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 an occupational therapist in a hospital and am involved in organising care packages for people leaving hospital and requiring ongoing care. He should have a thorough assessment to ascertain his level of care needs whilst in hospital, what he can/can’t do functionally. OT’s will also consider any equipment that might be essential for discharge, for instance if he is currently bed bound he may need an electric bed. They should also assess his mobility and establish appropriate transfer method to get in/out of bed or chair. There are lots of moving and handling equipment which can be used. Normally, a temporary care package is then put in place (free for up to 6 weeks) after which a social services assessment takes place to consider his ongoing care needs and who will fund it. I’m sorry you’re going through this, please do so for help as you/he are entitled to it.

Please do not let him be discharged without a care plan in place that you are happy with. You're going to have to get really tough with them. Yes to continuous health care I can't imagine how they can turn you down but they will try their best. Referring to duty of care really helped me. I had to fight so hard with the nhs and unfortunately the squeaky wheel gets oiled first.

I really wish you the best.

You need to speak to the nurses in regards to a package if care being put in place. They will either liaise with social work or point you in the tight direction.

@Bluesheep8

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

I don't think this is correct.
So sorry for your situation op

I'm a GP. It's bollocks. GPs have no say whatsoever in care packages, beyond occasionally confirming medical details on request.

I don't understand why people come on these threads and make stuff up. Isn't the OP in a tough enough situation, without telling her crap that is going to waste her time?

• CHC as others have stated very difficult to reach the threshold, usually requires person to have complex medical needs at home, otherwise every frail elderly non mobile person with a Package of care would be probably be entitled. I have know very few people to get this

Have you spoken with an OT or discharge coordinator? If the plan is to discharge home, they will need to be advising on Care and equipment and informing social worker if a financial assessment is needed. Sometimes depending on area hospital social workers will only get involved if you are below the financial threshold. If the plan is to move to step down / rehab bed, then all of this will be done there.

From my experience , if someone can manage toileting themselves whether thats catheter / bottles, and no c cognitive issues it means they can manage on 4 care calls max per day . If he needs hoisting , that will require 2 carers 2-4 times per day, depending on routine . It can be very expensive. It is possible to get yourself certified to be the 2nd carer for hoisting which could save you hundreds per month but not all companies will agree to it.

Would he be able to move a wheelchair or electric wheelchair ? These can be operated by eyes/breath in more complex cases

2 years is quite a long time for a palliative diagnosis and to be already bedbound ? Have the hospital given you any idea whether functionally improve/stay same for most of time/or gradual decline?

You need to speak to the hospital social . They don't expect you to do all his care . He will be entitled to a care package , of probably 4 calls a day . Morning to wash and dress him and food . Lunchtime to check continence and feed him . Late afternoon for similar and late evening for bedtime . They don't usually give overnight care but there may be charities which help . I'm sorry you are in this position 💐

Hospitals are trying to get people home once they are medically fit for discharge. The beds are needed, and remaining in hospital increases the risk of hospital acquired infection which of course includes covid

Yes that's a great theory and a nice piece of the emotional blackmail referred to upthread.

Families are guilt tripped into accepting people when they still need 24 hour care and rehab. There will be wild promises of care packages, dropping in X times a day which translate into a couple of 15 minute slots after the agency has unilaterally decided the patient "doesn't need" the extra help and has failed to communicate that fact to the family.

The threshold for "medically fit" or any rehab care has bugger all to do with the actual state of the patient and depends entirely on the budget available and whether they fit into the top few percent covered by the budget.

Having intervened more than once to stop a vulnerable, ill and elderly relative discharged without support into an empty house and had the hospital tell me "not my responsibility" having put them at risk due to incompetent record keeping, I have very little confidence in the checks and balances around the end to end process.

Get advice about his pensions as you will probably only be entitled to 50% payments after his death (if he takes them before he dies and they are ‘direct benefit’ schemes) .
The moneysaving expert forums have a dedicated pension section, it may well be the most important descision to make as it will affect your retirement.
Dig out his pension paperwork and look at what happens on his death, both before and after starting to draw his pension(s). If you inherit the lot, as a tax free lump sum if he dies before taking any benefits, then it would be wise (if you can afford it) to leave them alone - he can’t be forced into taking his pension and it isn’t counted as savings.

