Tag Archives: epilepsy

Carers are the best kind of people. So why are they treated so disgracefully?

My brother’s carer had to leave, her minimum wage not enough to survive on. My brother is heartbroken. I’m furious

The Guardian,

Swimming carer

‘There is no training course in the world that can truly prepare you for becoming a carer: it’s something you either have or you don’t.’ Photograph: Gary Calton

We lost someone important to us this weekend. My mum rang me, crying from a hotel room, after Megan had said goodbye, and what a shame it was. She didn’t want to go. We didn’t want her to go either.

Megan was my younger brother’s carer. His autism and epilepsy means he needs round-the-clock assistance. Megan had split up with her boyfriend, and the minimum wage she was being paid was not enough for her to live alone – so she has to go away, to live with her parents. My brother will not understand this: he will just see that she is gone, and miss her. But we understand it. Having witnessed the work of a succession of carers while I was growing up, I not only noticed what an incredible, noble thing it is to devote your time to looking after someone more vulnerable than you, but also how little society gives a toss about it.

‘Life as a carer can be a constant battle’

‘Life as a carer can be a constant battle’

Thursday, May 30, 2013

By MICHELLE CHOW

HUSBAND and wife Stuart and Helen McIntosh are a couple who truly know the meaning of the vow ‘in sickness and in health’.

While Helen suffers from epilepsy, her husband Stuart is wheelchair-bound following a fall at work.

  1. CARERS: Stuart  and Helen McIntosh. Picture: Chris Huthwaite

    CARERS: Stuart and Helen McIntosh. Picture: Chris Huthwaite

The Newcastle couple are not only carers for each other but also help to take care of their two sons, who have disorders on the Autism spectrum.

Now they have both been nominated for the Sentinel’s Our Heroes Awards in the Adult Carer of the Year category.

Stuart, aged 48, of Seabridge Lane, said: “I was working as a production manager for a pottery firm about 20 years ago when I fell and severely damaged my ankle.

“Because I couldn’t stand up for long periods, I got a job as a bus driver.

“However, in the end, I had to leave my job to look after Helen and the boys.

“Now, I help to look after her and she helps to look after me.

Who will care for the disabled in years to come?

Who will care for the disabled in years to come?

Sunday 7 April 2013

 

WHO really cares about the future of our children and young adults who have profound learning disabilities as a consequence of severe epilepsy?

In Scotland, there are approximately 1,000 children and young adults under the age of 25 whose cognitive abilities are limited by the early onset of complex epilepsy in infancy. Most of these young people will have lifelong learning disabilities that will prevent them ever living independently, requiring round- the-clock care for the rest of their lives.

In childhood, naturally parents to want to care for their child with epilepsy. But as the complexities of the condition emerge and the damage of those early life seizures take their toll, parents begin to struggle. The family life they had hoped to enjoy as they raise their child (or children) slowly slips away from them.