Leaving work to care for disabled husband

[Confusedmum34]

Hi everyone
I dont know if I'm posting in the right place but I need some advise.

My husband is disabled so is unable to work. I'm the full time worker always have been. We have a 6 year old daughter.

Now my job isn't the best pay is ok 25k a year for a really stressful job. I work in housing so it's bad at the minute.
My husband has degenerative spinal disease so it's quiet bad at the minute. He cant walk properly (has a motability scooter) he has lost all muscle in his legs and has gained so much weight because of his crumbling spine.

In 2012 this happened he had a mri and we knew it was bad. Fast forward to Now he had another mri done about a month go and now from tbr middle of his back down the discs are bulging and degrading rapidly. (First mri since 2012)
He can't do much on his own anymore I have to help him shop wash granted he can still cook with a perching stool for the kitchen.
We were talking about me maybe becoming his career full time. That would mean if have to leave work
I'm just worried about it all. My husbands health is priory he's fallen down the stairs a few times and it's taken weeks for him to even be able to move properly afterwards.

Has anyone done it and been ok? I know i can do these calculators for help we could get but I'm worried we wouldn't get the help.

I'm not looking to go on benefits to have a better life and not work far from. I just want my husband to be ok and for our family to be ok.

Thanks for listening if you got this far
X

Sorry to hear about your dh. Are you claiming benefits like attendance and carers allowance. Has your dh had a care needs assessment to see what help he can get and what adaptations could be made and what equipment could be made around the house to make like simpler for you both, he may be eligible for improvement Grant's like a shower. If he is losing mobility then you may need to have the help of carers, it can be difficult mentally and physically to be a full time carer especially as you also have a child. You would not be expected to offer 24/7 care 24hrs a day, you need to look after your own health too, is there a support organisation specialising in your dh condition.

Well personally I would try to access as much outside care as possible, as Fleas has suggested.

You going out to work probably helps to keep your head above water, even if it is a stressful job. If it is just two of you 24/7 then you may not only drive each other mad but you may become depressed and isolated.

I hope you get people in the same situation who can give you more advice.

Do not give up your job.
You may need to consider moving to a bungalow or having the house adapted. Is he getting PIP?

I agree with other PPs

This isn't all on you alone.

Get as much help from outside as you can - ask for home assessment from Social Services. Make contact with the hospital team to ask what support they can direct you too. Ask if there is a local support group - they'll help with directing you to practical support and offer social network support too.

If stairs are a problem - think about a stair lift. Think grants are available but you'll need that SS home assessment.

Hi all
Dh gets pip high motabity normal care. No careers allowance.
I get work pay and a little child tax credit. We get some housing benefit to help towards that. We live in a HA owned house so rent is slightly less.

We have asked our local council for help with assessments etc and as they have gone bust no grants are in place or any kind of help so we are on our own.
I'm currently working from home have been since Jan with no indication of when we will be going back if ever. I'm glued to my laptop 8 hours a day as I'm taking calls all the time.

Its a tough one to think about I mean I have anexity myself and depression so it's making me panic. It is something that we do need to think about.

I just hope there are people out there who can give some advise or are in the same boat x

Is your DH claiming PIP? If not do so - doesn’t matter if you’re working or not. Sorry me excellent guides on www.benefitsandwork.co.uk for that and for ESA etc etc. Only £20 subscription to access members guides. They really are invaluable in guiding you on the absolute best way to fill them in.

Some! Not sorry me

Sorry, cross posted with you! I see you’re already claiming PIP. But there are other essential guides on benefits on that website too

Is there a CAB near you?

PIP

Go part time & apply for carers allowance

Do a UC calculation---you may be better off on it.

Be cautious. If you ever no longer need to be his carer you will need to get back into work, plus you will lose out on private pension payments while being a carer.

@DamnUserName21

Is there a CAB near you?

PIP

Go part time & apply for carers allowance

Do a UC calculation---you may be better off on it.

Yes we have done the calculation. Comes out different everytime and that's never a sure thing either.

We have lost all our CAB around us. The closest one is about about hour away and is open for 2 hours a week.

Check out this website. It's useful.

www.uceplus.co.uk/

www.scope.org.uk/advice-and-support/home-adaptations/#Adaptations-from-your-housing-association-click

he is entitled to a free care needs assessment
have you been able to contact the HA to ask for their help in either adapting the house or finding you more suitable accommodation, him falling down the stairs is a risk to both you and him

Leave the job but for a lower stress one.
Get outside help in now for an assessment. Don't feel guilty about being on benefits.
Work out the best combo of him/you claiming and carers allowance

I am sorry OP, but it doesn't matter what your local authority's financial problems are, they are not your problem. Your DH is entitled to an assessment of his needs for care and support; and assuming the two of you have less than £23,250 in savings, etc, then his needs have to be met by Social Services. You need to decide what care realistically you are willing to provide, and keep bleating that to Social Services. By law, you are under no obligation to provide any care to another adult; and you can just say:

"I am not willing to provide any care."

