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Fifty-First Anniversary

Tomorrow we will celebrate our 51st anniversary. We hadn’t planned to do is anything special, but earlier this week I decided it might be nice to drive to Asheville. I got ticket to a play. I have also made lunch reservations at a restaurant that we like. We’ll return tomorrow night.

Today we had lunch with Mark and Katherine Harrington. I had told Mark about Kate’s Alzheimer’s a few weeks ago and couldn’t help but wonder if he noticed anything different about her. I could believe not. The one thing that I think is different is that she speaks more boldly and confidently and more than she used to do. She also interrupts others speaking more frequently than in the past. It is quite difficultl for me to express precisely what this difference is, but it seems like she is working harder to make herself heard. There is also a bit of child-like enthusiasm for lots of things.

One of my problems lately is adjusting to her wearing some of my clothes while she is working in the yard. In particular she wears some of my tee shirts. Once they have gotten dirty, the stains don’t come out of them. This is one of those situations I have to be careful about. I have chosen not to say anything because she gets defensive or she jumps on me for being so compulsive and overly concerned about my property.

She is working hard to be on time and sometimes senses pressure from me when I haven’t done anything at all. That happened today when I came home a little early for our lunch with the Harringtons. I did this because I feared she would still be working out in the yard if I came home just in time for us to leave. At any rate, she ended up feeling pressure to get ready quickly. I hadn’t done anything to rush her because I thought we had plenty of time. At one point, she told me that it wouldn’t hurt the Harringtons if we were five minutes late. As it turns out we were on time, but she needled me because she thought I was getting fidgety over her not being ready. I confess that frequently I do get fidgety. This wasn’t one of those times.

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Email to Jesse and Kevin

Dear Jesse and Kevin,

 I wanted to let you know a couple of things. First, Mom received a surprise recognition at church today. Presbyterian Women gave her a life membership in their organization for her almost 20 years of service as the volunteer librarian. She was surprised and delighted. As you know she committed a large part of her life to the church library. It might be nice if you gave her a call or sent her an email congratulating her. I was a little concerned about having to create some creative story so that she would go to this luncheon. You probably would not know this, but she has never been involved with Presbyterian Women or one of the church circles. This may have been the first time she attended one of their luncheons. At any rate, it turned out to be rather easy to get her there. I simply said, “I wanted you to know that you are going to get a call from someone at church inviting you to the next luncheon sponsored by Presbyterian Women, and I think you should go.” I thought she would ask why. She never questioned it at all; so I didn’t have to resort to making up a story. The exception is that the person who called her talked with me and told me to tell her that she would bring her home if I would take her. What your mother didn’t know was that I had been invited to be present for the award; so I brought her home.

Second, is that two weeks ago today she told Ellen about her diagnosis. This is the first time she has told anyone. I don’t know what prompted her to do it at that time, but it came after several days of significant frustration over having to rush to find the right clothes and get herself ready for several events. It is interesting that for the first time I mentioned it to two of my friends, Tom and Stan, with whom I carry on a daily email correspondence. I suspect we were both feeling that the situation is getting worse and felt it was time to tell our closest friends. She, of course, does not know that I had already told Ellen a couple of weeks earlier and that I told Tom and Stan. Neither does she know that you are aware. She told Ellen that she wanted to be the one to tell you. She doesn’t, however, believe it is time for you to know. As I mentioned before, she does not realize how far along she is. She does clearly recognize that her condition is worsening all the time.

I am planning our summer as though this may be the last summer that we have the grandchildren for a visit or a trip. I would never say that to your mom. She is still looking forward to taking the twins and Taylor to New York. It is hard for me to envision doing this next summer. I still don’t think it is time to tell the children. Although they will begin to notice signs in the future, I suspect they could be with her now without realizing. Our trip to Lubbock this Friday and the following 5 days will be something of a test in that respect.

We are eagerly looking forward to a grand summer.

Love,

Dad

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Growing Weary?

We’ve had two really good days at Chautauqua, ones that remind us why we like coming here. I have the impression that Kate feels this even more than I. On the other hand, tonight I observed  a behavior that I have seen before and that is a desire to simply relax and not attempt to do everything. That occurred this evening when we were at dinner here at the Kevin Hotel. She suggested that she thought I might be thinking the same thing that she was thinking. She didn’t say what it was, but I thought (correctly it turns out) that she did not want to go to the evening performance in the amphitheater but simply relax at the hotel. After dinner she asked if we couldn’t go out on the porch off our room and have a glass of wine. I said that would be fine, and I meant it. As it turns out, I had already decided that we would skip all or part of the evening performance. I thought that she did not know what the program was because we had not discussed it, but I now recall that our afternoon speaker, Justice Anthony Kennedy, had said that he was here for his granddaughter’ dance performance this evening. This notwithstanding I thought it was unusual that she just wanted to stay in tonight. This is something we have rarely done in all the previous times we have been here.

