Liz: My name’s Liz Feeny and I am a carer for Sarah who has Downs Syndrome. I have been a carer for 21 years.

As a carer, the move towards independence is really difficult as the carer because you have got to trust that the young person will go off and do it without you panicking and standing round the corner …. her moves to independence have been quite slow, but if you look back they’ve actually been quite momentous achievements. We feel pretty proud of the fact that she has made these moves.

My husband and I have been using direct payments for some years and paying people to come and either take Sarah out for the day or stay in the house with her. But since Direct payments can now be used to pay members of the family that don’t live at home anymore, we’ve been able to go on holiday or go away for weekends and pay our son and his girlfriend/wife to look after her and know that she is safe so that’s been a massive bonus and a big way of us getting some more time together.

Sarah has a great time because they are much nearer to her age. They go off and do things that we probably wouldn’t do, things like going to theme parks, the cinema and also go out shopping. And she just is in a different atmosphere and a different way of life and I think she really does enjoy it.

It’s really important to just have time together otherwise you feel like you’re always the mum, or always the carer, you never get time to just be you or do things that you would like to do for yourself, rather than worrying about what will happen to the third person where they will be, who’ll looking after them, and quite often they don’t want to come along with you to do the things that you want to do, therefore it’s been really good and has made a big difference to us.
The day she started work I had a good cry because I was so proud that she had done it, and also the first day that she just went and came back by taxi, it was very difficult to not just stand at the gate and check your watch. She’s done it, and she does it every day.

My ideal relaxation, and being by myself, and getting myself back on a level, is just pottering in the garden and that just brings me back down to earth again and I can get on with the next day. top