lf DH is discharged from hospital needing significant care will I be expected to leave work?

[Toorapid]

This whole situation is so hard. At Christmas DH was recovering from a significant illness, getting his strength back and starting to make plans for the future.

We're early-mid 50s and were looking at 5-7 years until a comfortable retirement.

Now, he's completely bed bound in hospital and has 18-24 months to live. He's been there for 3 weeks, while they try to get him mobile enough to come home. Now they're talking about sending him home as he is, as he's not making the progress they hoped. He literally can't do anything for himself. He's really upset at the prospect of me wiping his bum and I can't say I'm thrilled by the idea (although am hiding it well).

When he was working we had a joint income of £100k, so we're very fortunate and have been able to significantly increase retirement savings since DC left school, hence the plan towards a comfortable retirement.

My salary is slightly less than half. We can manage on it, but not in the way we're used to and not increasing the pension pot. Some of his occupational pensions will be gone or significantly reduced by his death.

So, I need to keep working to cover our living costs and fund my retirement, which is now not likely to be until official retirement age.

Lots of bombshells in the last few weeks, losing my husband, the prospect of caring for him, never doing all the things planned for last year and cancelled due to Covid, the impact on our DC (left school but still only teens), but the one that's pushed me over the edge is that "they" seem to be assuming I'll be at home for him.

I desperately want him home, but I love my job, I need my job both financially and emotionally. They'd give me some time off, but we have no idea how long we'll need and they're not going to give me 2 years +. He'd be entitled to PIP, but we have savings so no means tested benefits and once he dies, I'll be entitled to noting and a 55 to (ish) job seeker.

I always thought we'd done everything right. I can cope (financially) with his death, but not this long period of limbo.

Who do I need to talk to about getting support, if it exists? It's hard because I'm not able to visit so aren't seeing any of the people caring for him and because he's with it, they're taking to him not me.

I'm sorry if this seems awful to be thinking of myself and money, believe me I've thought of lots of other things too, but this is the one that kept me awake all night this time.

Op, I have no words I am so sorry.

Unfortunately all assets in joint name will now be considered as available for care. We’ve recently gone with it for my grandparents and it’s utterly sickening having to give away all they worked for when many receive it for free.

I cannot imagine the injustice you must feel at both his diagnosis and having to surrender your savings when your future looks so uncertain.

If he has life insurance they will pay out at diagnosis of a terminal illness and his pension may have similar terms. Spend the morning ringing around to see what everyone says.

Additionally under no circumstances are you to give up your job. You cannot and must not. Social care will cut any corner they can and you must refuse to let him return home until they have a cohesive care plan in place.

Your husband does not want you caring for him and you have a responsibility to your children to continue to provide support and care. More importantly you have a duty to yourself to maintain as much normality as you can.

I have no words or advice, just nothing but love to you, DH and your children. Be kind to yourself x

@Toorapid I agree, it's a very difficult decision, could he not go somewhere with you as his one visitor? I don't know if that's going to be an option for nursing home residents- also if he has vaccine. You need a social worker to do the assessment and run through some of the options with you, they will know more about visiting etc.

The pandemic makes everything harder, I agree with that, and perhaps you are right, a spell at home for a while may be an option. I think the problem will be that social services/council funders will be delighted if you take him home and will assume you will do all the caring, with a small amount of their additional care (paid for or not by you).

You definitely need to see an IFA regarding the pensions, and make sure they are qualified in dealing with Defined Benefits (DB) as these are much more complex than the standard defined contributions (DC).

I worked in this field for a while and it can be very complex, however there are plenty of possible options including transferring the DB pension into a DC so any assets remaining on death can be paid to the heirs rather than vanishing (not all DBs allow for this e.g. civil service pensions don't). But you DO need someone qualified and well versed in this field to work out which would be the best option for you.

@Rightleftupdown

No. Stand your ground. Social care have an obligation - don't give them an inch.if you can, get in touch with CAB who will be able to advise you further. SC my pull all sorts of stunts and emotional blackmail but they absolutely can't force you to give up work. You should insist on seeing the care plan before you agree to DH bei g discharged into your care and you may even have to suggest that they look at alternative solutions rather than DH coming home - they will want to avoid this at all costs because of the cost and time implications. Please take advice on whatever you are told by them because although there are some excellent SC professionals, there are some who do not tell the whole truth and some who have the system rather than the patients best interests at heart.

Agree with this, though I understand the pressures on SC to behave as they do. HCPs may also put pressure on you because it's the easy option for them. Stand firm. I say this as a GP myself, but a someone who has also been a carer in a similar situation to yours, (though with a parent rather than a spouse).

I am so sorry about your sad news, OP. I know this sounds brutal, but you must think of yourself and your future: short and long-term. Do not give up your job. There are 168 hours in the week and you probably work for around 40 of them, at most. You will still be his carer, but that doesn't mean you have to be around 24/7. It's not good for either of you to try to be on duty continuously for 2 years.

You need to go hardline now.

You will be expected to give up work. You will be expected to give up your life. You will be expected to die, frankly, to provide free care. And the only time it will stop is when you stop. So don't start.

Everyone and everything will pressure you to take this on and it's the worst thing for both of you. You will end up impoverished and powerless and eventually disabled yourself. You need to get care in place now, while you still have energy and resources. Do not give up your job. Do not claim any "benefits" for carers. They are all traps. There is a care system. It does exist and even full time home care is possible. Get a lawyer, Get CHC if you can. Do it all like this from the start -- don't wait.

Don't do what I did.

www.nhs.uk/conditions/social-care-and-support-guide/money-work-and-benefits/nhs-continuing-healthcare/

This is CHC. If he has a primary health need the NHS must provide his care for free. You might need legal advice.

