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!

Don't even engage. Just tell them its not possible for you to ahve her living with you and repeat if necessary

You need to tell them it's utterly irrelevant what your house is like, since mil won't be returning to it! They are trying to push you into this - any sign of willingness on your part and they'll absolutely guilt you into it, whether you can cope or not! Your mil needs professional help at this point

I'm sorry you're in such a difficult position. I think you really do need to be very clear that you can't manage your mother in law at home and be prepared with lots of reasons, such as you don't have room for a hospital bed, hoist etc and you can't remodel your house around her needs. You won't be able to manage changing her bed if she's unable to mobilise and you can't manage her incontinence. If she's also got delirium on top of the dementia, then that will be incredibly difficult to manage. Having caters three or four times a day won't help much. Please understand that if you let the hospital send her home, you will have a truly horrendous time getting Social Care to ever help you to find a nursing home place when she doesn't improve and you will need to be available to deal with any of her care needs 24 hours a day.

As you and others have said, it's very very difficult to get continuing healthcare and we've recently been through the process with my mum and mother in law. In my mum's case I appealed at every stage until the NHS England appeal. I made the mistake of using one of the legal companies who specialise in obtaining CHC funding and they were a total rip off. My mum was in a similar situation to your mother in law and when I first spoke to Compass, they told me that I had a strong case and relieved me of £5,000 to prepare her case. I had to chase them constantly, and paid another £1500 to have someone who seemed extremely junior attend the decision support tool meeting. She spoke twice during the entire meeting and only produced the detailed report about my mums needs on the day that the Panel were meeting to consider the DST meeting recommendation. I got good free advice from Beacon CHC but I woukd avoid the other companies, especially Compass, like the plague. If you have the time to research properly, you know your mother in law better than anyone outside your family can, and you will be able to present the case for funding better than anyone else.

Unless you are prepared to provide around the clock, 24 hour care you keep saying no. Do not engage, as once they come to you, you’ll be left with no support.
Instead of enjoying your time with them, taking them out, you turn in to a zombie.

Dementia patients are really hard to take care of, they wake up, wander about, get up to all sorts (and you have to rest sometimes).
I’ve been there and done it, helping my DM care for my aunt. She let herself out, wandered and fell in the road, thank goodness a kind man brought her back to us.
This is someone who wouldn’t move from her chair without assistance. It was so hard, in the end she went to residential care and was actually very happy and safe. You don’t need reasons, you just say, “no sorry, we can’t”.

Have they checked her for a water infection? Is she drinking enough- that can cause hallucinations etc.

They don’t bloody get to ‘grill’ you.

All they need to know is whether you consider yourselves able to continue to provide care. The answer is no.

You’ve got many interlinked reasons by the sound of it - it’s too onerous now with the extra needs and is too much for you both mentally and physically, as well as it being (in your opinion, which is all that matters as this is YOUR home and YOUR time) unsafe for MIL.

You do not need to explain that to anyone. You do not need to justify your decision about how you run your life.

I suggest you shut it down very directly or you will simply get tied up in the guilt tripping, which is stressful for you and simply delaying MIL care decisions that THEY now have to make.

Do you have children, op?

A job?

How has this all fallen on your shoulders?

Say NO. This calls for specialist professional care. It's not fair on you and it's not fair on your MIL. Poor lady, she needs what you can't give now.

Don't get drawn into discussing the reasons why, as they'll suggest some support/equipment/adaptations to solve each 'problem'. Just don't have those conversations. You are not obliged to have her back into a situation that isn't good for any of you. Have a clear statement ready that she will not be returning to your home and she needs alternative accomodation.

Start looking for nursing homes yourselves - you can look for one with a space that takes the public funding if she won't be paying for herself, and then ask ss to sort out the funding.

@Weaktea you just have to reitterate that you cannot have her in your house anymore. you are struggling! dememtia patients are not at all easy to cope with but the lack of mobility leaves you doing everything for her and she is not even your mother! has your husband been receiving calls from the hospital? are there siblings who are involved but not involved in her car?? what are they doing about it?? why is it all being left to you?? I certainly would not be giving up my lounge to care for any relative, mine or hubby's!!

