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.

Yes, but I need a reliable car in the rain.

Steady there. You're in shock and that's not the best place to make decisions.

You may find that money is not the concern you thought it would be. Get a friend to help you go through paperwork. Pensions pay out at death before pensionable age, but he needs to put you as beneficiary or paperwork gets messy. You may have taken out insurance for the mortgage in case one of you dies - it's quite often included by the bank. There may be life insurance. If he's still in work on long term sick there will be death in service. Don't panic about money at this point.

Ask the hospital for a CHC assessment, depending on what's wrong his care may be free. Where I work the most care is 4 visits a day. We have bed bound patient with 4 calls a day. The spouse works as they are similar age to you. The carers let themselves in with a key safe. Unfortunately there is not much over night care available and a lot of the evening things, such as medication may be left to you.

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

Call the hospital switchboard and ask to speak with a a discharge coordinator or discharge social worker.
If that doesn't get you anywhere then call the local authority and ask to speak with the hospital discharge team urgently, they'll have a duty worker who will be able to speak to.

In terms of what you can do, because you have savings, you could if you wanted to, organise your own care package, you just need to know what he need- the OT is the best person to tell you this.

Alternatively you can wait until discharge team contacts you.

Regarding the car, does DH need a car? Not do the family need one. It could be seen as in appropriate use of funds.

Do you have power of attorney for health and welfare? If not, get that sorted asap- as well as for finances. Lots of people only do it for finances! Sounds like DH has capacity currently but that can change quickly so get it sorted asap.

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.

You have to consider how a non-driver would cope, or a person without someone living with them or where they have no informal carer at all. A car is not necessary for the DH.

Thing relating to maintaining the home however are likely to be considered legitimate.

The car stuff is fine. You were planning to buy one anyway. Go ahead and buy one if you need to! There are no higher powers going to come and take it away. Your money, your choice.

Sorry to hear you are in this situation. I believe Age Concern may give advice on such situations. Hospital beds are in such short supply that they may try to discharge him if they think you will cope so you need to be very assertive that you cannot possibly cope. It was my understanding that if someone needs nursing care then the NHS should provide it or pay for it.
Attendance allowance is not means tested so if your DH does come home apply immediately for higher rate by phone (backdated to time of call) but they send a form for completion within 6 weeks. But the bottom line is that a proper assessment of his care needs should be done before he is discharged so keep insisting on that.

Sorry just realised atttendance allowance only applies to people of state pension age.

Annex E here talks about deprivation of assets, you’ll see it’s not clear cut www.gov.uk/government/publications/care-act-statutory-guidance/care-and-support-statutory-guidance

There are many factors to weigh up. Buying a second hand car for a couple of grand versus buying a £30k all singing all dancing new car would likely lead to a different set of questions. Also looking at where the funds come from to buy the car (from sole or joint accounts), whether your DH will have use/access to it, whether there was evidence you were already thinking about replacing the car before he became sick, etc etc. Impossible to say without someone properly trained taking a look at your financials. I’d hesitate until you know more. As it is already clear your DH will have a need for care, any significant financial transaction from this point forward could come in for scrutiny. And it may all be irrelevant if he qualifies for CHC.

www.ageuk.org.uk/information-advice/care/arranging-care/homecare/support-after-hospital-discharge/

This link looks useful

It was my understanding that if someone needs nursing care then the NHS should provide it or pay for it.

It depends on lots of factors. In a nursing home the NHS pays a nursing element (about £150 per week) the rest is the care component which is means tested as per social care.

If someone's care needs are such that only nurses can carry out all of the care, then that falls under CHC, whether this is someone's home or in a residential setting.

Often times when someone lives in their own home, homecare is separated in to social care and nursing care. The nursing care is provided by district nurses and the care element by carers organised by with the LA or privately. The nursing care is covered by the NHS, the rest is chargeable.

I'm sorry you are going through this. I haven't read the whole thread but wondered if you husband has critical health care insurance? If he does you might get a lump sum that would pay for carers etc

@Redburnett

Sorry to hear you are in this situation. I believe Age Concern may give advice on such situations. Hospital beds are in such short supply that they may try to discharge him if they think you will cope so you need to be very assertive that you cannot possibly cope. It was my understanding that if someone needs nursing care then the NHS should provide it or pay for it. Attendance allowance is not means tested so if your DH does come home apply immediately for higher rate by phone (backdated to time of call) but they send a form for completion within 6 weeks. But the bottom line is that a proper assessment of his care needs should be done before he is discharged so keep insisting on that.

It is highly unlikely that they will discharge someone who is bed bound with cancer related pain and who needs all their care to be carried out in bed home without a suitable hospital bed. Sometimes stocks run low, but it would seem as essential for discharge, so they would wait.

Well, regardless, I'm going to have to buy a car, so it doesn't really matter if they want the money back, I'll have to cross that bridge when I come to it.

