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.

This all sounds a bit of a muddle to me - which is the last thing you need at the moment - I have not read all the latter posts but I really think you should seek advice from MacMillan - they will have seen/heard all this before - apologies if someone else has said this.

MacMillan 0808 808 00 00

If you have a hospice nearby I would really recommend transfer when ready to a hospice. Most allow at least 1 visitor at the moment and they are great at managing pain and also organising discharges whilst involving the family with every step. They also have social workers and give great support not just to patients but to their families as well.
Hospices are not just for patients at the very end it’s for anyone with a end of life disease that’s needs help with symptoms, emotional support, or carers support. Your Macmillan nurse should know more about your local hospice.

@Yolanda524
The Macmillan nurse has already said that the local hospice isn’t not suitable.

Ok, so I had a long chat with the palliative care doctor yesterday. He has spoken to the hospice and agreed that DH would be suitable for a short placement for intensive physio and pain management and he will make the referral. Unfortunately DH now has an infection and seems to have gone downhill rapidly, very confused, I can't talk to him at all about how he feels about a spell in the hospice, I can't get him to focus long enough to make any sense, although the doctor insists that face to face, he's only very sleepy, not confused, he seems confused to me. He won't go anywhere until the infection has been identified and treated.

No visitors at the hospice either, until end of life.

I'm really worried now about the no visitors thing. Less than a week ago, whilst not being able to see him was awful, he was having nice and meaningful conversations with both me and DC. Now he doesn't make it to the end of sentences and his texts are gibberish.

If they are treating him for the cause of the infection this delirium should clear up. They must think he has a reasonable chance of making some benefit from a period of symptom control at the hospice so that may still be on the cards when he's hopefully picked up by the middle of next week.

@Toorapid if it's any consolation my FIL had a UTI /was severely dehydrated and it make him delirious . He told us he was in Madrid with Princess Diana among other things. He was sitting acting as if he was eating food and speaking to people. Once it was under control he was his old self . Try to take it a day at a time currently . I'm sorry you are having to make these difficult decisions .

When my FiL came out of hospital they arranged for a carer to come in the morning to help him get up, wash him, help him shave and dress him and get him to toilet then into chair. I think 30 mins. Then my mil gets him breakfast and helps him to loo. He can.justbabouybwipe himself once on loo. She helps him get back to chair. Mil helps him go to loo on commode during day. At 7.30 carer comes, washes him, undresses him, gets him to loo then into PJ's then up stairs to bed. 30 mins given. Mil has to help him to loo if he needs it during might. He hates going to bed do early but that was when carer had a free slot. FiL gets carers free as not much savings. If you have savings over about £23k in you have to pay for own carers. They should offer him a package of care. Be firm on insisting you continue to go out to work because you will need it for your own mental health to get out of the house, otherwise you will just end up becoming his carer as well as his wife. If he can remain employed by his company he might.haveba death.in service benefit which is usually quite high. Does he have critical life on your mortgage policy? You are being very sensible in thinking ahead to how/what your life might be like in the future. Do sorry you are both loosing your future together. It must be a huge blow. I knew a music teacher who's wife was dying and given about 1 year to live. He wanted to take early retirement to care for her but she forced him to carry on working. After she passed he told us she had been right because if it was not for having to get up to go to work he would not have bothered getting up all week. He admitted to not getting up some weekends. He said his job and colleagues/friends hot him through. Don't give up your job especially if you like it and have good colleagues/friends. You might really need their support later op. That is not bring selfish it is survival mode kicking in. You must ask if you can speak to your DH consultant and ask them how your DH will manage whilst you are at work.

I don't want/need to cash anything in now. We have enough cash to cover imeadiate need, it's what's left for the future that concerns me, but less so now I'm coming to terms with the fact that life isn't going to be what I expected anyway.

He can't get out of bed, with or without help. I'd be deliriously happy at the thought of helping him to the commode

@Toorapid I'm so sorry that your husband has worsened, I'm glad you chatted with the palliative care doctor. I do think a short assessment period in the hospice is the right thing here, though, he's very sleepy/confused which may or may not be related to an infection, they will be able to assess and treat that (or decide it's related to something else), plus should be good at getting on top of the pain, they can also give drugs for delirium/paranoia and so forth if necessary. If he's unable to stand/move at all, and there are significant issues in terms of pain, mobility, and what's going on, then once they have stabilized him they may suggest him going into a nursing home rather than care at home, but at least this will buy you some time to think these things through, get yourself and possibly him (if he's awake and aware enough) to chat this through. Hospices are amazing but they don't keep people long-term but they are better positioned to make assessments of likely longevity and good places for him to go (or home hospice) than some OT on a general ward. I would think this would be a good option. Unmumsnetty hugs for you.

I finished up doing all sorts of things for my OH that I did not relish: putting suppositories up, wiping up "accidents", dealing with his catheter condom and pipework/bags etc. etc. But I never tried to lift him or transfer him as I knew it would do my back in. Even various standing aids were a problem; so in the end he went into a nursing home.

I am sorry to sound blunt OP, but you must not agree to do anything that puts you at risk, physically or emotionally. It is fair on neither of you. He needs professionals with the proper equipment to keep them and him safe - and the availability of two people to transfer.

I know how hard this is for you and my heart is with you.

A hospice place is what he needs at the moment and I hope that there is some way that this can be arranged when his infection and delirium have settled. I realise that the pandemic will complicate visiting arrangements.

Thinking of you @Toorapid
Keep posting-there are a few palliative care specialists who will be glad to help.

And just be assured, people leave hospices! People with eventually terminal illnesses are often taken there for pain management/stabilize and then moved out to a nursing home or back home.