Ever since I first read the phrase "holding my nerve" I've thought it the best term for what we do.
I know everyone would say oh of coarse lovers and caregivers feel the same, but lets be clear. We don't. From the beginning of the dx stage 4 incurable nsclc D (my husband) and I have moved in very different worlds. His preparing to die and mine preparing to help him and move forward after his death. As it turns out there's an awful lot of living that is happening between the dx and the death and we're having a hell of a time living.
I found the term holding my nerve to be the best explanation of what he and I do. Obviously not the only one but it really cuts it down to the basics. Certain Spring uses it to help others understand the god awful torturous hell any of us can move to if we don't keep it together.
We try from time to time to start one of these conversations but they too often peter out before they get started. I'm starting one now after reading CS's note in another thread. She expressed the same need and not for the first time to talk openly about living with lung cancer.
Hopefully I'll get to explain more of my crazy new world with some of you.