Husband First, Caregiver Second

There's a moment that happens in long-term caregiving — I can't tell you exactly when, because it's different for everyone — where you realize that the roles have quietly swapped. You used to be a husband who was also helping out. Now you're a caregiver who happens to be married. The logistics have taken over. The relationship lives in the gaps between the medication schedule and the clinic appointments and the insurance calls.

I made a conscious decision early on — and recommitted to it regularly, because it required recommitting — that I was going to be Lonna's husband first. The caregiver role was real and it was demanding and it was never going away. But it was not going to be the primary thing between us. She was not going to look at me and see a medical coordinator. She was going to see Casey. The guy she'd been with for over forty years. The guy who still made her laugh. The guy who would absolutely send the waiter on an unnecessary errand just to watch her roll her eyes.

She was not going to look at me and see a caregiver. She was going to see Casey.

This sounds straightforward. It is not straightforward. When you're managing three dozen medications and coordinating between two hospital systems and tracking lab values and handling insurance and doing all the ordinary tasks of running a household on top of all of that — it is very easy for the relationship to become purely functional. You're both exhausted. She feels guilty about what she's asking of you. You feel guilty about feeling exhausted. Nobody says any of this out loud. And slowly, without either of you intending it, the marriage becomes a logistics operation.

The antidote, for us, was ordinary life. Deliberately, stubbornly, sometimes ridiculously ordinary.

We went to dinner even when she couldn't eat. She'd sit across from me with her feeding tube tucked under her shirt and watch me eat and we'd talk about everything except the medical situation. We went to museums. We sat outside when the weather allowed. We watched movies. We had opinions about things that had nothing to do with scleroderma or transplants or tacro levels. When she was well enough, we went on real trips — Disney World, the beach, Colorado. When she wasn't well enough for trips, we went around the block.

And we hugged. Constantly. She gets up from the couch — hug. Out of bed in the morning — hug. In the hospital hallway — hug. In public, in private, regardless of what was attached to her or how carefully we had to navigate around it. Hugs were non-negotiable. They were the thing that said — above all the logistics and the medication schedules and the lab values — we are still us.

She watched me hit tennis balls. I watched her do her pulmonary rehab exercises. We kept score of things that didn't matter. We kept a running commentary on everything. We were, fundamentally, still us.

I think this mattered to her survival in ways that are hard to quantify. There is real data on the relationship between social connection and health outcomes — patients with strong relationships do better, recover faster, tolerate treatment better. But I didn't keep the husband-first commitment because of data. I kept it because she was Lonna. My person. The one I'd chosen forty-five years ago and would choose again every day. The caregiving was how I expressed that. It wasn't a replacement for it.

Lonna always said she felt sorry for me. I never understood that — I never felt like the situation required anyone's sympathy on my behalf. But I think what she meant was that she was aware of what I was carrying and she didn't want the weight of it to change who I was to her. She didn't want to become a patient to me. She wanted to be Lonna.

So that was the job. Keep her Lonna. Keep me Casey. Keep us us — even inside all of it.

If you're a caregiver reading this and you feel the roles slipping: name it. Say it out loud to your person if you can. “I'm still your husband. I'm still your wife. I'm still your partner. The other stuff is real but it's not the main thing.” You may need to say it more than once. You may need to build in small rituals that have nothing to do with the medical situation — a standing dinner, a show you watch together, a joke that only the two of you understand. Hugs. Always hugs.

The caregiving will demand everything if you let it. Don't let it have the relationship too. That's yours. Keep it.

“Not only is Lonna my special human on this planet, but she is one bad ass mofo. I use the present tense deliberately. Lonna will always be my wife.”

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.

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