Another way I tried to conjure up patience was to attempt to see the big picture: Is it really a tragedy if we’ re five minutes late for church?
One other was to tell myself in stressful moments,“ This is unpleasant, but it’ s not intolerable. I can do this.”
It is hard for caregivers not to become frustrated by their frustrations. But we’ re better off when we accept that we’ re going to be frustrated— often— and just see it as part of life right now.
I said I would give all caregivers the gift of patience if I could. Alas, I cannot. Instead, I’ ll just say that nothing I’ ve written here is to suggest you beat yourself up every time you lose your patience. We’ re all human and can only do our best. Please save some of your patience for yourself.
II. A Carepartner’ s Comments to the October 23, 2009, Chicago CurePSP Conference
Chris de Brauw
A retired marketing research professional, living in Evanston, Illinois
I am the husband and primary caregiver of Ann de Brauw. In December 2007, almost two years ago, Dr. Simuni diagnosed Ann with PSP. To the best of Ann’ s and my knowledge, the onset of symptoms was in the middle of 2004. Altogether, we have been with the disease for about five years. Recent developments indicate, and were confirmed yesterday by Dr. Simuni, that Ann is in Stage 3.
59
Ann, like myself, is 62 years old. We are the parents of three grown boys, all of whom are happily married. We have two small grandchildren. We married young, and we expect to celebrate our 40th anniversary this December.
Ann is, and always will be, a foodie. She loves to eat, cook, and grow food. She buys fresh food daily, and she cooks from scratch or watches us cook.( I am learning). She has over 500 cookbooks and is a walking encyclopedia on cooking and recipes. Besides raising three terrific boys, plus all their friends who hung around our house, Ann took care of me, who lived within a hectic traveling career. She was a leader in local school issues, which included a term on the school board. She was an active member of the League of Women Voters, led and won a tax referendum, and went lobbying in our state capitol or at national education conferences. She also was a frequent volunteer for the Mental Health Association. Along with being an activist, she was known to be talkative, funny, very informed, and very smart. And, fiercely independent.
Today, Ann is a quiet fighter who has not lost her sense of humor. But she is no longer the person that people used to know so well. Her conversations are shorter, or even nonexistent. Much is conveyed by grunts and nods but also with pats, hugs, and kisses. Our relationship, today, is what we call“ high touch.” She relishes family times with her children and grandchildren.
Let’ s face it: The fact that we are here today, at this conference, includes a component of luck. Why? Because we know the diagnosis.