For devoted parents like Stephanie Whitelock, exhaustion and fear are part of everyday life. The 46-year-old mum provides more than 70 hours of unpaid care each week for her 10-year-old son Gabe, who lives with cerebral palsy, autism and a learning disability. While Stephanie regards caring for Gabe as a "privilege", the overwhelming workload and financial costs have left her family struggling.
Family plunged into debt
During their most desperate time, the family were left £15,000 in debt, with additional expenses incurred by Gabe's disability piling. With an uncertain retirement plan and the prospect of continuing to care for her child as he enters adulthood, Stephanie is frightened of what the future holds. The additional cost of disability is set to rise by 12 per cent by 2030, adding up to £15,000 a year in extra costs, according to money-saving platform Purpl.
Gabe contracted Cytomegalovirus (CMV), a usually harmless virus, while still in the womb. The brain damage he sustained only became evident when the family realised he wasn't hitting the usual milestones. Mum-of-three Stephanie, from Reigate, Surrey, had worked for 12 years in the student services department of a local sixth form college, offering pastoral support. She went back part-time after Gabe's birth, but by the time he was around two years old, it became apparent that constant care was required.
Loss of income and rising costs
Stephanie told the Mirror: "I really loved my job, but I love my son more." She says early intervention is key, meaning time off for appointments and therapies was necessary. It got to the point where she couldn't keep going back to her employer to ask for more unpaid leave. Nowadays, Stephanie works a couple of paid hours of lunchtime cover at a nursery, which allows her to "step out of her caring role". With the family having been denied transport, Stephanie has to drive Gabe to school and can only work between 10 am and 2pm, severely limiting what she can do.
The loss of Stephanie's wage has proven a huge blow. She was previously on a five-figure salary, but this has dropped significantly to just four figures. The family has had to cut back on holidays and keep trips restricted to park visits and swimming. Additional expenses include travel and parking for appointments, higher household bills, specialist equipment, mobility aids, and healthcare-related costs. Extra clothing for Gabe comes with additional considerations: he wears a leg splint, so the family has to buy two pairs of shoes every time he gets a new one.
Childcare and medical costs
Childcare costs are also steep. Stephanie explains: "He goes to some disability clubs. My daughter attends one a couple of days in the holidays, it's £25 for the day. But my son has one that he can attend, and it's £105 a day. So huge differences. There are a couple of others that he can attend, but they're still around the £40 to £50 mark." While the family gets some products from the NHS to manage Gabe's incontinence, these are never enough. They buy extra items like gloves, wipes, and aprons towards the end of the three-month period.
Medical costs add up. Although Stephanie has had some great experiences with the NHS, the family has had to go private for certain therapies. Private physiotherapy sessions can cost more than £100 an hour, while a trip to a US clinic, where Gabe learned to walk despite being told this would never happen, set them back £10,000. They fundraised for that trip, but costs have continued to rise.
Emotional toll and lack of understanding
According to Carers UK, more than one-third (37 per cent) of unpaid carers report feeling overwhelmed due to insufficient support. Stephanie can relate. At 10 years old, Gabe requires dressing in the morning and at night. "You are changing, you're wiping, then there's obviously toileting, personal care for him. We're doing all of that every day; there's no let-up," she says. "Don't get me wrong, my son is an absolute joy, and it is a privilege to care for people. But it is tiring, and it's a lot to mentally keep yourself resilient. We are overwhelmed."
Endless hospital appointments take a toll. In the week before her interview, Gabe had two appointments in one day, stopping back at school for lunch in between. Stephanie has to advocate for her child despite feeling as though her "brain is mush" with stress. She "really takes her hat off" to carers who try to progress their careers, "because you just don't have the mental capacity sometimes by the end of the day to do anything".
Physical demands and social challenges
Stephanie believes there's still a lack of understanding of just how demanding the role of a carer is, both physically and mentally. "Until you've actually dressed someone who can't maybe lift their own limbs and isn't kind of able to engage and help you, it's really tiring. When I change my son, we've got a bed that we can move up because it hurts our back if we do it on the floor. It's really difficult now because he's too big."
There have been many occasions when Stephanie has felt at breaking point, including when Gabe has gotten stressed or upset in public, or when she's had to change him while "standing up in a dirty, disabled toilet". Socialising also presents challenges. At a football award ceremony, while others were chatting and having drinks, Stephanie was feeding Gabe, who started to get upset. She has had to leave many gatherings early to care for Gabe, feeling as though she stood out.
Looking to the future
Stephanie's eldest son is a young carer, and her four-year-old is following suit. However, she remains "incredibly fearful of what the future holds" as they look ahead to "the adult care world". She says it will be a "very, very difficult" transition. Thoughts like this give her sleepless nights, as do questions about how they'll save and keep providing for Gabe.
While there are benefits available, Stephanie says "it's not quite enough". The limit on how much she can work is complicated by the mental capacity required to keep a career going. She would like to see "caring mentors" in place to help with work, counselling, and practical things like manual handling. While some support is available through Action for Care, this isn't widely offered. "It would just be great to have like a one-stop shop that you could go and visit and see someone and get that kind of advice and have caring mentors," she says.
Considering changes she'd like from the government, Stephanie says: "I think maybe they need to look at getting people into work, what support they can provide financially. But then, what can we do to help with the mental load of everything? How can we provide some sort of support service and mentors, something that can help us that we can offload?" She envisions someone who understands the caring situation, discusses options, and provides support tailored to the individual's story.
