Coping with disability in the family: who cares for the carers?
People who selflessly give their time to look after family members in need of help can often find themselves wanting a little assistance themselves, as Stephen Oryszczuk reports
Susan Dawson’s son Ben is 19 years of age, but developmentally is more akin to an 18-month-old child “or a two-year-old on good days”.
Ben lives in Finchley and has quadriplegic cerebral palsy. Registered blind and with severe learning difficulties, he cannot see or speak, but is still very much part of the Dawson family.
Last week was an important one. Ben moved out of the family home and into supported housing with two other young Jewish men with disabilities.
It marked a milestone in Susan’s care for him. “He’s a triplet, and his two sisters are off doing what 19-year-old girls do, about to go to university in September, but I never thought Ben would be the first to leave the house,” says his mother.
All parents of young children are carers, of course, but Susan and her husband Robin have had more to deal with than most. They are the people Jewish communal organisations had in mind during last week’s Carers Week.
Having spent more than a decade as a full-time carer for Ben, Susan recalls how support in the early days was vital.
“We took him to a facility that catered for kids with disabilities,” she says. “Staff would care for Ben and play with him while the parents got together to talk about what we were going through and how we were coping.
“They let us think these were therapy sessions for the kids, but they were actually therapy sessions for us!”
She remembers “lots of tears and tissues” and said the parents “became one big family”, sharing experiences and becoming more knowledgeable and aware in the process.
“It was the making of us as a family,” Susan says. “It made me realise you have to stay sane. You have to have breaks. Disability can overcome a family. I’ve seen it happen.
“You end up not being able to look after yourself, let alone the vulnerable family member who needs you. You need the respite and support.”
As I listen to Susan, I begin to think about Czech-born Judy Barnet, 73, whose husband Michael, 75, has advanced dementia and with whom I had met a few days earlier. An ex-cabbie, Michael was fine before he went for a heart bypass in 2005 but emerged “a different person”, Judy says.
Over 45 heart-breaking minutes – and in the only hour of the day she has to herself before picking up the grandkids from school and collecting Michael from day-care – Judy explains how his condition became worse.
“The nurses called me in the middle of the night, saying he was shouting and being disruptive,” she says. “I went there. He was very confused, and when he came back the next day he couldn’t find the toilet in our house, which had been our home for 25 years.
“Later, he began leaving the TV on for ‘the others’… There were no others.”
Over the next few years, Michael’s cognition and memory deteriorated, and experts now say he needs two carers 24/7. Judy found him a place in a nursing home on their advice, but says the experience was a terrible one.
“They didn’t seem to have enough staff,” she recalls. “He lost a stone in weight, and began to lean badly to the left. His body was just shutting down before my eyes. I had to take him out.”
She did, and went back to being a full-time carer, in between caring for her grandchildren, who “make a fuss of their grandfather, who seems to respond”. But with Michael now taking more than an hour to shower and dress in the morning, Judy admits it is starting to get too much again, even with help from Redbridge Council and Jewish Care.
“He gets horrendous nightmares, where he’s screaming, so I have no sleep,” she says. “Most of the time he doesn’t recognise me. I talk to him. He talks back, but he makes no sense.
“People say they understand but they don’t. It sucks you in. Everything you did together, suddenly you’re doing on your own. I don’t go out now; when a carer finally comes to take over, I’m too tired even to smile, let alone get dressed.”
When I ask about the idea of Michael going back into a home, Judy flinches at the thought of what would seem to others to be the only viable solution.
“I think it’s got something to do with my Jewish values,” she explains. “Family is everything. Growing up, we would never even have considered putting a family member in a home.”
She shudders. Judy and Susan are but two examples of community members struggling in a world we rarely see, a world of full-time caring responsibilities. The Jewish community’s record of caring for those less able to care for themselves is a source of pride and rightly so.
Visit the accommodation blocks or the special housing units for the elderly, or those with learning difficulties, or physical disabilities, and all this becomes clear.
Perhaps the good work of carers shouldn’t surprise us: a key tenet of Judaism is to help the less advantaged. But what many of us think of as ‘care’ is what comes after someone has had to leave their own home. What comes before is seldom recognised.
The idea that caring is second nature to many in the community in part explains why groups now worry there are carers who don’t consider themselves as such, and therefore miss out on the services and support available.
“The very nature of caring means very often people don’t at first, or sometimes ever, identify themselves as carers,” says a Jewish Care spokeswoman. “Rather, they think of themselves simply as wife, husband, son, daughter, mum, dad or perhaps grandparent, niece or nephew helping a loved one.”
A major survey of the Jewish community published in January by the Institute for Jewish Policy Research (JPR) showed one in five British Jews look after a close relative with a long-term health condition or disability, and more than half spend at least half a day every week doing so.
With changing demographics, the future of the community is now even more dependent on supporting people like Susan and Judy through innovative, personalised solutions.
In short, we need to get better at helping those who help others – the dedicated people whose every day is mitzvah day.
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