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.

No, not awful at all - I think you are being sensible, in that one of you needs to earn to kee a roof over your head and food on the table, plus keep a job for the long term.

Insist on knowing what plans are being put in place for a care package before allowing him home.

I think you need to speak to the doctors to discuss if care is available, carers who could come in when you are at work. Explain to them you will be unable to provide care during the day and cannot afford to stop work

I’m sorry this is happening 💐

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.

You can request a social services referral whilst he is still in hospital so they can assess what care package he needs. It sounds like his savings are over £23,250 though so he will be paying the full cost of his care.

Yes you need to speak to the hospital to make clear that you cannot provide full time care. He may then get a care package offered, although you may wish to have a think about what would be required - someone there all the time, or two visits a day, or something in between?

Also, you're not awful. It's perfectly natural but just think for a minute - would they be expecting DH to be giving g up work if the roles were reversed?

When my MIL was discharged from hospital but unable to manage independently she was given six weeks in a care home for assessment. This should be free (either SS or NHS funded). Then can you arrange for carers rather than give up your job. Again if his savings (not yours) are under a certain amount this will be funded.

I think the key thing is to make sure he is not discharged home without a care package being set up. And make sure everyone knows you work and therefore cannot look after him - as soon as someone thinks you're willing to be a full time carer for free they'll wash their hands of him.

Health and social care should be very integrated. The hospital should be able to point you in the direction of the right people to speak to. Otherwise speak to your local social work team and ask for a care assessment. Be really brutal and insistent and make it absolutely clear you cannot and will not be able to care for him.

Is there a charity for your DH's condition? They may be able to offer advice. It would be an unsafe discharge if the hospital sent you DH home when there would be no-one there to care for him (because you are at work). I think you need to try to speak to medical staff at the hospital and explain that. Your DH has capacity, but he doesn't know (right now, while he's ill in bed) what the situation is at home, so they'll have to speak to you.

I am so sorry to hear this and you've had some great advice here.

I'm going to ask about life insurance. Is that something you have?

You may need to fund carers to come in to support with some of these tasks. Is he on hospital or a rehab bed, if he was walking before, even if he has a prognosis, there should be some rehab available unless its MND ? I would be pushing for more rehab as at least this would give you more time to plan . If your savings are over a certain amount you/husband will need to pay for carers if they are below its then means tested. Is he not likely to stand, take any steps again? Feed / drink himself?

If there's a carers centre near you, speak to them for advice. Agree with previous posters, stand your ground about what care you can/can't provide. Are you in Scotland? There are different rules about funding care there.

So sorry to hear this, what a huge shock to have to take in all of this.

Also, if you have critical illness cover for DH claim ASAP, that may mean you can afford additional support.

You need to ask for a Social Worker assessment and that a CHNC (continuing health needs care checklist) Is completed - depending on the CHNC result you may get a care package funded or part funded (otherwise will be means tested ).

Most care packages are for up to four calls a day and although your DH will be alone between care calls it does mean that careers will address his care needs whilst you are at work...

You may have to 'refuse to have him home until the above is completed !

My neighbour is in this position and goes to work. She does 25 hours a week. She’s had to put a lot of effort in to get proper funding and organise adequate care but apparently it can be done. Sympathies.

I suppose it's too late to start moving savings into my name? Something I would frown upon really, but desperate times...

Of course they can't make you give up work.

This may sound harsh but it sounds like you are over the threshold for funded care thus it will be expected that you financially contribute. I understand this isn't what the savings are for, but depending on the level of savings depends on your contribution amount

Social services will assess care package need and it sounds like your husband will be eligible for this. If you are over the contribution amount then it will be about them suggesting a level of care rather than an agreement to fund it. They will assess him for the minimum amount of hours they need to provide someone, so you may also feel that you would rather top this up individually.

The other thing to check is wether he would meet the continuing healthcare criteria which would make him entitled to a different kind of care package

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

If it’s a progress issue, you could ask about a rehab bed. That should be funded for up to 6 weeks. It would also allow time for a social care assessment and possibly an occupational therapy assessment to consider what adaptations might be needed for him to retain some independence. A closomat toilet for example would allow him to clean and dry himself.

The post above about savings is the one you really need to consider. As you likely have savings above the threshold you might want to weigh up the cost (short term in actual costs and long term in loss of earnings for you) of buying the care in, versus you taking on the care.

It sounds impossibly tough OP and nobody would blame you for focusing on the practicalities while dealing with the situation.

I'm sorry this is happening to you both.

He should not be discharged until a proper care assessment has been made. That said, hospitals will try it on - you have to be tough and REFUSE point blank to have him back home until it has been. And that means being clear - if they put him in a taxi or an ambulance and he turns up at the door, you must refuse to let them in!

Most care packages now come at a cost - and not a cheap one I am afraid. You have to have little or no money to get one that doesn't cost you anything, and packages are often very little as well - not a lot more than the basics. That is why so many people end up as carers. I'm afraid it simply isn't as easy as saying that you need to work so they will have to provide care. It should be, and I wish it was, but you need to be prepared for the fact that it won't be AND that you will probably have to fight hard for everything you get.

You don't say what the diagnosis is. If cancer, then MacMillan are the people to speak to who will guide you through everything - but if not there are other charities who will be able to provide advice about entitlements and finances..

In the longer term, check occupational pensions schemes - if part of the employment package there are usually death in service benefits / widows pensions etc. They don't generally just "stop". Whatever his job is, DO NOT resign. He should stay on the books until the employer dismisses - this is very important for occupational pension reasons. If he's in a union, then talk to them now - they will have all sorts of resources to advise on many aspects of this, and will also be able to support you to get the best deal work wise. And the same for you - if in a union, talk to them as they will have all sorts of advise and help available.

@Toorapid

Yes they do financial checks and it will see that you've moved assets around. Its incredibly common for families to do this around care fees so moving them at a late stage is unlikely to hide the savings

@Toorapid

I suppose it's too late to start moving savings into my name? Something I would frown upon really, but desperate times...

Yes, would be deprivation of assets and as you’d be doing it after you became aware he needed care, the council would continue to treat it as a joint asset.

You need to talk to the discharge team at the hospital in the first instance. They should have involved social services and community services in a full assessment of his needs prior to discharge. Ask to also speak to the hospital social work team.

If his needs are complex, he may be entitled to continuing care funding. He may be entitled to part funding for healthcare, at least. The OTs should do a visit and assess any equipment or adaptation to the house he needs.

How much, if any contribution you make towards care depends on many things. It’s not as simple as him having assets, unless they are entirely separate.

Would he consider residential care if his needs are very complex? There are some good places for younger adults with physical conditions that can take the pressure off you both, promote hi independence and allow you to remain husband and wife, not patient and carer.

Look into his pensions as different rules apply with terminal diagnosis and you maybe can take it all in a lump tax free sum, when I took my pension they mentioned this to me as part of the pensions process. This could help towards any costs

Sorry about your situation.

If his condition is terminal, could you ask for discharge to a hospice and for the hospice to work with you on a care package before returning home as well as ongoing support.

If you have savings you will have to fund his care.
Life insurance / critical illness cover or early draw down if his pension maybe possible ( and there maybe enhancement for terminal illness )

Talk to work - it may be possible to change / decrease hours etc or even take a period of unpaid leave. Remember he’s life limited and you may actually want to spend some time with him too