Do you have your papers ready?

Papers, what papers are you speaking of?

It’s one of those conversations you think you’ll never have — until suddenly, you do.

It was our very first visit with the neurologist when the bomb got dropped:
"We need to talk about how you want the end of your life to be."

Enter the decision.
The decision that no one wants to make...but absolutely needs to be made.

Now let me be clear — our physician is absolutely amazing. Forthright, compassionate, and real.
He’s been upfront through this whole ugly process, and for that, I’m endlessly grateful.

He asked for the paperwork because, in his experience, too many families get caught in that heartbreaking limbo — the patient says one thing when they’re healthy enough to have the conversation, but once the drama hits (AKA the you-know-what hits the fan), the family flips back and forth and back again. And in that chaos? Life support is started because no one has it in writing.

With our daughter present, he said to her, “I listen to your mom and your dad’s wishes via paperwork. No drama. His voice.”

As he said, "I hate seeing families struggle. I know what the patient wanted. But without that paperwork, there’s nothing I can do."
By the time most families are facing it, they're exhausted — emotionally, physically — and clinging to hope or fear, depending on the minute.

Bear with me for a minute while I digress.
I remember as a little girl, overhearing my parents whispering in the kitchen about my brother, who was in a coma after an embolism meandered its way up to his brain following a basic surgery.
"Should we disconnect him? Is it even our decision to make? He's just a boy..."
I remember them talking about going to court, needing a judge to step in because no one wanted to be the one to say it out loud — to say it was time to let him go.

Scootch back to the present, and here I am, decades later, sitting across from a neurologist talking about what my love wants at his end.
It’s a punch in the gut. It really makes you stop and think.

"Do you want life-saving measures?"
"Umm, like what exactly?"
“Breathing tube?"
"Nope."
”Feeding tube?"
"Uh... still no."
"Pizza fed through a tube?"
"Depends. Whose pizza are we talking about?"
"Giordano's or Piece?" Sorry, this will only benefit our Chicago peeps!
"Mmmm, tempting. But still no. Not even for Beef Wellington. Though before I die, I totally want a Beef Wellington."
(We had to laugh — because sometimes laughter is the only thing that makes these conversations even remotely bearable.)

This disease is ugly and unpredictable.
It sometimes creeps slowly, then other times leaps forward when you least expect it.
You get comfortable for half a second and BAM — envision Marisa Tomei’s stomp in My Cousin Vinny — you’re thrown into some dark new abyss you didn’t even know existed.

Enter the world of paperwork:
The DNR (Do Not Resuscitate) and the Durable Medical Power of Attorney (someone you trust to make decisions if you can’t).
In Illinois, it’s called the POLST form — Physician Orders for Life-Sustaining Treatment.
It spells it all out — what you want, what you don't.

Let me tell you — sitting down and filling that out is no walk in the park.
But our physician pushed us to talk it through, and I’m glad he did.
Through the tears and laughter and what-if scenarios, my love made it very clear what he wanted. No big production, no machines keeping him here just for the sake of being here.
He wants to fade into the sunset — peacefully, on his terms.
(And yes, I asked him if he wanted a theme song for the occasion. He rolled his eyes.) Doesn’t everyone want a theme song? Peter Griffin on Family Guy had a theme song …

Here’s the hard part though — your other loved ones will probably have issue.
Not everyone gets it.
Not everyone wants to get it.
The questions start:
"Don't you want to fight?"
"Why are you giving up?"

Those conversations were almost as ugly as debating politics or religion at the Thanksgiving table; I’ve banned both out of survival.

It’s easy to tell someone to keep fighting when you’re not the one in the ring.

The truth is, it’s a deeply personal decision — one that's loaded with fear and guilt and love all tangled together.
But here's the thing:
No one else walks in my love’s shoes.
No one else wears his skin, fights his daily battles, or wakes up every morning wondering what fresh hell this disease will bring.

And while I'm only facing this from the sidelines, I know this much for sure —
When my time comes, my end will be on my terms too. No one else's.

And once you have your paperwork in order?
Make sure the right people know about it.
For us, that meant copies to the doctor, the local EMS, our executor, a trusted neighbor, and even taped copies on the inside of the front door and the downstairs entryway (yes, per EMS request!).
Because when things hit the fan, the EMS can’t just take your word for it — they need to see that paperwork to honor it. Otherwise, they’re legally bound to do everything possible to keep you alive. No bueno.

Bottom line?
Get your papers in order.
Have the tough conversations.
Think about what you want, and pick someone who will carry out your wishes when you can't speak for yourself.

I know that someday, when my love looks at me and says,
"I'm ready..."
there will be no words big enough to fill the void he will leave behind.
But I will honor his decision — just as I promised.

For the Illinois POLST Form: click here