Mother in hospital AIBU to refuse to take her home without a care package

[TheoriginalLEM]

Well i know im not BU.

We are at crisis point and despite A&E dr initially wanting to discharge, my refusal to accept prompted a frank discussion and he basically told me "do not walk out of her without a care plan"

So how do i make this happen? What do i ask for? A&E dr has put her down for a multidisciplinary discharge team - he did call it something but im sleep deprived and i cant think straight. This apparently involves social services.

My mum is difficult. This is categorically the understatement of the century.

Her issues are complex and compounded by mental health issues and possible dementia.

Crisis = acute aortic aneurysm with blood clots. Panicking vascular surgeons readmitting to A&E with ensuing chaos, lack of communication and now "an excuse to get a care package in place"

There isa DNR in place and dr suggests palliative care only - im a little wtf about that. She was helping me do her garden at the weekend, in a rare window of lucidity.

My mother is abusive which makes caring for her almost intolerable.

I can no longer cope.

What q should i be asking

nursebuttercup my understanding is that they have to sort of go through stages, so offer 2 daily visits, then 3 daily visits etc before they'll even consider a 24 hour setting - is this true? Might be helpful for OP to know

You mentioned you've tried social workers have you tried reaching out to your local IMCA team? They can advocate on her behalf an you might find it's a good stepping stone for assessing capacity they will also argue for the best care plans on your behalf too!

@TheoriginalLEM just read through. You say she is a danger to herself. Can you explain why (I'm not implying she's not, it's just more info would be helpful re giving advice)?
Has she been referred to the memory clinic if dementia is suspected? That can also cause paranoia and delusions.

if yiu have never had any contact with social,services, you do not know what services the offer
That doesn't wash though does it, because if people bring them to hospital wanting the hospital to sort the services then they must know the services exist.

Mumsnet is funny at times. There's one thread were a pregnant woman is getting bashed because she dared said she wasn't given enough information and didn't feel supported, the typical answers being she shouldn't need to be spoon fed it and that adults should be capable of researching themselves- yet here we are pretending adults are useless and incapable of picking up a phone or doing a search on the internet.

Anyway not going to debate about it any longer OP needs support not reading this rubbish (from myself too)

@bubblegumunicorn if she has been assessed as having capacity, the IMCA team won't get involved.

Francis I've just checked and it's the case in my area unless there's been a substantial change as in acute injury. Glad to hear areas differ

@Prequelle, sometimes it can be a very sudden deterioration that leads to increased care needs like in the case of a stroke or the carer becoming to ill to help. Sometimes it's because the person is only in phone contact with family and plays down their condition.

Thankyou everyone - my head is spinning. I don't know what to expect from todat.

I don't want her in a home. That would be a disaster. Just getting her the help she needs as right now her quality of life is zero

"Legal wouldn't have allowed us to sign anything a patients family decided we do but we are a bigger trust so that might be why."

So op I would absolutely suggest recording it on your phone.

But,it was just signing notes of a record of the meeting, not us deciding anything, just a factual record of the meeting. My trust is one of the largest in the country.

"Isn't that illegal? You could have also very easily picked up snippets of info from other patients. "

And personally I didn't give two shiney poos if it was illegal. No info was picked up as it was in a meeting room.

OP have you managed to write down any questions you want to ask? It might be easier for you when you're so stressed to help you get your thoughts in order.

francis I would love to continue to have this discussion with you, but as I have already said multiple posts (of yours) ago, it's not fair on OP.

Nowhere have I posted inaccurate info as facts. Stop talking out of your arse because you know I don't want to further derail the thread.

Sorry again OP.

Given she has just started a morphine patch, I'd make my previous suggestion even stronger.

She needs to see the hospital palliative care team. This sort of thing is their bread and butter day to day work - sorting out frail people's symptoms, helping them be where they want to be and getting care packages in place, plus supporting stressed out relatives.

Op try speaking to the Alzheimer's society. They were so helpful and a worker was assigned to us who helped us write some kick ass letters and came to meetings with us. Funny how the tone changed when he was there advocating for us and my dad. We succeeded in getting my dad the care WE wanted for him, not ss who were offering a paltry 2 visits a day (he's not self funding so costs innit ) and not the hospital who decided to discharge him without our knowledge, resulting in us having to turn up at the hospital literally blocking the ambulance from leaving with him. It was heartbreaking.

Incidentally they said we'd agreed to have him home, I played the recording of the meetings for them and showed them the notes they'd signed where we categorically hadn't agreed he could come home. They then backtracked and said it was an admin error. I can't stress this enough, you need a record of every meeting.

Go on the community message board on the Alzheimer's society website. Hundreds of similar stories. Record every meeting and don't back down.

You say a home is not the answer but given all you have said it might be best for all, I felt the same with dm until there was no choice, was best thing we could do, record everything by minuting or recording we found it changed the attitudes of ss and doctors. Make sure they are looking at whole picture in hospital they will look at urgent issue eg what admitted for only unless you push them to look as a whole

My area is very good because we have a single number that is basically for everything. Need a social worker? They'll get you through. Need a treatment room referal? You'll get the right place. Need physio? Same number. It's really good and I wish more places had it!

We have this in our area, it's a load of shite. Faceless, nameless people on the other end of a phone, lying and denying. We're two years in and no further on, I've actually gone past the breakdown stage, now I'm just numb. My greatest wish for all the professionals involved is that they, and their families, live very long lives.

And we did this without poa, don't let them say that is a problem if you don't have it in place.

OP I'm sorry that you are going through this and I have some sympathy with you as I could have written your post last weekend as DM was rushed to hospital with a head injury.

It's knowing what to ask for and when to object or question the suggestions. For me it was and is lots of jargon and a variety of people involved with it which isn't clear.

At the moment DM is back home with carers 3 times a day but I discovered they don't cook food apart from tea and toast and that includes a microwave meal, they don't assist in toilet needs-mine just needs help standing up and they didn't dress DM yesterday which I thought was part of the plan. I still went in twice yesterday to assist and have a large shopping list for later today. This is for 4-10 weeks as a transitional arrangement until something more permanent is put in place.

I'm so stressed with it all including the night falls and distress calls over the last 3 months that I got signed off from work and am taking sometime for myself. I'm happy to share my experiences if you want to PM me