Olivia’s dad lived with muscular dystrophy. She was only 20 when he died of a brain bleed. She shares her heartfelt story of caring for him, their favourite memories together, and what she’s learnt from her dad’s strength.
Caring for my dad: love, loss and growing up too soon
My dad was 55 when he passed away last year. Even now, saying that out loud doesn’t feel real. It doesn’t make sense, not when you think about everything he had already survived. Doctors once told him he wouldn’t live past 20. They said he wouldn’t have children, wouldn’t have a full life, wouldn’t really be anything. But my dad spent his whole life proving people wrong.
When he was younger, people didn’t understand his condition. Disabilities weren’t spoken about properly back then. He was labelled as difficult, when really he was just a boy living in a body that people didn’t understand. They even refused to baptize him because he was disabled. It was only when he fell into a coma and they thought he was going to die that they finally agreed. But he didn’t die. He kept going. My dad always kept going.
My dad made great memories despite constant pain
He lived with muscular dystrophy, though we never knew exactly which type. What I do know is that he lived with pain every single day. The kind of pain most people couldn’t imagine. And yet he never made a fuss. He’d just say, “I’ll be okay,” even when he clearly wasn’t.
He loved fishing. Absolutely loved it. He’d go whenever he could, sitting peacefully by the water, like that was where he felt most himself. Sometimes we’d go together and I’d only ever catch tiny fish, while he and my brother would manage to get massive ones! He was always proud of me though and insisted on taking a photo. He was a Manchester United fan through and through, always watching, always shouting at the TV like it was a live match in our living room. When we got our dogs, Coco and Foxy, it really helped his depression. He loved them so much and they really brightened his life. He also loved music. Proper classics like Bruce Springsteen and Bob Marley. He’d blast them through the house and we’d dance together, laughing, singing every word. Those are some of my favourite memories. Just me and my dad, music filling the room, like nothing else mattered.
I helped my dad a lot – but he helped me in other ways
Nobody thought he’d have kids, but then he met my mum. They had my brother first, and then me. I always think about how lucky we are that he didn’t listen to what doctors said his life would be. Because if he did, I wouldn’t have had him as my dad. And being his daughter is something I will always be proud of.
When my mum and dad split up, it was just me, my dad and my brother. He became our whole world. And as I got older, I started looking after him more and more. Eventually, I dropped out of college because there was no one else to help him. My brother worked, and my dad didn’t have a carer, so it was just me.
I supported him with everything from cooking, cleaning, washing his clothes, helping him bathe, even doing the little things like tidying his eyebrows. My college mentioned at one point that I could get Carers Allowance, but there wasn’t really any support to talk me through how to do it. Obviously, it was tough sometimes, and nobody around me was in a similar situation which was kind of lonely. But he was my dad; I’d do anything for him.
Losing my dad will never get easier
He struggled more towards the end. His legs were giving way, and he needed a walking stick, though he didn’t like using it in front of me. I think he didn’t want to upset me. We had a stair lift that was always breaking and causing problems. It felt like there was always something going wrong. He had quite a lot of headaches and wasn’t well before he passed away, but we never really got answers.
His death was sudden; he had a brain bleed. They said he’d been having strokes in his sleep. It all happened so fast.
And now… now I’m here without him.
That’s the hardest part. It’s not just losing him, it’s everything that comes after. The moments he should be here for. When I get married, he won’t be there. When I have children, he won’t meet them. When I feel lost or ill or just need my dad… he’s not there. I’m a daddy’s girl. I always have been. And losing him feels like losing a part of myself.
Remembering the dad I loved
But I’m so proud when I think of his life. He fought every day. Against pain, against people’s expectations, against a world that didn’t always treat him fairly. And he still showed up for us as the best dad and enjoyed life as best he could. He was still making plans for the future when he died. He wanted to travel to Spain and Thailand. His passport arrived in the post a few days before his brain bleed.
That’s how I choose to remember him, as the dad we knew and loved.