Hospitals are trying to get people home once they are medically fit for discharge. The beds are needed, and remaining in hospital increases the risk of hospital acquired infection which of course includes covid

"Yes that's a great theory and a nice piece of the emotional blackmail referred to upthread"

Drs decide when someone is medically fit for discharge, that doesnt equate to someone bei g able to cope when they get home but it doesnt mean hospital is the best place for them, for a whole host of reasons. Many times families are unable to help due to distance, children, oen health problems, but it is also a fact that far too often families dont want to take time of work for a short period to help and they expect NHS/social care to sort it all out, and get it all for free. Yes the overall managers might be looking at bed day costs for delayed discharges but the discharge in team are usually trying their best to get someone home safely and as quickly as possible

Lots of the advice on this thread doesn't take in to account the Covid Act 2020 which has temporarily superceded other relevant legislation.

Due to the Covid OPs DH is not entitled to a full assessment and is not able to choose his discharge destination. Long term care will be arranged after discharge.

However there is a positive- the NHS or local will find the care on discharge for up to 6 weeks to allow long term plans to be made.

Having said that, the Covid act does not allow for an unsafe discharge so essential equipment and a basic care package will need to be in place before he can be discharged. This will be arranged by the discharge team, usually a social worker and ot.

dear OP, so sorry to hear of the sad situation you both find yourselves in.
i would advise that you use some of husband's money to engage a private nurse specialist who can advise on / apply for continuing healthcare funding.
this is a complex area and unlikely to succeed unless done by a professional who knows how to apply.
look up someone like lynne phair, if she is not available ask for other names to try.
you will have to pay for her expertise, but it is well worth it to have someone who can put your best case forward.
i wish you all the best.

@SoUmmYeah

Lots of the advice on this thread doesn't take in to account the Covid Act 2020 which has temporarily superceded other relevant legislation.

Due to the Covid OPs DH is not entitled to a full assessment and is not able to choose his discharge destination. Long term care will be arranged after discharge.

However there is a positive- the NHS or local will find the care on discharge for up to 6 weeks to allow long term plans to be made.

Having said that, the Covid act does not allow for an unsafe discharge so essential equipment and a basic care package will need to be in place before he can be discharged. This will be arranged by the discharge team, usually a social worker and ot.

It's so important to manage expectations. There's lots of food advice in this thread, alongside some glaringly incorrect info and a few posters who are adamant that the NHS and social care will do everything they can to get out of their responsibilities. I'm a community OT supporting Discharge to Assess. I have no qualms in sending someone back to hospital if I think their discharge has been badly managed or unsafe. But staying in or going back to hospital should be the last resort. Many people (and I'm not talking about the OP) have unrealistic expectations of what can be provided when someone is discharged home. I'm still surprised at how many are shocked that overnight care is not provided. There is limited money and limited resources, sadly, so we have to work with what we've got. Having said that, rehab in the home environment, when I can be done safely, is usually much more effective than in an unfamiliar setting, because the person is where they belong with everything that is familiar and known.

lynnephair.co.uk/services/

i see most of her work is with older adults, but worth contacting. she may be able to suggest other specialists.
you need to pursue continuing healthcare, but you will fail if you try to do it yourself. it needs professional input.

@alexdgr8 the OP is unlikely to be trying to secure CHC funding herself The discharge team can advice along with the community teams involved once her DH has been discharged home. I think paying a private nurse for this should be a last resource.

There's absolutely no need to get a private nurse to do a CHC application. It won't make it anymore likely to get approved, they'll still go through the whole process. Just ask a community nurse to do the checklist and make the referral.

You can say that there needs to be a care package in place before you can have him come home. Despite your job can you cope with it all? My mil told the hospital that she was no way having fil home without a care package and one was sorted quickly.

Would you'd work give you unpaid leave? Mind did for a year when I needed time off. Explain the circumstances. However this would mean you would get no time off and however much you love someone that is unsustainable.

What happens if there is no family, no partner at home?

Refuse discharge till you have care package get social services involved .Sounds like he needs nursing care CHC which should be funded DON't let them fob you off.

