So what’s it like after 2 years?

A week and a day ago marked two years since Kate’s diagnosis. I recall at that time how hard it was to fight back the tears when I heard the word. Since that time I have continued to wonder what things will be like in the next year. Or the year following. Or the year after that. Although I have continued to report the deterioration in her condition, she continues to get along well in many ways. I still believe that virtually no one suspects her AD. It is possible that Ellen may suspect, but Kate has never mentioned that possibility. The only person she has thought might suspect is her hairdresser and that because she has missed so many appointments. Now she gives me all her appointments (if she and I remember to do so). We both put them down on our calendars (our phone calendars).

The biggest toll is the one on Kate. She is regularly frustrated because of her inability to do even simple things. Last night she was frustrated over her Facebook page(s). Inadvertently, she created a new FB account. We hadn’t figured out how to delete the account, and I hadn’t taken the time to do so. I simply set it up so that the correct account was the default. For some unknown reason she has been able to get into the old account. I redid things that week, but she got back into the old account yesterday and requested a bunch of new friends who accepted. I suspect these were already friends on her “real” FB page. At any rate, she was frustrated and discouraged last night and said, “”I just can’t do anything anymore.” This is not far from the truth. My biggest concern in this respect is that she continues to get herself in situations that she may have difficulty getting out of. The neighborhood directory is a case in point. She is now working on being a volunteer tutor for a local high school. It is terrific that she wants to do these things, but she won’t be able to do them long or at all. Then she will feel frustrated.

I don’t say much about this, but I am watching her and my Dad go through the same journey. They both are quite similar in wanting me to go slowly with them. Neither one can process information quickly. Dad can’t follow long emails or videos. Kate is having a hard time following movies. It is common for her to leave a movie saying that she got so confused and that I will have to explain it to her. Sometimes the movie really is difficult to follow, but mostly it is her difficulty in following and understanding.

I want to repeat something that I have said a number of times before. Our relationship has been stronger than ever. My own attitude toward her is, I believe, the key difference. I have made a commitment to spend more time with her and to be patient with her. With respect to patience, I do not always meet my own expectations. I believe that is because she is so normal in most ways that I respond to her as though she is normal. When I stop to consider that all of the things that cause me to be impatient are not her fault at all but a function of her AD, I am able to understand. Ironically, then, I believe I will be more patient as she continues her decline. I feel the same way about Dad. I should add that Dad is further along on his journey, but there are many similarities between the two of them.

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