Today I’m talking on Google Chat with Denise and G-J. This spring we put a free e-book together called After The Diagnosis with things that we thought may be helpful for anyone who is facing time as a caregiver when a loved one has a new diagnosis.
I contributed because I really believe that the faster a family can get oriented to hospital culture, the more likely they are to become engaged on their caree’s behalf. I think it makes people more likely to advocate for good care, and more likely to speak up when they see things that need to be adjusted.
I talk about two primary times within After The Diagnosis – the immediate aftermath of the diagnosis (let’s say, the first weekend), and when it is really time to engage hospital staff when you “need to pick a fight”.
Why? Why those moments?
It wasn’t my first husband’s most critical health time, in fact that morning I thought he was fine. With his disease process his aorta was bound to be a trouble spot at some point in his life – and when it started to be I learned it by the doctor saying
“If he goes skydiving he’ll be dead before he hits the ground” – I guess skydiving isn’t such a great birthday present after all.
And with that turn of phrase that initial moment of new knowledge has always been a sacred, raw, universe changing moment and I’ve tried to figure out how to help people through it.
But then why talk about picking fights?
Sometimes you just need get something right and all the polite stuff your mama taught you just isn’t working.
When the first year resident was all excited about discharging my first husband even though it was such a BAD idea, it took most of what I had (at 26) to look at a DOCTOR and say that I wasn’t going to take him. I didn’t even know if I COULD do that. You can (and I was right not to take him, something WAS going on).
I’m proud of my contribution, I’m proud that it is free and downloadable into your electronic fidget of choice, I am proud that we each independently chose to write tiny essays so that it was digestible pieces of information.
G-J & Denise talk a lot of the nitty gritty details of the work of caregiving in those early days and together I think we’ve done something that can help someone.
I hope you’ll join us at the google chat.