Advice to resist pressure for discharge of MIL to my home

[Weaktea]

I’ll try to be brief. I’ve cared for Mil at my home for 5 years. Now severe advanced dementia and stage 4 cancer, incontinence she’s 92. A recent fall has left her with a broken foot and she’s on day 9 in hospital.
she is now completely delirious but they have said medically fit and need to have a discharge plan. Would I have at her my house? I’ve said no. They Mentioned hospital bed downstairs, hoists and visits from carers.
she used to have a little
mobility so I could just about shower her but they don’t think she’ll regain mobility.

i was at the end of my tether anyway, they have said they will refer to social services which I welcomed.

what can I expect or push for?

thanks!

You need to be telling them "it doesn't matter what adaptions I have or could have - they are irrelevant as I am not caring for MIL any more".

They won't let her be homeless. It is an awful position to be in but you need to make it clear.

I don't know about the delirium part but I don't think elderly people should stay in hospital as an interim gap filler unless unavoidable. The hospital can't provide the "care" that is needed and activities that stimulate her mind.

The whole system is geared towards saving money but ultimately they will have no choice

They will try everything to get you to agree, including lying and telling you you have to have her.

Don't get into discussions, don't try to explain yourself.
Just repeat no, she cannot come here. You need to find a place for her.

Did your MIL sell a house to move in with you? If she did SS will want to know where that money is so that MIL can self fund.

OP, you will honestly have to be super-firm, tell them you cannot have her back given the state she is in, there’s no way you could cope, and you’re not going to discuss it any further.

Easier said than done, though, I know!

This is why they should never have got rid of those community hospitals. I remember 95 yr old Dh's nan being in one of them for a bit while scare was sorted out. A much calmer environment for them too than an acute ward.

my mum came home to die from dementia and it damn near killed me too. You must say no. Don’t explain yourself. She has nowhere to live now except for a proper care home. Say you are going on holiday if you must but don’t give an inch.

Good for you for saying no. The pressure put on carers is disgusting. I know it is because of budget pressure. But this is just appalling. Its not your problem to solve if you cant have her home. Just keep it simple and keep saying no.

There we are then:

the normal respite place would not entertain her now

If the respite home cannot cope, then neither can you. That's your lever. Use it.

I’m puzzled about what that has to do with my reply or the post I was replying to.

But this is a diversion from the topic

And yet there are threads on here about family carers and the Carers Allowance scandal and the usual NHS worshippers were conspicuous by their abscence. Yet post a thread about how can we improve the NHS and its like a klaxon has gone off. But threads about the family carers who are propping up the NHS............tumbleweed

Lack of care workers will mean more pressure being put on families. Many of us said so at the time and were called granny killers and worse

Sadly you won't cope with this level of need and it is very unsafe. I think a nursing home with visits from you and any other family members will be best for everyone.

OP can I say that you sound like the most wonderful DIL. Your MIL has been lucky to have you.

Just keep saying no. The hospital will have a continuing care team who will find her a placement in a care home. They might initially find something temporary until they can come up with a permanent plan just to get her out of the hospital but they will eventually sort something permanent for her.

My response to this scenario,as someone who works in an acute hospital and knows that a large percentage of the beds are full of people who do not need a hospital but who often have families who are refusing to have them home again due to carer stress, is PLEASE PLEASE do not wait for a hospital admission to decide this. It does sound hugely stressful to be caring for someone with advanced dementia and incontinence etc, but from the hospitals pov, the only change is a broken foot, which is not a massive change and could be managed with carers visiting and helping with washing/ dressing and pad changes.
So many families wait for the crisis and then expect the hospital to sort out the future. Often the elderly people living with their families have sunk their finances into having a granny annexe built or buying a joint bigger property to fit everyone in. These patients can sit in hospital for months whilst everyone argue the toss about who will meet their needs, and meanwhile in A&E patients are being treated in the corridors because there are no beds available.
If anyone reading this is currently caring for an elderly relative and not coping, please have family discussions and involve social services if your relative cannot afford carers or a care home. Dusk to local Carer Support organisation for advice and signposting in right direction.
If you want there to be a bed for you next time you are unwell or even needing a hip replacement or other surgery, then do not use acute hospital needs to house aging relatives whilst their futures are decided.
I know this is easy to say and not so easy to do, but the future of the NHS depends on it's all being a little more proactive with planning for our care.
I am genuinely not lacking sympathy or empathy but see this scenario several times daily and it is crippling our hospitals.

