The Weight and the Wings

When people ask me how I became a caregiver, I usually pause. Not because I don’t know what to say, but because there’s no simple answer. I didn’t plan for it. It wasn’t a career move or a calling I grew into.

It was love. And ALS didn’t give us a choice.

My husband, Jenson, was the kind of person who hummed when he cooked. Always fixing something around the house. Always the helper. So, when he started dropping things or stumbling on stairs, we chalked it up to stress—or maybe age. We even laughed about it at first.

But then came the diagnosis. ALS. Three letters that changed everything in a single afternoon. I remember sitting in the neurologist's office, Jenson holding my hand so tightly I could feel his pulse in my palm. The doctor explained things gently but directly. "There’s no cure," he said, and the words just hung in the air, heavy and unmoving.

What followed was a crash course in things I never expected to learn: how to lift someone safely, how to manage feeding tubes, how to communicate through blinking when speech became impossible. Overnight, I became a full-time caregiver. No training. No manual. Just determination, fear, and love.

The physical part was exhausting. But nothing compared to the emotional toll—watching someone you love slowly lose their ability to move, speak, and breathe. It was like watching pieces of him disappear, one function at a time, while trying desperately to hold onto who he was beneath it all.

And yet—Jenson never stopped being Jenson.

Even after he lost his voice, he found new ways to smile. His eyes said more than words ever could. We developed a silent language, full of meaning, shaped by blinking and eyebrows and small gestures. There were moments of laughter, even joy. Moments where we watched the sun rise through the kitchen window and didn’t need to say a thing.

There were also moments when I broke down—alone in the bathroom, or in the car parked outside the pharmacy. The weight of it all would sometimes feel unbearable. But somehow, we bore it.

Because love doesn’t quit.

What surprised me most during those years wasn’t how hard caregiving was—but how supported we could feel in small, unexpected ways. Neighbors who quietly mowed our lawn. Nurses who offered compassion without pity. Friends who sat with Jenson so I could sleep, or cry, or shower in peace. Little things. But they kept me going.

When Jenson passed away, the silence in the house felt like a scream. I remember sitting on the edge of our bed, unsure of who I was now that I wasn’t needed in the same way. Caregiving had become part of my identity. And suddenly, I was untethered.

But here’s what I’ve come to realize:

Grief and love are intertwined. Being a caregiver didn’t just exhaust me—it expanded me. I learned what it means to show up fully, to love through loss, to hold space for both sorrow and joy.

And now, when I meet someone beginning their own caregiving journey, I don’t try to offer advice or inspiration. I just say, “You’re not alone. This is hard. And you’re doing better than you think.”

Because sometimes, that’s what we need most—someone to see us. To understand. To remind us that love, even in its hardest form, is still the most powerful thing we have.

If you're caring for someone with ALS or another progressive illness, I see you. I was you. And even though our journeys are different, I hope this story reminds you that you’re not walking this road alone.

With love and solidarity,
— A fellow caregiver