How life changes when the caregiver switch flips on

I’ve written before about not seeing myself as a caregiver in the traditional sense. For us caregivers, hemophilia doesn’t usually demand round-the-clock care. My husband, Jared, manages his condition independently. He infuses. He monitors his body. He makes decisions about risk and rest. My role on most days is simply to be his partner — not his keeper.

That changed abruptly when he suffered a second-degree burn on his hand just days before Christmas. What followed was a cascade of hospital stays, operating room procedures, consultations, and long hours of waiting. Suddenly, I was sleeping on benches, running to pharmacies, tracking medications, and advocating in spaces where caution sometimes tipped into paralysis because hemophilia complicated what otherwise would’ve been a straightforward injury.

Caregiver mode didn’t ease in. It flipped on.

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When structure disappears

As someone with attention-deficit/hyperactivity disorder, the disruption hit in a very specific way. I thrive on novelty, but I’m also deeply anchored to routine. Hospitalization erased that structure overnight. Meals, sleep, work hours, and parenting rhythms disappeared all at once. The scaffolding that usually keeps me regulated was gone, replaced by long stretches of waiting punctuated by moments that required urgent decisions.

For the first two days, the lack of structure was destabilizing. There was no predictable rhythm to hold on to — just uncertainty, interruptions, and the constant low hum of vigilance that comes with being in a hospital setting. It was exhausting in a way that felt both mental and physical.

Eventually, a different kind of routine took shape. It wasn’t planned, but it was grounding. My usual night-shift schedule softened — I was still working nights, but no longer completely cut off from daylight. For the first time in a while, I was waking up to sunlight. That small shift made a big difference. The days felt less disorienting, the nights less heavy.

It wasn’t the routine I would’ve chosen, but it was one I could live with. In the middle of disruption, it became an unexpected point of regulation — a small silver lining during an otherwise overwhelming stretch.

A crash course in constant care

That new rhythm didn’t make caregiving easy — it just made it survivable.

Caregiving, even temporarily, is relentless. It’s not just the physical tasks. It’s the mental load of anticipating needs, translating medical language, and staying alert even when your body wants to shut down. It’s the vigilance of watching pain levels, swelling, bleeding, and recovery timelines, all while trying to maintain some sense of normalcy for your child with the help of caring friends and loved ones.

What surprised me most was how quickly it consumed everything else. Work became fragmented. Time felt distorted. Days blurred together. The world outside the hospital narrowed to a series of decisions and checklists. I couldn’t even go to the gym.

I gained a deeper respect for those who live in this mode long-term — not just caregivers of people with hemophilia, but anyone supporting a loved one through chronic illness or prolonged recovery. The labor is invisible, but the toll is real.

After the switch flips

Jared is healing now — slowly and imperfectly, but steadily. Caregiver mode has begun to power down, although it hasn’t switched off entirely. Some habits linger: the hyperawareness, the readiness to act, the instinct to monitor.

I’m still not sure I identify as a caregiver in the traditional sense. But I do understand now how quickly that role can arrive, how deeply it can reshape your internal world, and how hard it is to explain the experience to anyone who hasn’t lived it.

Caregiving doesn’t always announce itself. Sometimes it just flips on — and you do what needs to be done until the moment passes.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.