In response to your specific scenario, the OTs would want to know if your mother in law has a financial interest in the house. If she does, and is able to express that that is where she wants to be, they then need to assess if she can be safely managed there. If there is no offer of support from other household members, then their assessment needs to be clear that even if you and your husband were on holiday for 2 weeks, she would still be safe at home with carers visiting. If this is not the case they cannot discharge her home.
You are well within your rights to say you will no longer provide care and if the house belongs to you and not her, or partially her, then you also have a right to say she cannot live there. Hope that makes sense and hope you have a suitable plan soon.

Successive governments have promised to get a grip of social care - but have done nothing, but I know that’s no help to you at this moment.

The other thing to be wary of is Mental Capacity. The SW and the OT argued with us until we were blue in the face that MIL had MC to make her own care choices, which was to stay in either her house or ours. I insisted she didn’t have it as she was complete unaware that it was costing her £7k a month to have a live in carer - she kept telling the authorities she had a ‘friend’ in the house and she was paying them £50 a week as a favour.

We had POA on her health and finances and paid all her bills for several years. The SW was so adamant MIL had full mental capacity that I said if indeed that was the case, we would relinquish control of her finances and when her care bill needed paying, they would have to speak to MIL directly about it - which of course, ended in disaster because MIL didn’t have a clue how to pay it. When the bill reached £15k, they rang me and asked where her cheque book was. I was very blunt and said I had no idea and that they would need to ask her because, “You insisted she had MC”

DH and I fought long and hard to get MIL properly assessed too, but it was never convenient or apparently, “She wasn’t up to it today” when it was so painfully obvious she had no idea that her needs were far to complex to be catered for in a domestic environment.

Sorry, I know I’m ranting but this thread has reminded me of how appalling the system is and how depressing that it hasn’t improved whatever in the 5 years since we went through exactly the same!

Have you been in the position of those family carers?

@SnakesAndArrows I think that's unfair ......I have been in the position of those family members.....but @vdbfamily is perfectly true in all they say. And actually it's hard being the staff who have to put the processes into play to try and send people like this home despite what you think as a patient. The people to be be angry with is The Government who underfund both Health and Social Services and hospitals are fire-fighting to keep any beds available. And definitely don't hit crisis point before you ask for help from any service as they just can't react quick enough.

Out of interest have you tried getting a care home place for someone in this situation without extensive financial resources to go privately?

Families are not just waiting around for a crisis to happen - they are ignored, usually with both SS and the NHS saying Not My Problem.

The crisis often happens precisely because there is no meaningful support until they end up in hospital at which point there is lots of bleating about "care packages" which disappear or deteriorate as soon as the patient is off their premises and "adaptations" which never materialise.

Well, I agree with you. But the PP seems to think it’s the carers’ faults for having somehow not foreseen and prevented the crisis. This is grossly unfair and lacking in empathy.

Yes, I know exactly how hard NHS staff have it, but they are there for their 37.5 hours a week. Carers are on duty 24/7.

Oh, and there is no help unless you have hit crisis point.

They will pressure you to move your MIL.
Whether that’s to yours or a care home as they will need the hospital bed.
Suggest you check out local care homes asap that have availability.
Surprised she’s not being offered 6 weeks respite in a care home. The nhs used to offer this in cases such as your MILs ( over about 10years ago ). Ask if this is available whilst you look for an alternative.

In answer to your question, I have watched/ helped my mother care for her MIL, ( living with us, advanced dementia), her great aunt( living nearby with severe arthritis and eventually in a care home) and my brother( at home with his wife, dying of brain tumour until he got a hospice bed) so I have 35 years of professional experience and a fair bit of lived experience.
My parents have down sized to a very sensible 2 bedroomed flat. They have advanced directives are are very clear that if they cannot manage at home they need a care home. They are clear their money should be used for this and that we are not too go through what they weren't through.
For what it's worth, I would try and persuade them to live with us if they needed to, before care home placement, but if they ever needed night time care or were not safe between care calls, I would be looking for long term placement.

@SnakesAndArrows It's not about how physically hard, or how many hours they are there for.... it's the absolute fact it goes against your own morals and is absolutely not what you would want to happen to your own parents for example. It is about having to do things that the hospitals policies tell you you have to do, because essentially the government say they have to. All they can do is do their best for each individual patient and situation. There are still only a limited number of hospitals bed....which the government want to reduce with the aim of returning more and more people home. Now that is generally best...but not always and yet the surrounding services are not in place to pick-up the pieces