The Disappearing Act

It doesn't happen all at once. That's the thing nobody tells you. If someone had walked up to me in 2022 and said — hey, in about eighteen months you're going to be crushing pills into a feeding tube at midnight, administering IV antibiotics three times a day, tracking three dozen medications across multiple pharmacies, coordinating care between Houston and Austin specialists who can't figure out how to talk to each other, and doing all of this while holding down a senior engineering job at Amazon — I would have said that person doesn't exist. Nobody does all of that. That's not a person, that's a hospital.

And yet. There I was.

The trap doesn't announce itself. It closes slowly, one reasonable decision at a time. You pick up the prescription because it's on your way. You handle the insurance call because you're better at it. You drive to the appointment because she needs the passenger seat. You take the hospital call because — well, who else is going to take it? Each thing makes complete sense. None of it feels like a trap. Until one day you look up and realize that somewhere between the pharmacy runs and the specialist visits and the CaringBridge updates and the pill box management and the discharge paperwork, you have become the entire operational infrastructure of another human being's life.

And your own life is running on fumes.

“You lose access to care because you've become the source of it.”

Here's what makes it a trap specifically, as opposed to just a hard situation. The better you get at caregiving — and you will get very good at it, out of sheer necessity — the more invisible your own needs become. To everyone including yourself. You stop noticing that you haven't seen your own doctor in two years. You stop noticing that your ability to nourish your friendships has quietly withered, even when the friendships themselves are still there. You stop noticing that the only hobbies you still have are the ones you can do alone at odd hours — a tennis game at 10am before the day gets away from you, a guitar in a Houston apartment at night when she's asleep.

And then people start telling you how amazing you are. Which sounds like it should help. It doesn't.

“I don't know how you do it.” “You're so strong.” “She's so lucky to have you.” Every one of these is said with love. And every one of them quietly signals that the person saying it has decided you don't need anything. You've got it handled. You're the strong one. The strong one doesn't need a casserole or a phone call or someone to just show up on a random Wednesday afternoon.

I want to be honest about something. I had it better than most. I had Lonna — who despite being the patient, somehow always managed to worry about me more than herself. I had a son. I had a community of friends who showed up in real ways. I had CaringBridge, which gave me somewhere to put the experience so it didn't just accumulate inside me with nowhere to go. And I had tennis. Always tennis. The caregiver who lets everything go — the hobbies, the friendships, the identity outside the caregiving — that person is in real danger. I've seen it. A neighbor of mine growing up, Cliff, spent years caring for his wife. Competent, devoted, got out occasionally to play golf with friends. He did everything right. He didn't survive it.

I don't say that to frighten you. I say it because this is serious, and I think you already know that, and I'm not going to pretend otherwise. The caregiver trap isn't a metaphor. It's a genuine risk to your health, your identity, and sometimes your life.

The good news — and there is good news, I promise — is that the trap has a door. It always has. You just have to know it's there and be willing to walk through it even when everything in you says the patient needs you more than you need yourself.

That's what this site is about. Not how to be a perfect caregiver. There's no such thing. But how to be a caregiver who survives it — intact, identity and all — and maybe, against all odds, finds some joy in the sorrow along the way.

Casey King spent over two decades as a caregiver for his wife Lonna, who lived with scleroderma and underwent a double lung transplant in 2023. He is writing The Caregiver's Trap: A Roadmap for When the Caregiver Needs Care.

Continue reading