The reason I even mention it is that I observe that Kate more frequently wants to retreat from social engagement than in the past. Of course, this could be something else. On the other hand, when I observe things like this, I always think of the possibility that it is related to Alzheimer’s. Perhaps this is another good reason that I think she is correct in not wanting others to know of her diagnosis. If they knew, they might be looking at everything as a function of Alzheimer’s.

One thing I do know is that she has handled herself well socially. Tonight at dinner she was able to engage in conversation with those at the table with no difficulty at all. She was especially cordial to two Japanese guests that arrived today from Tokyo. We have also spent time with a couple from Tom. They have also introduced us to some of their friends, and Kate has handled the situations normally.

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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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Our 50th Anniversary

This past Friday we celebrated our 50th anniversary. I spent most of the day with Kate, and we went out to dinner that evening. This entire week we have reflected on the things we have experienced together. Our relationship continues to be special. Although it has always been good, it has taken on a different nature since Kate’s diagnosis. As I expressed before, I wish that I had been able to respond to her before the diagnosis the way I have since. I have been significantly more understanding and , thus, accepting. Many little things that annoyed me before (for example, the way she loads the dishwasher) I simply accept now.

This is also to underscore that many of the things that I attribute to Alzheimer’s are things that were manifest earlier. They are just significantly worse now. One example would be the fact that when she opens a pack of sugar substitute, she leaves it on the counter rather than putting it in the trash which is immediately below where she dropped it.

I continue to observe that she accepts her dependence on me. She wants me to help her with most of her tasks (PEO, neighborhood, calls to people, etc.). I acknowledge that this puts some degree of stress on me, but it is quite manageable right now. I know the future will be different. Adding to this is care for Dad. He celebrates his 100th birthday on Oct. 19. We begin to act as though he will live forever. While I know this is not so, he could live long enough to complicate my care for both of them. I suspect, however, that it will work out. By that I mean that he will pass away before Kate reaches a point at which she requires constant attention.

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Special Moments Followed by Melancholy

A week ago this past Friday we went to a 5:30 movie (Anna Jesseina) and then to Casa Bella dinner. Everything was perfect. We got our usual dinner, splitting a Veal Piccata, a bottle of wine and white chocolate cheese cake for dessert. Every part of the meal was great as well as our conversation. All of this is to say that we continue to have many special moments – I suspect more than most couples.

For some reason the next day I was feeling kind of melancholy. In the car I listened to music that has been special to us. That would include a song from the movie, Same Time Next Year and another from the television series, ”Family Ties.” It was hard to keep my mind off of the fact that the special times we have together are limited and grow fewer each day. Mind you, it wasn’t that Kate did something to remind me of this; it was simply the joy of good times together that made me think of the limited time we have.

This past week we went to Lubbock to be with Kevin’s family for Christmas. This was a special time. During the trip there were reminders of Kate’s decline in memory. For example, she indicated she wanted to go to the Astrodome. I decided that the easiest way to work that into our schedule would be for us to do it on Friday morning, the day we were leaving. Each day, however, she would ask about going to the Astrodome, and I would tell her we would do it on Friday. On Thursday night, we said our good-byes to Kevin and his family after dinner at the Macaroni Grill. It was clear that the reason for doing so was that we would not see them the next morning. When she got up Friday morning, she worked on the computer for a while, and I mentioned that we would want to leave on the early side to get to the Astrodome. She took her shower, dressed, and got ready to leave; however, she hadn’t packed her things. When I mentioned this, she asked if we were leaving today. I told her yes; so despite numerous mentions of when we were returning and her writing it on her calendar, she still did not remember that this is the day we were to return.

Looking on the bright side once again, it is good that it is the short-term memories that are the biggest problem because most of our functioning depends on longer-term memory. This would not be true if she were in a position of responsibility either as a volunteer at the library or if she were still working in the school system. I am even beginning to be concerned about some of her volunteer work with PEO and our neighborhood association.

Another interesting side-effect of her Alzheimer’s is that she looks more kindly on most people. She is more complimentary of me than at any point in our marriage. She often talks about how bright I am. She says similar things about other people. I think this is because so many things are difficult for her that she is impressed when she sees others doing what she cannot do.

