Don Jones

I’m Don Jones and I’ve cared for my sister Sheila for over 15 years. Sheila was born with learning disabilities, including autism, and needs round the clock care.  My parents had cared for Sheila all their lives, but when they passed away I didn't hesitate to step in and take care of her. 

Within months of caring for Sheila  I realised I had no option but to give up work. I lost out on my pension and I used all my savings, just so I could keep Sheila at home. In a way I am a victim of the system because I simply didn’t understand how the system worked and of course no-one explains it to you. So I paid a large financial penalty for caring.”

When I first started hearing about legislation and things like direct payments I thought to myself ‘this could give my sister her life back’.  It was a long haul getting there but now Sheila’s care needs are now met through a Direct Payment and I employ a team that help support her.

Direct payments have transformed the quality of life for Sheila and for me. The thing is when I was the full time carer I couldn’t do all the things the team do for her now. I was just one person and the fact was that Sheila was in the house 85% of the time. Now she’s out everyday and if Sheila decides she wants to go out to the shops or just for a drive, then the team take her. That’s what being independent is all about. She has a new lease of life and it’s just amazing. I can’t begin to explain the difference it has made to her.

It means that I’m no longer the be all and end all of Sheila’s life. In a sense I got my sister back and I’m slowly getting my own life back. When you’re caring full time your own identity ceases to exist. Looking back I realise how invisible I became to everyone. People would ask about Sheila but no one ever asked about me. So now I’m slowly building my own life back up again.

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