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.

but would take back any money owed when it is sold?

Not if you are married.

What sums are we taking in savings? Ball park (in dole DH name + 50% of joint). That'll help me work out your risk of having to go through deprivation of assets process.

OP I’m a palliative care specialist nurse.
Can I ask who gave you the information regarding his prognosis and how recently that was?

And can I just appeal to those clamouring for legal routes, private nurse consultants etc to just STOP.

I've not read through the thread sorry but I would try continuing health care, its funded by the nhs and we was successful for my mom 4 years ago, pays for carers/ private physio/ppe etc ( mom was nursed in bed, peg fed, none responsive) this enabled my dad to carry on working as was only 54 when my mom was taken ill. My parents house wasnt taken into consideration as if anything happened to my mom or needs to go to a nursing/residential home my dad would still need a home to live in.

Continuing health care funding from the health service does not look at your or his income or savings - it is based solely on clinical need. Your financial circumstances are irrelevant. Please see beacon, as above.

If you finish up having to go down the route of help from social services funding for his care, they do take HIS income and HIS savings into account (or half of joint savings) but they are banned from asking you about your earnings or savings, none of which are taken into account. If you are living in the house, then the value of that is completely ignored. If you were to sell the house during your OH's lifetime, then (assuming it is in joint names) then half of the profit would be regarded as his savings and would be taken into account when assessing his contribution to his care. Best stay put I think!

You should not have to maintain your savings in order to pay for care, but any reduction in savings should be reasonable to your needs and not for the intention of reducing or avoiding care costs.
So if you have a second hand car which is on its last legs or is unreliable or needs significant repairs then it would be perfectly reasonable for you to sell/part ex for something newer, more reliable, possibly easier for you to drive, get a wheelchair in the boot etc but a sporty convertible would raise a few eyebrows.
Also if you needed to install adaptations to your home or buy any equipment to directly benefit your dh it would be reasonable reductions in savings.
So for any big ticket items keep any documents such as a MOT or garage report on the old car etc and obviously all invoices or bills and bank statements showing payments.
The guidance may have changed but when I last looked the house was disregarded if there was a spouse living there, plus an element of household costs like rent and mortgage were deducted from income especially if you are a lower earner in the relationship. However you should probably check that the regulations haven’t changed.

I'm so very sorry that you and your DH are facing this. Cancer is an utter bastard.

I'm really sorry to ask this but who gave the 18-24 month prognosis? I am fearful for you both that that is optimistic. So sorry, I only say because it may impact on your thoughts about asking work for a 6/9/12 month sabbatical and see what they say.

Hi op As he has cancer get in touch with Macmillan they will point in the direction of your local workers who can advise re care, finances and practicalities. www.macmillan.org.uk/cancer-information-and-support

You should change the deeds of the house so you each own 50% of the house rather than each wholly owning the house. That means you've always got your half and the whole value of the house can't be used for his care. That's not hiding away funds that's just making sure you have your own fair share and somewhere to live.

@TubeOSmarties

I'm so very sorry that you and your DH are facing this. Cancer is an utter bastard.

I'm really sorry to ask this but who gave the 18-24 month prognosis? I am fearful for you both that that is optimistic. So sorry, I only say because it may impact on your thoughts about asking work for a 6/9/12 month sabbatical and see what they say.

I know. I can't see how he will even have the will to live stuck in a bed, in his own filth, in our living room.

I've just had another call from OT about sending a bed home. As suggested, 2 carers, 4 times a day and other than that he's on his own. I won't be able to clean him on my own (so she said), so he has to wait until they're due. How can that be OK?

@Doublefaced

OP I’m a palliative care specialist nurse. Can I ask who gave you the information regarding his prognosis and how recently that was?

And can I just appeal to those clamouring for legal routes, private nurse consultants etc to just STOP.

It was the (ward?) doctor caring for him in the hospital, about 2 weeks ago. The oncologist won't put a timescale on it because they don't know if treatment will be successful. He's having immunotherapy, but I haven't been able to get anyone to say if success means extending life or unsuccessful treatment means even shorter life expectancy.

It sounds awful but it makes a huge difference. If we're talking a few months, I'll pull out all the stops and do what's needed but I can't do that indefinitely.

ATM I can mostly wfh, but that doesn't help if I can't clean him on my own anyway.

@Toorapid
"
I've just had another call from OT about sending a bed home. As suggested, 2 carers, 4 times a day and other than that he's on his own. I won't be able to clean him on my own (so she said), so he has to wait until they're due. How can that be OK?"

Unfortunately 2 carers 4 times daily is the maximum that would be provided, but if you are self-funding, then you can be more flexible about how often carers visit.
It sounds like he can't roll himself. If he can, it is possible for just one to change a continence pad. It may be something he could learn to do once his pain meds are sorted out and he's more comfortable.

