened when we were taking a train someplace. She put ticket in the slot and then tried to walk through a different turnstile. These are little things, but it creates a lot for one person to handle. This is the kind of thing I had never thought about before. I am sure I will get used to it.

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Ups and Downs and Special Moments

The past few days Dad has had his ups and downs. This past Friday, he called Larry and me. He sounded coherent, but he said he didn’t know where he was. As usual, I assured him he was at Mountain Valley and that I would be there in the afternoon. He said he was all right. He seemed quite lucid at dinner. I had a good visit.

Yesterday when I arrived, he was up and in his wheel chair but sleeping. He woke up right away when I spoke to him. Before going to the dining room we went back to his room where I put a couple of bananas in his top drawer. Then he needed to go to the bathroom. He asked me if the birthday party was still on. I told him it was and asked why he asked. He said, he thought it supposed to have happened but didn’t. I told him we had 3 weeks to go. He also said something about how good it was to see me and that I hadn’t been out all week. I told him I had been there every day. He said he couldn’t remember my being there. I joked with him that he was giving me an easy out now. I could come only once a week and he wouldn’t know the difference.

I brought him a couple of hot dogs and some yogurt. He ate it all and enjoyed it. As we sat together, I told him that we might consider my interviewing him at his party so that he didn’t have to try to remember any prepared remarks. He seemed to like that, and I started a trial interview. He repeated what a good life he has had. We talked a little about the ups and downs of life. I asked him what the most difficult time of his life had been. He thought a moment and said, “I guess when my father left us.” I said, “Tell me more about that.” He said, “Well, I guess I was ashamed.” This is the very first time I have ever heard him say anything this self-revelatory. I have long suspected that he was hurt by his father’s departure from the family and knew that he had explored trying to find him when I was about 12 years old.

I asked him about any school teachers that he recalled. That led to his mentioning somebody in his junior high school who had taken an interest in him. He said it was in the 8th grade that he developed a personality. He went on to say that he thought his personality throughout his adult life and today was shaped by those days in the 8th grade.

As we talked he asked me, “Do you think I’m getting senile?” I said, “no, I wouldn’t say that. I would say that your stroke has affected your brain and that makes you confused sometimes and causes you to have some delusions.” Then he said, “I’m not ashamed of my dementia.” I told him there was no reason to be ashamed, that many people suffered from dementia.

Our conversation went on perhaps a total of 40 minutes or so before we went back to his room. We both felt good. He commented again on how glad he was that I had come out. When I tucked him into bed, he thanked me again and told me that I had taken good care of him. I told him we had done it together. He said, “Well, you’ve done three-fourths of it.” I told him, “We have walked a long way on this road, and we’ll walk the rest of the way together.” I left feeling very good.

Last night around 10:30, he called and asked if I were coming to pick him up. He thought it was time for the party. I reminded him that we have 3 more weeks. Then he asked, “Is Elizabeth here?” Elizabeth is an Eastern Star friend who is driving up from Gainesville, Florida, for the party. So he continues to show more confusion than is normal for him. Once again, I think this is going to become common in the days ahead. I am thankful for the special moments like yesterday afternoon and will try to remember them rather than the down times.

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Good times

Last night we had dinner at Emilia. It was a nice evening. We had a good meal, and a man we know from church played the piano. The night before I had reviewed our itinerary and lodging for our trip to New Zealand in February. We both got excited about this trip. I finally decided to travel on our own and travel by car within the country. I think this will work out much better than having to meet a schedule for a group as we would have done with OAT.

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Great Family Time

Late Saturday night Kate and I returned from Jackson Hole, Wyoming, where we had rented a house to celebrate our 50th anniversary with our children and grandchildren. Everyone was able to be there which is a very rare event. In fact, this is the first time all of us have been together for a full week. I am glad to report that it went swimmingly well – at least from our standpoint. I also believe the others had a great time as well.

I thought that Kate got along well. I suspect that no one may have been suspicious about her Alzheimers. She is more withdrawn than she used to be and did not pretend to help in the kitchen which could have been a clue. I guess I will find out when the day finally comes that we make it known to them. It would not surprise me that when that happens they will have already been suspicious.

This has made me reflect once again on the timing of telling them. From Kate’s standpoint, she would just as soon never tell. They would simply come to realize it the way I did with my mother. On the other hand, I has meant that I have been able to take advantage of our time together. I wouldn’t give anything for this time. We have been very conscious and deliberate about making the most of our time. The interesting thing is that despite Kate’s own frustrations over having AD, she thinks she will have more time than I believe she will have.

By the way, she commented on how caring Jesse and Greg were during the week. She wondered if I might not have told them. I told her that I hadn’t said a word. I think they were responding to the nature of the hiking trails we were on. We all noticed that she is less stable. They also know that she is geographically challenged.

Kate was quite careful to ask me for help when she needed something. For example, she didn’t know where any of the kitchen utensils were kept; so when she fixed her cereal in the morning she needed help identifying the right drawer. She asked me discretely, and I don’t think anyone noticed.

One reason I don’t think people noticed is that no one has said anything to me. If they know, surely they would say something to me.

I will write more later when I have a moment. I want to comment on the grandchildren and the letters I had for her.

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Things For Which I Am Thankful

I realize that much of my conversation may have a negative tone to it and want to present the other side for a change. It’s not that something especially good has happened to us in the last day or two but that overall we have much for which we are grateful. Perhaps I was prompted by a conversation I had with our banker the other day. I initiated steps to become power of attorney for Kate’s financial accounts and explained to the banker that she has AD. Last week I spoke with him for the first time in 6 months or more. He asked how we were doing. I told him that all-in-all we were doing quite well. Then I explained that one of the benefits of knowing early about her AD enabled us to place more emphasis on our relationship and making the most of the time we have together. Even with the natural frustrations that I experience with Kate’s inability to do or remember things, I have become decidedly more patient and understanding. That has made all the difference in our relationship. Even though we have had a strong relationship in the past, it is at its strongest now.

Beyond this, we are not under the financial pressures that might prevent our doing many of the things we enjoy. In addition, her diagnosis came at a time when I am able to take time away from my business and invest more personal time Kate.

When we consider everything, we are incredibly blessed, and we recognize it.

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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.