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 might be wrong though, because you can get some benefits quickly if you are terminally ill (as in predictably so). I think we ended up getting PIP (after being refused) once he started chemo.

@Doublefaced right now the OP has said that her DH cannot sit out because of pain. So, from that I will assume that he has been assessed as to not be able to tolerate being hoisted and sat on to a commode. If someone has good sitting balance, and can tolerate being hoisted, then there is no reason why the OT would not suggest a hoist and commode. Also remember though that you would need two people to safely hoist so it doesn't solve the issue of what to do between care calls.
I find bed pans are really tricky for a lot of people, particularly those with pain. Urine bottles, OTOH, are very useful.

[quote buttheywereonlysatellites]@Doublefaced right now the OP has said that her DH cannot sit out because of pain. So, from that I will assume that he has been assessed as to not be able to tolerate being hoisted and sat on to a commode. If someone has good sitting balance, and can tolerate being hoisted, then there is no reason why the OT would not suggest a hoist and commode. Also remember though that you would need two people to safely hoist so it doesn't solve the issue of what to do between care calls.
I find bed pans are really tricky for a lot of people, particularly those with pain. Urine bottles, OTOH, are very useful. [/quote]
The issues around poor pain control and reduced functional capacity are so frustrating. Not having pain levels effectively assessed and managed isn’t a good enough reason to keep someone bedbound and induce incontinence. This is where specialist palliative care is so crucial.
OP is he on an oncology ward? Are the OTs/Physios involved palliative specialists?

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.

Op I'm so sorry but I'm kindly going to suggest is going home the right thing for your husband? It sounds like he has quite high and complex needs which sadly will worsen. Being comfortable and good pain management will be the most important thing for him. If the hospice haven't been able to make progress with the pain then there could be terrible scenarios where he is at home in pain on regular basis.

In terms of the proposed care package , what they are offering is what I would expect. However having being in that situation .... Even with carers 4 times a day, 2 district nurse visits, gp visit every 2 days, and a Marie curie night sitter, I still had to dedicate almost full time to caring.

Unfortunately if your husband was to go home I think you would probably need to either take a career break, drastically reduce your hours or else pay for additional care.

It won't be a case of waving bye see you tonight after work. It really won't be.
I'm so so sorry . This is a horrendous situation I know. If it's a case that you must work then perhaps paying for a care home might be a possibility to think about.

@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.

Toorapid this is not ok. It really isn’t. Have you spoken to the Macmillan nurse? If not, contact her via the hospital switchboard in the morning. Are you within catchment of a hospice inpatient unit?

@Twistered

Op I'm so sorry but I'm kindly going to suggest is going home the right thing for your husband? It sounds like he has quite high and complex needs which sadly will worsen. Being comfortable and good pain management will be the most important thing for him. If the hospice haven't been able to make progress with the pain then there could be terrible scenarios where he is at home in pain on regular basis.

In terms of the proposed care package , what they are offering is what I would expect. However having being in that situation .... Even with carers 4 times a day, 2 district nurse visits, gp visit every 2 days, and a Marie curie night sitter, I still had to dedicate almost full time to caring.

Unfortunately if your husband was to go home I think you would probably need to either take a career break, drastically reduce your hours or else pay for additional care.

It won't be a case of waving bye see you tonight after work. It really won't be.
I'm so so sorry . This is a horrendous situation I know. If it's a case that you must work then perhaps paying for a care home might be a possibility to think about.

I need to work or I have no future afterwards.

I will push harder re the prognosis. I know it's not an exact science, but it makes such a difference to know if we're talking about months or years.

Presumably we could have him home and see how we go and move to a care home if we can't cope? My parents, in their late 70s, are threatening to move in

Yes, I've spoken to the McMillian nurse a couple of times, she's been by far the most helpful but she only knows about his pain, not about out his condition. I last spoke to her yesterday, when she said she was still hopeful of getting him to transfer from bed to chair/commode, but that's completely different to what the OT said today.

