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.

I don’t ‘know’ for sure but I’m pretty confident pension pots can’t be taken into account as savings when assessing your need for funded care. Now might be a very good time (after taking some advice) to dump as much of your savings as tip the threshold into your personal pension fund.

I’d do whatever you have to to make sure you stay just under the threshold and do not give an inch on leaving your job. They will emotionally blackmail and make you feel awful. They don’t have enough resources or funding so act like it it’s literally coming out of their own wage.

I would tell them you and DH were ‘separated but cohabiting’ pre illness before I let them push me into quitting my job. Obviously not true but you’ll find they put a lot less effort into trying to pull on your emotions if they think you’re already somewhat detached. They’ll just focus more on practicality.

First of all take some time off work to give yourself a break, maybe just a couple of days.

Do as much research as you can as to what is available to your DH, move money into your name although if the house is joint and has equity this will be taken into account t anyway so might be futile.

Look at drawing down on pension, this can be done from age 55, what if any life insurance DH has and if it will pay out now due to his diagnosis.

Tell the hospital staff there is no way he can come home as you have DC at home, work and cannot care for DH adequately.

Contact adult social services and CAB for advice.

Last but not least, put your own needs above others, you are the most important.

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

Windchangeface Pensions aren't included, the house you live in won't be included (for now although they can put a charge against it if and when you pass away yourself but I can't imagine they would wait 30 years for that pay out), our council just has a form and didn't ask for any evidence of anything, so personally I would shuffle my savings right now. I don't think councils have the time or energy to go round establishing deprivation of assets. I might be wrong though, I'm just going of what happened in my case which was we filled in a form and then two weeks later got a reply saying we didn't have to pay (I did have income but they allow for quite a healthy amount to be kept).

@bluebluezoo

However, even if I could live on that, it's not going to keep paying once DH goes and I still don't have a job

Talk to work about a career break. Most will give you at least a year with the right to come back into a post equal to your old role if not the same role.

"Most" ? Really? I don't think many employers are in a position to do that

That said my employers are being very good and I'm more or less coming and going as I please for now . WFH helps, but doesn't help if people are assessing who's at home to care for him.

TBH, my most pressing need atm is for a hug, anyone would do and I can't even have that.

Don't be such a knob Pringlemonster
The op and her husband are in their 50s, not their 80s and she's just had the rug pulled out from under her and her world turned upside down.

Sympathies op I don't have much advice other than being insistent on seeing the care package and making it clear you will need to work. My parents were in a similar position looking after a relative and my mum had to become a stone cold bitch to get anything done. She just smiled and said "No that won't work for us" over and over. They got him the care he needed eventually but I do think there is an assumption the female relative will just have to do it

Hugs to you, OP. I know it's from a stranger, but I've trodden this path, it's a hard one and you are right, hugs and support are very important!

As I say, I know you want your husband to be home with you, and that's probably what he wants, but a care/nursing home may end up being the better option at some point, just because the care support isn't always there at home. Once it gets beyond what a care package of people popping in 3 times a day can do (and it easily can if the person is incontinent) then the council will prefer a nursing home as it's actually cheaper. They may make you pay for better options as well or for the whole darn lot.

I would take some time to research your options and reach out to friends and family and tell them how you are feeling.

It's so awful when your plans go so very wrong. Just think though- because of your hard work and his hard work to this point, you can afford to fund a better and nicer time that you do have, than if you have nothing (people with nothing get the basic nursing home and no choices to top up care). I know it's not what you planned, but it is a comfort to have some choices which will really make a difference in the coming years.

Where are you, I would give you a hug.
Make a plan.
1 contact citizens advice
2 contact carers uk www.carersuk.org/
3 allow them to support you. They are the experts they will guide you through the process emotionally and practically.
You don't need to give up work, you don't have to do his personal care. You are right to protect your financial position.

Could you speak to your work about possibly going for reduced hours/PT while he's ill? I never thought mine would have allowed it (big company, lots of rules) when my mum was ill, but they actually did. I went back to FT when I was ready.

I don't think councils have the time or energy to go round establishing deprivation of assets.

They absolutely do, and will pursue it for a long time if confident there has been a deprivation. Financially councils cannot afford to be paying for care that they are not required to. Obviously every council is different but in my experience most will look very closely at deprivation of assets. It’s why it’s worth getting financial advice from someone with expertise in this area before moving any money OR drawing down DH’s pension, as once it becomes income it will be considered for the purpose of calculating his contribution to the cost of care.

Actually, most of the "cash" savings are already in my name, each time we paid a lump sum into DH's pension we paid an equal sum into ISAs in my name, the idea being to give some flexibility to fund early retirement without drawing our pensions. So maybe it won't be as bad as it seems. Presumably he can still make payments to his pension now?

Are you married OP? Surely then it doesn't matter who's name the cash savings are in?? It is technically a part of his assets too. Or am I wrong??

Are you married OP? Surely then it doesn't matter who's name the cash savings are in?? It is technically a part of his assets too. Or am I wrong??

This is not correct, the person is assessed as an individual (but joint assets can be included). The OP's savings will not be included.

www.ageuk.org.uk/information-advice/care/paying-for-care/paying-for-homecare/

It might be worth ringing the Age UK hotline and asking them about all of these details, it's quite a complicated area.