Only having continence pads changed four times a day is something a lot of people are shocked about, but that's standard. For more regular care, a residential placement or live-in carer is needed

It's an awful situation. It's exactly what happened to my mum, but she was a lot older. She went into a nursing home, and actually did agree it was better having someone there all the time. Of course, I was able to visit every day, but now there's covid.

It's not really ok is it

However, unless loss of bowel control is already a symptom or predicted to become a symptom much before the very end then I guess it will be important to try to get into a routine of breakfast and toileting with the carers there.

Sadly, I imagine there are adults already in this sad situation and are told that's the way it is.

[quote buttheywereonlysatellites]@Toorapid
"
I've just had another call from OT about sending a bed home. As suggested, 2 carers, 4 times a day and other than that he's on his own. I won't be able to clean him on my own (so she said), so he has to wait until they're due. How can that be OK?"

Unfortunately 2 carers 4 times daily is the maximum that would be provided, but if you are self-funding, then you can be more flexible about how often carers visit.
It sounds like he can't roll himself. If he can, it is possible for just one to change a continence pad. It may be something he could learn to do once his pain meds are sorted out and he's more comfortable.

Only having continence pads changed four times a day is something a lot of people are shocked about, but that's standard. For more regular care, a residential placement or live-in carer is needed [/quote]
Taking advice from here about being "firm",I have tried to argue that he's not fit to come home until his pain is sorted. He called me this afternoon but had to hang up becuse he couldn't speak for the pain. I really need to sit in a room with him and his doctors to get this sorted out

I don't want to delay his return home by being difficult, but it feels like once he's home no one will care how much pain he's in.

Also what @TubeOSmarties has said. If your DH is continent, then hopefully you can establish a routine and build the care package around that.

Cancer prognoses are notoriously wrong in both directions (much shorter and much longer than predicted). So it is going to be very hard for you to plan. The nature of the beast is you will be living day by day.

Can you ask work for a month off to start with and take it from there?

@buttheywereonlysatellites

Also what *@TubeOSmarties* has said. If your DH is continent, then hopefully you can establish a routine and build the care package around that.

Thank you that is reassuring. Personally, when I need to go, I need to go, but DH has always been a creature of habit

@Toorapid I think you are absolutely right about them establishing the right pain management routine whilst on the ward. That is where the Macmillan nurse will support and where the palliative care team come into their own once he's back at home.

4x carers during the day but what about nights? I would generally say the last care call would be around 8pm during the day you would know someone would be visiting in a couple of hours time but at night, no one would be coming until 7am ish. If you are self funding, would you could consider a night sitter. I doubt social services would fund a night sitter. I think chc funding needs to be considered by the ward

He may qualify for attendance allowance and as he has had a terminal diagnosis I understand that it can be fast tracked. Also see maybe a pension advisor as he may be able to take his pensions now as full lump sums and drawdown a certain amount each year below the tax allowance. What is left when he passes could go to you. Is he over 55?

Ok.
First thing you need to do now is speak to the oncologist. Do not take no for an answer until you get contact from them either face to face, by phone, or by email.
If he has been referred to the hospital palliative care team, go through then to get access to oncology.

Make a list of questions that you need to be answered-those you’ve asked above regarding the rational for treatment and what it’s aim is. Ask regarding prognosis. Bone mets are an indicator of a much more limited prognosis.

Ask the palliative care team if he has had a DS1500 completed.

With regards practical continence issues, has a catheter been considered/discussed? There are risks re. infection so it’s not a straightforward decision. Especially if he is immunocompromised.
With regards bowel management, he is incontinent? If yes, then continence pads and products are designed to be absorbant and to protect skin integrity to an extent but obviously not ideal at home.
If he is continent, then he needs to have a hoist and commode or bedpans provided and to suggest anything else is so beyond unacceptable.
Bowel management at home can sometimes work for continent patients. It’s so individualised. Some people already have a regular routine/habit and in the best case scenario, the carer visits can coincide with him being hoisted out to the loo.
With serious illness though, bowel patterns can become problematic and in some cases, people can have suppositories every couple of days which stimulate bowels well and again, can coincide with carer visits.

I think the priority though is for you to get some updated information on his prognosis. If you have an inpatient hospice locally, it’s worth asking about the services there. If you want to pm me with a rough location, I’ll try and point you towards local hospice services to you.

Attendance allowance is not means tested and you don't have to be in receipt of any other benefits. If he were to go into a home your house would not be taken into consideration when looking at his assets.

Sorry you are having all this stress, OP.

I'm pretty sure the attendance allowance is for older people, I don't think my husband qualified (the Op says she and her husband are early/mid fifties).

I completely agree with getting the hospice/palliative team involved early on, they do know a lot about pain management and also they came up with better sickness drugs than the GP. In our case, the GP was always the prescriber though, and so it's quite a complicated process getting everyone to agree on the right way forward.