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!

The bottom line is she would not be safe -- you absolutely cannot guarantee you would be able to keep her safe.
That's your assessment, you're unwilling to take this huge risk and I don't see how they could argue with it.
And if you say X they will counter with Y.
You have the right to refuse to house her.

Wishing you all the best. It's awful but you will have to be very firm.

There may be issues with skin breakdown if she has to wear same pad all night so that could be safety issue, but it is not really about her safety.
If she is living in your home, not her own, and you say you are not willing to have her there, that should be enough for Social Services to look at alternatives. They cannot force you to look after her. I would suggest keeping it as simple as that.

She's unsafe because you cannot mobilise her or provide the care she needs

I think @SiobhanSharpe has brought up a very important other issue re : what happens if there’s a fire.
Would you and dh be able to carry her out.

It’s not like you will have fire doors all over your property like in care homes.

we’ve now been asked to a meeting with discharge team tomorrow so that will be interesting.
Ive just studied the framework for continuing healthcare and my scoring got her over the threshold to at least be assessed for it.

Hospital bed rails are not often provided for home anymore for people with dementia as they are at risk of getting confused and climbing over the top which is more dangerous. They prefer to provide beds that go low to the ground so if someone does fall out they don't fall far. But if someone is confused because of dementia or delirium then their chance of forgetting they can't stand is very high and means they are more likely to try and fall. She's already got a fracture from a fall so why risk another.

If asked, I would focus on the fact that in an emergency she cannot recognise danger or respond. If there was a fire she wouldn't be able to recognise the smoke alarm and use a phone to call for help. Same if there was a flood or intruder, or if she were to fall at night. The main thing that will determine if someone can be managed with carers or need care home will be overnight needs. Is she going to the toilet overnight, need pad changes, turning due to pressure damage risk etc.

There are lots of people that live alone with carers 4 times a day and are immobile completely overnight. But they will most likely have the ability to recognise danger and call for help independently.

She needs more personal care than can possibly be delivered in 4 x 15 minute visits, and you will not be providing any of it. Therefore she’s at risk of malnutrition, infection and pressure sores at the very least.

And everything Wrongside said.

OP you just look at this differently. You can’t ‘win’ this one with reasons and logic.

Their aim is to get you to continue care so they don’t have to manage and pay for this. It does not matter to them that this is not the best option. They already know that.

You need stock phrases, which you keep repeating.

‘We as a family have decided we are no longer in a position to provide this level of care for many personal reasons. It’s been a hard decision but one we have entirely thought out. We will not be able to do this.’

’So what has changed, why have you made this decision, what do you think will make it too difficult?’

’Im sorry but we are not prepared to have this very difficult decision for our family questioned or discussed further, it will simply be distressing but not change the decision. We have decided as a family that we can no longer provide safe care for many complex and personal reasons so I’d rather move on to discussing what happens now’

but but…

’Im sorry but this isn’t appropriate. We’ve already clarified that we’ve discussed fully as a family changes in all our circumstances and agree that we will no longer be able to provide care. This is for many personal reasons and has been a difficult decisions and I’m not prepared to discuss it further nor do I have any obligation to.’

but but…

’Would it be more appropriate to continue this meeting by email?’

etc

I would focus on her lack of mobility and how you would cope with her incontinence or prevention of bed sores. Getting her bedding changed or getting her dressed. What happens if you go out or are they expecting you to stay in and provide 24 hour care? In an emergency evacuation situation that would be problematic. Helping her with bathing etc although they will probably send in carers a few times a day, it is a nightmare. I think I would emphasise that you and your husbands own mental health is suffering.

Excellent advice from TheCultureHusks.

Give them nothing to work with - the least you say the better. Culture has given you the polite way of saying NO, No, No.

THIS in spades

You do not give them an in to try and persuade you to change your mind.
Be like a broken record and just keep repeating that you are unable to take her home. They will hone in on anything you say that they can twist to make it look like you can bring her home.

The other angle you might face is the ‘computer says no’ bully approach. Where they talk as if the discharge IS going to happen and oh dear well it looks as if we are going to have to discuss this further, we completely understand your position, so on Wednesday when she is discharged we will meet again a couple of days later at home with her and you and discuss care options…

basically trying ANY steamroller technique to just get her through your door.

If so you reply -

‘Let me stop you there - so you are saying that you plan to do an unsafe discharge which we consider a safeguarding risk? Ok, would you be able to let me know what we should do to respond to this if it happens? Is it best to refuse the ambulance directly, or to allow them to drop her off and we take her straight to A&E? Also could you let me know the complaints procedure for this, as I will of course start that straight away’

@Weaktea ask the team to do a 24/48 hr needs assessment, with particular emphasis on her overnight needs as there will be no carers then. They need to record how often they turn how, how many staff it takes, how often they go to reassure her eg at 2 in the morning even if they don't do anything physical and when she needs pain killers. Then when it shows she needs input that isn't covered by a four times a day care package, the social services will have the evidence they need to look at placement if you stick to your guns that you can't and won't meet her needs.

