Doing the best we can

“Just take care of you”

I want to scream every time someone says,
"Just take care of you."
"Go for a walk."
"Spend some time on yourself."
"Do something for you."

Ugh. Really?

I know it comes from a good place — I know their hearts are in it — but honestly?
It’s just not that simple.
They mean well.
They’re doing the best they can.

But the truth is, caregiving has been, without a doubt, the hardest thing I’ve ever done.
I’ve hovered around caregiving most of my life — grandparents, my dad, my sweet mother-in-law Charlotte — but back then, it was always from the edges.
I was the one miles away, the voice on the phone, the steady stream of prayers.
When my dad began his end-of-life journey in Nevada, my sister and I coordinated everything long-distance - “How do we want to do this?” and “What would Dad want for that?”
When the end came, we both knew: we had done the best we could.
Her boots on the ground, my hands tied by distance — both doing our part the only way we could.

But this?
This is different.

My real caregiving journey started a few years ago, when my love’s health began its slow, painful rollercoaster decline.
Each twist and turn, each dip and dive, changed my role — overnight sometimes — into something heavier.

Now?
Roll call is 24/7.
My cell phone never leaves my side — into meetings, into the bathroom at work, tucked into my back pocket when I teach (on vibrate at the podium, of course) — always within reach.
Because "just in case" is not a maybe anymore. It’s a reality.

He wants to stay independent.
I want to stay on my professional journey.
Balance is everything.
We’re doing the best we can.

My daily To-Do list could rival any CEO's, but instead of conference calls and deadlines, it’s:

• Check wounds.

• Check feet and legs for swelling.

• Chart blood pressure.

• Monitor weight.

• Wrestling compression socks onto uncooperative legs.

• Reorganize the ever-changing mountain of medications.

• Stock the mini-fridge with doctor-approved snacks.

• Plan meals that meet this restriction but don’t violate that one.

• Monitor the camera at home for peace of mind.

(Some people think that's invasive. I call it survival. He calls it, "whatever helps you, hon." I'll take it.)

We’re doing the best we can.

Managing multiple diagnoses is enough to make you want to pull your hair out.
Different doctors.
Different facilities.
Different protocols that sometimes seem to work against each other.
I’ve had no choice but to become the quarterback — trying to call the plays, trying to make all the moving parts work together, sometimes ready to smash helmets if that's what it takes.

Treat the patient.
Not just the disease.

That’s all I ask.

I don’t expect every doctor to be an expert in MSA — most have never even seen a case and give you this weird look when you say it.
But I do expect open minds and open ears when I’m pressed up against the wall, having to give a five-minute crash course on a disease I wish we didn’t have to know about.

I drag a 16-pound satchel of medical paperwork (the ever popular white notebook) to every appointment (yes, I weighed it) because relying on memory or online charts isn’t enough.
When it’s my love’s life on the line, I want every detail in my own two hands.

We’re doing the best we can.

Some days I’m calm, confident.
Other days, I’m scrambling to catch my breath while the world around us spins like a tornado.
I can go from fluffy bunny to Monty Python killer rabbit in the blink of an eye if backed into a corner.

And thank God for my "phone-a-kid" option — our daughter and son-in-law both in healthcare — always ready to be the voice of reason when panic wants to take over.

Case in point:
The night his blood pressure dropped dangerously low.
He didn’t want to go to the ER.
I’m freaking out.
She’s calmly telling him, "Pa, knock it off and go," while telling me, "Mom, hang up and dial 9-1-1."
(And yes, in that moment, I really was just trying to do the best I could.)

Every evening, no matter how crazy the day’s been, I’m greeted by 60 pounds of wiggling Labrador joy and a quiet, "How was your day?" from the big guy in his favorite recliner.

My “good, how are you?” is automatic now, layered with love — and a quick once-over to check for bruising, swelling, anything out of the ordinary.
He always says he’s “good,” even when I can see the effort it takes just to say it.

He’s fighting battles inside his own head that I can’t see, can’t touch, can’t fix.

But he’s doing the best he can.

Somehow, through all the chaos, we still find silly moments.
Sitting in our recliners, laughing over the evolution of our kids’ lives.
Grateful for their happiness, their struggles, their journeys.
Knowing this road we’re walking affects them too — even when they don’t say it out loud.

And they, just like us,
are doing the best they can.