Im wondering where i can go to find out if there is any financial support/relief available? Current situation is now that husband has deteriorated a lot since last september and is back on the transplant list, this time his prognosis is much worse.He is largely unable to work, but because it is his own business, its more complicated than usual. But as a result of his illness we are really feeling the pinch. I can't work either as i need to be around for him, and probably biggest help i can be is support him to keep the business from sinking.
Ewife
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Ewife
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Contact Citizen's Advice Bureau, they should sit down with you and go through your circumstances to ascertain what you may be able to claim. Is he on Personal independence Payment? You'd maybe qualify for Carers Allowance if he's on PIP.
Our local council has a welfare rights, income maximization team to help with this sort of guidance - yours may hsve similar. Your local Carers Centre may also provide guidance.
I've had to resign from my voluntary post with the police plus put my self-employment on the back burner at the moment as I am now caring for hubby 24/7 as he needs round the clock care. It's not easy.
Thank you.....i guess ill have to start digging around. We've not claimed anything yet, so its a new thing to understand.
I will ask the transplant team too.
Its difficult because he still has the odd good day where he manages to go to work for a few hours but its more because hes so worried about it and it takes all his strength. He lies in bed trying to run his staff from his phone😏
we applied for and obtained full PIP (which is not means tested). I strongly urge you to get some support filling out the paperwork. We found a local charity who walked us through it and helped us word things truthfully but in such a way that really captured what we were going through. My partners PIP was awarded without need for medical or interview based on the detailed paperwork . Also once you have PIP you can apply for a blue badge which has been so helpful
The thing to remember is that when applying for PIP it’s the worst day you are claiming for, those days when he can’t get out of bed or to the bathroom without help.
If he is listed for transplant you could possibly apply for PIP under the special rules (terminal illness) You could also possibly apply for carers allowance.
Ok. I wondered about this, because he was given a statistic last week which was putting him in the terminal bracket. I know they dont normally do this, so i know he must be pretty bad now based on this. Its based on risk though, rather than slow decline, so the time left isnt categorically so many months, its more " the risk of dying in the next so many months is this %" (far, far too high btw)
I wonder how many transplantees get into gambling or extreme sports once the risks in life get smoothed out? I bet life suddenly seems terribly predictable after recovery....💁♀️
I shouldnt joke or make light of it, but last week was a rough one - and i sometimes feel dulled to all these difficult conversations. I think im a bit in denial, its not an option that he doesnt make it, as far as im concerned. Im going to fight tooth and nail for him until its completely out of my control.
Sometimes you have to go to dark humour to get you through. Don’t beat yourself up about the odd joke, especially not on here. Lots of good advice on here. PIP applications are fast streamed for terminal patients so do apply. Citizens Advice can help once you’ve got the form and there is lots of advice on their website. Don’t let the odd good day put you off, they look at whether he needs help more than 50% of the time. CA will als know about local welfare assistance schemes you might be eligible for and other benefits.
I’d also suggest contacting you local hospice. They can advise on all sorts of support available. DO NOT think of this as giving up on him, hospices are amazing places which focus on getting the best out of life
More tricky because your husband runs his own business rather than being an employee (I presume not an employee)?
Check your mortgage to see if you have critical illness or income protection.
As others have said, PIP application, which will allow you to potentially get carers allowance. The PIP form is hard but as others have said you have to approach it as what he can't do rather than what he can do. So instead of "on a good day he can do a few hours work" it's "he cannot fulfil his normal days or hours of work". Consider the amount of care you need to provide to him, especially if the care needed falls overnight or means that your husband cannot do basic things for himself e.g. make a meal, take medication, go to an appointment; stuff we would take for granted.
I take that as a real compliment - thank you! Unfortunately, between a full time job, 2 teenagers, husband with health issues and preparing to start my masters later this year, there is little time for anything else but it's definitely something I'll look into in future!
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