Jane Holmes: Who cares for the carers?

What happens when the carer becomes ill?

By Jane Holmes
November 12, 2012

Jane Holmes is chief executive of Wokingham-based charity Building for the Future which provides support and activities for disabled children.

She set up the charity after her daughter Kitty was born with severe cerebral palsy.

Yesterday, I was talking to a single mum of a disabled adult about respite provision.

My friend, whose beautiful young adult daughter has the developmental age of a baby, has found herself having to fight to get the help they need.

Of course she’s been through this once, when her daughter was a child, but the whole process starts anew at age eighteen.

What would you do if your adult child needed more care than the average baby? Just imagine it for a moment. And let’s not be complacent … all of our kids are just one car crash away ..

What would you need? You would need breaks – that’s need, not want – but to have those breaks, you would need to be certain that your child was safe. It’s irrelevant how old they are in years, it’s the level of care that matters. A person needing that care just needs it, full stop. Disabled people don’t stop needing help just because it’s expensive. Believe me, as parents, we wish they did, but they don’t.

Parents of very disabled children are chronically exhausted. My friend’s daughter is severely epileptic and by that I mean she has literally thousands of seizures every month. My friend is incredibly strong and never complains, but she admits she exists on a different plane to those of us lucky enough to enjoy a regular, full night’s sleep.

So how does this mum find the energy to engage in the necessary fight to get the level of care her daughter needs? The care she needs to ensure her daughter is safe and fulfilled. Remember, that’s needs not wants.

There appears to be a huge discrepancy between provision for disabled people and it feels like the those with time and energy to fight get the best package. The exhausted ones who care for the most severely disabled have to take what they can get and very often it isn’t enough.

But imagine this … what would happen if these carers became ill or died? Who would look after these disabled people then? And how much would it cost?

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