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Original poster

lf DH is discharged from hospital needing significant care will I be expected to leave work?

412 replies

Toorapid · 02/02/2021 07:57

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.

OP posts:
RB68 · 03/02/2021 20:39

Ok something else I don't think has come out yet but my Mums care both pre and post palliative was co-ordinated by a District Nurse - they had responsibility for owning the patient and bringing in other people professionally - we generally suggested it and she would jump and sort. We didn't find this out till late on and had to be quite forceful in getting their attention intitially. We did it via the GP surgery - the problem you have here is connecting hospital, community and gp led services. Even the mcmillan night sitters came to us via district nurses.

SoUmmYeah · 03/02/2021 20:42

RB68

That's one of those things that is area dependent.

Unless you're talking about CHC funding where yes the district nurses are the coordinator there.

Flapjak · 03/02/2021 20:43

From my professional experience with the limited information we have, previously well patient, now bedbound, palliative diagnosis and in uncontrolled pain, i would be recommending a hospice bed for symptom control . If no beds are available which may well be the case depending on the country. Is he on maximum doses for pain meds? Look on macmillan websites about treatment for pain management. Is he bed bound due to pain? Or has he lost use of his legs due to cancer? It would be unusual to have this level of functional loss but have a prognosis of two years. Its not really adding up, what you are being told / not told . If he is only in bed due to pain, if they get that under control then you mjght not need so much care support in the longer term. Is it possible he has any fractures that havent been picked up ? Bone mets can result in more easily fractured bone?

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Original poster
Toorapid · 03/02/2021 20:44

I don't know that I can take anything DH says as accurate now. He's just told me he's going to phone DS2 when he finishes his piano lesson with Grandad. Grandad has never played a piano in his life, DS2 hasn't has lessons in about 8 years and we don't own a piano. Sad

OP posts:
buttheywereonlysatellites · 03/02/2021 20:44

@wendyleen

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.

It's not the case at all that a palliative client would be low priority for community therapy. In all of the areas I've worked in palliative is absolutely a priority. I would find it perverse that someone at end of life would not be prioritised. However, that doesn't mean they would be seen immediately, unless they are at high risk of being readmitted. Not all areas have therapists in the palliative care teams, so I really hope there are in the OPs area.
buttheywereonlysatellites · 03/02/2021 20:47

@RB68

Ok something else I don't think has come out yet but my Mums care both pre and post palliative was co-ordinated by a District Nurse - they had responsibility for owning the patient and bringing in other people professionally - we generally suggested it and she would jump and sort. We didn't find this out till late on and had to be quite forceful in getting their attention intitially. We did it via the GP surgery - the problem you have here is connecting hospital, community and gp led services. Even the mcmillan night sitters came to us via district nurses.
That would be area specific. Where I am, it would be a community matron not a DN. However if the OPs DH was in my area, it would be the palliative care team doing the coordination.
Original poster
Toorapid · 03/02/2021 20:48

He does have a small fracture in his spine (doctor told me that) but they don't think it's what's causing his pain. At least some of the pain is cause by a prolapsed (?) disk which they don't seem to think is related to the cancer, although that seems unlikely to me with the level of pain.

They can't/won't operate on the fracture because he's had blood clots and they don't want to stop the medication for those, which they would have to do to operate.

OP posts:
Jobsharenightmare · 03/02/2021 20:49

In my area it would be the GP unless there were complex palliative care needs.

MissLucyEyelesbarrow · 03/02/2021 20:55

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

There's a huge difference between a discharge home with 4 care calls a day for someone who already has facilities set up at home (commode/bedpans, grab rails/ropes etc) vs someone like the OP's DH who has nothing in place as yet. And his pain is not controlled, even in hospital.

I think some of the OTs on this thread are quite idealistic. By definition, the home care situations you deal with are ones where there has been OT involvement - and usually physio/SS too. You don't see the ones that are a complete fucking disaster because the patient has been discharged too soon or has deteriorated at home without OT and other support services. Home-based end of life care can be amazing, even for complex patients, but it can go very wrong.

OP, has he been seen by the pain team? Macmillan nurses are fab at pain management, but, if his pain is still not under control, he needs to be seen by an anaesthetist with a special interest in pain.

SignsofSpring · 03/02/2021 20:57

It sounds like the high dose morphine might be causing him to lose touch with reality a bit, unless there's another reason (UTI, progress into brain). It is worth mentioning this to the consultant on their rounds. Very upsetting for you and it can be for the patient as well as they can feel a bit disoriented/things don't make sense. I didn't use to spend a lot of time arguing with my husband as I realised he didn't 'get' the thing I was trying to tell him, so if it was factual stuff I'd just say 'oh really' and if it was more emotional stuff I'd try to listen to the emotion (e.g. fear) and respond to that, rather than argue whether stuff was actually real. It is very tempting though to get cross and say 'you know that Grandad doesn't play the piano'!