You don't have to explain why. Then the council has to meet all his needs, subject as above to the financial assessment.

Whatever you are prepared to do, you should ask for a carer's assessment, because you are entitled to respite (although its assessed on him), and time to yourself for work, education, other family relationships and medical appointments.

As his problems sound like they are due to a medical problem, then he should be assessed for continuing health care funding (CHC). This is for people, whose care needs arise from a primary health problem. Lots of people will come on here and tell you, CHC is only for health needs, not social care needs - this is not true! If he is unable to dress himself, because of his back, then that need arises from the primary health problem. (I have a DD in her 20s with CHC, and the CCG funds all her care such as getting dressed, washed, personal hygiene, going to the toilet, you name it. We got 56 hours of care for her in our house, which is what we wanted; and when we couldn't cope anymore; she gets 1:1 care all her waking hours, and 1:4 at night, in a care home.)

As the NHS is free at the point of use, unlike social care, there is no financial assessment; and DH won't have to pay any of his benefits over to SS towards his social care. He will get to keep all his benefits.

Look up the Assessment Framework for CHC funding on Google, and put a request in to your local CCG. They have to do a checklist to assess his needs.

If they say, while he has medical problems x,y,z; but he does not meet the threshold for CHC, point to the Pam Coughlan case - a woman, who was in a wheelchair, after an accident iirc, who did not meet the thresholds individually; but the judge said her needs had to be looked at in their entirety, and awarded her CHC.

See:

https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachmentdata/file/746063/201810011NationalFrameworkkforCHCCandFNCC-Octoberr2018Revised.pdf

See:

caretobedifferent.co.uk/the-coughlan-case/

Can you take a career break? So leave for say a year and then see how you cope. You will be on universal credit

And there is a legal obligation to provide an assessment

Look at how much care he needs during the day. I’m disabled myself and manage with paid carers. Once he’s up washed and dressed with some help what else needs doing in day? Where is bathroom? He shouldn’t be going upstairs in day if he’s at risk of falling. A wheelchair is much more stable way of getting around rather than struggling around house, risk taking and using stools.

Being paid carer 24/7 is needed in some cases but lots of changes can be made to homes to make that less likely. It’s huge and poverty step to give up working not to mention knock on effects on pension. As well as strain on relationship.

You need show caring needs for 35h a week so 5h a day. If he’s only on standard care you may struggle get it right now. I’m full time wheelchair user I’m expected to get up showered dressed in 30min care visit of a morning. How much care ideally does he need support for right now?

I did it. We also sold our house. He had been wrongly diagnosed and he died much sooner than expected. I was left on benefits, in a rented house. Other than that it was a relief to leave work. I've known people to break down who are still trying to work. If you aren't losing a lot, I'd become a full time carer. The care package won't be enough if you do get one and he will only have increasing needs as he ages.
That depends on if you aren't the type of person who needs to be in paid employment.
I also knew someone who decided to end their marriage on paper so his spouse got a bungalow and care package. It was their only option.

Just note though each council funds care on own rules. I live on ESA and PIP as my only income I have pay £550 month for my 10h or care a week. It’s certainly not free. Some councils have much lower cap for one London Counil it’s free!

"You need show caring needs for 35h a week so 5h a day."
It's 5 hours in a 24 hour period. So if someone needs supervision etc during the night, that counts. The majority of people who live with someone disabled do, in effect carry out 35 hours. Even if that stops the disabled person from eating badly or being exploited etc.

Not quite the same situation here...

I am the one needing care, but also the one earning the income. It made sense for my OH to give up work as he wasn't earning much and struggled to find jobs/stay in work.

In your situation I would fight tooth and nail to keep your status as employed, whether you find a new job that is less demanding or not, that's up to you.

The government want you to be your husbands carer, it is FAR cheaper for them if that happens, than if they have to provide care via your local authority.

It will be a MASSIVE strain on your relationship, and on your finances - you'll get carers allowance, thats around £66 a week, and you may find that you both then get some sort of Universal Credit because he is unable to work due to disability, and you are unable to work due to caring for him.... but it will not be nearly enough!

To get care for him, you WILL have to fight for it, there are charities other than CAB that can help with that, but I'd recommend doing some serious research before making any decisions here.

@Ponoka7

"You need show caring needs for 35h a week so 5h a day." It's 5 hours in a 24 hour period. So if someone needs supervision etc during the night, that counts. The majority of people who live with someone disabled do, in effect carry out 35 hours. Even if that stops the disabled person from eating badly or being exploited etc.

I just wasn’t sure how much you need prove. As a Disabled person my care assessments are done to the minute. 30min morning 15min bed. 30min cleaning once a week etc but maybe Carers allowance just have to say May fall over at anytime so that’s 168h a week on on duty and it’s no stress and nothing more to prove.