A Caregiver’s Reality

I’ve cared for Andrea for her entire 43 years — not just through medical fragility, but through childhood, school, friendships, challenges, and victories. I advocated for her, pushed for integration when others preferred isolation, and made sure she was seen for her abilities, not her limitations. She graduated with her peers — 33 credits, one more than she needed — because she worked hard and because I refused to let anyone underestimate her.

The medical chapter of our caregiving journey began much later. About twelve years ago, severe pneumonia led to a 14‑day hospitalization and the start of long‑term oxygen support. In 2020, COVID brought another 14‑day hospital stay — one of the hardest seasons of our lives — with moments when we weren’t sure she would come home. They struggled to wean her from 10 liters down to 5, and the damage to her lungs never fully reversed.

Since then, a series of hospitalizations have taken more from her lungs each time. And this year — May 31 through June 9 — everything changed again. CO₂ buildup. The OSA diagnosis. The BiPAP. The desaturations. The fear of what we might wake up to. The fear of what we might not.

Caregiving shifted from advocacy and guidance to medical vigilance — watching numbers, listening for alarms, responding to instability, and navigating a home environment that suddenly needed tools it didn’t have.

That’s when I realized something I couldn’t ignore: the tools caregivers need simply don’t exist in the home. Not gentle ones. Not intuitive ones. Not ones designed for real‑world life.

So I did what caregivers do: I adapted. I advocated. I paid attention. And eventually… I invented.