In the 10 years I have been managing my daughter Little Miss’s care, I have worked hard to detox from the doctor-is-God philosophy. It has been very hard work. Freeing myself was a scary and arduous task that took considerable time and conscious effort. I still have to be very aware when I encounter a doctor. I do not want to succumb again to the illusion that if I depend on the doctors all will be well. I am required to be the voice for my daughter. I know her best and have the most information about her.
Most docs welcome questions and are respectful. It would simplify my duties if someone had all the answers. Physicians being the most educated seem a clear prospect! Unfortunately no single person can know all or even know who DOES know the things he/she does not.
My experience has taught me I must take responsibility for my daughter’s care. I am the case manager. The doctors can be amazing, but typically have either very generalized or very specialized information.
Little Miss’s numerous hospitalizations have been at one of the teaching hospitals in our metropolitan area. In early 2007 she was hospitalized for severe and paralyzing pain of unknown origin. She was hospitalized in 3 different facilities during a 4 week period. The endless array of docs exhausted us and terrified my daughter. Meanwhile, we had no answers.
To forestall further confusion and anxiety I appointed myself “Mother Bear”. No-one got near my “cub” without my specific and clear permission. I occasionally sat in a chair outside the room to take a break. As the “gray coats” (the docs with the most authority and power) approached, I would ask for their name, title, and intended purpose. Picture the shock! I was polite and professional and I knew that I was responsible for the decisions about Little Miss’s health care.
I also used this tactic with the nurses…. who by the way seemed to enjoy me quite a lot. When I left the floor I would say, “no needles, no tests, no examinations until I am back in the room” and the nurses were wonderfully cooperative!
My case management methods are very reassuring for my daughter. She was able to relax knowing that nothing could happen without Mom’s consent. It was and continues to be reassuring for me as well. Being able to say “no” or “wait” or “what about…” and expect cooperation means only I can grant the final approval before anything can happen.