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.

You need to ask for all the help possible (obviously, sorry)

Magic words are 'unsafe discharge' - if a discharged patient returns within 24 hours, there are repercussions for the hospital.

He needs rehab, carers, OTs and physiotherapists for a start.

Ask for the Discharge Coordinator Team and tell them you and your house are not equipped for his complex needs.

@Doublefaced

Is she definitely a Macmillan nurse? Has she physically seen him?

Defintely contact the hospice directly and ask for their advice. Because he’s not officially referred to them, they will be limited in what they can offer but I ‘m really confused as to why a patient who is unable to be moved/hoisted because of uncontrolled pain, who is in a general clinical setting with non specialist AHPs, metastatic disease is deemed NOT suitable for a hospice inpatient setting.
Hospices don’t offer ‘long term’ care so once his symptoms are stabilised and controlled, then they will also look at discharge planning. There may be limited availability for beds at present.
If he DOES come home first, he can then be referred to the hospice by your GP.
Who may also be worth contacting now. Does your GP know your husband well? He may have access to relevant clinical info regarding prognosis?

Yes, she sees him almost every day. I've spoken to her twice, she introduced herself as a McMillian nurse.

GP doesn't know DH well, he's barely had a day's illness until recently and his first cancer was "straightforward". This currently situation has only been known for about 6 weeks, but GP is very helpful. I was thinking I might ring him tomorrow and see if he can get a proper picture of what's going on for me.

@Gingernaut

You need to ask for all the help possible (obviously, sorry)

Magic words are 'unsafe discharge' - if a discharged patient returns within 24 hours, there are repercussions for the hospital.

He needs rehab, carers, OTs and physiotherapists for a start.

Ask for the Discharge Coordinator Team and tell them you and your house are not equipped for his complex needs.

Yes, I did say I didn't think it would be safe to send him home and OT got quite stroppy with me, although TBF, I was stroppy/upset too.

Is that what unsafe discharge means?

I also asked about ongoing physio and she said he'd be referred to the community team, but she couldn't say when that would be, there's a waiting list etc.

@Toorapid

No, he's not on an oncology ward, he's not even in the same hospital as his oncologist, who's never met him.

A McMillian team seem to be in charge of his pain relief.

The OT lead me to believe this afternoon that they'd discussed plans for his discharge and he wanted to come home on this basis. I don't know what he said to her, obviously, but it is definitely not what he's saying to me.

I'm so sorry you are in this awful situation . Do you think that your H might just be wanting to get home and is saying that you will be able to do everything ? I would also encourage you to stand your ground . I was in a similar situation with my mother who had a devastating brain injury and who was "too young " for certain facilities and " too old" for others . Good luck . Sending you strength.

@Toorapid

Your gp will struggle to give you specifics because the discharge plan will be formulated by the hospital. Your gp may not even be aware yet

Have you given you an idea of when they think discharge will be? When someone is in hospital immediately discharge starts to be planned, and obviously that slowly evolves with specifics. If he hasn't been referred for social care yet then I would assume they are still in the early planning stages rather than the stage where concrete plans are made

I haven't RTFT so I'm sorry if it's repeating. First of all I'm so sorry to hear you're going through this.

Couple of thoughts? If he's got life insurance it might have critical illness cover which might pay out in these circumstances?

Also, does he have any DB pensions? If so they might have serious ill health benefits, worth checking.

[quote Whalespeak]@Toorapid

Your gp will struggle to give you specifics because the discharge plan will be formulated by the hospital. Your gp may not even be aware yet

Have you given you an idea of when they think discharge will be? When someone is in hospital immediately discharge starts to be planned, and obviously that slowly evolves with specifics. If he hasn't been referred for social care yet then I would assume they are still in the early planning stages rather than the stage where concrete plans are made[/quote]
Yes, I think that's the conclusion I'm coming to. OT wanted to arrange delivery of a bed, but they're probably not as close as she made it sound.

Mind you, yesterday she was asking me if I could set up a bed downstairs because "there's a strict criteria for hospital beds" at the same time as telling me he can't submit stand. I think she thought she was ringing with good news - that he has been granted the use of a hospital bed.

*sit or stand

‘This currently situation has only been known for about 6 weeks, but GP is very helpful. I was thinking I might ring him tomorrow and see if he can get a proper picture of what's going on for me.’

Definitely do that. Even if DH does end up coming home, your GP will be primarily responsible and it is good to keep him in the loop from this early stage.

@Doublefaced

Oh and it’s very clear that the OT has very limited experience in palliative care.

Well she / he is an OT on a medical ward so they are unlikely to be palliative care specialists. But that doesn't mean they are unable to facilitate a safe discharge. @Toorapid the Macmillan nurse may well be hopeful that your DH will be able to sit out. But it's the OT's job to assess his ability to do that now. And if he can't do it now, he needs to be set up to remain in bed at home until he can do it safely. He's on a medical ward at the moment. Unfortunately he's going to be at risk of hospital acquired infection the longer he stays there. A discharge home where he's comfortable in bed with four care calls a day would not be an unsafe discharge. Rehab teams do have waiting lists. But that is the same everywhere. The Macmillan nurse will be the one who can explain why hospice care is not appropriate for him right now. Your husband has capacity to make his own decisions. So the team are working to his wishes. The discussions should absolutely include the OP. But the OP and her husband need an honest discussion with each other about what discharge home will look like.

Safety is one aspect.
Dignity and respect are others.
Forcing someone to defecate into incontinence pads because their pain isn’t controlled in the palliative phase of their illness is inhumane.

