1st Annual Caregiving Conference

Welcome to those of you who may be coming to this site as a result of attending or streaming the 1st Annual Caregiving Conference.

My thoughts, of late, return again and again to “taking leave” as caregiving progresses.  The large and small ways that individuals and families untangle the history of a person from their existence right now.  Our history as a person comes with stories, stuff, places, and goals.  Our shift through life means that we pick up and put down these stories as time passes.

He was a cop, then he wasn’t.  He was a security guy, and eventually he wasn’t that either.  In the end, he was still trying to protect us all.

She cooked the meals, then they all did, then they ordered catering, and eventually they went to someone else’s house for a meal that he cooked.

They traveled around the world, then around the nation – a meandering road trip, then just the drive down their favorite hometown highway to see the leaves change.

We are still, always, the person we are.  Our reach may have shortened and our step may have slowed but our need for dignity, our need to feel loved while loving others, and our desire to be seen and heard in the world is relentless and unending.

 

Ebb and Flow with Continuation

16-hs-001-caregiverWhen I began this space in 2013 I had one set of ideas.  In the intervening years I stopped and started a number of different project while I waited for “My Voice” to settle in.  Ultimately, I have realized that my voice has a lot of different parts and it is in the variety that I am most “Myself”.

I want to talk with you about the American Healthcare system.  Sometimes it is my professional side that shows through, sometimes it is my caregiver side (when they mix up it is my Patient Experience vibe).  I’m also a healthcare geek and I love cheering on the scientists and loving hands that make it better for everyone as progress marches on.

My voice is one of eclecticism and rampant curiosity.  I know that now.

 

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.

Comfort in Crisis

Looking around at the medical status of people around me I can’t help but notice how isolated we become in moments of crisis.

A new diagnosis, an emergent illness, the drudgery of chronic illness all lend themselves to a unique type of isolation for both the ill and the healthy caregivers around them.

I don’t know what we do about this.

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.

What Healthcare can learn from the the Mac Genius Bar

This used  to work, and now it doesn’t.  Did I do something wrong?  Can you fix it?

The idea of Disney running your hospital has been around for awhile, and in terms of anticipating need and delivering a consistent and excellent experience it certainly is a model to contemplate.

Still, I think that the Genius Bar at a Mac Store is the better model.  If you are not familiar, the Genius Bar is the in-store customer support for Mac computer and mobile devices.  You walk in, check in with any employee, and then take a seat.  Your Genius comes to you, and trouble shoots your problem.

Why it matters to healthcare.

First, it is a rare person who will come in preventatively.  Most will come in under the auspices of “This used to work and now it doesn’t”.  That brings a whole different set of emotions than preventative care – and providers can be trained for the embarrassed, ashamed, aggressive, defensive background noise that comes with “this used to work and now it doesn’t”

Second, the Genius knows they are at a knowledge advantage and can react accordingly.  The Genius / clinician has to actively choose to speak to the correct level of the person they are working with.  When it becomes clear the person can keep up – they can raise the detail of the conversion – but only after they know everyone is on board.

Third, shaming doesn’t help and doesn’t bring them back.  Mac wants you as a customer, so they are going to follow the Wheaton Rule (“don’t be a d-ck!”).  By approaching even the dumbest of operator errors as simply a thing that needs fixing, a person can still be open to hearing about learning about the thing that they messed up.

Fourth, it just comes with the territory.  To own tech is to need tech support.  To have a body is to need body support from time to time.  It isn’t extra, it just comes with the territory.

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As for my own experience.  I find myself at the age where my technology has become a little bit magical.  I used to understand what was happening in a computer (at least at a basic level) but not anymore and today both my computer and my phone were in need of attention.

As I went in:

1.  I was embarrassed that I couldn’t fix it myself, and that I barely understood what the computer message was telling me.

2.  My phone was doing something so erratically, I was afraid that if they couldn’t see it they couldn’t fix it – so I filmed my phone freaking out with my computer so I could show them.

3.  I had never been to a Genius Bar so I didn’t already understand what the experience was, and I was slightly uncomfortable because of it.

And then:

I walked in and looked lost for a minute.  I was approached by a clearly marked employee and checked in.  When I asked for someone to look at my phone, they made the necessary second appointment on the spot.  I was escorted to a chair.  The phone guy came to talk to me – he was standing but my chair was high enough that my power was undiminished.  When I said I had a video of the phone freaking he asked if he could see it (instead of dismissing it).  He did the major work of fixing it and cleaned it some.  The computer guy came by and he went to work with me on the computer.  He described what was happening and had me going through the steps I would need to do to fix it.  I was thanked, I was able to thank them, I packed my things and walked out the door.

That is what I want from my healthcare.

End of Life

Once in my life I gave my consent for someone to die.  I look back now at how much support, understanding, time, and love we were surrounded in and I am grateful.  I hope to never need to give my consent again.

I look at some of my favorite people and I know that they are not being clear about their end of life wishes, that they assume those who love them will rally to the moment and not ask for more time.  They hope that it will be obvious and clear that the time has come and that shock, fear, sorrow, and regret will not cloud anyone’s thinking.

Not many of them know about the chaplain who saw me look up to the acoustic tiles when I said, “I’m ready to wake up now”.  Nobody was in the room with me the first time when the chaplain (mercy, poor man) said that they expected my husband to die.

I wonder if it is the same for everyone, but for me hearing that from the chaplain (12 years and 1 day ago) made clear to me that we all get to die.  We all get to have that experience on some random day that we cannot predict.  For as little control as I will have – I have this — I will die without regret.

 

“They told me she died peacefully,” she said.

Stunned, I remembered the Code Blue I’d witnessed, and couldn’t find the words to answer.

KevinMD.com is an interesting group of articles – emotional, clinical, business related, and amazing.  It isn’t always great – but it is never a waste of time.  Check them out!.