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Coping Long Term - Carers UK Forum

Coping Long Term

Share your ideas about the practical side of caring.
Hi everyone,

I wondered what tips and strategies you all have for coping in the long term?

I seem to have fallen apart recently. I think the enormity of 'he's never going to get better' has finally hit home. Although he's only 12 I am aware that getting support for adults is extremely difficult and complex in a lot of cases and I've started thinking about what to do when he's older. I've taught him at home since he was five as he couldn't cope with school, but I'm so exhausted he's going to have to go to school at some point so there's the whole school battle coming up, plus we're gearing up for assessments with the NHS for the first time in six years. Last time around I was accused of having MSBP and fabricating his condition (although I was also accused of causing it through neglect and emotional abuse; I'm not sure how you can create a condition and pretend it exists quite at the same time but there we are). It was the most colossal, heinous battle (and none of their claims were true, I hasten to add) and I really did experience some quite depraved people within the public sector. I know they're not all like that but it really did a lot of damage (even though I won) and to this day it's something that I find very frightening. So the thought of having to get back into the system is troubling me, I have to say.

So .......... I'm quite well up on contacts, groups, finding information and hitting the internet to find out what I need. I can write my own reports, file complaints if necessary and probably know more about ASD than a lot of doctors now (which isn't to say I know a huge amount, just that a lot of them seem to know very little).

But, I wanted to ask, how do you cope emotionally? I feel so lost and alone with so much of this. I can cope with the long hours and the practical stuff, I can handle it all on an intellectual level. But I find the emotional stuff really hard. I feel like 'the system' simply sees him as a burden, a drain on finances to push back and forth between agencies and try and do as little as possible for. When he was younger they treated me like I was making a fuss about my pet hamster. He's my boy. If I start thinking about all the stuff he can't do and all the help he's likely to need when he's older it breaks my heart. But of course, you have to think about it all in order to get things done and get the help put in place. So I was wondering if anyone has any tips for getting through it all without collapsing in a big soggy heap on the floor (not too often anyway!).

Thank you. Sorry for the moany post.
It might be 25 years ago, but I can still remember how traumatised I was after a battle with education that went on for years. I found an organisation called IPSEA, who supported me throughout. Google them for more information. Obviously, it was a long time ago, and things may have changed, but they were my saviours. Accept that it's going to be a battle and protect yourself as much as possible. Finding a bit of "me" time to distress, a walk, swim, coffee, anything you can possibly think of which will help. Think of where you would like him to go, and see if that school can give you any support through your application process. The special school my son went to was a "Camphill" school, and they supported people when trying to get funding. I do hope it works out for you. Accepting that I could no longer care for M full time was traumatic, but I decided that the next best thing was being 100% supportive as he made the move to boarding school, and other later placements.