(My last post sounded a bit harsh @Toorapid, I apologise as it wasn't supposed to. I'm just fed up with posters claiming legal help is required and citing unsafe discharges etc)

I've just read the whole thread. Well done so far, you've had some brilliant advice from the posters on here.

I just wanted to say that I became a carer (by stealth) in similar circumstances. It was only when we were in the thick of things, and such awful things, that I realised that the selfless decisions I'd made for other people had impacted so devastatingly on my own life.
I cried selfish tears that day. Not for the looming loss of much loved family members, but for the loss of my own future: health, freedom, career.
You must not feel guilty. You are doing all the right things.

@Doublefaced this is a quote from the OP earlier;

"He has secondary kidney cancer, which has gone to his bones. He's been in hospital for almost 4 weeks while they try and get his pain managed and whilst he is more comfortable, while still and flat he still can't stand, or even sit without excruciating pain. He's ex army, very much a take an asprin and get on with it type, it's awful to see (hear) him in so much pain and he's on so much morphine it's really hard to have a conversation with him about what he thinks."

Are you saying they aren't trying? It sounds like that's the whole point of the DH being an inpatient.
Have you ever been hoisted? It's not the nicest experience.
What do you suggest?

[quote buttheywereonlysatellites]@Doublefaced this is a quote from the OP earlier;

"He has secondary kidney cancer, which has gone to his bones. He's been in hospital for almost 4 weeks while they try and get his pain managed and whilst he is more comfortable, while still and flat he still can't stand, or even sit without excruciating pain. He's ex army, very much a take an asprin and get on with it type, it's awful to see (hear) him in so much pain and he's on so much morphine it's really hard to have a conversation with him about what he thinks."

Are you saying they aren't trying? It sounds like that's the whole point of the DH being an inpatient.
Have you ever been hoisted? It's not the nicest experience.
What do you suggest? [/quote]
That he is moved to an oncology unit or palliative care unit with specialist palliative care staff as a start.
There are a number of specific drugs specific for pre care/incident pain which are desperately under used.

It feels like there's no time to organise anything. Does the hospital organise carers, regardless of who's paying and if I wanted to change, I'd do that later?

Yes.

So the hospital are concerned about whether he needs to be in hospital. They aren't really concerned beyond that. HOWEVER they cannot do an "unsafe discharge" so they work with social services to get a support package for discharge. This is usually 6 weeks, which allows time for another plan to be formulated. This other plan is entirely up to you.

OP this is such a hard and stressful situation and I don't think your OT sounds great, to be honest, making out it's a big deal to get a bed- it's not just any old bed he needs, he may even need a pressure mattress and so on if he's bedbound, not improving, can't do anything for himself and may have over a year or more to live.

I don't know whether your funding is coming from CHC or social services/council (social care) or a mixture of both (my husband had both agreed between them as a package). I'm pretty sure you do need a social worker if some of the care is social care, can you ring the adult social services and ask when an assessment would be appropriate. They tend to be pretty knowledgable about the system, but also have strict budgets and constraints on what is on offer. Have you even been able to talk with your husband about nursing home/care home options? I know it's incredibly difficult but honestly, a long spell at home if he's bed-bound with uncontrolled pain doesn't sound great, to be honest.

I agree if you can talk with the consultant, and your husband together about his prognosis it might be a good idea. Does he even want palliative chemo, what are the pros and cons? Are they really thinking 18-24 months?

I feel awful that I'm saying these things to you, the hardest part I found was that the system is very fragmented and no-one person is really in charge, you end up bounced between the hospital, GP and district nurse care, palliative advice in the community , OTs and social workers, let alone people doing the care/managing the care side. It's very stressful trying to find answers, but I think the more realistic you are about his prognosis and what care he could need at home, the better, as it will help you think through what you could cope with and what might help him.

You need to ask if he is expected to improve - at least for a while - from his current bed-bound, in great pain, state. If they get his pain under control and some sort of treatment working, will he be able to get up, go out, have some form of normality until the terminal phase begins? They cannot let him be in this state for two years. Surely.

OP can you give us an idea of the area you are based as areas all operate differently depending on what is available from the CCG/NHS/community services/LA

Then there may be a HCP or advisor from your rough area who could perhaps offer more targeted advice.

Op, I'm really sorry you are going through this. What a horrible time for you.

I'm sorry, I haven't read the whole thread. If you are struggling with the OT then there should a palliative OT team who might be a better bet. See if you can make contact with the Team Lead for the OT department.

In terms of the bed, that can be organised and delivered pretty quickly (next day or 48 hours is the norm) but it can be within a few hours. He will need a care package in place otherwise you're looking at an unsafe discharge. The maximum you will get is two carers four times a day. Any more than this and you are looking at a care home/hospice.

I'm sorry but if he is palliative then he will low priority for community physio/OT.

I feel awful that I'm saying these things to you, the hardest part I found was that the system is very fragmented and no-one person is really in charge, you end up bounced between the hospital, GP and district nurse care, palliative advice in the community , OTs and social workers, let alone people doing the care/managing the care side.

This is so true.

And it's an issue which persists in authorities where social care has been taken under the umbrella of the NHS trust.

The maximum you will get is two carers four times a day.

We do occasionally put in 5 or even 6 calls if it's the difference between someone remaining at home or going in to 24hour care and they really don't want to.

Having said that, the OP will be self funding so can have as many calls per day as they feel they need. At a cost of course.

@Buttercupcup

OP can you give us an idea of the area you are based as areas all operate differently depending on what is available from the CCG/NHS/community services/LA

We're in Essex