We’ve been unpaid carers for our family members for years – now the pandemic has pushed us to breaking point
ROLLING out of bed as her alarm goes off at 6am, 14-year-old Fayeth Jones prepares to get her three siblings up and help her mum with her medication.
It's a standard morning for the school girl, who regularly makes breakfast, cleans the house, sorts the washing, helps with household bills and keeps her sisters entertained to help her mum, who has severe epilepsy.
She is one of thousands of unpaid carers across the UK - some as young as five - who are working around the clock to help relatives who are living with debilitating health needs.
But while respite services normally offer professional care and trips away for disabled people, giving their carers a much-needed break, those are all gone now - leaving many feeling isolated and exhausted.
A recent survey, carried out by , found three quarters of carers (74%) are worn out as a result of caring during the pandemic.
And more research by found 40% of young carers (aged 12 to 17) and 59% of young adult carers (aged 18 to 25) say their mental health is worse since coronavirus.
Charities are now calling for more mental health support, as well as funding for alternative respite options, as the pandemic continues into winter.
'Carers are at breaking point'
Gareth Howells, CEO of Carers Trust, which supports carers across the UK, says the problems many people are now facing are a result of "a broken social care system".
“The value of the care that unpaid carers are providing, to the state, has been found to be £132 billion a year - almost the equivalent of a second NHS," he says.
“They’re spending ever increasing amounts of time at home, which means they drift away from their social networks… maybe they’ve had to give up their job, so they’ve lost their old colleagues.
“But they also feel abandoned, ignored and isolated. Since the pandemic, it’s just ramped that pressure up further still."
The charity's survey found 58% of young carers were spending an average of ten hours a week more on their caring responsibilities during the pandemic.
Mr Howells adds: "Carers are at breaking point, they’re burned out… This has to be a ticking time bomb of mental health problems."
Meanwhile, Kate Cubbage, who is head of external affairs for Carers Trust Wales, has seen first-hand the huge impact coronavirus has had on carers.
“In Wales, 96% of care that is provided in our communities is provided by unpaid carers," she says.
“Over the past few weeks I have met with a mix of carers and professionals, and carers have shared that they feel left out in the cold and isolated to a point that they say they have forgotten who they are during lockdown, because of their 24/7 caring role."
She adds: “For many [parent carers], the mental health services and support they rely on are no longer in place leaving parents to cope with children, some of primary school age, self-harming and trying to take their own lives."
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Disabled children and their families are desperately struggling because of a lack of support.
We want the Government to reinstate the £434m of funding it has cut from early intervention services – such as respite care and vital equipment.
It is time for the Government to Give It Back.
The number of disabled children in the UK has risen to nearly 1 million over the past 10 years – up by a third.
But funding and support has been cut.
Families with some of the most vulnerable children in the country are struggling to cope.
That’s why we’re working with the Disabled Children’s Partnership to help them.
Together we can make a real difference and hugely improve the lives of disabled children and their families.
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While Carers Trust work with people of all ages, they have some carers as young as five. Ultimately, they say there's an urgent need for some form of respite for these unsung heroes, many of whom haven't had a break for months on end.
Now, three unpaid carers share their stories of how the pandemic has pushed them, and the people they care for, to the limit...
'Carers are still people and have feelings'
Fayeth, from Rhyl, Wales, helps care for her mum Laura, 33, and her younger sisters Temperance, 11, Lily, 10, and Felicity, two, while her dad is away at work.
Laura can have as many as 20 partial seizures a day, where one of her limbs seizes up. However, she can also have more severe ones, which can either see her glaze over, forget entire journeys she's made, or fall unconscious.
It means she can't cook complex meals without Fayeth's help, having suffered serious burns in the past when she's had a seizure near the oven.
“In the mornings I get up around 6am normally, depending if I miss my alarm or not! Then I have to help wake up my sisters," Fayeth says.
“I also make sure my mum takes her tablets, then get all my sisters’ breakfasts before they have school.
"I help them find their school uniform and get dressed and stuff, sometimes I’ll do the washing before school too, loading the dishwasher and everything."
Fayeth doesn't completely switch off while she's at school either, as she then texts her mum throughout the day to remind her to take her meds.
Once home, she either helps her mum cook tea, or keeps her siblings entertained, before tidying up the house. She usually doesn't start her homework until after they've gone to bed, so she can have some quiet time.
Fayeth's dad Shane, 31, works as a plasterer, which means he can be out of the house for long hours. He also helps out as a youth leader at their local church, and when he's away on a trip with them, Fayeth steps in.
Laura also suffers with PTSD following a childhood trauma, which makes journeys out difficult for her.
Fayeth helps her nan by cooking meals and delivering them to her too, as she's high risk and can't go outside.
