I was ready to devote my life to my brother’s care. His death left me rudderless

My younger brother James changed how I saw the world. You noticed it first in the small things.

Olive oil was never next to the cooker but hidden behind 15 other bottles in an unknown cupboard. Supper might be rice topped with Petit Filous, or pasta with a chocolate mousse sauce. A cup of tea wasn’t offered so much as announced – an information notice that one would shortly appear.

Gradually, you internalised the logic. A fallen Lego tower required an immediate response. Doors to the outside world were opened slowly, and shut quickly, to keep out the danger of flies.

James had a learning disability – global developmental delay – and autism. He didn’t speak until he was seven, and never really learned to dress for the weather.

My family instinctively understood that we had to create a theatre set – a place where the world was kind and safe. The world isn’t easy for most children; it’s harder still for those with a disability. So we did whatever it took to hold up the walls. Most of the credit for that belongs to my parents. They kept that set standing day after day, even as the outside world threatened to enter it.

Caring wasn’t a one-way street. James looked after us too. I never had a chance to sit down without being covered in a blanket. When he came to visit me at university, he wouldn’t dream of taking my bed – which meant we’d both end up on the floor. When I left for university, I’d arrive at the station only to realise my phone was still three miles away at home – plugged in and fully charged, having been carefully removed from my bag beforehand so it wouldn’t run out of battery.

Some of the happiest times we shared were at Mencap summer camps. This was a residential week for children and young people with a learning disability, where the children were the stars. Days were packed – arts and crafts, sports, trips out – all with staff and volunteers who understood the children properly. It meant they could make friends, try things for themselves, and feel safe doing it. 1-1 helpers were around day and night to ensure they were safe.

James would arrive as a superstar – greeted warmly by carers who knew him well from previous years. I helped other children for the week – close by enough to help just in case, but rarely needed. Just as importantly, for families like mine, the camps were more than just a holiday. They gave my parents something they almost never had: a proper break.

For siblings like me, they also offered something different: doing something that I still believe matters deeply and supporting other children, while staying close by and still making sure my brother was doing ok. In practice, he was off having a brilliant time, he rarely needed me.

I don’t want to romanticise any of this. Alongside the joy was the grind familiar to millions of carers: appointments, paperwork, a fight for services, therapies; routines and repetition.

And as a sibling, I realised early that I was part of the caring team. I grew up sooner than I otherwise might have done; my role was to be part of the solution, not the problem. In time, I learned to step in when my brother had a meltdown in the sitting room, to hold him still while a doctor inserted an emergency IV needle despite his fear and screams, and to protect him from muttered comments in the coffee shop.

One of the reasons I wanted to write this piece following last week’s BBC’s Caring Matters week (a week of special programmes to help audiences navigate the role of carers) is that sibling carers don’t always get talked about.

Caring shaped who I became. I assumed that one day responsibility for James would become mine, as my parents aged. I didn’t resent that future; it was an honour. It gave my life a razor-sharp direction and true clarity about what mattered – James was my North Star. I assumed that future with James would stretch on for decades. By his mid-teens, James had a full vocabulary and an infectious energy that lit up rooms. He had a wide range of interests and a strong group of friends.

But James died just after his 17th birthday, when I was 24. The life I had grown up with changed overnight.

I miss him every day – sometimes I tell him the football results, and that Manchester United really will do better this year. I’ve got better at putting photos of him around the house, and smiling when I see him, not just feeling sad.

But death is crappy. It just takes, and it takes. There is no silver lining, no “but at least”. Losing James meant not just losing my brother and the endless joy he brought. It also meant losing a future I had assumed would be mine – a life defined by caring for him. It has taken time – and some help – to begin stepping out of a role I thought would be mine forever.

Thinking about James now, I find myself thinking about everyone who helped hold up that theatre set. Behind many disabled people stands not just a parent, but a brother, sister, grandparent, friend or neighbour helping them. It’s a quiet, powerful commitment based in love, and it deserves far greater recognition than it receives.

And we should be honest that love, while essential, is not enough on its own. James’ care depended on the combined efforts of his family, his school, respite services, charities like Mencap, and a system that worked to support him. That includes siblings, who often shoulder responsibilities that we shouldn’t have to ask of a young person – but we do, and they often take it on without question.

When I look back now, I often think about one of James’ “What makes me happy, what makes me sad?” charts. The things that made him happiest were simple: parties at school, coming home, and wine gums. Wine gums were at the top of the list. His biggest worries were missing Ready, Steady, Cook, being told “no Lego”, and – the biggest – his friend Sammy saving his goal.

Looking at that list now, I’m struck by how simple his worries were. Not because life was easy – but because so many people worked so hard to make it feel that way.

My parents and I spent years holding up that theatre set.

And James lit it up.

Alexander Dragonetti is an ambassador for the learning disability charity Mencap