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.

unless the definition of medically fit now includes the need for 24 hr nursing care

It does.

Medically fit means not receiving acute medical intervention requiring hospital care.

@Toorapid

Your head must be all over the place and you’ve been thrown into a new world. It’s scary and anxiety provoking. It’s very important you take care of yourself.

You’ve been given some well meaning but wrong advice but also some excellent advice.

I’m a social worker in adult care.

1. CHC - do push for an NHS Continuing healthcare assessment. Your husband may be eligible for this and therefore, receive care that is not means tested. Even if he if not eligible now, he may be in the future, so it’s worth doing some research.

1. Financial management - please don’t move money around. Local authority finance teams know. To reassure you, assets in his name will be included, as well as joint assets but not assets in your name and not your home.

1. Carers needs - as a carer, you are entitled to a carers assessment from adult social care. Please ask for one if it’s not offered. This does not mean you need to give up your job or undertake all the care. However, you are entitled to support in your own right. Your DC may wish to have support too.

I’m tired but I hope this is somewhat helpful. Please feel free to ask if you need clarity.

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

To an empty house without even an assessment or a discussion with the family to let them know you have assumed they can drop everything and pick up nursing care?

Come on, 24 hour nursing care is not something families are qualified to give even where the patient normally resides with them and care packages don't cover it (as we were told in no uncertain terms). I'm not talking about a bit of help I'm talking about dressings changes, daily blood tests and a whole range of other measures including not being allowed to go to the loo alone due to blackouts.

Moving to a less acute ward is one thing. Being booted out into an empty house is another altogether. Assessments when they happen are not done on the basis of need but on the basis of budget.

Something to bear in mind with all the sorting the finances and care package issues is that THIS IS WHAT YOU HAVE THE SAVINGS FOR. Your husbands savings and pensions now only need to last as long as he does frankly (sorry to be so to the point) I get really frustrated with people with short life expectancy still clinging onto savings instead of using them to support themselves being independent. There will likely also be the possibility of none income based benefits such as PIP and you may be better with a carer of your own (or two) plus yourself and that they do caring and housekeeping role for the patient - freeing you up to spend off time with your DH or doing enjoyable things rather than personal things. I would work on getting an immediate care plan in place and understand what realistically the OTs believe he will be able to do going forward. You can then work on what the routine at home is e.g. if he has a midafternoon nap you could have some one in for early morning and up to 1pm, then say someone 3 to 7pm including. Whatever you do if you are paying yourself you need to work out a relationship with local agencies or carers and whether you need someone medically trained or just caring.

Whilst not for now, once its clear that a persons time is close its possible to switch to a palliative care pathway and this brings other things to play and you can have hospice at home and also Macmillan overnight help (not just for cancer) which was a godsend for our family when Mum was approaching the end - she was a very capable ex sister who sat up ALL night with Mum, freeing us to have a good nights sleep so we could start again in the morning.

Other useful things include local care homes hiring out bathing facilities if a person is immobile - so they have all the lifting equipment and staff etc to allow someone to go and have a bath and be redressed etc - meaning you also get a couple of hours off to so something for you even if its sit with a cuppa

There are often local societies which are charitable places that can help out - one local to MIL had some "Komps" which are like skype but no button pressing - they kick in automatically so you can speak to someone directly even if they can't answer a phone or handle a skype call etc. Its not a general access unit you have to have specific information to contact the individual but it also means you can check on people as well and whilst not cheap (Unit is 500 I think ) then you pay a mthly rate (like a phone) can be good to reduce isolation and the need to have people in the house.

I think you may have misunderstood. I doubt anyone is expecting you to care for your husband 24/7. If he has rehab potential he’ll be referred to a rehab hospital (or have rehab at home) whilst in hospital occupational therapists/ discharge coordinators will arrange a package of care (likely 4 times a day given his level of disability) and they’ll arrange an access visit prior to discharge to ensure equipment will be able to fit around your home. Given his prognosis he’ll have some sort of palliative care input at some stage. With regards to personal care (wiping his bum) I also find strange that family members don’t want to do this but expect carers on minimum wage (who don’t love your family members) to do so

State funded 24 hour nursing care at home simply does not exist.
Again OP, please be very wary of the information being given on this thread about what ‘should’ be available versus the reality of what IS available. Nursing agencies can provide registered nurses and nursing assistants for longer shifts at home but that has to be privately funded.
District/community nurses will visit to change dressings, catheters etc but those are short visits.

‘hospice at home and also Macmillan overnight help (not just for cancer) which was a godsend for our family when Mum was approaching the end’

Sorry to hear about your mum but again just want to point out that there are huge regional variations with regards hands on palliative nursing services. Hospice at Home services ( hands on nursing care) are only available in some areas. Not all hospices have this service. Marie Curie overnight nurses are variable in terms of availability and frequency. In many areas, a maximum of three nights a week for the very sickest patients is the norm in the very last days/weeks of life.

First - I am really sorry op you are in a horrible situation.

Second - I am a CAB adviser. You should find out if your husband will qualify for NHS continuing care. If you have a Local authority social care assessment that will be funded by you if you have considerable savings as LA social care is means tested. Your DH may qualify for NHS funded care which is not means tested.
www.nhs.uk/conditions/social-care-and-support-guide/money-work-and-benefits/nhs-continuing-healthcare/

It is certainly worth getting an assessment - have a look at the link, sometimes the NHS will part fund care in a joint "package" with the local authority. Also worth speaking to your local CAB and carers support groups to see what is available in your area.

Good luck.

@buttheywereonlysatellites
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.

Did you miss the bit where I said SHOULD BE AND SOUNDS LIKE he's entitled to CHC
And yes you can refuse 6 weeks depending on the situation looking long term with someone who won't improve .

