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.

The only way to ‘win’ in this situation and to get the care your DH needs is to go the legal route.

Not necessarily. With the amount they having savings OP could organise a private package of care at any level they want or feel is necessary, without the in put of anyone. I know it isn't what anyone really wants to use savings for but they do have them, giving them lots more choice than others.

He may well be entitled to CHC funding but the only way to know that is go through the process. A solicitor won't make that happen any faster and will just cost more. Also, if they're (CHC funded team) very clear about the reasons why he isn't eligible then a solicitors appeal may well be a waste of money.

If an appeal is unsuccessful then he'll fall back to social care provided support (or private) which will be means tested. The means testing is very clear and straightforward, with no room for appeal really.

I'm not saying it's right, just how it is.

Based on the info OP has provided:

• DH may be entitled to CHC funfing but this needs assessing and will not prevent discharge
• DH has care needs and needs a care package prior to discharge. OP could choose to do this privately or to have the discharge team organise it. This choice is ever present and can be changed at any point.
• A solicitor is not needed.

Thank you everyone for all your help.

He has secondary kidney cancer, which has gone to his bones. He's been in hospital for almost 4 weeks while they try and get his pain managed and whilst he is more comfortable, while still and flat he still can't stand, or even sit without excruciating pain. He's ex army, very much a take an asprin and get on with it type, it's awful to see (hear) him in so much pain and he's on so much morphine it's really hard to have a conversation with him about what he thinks.

To clarify, he can't stand at all, he can sit, with aid of the hospital bed, but is in a lot of pain to do so. He can't transfer bed to chair.

@WinstonmissesXmas

I agree entirely with *@C8H10N4O2* This has been my family’s exact experience with a grandparent, so much so that I have made an official complaint about the handling of their care. Social workers have lied, been negligent and no one appears to take responsibility for anything. The 6 week transitional bed funding has been extended for DGP this week as all parties involved failed to complete the necessary assessments. One social worker claimed to have completed a full financial assessment over the phone when DGP is profoundly deaf. A) that’s not her job, it’s the LA finance team’s B) if DGP doesn’t have capacity (decided on the strength of this one call), how can he possibly be aware of his finances?

The whole system needs an overhaul. I’m pushing for continuing healthcare funding and now have a solicitor involved.

To the OP, I really feel for you. The only way to ‘win’ in this situation and to get the care your DH needs is to go the legal route.

I really wish people people would stop trying to push the OP towards solicitors, private CHC assessments etc. I know that some people have bad experiences, but that is not the overall experience of people discharged from hospital requiring care. We have no information at all about what the OP and her DH have been offered. We have no information at all about whether he may be eligible for CHC funding. The OP and her DH are in a very sad and difficult situation, but there is nothing at all to suggest that the medical team caring for him, nor the discharge team or social services, are failing in their duties to them.

My late FiL had fully funded continuing healthcare, prostate cancer had spread to his bones, the local Douglas Macmillan hospice sorted everything out, he had carers going in 3x daily plus District nursers and overnight care from various charities and had an amazing
hospital bed put in the living room.
You can also get help from SSAFA /Royal British legion or see if there is a local Tri-services centre you can contact.
Ex military can usually tap into fantastic levels of help but they do have to ask for it.

Hi OP given your update please check if he has a CNS (clinical nurse specialist) in the hospital and a palliative care nurse/team referral. I am a CNS for another tumour site and they should be able to help not just him but you-we are there to support families as much as patients! He could be entitled to a DS1500 which would exempt from things like having to do PIP assessments. Dependant on the hospital there may also be on site macmillan/Maggie advisors who are trained for this sort of thing. The 24 hour macmillan line is also helpful and they have an online chat forum which is a good place to find support.

It sounds like your first port of call is to ask someone to complete a DST (decision support tool) checklist to see if your husband qualifies for a full CHC assessment. You can find a copy online if you want to see the kind of things that are considered. It should be multi-disciplinary so more than one person contributes to it and DH should also be involved in the process. So sorry OP, I hope they can find a way to manage his pain.

Also the forces have some fantastic resources definitely worth checking down that route

TBH I'm struggling to get any information from anyone and DH is very vague.

He's in our local hospital, having been admitted via A&E in a lot of pain. His oncology team are at another hospital and have never met him (the original tumour was removed surgically without oncology).

He sees a McMillian nurse almost daily and she is the only person who's talking to me. She clearly understands the pain management and is leading on that, but not so much his condition and I had a call from the occupational therapist yesterday asking about the possibility of fitting in a bed downstairs.

That's it. I haven't heard from/of a social worker .

It's also not entirely clear whether his worst pain is caused by the cancer or by a separate back issue.

