It takes a really special person to care for someone 24 hours a day, seven days a week, and my mum and dad are two of these people. My sister Frances is in her 40s and has Cri du Chat syndrome and severe learning disabilities. She has difficulties with her speech, throws the most tremendous tantrums and needs barely any sleep at all.
We all love Frances dearly, but watching my parents deal with sleepless nights and Frances’s unpredictable behaviour and tantrums is gruelling, especially as my parents are getting older and have growing needs of their own. Their lives are totally given over to caring for Frances and always will be, but they need a break, just some time to relax and recharge their batteries every now and again. These are known as short breaks – not a long weekend in the country, but the time off from caring, sometimes for as little as a night a month.
It’s no surprise then that eight in 10 family carers who, like my parents, care for loved ones with a learning disability have told Mencap that they have reached a moment of emotional and physical crisis, where they feel they can’t go on, because they don’t get enough breaks. This is the same number that had reached this point 10 years ago, when Mencap launched its first Breaking Point report.
It can be easy to forget that families are not obliged to care for a family member with a learning disability, as local authorities are legally required to provide social care services for those who need them. Family carers look after someone with a learning disability out of love and concern for their wellbeing, and short breaks are a vital way of ensuring this care can continue.
The government recognised that family carers needed more short breaks and invested £1.2bn into these services for children and adults. But Mencap’s research shows that this money was not actually spent on the support that families desperately need – in fact, councils across England have cut these services. It is harrowing and completely unacceptable that people who dedicate their lives to caring for a vulnerable member of their family are not getting enough support to continue doing it.
The pressures of providing full-time care for a loved one with a learning disability can be felt throughout the whole family, as the vast majority of family carers told Mencap. This is something that I can definitely relate to. When I was younger, I vividly remember my parents taking turns to look after Frances until she fell asleep, which was (and still is) usually around 5am. As my parents got more despairing, I felt like I had to take a turn and give them a break. But every morning without fail, after endless nights of no sleep, my exhausted dad would still be ready at 5am to take me to swimming practice. It is a miracle that under such enormous stress and pressure, my mum and dad have always remained – outwardly, at least – calm and loving with Frances, with me, and most incredibly with each other.
It’s absolutely heartbreaking to see families torn apart because they’re not getting the short breaks they so desperately need. There needs to be more help out there for family carers. Mencap is asking the government to make sure that any money they invest in short breaks in the future is actually spent on these services. They are also calling on councils to make sure that they reach out early to families caring for a son or daughter with a learning disability, to ensure that no family carer is left to reach breaking point.
For many parents of children and adults with a learning disability, being a full-time carer is not only a full-time job, it’s their entire life. My mum and dad are lucky to be part of a close-knit village community, with Frances at its heart, where they benefit from the kindness and support of their neighbours and friends. But this support alone will not be enough as they grow older.
None of us quite know what will happen to Frances in the future, because she will always need round-the-clock care, but one thing that I do know is that without regular breaks from caring for Frances, my mum and dad could reach breaking point. We must act now to make sure that every family carer who needs a break, gets a break. Is that too much to ask?
Nearest tube – Elephant & Castle underground station (Northern and Bakerloo lines).
Nearest Railway Station – Elephant & Castle
Buses from Elephant and Castle – ask bus driver for Burgess Park. Bus numbers: 12, 171, 148, 176, 68, 484, 42, 40, 45