Updatemate · 03/02/2021 20:59

In my area it would be the GP unless there were complex palliative care needs.

And in mine it's adult social care unless end of life.

Just shows how differently areas work.

Original poster
Toorapid · 03/02/2021 21:04

It sounds like the ward are concerned about a UTI because he was asked to give a urine sample while we were on the phone as "he's not himself today".

He seems to have gone downhill in himself in the last couple of days, since they started talking about him coming home actually. For the first three weeks, whilst obviously, it's a horrible situation, we were able to have really quite nice chats and he seemed happy and comfortable, enjoying the antics of the other patients and banter with the nurses. We even put the phone on speaker and put him on the dining table, on occasion, so he could join the chat over dinner. No way we could have done that today.

He did call DS2, but fell asleep mid conversation, according to DS. Sad

OP posts:
SoUmmYeah · 03/02/2021 21:04

In my area it would be the GP unless there were complex palliative care needs.

And in mine it's adult social care unless end of life.

Just shows how differently areas work.

Yes, in my area it's adult social services as well but we have the added difficulty that we are a border area and some people have GPs in one local authority and live in another. This means they're entitled to one thing for social care and a very different different thing for health care and the two never mix well.

It really is a post code lottery. So unfair.

Jobsharenightmare · 03/02/2021 21:11

I'm so sorry OP.

To the PP yes it is a postcode lottery as you say.

supercatlady · 03/02/2021 21:12

You don’t have to care for him and are entitled to a carers assessment.

However, unless he’s entitled to Continuing Healthcare funding, you are likely to need to pay the full cost of any care.

You should be able to claim PIP for him if you aren’t already.

buttheywereonlysatellites · 03/02/2021 21:13

@MissLucyEyelesbarrow

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

There's a huge difference between a discharge home with 4 care calls a day for someone who already has facilities set up at home (commode/bedpans, grab rails/ropes etc) vs someone like the OP's DH who has nothing in place as yet. And his pain is not controlled, even in hospital.

I think some of the OTs on this thread are quite idealistic. By definition, the home care situations you deal with are ones where there has been OT involvement - and usually physio/SS too. You don't see the ones that are a complete fucking disaster because the patient has been discharged too soon or has deteriorated at home without OT and other support services. Home-based end of life care can be amazing, even for complex patients, but it can go very wrong.

OP, has he been seen by the pain team? Macmillan nurses are fab at pain management, but, if his pain is still not under control, he needs to be seen by an anaesthetist with a special interest in pain.

But the OP has literally said that the OT is arranging a hospital bed, and has assessed him as not being safe to transfer? So this I think we can safely assume that there is OT input and that the OT is arranging equipment Confused
buttheywereonlysatellites · 03/02/2021 21:16

@Toorapid the combination of a high dose of morphine and a possible UTI can definitely cause the confusion you're seeing! Hopefully the medics will be treating it and monitoring how he responds Thanks

BBCONEANDTWO · 03/02/2021 21:22

@Toorapid

I suppose it's too late to start moving savings into my name? Something I would frown upon really, but desperate times...
Why would you not be able to do that? I think that would be totally sensible.
PinkFondantFancy · 03/02/2021 21:24

Ah OP I'm so sorry. The conversation sounds like my dad when he was on high dose morphine.

Original poster
Toorapid · 03/02/2021 21:25

I think I've moved on from the money, come round to the view that it's actually in his best interests to be paying for the care. Plus my Dad has told me not to worry about it Smile

OP posts:
Doublefaced · 03/02/2021 21:26

Op Another question to ask the Macmillan nurse and oncologist is regarding a condition called spinal cord compression, if that has been considered and ruled out.

SendMeHome · 03/02/2021 21:26

@BBCONEANDTWO It’s not that she can’t, it’s that the money she moves will still be assessed as being part of “his” available funds for care. Its not a way of avoiding care costs, essentially.

@Toorapid, I’m so sorry. I hope they manage to sort his confusion - I’m 30 but had some big spinal surgeries when I was younger, and although I did fine (big tolerance for morphine, apparently!) I was warned that confusion was a common symptom. I hope it’s something easy like that.

All the best to you, this much be awful on every level Flowers

Jobsharenightmare · 03/02/2021 21:27

It definitely is. Money = choice more often than not when it comes to care options.

I'm just sorry you're all going through this.

daisypond · 03/02/2021 21:27

Why would you not be able to do that? I think that would be totally sensible.

Because they will check and you will have to pay anyway. It’s deprivation of assets.

BBCONEANDTWO · 03/02/2021 21:35

@daisypond

Why would you not be able to do that? I think that would be totally sensible.

Because they will check and you will have to pay anyway. It’s deprivation of assets.

Oh I didn't realise that this is awful.
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