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.

Surely his life insurance will help with your future costs?
The best carers I've come across are 'home instead' or you could perhaps look into paying someone to live in? Both freeing you up to be his wife, not his carer and giving him the dignity that affords. Speak with your nearest hospice, some have hospice at home teams who are amazing and may be able to coordinate his care and support you both with counselling during this difficult time.

@lojojomo

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.

100% this.

If you're lucky you will have kind, competent, professional help.

If you're unlucky you will be lied to and gaslighted by the very people who you assume are on your side.

My own experience was the latter, smiling assassin Social Workers and CHC assessors.

Put your own oxygen mask on first OP.

He can claim pip and you get carers in for him? 4 times per day

Is there a local Hospice charity which may help? They were the absolute best when my dad was very ill, navigating NHS bureaucracy, telling us what we were entitled to, and helping us get the best care for my dad. I give them a monthly direct debit now, but their assistance was priceless.

@campion

The care won’t be free and you’ll need to weigh up whether it makes financial sense to pay someone else. Care at home isn’t cheap

The care will be free if they qualify for CHC. It isn't means tested and is dependent on meeting specified criteria. I downloaded all the forms and filled them in myself to compare with the official ones so that I was as fully informed as I could be. Along with having specialist legal help (which was worth every penny) it really does pay to do your homework as thoroughly as possible.

CHC is like rocking horse shit, like other pp we were stonewalled continually despite support from health care professionals. So few people get it, I don’t know why they even offer it any more.

Re funding: when my DM became ill and bedbound following a stroke, she still didn't get continuing health care despite being in a dreadful state, because the bar is so high.

Re care at home vs at a home/hospice: DM went in a nursing home, and I was able to visit her every day fitted in around work, to chat etc, and it was so much less stressful than if she'd been cared for at home. Even if you decide later to go for home care, I'd recommend a nursing home/hospice at first, because it's so stressful working and trying to sort all the paperwork out. You need to think of your health.

Do you have a friend or relative, or are your children old enough, to delegate as much of the paperwork as possible? Don't underestimate the stress of all the admin, on top of all the grief etc.

Don't think that going into a nursing home/hospice is somehow letting your husband down. My DM enjoyed her last two or three years in one, and had a lot of laughs with the staff, despite her pain etc.

So sorry you are in this horrible situation. When he does come home he will be entitled to Employment support allowance contribution based. Also he will be entitled to PIP. He should be fast tracked as it is terminal. You can get great advice about completing the forms from www.benefitsandwork.co.uk/

Make lists and when you contact anyone, get names and take notes. This will make the process easier. If at all possible use email as then it is traceable. It is all a bit of a minefield.

Don't take any emotional abuse from the hospital or SS. They need to provide care at home even if you are working from home, you are working and not available for care.

Best wishes.

@BatleyTownswomensGuild

If you are having to quit work to be his carer, wouldn't you be entitled to carers allowance? Agree with previous posters, speak to CAB, they will know all the obscure benefits you might be entitled to.

I'm so sorry, OP. What a dreadful time for you xx

Carers allowance is £60 a week

Also speak to your GP as it is them that fund care packages at home.

I don't think this is correct.
So sorry for your situation op

I second @Allergictoironing. Also work in pensions and would suggest you get some proper advice. The Pensions Advisory Service can also be really helpful for signposting you and you can approach your husband's pension scheme(s) for information about your options although they can't actually advise you. Really sorry to hear you are in this position and I hope you get some practical help and advice!

You are important in all of this too. Keep your job and insist on a care package being in place before your DH is released from hospital.

Speak to a financial planner to discuss your best pension and savings options.

Really sorry OP you are in an impossible situation but sounds like you are doing all you can to do what’s right for your family x

You don’t say which part of the UK you are in but

Firstly sorry for your situation, sending love

Secondly, ring and ask to speak to the charge nurse. Ask that he is assessed by the occupational therapist (he should be anyway but best to make sure) and make it clear he requires a package of care outwith what you are able to provide. It’s probably best for you to speak to the OT as part of the assessment. Make it clear to the charge nurse that this would be an unsafe discharge in its current form.

In Scotland patients can if assessed as needing it can get carers up to four times a day. However this isn’t always funded. You may have to contribute to the cost until your husbands savings go below the threshold. I imagine it’s somewhat similar in the rest of UK.

Ask about a hospital at home/hospital to home/bridging / virtual ward team, most places have one. They usually provide services for this scenario, but on a short term basis. (4-6 weeks ish)

I’m sorry to be suggestive like this but if your husband has cancer, speak to his macmillan nurse about what can be offered at home.

District nurses may also be involved, but only if referred to and only if appropriate. They usually provide input towards the end of life, as well as with wound care, catheter and diabetes management. They are a drastically busy service though, with lots of referrals so they may not be involved at this stage.

I second the suggestion about a hospice, however hospice beds are very very scarce. But they do provide symptom management with the view to being discharged home afterwards.

If you do not feel the senior nursing team on the ward is listening, escalate to the discharge team (may be slightly differently named), or PALS.

Residential care is also an option but very expensive, and the same threshold type rules apply.

There’s lots of good suggestions here and I’m sorry you are in this scenario, the ward nurses will also be wading through lots of red tape and will be trying their best with a lot of pressure from senior management.

