I’ve been a caregiver since I was 12. I’m 22 now and exhausted
Trigger Warning: parentification, childhood neglect, mention of sexual abuse.
I’m 22. Female. And I’m not sure how to start, except to say this I’ve been in the service of others since I was a young girl.
When I was 10, my little sister was born. For two years, life still had small pockets of normal. I wasn’t allowed to go many places, but I could still visit a friend for a playdate, or they could come to me. It wasn’t freedom, but it was something.
Then my sister turned 3, and everything shifted. She wasn’t progressing.
She was diagnosed with severe autism, non verbal, and she has seizures. The first time she had a seizure attack, I was watching her with my older sister. That was the moment taking care of her well-being became my responsibility. I was 12.
For the last decade, I have been her keeper. You name it, I’ve lived it. Chasing her barefoot through the neighborhood when she ran. Pulling her out of oncoming traffic. Cleaning feces off the walls. Coming home from school to a kitchen destroyed, food everywhere, chaos and tying her to my back while I cleaned it all up before my mom got home. My mom never worked more than a couple of months but she was also never home, but if the house wasn’t clean, I would be blamed. And the last thing I wanted was her verbal or physical abuse.
My father was supposed to watch my sister while I was at school. I guess he was too old (60) to actually do it. When I walked through the door, he’d just go upstairs and sleep.
I have two older sisters. They had their own lives, jobs, bills to help pay, escapes. We were never financially okay, so we moved constantly. Every new house, my little sister would destroy. holes in the walls, filthy carpets, stains that never came out. And I’d start again in another unfamiliar room, just the two of us.
I need you to understand something. I love my little sister. I don’t blame her. She didn’t ask to be born. None of this was her fault. But I was completely, bone-deep exhausted by the end of every single day. And still, exhaustion wasn’t an excuse. I had to be a good student. A good, obedient daughter. I learned to smile and perform. I learned to disappear.
Eventually, I stopped leaving the house unless she was with me. She became stitched to my identity. I wasn’t me without her in the background. I couldn’t remember who I was outside of watching her. The one time I had two friends over, my father screamed at me because we were too loud and I was still watching her the entire time. My sister could never cry for long because it annoyed my father, and I’d be told to shut her up. My body lived in a constant state of fight or flight. Her hands were into everything if you so much as blinked, and I was always the one held responsible.
My parents did praise me for it. My father would tell me I’d be rewarded in heaven, in the eyes of God. I never understood what that meant. What I understood was that I desperately, desperately wanted one single day just for myself. I never got it.
I was a caregiver long before I knew the word existed.
I never had more than one friend at a time. One, because I could never leave the house or invite anyone in. Two, because we’d be priced out by the end of the year and gone. I spent my adolescence mostly alone with a little girl who couldn’t speak. So I talked to myself in silence just to feel less erased.
My older sisters were close in age. They had each other to talk to, to grow with, to build social skills. They could leave. My job was simply her. Keep her safe. Keep her quiet. Keep the house standing.
But who was keeping me? Who was noticing whether I was developing okay? Whether I was even okay at all?
There were plenty of times when an older boy in my neighborhood noticed I was always alone. He took advantage of that. He had his way with me a few times, and no one in my family noticed, or cared, as long as the house was clean and quiet and my little sister was perfect. They didn’t notice anything.
Fast forward to my late teens. I was still taking care of my little sister, but there was a new addition to the family, my oldest sister had a baby boy. She asked me to help, and I did. Gladly, actually. Taking care of a baby felt easy compared to everything I’d already survived. Even if I had to juggle watching my sister’s baby, my little sister, school, and keeping the house clean all at once.
Then my sister’s relationship with the father fell apart, and she moved back in with us. At first, it was nice having her around. But soon I was on double duty. She worked full-time to pay the bills and couldn’t afford childcare, so the weight quietly shifted onto me again.
A year later, my father passed away. My mother used his death as a tool, telling me that my father left me and my sister here to make sure my little sister was always taken care of. She thought that would anchor me deeper into the role. What she didn’t know was that my relationship with him had been crumbling for years. The guilt didn’t land the way she wanted.
Still, none of that mattered. Because I would have cared for my little sister anyway. I always did.
Now my nephew is 5. He’s also severely autistic, non-verbal, with intense behavioral problems, throwing, biting, scratching, running away. I love him deeply. It breaks my heart to see his meltdowns, even when he hurts me. I know this is not his fault. I see the toll it takes on my older sister. I know exactly what it feels like to live this life, so I want to help. And I have to help. Money is always a problem. She’s extraordinarily stressed. His behaviors are something I don’t think she ever learned to control when they first appeared, because everyone assumed my little sister’s autism was just because my mother had her late in her 40s. But I think it runs in the family now. I see the pattern.
With my help, my sister works full-time and cares for my nephew, who is still young and bursting with the same relentless energy my little sister had at that age. My little sister is 12 now. She’s beautiful. Smart. A young woman who can do a lot on her own. She’s calmed down over the years. My mother is now fully taking care of her. I started getting paid as her official caregiver, but I had to give that money to my mother so she could pay her rent. We live separately now because my mother is too difficult to live with, and because my nephew was becoming violent toward my little sister. We couldn’t allow that.
So here I am, in my early adulthood. Burned out. A hollow shell. Trying to be both emotional and physical support for my older sister while feeling like I’m dying with my eyes open.
I don’t know what I’m asking for with this post. Maybe nothing. Maybe I just want someone, even one person to know my story. I’m trying to teach myself all the things my parents never taught me. Exploring what my own interests might even be. Paying for college. Trying to keep my head up, even though all I truly want is to be left alone so I can sleep, and finally have some privacy to just cry.
Thank you for listening to my story. It means more than you can imagine, stranger.