Social services have to always consider "home first" which is difficult when there has been no formal maximum of care provided previously.....and that is why previous posters are encouraging carers / families not to wait until crisis point before they ask/push for formal support.....often need to play the long game

I'm very surprised indeed that they are talking about a bed with rails/sides for someone with dementia (a risk factor being that they forget that they can't stand, try to get out of bed and the sides can be dangerous)

OP, please stand firm. The issues with provision of care at point of discharge and NHS beds being taken up because of this are very real, but not yours to solve. Your duty is to your MIL and yourselves and it doesn't sound like a return home is going to be workable or safe. Her complex combination of issues including dementia/stage 4 cancer and an injury mean that any providable care package is unlikely to meet her needs IMHO and a request for nursing home is reasonable.

I'm saying this as someone giving 24/7 care for a bed bound person. All situations are different and sometimes care at home is not the best option for anyone.

I can assure you in my ward we would not be discharging with a delirium that had presented whilst an inpatient.

YOU won't be safe.

SHE won't be safe because YOU have burned out over the X period you have cared for her and can no longer do so.

Agreed about the bed sides, though tbh they have put them on now for my mum as she's not even rolling over unassisted, so I guess it does happen.

Agree also to say how distressing it is to keep being pressed to alter this decision which is that you can no longer safely care for your beloved MIL.

Very helpful this !

This happened with my mum
My dad had been asking for help for months and then mum fell. I told him not to pick her up, and ring an ambulance, this was the crisis he needed
They took her in, dad then refused to have her home (this he really struggled with)
I got him to say nothing except "this would be an unsafe discharge, she can't come home"

She went into an assessment unit at hospital and then was discharged to a care home

It is heart breaking to say this but the only way.

You can get out of a sided hospital bed. They know that.

It's quite common for very frail patients with dementia to go over the top of the rails. The result is usually a broken hip or worse.

My mum refused to stand for the OT but would get up at other times. Again, this is not unusual.

Just to add that they do try to railroad.

I went in to visit my husband one day. Nurse: "Oh, we've had a discussion with DH and we've agreed that you'll make up a pillbox with his medication each day."

I was just in from work and afterwards was heading back to my mum's house to stay with her overnight. (She had dementia. We'd just finished building on accommodation for her, but hadn't done the move yet.)

I exploded: "Oh, that's something else I've to do? When were you going to discuss it with me?"

"Well, if you're unwilling, it might be possible to get a NOMAD box." [That's when the pharmacist makes up a box - they have different names elsewhere.]

"I'm willing to make it up. I'm angry that you didn't ask me. What kind of box do I need to purchase?"

"Oh, we're not allowed to make recommendations..." [Bull.]

When he got home, the pill box didn't work. He couldn't get into the lunchtime section. I told them they'd have to organise a carer for lunchtime. (They'd initially told me he'd get care 4 times a day. Head of the care team took one look at me and cut it back to once a day...and then none.)

Spookily, they were then able to provide a wondrous contraption with lights and alarms which went round in a carousel and allowed the patient to get the meds without having to delve into the container. Pivotell makes them.

Another time, I got to the hospital and it was "Right. So if you drive the car to the door here, we're going to practise transfers."

"Really? Why was I not told? The car is full of items from my mother's house that I've just picked up to take to our place. What if I'd had the van instead of the car?"

I think I was seen as being "difficult", even though I then moved the boxes from the passenger seat to the rear of the car.

Thanks @TheCultureHusks ! That’s brilliant and really helpful.

Sorry, the sided bed is just my own assumption. They’ve mentioned hospital bed and I’d just assumed it would be like the one she is in on the ward. Irrelevant though really!

It's probably too late for your meeting tomorrow but I've found it helpful to ask for the meetings to be on Zoom or Teams rather than in person. I have to because I work FT and the hospital isn't local but it has other advantages.

It adds more to the picture of you've got Other Things going on in your life.

It's very easy to record and you can also ask for clarifications to be spelt out in the chat ie you've got stuff in writing.

It's just easier to deal with - you control the environment you're sitting in, you're not surrounded by them in a room. If it gets overwhelming or too difficult have a "connection problem" and leave for a couple of minutes.

It's easy to double check what you're being told as you can Google at the same time.

The hospital bed probably will have sides, though they don't have to be up. If it's like the one that they insisted on for my mum, it'll be the kind that raises the patient, etc, has a wipe clean mattress.

They also take up a helluva lot of space.