It does matter, though a savvy financial assessment team may take a hard look at any arrangements for savings.

Which? has a useful breakdown here of what’s considered for an assessment www.which.co.uk/later-life-care/financing-care/home-care-finance/local-authority-funding-for-home-care-a116w2u6nbul including the rules for couples.

Make a claim for PIP now . As long as he has had difficulties for 3 months he will qualify.

He would be entitled to Attendance Allowance I 'm sure - I don't think it's means tested.

Having re-read your OP and seen your husband is bed bound completely and has no mobility, I'm thinking that a care/nursing home may be a better option. It is very difficult to care for a bed bound person on your own as you need to lift them, get hoists, have more than one carer for some bed changes and so forth. Often councils will not fund enough care for this type of caring, two people a couple of times a day may not be enough.

Sorry to say this to you, and I'm sure what you want is him home, but when someone has absolutely no independence, and cannot toilet or feed themselves (e.g. get food or drink) then long-term this is very difficult to manage if you are working full time. I think it's ok to do it if they are close to the end, because you know it's a finite time, but if it might be for years, and given it might involve night care as well which won't be covered, I would very much start talking to your husband about what type of care he would like.

No-one wants to go in a nursing home, and he may be horrified even by the conversation, but it might be worth thinking about looking for somewhere really great now rather than struggling with him at home for a couple of months and then making the move.

I'm so sorry for you, this isnt' the lovely retirement plan you wanted, but I just wonder if caring for a bedbound person if you can't be the carer and your husband doesn't want you to do toileting is even at all feasible. My husband didn't go in the end as he had additional difficulties, but the council found him a very nice nursing home and it is sometimes cheaper than huge amounts of home care (which is why they often push you in that direction unless you are prepared to do the care yourself at home).

Atm he is actually happier in hospital because he feels there better placed to care for him and I think in normal circumstances residential care might be better, but dying for 2 years with no visitors? Where's the quality of life?

yes, he should get attendance allowance. you need to check his benefits OP. Statutory Sick pay / ESA / Universal Credit... all might be applicable. Have a look at www.gov.uk, search for attendance allowance and a lot is linked from there.

Firstly I am very sorry that you find yourself in this position . I had a similar challenge several years ago with caring for a terminally ill family member, in my case terminal cancer. I found Macmillan really good for advice, one thing they helped us put together was a really good palliative care plan including equipment, nursing and care support etc. The strong advice was to agree this before the relative comes home. For work, I agreed with my very good employer that for a time I would work part time and some further time from home as well. I did discuss taking a sabbatical which would also have been acceptable. In a practical sense does your DH have life insurance? If he is now terminally ill then there may be a terminal clause that allows you to claim now, which might provide additional support. If not you can borrow against the receipt at this stage. Please remember you will need support. I went into deep practical mode to start with, and a couple of months in a combination of grief and shock hit my like running into a wall, so make sure you have people you can talk this through with.

sorry, need to change that, didn't realise attendance allowance only applicable if he has reached retirement age.

I didn't realise attendance allowance was only for the retired either - apologies

There is a form the GP fills in called DS1500 for those without long to live that allows access to certain benefits - I don't know the details

As you are married, in terms of IHT this would be absolutely fine, and won't expose you there, and from a practical perspective would mean one less thing to do when the time comes.

However, if you are looking at applying for funding for his care, make sure that deprivation of assets doesn't come into it. You can keep half the savings in your name and as you will still be living in the house, they will not be able to force you to sell it.

Investigate whether you would be eligible for ongoing health care funding - the criteria is very strict however so you may not get this, especially if his needs are 'predictable', even if he is bed bound.

Get LPA in place for finances and medical decisions now.

Re the pensions, ask the funds whether a terminal diagnosis will change when you can take them, and how you can take them. There is a little known trick that if someone dies with their DC pension untouched before they are 75, their spouse is able to take the income from this without it being taxed. You will get on first name terms with the tax office, as it's not well known and the pension funds won't do it automatically, but it's there - my mum discovered this after my dad died.

If you end up funding his care, you can get annuities for this to mitigate the cost - but look at the numbers realistically, it may be better to pay as you go.

Finally, as a pp has said, the hospital / social care world will play on your heartstrings to get him out of there and off their lists and therefore not their problem any more. Unless you are completely happy with the situation, don't be afraid to become a cold hearted b!tch and turn around and say No, that's not possible, that doesn't work. My mum had to do that a lot after my dad had his stroke aged 55, and we fully supported her in that. They will try and push you on this but legally they cannot move him on until you are happy with the situation. Get the assessments done, take the time to think about what will work for you, look at your finances carefully and investigate insurance / payouts / etc.

So sorry that you're having to deal with this and are having to think about this all, particularly at this time. It's not easy

you need to really emphasise that you will not be available for doing care as it is much easier for them if they can guilt you into it. (poster above said it like I wanted to... yes you have to become hard as nails and not care looking like you do not care. it has the possibility of breaking you if you do all the care and no-one will step in. be clear from the outset you will not be doing it)