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 am so sorry

Your savings may not need to come into it if he is being discharged from hospital due to lack of progress, as someone said above if it’s a clinical decision not a social care one.

Although on the other hand your well placed to at least choose the care he receives.

I’ve unfortunately had dealings with the care sector and you will have to push and push that it’s not down to you, that your working and have to remain working. You may come across some harsh judgement from nurses and doctors. But they aren’t in your shoes. I do think there comes a point where you need to be his wife and not a carer.

My DH was discharged from hospital with a few days to live, the hospital sorted out a bed, and carers x 4 a day. This was only 2 weeks ago so Covid hasn't stopped anything. We are also ' comfortable' and money was never mentioned.

With my FIL on discharge from hospital he was given 6 weeks free care then he paid thereafter for drop in visits etc .

Can’t really give you any advice, but it looks like you are getting plenty of good advice here. Just remember you matter, and you must hold on to this, as it looks like you could, if you weren’t careful be railroaded into all sorts of unsuitable scenarios. Your work will give you purpose in the future. You will need this more than you realise at the moment.
Sending you a virtual hug

So sorry OP

Absolutely agree with those saying don’t budge an inch on this and definitely keep your job. One of my grandparents was injured whilst in hospital and subsequently lost mobility. My 78 year old mum was put under huge pressure to become her carer as apparently she didn’t have any other commitments!

@Toorapid

I suppose it's too late to start moving savings into my name? Something I would frown upon really, but desperate times...

please don't do this. It's an intentional deprivation of assets and taken very seriously.

You don't need to give up work, you need to arrange a care package for your husband. He will be entitled to up to 6 weeks of care after leaving hospital. During this time he should have an assessment from ASC. That will help determine the level of care needed to support him.

I'm very sorry you are going through this.

@Toorapid I completely understand the predicament you are in. My husband died late last year. He had been unwell for many years and was medically retired. When he took ill, 12 years ago, it had been “presumed” that I would give up work to look after him and I was made to feel like an utter bitch by his parents and sister for refusing to do so! However I had no choice, other than to continue working as we had 2 children still at school and we needed the money.

Unfortunately, I was involved in an accident and was also medically retired 3 years ago. We weren’t well off, but managed to get by with our pensions, his ESA and my PIP award. His death means that the ESA has stopped, plus the money I now get from his pension has been reduced to a 3rd of what it was. I am now left with less than half of the income we had when he was alive. To make things worse, his previous employers pension package guaranteed a lump sum of just over £80k on his death, if he died before he was 60. He died 6 months after his 60th birthday!

Things are really unfair in these kind of circumstances, as not only are you struggling to cope with your dh’s illness and prognosis, but you are having to deal with all that as well as having a much reduced income.

The only advice I can give is do not, under any circumstances, give up work as you will need the income when he dies. Do not let anyone make you feel guilty for continuing to work, you have to look to your own future. I know you will want to be there for him, but you also need to be there for yourself and your own future! It’s really hard (understatement of the year) losing your soul mate, but having no job or money makes it so much more difficult to bear.
For you

I'm really sorry you're going through this, OP.
Firstly, I know you haven't mentioned the condition your DH has, but if you haven't already, look into the organisations / charities for the specific condition (ie Macmiillan, MS Society). They will have loads of resources useful for you and your DH.

The team discharging your DH will not expect you to provide all care for your husband. It sounds like he has high level care needs that would require two people for a lot of tasks anyway. But, realistically, social services only provide up to four visits a day, so there will be times in the day when he is alone. That's fine, lots of people are in the same situation. The team working with him should put plans in place to ensure he's safe between care calls, they can use tech such as Telecare to support this.
He may be entitled to CHC funding, but only if he has specific health as well as social care needs. Being fully dependent for all care needs does not mean that CHC funding is a given.
Care provided by social services will be means tested. You may get the first six weeks for free, but following that your DH will be expected to pay.
From what you have said, rehab doesn't sound like an option, but ensure the team are sure that they would not expect him to make any further functional gains. If they do, he could be offered rehab either as an inpatient or at home, depending on what is available in your area.
If he's now bedbound, then he would need a therapy assessment for discharge, to ensure he is set up with all the equipment he needs.
Due to covid, hospitals are using a "discharge to assess" model. Which means most of the assessment is done after discharge. It allows people people to be discharged more quickly and reduces the risk of them getting a hospital acquired infection. However, this doesn't mean that solid discharge plans won't be made before he leaves hospital.
You need to have a meeting with the MDT involved, including the SW and OT.
I wish you lots of luck

I know it seems daunting. It might help if you make a list:

Hospital - carers at home; rehab unit; palliative/hospice care
Your work - leave for dependents/caring
Lawyer - legal situation concerning moving savings etc
DH's work - leave; any packages available for ill/terminal staff; pensions
You - support group; counselling

It all very much depends on his care pathway; your area; local resources. At this stage, I'd say don't wed yourself too tightly to any path. Just now, you want to keep working. That may change or it may not but you need to be conscious of your mental and physical health. Be open to what the conversations will bring you and to your needs and views changing. Having been in your situation (with a parent rather than a partner) feeling tied to working ended up not being the positive I thought it would be.

I am really sorry you are in this position. Please excuse if I am talking rubbish, but would it be possible to cash some of his pension to pay for care costs at home that enable you to keep working?

I understand that many of these cash your pension schemes are likely to be scams but perhaps there should be something that can be done if speaking to the pension schemes he is part of.