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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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Some Positive and Negative Aspects of AD

Last night we returned from Fort Worth where we attended the 50th reunion of our 1962 graduating class at TCU.  We had a wonderful time. Clearly time had not erased the connections we had with our good friends from those days. For Kate the really good thing was that this kind of situation relies on long-term memory which, for her, is still good. That meant she was able to comfortably converse with people and enjoy them.

This made me stop and think how fortunate it is that it is the short-term memory that goes first because much of our interaction with people depends more heavily on our long-term memory. Before going, Nancy Hardwick (a childhood friend of Kate’s and also a friend at TCU) had sent us an email letting us know that Charlie, her husband (who was a former roommate of mine), was having memory problems and that we should always copy her on any emails to Charlie because he doesn’t remember things too well. As it turns out, if she had not mentioned this to us, we would never have known he had a problem.

These experiences underscore what I have mentioned a number of times before – the person with AD and his/her spouse recognize the condition long before others do. Although Kate got along beautifully as far as her relationship with the people with whom she interacted, I know that she had any number of experiences of forgetfulness that are painful to her. Her memory continues to worsen, and she recognizes it.

Not to take away from the stress for her, but it is also a challenge for me. Because she is so normal in most ways, I continue to respond to her in the same way that I have always done. For example, we had talked during the weekend about going to Sadie’s Cafe for breakfast on Monday morning before leaving. On Sunday night we talked about going there the next morning and returning to the hotel to finish packing. Right after she woke up on Monday morning, I told her I thought we might get ready to go to breakfast at 8:00 and the come back to the hotel to finish packing. I assumed that she remembered our plans for Sadie’s Cafe. When she was taking more time to finish packing, I said I thought we should go and reminded her that we were coming back to finish before leaving. She had forgotten that we were coming back to the room. She thought we were leaving for the airport in Dallas.

When we went downstairs, she walked in the direction of the hotel’s restaurant as I walked toward the door to go out to the car. She looked puzzled, and I reminded her that we were going to Sadie’s. She had completely forgotten.

When something like this happens, I recognize that I should know by now that she can’t remember. What I should do is assume that she won’t remember and say something tactful that gives her the information again without saying, “Remember, we are . . .” or responding after the fact, “I told you . . .” or “Don’t you remember?” All of these things hurt her self-confidence and bother her. I need to do a better job saying the right things instead of the wrong things.

During the weekend there were quite a number of incidents that she forgot about after my telling her something we would be doing at a particular time. She frequently asks me what day it is and then asks again later. This is one of the things she has in common with Dad.

The good thing is that I am the one who will see these things and not others. Hopefully, she will be able to hide her AD from the world for a while longer.

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Dad’s 99th Birthday

This past Saturday we had Dad’s 99th birthday party at our house. We had a total of 58 people on a beautiful, sunny day. Kate and I both had a feeling of relief yesterday. She was absolutely worn out. We both went to bed around 8:30. Besides the weather’s being great,  everyone seemed to enjoy the party, especially Dad.

We did quite a lot in preparation for the party. We painted the outside of the house, had some electrical work done, got a new rug for the family room, bought a new love seat for the family room, cleaned up the garage, did more than the usual cleaning of the house, and Kate did a lot of work outside with her plants. All of these things needed to be done anyway. The party was just a catalyst to do them now. Of course, they don’t include all the things directly related to the party like invitations printed and mailed, selection of a caterer and menu, decisions about handling the crowd outside, inside, and what to do if it rains, etc. I don’t like managing details, and event planning is far from my strength. With all this done I can now focus on other things for a while.

Kate’s AD had quite an impact on me during the preparations and during the weekend, but I don’t think anyone else would have been aware of her condition at all. There are things that came up that could have potentially alerted someone, but to my knowledge nothing gave her away. One time she came to me as we were preparing to serve dinner to the family Saturday evening after the party. She took me aside and whispered in my ear, “Where do we keep the wine glasses?” I got them for her, and no one knew.

I was aware that the preparations put her under a lot of stress. I felt a lot of stress myself, but it must be double or triple that for her because of insecurity that comes from her inability to think clearly and to remember the many details required to pull off something like this. One of the things that was troublesome to me was her focus on her plants and landscaping when I felt we should be focusing on more basic things like the cleanliness of the house. I also felt the load was completely on my shoulders. She gets flustered by making decisions, and thankfully, defers to me for most things. That meant that she did precious little to manage any of the little things like meals for our family. I do wonder if people notice this. She has just bowed out of the routine things she would have done in the past.

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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.