I really really feel for you. I do x

Yes, we have a Hospice very close. I've been involved in lots of fundraising for them. McMillan nurse said he's not suitable for them, even for symptom management though.

You need carers. Nothing wrong with this. You are better off looking for private ones as 4x daily care will cost over £2000 a month. There will be loads around as care agencies pay peanuts and work their staff very hard. Word of mouth is best way to find someone.

Its worth saying that if you are asking social services to fund residential then the choice to go to residential care will be based on if social services feel its needed.

I've certainly known people who have asked for residential and its been refused as the care needs havent been felt to be sufficient by the people funding. I've also known people who have refused relatives back/divorced as suggested in other posts, and that has only delayed the discharge and sometimes independent accomodation then has been sought (eg bedsits etc) rather than residential care

If you are privately funding that choice can be made by you whenever you feel its right.

There will be probably be a multidisciplinary meeting that you can attend prior to discharge so that everyone involved is clear about your husband's needs and the plans for him.

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?

@Toorapid

Yes in general

Its really hard to have concrete answers because each situation is so different and different people have different entitlements and needs. Obviously covid has turned it all on its head too!

Itsnreally difficult because (as seen on this thread) people might give you suggestions that aren't applicable or are out of date

@Twillow

You need carers. Nothing wrong with this. You are better off looking for private ones as 4x daily care will cost over £2000 a month. There will be loads around as care agencies pay peanuts and work their staff very hard. Word of mouth is best way to find someone.

Sorry - meant 4x2 daily through an agency will cost over £2000.

This is truly awful. Did you know why he’s not suitable for hospice care?

@Whalespeak

Its worth saying that if you are asking social services to fund residential then the choice to go to residential care will be based on if social services feel its needed.

I've certainly known people who have asked for residential and its been refused as the care needs havent been felt to be sufficient by the people funding. I've also known people who have refused relatives back/divorced as suggested in other posts, and that has only delayed the discharge and sometimes independent accomodation then has been sought (eg bedsits etc) rather than residential care

If you are privately funding that choice can be made by you whenever you feel its right.

Sorry I realise this sounds harsh but I've seen the blanket advice of "refuse discharge" and divorcing/ saying your separated being given as some sort of magic wand when it can turn out very wrong

@daisypond

This is truly awful. Did you know why he’s not suitable for hospice care?

No, she did start explaining, but I think she realised herself she was waffling and didn't really know. I will try calling the hospice in the morning.

OP do you have a Social Worker?

@bbbbbbbbbccccc

OP do you have a Social Worker?

No, I asked about this today. Apparently we don't need one yet, not until/if we're referred to social services.

I'm starting to wonder if I'm all stressed and upset unnecessarily because the OT is a lose cannon, or maybe working on a different agenda to everyone else.

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?

Or maybe we don't need one because the discharge plan is medical, not social services?

She kept telling me things very assertively and when I questioned anything told me that wasn't her area.

@Twistered

Op I'm so sorry but I'm kindly going to suggest is going home the right thing for your husband? It sounds like he has quite high and complex needs which sadly will worsen. Being comfortable and good pain management will be the most important thing for him. If the hospice haven't been able to make progress with the pain then there could be terrible scenarios where he is at home in pain on regular basis.

In terms of the proposed care package , what they are offering is what I would expect. However having being in that situation .... Even with carers 4 times a day, 2 district nurse visits, gp visit every 2 days, and a Marie curie night sitter, I still had to dedicate almost full time to caring.

Unfortunately if your husband was to go home I think you would probably need to either take a career break, drastically reduce your hours or else pay for additional care.

It won't be a case of waving bye see you tonight after work. It really won't be.
I'm so so sorry . This is a horrendous situation I know. If it's a case that you must work then perhaps paying for a care home might be a possibility to think about.

I know that my FIL was given free care as cancer is medical whereas my MIL was not and had to pay for it as it was dementia .

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