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And breath!!!!! - Carers UK Forum

And breath!!!!!

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Well, going to pick my son up from his two night break from respite (second time there). I got myself so stressed and worked up before he went I was virtually having a panic attack when I dropped him off. However, it all just melted away when I got in the car to come home, I felt such a sigh of relief. Ahhhhh and breath...... It feels odd without him at home....like something is missing..... Not just in a physical sense. Only having to think about myself is strange. After 25 years of thinking for two, acting for two, doing for two and feeling for two, it's just me for 2 nights. Of course that doesn't stop me worrying about how he's getting on at respite and how people are treating him, he can be very difficult at times.... I should know lol.
Well, off to pick him up soon, see what antics he's been up to.

Btw, did I say it's costing £108 a night PLUS £10 'spending money' all from his meagre benefits No wonder I'm having panic attacks... Bloody government cuts.
Hi Lesley,
Well done, I nearly had a total nervous breakdown the first time M had respite, even when it was only 8 miles away from home at a farm study centre, so if anything happened I could be there in minutes! Try to do something for yourself while he's away, even if it's just a long soak in bubbles. I'm concerned that you have had to pay. Are you certain that he is getting all the benefits that he's entitled to. Social Services should be funding this essential service - I understand they are using the excuse of cuts, but "critical" services cannot be cut without reassessment. If he is 25, then I hope you have been claiming income support etc.? If in any doubt at all, ring our Carers UK helpline so they can go through everything with you.
Thanks for your reply.

I have severe rheumatoid arthritis so two days of 'no son' was pure luxury lol. Just doing and thinking for me and not two was emotionally and physically 'enlightening', oh how the other half live.... Lol.
My daughter and I, well daughter, mucked the house out, so today we are going to pick son up and I'm treating them to lunch out.
Re cost of respite, long story but yes indeed, it is correct I've questioned it plenty.

Two weeks respite, (asked for 4 but was turned down) and 6 hours pa (weekly) although haven't got a pa yet. They won't let (pay) my daughter (aged 19) even though she does in now for nothing, she knows him better than anyone else as he has complex needs and she is probably more suitable to take him out than a 'stranger'.
Tbh I am sick and tired of fighting for everything, I think we learn to struggle on as we just haven't got the will or the strength anymore. I'm sooo tired.

I have just decided however that I am going to appeal and ask for maybe 6 weeks respite (as they will reduce it so I might get 4). If not I may even 'threaten' to 'put him in care as I can't cope.'
I'll keep you informed.

Lesley