Stopping Caring
Most parents get to seperate from their kids by degrees. in her first column for Able magazine, Jane Muir – the solo carer for her severely diabled son - explains how the separation for her came “suddenly, and not a little painfully”.
My son is 17, and has just left home to go to one of the country’s very few residential colleges for young physically disabled people. It was a move that both of us had yearned for – and yet dreaded at the same time.
The year leading up to his departure was fraught with emotion. Then the time came; one day I was doing everything for two – teeth brushing, dressing, showering, toileting – and the next I had hours, days, weeks, just to myself. The change seemed overwhelming.
I’d decided it was best to fetch my son home the first few weekends – to iron out any problems, to ease him in gently and familiarise myself a little with the college ambience. Also, I knew he wouldn’t be able to communicate with anyone very easily at the beginning, so might need a good long chat. Indeed, during the first week he phoned me and deciphering his unclear speech between the sobs needed the most extraordinary concentration, especially as I was standing in the middle of Boots at the time! By the end of the phone call, though, he had cheered up.
Yet when I collected him that first Friday, he was bursting with news and a newfound confidence. After the second week, he complained he’d miss out on the evening’s fish and chips and a disco. On the third Friday, delayed by a steam roller, I arrived late to find he’d gone in to have supper without me. “I went to the bar and ordered a drink on my own with no help!” he told me, bursting with pride.
Suddenly he had separated, finding a social life I couldn’t provide for him at home. Not only that, but he’s learning – his timetable includes art, swimming, music and money management – and he has teams of speech and physiotherapists to look after his every need. Alistair phoned me just once last week, to ask how I was and to reassure me. “It’s alright, Mum, I don’t need you,” he said. I laughed, and felt a little wrench inside.
It’s weird going to sleep without the sound of his breathing down the monitor at my bedside. It is so strange and exiting to be able to go out any time of day or night without the difficulties of having to arrange carers. I can’t say that the anxiety has entirely gone, but some of it now is about myself. What do I do now?
If you don’t count holidays I have possibly up to three years of relative freedom ahead of me. Friends in far flung places tempt me with the idea of visiting them. There’s the question of money, of course. I applied for a “Return to Teaching” course, but it has been deferred to the New Year and, anyway, I’m wondering if that’s what I still want to do, having now seen the underside of an education system that often fails kids with special needs.
I also wonder how trapped I am by the benefit system. College holidays will mean a return to full time unpaid caring, so I can only really consider part-time freelance work. Any money I earn at the moment will come straight off my benefits, so it won’t really feel like earning. Only if I earned a serious amount would I be able to renounce benefits altogether and even then I would have to re-apply every time the holidays come round. I have spoken to a helpful man at Carers UK only to feel completely daunted by the complexities of the system.
However, I am optimistic. The stress and relentless physical exertion of years of caring seems to have magically lifted, and for the time being at least, I float in a cloud of newfound energy and exhilaration.