There is a care system. It does exist and even full time home care is possible this is not true in my area, you cannot have full time home care for two years, I had it briefly and was pressured daily to put my husband into a nursing home, it was only the lack of available places that stopped this happening immediately. Same with CHC, applied with health care professionals 100% behind us, refused many times. What is on offer in our area is visits, so a package of three times a day, and possibly one night if you are lucky. Once people need more care than that and they are stable, they go into a nursing home.

You can of course pay for full time home care but it's very expensive.

Thank you.

If nothing else, I've become clear in my mind that I must keep working and I will be stroppy if need be to make that happen. I'll be horrible if I feel I've been forced to give up everything to care for him and that won't do him (or DC) any good .

The good advice though is to get a lawyer who specialises in achieving CHC, I started down the legal route due to the above problems, lucky for them my husband died before we got this resolved.

From a family member who works in a hospice: I would definitely recommend contacting your local hospice (you can find it on the Hospice UK website), most will accept self-referrals so you don’t generally need a hospital referral. They’ll be able to work with you to arrange a package of care, which can include both at-home services and Inpatient/day services even during current times. The hospice where I work have a social worker team to help advise you with financial matters and lots of other services including counselling for your family and your husband, if you want it of course.

Worth noting there is an appeal route for CHC, so if refused on first attempt you can have a second go

Local authorities will do almost ANYTHING to wriggle out of their responsibilities, OP employing tactics that would make Donald Trumo look like a saint, I’m afraid.

Stand your ground - do not be bullied, manipulated, guilted. Try to find an advocacy service to help you.

Be prepared for a fight to get anything that actually meets yours and DHs needs.

I’m sorry to hear your DH has a terminal illness

@SignsofSpring I'm sorry about your husband.

I second going to the local hospice. Many people don't know they support people way before the end, have day centres, advice services and of course are wonderful when things get more difficult. Also good for giving advice to/working with GPs about palliative care. Our local hospice is fantastic.

I’m so sorry to hear this OP 💐

It makes me so sad to hear of peoples experiences with social care. I’m a social worker and can assure you that we do not all act in the way some posters have suggested.

All care is assessment based and different from individual to individual. 24 hour care at home is a possibility if that is what is needed. You need to request that the ward send an assessment notification to the hospitals social work team for them to assess and ensure that a CHC checklist is completed as a part of this process.

Wishing you all the best.

@lojojomo thanks, I think the OP is doing amazingly well posting for advice and there's some advice on here which I wish I'd had or thought about.

I am so sorry for you and your DH.

I think your DH will be able to take his pension and life cover if it falls under serious ill health.

I wish you well

If you are going to be your husband’s carer let your GP know.
You will be entitled to the Covid vaccines, annual flu jab, and I believe an annual health assessment.

Just to say with moving savings around, it was made very clear to me when my mum required a home that they have the right to look carefully at finances so if you move money now, they'll find it. I have heard of cases where they literally go back years, looking for anything that might suggest money has been moved about to avoid having to pay for care. Anything in a joint account will be yours, however, as will a jointly owned home.

I am sorry to hear of your difficulties and hope things go as well as they can over the next couple of years.

@Toorapid

Thank you.

If nothing else, I've become clear in my mind that I must keep working and I will be stroppy if need be to make that happen. I'll be horrible if I feel I've been forced to give up everything to care for him and that won't do him (or DC) any good .

Remember that most people trying to guilt you into giving up work have never been in your situation and have no clue what they are asking. Most hospital doctors and nurses have never even visited a patient at home, let alone tried to care for somebody themselves 24/7. I once resorted to asking a hospital physician if he had ever wiped another adult's bum. Shut him up fairly fast.

So sorry you are going through this. I am not sure but your husband might be able to get attendance allowance which is not means tested to help with paid for care.

Sorry to hear this. It must be so difficult.

Have you checked insurances to see if you have any Critical Illness/Income Protection, or if any Life policy will pay out early on a terminal diagnosis?

When dealing with the system remember that you are two individuals with your own entitlements. You need to make sure you get an assessment as a carer as well as your husband's assessment for his needs. These are two separate assessments.

A lot of people are very deluded about the levels of 'help' and especially benefits, Haahaahaa!, out there for people who need care. And CAB being some sort of magical place or that there are all sorts of hidden benefits out there. Or magnanimous employers who allow all kinds of long term leave of absence during a pandemic with rising unemployment.

You're being sensible. Do NOT leave work to become a carer. Whatever you do.

My advice
Start as you mean to go on
Channel your inner mumsnet viper bitch and keep repeating
that’s not an option
that’s not possible
No I’m not doing that
No Fuck off
No will be a word you use a lot
Your house will be fine
Your half of any savings will be fine as well
But for your own sanity & health please keep saying No and if your not sure about what they are asking still say NO

If your husband is terminal then you want to enjoy the time with him as much as possible
Not spending precious time wiping his bum and becoming a burnt out wreck .Some people could easily do this but I know I couldn’t

You saying NO is absolutely the best way to get the best help for your husband and yourself

@Allergictoironing

You definitely need to see an IFA regarding the pensions, and make sure they are qualified in dealing with Defined Benefits (DB) as these are much more complex than the standard defined contributions (DC).

I worked in this field for a while and it can be very complex, however there are plenty of possible options including transferring the DB pension into a DC so any assets remaining on death can be paid to the heirs rather than vanishing (not all DBs allow for this e.g. civil service pensions don't). But you DO need someone qualified and well versed in this field to work out which would be the best option for you.

I think Allergictoironing knows her stuff. Please do this.

OP.