What we found works was the term 'safeguarding concern'. You can ask for it to be noted on the records, keep repeating that you cannot have her back and that you have a serious safeguarding concern because you cannot look after her safely.

This, along with “unsafe environment”. Just keep repeating the buzzwords and shut down any attempt by the hospital to further pressurise you. Ask if they have a transitional or step-down ward for people who are medically fit but physically and/or mentally incapacitated and ask for her to be transferred there or to a rehabilitation unit.

The hospital will prioritize finding out what you can put in place at home yourself for MIL and they will then tell you how to get support through social services for the gaps.

The reality is, they will send MIL back to you and you will fight tooth and nail for 12 months to get anything at all.

The way forward is to refuse any further discussion about your home and what you provided in the past. Do not let them discharge her without:

Full assessment of need
Named nursing home to meet need
An available space in that setting that she is transferred directly to

You can be involved in looking at the care home options with them. Tell them that’s the limit of your involvement and request a named social services contact. It sounds harsh but for everyone’s benefit it’s the only way.

‘No, she cannot live with us anymore, we are not able to meet her needs and it would be unsafe for her.’.

’No, I’m not going to be discussing my home or adaptations. This is not relevant. As I have told you, she cannot live here anymore’.

Just keep repeating. You are NOT obliged to answer any questions or go along with any of their schemes. All they need to know is you can’t have her living with you anymore.

If you own the home you have the right to decide who lives there so you can legally say that she is not coming back to that address, even if that makes her homeless.

And delirium can take 6 months to resolve and they won't be able to keep her in hospital that long as still classes as medically fit as doesn't actually need hospital care

You just say she can't come here end of, I can no longer manage and hang up every time.

You need to be really firm, OP. You just can’t do it, it shouldn’t be on you to sort it out.

OP, if she has advancing dementia then she'd be just as confused at yours & DH's house as she would be in a care home. Tragically, she'll be confused anywhere

Poor lady

I would tell them the truth, that you were just about coping before but you were at the end of your tether. The lack of mobility and delirium is just too much on top of everything else. You've done five years, there's a limit to what you can do and you've reached it.

⬆️ I'm just reminding you of that in order to reassure you for when the irrational but natural, guilt inevitably appears. Which it will. But stay firm

Noooo do not say that you were coping in any form whatsoever because SS will grab onto that wording that you “were coping" and that will be all they'll hear and will be all they'll write in their paperwork. They won’t listen to ANYTHING beyond those two words. Do. Not. Say this!

If the house is yours and your husbands just say she will not be returning which makes her technically homeless.

You need to continue to be clear she cannot return to your home. If there is a chance she can from your perspective (eg. If delirium is resolved and mobility regained etc) then they may look at somewhere temporarily which she has some rehabilitation. Otherwise you need to be clear that you will only consider residential care. I don't know if you're in a position to start looking at care home options. Some places won't take the council rates so you will need to know your MIL's financial situation first but might be worth starting the ball rolling by taking a look around some places.

The only complication might be if MIL owns your home, and she has capacity to say she wants to return there, or a Best Interests Meeting says it is best for her to go home.

Went through this with my dad who had several periods of delirium during hospital stays. He recovered but it was a slow process and each time his dementia would progress further. It's hard because being in hospital is terrible for people with dementia but that is not an argument for a rushed and unsafe discharge.

Go visit care homes near you. Tomorrow. Today.
Or rather...send her son your dh to see and choose
Insist she goes there
Does she have funds eg sell her house?
Pension?
If she has les than 23500 assets ss pays but you might not have choice over which care facility

You must keep saying no. Hospitals do anything they can to get rid of people and they don't care if it's going to destroy family members, as long as they can tick their boxes and tip people out.

Just say no. You weren't really managing before and she's worse now. You can no longer house her. Let them find other options.

With regard to delirium, it doesn't prevent discharge in itself because it's more likely to persist in hospital. It can take months to clear if it ever does. But it is certainly one of the many factors that make it impossible for you to house her (return to paragraph 1).