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Original poster

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

412 replies

Toorapid · 02/02/2021 07:57

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 posts:
Mumski45 · 02/02/2021 08:22

You need to look into CHC (continuing health care) which is not means tested. If his medical needs are high enough he should qualify. As a pp said he should be discharged under a "discharge to assess" scheme whereby his care is paid for around 6 weeks and his needs fully assessed. This is usually into a care home but can be at home. I know you may not want it but I would try to ensure that this is done in a care home as if they send him home and you take time off to adjust then they may see that he is coping better than he would if you weren't there.

User7458 · 02/02/2021 08:24

Yes, maybe see about part time work as that would help greatly and also keep your job open for a full return

Moondust001 · 02/02/2021 08:24

PS - sorry to sound harsh, but if you aren't in a union, join one now. You won't get many benefits for now / the first six months, but in 18 months or so you will be a fully paid up member with a history and eligible for all benefits and support. My union, for example, has convalescent / respite homes to give people a rest, grants and other benefits.

Interested in this thread?

Then you might like threads about these subjects:

Families General money
Whalespeak · 02/02/2021 08:24

There's lots of talk about rehab beds, care homes etc but this is all very dependent on the situation. He may be adequately able to have an assesment in hospital thus wouldn't be entitled to some of the things used for older people (respite type placements) in this thread. Rehab wise this will be a clinical decision and not linked to social care funding.
Obviously if your home needs adaptions sometimes hospitals prefer people to wait in less intensive enviroments so people might end up in residential homes whilst work is completed

Is he under a palative care pathway?

CherryRoulade · 02/02/2021 08:25

You also need to have a discussion about lasting power of attorney. It makes life simpler, going forwards.

He can transfer money into a shared account, but it still counts towards financial assessments. As a married couple, it should be his part of the savings that count not all of it - regardless of the account it is in. As a wife half of the marital assets are yours (although a zealous or inexperienced social worker may not think about that). The house is safe from payments too. It’s a minefield. Do get decent advice.

PALS at the hospital are usually good at supporting and signposting people through the system and can be good advocates. They are worth a phone call to advise and put you in touch with the right people.

mootymoo · 02/02/2021 08:25

First of all I'm so sorry, my heart goes out to you and your family. A few practical things - you ask about care, they need to coordinate his discharge with adequate care, he should be entitled to nhs continuing care which crucially is not means tested, the hospital will have a team who's job it is to arrange this but it's worth asking for a meeting (no doubt virtually) ASAP to get the ball rolling.

He should also be entitled to contributory esa as he's worked until this point, plus pip which you know about, the helpline is quite helpful I've found, but feel free to pm me if you need help with the forms, unfortunately I'm quite experienced at them, and nhs continuing care.

Finally you need to check his pension arrangements, sometimes there's special rules in your circumstances eg can take a lump sum now, or it starts paying now, worth a call, they should have a bereavement team who are experts. Some pensions have a different arrangement if you don't reach pensionable age but they vary so much (I would get a substantial lump sum and a monthly pension immediately for the rest of my life

Whalespeak · 02/02/2021 08:26

Things like residential homes would also likely require a contribution from his savings.

Timeforabiscuit · 02/02/2021 08:26

I am so sorry you're in this position, and find it admirable that you're able to think clearly given the amount of truly terrible news you have at your door.

You know that giving up work is not an option, is your husband able to articulate what he wants? If he is not keen on you providing intimate care, he needs to state that clearly in any assessments. Other than that, assessment for a proper care package is essential, Im sure you've looked into it, but are you able to draw down any of your husbands pension early to fund some private care?

Wishing you strength.

Mumski45 · 02/02/2021 08:27

To those who are saying he will be assessed in hospital .There are not many assessments taking place in hospitals now and especially at the moment due to COVID as beds are needed for patients who need treatment. Patients who need assessment rather than treatment are being moved to other intermediate facilities - usually care homes but depends what is available.

nicknamehelp · 02/02/2021 08:32

I think even if you give up work if he needs 24/7care you will need to have help. I would ask to talk to hospital team about all his needs and what equipment he will need etc. I would also ask for a referral for hospice at home help as they are the best at advising.

partyatthepalace · 02/02/2021 08:37

I think you are absolutely right to be thinking as you are - you should have at least another 30 years of life left, and you need to plan for it. You do not want to be taking potentially 3 years off work and then trying to restart your career in your mid 50s.

As other PPs have said, hospitals are shockers for letting the family take the burden if they can get away with it. A friend of mine had this recently with her elderly mother - and actually it was the social worker who stood up to the OT and nurse manager and got her the right care plan.

