The Hidden Cost of Caring

People often assume that if a loved one is in hospital, the NHS takes over and the family can finally step back. The truth is very different. For relatives who care – siblings, partners, adult children – the role doesn’t stop just because there’s a ward involved. You’re still there every day, helping, advocating, feeding, supporting, watching over. Often, you’re still the one doing the most intimate tasks – washing, toileting, dressing – because you know your loved one best and they trust you.

And, quite simply, because the staff often don’t have the skill, time, or specialist training to meet those personal care needs safely. A relative might be the only person who can support safe swallowing, manage complex equipment, or communicate in the right way.

But once a hospital stay goes past 28 days, the financial impact can be brutal. Carer’s Allowance stops. PIP or other benefits can be suspended. The system assumes the hospital is meeting all needs, even when family members are still providing hours of unpaid care, often at the expense of their own work and health. And because you are tied to that role, you can’t simply increase your hours or find another income.

Meanwhile, life – and costs – carry on. Essential equipment at home still breaks. Adapted toilets, hoists, beds, wheelchairs – things granted because they are needed – suddenly become the carer’s responsibility if they need repair or replacement. Even when something is CHC-funded or provided through a disability grant, families can find themselves fundraising, arguing with services, or paying inflated repair bills.

If you got your wheelchair through the NHS though - it’s like this: an NHS wheelchair gets regular servicing and repairs because it’s accepted as vital. Why not a specialist toilet, a hoist, or the equipment that makes personal care possible? Why is something so basic – being able to wash, toilet, and live with dignity – treated like a luxury item?

And because so much money goes on repairs or covering gaps, there’s rarely anything left for a break or a treat. The question, “Are you going away this year?” often gets a blunt answer:

“No, I’m saving up to fix the self-cleaning toilet.”

Then someone might say, “But isn’t it irresponsible not to have savings?” And here’s the reality: how could we? When you’ve been caring 90 hours a week for decades, there’s no career to fall back on, no pension building up, no bonuses, no chance to save. Even if you could, you’re not allowed to keep more than a modest amount before benefits are cut. Carers live on the edge not because they choose to, but because the system keeps them there.

For many relatives caring for loved ones, this is the reality: a constant financial tightrope, unpredictable income, and essential personal care needs treated like optional extras.

This isn’t poor planning – it’s a system that expects unpaid carers to shoulder the work of professionals, without the pay, protection, or respect. It’s not that we don’t plan ahead. It’s that we’re holding everything together with nothing but love and sheer will, while the system looks the other way.

https://www.gofundme.com/f/help-fix-francescas-essential-specialist-toilet