A Marathon, Not a Sprint

What I’ve learned as my father’s healthcare advocate

The phone rang on Christmas Eve morning 2021. A doctor who had just reviewed my father’s bloodwork results was on the other end:

Doctor: Where are you?

Me: In my house.

Doctor: Where’s your dad?

Me: At his house. Why?

Doctor: Have you talked to him today? Is he alive?

Me: Wh … what?

Doctor: IS. HE. ALIVE?

On that day, my dad’s health had finally unraveled. On that day, I became a healthcare advocate.

In the nearly five years since, I’ve learned more than I ever knew there was to know about being an advocate.

Here’s what nobody tells you: Caring for someone inside a complex medical system is a marathon, not a sprint. My dad has a staggering number of specialists involved in his care: hospitalists, oncologists, nephrologists, infectious disease specialists, pharmacists, physical therapists, nutritionists and many nurses. Nobody automatically talks to each other. That became my job. I integrated into the care team in a respectful manner that keeps my dad at the center of every consideration, while the best team assembles around him.

I ask one question constantly: Who is responsible for the next step? That simple question saved us from falling through the cracks more times than I can count.

I stopped assuming information gets passed along correctly. From the ER physician to the hospitalist, from day shift to night shift, I verify everything. I’ve learned to follow every exam result and clinical note in the patient portals. I’ve educated myself on every condition, so I can be a more effective voice in the big conversations.

But coordination and communication only got me so far. I’ve learned to not get lost in his care, to not postpone my life. This is hard to do when your heart and soul are prematurely grieving.

I had to learn to ask for help. And to accept it. Dad had forgotten to take his phone charger to the hospital and was running out of battery. I was at work, running on two hours of sleep. I put out a Bat Signal, and within minutes, a friend dispatched a charger to his hospital room via Uber Eats. It sounds like a small thing. It was not.

If you find yourself in a caregiving situation, remember this: People want to show up. Let them. Then keep the door open, even when the terrain evens out, because someday, you’ll want them by your side as you walk the hardest stretch of road. Stalwart Liverpool F.C. fans — including my dad — know the anthem “You’ll Never Walk Alone.” Since Christmas Eve 2021, I’ve lived this song.

You will doubt yourself. You will amaze yourself. And you’ll be so glad you were there.