She'd Hate the Word Hero

My mom has been my caregiver for thirty-four years. She still is, even now that I live in a nursing home and someone else handles the daily care that burned her out.

I’m thirty-four. I’m blind, autistic, and chronically ill. I have over thirty medical conditions, and the combination of them means I need care I can’t give myself. My mom has been the person who gave it for most of my life. She drove me to doctor appointments and school meetings when I was a kid, often with my three younger sisters in the car because my dad wouldn’t watch them. She stayed up with me at night when I was sick. She came and took care of me when she was in pain herself, when she was tired, when she should have had someone caring for her.

She still finds a way to get to me. She runs to the store for drinks and snacks. She makes sure I have what I need. When I call because something isn’t going right here, she’s ready to help fight. Always there, no matter what.

I used to not think about what it cost her. That’s how it works when you’re the one being cared for. You know it’s hard. You know she’s tired. But you don’t see the full shape of it until you’re old enough to look back and realize someone gave you their whole life.

My mom didn’t have a career. She had me.

She gave up her plans, her time, her energy, her health. She refused to eat when we didn’t have much food, because she wanted to make sure I was okay first. She pushed through chronic pain of her own to be present for mine. She burned herself out trying to give me the level of care I needed, and she would have kept going if her body hadn’t forced her to stop.

I know that. I carry it.

There’s a kind of guilt that comes with needing that much care, especially when the person giving it is someone you love. I’ve felt it. Not because she made me feel guilty. She never did. Because you can’t watch someone give everything they have to keep you alive and not wonder what it took from them. You can’t know that someone went hungry so you could eat and not feel the weight of that. You can’t know that someone pushed through their own pain to manage yours and not ask yourself whether you’re worth what it cost.

I don’t have an answer to that question. I don’t think I’m supposed to.

People call caregivers heroes. My mom would never call herself that. She’d probably laugh at the word. She didn’t do what she did because she was heroic. She did it because I was her kid and she loved me and there was no one else stepping up to do it. That’s not heroism in the way people usually mean it. It’s something more ordinary and more exhausting. It’s showing up every day for thirty-four years because someone needs you and you can’t not show up.

I can’t answer what caregiving has given back for my mom. That’s her story to tell. But I can say what it’s given me.

It gave me a life. Not a dramatic, inspirational, against-all-odds life. Just a life. One where someone was there. One where I didn’t have to face everything alone, even when everything was a lot. One where the person who showed up wasn’t doing it for recognition or gratitude but because she was my mom and that’s what she did.

I’m in a nursing home now. Someone else manages my medications. Someone else handles the daily physical care. My mom still comes. She’s not in the best housing situation herself. She’s dealing with her own health, her own pain, her own exhaustion. But when I call because something isn’t right, she’s there. She’s been there for thirty-four years, and the fact that someone else now does the things she used to do doesn’t change that.

I think about what it means to keep caring inside a system that doesn’t care well for its own. My mom wasn’t a healthcare professional. She wasn’t inside the system in that way. But she was inside a different version of the same problem. She was a caregiver with no support, no backup, no relief, no one checking on whether she was okay. The system that was supposed to help me didn’t help her. The services that existed didn’t cover what we needed. The safety nets had holes, and she was the one who filled them, every day, for decades.

When she couldn’t do it anymore, when her body finally said stop, I ended up in the nursing home. Not because she stopped caring. Because she physically couldn’t continue. And even then, even from outside the building, she’s still here. Still fighting. Still showing up.

I don’t know if that’s heroism. I know it’s love. I know it’s the kind of love that doesn’t announce itself, doesn’t ask for anything, doesn’t stop when it’s hard or when it hurts or when it’s been thirty-four years and you’re tired and your own body is falling apart.

I know that’s what kept me alive.

I don’t call my mom a hero. She’d hate it. But I know what she gave. I know what it cost. And I know I wouldn’t be here writing this if she hadn’t given it.