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.

Slightly off topic and I don't know anything about it really but colleagues of mine (generally mid-late 50's) have taken their pensions out of our company's final salary pension scheme (it's now closed) and put it in private pensions so they can ensure it doesn't disappear on death and can be passed to family. An IFA should be able to help.

Insist a continuing health care assessment is done prior to discharge this will assess his health needs and his social needs. Health needs will be payed by the NHS, social needs will be payed by dh. If health needs are significant enough he may get all care payed for. You also need to make sure they do the follow up reassessment (3 months after) in order for them to assess any changes in need.
Also request a home assessment they will provide equipment you may need to care for him. Don't let them do this when he comes home it will take ages and leave you in limbo.
You don't need to do the majority of the care. They should assess and set up a care package for his needs. This will most likely (if bed bound) include 2 staff members 4-6 times a day (often depends where you live). Often in the areas I've worked in they don't tell you about visits 5 & 6 you have to fight and prove need.
Also request referrals if appropriate to specialist nurses, gp, district nurse, hospise at home team prior to discharge you need the support.
Having carers can be very intrusive in your life but also an absolute life saver. You could also use the pip payments to buy in extra support, or a cleaner, or some one to come and see your husband while he's at home and your at work.
When you get assessed for chc also ask about personal assistants rather than care agency. For someone of your husbands age this may be more appropriate.
Finally seek out support emotionally for you and your family and don't feel guilty for keeping a roof over your family's head.

Ask if he is eligible for continuing care. Many patients depending on their condition are eligible for 4 visits from carers per day. You could even think about paying for carers whilst you are at work. It’s expensive but may be better than giving up work. Or try part time work it would be a shame to give up work altogether.
The carers would come in the morning to change clothes/give breakfast then at lunch for toileting and give lunch, then afternoon for toileting/supper then later evening for bed time. You get get him an alarm he could have around his neck that he can press if he needs help that will alert you and other people of your choice. A key safe can go outside so carers can get in without him having to answer the door.

Does his life insurance cover critical illnesses OP? Does his workplace have a critical illness scheme and/or an income protection policy? Maybe a few things to check out?

Sorry you are going through this
You don't mention the illness but if it is cancer another recommendation here to call the main Macmillan number . They have financial guides, workplace advisors and benefits help. They are good , I used to volunteer there . It isn't just for the cancer patient to call but anyone affected.
If it isn't cancer there may be similar help from a charity related to his illness
Power of attorney would be vital now in case he deteriorates you might be left not being able to access joint assets . you can do that yourself

No words of wisdom OP but I am so sorry you’re going through this. Such a scary and awful situation without the added stress of having to consider the financial side. I hope you’ve got people supporting you in RL and we are all here giving you a handhold

Meltdown all you need to OP! I think if your husband has been diagnosed with a specific condition, contacting the charity for that condition would be a great first step. Let them talk you through what needs to happen next. For example, they may have experience of the CHC process and know exactly what wording to use to stand a better chance of securing some funding (it is notoriously difficult to get).

Then make clear to hospital you will not have your husband home without support in place (assuming he is not chomping at the bit to get home himself) and let the social care wheels start turning. Assessments are usually fairly quick to do but the support, especially if it’s a large package of care, can sometimes take a while to source.

My mum was recently told by a bank that you can inform them that you have POA in place, and who is named on it, before you need to use it. That way the bank knows who they will be dealing with , so it makes the process easier when it kicks in.

And get the POA for health and finance. It’s two different forms.

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

Do you have any help? Could you delegate phone calls to financial companies to a sibling or relative? Or pay for an IFA, accountant or other professional to sort everything out?

I am not a big fan of Macmillan but I believe a big part of their remit is working through financials and the logistics of a terminal diagnosis, could they or someone similar help?

Or write lists. Do one thing a day. Start by phoning HR at your DH’s work and get them to look into pensions and death benefits.

OP firstly what a terrible time.
Are you able to share your husbands diagnosis/condition as this may help any professionals point you in the right direction.
As previous posters have said he needs a CHNC (continuing healthcare needs checklist) as he may be entitled to some if not fully funded care. He should also have some other professional assessing both him and your home (OT/physio) to ensure it’s safe for him to come to in terms of getting him back in the house e.g. up stairs, around corners etc and that any equipment that is necessary can placed.
With regards to pension contact the company if possible. My BIL was diagnosed with MS a couple of years ago and his pension included some income protection/critical illness payout and it was massively beneficial to him and his family and the company was very helpful in sorting it out. Don’t try and hide money etc it will not end well. They can’t leave you without a certain amount of savings and you live in the home so there’s nothing they can do about that.
Contact you local Citizens advice re: finances/pensions they are incredibly helpful. Also depending on the condition if they have an affiliated charity/support group they can often be helpful. There are also some specialist financial advisors out there who deal with this and may be worth a look.
Dependant on the condition there is also some special paperwork than can be completed that excludes you from Having to go through PIP assessments.
It’s not going to be easy but also really talk to your husband/family (do you have children or siblings?) about wants and expectations although a hard conversation it’s only to have once and it’s often easier to plan and also change plans moving forward as thing progress.
Contact your GP on discharge too they get a bad rep but there are actually some fabulous ones out there and if they are in the loop they can help more and there is also a district nursing and specialist nurse team attached to them who can be a great resource.
It’s ok to feel like having a meltdown too your plan for your retirement with your husband has changed rapidly it is ok to grieve that

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

Definitely do not give up work as you’ll need it for your sanity and also to keep you afloat once your husband passes on. Also don’t rely on what the council and hospital say you’re entitled to as you will need to do the research yourself or get someone else to help

You need to be open and honest with the hospital staff about your plans, they’ll then do an assessment to see if he would be safe at home with a carer visiting for personals cares approx 4 times daily or if they, and you, thought this was not sufficient it would be looking at 24hr residential care, or a live in carer, which you would need to fund.

