I woke up this morning with a sense of new knowledge that I need to accept the people in my family the way they are in regard to my sister with PSP. I want her husband and children to act differently toward her. I want them to clearly be angry at PSP and not at her for having it. But, do I really "know best" what they really feel or believe or how they should act? Maybe my response to my sister's PSP is to put demands on others that they change and be more like me--grieving openly and trying to fix things. My new sense is that I need to be more patient and accept that the place where the family is right now is where they are and it's OK. They are in a sort of emotional safety zone--I am not in that zone. Seeming indifference is a protection from pain. The 16-year-old asks me why I cry so much--she does not see her mom's condition as a big deal or understand why it should affect my life. I think she says this to protect herself from reality. I was in a similar emotional safety zone early on in my sister's illness, three years ago when no one knew what was wrong. I was angry and feeling impatient that she was not well and I was judging that it was her own fault. I also felt she was shutting me out and giving up on life. In the past year I moved into the compassion zone and since May of this year I moved into the fighting zone, actively trying to get answers from her MDs for her illness. Since her PSP diagnosis in August, I am in the raw pain zone and wanting to fix things zone. I cry every day. I want counseling in their home for the family. I have to let go of my prescriptions for their life though. This is the new realization I woke up with today. When it is time for them to act differently, then they will.
Last edited by Pagesofwords
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