Life for former nursing auxiliary and mother-of-four Andrea Fenton revolves around caring for her seriously disabled husband Mark.
She is one of the 7m carers in the UK (one in 10 of the population) who support a family member or friend with an illness, disability or mental health problem.
Each morning care workers arrive at their home and spend an hour helping to get Mark ready for the day ahead. And three times a week Andrea gets a few hours of respite relief through the Carers Trust charity (formerly Crossroads). But the rest of the time she manages by herself.
Andrea says the trust has thrown the family a “lifeline” and she can’t speak too highly of the help offered by the trained care workers employed by the charity. “They’re not just employees,” she says, “they’ve become friends. The three people we’ve got coming in every week brighten up our day. They are like an extension to our family.”
Without the Carers Trust Andrea accepts that she’d get no free time at all – and little time to spend with her sons doing the everyday things other families take for granted. Such help is especially valuable during the school holidays.
Mark, 50, has a rare genetic disorder, Multiple Mitochondrial DNA Deletions, that he inherited from both his parents. He was just 21 when he began to experience early symptoms, such as loss of balance. Since then the condition has progressed and today he is unable to walk, has to take medication to prevent spasms in his limbs, and struggles to eat and speak clearly. The family liken the life-limiting disorder to the more-familiar Motor Neurone Disease.
Until 2003 Mark worked as a mechanical engineer for a Brighouse company, but worsening symptoms forced him to retire early. Andrea also gave up work to combine raising their family with caring for her husband. They have been married for 24 years and for half of that Mark has been badly affected by his illness.
The role of carer is one that Andrea has embraced in a way that demonstrates just how devoted and remarkable many carers are. While she has help from an agency every morning, she gets Mark ready for bed each evening on her own or with assistance from her younger sons. It’s many years since the family had a holiday together. But, as she explains: “We look after our own. I cared for my grandmother in our home until she died and my sister when she was terminally ill. And my boys are really good. They’ve always been surrounded by care and looking after others. They are very caring and understanding.
“The doctor says that Mark should be in a nursing home but Mark doesn’t want that and we want to look after him ourselves. It was even hard to let go and accept outside help from the Carers Trust about three years ago, but I was a full-time mum and really needing a break.” In order to provide care at home, their semi-detached house has been adapted and has a ground-floor bedroom and wet room with special hoists.
While there’s no doubt that Mark’s condition has had a major impact on what the family has been able to do over the years, Andrea is convinced that it has made their sons, Oliver, 22; Benjamin, 17; Bailey, 14; and Harvey, 11, more empathetic. She is often complimented on how kind and helpful they are. Oliver is now training to be a teacher, Benjamin is at agricultural college and Bailey says he wants to go into a caring profession.
Andrea believes contact with care workers has also enriched the lives of her everyone in the family. For the past year they’ve had regular visits from Ash Baker, employed by Carers Trust. He is one of three trust workers to call on the family – Ash’s mother Amanda Rhodes is also a care worker for the Fentons.
The day I called to meet Andrea and Mark at their Liversedge home, it was Ash’s last shift, as he’s cutting back his hours in order to take on more administrative duties. The Fentons are sad to see him go but will still get visits from their other two regular care workers.
Ash, 26, who lives in Dewsbury, has worked in the care sector since he was 18 and was influenced in his choice of career after witnessing the care given to his uncle, who had Motor Neurone Disease, by his mother and aunt. He also helped to look after his grandparents. Working for the Carers Trust, he says, is “by far the best job I’ve done”. Initially he worked with adults with mild disabilities and those in drug and alcohol rehabilitation but now enjoys helping carers and going into people’s home. He explained: “Every day is different. One day you might be helping someone pay bills or going swimming with them, the next you’re being asked to play on a Playstation or go shopping. You are meeting different people with different needs.” His work has taken him from Slaithwaite to Pontefract and everywhere in between.
Mark, who has been fitted with a Percutaneous Endoscopic Gastrostomy (PEG) tube, through which liquids can be fed directly into his stomach, requires high levels of personal care and Ash has been trained to deliver a certain degree of medical assistance for such clients. But Ash says spending time with Mark while Andrea rests, shops or goes out with friends and family can involve watching movies or sport and sharing their interests. He sees the Carers Trust as an organisation that provides satisfying work, career mobility and a solid training background. But he acknowledges that fewer young men are in caring roles compared to women, perhaps because they don’t know about the opportunities.
While Mark’s condition is life-limiting, he has been able to watch his children grow. His sister Karen was not as fortunate. As Andrea explains: “Children with the condition don’t normally survive childhood, so Mark’s been lucky. Both of his parents were carriers and his sister died in 1984 when she was 24. The boys are carriers but aren’t affected. If they want a family of their own when they’re older they will be able to benefit from the new three-way IVF programme that’s been developed, if their partners are also carriers.”
* Sandra Phillips, Operations Manager for Carers Trust Mid Yorkshire, says the organisation is in desperate need of more care support workers. While those with an NVQ have a headstart, the charity takes recruits with no previous experience. “We are looking for the right attitude and the passion for helping others,” she says. “We offer a diploma and training and there are all sorts of opportunities. The minimum age limit is 18 and we have care workers of all ages, some in their sixties.
“Recruitment has been an issue for a long time. One of the problems for us has been that care workers stay with us a long time and we have a number who have retired and that’s left a gap.”
Looking for a job? Click here to see what's on offer round Huddersfield
Those interested in a care career need a full driving licence and must have a criminal records check. Pay rates start at the Government minimum of £7.20 an hour for those with no qualifications, but travelling time is paid and expenses are reimbursed. Those with an NVQ start at £8.14 an hour (more for evening cover).
Carers Trust has around 100 care support workers and serves clients in Kirklees, Calderdale, Wakefield and South Leeds. In Kirklees it has a council contract to provide short break respite care and runs a day centre for children with disabilities in Dalton.
For more information on roles with the Carers Trust call 01484 537036 or email email@example.com