Stopping Caring

It is now nearing the end of my son’s first year at a residential college for students with physical disabilities. To my intense relief, after various anxieties and hiccups, he is happy – and so am I. Although our lives are still intertwined, we also have some new independence from each other, and I hope that is how it will stay from now on. I have realised that my mother/carer role has turned into more of a ‘managerial’ one – still carrying many of the same frustrations and demands, but none the less giving me breathing space and letting me explore a new way of life for myself after all these years of care.

While Alistair learns to plan his free evenings and weekends, socialise independently and make choices about living arrangements, I have had time to convalesce from long needed surgery, build a new social life, and finish my secondary school ‘placement’ as the final part of a five month ‘Return to Teaching’ course.

Our main problems these last few months have been the reluctance of the Learning Skills Council to fund a new communication aid, and the ineptitude of the NHS in cobbling together a power chair that does not twist and turn and fall to pieces at the first sound of a disco beat.

I drive to and from the college regularly to sort these things out (or for review meetings and visits) but staff are supportive and welcoming at all times. Seeing Alistair proud as punch to be wearing a brashly coloured t-shirt that he bought for himself, by himself, in town, makes it all worthwhile. My spirits are even lifted by his romantic entanglements, because at home, same age friends were a problem I could never seem to solve.

So far, college vacations have lasted an average of ten to fifteen days, but the long summer break is coming up, which will be seven long weeks. Now that Alistair has transitioned to adult services, we have generous enough direct payments to employ our own carers to ensure I don’t get as worn out as I used to be during the school holidays.

Employing carers independently is not completely straightforward. We rejected the agency route when we were told that two carers would need to be present for hoisting – completely impractical, given our circumstances, as well as expensive and intrusive.  Health and Safety regulations haunt us forever; I’m beginning to wonder just who exactly makes up these rules, and whether they have any idea how much it costs us – practically, emotionally and financially – for them to protect their backs.

A locally placed advert asking for young male applicants as summer carer/companion resulted in us getting 50% girls and 30% non-English speakers, which could be a problem for Alistair as his speech is hard to decipher. We’ve whittled the remainder down to three; personally, I’m hoping that Alistair chooses the chef with the sexy French accent, but I’m also open-minded about the school leaver who has spent two summers volunteering at Vitalise (the UK charity providing short breaks, respite care, holidays and other services for disabled people) and needs to raise funds to support himself while at Uni. I’m just not sure that he will be insured to drive our van. Then there’s the 23 year old unemployed mechanical engineer who says he would welcome a challenge – the recession does have its upside!

As for my worries about what will happen after college, I’ve stopped panicking – at least temporarily. I found out by chance that we have a Scope regional support manager who has promised some advice, and also Alistair’s Personal Learning Mentor at college has arranged a meeting to go over the options. I am well aware that provision is poor in options, with many students just simply being sent home again – further education colleges have no specific statutory responsibilities to facilitate the post-college transition process. Even were we to find an ideal way forward, securing funding for that will inevitably be the next emotionally draining battle in our lives.

For now, though, roll on the summer holidays, and then roll on renewed autumn freedom. It has taken me a year to find a balance between stopping caring, caring some of the time and not caring at all, but I think I am just about there.