When Kate was diagnosed seven years ago, I did not expect that we would be as active as we are today. That is not because her condition has not changed since then. It has changed considerably. I don’t think I have always captured the changes as well as I might have. In preparation for creating this blog, I have re-read every entry posted in the Archives and have been surprised at how much of my description of Kate’s symptoms seem to be the same as they are today. For the most part, I believe that relates to what I would say is the lack of precision in the words I have used. For example, early on I made many references to problems with her short-term memory (STM). Today, I am saying the same thing; however, the changes between then and now are dramatic. If I had been able to use a mathematical scale (like doctors use when they ask patients the level of pain they are experiencing) instead of words, I might have been using numbers like 6, 7, or 8 where higher numbers indicate better STM. Today I would use numbers like 2 or 3 to reflect her STM.
To give you a better idea of what I mean, yesterday she asked me to tell her my name. I told her. She said she knew that. Then I asked her to tell me my middle name. She couldn’t do it. I told her. Less than a minute later, she could not recall it.
Her long-term memory (LTM) was still pretty good at the time of her diagnosis. It has gradually gotten worse over time. As far back as 3-4 years, I was aware that she was slipping on details about family events that had been important to her. Until the past six months or so, she talked a lot about her mother and her family. She is not doing that now. I think it is because they are fading from her memory. When I mention them to her, she responds very generally that conveys she remembers these past events. She does not say anything else about them.
In recent weeks, she has more frequently asked me to tell her names of people (including our children, grandchildren, and me). She also asks me to tell her “where we are.” Sometimes she is asking the name of the restaurant in which we are eating. More often she means, “What city are we in?” While at Panera two times this past week, she asked, “Does this place have a name?” As we were leaving Panera this morning, she asked, “Where are we?” I told her. Then she asked, “What state is it in?” These questions represent significant changes from even last year.
If I had known these symptoms seven years ago, I might have underestimated how much we can still enjoy ourselves. It saddens me to know how little memory she has now. At the same time, I am encouraged by the pleasure we get out of life. Tonight is Opera Night at Casa Bella. We will sit with the same people we have sat with the entire four or five years we have been going. Kate doesn’t remember their names and couldn’t tell you anything about them if you asked. On the other hand, she will feel comfortable with them even if she doesn’t say much. On top of that, she will love the music. How grateful I am for that. I know that, too, will change, but I am optimistic that will be a while.
