Wednesday, June 30, 2010

Elderly Carers: How will the state cope when they are gone?


"I can look after him if I live longer than he does. I will know he is all right," she says. "I think a lot about afterwards, what's going to happen, if that isn't the case. I hope he can stay here if somebody comes in to look after him." Urmila Patel.

 The Samuel's of this country and their elderly carer's are amongst the most vulnerable in our society. With the radical cuts David Cameron, George Osbourne and Iain Duncan Smith are making to the benefits system supporting disabled people and their carers, BSS wants to know what will happen to all our Samuel's as their parents become too infirm to care for them? 

Reposted from 26/02/2009 

Dear Samuel, 

Reading about Ivan has reminded me of how lucky I was to meet you. It's been five years now and I know your Mum still misses you every moment of every day. I wasn't privileged enough to meet you until near the end of your life. A life which touched any it came into contact with, lighting them with love and deepening with understanding.

You were a beautiful, healthy baby boy, born with no sign of the incredible life you'd come to lead. When you were six weeks old you fell ill. What initially appeared to be the kind of childhood illness my generation has forgotten ever existed, rapidly became showed itself to be more serious. There was deep snow that year, and despite increasingly frantic phone calls from your mother the doctor refused to come out to you, instead he chastised her for being an over anxious new mum. Even now, when she's having a bad day your Mum blames herself for not having dug through the drifted snow to get to the car and take you to hospital herself. You were seizing by then though, and vomiting so violently and constantly she fought for hours to keep you upright and breathing. Just you, her and your three year old brother.

Eventually when your grandmother phoned the doctors they agreed to send someone out. By then you were so very ill the roads were closed and a police escort provided to take you to a specialist children's hospital. There they battled and saved your life but hours without sufficient oxygen permanently damaged your brain. No-one complained back then so the doctor who'd refused to see you was quietly sent away and nothing more ever said.

After that life was irrevocably changed. Benefits and care packages were almost unheard of back then, so your Mum and Dad just got on with it. Even when both your grandparents fell ill and your Mum had to nurse them. Even when your Dad got cancer. Even when your Mum found she had cancer too. At the same time as your Dad. They just got through it. They'd learned from an expert.

When I met you you were already dying. In terrible pain you endured thousands of medical procedures throughout your life. No matter how painful the procedure you had to go through, without fail you would tell the doctors and nurses you were sorry. And ask for a kiss to make it better. You always got your kisses.

You changed the world Sam. Your Mum was so appalled by the way the medical profession treated people with intellectual disabilities that she somehow found the energy to force through changes. You were far too busy making people laugh to worry about that though, you had a chortle so infectious it would catch people outdoors and complete strangers would find themselves joining in. Many a Christmas dinner was had with an extra place laid for Mr Blobby, you so loved big, bright inflatable toys. There was even a blow up alien on your coffin. The chapel was too small for everyone to get inside so people spilled out the doors, filling the air with laughter as we all sang 'Always look on the bright side of life'

You did exactly that. You'd be nearly 50 now and none of us who met you will ever forget that no matter what you had to put up with kisses always made it better.





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