There are around two million people who care for a sick or disabled relative in Britain. With this figure set to rise, Julia McWatt spoke to one couple about the challenges they have faced
FOR CARERS and those they support, it can be a constant battle just to get through everyday life.
Not only do carers face the emotional challenges that their roles pose but they are also presented with complex practical and financial issues and some struggle to find the right support that they are entitled to.
Many carers find they need to give up aspects of their lives to dedicate their time to support sick or disabled relatives. The financial implications of giving up work to care for them also has a huge impact.
A recent survey by Carers UK found many struggle to work and care, and an estimated one million have given up work or reduced their hours, losing an average of £10,192 a year. More than 40% said that caring had pushed them into the red.
The isolation and stress of caring can also cause mental health problems and getting into debt exacerbates this. Nearly 75% said they had suffered mental health problems, with that figure rising when the carers had been in debt.
Although caring for someone you love can be thoroughly rewarding, at times it may be very draining on both the carer and the person they care for.
Jeff and Hilary Fifer are carers for their 30-year-old son, Edward, who has Down’s syndrome.
The couple, from Cyncoed, Cardiff, say they have faced a constant battle to get the resources they are entitled to and find support that would suit Edward’s needs.
Hilary, 66, said: “ I remember when Edward was born I realised that something was wrong – it was his eyes. They took him off and did some tests and confirmed that he had Down’s Syndrome. There is a sense of disappointment that you didn’t have the baby you were expecting to have, but it was also a bit frightening as you were going into the unknown.
“My mother was very ill at the time and there was a lot going on to keep our minds off it. We kept it very much in perspective and we were given a lot of information by the doctors.
“Edward was actually a doddle as a baby, he was adorable. Helen, my daughter, had been a terrible baby, so he was easy in comparison. The problem was not so much when he was young, but when he was a teenager when he became very aggressive. He was at a special school in Barry and he got sent home a couple of times, but was never aggressive at home.”
It was only when Edward was in his late teenage years that they finally got the help that they needed.
Hilary, a university tutor, said: “When Edward was in school, we hardly had any support other than if a friend or a kindly neighbour assisted us. Our two daughters were also young at the time and I remember I was taking my daughter to visit a synagogue for an RE project and I suddenly felt a surge of anger about the whole situation. I was in a total fury that we had no support or help and we did not have a case manager. Edward seemed to have slipped through the net. I soon found out that you have to make authorities frightened so they do something.
“We finally got some help when Edward was about 18. He went to Barry Hostel as respite care and we paid for some things privately but our great battle was with benefits. Edward was entitled to the independent living fund, but that was kept quiet. It was only through friends who were in a similar situation that we found out about the disability living allowance.”
The couple say things have stabilised with Edward in the last few years, which they put down to finding the right care package for him.
Edward has around 30 hours of care a week, with support workers coming to the house and taking him to various activities such as Pedal Power and Vision 21, a charity which offers vocational training to people with learning needs.
Hilary said: “Edward in the old days was not the boy that he is today. It’s all to do with setting up a good programme and finding out what is out there, as nobody will tell you. You are left to your own devices to work things out.
“It’s a constant battle which is difficult with the exhaustion of caring. Many carers suffer with mental health problems, depression and anxiety.
“The secret is getting a good case manager, but you have to make yourself a nuisance to get one.
“If you are looking after an elderly person, then you know there is an end. But when you are looking after a child, then you know the care is there all your life. I have been determined not to be defined as a carer. There is a stereotypical image and I didn’t want to become that.”
Jeff, 66, a retired solicitor, said: “Edward is quite an easy case in many ways, some people have a really terrible time. But even with the care package, you still find your life is curtailed. Edward gets a varied day programme so one day he may come home at 4pm, but it might be earlier the next day, so you have to make sure you are home. You can’t go into town for the afternoon and decide to stay there all day. Nothing can be done spontaneously. “It’s only when the person goes out on respite that you realise how much you do for them. Every day is a routine and when they go out, you don’t really know what to do.”
Although things have stabilised at the moment, the couple say the future is a concern for them.
Hilary said: “ A great worry for parents of children with leaning difficulties is what will happen in the future. There are projects, such as the shared lives scheme and small community houses, but the problem with the community houses is that there is a constant turnover of staff. There’s a basic immorality, people whose jobs are so vital in society are put on such low wages.
“Edward is very affectionate and needs somebody to be with him. I know if anything happened, that his respite support care would take care of him. But it is always in the back of our minds and is a constant worry.”
For information and support for carers, visit There are around two million people who care for a sick or disabled relative in Britain. With this figure set to rise, Julia McWatt spoke to one couple about the challenges they have faced