OP Here's a hug.
Lots of excellent advice on here, take your time to go through it.
My two pennorth.
I haven't seen whether LPA has been mentioned. If you don't have one now then get that set up asap while your DH still has capacity. Normally I would say do it yourself but you have enough on your plate. Get a solicitor to do it.
I second Hospice. They really do help people who are not yet at end of life.
As to the discharge, make sure you or DH do not agree to anything that you don't think is adequate. Make it clear there is no carer at home. My mother had carers 4 times a day and it really wasn't enough. Sometimes employing full time carers is a better option.

Also look at the elderly parents topic. Many, many posters with a wealth of experience dealing with this sort of thing.www.mumsnet.com/Talk/elderly_parents

@Toorapid

Thank you.

If nothing else, I've become clear in my mind that I must keep working and I will be stroppy if need be to make that happen. I'll be horrible if I feel I've been forced to give up everything to care for him and that won't do him (or DC) any good .

Yes, I think you are 100% right here. It's not just about the next two years but about where you are after that and who you are. It is not fair or necessary for you to lose your career as well as your husband (and it will not be easy to get a job afterwards).

Be strong with those who feel you 'should' become a full time carer. If you continue to work (albeit probably part time) you will most likely have a better quality of time with your husband when you're together too.

You should be entitled to at least 6 weeks care when he's discharged from hospital. Whatever condition or illness he's suffering from should have an Association or charity. It would be worth getting in touch with them for advice. And hospice care also might be a possibility. Or long term NHS care which is available for certain conditions that need nursing. I dong think you should give up your job then you'd have no money coming in.

@TippledPink

You can request a social services referral whilst he is still in hospital so they can assess what care package he needs. It sounds like his savings are over £23,250 though so he will be paying the full cost of his care.

This. 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.

I haven't had time to RTFT, but when it comes to organising care, it's probably worth knowing that even if you're self funding, there are serious staff shortages.

We've been trying to get additional self-funded care in for an elderly relative for months. Staff shortages mean that we've managed to source very little help - a grand total of 3 visits per week - leaving the family carer to do the lion's share of the work. This is despite the district nurse threatening social services referral if we don't get additional care in (DN has a point TBH, I just wish it were that simple).

Make sure you've identified a care agency that says it can supply adequate carers before accepting him home.

Local authorities will do almost ANYTHING to wriggle out of their responsibilities, OP employing tactics that would make Donald Trumo look like a saint, I’m afraid

Stand your ground - do not be bullied, manipulated, guilted. Try to find an advocacy service to help you

Be prepared for a fight to get anything that actually meets yours and DHs needs

Sadly this is true. We had to get a lawyer to write letters and basically force them. And you have to REFUSE to have the person home.

Don’t whatever you do ask for unpaid leave from work, have him home and then ask for support when you find out you can’t cope. They will say no or stall you for months.

You have the most negotiating power now so use it. I know this is horrible thing to say when your husband is terminally ill and your future has been turned upside down.

But I’m afraid it’s true. They don’t care about you or your husband - all they care about is saving money.

I’m so sorry.

Lots of useful advice here. When we were in a similar position with my DM we found a specialist solicitor who was really helpful in joining all the dots.
She got CHC but only because we knew about it; the hospital inter disciplinary team were a bit shocked when we raised it! They evidently had no intention of telling us about it.

You need to stand your ground and don't agree to anything before you've explored all possibilities and entitlements.
It's exhausting but you need to think of yourself and your future as well as what is best (obviously) for your DH.
Sorry you're having to go through all this

Seconding Carers UK as a good source of advice:

www.carersuk.org/help-and-advice

Also any specialist charities in your husband's condition - if it's 'cancer' (meaning that generically) then MacMillan's has a good advice line.

www.macmillan.org.uk/cancer-information-and-support/get-help/financial-help

How soon do you think they will want to discharge him?

Have you considered a live-in carer?

DH will clearly have significant care needs, and from what you've said you will be funding his care. There will be social services at the hospital so find out about them and start talking to them asap. Even though you are self funding they will be involved in his discharge.

But also maybe start talking to some of the local care agencies who focus on self-funded care - they are used to assessing people for care needs and good care agency managers are excellent sounding boards.

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.

You have to stop beating yourself up. You are not awful for considering the financial implications for yourself. This is the real world, not a Hollywood movie, and out here love does not conquer all and see you through all things. It is not often some last minute situation saver shows up neither. It is terrible to know you are going to lose your DH without being expected by local authority social care to give up everything and leave yourself jobless and broke. I feel you are going to need to strongly embrace the word "no" in the very near future.

Sorry to hear of your painful situation, best of luck to you in getting through it.

@mrdobalinamrbobdobalina that's amazing advice and fits with what I was offered.

Ref pension, if he has any final salary pensions that would disappear on his death, you could get financial advice and have them converted to personal schemes so you'd get the capital value (cash transfer value).

While this is almost never suggested or advisable it's quite possible that this is one situation where the advice would be to do it (I've come across a similar decision with a widower whose late wife's final salary pension was enough for him to live on so he converted his fs so it could be bequeathed in his will to his kids and also he had the cash if he needed it).

for you. Similar situation here but with additional hassle of being made redundant last month so my redundancy payment will be used to pay his carers.
If your DH has life insurance is there a provision for life limiting illness cash lump sum? This could fund carers?
Sort out POA (health and finances) and joint finances now so you can see your cashflow. Could you go part time? 4 visits a day is max youll get unless you can employ a live in carer.

@Pringlemonster Your name is 100% appropriate-have you any compassion,you uncaring,unfeeling monster?