Hopefully others will have more specific advice but usually there are ‘care paths’ - make sure your your DP gets on the one with maximum support from carers coming to your home etc. Make a lot of noise and make yourself a nuisance till he is. Stand firm on your financial situation - don’t give them any details, just say it’s impossible for you to give up work. Be like a broken record - they wouldn’t make this assumption if you were a bloke.

I think this is important to your DP as well as you, as you say, he doesn’t want you caring for him - and this next two years will be much nicer for him if life can continue as normal as far as possible, and he knows you have a decent future ahead of you.

Social service care may not be enough of course, but in which case I would look at your finances with a financial adviser to figure out how you can afford the extra care you need.

So sorry you are having such a rough time. I hope you have friends you can talk to?

Mumski45 · 02/02/2021 08:37

This is the most recent guidance about hospital discharges

www.gov.uk/government/collections/hospital-discharge-service-guidance

LIZS · 02/02/2021 08:38

He should get allocated an interim then community care team to assist with personal care, medical issues, food prep, ot/physio for rehab etc while a longer term package is sorted out. You need to be clear about your other commitments and limitations and this is not means tested.

bluebluezoo · 02/02/2021 08:47

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

Have you checked this? My understanding is occupational pensions also have a life insurance aspect, and pay out differently for death in service, if he was working when he became ill.

Do you have any endowments, life insurance etc? Some will pay out when the prognosis less than a year, so you may be able to claim and take a year career break to spend with your DH, and go back when things are calmer.

It seems harsh, i know. But getting your financials in order now will be much easier than trying to do it in the throes of grief. It will also take the weight off your mind knowing exactly where you stand, and how much you have as a cushion.

Original poster
Toorapid · 02/02/2021 08:50

So much to do, so much to think about. I think I might just have a melt down instead Sad

OP posts:
Lalliella · 02/02/2021 08:53

@Toorapid

I suppose it's too late to start moving savings into my name? Something I would frown upon really, but desperate times...
You need to take legal advice on this as it can be seen as deliberate deprivation of assets, but I think you can split your assets in half so that half are in his name and half in yours. Include your house in this. We did this when my dad was dying, so that only his half would go towards his care, then anything left over was left to me and DB and the other half to my mum.

I’m very sorry you are in this situation OP Flowers

SandSeaBeach · 02/02/2021 08:54

This reply has been deleted

This has been deleted by MNHQ for breaking our Talk Guidelines.

Lalliella · 02/02/2021 08:58

@User7458

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.

It wouldn’t all be tax-free, only 25% would be. Plus, it might be better not to take it and to keep it as a death benefit - which would be tax-free.

You need to get some advice OP.

InkyOctopus · 02/02/2021 08:58

this Is so tough for you. I’m sorry.

You need to check out pensions and life insurance ASAP. Do you have a useful sibling who could help you?

Lalliella · 02/02/2021 08:58

@Toorapid

So much to do, so much to think about. I think I might just have a melt down instead Sad
You would definitely not be unreasonable to do this. It’s an awful situation.
heartshapedskull · 02/02/2021 08:59

I feel for you, OP - I currently help my mum care for my dad, who has severe neurological issues similar to MND. Other posters have given good advice, but I felt I needed to ask what your husband has said he wants going forward? Does he want more time with you? I say this as sometimes the fear of not being financially stable can take over from the more basic needs - your husband may simply want to be home, in familiar surroundings with family who care for him, not just as a patient, but as a husband/best friend/co-conspirator/partner in crime/all round superhero... No amount of money can make up for that... or should make up for that...

DinosaurDiana · 02/02/2021 09:00

@Toorapid

I suppose it's too late to start moving savings into my name? Something I would frown upon really, but desperate times...
If it’s in a joint account I thought you could ?
user1471509900 · 02/02/2021 09:02

I was in a similar position three years ago. My husband needed full time care and we wanted him to be at home.
My employer gave me one day per week compassionate leave, members of my family looked after my husband two days a week and we paid for care for the other two days.
After he died, I was thankful that I still had my job as it gave me a purpose and I had the support of my colleagues. I am mid 50s and we had planned to retire this year so I understand what you are going through.

DaisyDreaming · 02/02/2021 09:05

Ask for a continuing health care assessment, it’s not means tested. Before the assessment do lots of research on it as you’ll have to fight and argue for every point!

Wineiscooling · 02/02/2021 09:06

Request an assessment for continuing healthcare. This means the NHS will fund his care not social services and is not means tested. However there is a strict criteria and he must have a level of health care needs not just social.