If, very sadly, the OP's DH doesn't have so long to live, it may be unlikely it will get down to deprivation of assets, as his assets in this case are perhaps likely to last for longer than the two years. If, say, it costs £1,000 a week (bearing in mind the NHS will pay for the nursing component), over two years, that would come to say £100,000, but his assets will probably be more than this?

Someone else with more knowledge may know more.

have you looked at local hospice? sometimes they are much better placed, and not all are 'end of life' type places

If you and the children are in the house I do not believe they will look at it in regards to assets. Its only when the second partner needs care that it is taken into account.

He cant get attendance, but as you have stated, he can get PIP. It may be worth you asking on the elderly parents topic because, although he is not elderly, they will have alot of experience in how to ensure care packages, etc are put in place.

Apologies if some of this has already been covered but i don't have time to RTFT.

I used to work as a Macmillan benefits adviser.

I would call Macmillan first of all who can offer benefits advice over the phone and help with things such as PIP form filling.

I would also speak to your husband's medical professionals and ask if they are willing to compete a DS1500. Working out how long someone has left is not an exact science and they may be happy to complete a DS1500 in these circumstances.

This will make the whole process quicker much easier for both of you.

He is also likely to eligible for new style ESA if he's not receiving SSP. I assume you've already checked for income protection policies (through work or otherwise) and/or whether any terminal illness cover on any life insurance is payable (usually needs to be within a year but worth checking).

New style ESA is paid based on the NI conts paid in certain.tax years. It can be backdated by up to three months. If he was working in the 17/18 and 18/19 tax years then backdate for the full 3 months so it starts in 2020. If the claim starts in 2021 then DWP will look at the 18/19 and 19/20 tax years instead. New style ESA can't start until SSP has ended.

If he's had chemo or radio he shouldn't need an assessment and should automatically qualify for the "Support Group" which means he'll get an extra £39.20 a week after the first three months( on top of the £74.35pw).

If you have to stop work to care for him temporarily then you may also be eligible for carers alllowance. It's not means tested but you can't earn over £128pw while claiming.

He should also be eligible for a blue badge. Macmillan can also help you claim this.

Also look into NHS continuing care as you may qualify for some free care paid for by the NHS. You may have to fight for this sadly. He would need some clinical care I understand.

Do not allow him to leave hospital without an appropriate care plan in place that you are happy with. If you say you can manage it even if you can't then they will say he has care in place and further support isn't needed. Once he's left hospital they have no responsibility to ensure care is available. You then have to go through social services which can take months.

Have a look at this.

www.carersuk.org/help-and-advice/practical-support/coming-out-of-hospital

Carers UK is a great organisation to contact for loads of different tutors support for you.

Also speak to your GP regarding whether a hospice referral is appropriate. They offer all sorts of support for people with a terminal diagnosis and their carers (respite, day hospice, carers/support groups, counselling, benefits advice etc etc) They don't just do end of life care.

Sorry you are having to cope with this. So hard. 💐💐💐💐

It was my understanding that if someone needs nursing care then the NHS should provide it or pay for it.

some and some. A care home or a care package is divided into nursing care (such as the pain management, any IV stuff, any treatments) and personal care (such as washing, dressing, food provision, toileting)

the medical stuff is NHS funded. The other stuff is chargeable and means tested. Even in a nursing home

If you and the children are in the house I do not believe they will look at it in regards to assets. Its only when the second partner needs care that it is taken into account

I’m very sorry to say that isn’t true. The other partner has to be over 60 for this to be the case.

So, I live in a very ordinary house, which they wont make me sell, but would take back any money owed when it is sold? So I could live for another 40 years and I can never move? I.e. I wouldn't have enough equity to buy elsewhere.

@VinylDetective you are incorrect. A spouse does not need to be over 60.

www.ageuk.org.uk/information-advice/care/paying-for-care/paying-for-a-care-home/do-i-have-to-sell-my-home-to-pay-for-care/

[quote buttheywereonlysatellites]@VinylDetective you are incorrect. A spouse does not need to be over 60.

www.ageuk.org.uk/information-advice/care/paying-for-care/paying-for-a-care-home/do-i-have-to-sell-my-home-to-pay-for-care/[/quote]
You’re entirely right. I apologise.

The hospital is not allowed to discharge him without a proper care plan in place. And that care plan MUST take into account that you will be working and cannot do the bulk of the care. You are allowed to say that you do not want to be doing his personal care. No-one can make you do this.

He could be entitled to have his care paid for by the health service via continuing health care funding - talk to Beacon - www.beaconchc.co.uk/ They will be able to advise.

I have recently been through all this with my OH - he died on Feb. 1st last year. Do feel free to PM me.

I am sorry that you find yourself in this situation - I really do know how stressful it can be.

@VinylDetective NP 
@Toorapid this fact sheet it really helpful in explaining it. Yes you could move.

https://www.ageuk.org.uk/globalassets/age-uk/documents/factsheets/fs38propertyyandpayinggforresidentiallcarefcs.pdf

NettleTea - that's the theory - the practice is a a great deal more complicated.