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.

And don't divorce. Ridiculous suggestion.

Big hug first of all.

Yes, things are a bit overwhelming now and you are still mourning the 'life you should have had'. I have been through this with my parents. Please do do not underestimate the extreme toll caring at home (for this level of incapacity) will take- even if you have 3-4 visits a day from carers. In the end with my parents, a care home proved the much better solution for everyone. Covid is a problem but vacines will help.

As PP have stressed- don't let anyone corner/guilt you - particularly into taking leave to care. In your position, I'd spend DP's entire half of assets on care and then let social funding take over - before risking my sanity and health.

Lots to do (grab a new notebook) - first three chunks to get started on.

1. Self care. Who can support me now? Who can I ask for help? How do I look after myself now? How do I give myself time and space? Call in any chips.

1. Understand and maximise assests/funding. What will be ring-fenced as yours/what will be included as part of financial assessement? Early DH pension cash in/other options? Death in Service Benefits? Insurance? Other funding sources?

1. Investigate care and support options - his needs, your needs, care plan, nursing/care home, hospice help, charity help, community help, societies help, your employer flexibility.

This my area of work as an adult social worker.

In short, no you don't have leave work, but whether it's financially worth you working is dependent on a number of factors.

Savings in his name and savings in joint name will be taken in to account and moving those savings would be considered a deprivation of assets.

Social care (e.g. carers in your home or a residential setting) is means tested and if your DH has over £23500 he will be self funding.

If he is bed bound, he may need 2 carers per visit to do the care, this will be double the cost. Between visits (which last 15 minutes to an 1 usually) he will be left alone. If he isn't safe to be left alone then he would likely need residential care. Toileting between visits would be with the use of continence pads.

If he is going to be self funding you may be better off organising the care yourself rather than going through duly social care.

Before he is discharged request a CHC assessment. It's unlikely he will be eligible bit there's very little to be lost from having one.

@SoUmmYeah can I ask; regarding joint savings, is the whole amount taken into account, or 50% to reflect that half belongs to the partner and half the the client requiring care?

I am blown away at the (thankfully few) posters on here who seem to think the OP ought to stop work and provide round the clock medical and intimate care for her husband. It is something neither dh or I would want for our other halves. Especially with young adult children, mortgage, full time work all still in the mix

I agree, however what is offered is often far short of round the clock medical and intimate care. At home care is usually (and at its most generous) 4 x an hour a day, that leaves 20 hours uncovered which the person has to have changes, bed changes, food and drink and so forth. You have to think about how you are going to fund either those 20 hours (and you may have to pay for the 4!), or have the person go into a nursing home if you don't want to do any intimate care yourself. You can have exactly what you want, if you can pay for it, but care is very very expensive.

It's not a question of wanting to do it, I'm sure my poor husband didn't want me wiping his bum, but if it were that or him sit in it waiting for the next carer's visit, it's a no-brainer. Sorry to be blunt, but imagining there's going to be free or easily provided care for people is just not the reality of what's on offer. I'd like to see a social insurance system where we all save our entire lives for this (like a care tax) because it's too risky and stressful in the current form.

Hospital nurse here. Firstly, I just want to say that I'm so so sorry that you guys are in this situation.

Re: discharge plans....please please please, speak to the discharge team at your husband's hospital. You guys can set up a telephone appointment (we facilitate this at my place of work). Alternatively, contact Physio/OT and talk to them about what you can/can't do. They should document this conversation in your husband's notes and liaise with discharge team.

Speak up about what you can/can't do. There's no shame in saying no to your doing things whatsoever. It should be obvious to anyone with half a brain that of course you need to still work/ be in a position to be able to bring some money in AND be there for your DC (and look after yourself too). That's not being selfish at all, it's being sensible and practical.

I certainly would be surprised (and would want to talk through things with you) if I was looking after your DH and then found out that you'd be taking on all his care. I'd be concerned about how you'd cope with juggling things and I'd be very worried about you making yourself ill.

I would rather have a full and frank talk with patient, NOK and discharge team to come up with something that would suit all, before patient is discharged. I've seen too many NOK who have been brought to their knees by being thrown into a carer's role (often guilt tripped into it - or have been put into that role by patients who have assured staff that, "don't worry, my DW/DH, DD/DS will do everything. Oh yes, they're fine with it"*) and it gets me so cross. So many times, we've had a quiet word with NOK to tell them that it actually is ok to say, "no, this won't work for me".

*NB we've had this before, so we always have a good talk with family rather than just assuming!!

The doctors won't know what care is available (and to an extent, neither do us nurses). We like to think that it would be as easy as to say that Mr X needs this or that care package, and it would be provided. But we know it doesn't work like that (it's a bloody minefield). The Discharge Team would know better, and would know the rules and regs.

