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.

Link Love and Commentary

I have been keeping a few articles open in tabs all week because I wanted to bring them together…

#1 – AARP talking about how (and what) to organize as a caregiver.  Excellent group of things and I cannot imagine what I would add.

#2 Turning web words into audio files.  Nick is talking specifically about journal articles but I don’t think the web reader would be that picky.  Great resource for people who want to stay connected to news and hobbies but can no longer comfortably read or sit at a computer.

#3 Shared Medical Appointments. Build community, get questions answered, hear both clinical and layperson suggestions for adaptation – what more could you want?  Of course, then the other people in the room know you have a specific condition but that isn’t all bad.

#4 Self-Management. A logical step in healthcare as folks become more interested in maintaining their own health.  Sad that it still seems like a mystery and a clinical inconvenience for some folks but it is just what happens as patients get educated and empowered.

 

Now, truth time, wordpress ate this once and I really hope it doesn’t gobble it up again because as much as I love these links my generally soapbox commentary just keeps getting smaller every time.

 

 

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.

 

National Geographic & Antibiotics

That sounds like I’m out sick – but I’m not.

The article “When You Swallow A Grenade” looks at the microbe impact of taking antibiotics.  It talks primarily about about it in a broad, layman’s way – just as they should.  Carl Zimmer does a great storytellers job of talking about what happens to a persons entire body chemistry when they are on antibiotics.  (Ladies, you know what we’re talking about here, right???)

It leads me to a minor confession – I am selectively dishonest about taking antibiotics that have been prescribed for me.

IF I am prescribed antibiotics and in the conversation with the MD/PA/NP it appears to be an actual *infection* of some sort, I will take them – as prescribed – every last one of them.  I generally add a probiotic / yogurt / kefir but not in immediately adjacent to the antibiotic.

IF the doctor mumbles something about a virus, or worse, appears to walk in the door with a prescription in mind — theeeeeeeen, I’m much less likely to get the prescription filled.  I am perfectly comfortable with feeling like crud while my body works it out on it’s own.

The other confession – I practice poor communication because I do not turn down the prescription.

I do not engage my MD/PA/NP by saying that I’m not planning on taking it, in doing so I don’t give them the chance to tell me that it is important, or that it is fine, or any of that other stuff that they might want to say.  I never open that door.

It isn’t completely my job, obviously, I wish MD/PA/NP felt more comfortable telling patients to rest and take care of themselves in a way that doesn’t involve antibiotics – but they aren’t.  I believe in patient engagement and a patient being a partner in their care … I suppose that next time it means I’ll need to own my choices and let them know when I’m not going to fill a prescription.  I want to open that door.

Important Questions

Ok, this was a nearly perfect article.

It highlights the questions that patients often don’t ask.  They are fantastic questions and will absolutely bring a patient closer into an engaged state with their doctor.

My favorite (ok, that isn’t fair – it is like picking a favorite child) … but a great one –

6.  How will I know my treatment is working?

Lovely, simple, important.  Such a tough question for some things (high blood pressure, etc…) but still – giving patients a clear sense of how it will FEEL when they do what they are being asked to do and giving them a chance to contemplate that in their life before they walk out the door.

Imagine being a doctor and talking about taking a diuretic having a conversation about the ways they will feel better but also talking about the urgency issues.  Then maybe hearing the patient think out loud about when they would take the pill (right before the commuter train? at bedtime?) and being able to suggest what other patients have tried.

I really enjoyed what I read, and I’m passing it on to the caregivers I know.