Could work give you a period of unpaid leave? I know that would stop income now but would secure your job for when he passes away? Other options, does he have critical illness cover? That’s usually payable at this point. And yes it is too late to move money unfortunately.

I am really sorry to hear about your situation. On the financial side of things it is worth checking with his employer or pension company what the benefits are due to both of you following his diagnosis and after he dies. There are often ill health clauses and I would expect that after his death pension payments to you would begin immediately.

No advice but lots of sympathy. It must be so difficult for you and your husband and your family. I hope you get something sorted out. Good luck. 💐💐

Oh OP don't have a melt down. You can do this. In my trust we have discharge co ordinators who oversee the complex cases and your DH will have one handling his care. Telephone the ward and they will give contact details. Explain your situation and that you feel you have no understanding of your DH needs. They will explain what care package they are putting in place, what other services will be out to see him if needed (community nurse/physio/OT). They will explain exactly how the costing works. As your DH has progressed as far as possible it seems they are only considering home for him with care otherwise it would be placement (NH).

Again my ward does allow occasional visits when discharges are complex particularly if you are needing to provide care. Some patients are perfectly able to be left alone between care visits meaning you could possibly work still. Lots of questions to ask. Have occupational therapy done a home access visit I assume they must have if DH is bed bound as he will likely need a hospital bed. Will he remain in bed all the time? Does he have a catheter? Can he feed himself? Is he able to self medicate? Does he have any other conditions that require monitoring? Such as diabetes?

Have you had any equipment delivered? How will he be accommodated in your house?
You can't accept him home unless you understand everything. The discharge co ordinator can give you info about carer's support UK they are brilliant at helping you with finances and accessing all you are entitled to. I am so sorry you are going through this, it sounds awfully stressful.

I am so sorry you are facing this situation.

Dome things to consider;
Does he have critical illness insurance through work or privately?
Life insurance?
Are you named as the beneficiary on his pension?
Has he made his will?
Is there anything in your mortgage that pays off his share in the event of death? (I had such a policy that came as a matter of course with one of my mortgages).

Amidst the emotional and practical turmoil, your security is important so don’t feel bad about thinking about it.

@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

Thank you for the

Carers allowance is £67 pw and the person you're caring for must be on benefits.

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.

My mum was in your situation
She brought him home to care for him herself as ,they would of had to pay for his care ,and they didn’t want to loose their money .
She couldn’t roll him ,to change him ,or even push his wheelchair,it was horrifying.eventually after a year or so ,he went in to a nursing home and half of everything they had went on his care.
It’s kind of the point of saving money ,so you can pay for your care .
So any money your dh uses for his care ,is his money ,so he can get the best care available..they won’t touch your half of the money

So dh comes home ,with a full package of care ,using his share of the money saved
You carry on working .
Can’t see the problem?

You will have to be very firm. They always try to discharge at the cheapest possible cost. They tried to send my Dad home to be cared for by my mother who had terminal cancer. She didn't know how to say no but I did.

I said he wasn't coming home without a proper care package in place and we wold no collect him until they were sure. They said they'd send him home in an ambulance and I said I had the keys and would not let them in.

They were very angry and very aggressive but I stood firm.

They arranged a month's convalescence in a specialist facility and carers 4 times a day when he did come home.

Dig your heels in, OP.

To get continuing health care in our area, you have to be literally on your death bed. My husband didn't qualify for it even though he was bed-bound and incontinent, we applied four times, turned down every time. We got it for the last three weeks of his life. It sounds like something possible, but I can assure you that CC spent their whole time working out how not to give you the money, not how to give it to you.

You need a social worker, but will be expected to do lots of care or to fund your own care unless you have no or a small amount of savings. Also, even if they fund care, it will be 3-4 visits a day for a short while, not 24/7 care. Not more than one or two nights, and that's if you are lucky. It may be easier for both of you if he went into a care home, I don't say that lightly, but then at least there is wrap around care and then you can still work and visit, but obviously with covid, seeing the person is harder.

I wish it were easier, the last year of my husband's life was made a complete misery by trying to sort out decent high quality care, it was incredibly stressful working as well and it nearly broke me. If you have money, throw money at the problem, I'm sorry but you won't be able to save your saving for your own retirement, it will have to be spend now if you are to have any type of quality of support/care package and to not end up doing huge amounts of care yourself.

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.

OP, you poor soul.
Tell hospital that you cannot care for him at home.

Phone DH’a HR department. Explain. Ask them to research & get back to you with everything he could be entitled to via company pension / life insurance / etc.

Phone your boss. Explain you want & need to keep working. Ask if there’s anything they can do to help - eg part time role, or (worst case) period of unpaid leave (I say worst case because doing some days at work would be emotionally easier?).