Tell me to bugger off, and forgive me if this upsets you, but have you explored the idea of residential/nursing home care? The only reason that I say that is that it means that the responsibility of the caring is shifted to the home, rather than to you. They would have the necessary equipment and adaptations in place already, and they'd have the staff there to meet your DH's care needs. It would also mean that you could spend time with him (well, once covid is over with) and have real quality time, where your role as spouse hasn't been blurred by that of carer (if that makes any sense?). It would also mean that there'd be more people around during the day, so less worries about DH left on his own whilst you're at work. It's just a thought, but I've seen it work beautifully for many of the families I've known through work.

Getting a POA (one each for health and for finances) would be a good plan now. Along with sorting any Advanced Directive (living will).

If I was looking after your DH on the ward, and you were to telephone me, telling me what you'd said here, I wouldn't think you're selfish at all. And I'd make bloody sure that that Discharge Team knew your thoughts and concerns about everything. Please don't hesitate to let them know. If you are listed as your DH's NOK, then they should be able to discuss the discharge plans with you. Even if they won't discuss things with you, just make sure they know your concerns and what you can/can't do xxx

What a helpful and caring post tictac80. 😊

OP I was in a similar situation with my mum who was self funding, and we were faced with a huge care bill for visits of 2 people every two hours to turn her - day and night. It would have taken all of their savings and Dad has his own care needs - dementia - which need seeing to.

I found a live in carer at £150/day. Then we only needed to fund a second carer, for the two hourly visits. I also bought a Toto matress which cost c £2500 which inflates and deflates to turn the patient gently every 2 hours. That meant that we didn't need night visits to turn her at all. It paid for itself in 6 weeks of saved care costs.

So with a live in carer, one inflatable and four visits during the day to assist the carer with hoisting and cleaning, and to give the carer a daily break of 2.5 hours, we drastically reduced the costs of the care package. It still wasn't cheap but it didn't eat up all of their savings.

Note: live in carers can be much more expensive from an agency. However, self employed carers can work out well. I will pm you with the details of one company which takes references/does DBS and ensures that all the carers advertising on its portal are up to date with their training. The carers pay a fee to be recruited and checked by the agency, but it keeps costs down. It's also possible to find two carers via the site so that if they want to work a week on and a week off, or if one carer wants to work weekdays and another to do weekends, you can mix and match.

Best of luck

@PussGirl

He would be entitled to Attendance Allowance I 'm sure - I don't think it's means tested.

no he wouldn't, AA is only available to older people and this is someone in his 50s. He should be eligible for PIP though

@mrdobalinamrbobdobalina

50% so everything in your sole name and 50% of joint name stuff.

Yes 50% of the joint savings and investments.

Emma - thanks - I already apologised for my mistake

I see updatemate beat me to it!

Former carer for relative here.
I found that the amount on emotional BLACKMAIL that went into forcing discharges was nothing short of cruelty and bullying. This led to dangerous situations for both the patient and carer. No support from social services they are trying to save money by making the carer feel there is no other option.
At the end of caring I had time to visit my doctor and I was found to be suffering from multiple condition. It had all been put down to the stresses I had while caring. I went from carer to a disabled person. I believe that my current state is due to all the pressure of caring.
The NHS are supposed to care from the cradle to the grave. If there was less waste of money in the NHS they would be able to do so rather than line the pockets of those who open Care Homes

@StellaDendrite

What a helpful and caring post tictac80. 😊

Hey Stella, I don't really think my post is that helpful or has much practical advice like other posters! I know naff all about the rules and regs of home care, finances, pensions and such like: I only know the basics and believe me, different regions will have different rules. Like I said, it's a minefield. In a dream world, I would be able to conjure up the perfect care packages for every single one of my patients who needed them, in a way that would suit them and their loved ones.

But, as a nurse, I would just hate for OP to be fretting and worrying about feeling selfish, not caring, etc. It is/can be damned hard work looking after someone who requires assistance of two with their care needs. For family to do it in a home setting, it can be relentless.

It's easy for me on the ward, as I can go home after a 13hr shift, I have people working with me (ok, we're short-staffed but I can always find someone to help me!), we've been trained to look after patients, we have the equipment, space etc needed, and we have the help of a multi-disciplinary team should we need it.

I want her to know that it's ok to say no, and that she shouldn't feel guilty about it, that we HCPs won't think bad of her. Life dealt her and her DH a shit hand...now is the time to try and navigate through that shit as best they can and in a way that means that she keeps her health and sanity xx

@Notverygrownup

OP I was in a similar situation with my mum who was self funding, and we were faced with a huge care bill for visits of 2 people every two hours to turn her - day and night. It would have taken all of their savings and Dad has his own care needs - dementia - which need seeing to.

I found a live in carer at £150/day. Then we only needed to fund a second carer, for the two hourly visits. I also bought a Toto matress which cost c £2500 which inflates and deflates to turn the patient gently every 2 hours. That meant that we didn't need night visits to turn her at all. It paid for itself in 6 weeks of saved care costs.

