The Quiet Voice of Caregiving by Michael Whelan

I follow him on X. His wife has Parkinson’s Dementia. He writes so beautifully.

TO ALL CAREGIVERS
The Quiet Violence of Caregiving.
by Michael Whelan

There is a peculiar kind of heartbreak in being the one who stays.

No one prepares you for how illness can rearrange the person you love. Parkinson’s is not just tremors and slow movements; it steals dignity, rewires moods, makes the gentle sharp-edged. It’s as if the disease borrows their voice and spits the words at you. The same lips that once kissed your forehead now hurl accusations, and you know...you honestly know...it isn’t them speaking, but the hurt lands just the same.

I sit across from her, the woman I met when the world was young and soft. I still see the girl with the patchouli oil and the laugh that once lit whole rooms. Now her hands clench, her face twists with frustration at a body that won’t obey her. She lashes out, sometimes with words that cut, sometimes with a glare so cold I feel the temperature of the room drop.

And I try to look relaxed while she screams at me for something that doesn’t even exist — a misplaced object, a forgotten promise, a slight she’s convinced I delivered. I try to keep my hands still, my voice even, as if my calm might steady the storm. But inside, I’m breaking. Inside, I’m pleading with the disease to let her go, even for just one gentle afternoon.

Because I know.
I know it’s the disease.
I know she’s frightened.
I know she hates what’s happening to her even more than I do.

But knowing doesn’t stop the quiet violence of it — the way each word, each outburst, chips at your heart. Caregiving isn’t just lifting her when her legs won’t hold her. It’s standing steady while the person you love, the one you vowed to honor and cherish, becomes through no fault of their own someone who sometimes seems to despise you.

People talk about caregiving as noble. They call you strong, a rock. But they don’t see the nights you sit in the dark kitchen, head in your hands, wondering how much more you can absorb. They don’t see you whisper apologies into the silence — not to her, but to the memory of who she was, the one you miss even as she sits ten feet away.

There is a loneliness to it so sharp it feels like a second disease.
You cannot grieve out loud because she is still here.
You cannot fully love the way you did because the disease gets in the way.
You cannot fully walk away because your heart won’t let you.

What remains is a tender, stubborn kind of love. The kind that stays even when it’s bruised. The kind that remembers the woman who held your face in her hands and said, I choose you. The kind that understands that beneath the agitation, the meanness, the rage at her failing body, she is still in there — scared, trapped, needing you to believe in her when she cannot believe in herself.

So I keep holding her hand when it shakes.
I keep standing close when she pushes me away.
I keep whispering I’m here when the disease speaks for her.

Not because I am noble. Not because I’m unbreakable.
But because love, when it’s real, doesn’t always look like the poems and the films.
Sometimes it looks like sitting quietly, taking the harsh words and letting them pass through you like wind through a broken screen door because the storm isn’t her fault.

In the end, I think the hardest truth of caregiving is this:
You have to let the hurt settle in your chest without turning it into blame.
You have to love the person even as the disease tries to teach them how to hate.
And you have to keep showing up, not just for them, but for the echo of the life you once shared the one you’re trying to honor, even as it slips further away.

That is what it’s like to be on the receiving side.
It’s love, splintered and scarred, but still somehow whole.