After The Diagnosis – Google Chat Today!

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.

A free ebook from caregiving.com that I helped write

When a new diagnosis enters a family it is tough to know what to do.

Denise, G-J, and I have put together an ebook with some helpful essays, hints, and documents  to help caregivers and carees get their feet under them.

Curious about it?

Denise says – The cure for the fear of mortality is to make the most of the moments. Live for today. Tomorrow, you’ll be so glad you did.

G-J says – A new diagnosis can me an lot of appointments, especially in the beginning. Prepare at least a day in advance for any scheduled medical visits. It helps to have a bag designated as the one you take to appointments so you don’t have to think about what to use each time. This list will help you pull together all the items you will need.

I said – Hospitals have a variation of most of most things that a town has. They also have their own personalities and social norms. As a guest in a hospital it can be a little like getting dropped in a slightly foreign country. You recognize all of it, but it doesn’t feel natural to move around in.  So here are some questions to ask that will help get you oriented when you are in a new hospital.

And then we keep saying other stuff.  Checkout caregiving.com for support and care.

Caregiving and making things

I talked with Denise today on her web radio show (the link goes to the podcast file).  I am also volunteering with her in a couple of capacities and I’m going to get a chance to do some writing for her.

Who is she?  She is from caregiving.com and aftergiving.com and she does a lot of work with people who are caregiving and when that process ends she helps them transition out of their caregiving role.  She is also charming and interesting and I am having a blast getting to know her.

For people who are just entering a caregiving situation it is important to start to build your community because there are days when you love your caree but don’t like them much.  Their are days when people will give you a pitying look and tell you that you are a saint when what you want is a shower and to listen to your own music really really really loud.

I find the work she is doing, and the dedication with which she works at it very inspiring.  Go check it out, and sign up if what you need is a little support as you become a caregiver.