It was one month ago today that we met with Dr. Reasoner and received Kate’s diagnosis. The world for us changed in that moment. Everything we do now is interpreted in light of that. Many times I have been in a Sunday school class or other conversation when someone has asked what you would do if you knew you had ”X” amount of time to live. I recognize that Kate’s situation is not exactly the same. We don’t really know how long it will be until her death, and we don’t know how long she will be able to live a mostly normal life. It is hard to articulate what I mean by “mostly normal life.” I think I mean at least 2 things: (1) that she will be able to continue enjoying life in the same way that she does now – going to movies, the theater, out to eat, driving a car, spending time with friends, etc., and (2) that though some people might think she is a little spacey, they wont know that she has AD. I use the terms spacey because she has often said that the people at her beauty shop think of her that way. Over the past few years, she has occasionally forgotten to come to her appointments or left things at the shop. I suspect that Ellen, her best friend, has observed more than a little bit of this. At the moment, I doubt that she suspects AD.
As I think my earlier posts suggest, not all, nor even most, of our moments have been overshadowed by sadness. I do believe that Kate’s response has been in keeping with what you would expect from her depression she has experienced over a long period of time. She finds it hard to do the things she doesn’t want to do. She has busied herself in little things around the house like cleaning out drawers and closets. On the other hand, she has taken the positive step of attending yoga pretty regularly. Each day she tells me if she has a class the next day and what time it meets. I make sure that I set the alarm clock so that she doesn’t oversleep if it is a morning class. She also is working to avoid things that frustrate her. We talk about these things, and she is relying on me more as a partner in this effort than in the past. This blends with her adjustment to depression. Because she knows I tend to be more optimistic and upbeat (overly so she would be quick to say), she tries not to drag me down with her depression. She has suffered mostly in silence for many, many years. Now we seem to be operating as partners in adapting to her condition.
My own reaction has been anxiety. I fear, not her death, but her gradual incapacitation that will terminate our plans for many shared experiences in the future – celebrating our grandchildren’s maturity, graduation from high school, going to college, taking jobs, raising families of their own but also our own private time together – drinking wine by the fireside, lounging by the pool in the summer, travel to many places, theater trips to New York and so many other things.
My anxiety over losing these experiences has led me to try to be with her as much as I can. We eat lunch together a lot now. I am more sensitive about how long I stay with my dad each day. She always felt I spent more time with Dad when she would like me to spend more time with her. I am only now interpreting some of her recent concern about this as a symptom of AD. For example, on one occasion recently she sent me a text while I was visiting Dad. She wanted to know where I was and when I was coming home. When I got home, I learned that she thought that I had been gone all afternoon. In reality I had been gone about two hours, my normal time to drive there, spend time with him, and drive back home.
Another change in my behavior is loss of any frustration over her forgetfulness and other symptoms of the disease. Until yesterday, I had not experienced the first sign of irritation or frustration since before the diagnosis. Even yesterday was minor. On Wednesday, Dad’s brother and his wife as well as my brother are coming for a 4-day visit. The primary objective is to work on Dad’s condo – sorting through his things to determine what needs to be disposed of and what should be kept. This is a first step in putting the condo on the market. At any rate, Kate and I were discussing plans for the visit and trying to work out meals. I could tell she was getting frustrated. That led to my feeling a sense of frustration. The key difference from the past is that I might have pushed a little, and we both would have felt bad. This time I backed off and suggested we’ll get it worked out.
Last night she was trying to determine if she could host a women’s club meeting at the house in July or August. When I told her the August date would be right after we returned from Chautauqua, she asked if I were still planning for us to go for the week on Iran. I felt irritated because we had decided together while we were at Chautauqua last summer that that was the week we would go and put a deposit down on the inn where we have wanted to stay in the past. Now it is really late to make changes. Again, instead of pushing it, I told her that I would see if we could make a change if she really wants to do so, but we had put down a deposit long ago. She, too, decided to back away, and we left it that we would keep the week we had planned on.
The other thing I would say is that our relationship has been the best I can ever recall. Of course, I know I am forgetting the courtship, our new beginning in Madison and in Raleigh where our children were born. I find myself simply going over to her and giving her a big hug. We have eaten out a lot over the years but are doing so more now. Last week we didn’t eat a single meal at home. When I went to take the garbage out to the street for pickup today, I noticed there was no garbage in the container.
We had a wonderful night out at one of our favorite places on Saturday night. We had a cocktail in the lounge and talked for about 30 minutes and then went to the dining room for our meal. We talked about many things. Some of the things involve AD and her reaction. For example, we had a brief discussion about planning our funerals. We agreed this was something we would do together.
But it isn’t only the special nights out like Saturday. I feel even having soup and a sandwich at an ordinary place is a special moment together. We both frequently comment to the other about how nice the meal has been when we really don’t mean the meal at all. We mean that moment in time when we really connected. During the past month we have had many of those moments, and I trust they will continue.
This Wednesday, Kate goes back to Dr. Taylor, the psychologist, as a follow-up to her test of last week. On March 2, we go back to Dr. Reasoner. We anticipate that she will give us more information on the PET scan as well as Dr. Taylor’s evaluation.