Can we get financial Help?

Indie_Kid

Would it be worth giving up work and one of you claim carers allowance?

nilla

My daughter is 17 and has Downs Syndrome, I hope my eldest daughter will be as caring as you are when I get older and am still a carer for my daughter with Downs, I wish you all the best and hope your brother is soon home with his loving family

Errata

HTH - your brother will need a very carefully designed hospital discharge plan, which will reflect the help he will need and what will be available to him and who will give it when he's discharged. Family members can be involved in drawing up the plan if the patient has a learning disability.
I think you need to make the discharge team and social workers completely aware of his home situation: for instance, should your sis give up work to look after him (and your mum), what will happen during the night if your mum wanders outside again and only your brother is with her) I'm assuming she won't be able to move in with them and sorry if I've got that wrong.
Hope he starts to improve and your mum becomes a bit calmer.

sheilavw

Just to update everyone. My Brother finally moved Off Critical Care yesterday. It has been a long journey. We have someone coming to my house on Monday about care. I successfully claimed day/night attendance allowance for my Mum and a bit of Income support for my brother who currently gets lower rate disability. If we could get Carers for Mum and a bit of Direct Payments for my brother my sister could give up work, she lives 2 mins walk away so could go round do breakfast, take them out, make cooked teas, do housework. I work in school and I drive so we could have outings in the car during school hols. The problem is the guy I spoke to says its very difficult to get money for family. My Mum wouldnt have strangers in. Surely it would make sense to let my sister do it. We cant go on the way we have, my Brother has suffered.

Newly_retired

It is not difficult to get carer's allowance once someone has been awarded Attendance Allowance higher rate.
Social services should give the proper assessment for the full situation. Depending on where you live, you ought to get some help from them.

sheilavw

Thanks for that. As I said in earlier post moved off critical care yesterday on oxygen and catheter. Went today as neither now. Critical care doctor came to see him, said chest is slightly wheezy and she would come and see him in 48 hrs and check him again. 10 mins later another doctor came and listened and said well when do you want to take him home? All seems sudden, nothing sorted re care yet, although no probs obtaining sick note from GP but need permanent arrangement

Starrystarrynight

OP, I just wanted to say that you and your sister, and the care you provide, sound wonderful :-)

sheilavw

Thank you, its been hard, we have practically lived at the hospital which is 20/25 mins away for the last month. Its been such a worry, his panic attacks were awful, they said it would be a rollercoaster ride but nothing could have prepared us for it, hes now on 3rd infection. We are looking forward to having him home. I need to get back to work and my Sister will look at giving up her job. Of course I will still help, with working in school and having a car I can continue taking my mum and brother out. Just hope we can get enough financial support to be able to do this, she cant do it without some money and it makes sense to pay her rather than a stranger. Up to now got the attendance day and night and also was awarded a bit of income support for my brother which can go in the pot.

Indie_Kid

sheilavw wrote: »

my Sister will look at giving up her job. Of course I will still help, with working in school and having a car I can continue taking my mum and brother out.

You both (or at least your sister) will be entitled to a carers assessment from social services.

You both sound wonderful.:)

morledge142

i was in a similar situation with my family 2 years ago so heres how it worked for me and make sure you think it through.

1, my sister had ld and amputee. ss assessed her and she got direct payments of 18 per week and i became her support worker.

2. she had hrm so she got a car and as i lived an hours drive away and she could not drive i was allowed to use it ft to care for her going up 3 days per week and getting shopping perscriptions.

a year down the line the niggles set in. as you i had spent every day at the hospitable for 3 months when she was in intensive care, she came and rehabiliated with me for a couple of months then when back home to live with my mum who i also had disabled brother at home.

when back home i went up as said so was trying to please eveyone my mother, brither and of course sister. as my sister has ld it was hard to her to see this and if we needed shopping etc she started to get silly saying she did not want to go or telling people where to sit in her car.

a year down the line i had a car crash and was immobile myself for a bit so i decided to give it up or it wwas not worth claiming the money in the end as it became my money i can tell you what to do which in fairness it was as soscial services kept telling her but with anyone else it would have been unreasonable behaiovur. also everytime we went up she started to say she did not want us to leave yet as it was her car.

sound petty now but unfortunabley i got paid but begrudged that my sister did not understand how much i had done for her over last 2 years and how we had ran round in our oxn car for ayear before she got hers and our family had done without as i was up there 3 days per week. also the money we spent then she started to behave like she owned me but i had spent thougsantd getting trains rides daily when she had been in hospitable the year before.

anyways i stopped caring for her and social srvices reassed her so now she got rid of car and is in day care. she gets driven to private nursing home 3 days per week and sits there in front of tv bored and gets taken out once a week. they are onto a good thing these places.

and car went back so as she wanted it sitting outside the house so i could not get there to care for her.

anyways ss have a very narrow approach and have to do what is best for individual i know but do not look at how it affects a whole family such as my mum and brother.

anyway my brother died last year and my sister is at daycare so my mum is old and loney at home 3 days a week now but ss think my sister is happy and they have give themselves a big pat ont he back job done and closed teh case for now.

oh and the daycare are that not as ss promised a replacement for me so all her meds and doctors appointments are messed up as there is no on e to take repsonbility .

i live an hour awya and have no car now since crash so am as worried as every and no strain taken from me as ss promised.

so be careful what you wish for they step in but think abbout the bigger picture.

ask for direct payments as they can assess for this and your sister can receive the m oney it is about $7 an hour we got 18 houras as mentioned but then the family got a bit messed up as my sister did not have mental capaity to handle the decision making. when she wss in intensive care originally ill i could have got ward of court or whatever to manage her affairs but i didnt shes my big sister i didnt she here as disabled or ld she has alswys jsut be sis, but now i see she cannot look from family perspective and see what was being done for her.

this is not meant to be a downer but a situation arose that i would have never imagined.