Oh, I hadn't thought of the Army, he only did 6 years, a long time ago.

I rang DWP re PIP yesterday. As he hopefully has more than 6 months, it's the quick application. They said they'd send a form....which I should have in 3 weeks! Three weeks, just to get the form to start an application. It doesn't matter for us, we can wait, but some people will be in need of that support, that's kind of the point.

Sigh, it's not the quick application

Take the application page by page and do not underplay anything, think about the worst day. They are very good at trying to get out of paying. Get copies of consultants letter, pt/ot, hospital discharge team etc to support the claim

Ignore everything C8H10N4O2 states, its very combatative and suggests everyone in the nhs doesnt want to do their job with any compassion or proffessionalism

Congratulations on misrepresenting what I said to try and attack me rather than my points.

This is absolutely typical of the response given by the more senior, suposedly responsible people involved in more than one fiasco we have been through. I honestly thought we were just unlucky the first time but it was a recurring story amongst other families. "Not my problem" or "Computer sez no" was par for the course.

In the case of the poor record keeping which nearly resulted in a very vulnerable, elderly person being discharged alone with no care I discovered subsequently that the CQC had repeatedly raised poor record keeping and no progress had been made. And assessment of needing nursing care (not social care) was made and rapidly reversed when they realise they had fucked up on address again and it was a different party paying the bills.

Every carer I spoke to during that time reported the same issues with every client they had. People kicked out with minimal support because assessments of needs are based on the funders finances and not the patients' needs.

In fact pretty much all of the day to day staff we met expressed the same frustrations - and its not all down to money. A couple of levels up - simply didn't care or were only interested if you were going to sue (I was literally asked that question on a call).

I'm so sorry @Toorapid, it sounds so difficult. Its excellent that the Macmillan nurse is seeing him daily. Is she part of the palliative care team?
She and the OT will be liaising with the social work team about what your DH is likely to need for discharge, then they'll liaise with you.

OP, I’m so sorry. What a situation to be in. Obviously do what you need to given the specifics of your situation. As others upthread have said, it isn’t necessarily nice to feel the only route is a legal one. However, IME, the three family members I have assisted in similar circumstances have all required this as, as @C8H10N4O2 says, I have never found anyone who genuinely cares. Family member one - we did our best within the system and eventually threatened to sue. Member two, similar. Current situation - everyone is aware this is not my first rodeo and I am documenting absolutely everything. Solicitor already involved. It’s a sorry state of affairs but when you have people in their 80s and 90s who have paid their dues, taxes, lived good lives, in one case always using private medical care, and then the one time they need help they are vilified and ignored, a stand needs to be taken.

So, atm, I can't really "do" anything, until we find out what "they" are proposing? I did make it clear to OT (thank you) that whilst we can find space for a bed, I will be going to work.

Just one little thought. Our family car, registered in DH's name, is long over due for replacement. We'd just started looking when Covid and then his illness took over. Presumably, that would be a valid use for some of the cash in his name, even though he is unlikely to use it?

Just one little

The Carers act says you don't need to give up your job. There are important issues you need to be across in terms of who picks up the tab for his care. You absolutely need to see a specialist advisor about this.

@Toorapid the best advice I can give you regarding CHC funding is to ask the MacMillan nurse's advice and opinion. If she's supporting him with pain management then she will have a really good idea of what his needs are so she should be in a position to explain to you about CHC, what it is, and if there is a chance he may be entitled to it.

Please don't start trying to shift/spend funds. The council will have to look at the bank statements and if you've done this it will be picked up right away and it will treat it as a deprivation of assets and you'll have to pay anyway.

How to pay for end of life care - Which website has a good clear guide.

The discharge social worker can be contacted via his Macmillan nurse.

Sorry you're going through this. Having savings and having to fund care will mean you are in a position to buy in exactly what and who you want in terms of care, at times to suit you both.

@AnnaSW1

Please don't start trying to shift/spend funds. The council will have to look at the bank statements and if you've done this it will be picked up right away and it will treat it as a deprivation of assets and you'll have to pay anyway.

Yes, but buying a car must be legitimate use?. We do need a car. Even if we do end up having to pay anyway, we still need a car.

@Toorapid, I have the utmost sympathy with your situation and feel desperately sorry for your husband. I’ve been there with elderly relatives and it’s bloody hard. I do find your appetite for diverting money quite distasteful though. We save for a rainy day, it’s pissing down in your life - put your umbrella up, that’s what it’s for.

Yes, but buying a car must be legitimate use?. We do need a car. Even if we do end up having to pay anyway, we still need a car

I agree. You’re going to need a reliable car for emergency pharmacy or hospital runs. I can’t see how buying things you need would be deprivation of assets.