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What now?

My eldest son was involved in a serious motorcycle accident and consequently had a stroke. He’s due home soon and I will be his main carer. My question is; I will have to leave work as he’s severely disabled, what am I entitled to ? The information on the government sites is so confusing. Which is the best route to go down? Thanks

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so sorry love for son and you this is the best site to in the world to post questions on about government sites if you post questions we will all be here

for you and the best people to talk to are helpline angels or email them hug eddie x

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Thanks Eddie

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So sorry to hear about your son.I found Carers First a very good starting point 're benefits.I had to give up work to care for my husband.I spoke to someone there and they talked me through what to apply for.Good luck.x

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Thanks for the advice, I’ll get onto them.

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what do you mean by severely disabled? before he is due to be discharged, you need to discuss with the team what care package will be put in place ( make sure its in place before he comes home ) with his social worker. he / she will be able to make any alterations to your home, ramp up to the front door, grab rails, bath hoist.

your son will need to be assessed for both pip and esa. initially his esa will be assessed on the amount of national insurance he has paid over the last 2 years and if he qualifies he will be paid at the lower rate until he is assessed. this will require you to send in sick notes until your son has been assessed.

good luck

steve x

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Thanks. He’s lost the use of his whole left side.

Hospital are looking to discharge ASAP, he hasn’t had a social worker allocated yet, they can’t decide which council will be looking after him.

Discharge staff said what changes need to be made but said they don’t provide anything and we will have to source it all.

We’ve been told not to worry about the care package!!

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Hospital wanted to discharge my hubby asap without things in place. It was not good. You should be on them to help line things up, it's their job! Maybe a temporary nursing facility stay, thats where my hubby is and they are getting him therapy and helping me find resources to help get him home. Its a transition. I had him home and couldnt meet his needs and had to get him to a nursing home. That killed me, once hes home it should be for good. Not backwards like we did.

Best of luck

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Oh dear, this what I’m afraid of too. I hope you get him home under better care soon.

Hospital are saying he’s fed up and they fear he will discharge himself... really how far could he get given he can’t walk! Apparently if he did he wouldn’t be allowed back on the ward! Surely that’s not true???!!!

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I got guardianship. Maybe thats a route for you.

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What does that entail? I’m just so confused and every avenue seems blocked.

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In our case, hubby was vegetative at the time. But you have to file with court, they assessed my hubby and i went in front of the judge. There are fees. It may not work for you if your son has no cognitive issues to make his own decisions. However, the hospital should get him a social worker or case manager

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you have a right to refuse to have him home until the hospital social worker has assessed his needs.

if he is coming home to you then it will be down to your adult services to provide any care and adapatations to your home.

you say he has lost the use of his left side, is that his hands and hes unable to walk? what about speach.

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Adult service? How do I access that,will the social worker help with that kind of thing? The discharge team said it depends on which council decides he’s their responsibility.

His arm is completely useless, he doesn’t feel/acknowledge it. His left eye has limited sight, his left side of his face doesn’t show much movement, his neck is very painful and stiff, he can move his left leg slightly forward but not backwards or bend the knee unless you move it for him. He has liver damage and no pulse in both feet which is yet to be treated by vascular team. He has some problems piecing information together ie he knows he’s in hospital and it’s his birthday (20/12) but can’t see why we questioned the party he was organising and telling his friends he was having at his old residence! When it’s been explained he remembers until the next time!!

He’s desperate to leave hospital but I fear he thinks once he’s home everything will be as it was.

I’ve been told cheshire east council won’t supply much support?!

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hang in there, its hard but better this way, at least youve got some leverage, once he s home they can run you around in circles.

it will be up to the hospital social worker to sort a care package out for your son prior to his discharge from hospital.

adult services can be contacted through your local council and will make any adaptions your son needs free of charge. you just phone your council and ask for adult services.

steve x

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That’s fab information, many thanks. I’ll be onto them tomorrow 😁

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i get it now. where you son lives is a different borough to you and hes coming back to you? tricky.

with regards to the party be careful of noise levels and make sure hes not crowded by his friends all at once. i have a problem with noise and crowds and if i cant get away, i can become aggressive, but fortunately my wife tends to steer me away from those situations.

youll also find your son becomes fatigued very easily, that is different from being tired, if he wants to have a knap so be it.

steve x

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Yes he definitely gets fatigued easily. We took him to Pizza Hut yesterday(first outing in 6 months)the noise and lights affected him and he was sick. The trouble is he thinks he’s fine and wants to carry on as he was before the accident. Once he got back to hospital he was totally bushed. He was fast asleep throughout this afternoons visit!

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how did the lights affect him? did it make him dizzy? did you tell the staff he was sick?

that happened to me in bright sunlight, it just came on and everything would spin, eventually i got rid of that but developed epilepsy. ithink it was called minieres disease, horrible really dibilitating.

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Oh no, sounds like you’ve had a hard time of it.

We just got on with it and tried to sort him out. He slept for a whole day after.

He’s allowed out for tomorrow, I’m super excited and I don’t think he’ll sleep a wink! It’s the best pressie Santa could bring xx

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sounds about right. merry xmas

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If your husband qualifies for the Daily Living element of PIP, you can claim Carers Allowance (CA), providing you're giving a minimum of 35 hours care per week.

This may allow your husband to claim Income Based ESA, PIP and CA income actually increases the amount of benefit you may receive from Income Based benefits.

Alternatively you may be able to make a joint claim, with you as the claimant, for Income Support, the advantage of this is that your husband would not need to be assessed for ESA.

The potential barrier to means tested benefits is a capital limit of £16,000.

If you're in a Universal Credit area the same basis principles apply to a Universal Credit claim.

You will need advice based on your personal circumstances to identify if you qualify and who should make the claim for benefit.

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Thanks, it’s my son in my case.

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Sorry about that so E.S.A./U.C. & PIP for your son & C.A., Income Support/U. C. for you, may be possible.

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read it!!! its her son.

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That's rather harsh, you need to make an allowance for my fatigue.

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I appreciate all your advice and help, many thanks😊

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Before my husband came home after his stroke I had a home visit from therapist to see what if any adaptations where needed for him. We had already installed a down stairs loo and walk in shower for him during his stay in hospital. Age concern (as it was then ) came and fitted grab rails and extra handrail on the stairs as well as new smoke and carbon monoxide alarms. This was a free but we made a donation to cover cost. Before he was allowed out permanently he came home for one day from 10 til 4 and two weeks,later for an over night stay . It was only after these trial periods was he allowed home full time. He was supplied with all necessary aids (except wheel chair) by the council. (Perching stool, shower stool and commode etc.) He had carers come in for 6weeks to help wash, dress and shower him and 6 weeks of physio at home. Stroke nurse's visited for 6 weeks.

This was 7 years ago and he has made progress but it has now seemed to have stopped.

But on the brightside he is still with us and we have a granddaughter who he loves dearly even though he can't always communicate very well with her (another side effect of the stroke.)

Hope you are able to get all the help you need.

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Thanks and yes, fingers crossed.

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