‘I gave up my job for 70 hour weeks of unpaid work for my son’

‘I gave up my job for 70 hour weeks of unpaid work for my son’ Stephanie revealed the harsh emotional and financial reality of being an unpaid carer as cost of living continues to rise 46-year-old Stephanie has been caring for her son Gabe since the day he was born, giving up her work and facing recurring burnout as the cost of living continues to rise for her family. The Reigate local shed light on the realities of being one of the millions of adults across the UK providing care without it being their formal work, known as unpaid carers. When Gabe was just a toddler, his parents realised he would need more care and support than his siblings and his parents took on extra duties as his carers. He was diagnosed with cerebral palsy, autism and a learning disability. As Gabe’s needs increased, Stephanie estimates she provided around 70 hours of unpaid care each week. Stephanie used up her annual leave, unpaid leave and other time-off allowances at her workplace before having to step away entirely. Stephanie recalled: “I went part-time initially after Gabe was born, but things became too difficult with appointments, therapies and caring responsibilities. Eventually, I had to give up my job completely. The biggest financial sacrifice we've made has been my career. “Caring means I'm not bringing in any income, and when I look at my friends, I know my retirement will look very different financially.” Stephanie is also facing a much bigger worry beyond work and finances: “I live with the awful thought of what happens when we can no longer care for him in the future” Now 10, Gabe spends some time in school which has allowed Stephanie to get a few hours of work. But Stephanie also faces emotional, physical and mental burnout and exhaustion. She shared: “The exhaustion is on another level because you are physically tired, but also tired from the mental load of appointments, therapy, medication, etc. “It's hard to find time to do things for yourself, especially if there is no one suitable to look after him. His brother and sister need me too, and my husband and I have no time together. “We have to be able to make an appointment or therapy session and with services being so overstretched, we don't have the luxury of turning them down. We're also totally weighed down by the heavy load of admin, and most times we are sleep-deprived.” “It's extremely difficult, and I haven't found that balance. Something always slips, and then I feel awful about that. I end up with burnout.” While Stephanie’s reduced working hours cuts down the income their family, Gabe’s medical needs also increases their cost of living including higher utilities, buying specialist equipment and travelling to appointments. Stephanie is able to claim Carers’ Allowance and her son gets DLA, which allows their family to use a Motability car, but this hasn’t been enough to cover the gap. She added: “We are struggling financially and emotionally. Finances contribute hugely to my anxiety and well-being, and the fact that it will always be this way. We've had to use credit cards and taken out a loan to help cover costs.” Georgia Colman, founder of money-saving platform for disabled people Purpl, shared: “For many families, caring responsibilities develop gradually over time. What it really looks like is constantly managing complex care needs, providing emotional support and covering high additional costs on top of that. Many people never access the support available to carers because they don't even recognise that the role applies to them. “The financial impact of caring is often hidden, but it's very real.” Stephanie added: “How we view care needs to change. It is a massive task to care for someone, but also a privilege, so it should be valued far more. And with the paid care sector in disarray, unpaid carers are picking up the slack. But we are reaching a crisis point where we need to look after unpaid carers before they burn out.” “Despite all of this, I consider it a huge privilege to care for my son and be his advocate. He is a wonderful, smiley and giggly boy who brings so much joy to our lives and those around him. We will do anything and everything to give him the best life possible.”