Ignore everything C8H10N4O2 states, its very combatative and suggests everyone in the nhs doesnt want to do their job with any compassion or proffessionalism

The reality is if someone is medically for discharge, ie they no longer have acute medical needs. The hospital will want to discharge, it he has complex or a high level of nursing needs this could be to a nursing home, which would need to be funded either by social care or your husbands / joint finances. If there is any potential for rehab, they will refer for either a rehab bed, or rehab at home, some of which includes a funded 6 week care package, if after that he needs long term care, they will recommend this and do the assessment. If however there is no rehab potential then the reality is a long term care needs to be organised and paid for. As i stated j an earlier post liaise with therapists and discharge coordinator, they need to involve you in conversation if you are going to be supporting at home ie providing meals / domestic support , even if you are not able to do personal care . They still need your husbands consent to do so .

As an addendum, no one can give you the exact process to follormw as every trust has slightly different ways of working, but generally the process of discharge from hospital is similar. If he was end of life a hospice bed could be considered, but it doesnt sound like this from your post? If he has anything that carers would struggle to manage at home then it can be take longer to get support in place, but not impossible. I think another poster suggested live in care, it could be worth considering though i dont think it would be 150 a week unless they had very short hours when they were expected to work

You need to talk to social care.

If he needs a lot of nursing you need to ask about CHC funding (continuing healthcare). It’s hard to get but means all care is free if you do get it, so it’s at least worth asking the question.

There should be a social worker in the hospital you can start by talking to.

Sorry I keep thinking of things - one of the fastest ways to get things moving is to refuse to take him until a care package is in place. It’s very emotionally difficult to do but once he is home and you are doing everything no-one will be in a hurry to do anything.

If your DH isn't mobile, you'd need carers anyway, as two people are needed to use the equipment.

There should be a social worker in the hospital you can start by talking to.

From experience, this is the first port of call. There WILL be hospital social workers and one needs to be assigned to your husband before anything else happens.

Its not as simple as refuse to take him until care is in place. If social care is responsible for funding it, they wont intentionally discharge someone who is bedbound and needs help getting out of bed / toileting. If you are going to have to self fund thrn it will be your responsibility to sort out the carers, therapists / social worker can advise on number of care calls etc, and then the private agency will do their own assessment accordingly. Work with the team, be honest what you can and cant do, there is no shame in not wanting give up your job and become a full time carer. We are all human too and fully understand that working in a caring / health profession is completely different to becoming a full time carer to a person who is your life partner or parent. If you want to be able to buy in extra care at any point, keeping your job on will allow you to do this, rather than be at the mercy of what social care can / cannot fund these days.

[quote rwalker]@buttheywereonlysatellites
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.

Did you miss the bit where I said SHOULD BE AND SOUNDS LIKE he's entitled to CHC
And yes you can refuse 6 weeks depending on the situation looking long term with someone who won't improve .[/quote]
No I didn't miss that bit. But I with a say again, with the extremely limited info we have, it's incorrect to say he "should be and sounds like" he'd be entitled to CHC funding. I've worked with a lot of bed-bound clients over the years, and only a tiny number have received it.
If you get 6 weeks free care on discharge, it will be reviewed.

With regards to personal care (wiping his bum) I also find strange that family members don’t want to do this but expect carers on minimum wage (who don’t love your family members) to do so

I would far rather have a stranger provide intimate care for me than my husband or mother. I would also far rather provide it for a stranger than a loved one. I think a lot of people feel the same.

I've no expertise it advice OP (except to reiterate the advice above about contacting your husband's employer, life insurer and pension providers), so I'll just wish you all the very best.

Huge worries for you both financially, emotionally and practically.
I have only skimmed the thread and not sure if anyone has mentioned mortgage.
If your husband is no longer able to contribute towards your mortgage surely it would make sense to make a capital repayment from his savings and reduce your outstanding mortgage balance?

I would far rather have a stranger provide intimate care for me than my husband or mother. I would also far rather provide it for a stranger than a loved one. I think a lot of people feel the same

I'm sure they do, but with very expensive care placing limits on how many carers/care you are going to get, you sometimes have to just get on with it. I feel proud that I made my husband feel secure and loved (including bum wiping) at his most vulnerable phase of his life.

Request a care package

So much depends on the individual person from whom you ask advice. With my DM, some of the best and most accurate advice I got was from an admissions person at a nursing home, as she dealt with our situation all the time. By contrast, the social worker at the council was overworked, and had no idea about anything, which made things even more stressful.

Oh absolutely @SignsofSpring, I'm full of admiration for anyone who does, and I understand the realities that can lead to it. Personally, my political view is that care should be provided by the state, but I know that's idealised and very far from the realities families face. I was just addressing @England101 's point that she doesn't understand why people wouldn't want to. Ignoring practicalities, finances etc, I think a hell of a lot of people would rather keep intimate care outside the family.

I agree entirely with @C8H10N4O2 This has been my family’s exact experience with a grandparent, so much so that I have made an official complaint about the handling of their care. Social workers have lied, been negligent and no one appears to take responsibility for anything. The 6 week transitional bed funding has been extended for DGP this week as all parties involved failed to complete the necessary assessments. One social worker claimed to have completed a full financial assessment over the phone when DGP is profoundly deaf. A) that’s not her job, it’s the LA finance team’s B) if DGP doesn’t have capacity (decided on the strength of this one call), how can he possibly be aware of his finances?

The whole system needs an overhaul. I’m pushing for continuing healthcare funding and now have a solicitor involved.

To the OP, I really feel for you. The only way to ‘win’ in this situation and to get the care your DH needs is to go the legal route.