While she loves helping out, she welcomes the break that school provides - giving her time with her friends. However, as schools closed in the first lockdown, it meant she never got time away.
She's also met other young carers on day activities and residential trips, but all that has stopped now too.
Laura says: "Fayeth has had a lot of online sessions, but because she’s still at home, she’s still worrying about things at home.
“When she goes to the physical sessions, she gets to be her. She’s not Fayeth who looks after mum. And not Fayeth who helps cook because mum can’t use frying pans and stuff."
'I’ve been through struggles before, but never anything like this'
Single mum Diane Trowell, from Hull, has been caring for her son Wesley, 27, all of his life, after he was born with cerebral palsy.
Wes is physically disabled and a full-time wheelchair user, and has a device to help him communicate.
Diane usually gets Wes out of bed every morning using an electrical hoist, before cooking him breakfast or sorting a tube feed and finally washing him.
She then has a carer come throughout the week days, before she takes over again at night and throughout each weekend.
Wesley would usually go on around four week-long trips a year with Revitalise, a charity that provides respite holidays for disabled people and carers.
However, they have all stopped with the pandemic, and Diane hasn't had a break for months - while Wesley has completely lost his independence.
“I’ve really struggled through the last few months, I’m alright and then it just hits me," she says.
“I feel like I need to get out. I think, 'where can I go?' I go to the Humber Bridge and just sit there, it's really relaxing. Then I think, ‘I’ve got to go home’. You put the radio on and nothing’s changed.
“I’ve been through struggles in the past, worrying what Wes’ life held for him, but never anything like this."
Wes is extremely independent normally, organising all his own care needs via his computer, as well as regular trips to see friends and going to rugby matches with his carers or his mum.
However, being stuck inside has taken its toll on both him and Diane, and she is now hoping for more mental health support for carers, and ultimately, more recognition for what they do.
“I don’t think they realise what people are doing for mums, dads, children. They don’t realise what it involves," she says.
“There’s no switching off, at all. You can’t have a phone call without planning it. I’ve been doing this all Wes’ life."
Emergency respite care is a solution and must be made available now, before it is too late.
Revitalise CEO Jan Tregelles
CEO Jan Tregelles says: “The mental health and well-being of home carers is hanging by a thread.
"The pressures of yet another six months in isolation, caring for a seriously-ill or disabled loved one, without support or a chance to take a break is simply unbearable.
"Emergency respite care is a solution and must be made available now, before it is too late."
'I really felt like I lost my purpose'
Isabella Jones, 27, from rural Swansea cares for her grandma Rosemary, 84, who has dementia.
She usually has help from her sister Rosie, 23, but has been on her own recently as Rosie takes a well-earned break. With their parents further away, it's fallen on the girls to take over Rosemary's care.
"I look after her 24 hours a day, organising her life, cooking and everything, while also trying to do creative things with her," Isabella says.
“Throughout the first lockdown we didn’t have any professional help at all. Luckily in this one there’s a local lady that’s come and supported us somewhat. But we do need backup because she’s ill this week for example, so I’m on my own."
Isabella recently finished a creative degree, with her graduate project focusing on '', meaning she combined her studying as much she could with her caring role.
But she says: “After university I really felt like I lost my purpose because even though it was online at the end, it was still a community, and now suddenly it’s just me and my grandma."
Isabella usually relies on day care and activities for her nan to give her a break to focus on her own career, and seeing her friends, but as they've stopped, so has much of her own social life.
"The activities that normally stop us feeling isolated have gone – there needs to be more of that support," she says.
“We have this hidden face of carers that no one really understands. We’re almost not people, you get into a conversation and it’s like,’ oh you’re caring for someone’ and then it’s an awkward moment.
“People don’t mean it, but of course they can’t understand what it’s like."
Where to find support
There are a range of support services available for carers of all ages, and the people they care for.
Charity provides short breaks and holidays (respite care) for disabled people and carers.
works to improve support, services and recognition for anyone living with the challenges of caring, unpaid, for a family member or friend.
offers support to carers and connects them with each other, as well as professionals.
works to support siblings of disabled children who often carry out a lot of the care at home.
'Carers need to be recognised'
Carers UK are now calling on local authorities to make use of the Government’s Infection Control Fund to help reinstate crucial respite services that carers really need.
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They, and Carers Trust, also want local leaders to prioritise the health and wellbeing of carers in their plans over the winter, and ensure that wider social care services have enough funding to manage.
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Mr Howells says ultimately however: “The problems unpaid carers are facing now are deep-rooted and go back long before the pandemic. For far too long they have not been properly recognised, valued or supported.
“Coronavirus has made these problems much more visible, but it’s vital to remember that the crisis for carers was not made by Covid, nor can they be fixed by short-term interventions.”