Caring for teenager

For issues related to specific conditions and disabilities.
Dear Eun,

I was stunned to read how much you would have to find for ILF.Our son has to pay £4 a week from his care component and Incapacity, and I begrudge that.
In our county, Pembrokeshire, West Wales,everyone accessing respite care has to hand over all of their incapacity benefit and all of the care component of DLA for the time they are in respite.

I hope that someone on this site can help you and give you more practical advice than me.
dearest Lazydaisy
Don't think for one minute that your advice isn't appreciated and gratefully received. I sound like a right moaning old sod in my posting don't I?

Didn't mean to come across as such. I am so shocked that your area makes poeople give up their incapacity benefit and DLA like that - it's like you are being penalised for the "pleasure" of being disabled isn't it.

The thing I also disagree with is the withdrawal of CA when the cared for person is in hospital.

When my son was in hospital we had to go up to the hospital for 6am to get him out of bed (the nurses claimed he was too disabled for them to deal with) and we didn't get to leave until around midnight. When he had his spinal fusion my husband took 2 weeks off work and we alternated the care in the hospital one night on and one night off.

Yet they can say that you are no longer caring since the person is in hospital? What a load of bull.

Its all right I am not really looking for advice - I suppose I was just having a moan and letting people know what its like up here in Scotland. You hear all this stuff about free personal care etc - believe me it is a load of baloney.

Keep on fighting

Moan away! Im a champion believe me, and when things get really bad im a great believer in a good cry. Your poor hubby is probably of the stiff upper lip type and keeps it all bottled up,have a good shout and scream every so often! After a while I dust myself down and come up fighting.

As for the hospital i know just what you mean now my son is 16 hes only allowed 4 weeks in hospital (12 for kids) and its something I really worry about. We also spend our time looking after him in hospital,he has had a number of fractures by being handled wrong in hospital and again I worry if he is in an adult ward will they let me stay? I have no intentions of waiting til they break something before they hand over his care!

I hope you get a little relief from venting on here.
Dear Lazydaisy
Tried to reply to your private email but couldn't get it to work properly so will try to answer here.

There is no physical disability nurse for adults in Scotland as far as I know.

Now that R is an adult he attends different hospitals to see different consultants (eg cardiology, respiratory and neurology (also physio but that hospital has been closed down and R's physio has stopped). I also attend the same hospitals to see the same consultants for my own MD so that doubles the amount of hospital visits.

We all have to go because the parking is a nightmare at most of the hospitals, so my husband has to drop R and I off and then drive round and round the car park trying to find a space for our wheelchair adapted van - musical chairs without the music!

During R's last two chest infections the Gp said that he would be better off at home than in the hospital as we would give him better care. In saying that the respiratory consultant came out to the house with a cough assist machine which really helped - its a big beast of a machine but it certainly cleared his chest!

I'm just glad that our son has us - I dread to think what sort of treatment he would receive if he hadn't. All the best
Eun xx