Move money you an gift a large amount because you have worked and claimed nothing they give you fuck all unlike if you've never contribute into the system they fund everything (sorry to be so blunt but bad experience of this in our family).

It's important for you to keep working for routine, normality and sadly to build a future in later times .

Personal care is so difficult I've had to do it with my dad but honestly. After a few times you get used to it.
If he's bed bound you can't change and wash him on your own it's a 2 man job to roll them so you can dress and clean them .
You can get hospital bed ( need to raise and lower so you can do personal care) and a hoist to get him in a chair from social services

Please please I can't stress enough DON'T have him home till this is sorted and DON'T be fobbed off with 6 week discharge package then "it will be reviewed " they will leave you in the lurch.

If your not sure REFUSE discharge till you are happy with what's in place .

@rwalker

Refuse discharge till you have care package get social services involved .Sounds like he needs nursing care CHC which should be funded DON't let them fob you off.

Move money you an gift a large amount because you have worked and claimed nothing they give you fuck all unlike if you've never contribute into the system they fund everything (sorry to be so blunt but bad experience of this in our family).

It's important for you to keep working for routine, normality and sadly to build a future in later times .

Personal care is so difficult I've had to do it with my dad but honestly. After a few times you get used to it.
If he's bed bound you can't change and wash him on your own it's a 2 man job to roll them so you can dress and clean them .
You can get hospital bed ( need to raise and lower so you can do personal care) and a hoist to get him in a chair from social services

Please please I can't stress enough DON'T have him home till this is sorted and DON'T be fobbed off with 6 week discharge package then "it will be reviewed " they will leave you in the lurch.

If your not sure REFUSE discharge till you are happy with what's in place .

The OP and her DH will have no choice but to accept a care package with a 6 week review. It doesn't mean they go home with no support. And you have no idea if her DH is entitled to CHC funding as all we don't have any info to come to that conclusion.

What happens if there is no family, no partner at home?

If they can safely be left alone overnight and for 4 hours during the day then a care. Package of home carers would be provided. If they aren't able to be left alone, a placement in a care home would be found.

There's millions of elderly, severely disabled or seriously ill people living alone in their own homes. Most through choice.

And the CHC process takes a while to got through. There's no way he'll remain in hospital whilst that's done. Even in non-covid times.

I think it goes without saying that you should not move or gift money without getting some financial advice because it is likely to be a clear case of deprivation of assets and you will need to pay the cost of care as if you still had the asset

Drs decide when someone is medically fit for discharge, that doesnt equate to someone bei g able to cope when they get home but it doesnt mean hospital is the best place for them, for a whole host of reasons

Again, nice theory but not reliable in practice (unless the definition of medically fit now includes the need for 24 hr nursing care).

What I found fascinating was the way "medically fit" when they thought the patient was being discharged into their adult offspring's home suddenly became "unfit" when it was pointed out for the umpteent time that the patient lived alone in an isolated area. This despite being repeatedly asked to correct their records and the patient (in possession of full mental faculties) telling them they lived alone. Incidentally this wasn't the junior staff screwing up - it was the seniors.

No assessment or care had been arranged or discussed with the family who knew nothing of the plan. The OT who subsequently visited was very clear that the patient needed full time nursing care for a while longer before being discharged but an option was a bed in a convalescent facility. Then someone twigged that their home address was in the neighbouring CCG's area and that CCG wouldn't pay for such care unless the patient was quadriplegic. OT tried to move mountains but "computer sez no" blocked her as well.

I've discovered since then just how commonplace an experience this is so bluntly, I'm not interested in what is "supposed" to happen, just what happens in practice. I've met "coalface" staff who tried to help, others plainly had given up in frustration. The more senior the staff, the less interested they seemed to be in their own failures of processes and basic safety checks.

My first advice to anyone with a vulnerable relative now is "learn the system first and be prepared to fight".

@C8H10N4O2

” Again, nice theory but not reliable in practice (unless the definition of medically fit now includes the need for 24 hr nursing care).”

Medically fit for discharge from an acute hospital has always included people who need 24 hour nursing care. It simply means there is no ongoing acute medical care required in hospital.