So with a live in carer, one inflatable and four visits during the day to assist the carer with hoisting and cleaning, and to give the carer a daily break of 2.5 hours, we drastically reduced the costs of the care package. It still wasn't cheap but it didn't eat up all of their savings.

Note: live in carers can be much more expensive from an agency. However, self employed carers can work out well. I will pm you with the details of one company which takes references/does DBS and ensures that all the carers advertising on its portal are up to date with their training. The carers pay a fee to be recruited and checked by the agency, but it keeps costs down. It's also possible to find two carers via the site so that if they want to work a week on and a week off, or if one carer wants to work weekdays and another to do weekends, you can mix and match.

Best of luck

Equipment such as a Toto can be provided if it's clinically indicated. Assessment would either be by the OT or nursing team (as it's about skin integrity)

Notverygrownup

How long ago was that?

The rules have fairly recently changed regarding live in carers and fair wages and £150 seems a bit cheap for post rule change, though it depends on the contract and how many hours they need to work etc.

There are some very, very dodgy agencies out there finding live in carers and it can place you at risk of falling foul of the modern slavery act! But a live in carer can be a great option done right.

Hospitals are kicking people out way before they are ready. My fil was kicked out and now he’s paying £££ for private home carers.

@PurpleWh1teGreen

I'm so sorry that you & your Husband find yourselves in this incredibly difficult situation

You are right to flag the issue of your savings. It's a while since I've worked in discharge so things may have changed - please double check my advice here, but the categories certainly used to be.

• Continuing health care - means tested
• free nursing care which is not means tested, usually linked with CHC so there may be some package elements eligible for funding and not others
• End of life care for those with a devastating/deteriorating diagnosis. Also not means tested.

What this means is that if you have savings above the means testing limit, your husband needs to qualify for the FNC or end of life element, often referred to as FastTrack.

The nursing element might cover things like nutrition & safety, but wouldn't usually cover personal care.

Having said that if you apply to panel for FNC / fast track and are turned down, you have up to 7 years afterwards to apply to the ombudsman for appeal, so potentially if you use your savings it isn't the final position.

My best advice is to push the assessment that goes to panel really hard and make sure it is as detailed as possible.

Your advice is incorrect.

CHC is not means tested. That's why it's known as the best kept secret in the NHS.

Surely his occupational pension won't disappear if he retires on medical grounds? He may lose a year or two but it's my understanding that pensions should be paid if further work is impossible. I think you should be making enquiries with the HR people at his employer.

And yes, to taking a hard line with regard to a social care package. If he's in need of full-time medical care, then you shouldn't be palmed off. There's a large court case in progress over whether the NHS/SC should assume more and longer-term responsibility for dementia patients. But I am no expert on HR, so I'd look for better qualified advisors.

@ekidmxcl

Hospitals are kicking people out way before they are ready. My fil was kicked out and now he’s paying £££ for private home carers.

Hospitals are trying to get people home once they are medically fit for discharge. The beds are needed, and remaining in hospital increases the risk of hospital acquired infection which of course includes covid.

He will need nursing care so you will need a care package in place, usually means having care staff in and out throughout the day to care for your husband. Each council is different but I know my council will pay for up to six visits by care/nursing staff daily.

You’ve had a lot of advice and been given a lot of information on this thread and you’ve given very little information about his diagnosis, current level of care needs and anticipated care needs.
So I think you need to be cautious about managing expectations based on what people have said here, which may be based on very different scenarios to your own.
There will be a huge difference between needing to provide 24 hour care for someone who simply can’t be left alone for a second, to someone who can safely manage with intermittent carers calling through out the day.
Depending on where you are in the country, you may qualify for ‘direct cate’ payments. These are not insignificant payments and may be worth considering.
It’s definitely worth discussing the option of a career break.
Also, as previously mentioned, depending on his diagnosis, charities such as MND can provide loads of practical support.

I appreciate that this must be totally overwhelming.
The first things I would do is to ask to speak to the nurse in charge of the ward to find exactly where things stand with regards discharge planning and get contact details fir his allocated social worker.
Secondly, seek out specific support from other families dealing with the same diagnosis and prognosis so that you get a realistic idea of some of the challenges.

There's also a lot of advice being given on here which is simply wrong. Hospital Discharge arrangements changed in August last year, so anyone saying that you need to insist on an assessment before discharge is out of date. The new Discharge to Assess (D2A) protocol is to ensure that people don't stay in an acute hospital bed any longer than they need to.

Speak with the Discharge Team and also speak to a financial advisor if you can.

And make sure you get support for yourself. Carers Trust is very good for this.

@HildegardNightingale Yes, PSP with atrial fibrillation managed by a pacemaker. Thanks for the heads up, we’ll look into it.