In scenarios that sound kind of similar I’ve seen patients be discharged home with one of the bridging/ virtual ward teams provide nursing and care for 6 weeks before being taken over by a package of care 4 times a day (up to one hour each time).Care above and beyond this was usually additional carers funded by the family. As nurses we are always sorry for families to be in this scenario.

Carers would usually help with washing, dressing and personal care, as well as going to the toilet. However only in the times that they are there.

If you feel your husband needs 24/7 residential care may be the best option, unless you can afford a live in carer?

Sending my love x

In Scotland funding and organisation was usually adult social worker and OT, working with local council. The hospital would refer to these services.

Have you chatted to his employers? If he is still contractually linked to the company they may have lots of ways they can help via his employee benefits. critical illness insurance cover, ill health retirements etc. I’m sorry if that isn’t relevant - I just remember someone once saying to me that she wished families would get in touch more in these situations as they had several ways to help.

No , it’s not at all unreasonable to want to work and have your own sanity
Also , realistically free home care will be hard to come by
If not impossible
You might need to cash in some of his pension and saving to fund for a carer to come in when you are at work

I’m really sorry for this news

If it helps at all OP, although PIP is a sod to fill in, because of his medical needs most of the supporting documentation will be pretty straight forward. Ours was approved in a couple of weeks (because it was an obvious medical need, and unequivocal). We didn't have to do a phone interview because of this, which I imagine would be a similar case. (plus covid stopping interviews)

@heartshapedskull your dad doesn’t have PSP does he? My dsis had this and received CHC which helped a lot.

My apologies for pushing this but has the op said what the medical condition is? That information could help posters advise based on knowledge/ experience.

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

The doctors won't know what care is available and IME some of them simply don't care - their target is to clear beds.

OP others have described what should happen with local discharge team, ongoing care assessments etc. However what you actually get will be a fraction of that and you have to fight for every tiny farthing.

I would recommend:

• split your problems. Look into all the finances (any employement/permanent health insurance DH has, PIP claim, attendance allowance (for overnight, not just day time). Don't push aside your own financial security because you are too busy

• consider putting some of your savings into your pension plan as a one off contribution. this may be questioned when DH is means tested but expenditure to manage this situation is reasonable up to a point - get local advice on current reasonable levels

• join carers' groups for tips managing issues in your local area (the endless rules also vary endlessly by commisioning group and local authority)

• be prepared to fight endlessly to get any help at all

• if he is assessed as eligible for funded health care at home keep a close eye on it until you are satisfied its working

• if they call it "social care" to avoid funding it then fight it but if you cannot change it consider private social care rather than agency. I didn't know this existed until we needed to arrange it but we were able to get much better, more reliable and consistent care from an independent than via the standard LA agencies (and it was a lower hourly rate so more hours could be bought)

• consider if he will need hospice care toward the end and start discussing/planning this sooner rather than later

• you will need to keep working, anything you can do to keep working somehow will help you in future years. eg is there an option to take some sabbatical/carers leave and then work part time until he dies?

• Powers of attorney for financial and health decisions (you need two)

• if friends offer help, take it. Don't feel bad about accepting all and any offers of help, you will need it before this is over

Good luck with it all - the support available for people in both his and your situations is a disgrace in the world's 6th largest economy.

I'm so sorry that you & your Husband find yourselves in this incredibly difficult situation

You are right to flag the issue of your savings. It's a while since I've worked in discharge so things may have changed - please double check my advice here, but the categories certainly used to be.

• Continuing health care - means tested
• free nursing care which is not means tested, usually linked with CHC so there may be some package elements eligible for funding and not others
• End of life care for those with a devastating/deteriorating diagnosis. Also not means tested.

What this means is that if you have savings above the means testing limit, your husband needs to qualify for the FNC or end of life element, often referred to as FastTrack.

The nursing element might cover things like nutrition & safety, but wouldn't usually cover personal care.

Having said that if you apply to panel for FNC / fast track and are turned down, you have up to 7 years afterwards to apply to the ombudsman for appeal, so potentially if you use your savings it isn't the final position.

My best advice is to push the assessment that goes to panel really hard and make sure it is as detailed as possible.

Honestly?

I would consider filing for divorce and moving half the assets, your assets, into your name.

I'm not saying stop loving him, stop helping him, or not caring for him. But I am saying protect yourself: keep your job, demand SC make appropriate provision for care, even though it will have to be paid for from your'his end, and force them to follow through before he's allowed to leave the hospital. Ask about a hospice placement or another care facility instead of coming home as well. Make it clear you can't and won't give up your job to care for him because you can't.

Good luck. I'm so sorry this is happening to you and your husband.

I would worry that filing for divorce would just make everything more complicated further down the line when your DP passes away.

How are you feeling this afternoon OP?

I am blown away at the (thankfully few) posters on here who seem to think the OP ought to stop work and provide round the clock medical and intimate care for her husband. It is something neither dh or I would want for our other halves. Especially with young adult children, mortgage, full time work all still in the mix.

I hope you are able to use the amazing advice given through this thread to establish a proper at home or at hospice set up that gets dh the medical/care attention he needs from a professional, whilst being able to retain some semblance of normality in what must be a crazy time for you right now.

Her assets remain her assets @WeAreShiningStars. Joint assets will take into account his share only.