“We very much have his and hers children”
Pam Johnson, 44, and her husband Tony, 53, live in Stafford with their two sons, Ben, 10, who has a severe learning disability and challenging behaviour, and Thomas, 13.
Pam and Tony both work in Mencap’s community development team, which means they know what support Ben should receive and where to get it. But caring for him can still strain family life.
“We very much have his and hers children – I do everything with Ben and Tony does everything with Thomas,” says Pam. “We don’t sleep in the same room, we have separate holidays, we have separate social lives, because we have no one to look after the boys. It is difficult, because Tony and I would rather be together, but this is much more about giving Thomas a normal life.”
“In lots of ways, it’s a normal brother relationship but Ben does impact on Thomas’s life. Thomas has become less tolerant of Ben as he’s got older. But he would fall on a sword for Ben. He did ask: ‘Do you expect me to look after Ben when you die?’ And we said ‘no, we’d like you to look out for him, but we don’t expect you to give up your life’.”
Planning for the future is a big issue. “For me, Ben will never leave home,” says Pam. “It’s about keeping him safe. Cases like Winterbourne View make you realise that.
“Ben is my best friend. But, he’s getting older and I want more time with Tony. Time is precious. So we need to find someone who will care for Ben and give us some time off.”
“I’ve got to do it – he’s my son”
Great-grandfather Alfred Winter, 90, of Ashby-de-la Zouch, Leicestershire cares for his 57-year-old son Keith, who has cerebral palsy.
Alfred, a retired coal miner, admits it’s tiring caring for Keith. He only gets a one-week break, five times a year, when Keith goes into respite care.
A carer comes to his flat – in a warden-controlled housing scheme – every morning, to help Keith shower and dress. Keith, who uses a wheelchair, then goes to a day centre from Monday to Friday. Alfred makes Keith’s lunch and cooks him a hot meal when he gets home. In the evenings, Keith enjoys watching television. “He tells me what’s coming on,” Alfred explains. “He likes Midsomer Murders.”
Alfred’s wife, Nora, died in 2005. He has arranged a trust for Keith, so he can provide for him after his death.
He admits he struggles. “It’s difficult if he wants to go to the doctors,” he explains. “It’s hard to get the wheelchair in the car and out again.” But, he says, “I’ve got to do it – he’s my son”.
“We had to have an extension built on the side of the house”
Sharon Aherne, 49, lives in Ellesmere Port, Cheshire, with her daughters – Chelsea, 22, who has PMLD, and Taylor, 20 – and her son, Connor, 18, who has a learning disability.
Caring for a son or daughter with profound and multiple learning disabilities (PMLD) comes with issues that don’t apply to those caring for someone with a less severe disability. Accessibility is one of them.
“When they are under ten, it’s quite easy to take out a child with a disability,” Sharon says. “You can change them in a baby changing room. Accessibility didn’t become a problem until Chelsea got past that age. Now, I know that if I’m going somewhere, I have to be back in four hours, if there are no changing facilities.
“When you’ve got other children, it’s harder, because they want to do different things. I have been lucky that my children understood that when Chelsea was in respite, that’s when we would go bowling or to the pictures. I’m not saying that Chelsea never did any of those things, she did. But there was always a time when she would be ill and couldn’t go. Without the respite, it would have been horrendous.”
Sharon had an extension built on the side of the house, for Chelsea’s bathroom and bedroom. It includes a big bath, changing mat and ceiling hoist in the bathroom, and a purpose-built bed in the bedroom. The back garden has been concreted, for Chelsea’s wheelchair.
Sharon got funding from the local council for the extension, but still struggles financially. “I still get Income Support, because I’m looking after Connor,” she says. “After that, I don’t know what will happen, whether I will just get Carer’s Allowance. If that’s the case, I don’t know what I’ll do. But I have to get by.”
To find out more about Mencap’s support for families, visit the families pages on the Mencap website at www.mencap.org.uk/ families or call the Learning Disability Helpline on 0808 808 1111