Most evenings by 11:45pm, my house, which is usually a hub of activity, is finally quiet.
My day usually starts at 5am, waking up when the first carers arrive.
I’ve lived this life for over 16 years, caring for my son Elijah, who requires round-the-clock care.
And although I have support – a funded care package and a team of carers who help us 24/7 – I can’t shake the feeling like I’m doing it alone.
I was told it would be a miracle if Elijah lived beyond the age of 10, but he’s now 19 and defying the odds every single day.
He was born with Apert Syndrome, a rare genetic condition that causes premature fusion of certain skull bones and affects the shape of the head and face, as well as fingers and toes.
I knew it could be managed, because I myself was born with Apert Syndrome, but I also knew Elijah would need surgery early in life to manage this.
What I didn’t know was that a routine operation would go catastrophically wrong. A mistake post-procedure caused a profound brain injury, changing the entire trajectory of his life – and mine.
Suddenly, instead of recovery and rehabilitation, I was learning how to care for a child with complex, life-limiting disabilities.
From that moment, my world became unrecognisable.
Overnight my house became a care facility.
I had to give up work – as a single mum with no other family there was no way I could handle the needs of my child and a job.
Our small home had to become fully accessible with widened doorways, hoists, a hospital bed, a wet room, suction machines, and feeding pumps.
It no longer felt like a true home, but something more clinical.
And while we’re ‘lucky’ to have a funded package – something many families fight hard for and are still denied – this Carer’s Week, I want people to realise that the reality is still far from easy.
Our house is always full. Carers come and go day and night, which means there is no privacy, no quiet, no pause, no time to reflect.
It’s a strange thing, being surrounded by people constantly and yet feeling so alone.
Because, when it comes down to it, I’m the one who’s ultimately responsible for Elijah and I’m the one who manages it all, the practical side and carrying the full emotional weight.
Staff rotas, training, safeguarding, communication with healthcare professionals. It’s all consuming.
A typical day in our house starts early. There are handovers between carers, medications to administer, therapies to coordinate.
Elijah needs help with all personal care, feeding, movement, and communication.
We have up to eight carers across a 24-hour period. Each needs direction, support, and logistical co-ordination.
And even though I technically am supported, it’s me the carers come to when something goes wrong.
It’s me they call when there’s a gap in cover. I can’t be unwell, or distracted, or take a break without consequences.
Financially, we receive some support but there are still countless things we cover ourselves – because systems are slow, inconsistent, or just not built for real-life caregiving.
My home is the carers’ workplace; I heat it, provide refreshments, and amenities for all those people – it is draining in every way.
I think the hardest part for me is the dual role of being both my son’s mother and his manager.
Caring for Elijah isn’t just about physical or emotional support. It’s about legal and logistical battles. I advocate for my son constantly. I’m his voice in meetings with schools, therapists, healthcare professionals, and social workers.
It’s as rewarding as it is exhausting.
He can’t tell you when something is wrong. I just have to instinctively know. That kind of hypervigilance never switches off.
There are highs too, of course. Elijah is joyful, funny, and wise in his own way. He’s taught me more than any book ever could. But there are also lows.
The isolation, the sleep deprivation, the grief for what could have been, and the sheer exhaustion of being everything to everyone.
Several years ago, I hit a point where I realised I couldn’t go on like this. I was burned out, overwhelmed, and quite frankly miserable.
That’s when I found coaching, which gave me some space to breathe, think, and process.
Working with a coach helped me understand my own needs, set boundaries, manage better, and become more solution-focused. It gave me tools to speak up effectively, and also to listen to myself.
Find out more about Kaddy
Kaddy Thomas is the founder of Carers Collective, a charity providing peer support for parent carers. For more information visit:
www.carers-collective.co.uk
That experience changed me so much that I founded Carers Collective, a charity that offers coaching specifically for parent carers.
We offer carers a chance to reflect, recover and reconnect with themselves – not because caring goes away, but because they deserve support, too.
This Carers Week, I’m not looking for applause or praise. I’m asking for real, sustained support for people like me – financial, physical and emotional.
Those who constantly put their own needs aside to help their child, who love deeply, give constantly, and often lose themselves in the process.
We need care packages that respect the humanity of both the child and the carer.
We need hope. Homes that feel like homes again and above all else, respect and understanding.
Because while I will never stop showing up for Elijah, it shouldn’t feel so hard to show up for myself.
Do you have a story you’d like to share? Get in touch by emailing jess.austin@metro.co.uk.
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