With more than one-third (37 per cent) of unpaid carers reporting feeling overwhelmed due to insufficient support, mum-of-three Stephanie Whitelock has opened up about the financial and emotional toll those without caring responsibilities may never see
Sleep deprived, burnt out and plunged into debt, Britain’s carers are on the brink. For devoted parents like Stephanie Whitelock, exhaustion and fear are part of everyday life, and it’s feared that things could get much worse.
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.
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.
Sadly, with the additional cost of disability set to rise by 12 per cent by 2030, adding up to £15,000 a year in extra costs as per money-saving platform Purpl, families like Stephanie’s are being driven to despair.
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 for 12 years been working for 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.
Something had to give. Stephanie tells the Mirror: “I really loved my job, but I love my son more.” The mum says that “early intervention is key” when it comes to situations such as Gabe’s, 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 “wonderful 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 says she can only work between 10 am and 2pm, severely limiting what she can do. She explained: “We have been refused transport as technically we chose a school further away than our closest SEN school, but at the time our closest was full, and we had no choice.”
Sadly, the loss of Stephanie’s wage has proven a huge blow, and there are things the family can simply no longer afford. They’ve had to cut back on holidays and keep trips restricted to park visits and swimming at the local leisure centre. While she was previously on a five-figure salary, this has dropped significantly to just four figures.
More “extravagant” treats remain out of reach. Day-to-day, the price of travel and parking for appointments, higher household bills, specialist equipment, mobility aids and healthcare-related expenses have taken their toll on the family, while extra clothing for Gabe comes with additional considerations.
Gabe wears a leg splint, so the family has to buy two pairs of shoes every time he gets a new one. Then there’s the childcare costs. 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 does get some products provided to them from the NHS to help manage Gabe’s incontinence, these, she says, “are never enough”. They still find themselves buying extra items, including gloves, wipes, and aprons, towards the end of the three-month period when their next delivery is due.
Stephanie says, “If anyone comes to help or look after him, they need to have that in place as well. There’s a lot to think about on an everyday level as well that just mounts up.”
Then there are the hefty medical costs. Although Stephanie has had some great experiences with the NHS, with Gabe’s care, the family has had to go private for certain therapies, which has proven costly.
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 were thankfully able to fundraise for this particular life-changing trip, but the steep costs have continued to rise over the years.
According to recent research by Carers UK, more than one-third (37 per cent) of unpaid carers report feeling overwhelmed due to insufficient support. This is sadly something Stephanie can relate to all too well.
At 10-years-old, Gabe requires dressing in the morning and at night. Showing emotion as she details their routine, Stephanie tells us: “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.
“Don’t get me wrong, my son is an absolute joy, and it is a privilege to care for people. I absolutely know that. But it is tiring, you know, and it’s a lot to mentally keep yourself resilient. We are overwhelmed.”
Endless hospital appointments can also take a toll. Stephanie tells us how, in the week before her chat with the Mirror, her son had two appointments in one day, stopping back at school for lunch in between. All the while, she has to engage with health professionals and do her best to “advocate” for her child, despite feeling as though her “brain is mush” with the stress of it all.
Stephanie “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”.
The mum believes there’s still a lack of understanding of just how demanding the role of a carer actually 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 as though she’s reached 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. Stephanie recalls one recent instance at a football award ceremony where others were “chatting, having their drinks, and having a wonderful time.” All the while, Stephanie was busily feeding Gabe, who “started to get upset”. There have been many such gatherings where Stephanie has had to leave early to care for Gabe, all while feeling as though she somehow “stood out” among the other parents.
Thankfully, the mum does have some help in the form of her eldest son, who is a young carer, and says 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 be able to save and make sure they can keep providing for Gabe as long as they can.
Stephanie shares: “I’m looking forward to life together as a family, but I’m also fearful of making sure we can provide for everything that’s changing and the unknowns.”
While there are benefits out there, Stephanie says, “it’s not quite enough”. And the limit as to how much you can work is further complicated by the immense mental capacity required to keep any sort of career going.
Going forward, Stephanie would love to see “caring mentors” in place who could help out with things such as work, counselling, and practical things such as manual handling.
While some support is available through Action for Care, a private UK healthcare company that provides residential accommodation and specialised support, this isn’t widely offered. Stephanie said: “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. I think that would be quite a good way of helping us.”
Considering what changes she would like to see from the government, Stephanie continued: “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?
“People who understand what we’re going through, that we talk our situation through with and look at options, kind of like if you went for Job Seekers and you sat down and you discussed what you’re applying for, but this time it’s someone who’s well aware of the caring situation, what options are out there, ‘tell me about your story from who you care for and how we can fit in and give you some support through that’.”
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