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

Aortic aneurysms can rupture at any time and surviving a rupture is very rare, so that would be the thought behind DNR.
Do not live in UK so can’t help with the rest, sorry.

Does your mum have a social worker involved with her at all?

Palliative care doesn’t mean giving up. It means more emphasis on balancing the strain on the patient with the potential benefit of the treatment. My mom had a year of palliative care. She did chemo for most of that time.

I don't know what questions you should be asking but didn't want to read and run,

My sister also refused to let our dad leave hospital without a care package in place after a crisis, he lived on his own 200 miles from where she lives. I live overseas so wasn't involved but I know she had to get pretty shitty and basically refuse to accept responsibility for his discharge - not a nice position to be in. It it doesn't sound like you have any other option but to do the same. Best of luck xx

Wee nurse - the DNR was already in place, it was more the mention of palliative care that threw me. I associate that with terminal illnesses. But then a ruptured aneurysm is pretty terminal i guess.

No social worker as yet. Ive been trying to get her help for ages but she will not engage yet have always been informed that whilst she has capacity then she can refuse help. I don't believe she has capacity yet she can recall the dates of ww2 so... not quite, but you get the picture.

Palliative care should mean she gets the care needed to manage any symptoms and make her as comfortable as possible, it doesn't mean the end is imminent, it isn't just for end of life care but it should provide a holistic package of care for her and support for you.

There should be a social worker based in the hospital or contact your local adult social services. Inform them your mother is in hospital and is fit for discharge, but that you will not accept her home without and care plan in place. Don't allow her to leave the hospital until she's had a social work assessment and you've met the social worker who has done the assessment and ensured your views have been taken on board too. Yes it puts a strain on the NHS (and so can be deemed unreasonable) - but both you and your mum have paid years of taxes- and if you bring her home then the strain will be on you until social services get someone out to see you and they have large waiting lists! Does she have over 23k in savings? In which case it's likely any care will be paid for by her. If she has dementia - hopefully you have financial POA so you can access her finances. If she has less than that then the council should pay but she will be assessed for her financial contribution. I hope it goes well for you and your mum.

Also mental capacity is decision specific. Ie: your mother can have the mental capacity to make the decision about whether she wants to eat a ham or egg sandwich for lunch. But she may not have the mental capacity to make the decision about where she gets to live following discharge especially if she lacks insight into her own safety and so could be at risk. A social worker will do the appropriate capacity assessment with regards to care decisions. Obviously the health professionals will do the ones with regards to her health needs.

She needs an OT/physio review in hospital and they will assess how capable she is of actually looking after herself. The nursing staff will most likely be getting that organised in the background. I would try to have a conversation with the doctors and explain that she thinks she is capable but you are all really struggling, make it very clear to them that you are not able to care for her.
Depending on the trust palliative care can mean quite different things. Conditions like your mums have don't have a steady decline (like cancer would where she would become weaker as the disease progressed). She may be ok unless there is a rupture and then she would pass very quickly. So I'd imagine by palliative they just mean that she is not eligible for any treatment that would reverse her condition, not necessarily that she is actively dying. So they are moving on from focusing on treatment to a focus on quality of life and managing symptoms as they occur. Important to have that conversation with the docs/nurses too..I haven't seen her notes so cant be sure.

Thankyou Vehivle - that is very informative. I think I'll call social services tomorrow as well as relying on seeing the hospital social worker.

I feel bad about leaving her there as A&E were stretched to breaking point tonight and last night so the thought of adding to that doesn't sit well with me. I know they are in for a difficult night with her. I am just at the end of my rope.

Jent - thankyou. She has several co- morbidities that i believe lead the vascular team to decide that intervention isn't appropriate.

Shes an 83 year cantankerous old cow but im not ready for her to die just yet. However she has a panatrating ulcer eating into her aorta so i cannot imagine she has long :(

You have a legitimate reason to be there, as set out by whatever system you've mentioned and which has been suggested by PP. I know she's not got her leg hanging off and I've been treated in a corridor and it's awful but that's not yours or her fault. One of the patients in front of me in that corridor was a very distressed old woman who probably had dementia, she had fallen at the care home. There was even a staff change during the long wait and the relief needed relieving; the poor woman was repeatedly weakly (but still loudly enough) shouting "help.... Help...." and never mind the disruption, it was heart breaking. She was eventually in the a&e ward when I was (wrongly due to lack of staff) discharged by the dawn of the next day. They had struggled to find somewhere to put her because of the noise she was making, apparently.

This case and your own case are why I was so upset when I accidentally flicked on to that parliament channel (I'm not a terrestrial TV person, sorry) and they were debating local govt and social care and there weren't more than about eight people there in parliament. Even the Tories were saying there wasn't enough support in the blue belt round London, for aid to the elderly and those with dementia related issues. Makes my blood boil.

Stay where you are til you get her what she and you need. You need the help and deserve help. Stay strong.

Your mother sounds very much like mine. I’d echo Vehivle’s advice. My mother was discharged from hospital with an odd kind of half-promise of a care package and it was difficult to get things in place after she was home. Be firm in saying you want a clear plan before she leaves hospital.

Mum discharged from hospital recently and it was difficult. 87 and lives alone, no services.
Hospital tried to lump everything on to me. I then explained I live 9 hours drive away.
Social worker was then, ‘well what about other family?’
Explained nearest brother lives 45 minutes away and also cares for 90 year old MIL and elderly aunt and uncle. Other brothers live 1-2 hours away.
Finally got approved for interim care package. We now have to request further care going forward.
Not easy. Do not leave hospital without something in place.

You did the right thing refusing to take her home. I'm in Australia, so probably a little different, but had a similar situation with my dad. Taken to emergency and mum refused to take him home without assessment. That started a panic akin to yours until they found him a spot in a mental health ward (he has dementia too). He was there 5 weeks while they assessed him, assessed his medication and got a medication plan that worked. In that time I'd spoken to his social worker and said I didn't want him going home as he was violent. She agreed with me and recommended unless there was more than one adult at home, he had to go to a care facility. He was placed very quickly into a government run facility, which I actually really like. It was the best outcome in the situation.

OP I’m sorry you are going through this, but don’t feel guilt towards the A&E staff, it’s the systems we have in place that force you to take these measures.

There are a few things you need to establish first...
Does your mother have capacity? And if not do you have welfare power of attorney. If she still has capacity then the decision isn't actually yours to make and if she decides she's going home without a package of care then that is her decision to make. If she doesn't have capacity and you don't have power of attorney it is still difficult for you to make decisions on her behalf.

Not all hospitals have a social work department that will assess her before discharge home, the one I work on doesn't. You need to ask for an OT functional assessment who will assess what she can and can't do for herself. They will then recommend what level of care she needs. A SW would unlikely be able to complete their assessment without that info.

Ask for a referral for carers support. There is a huge number of informal carers in the country that keep people at home, it's a full time stressful job and most have lots of other commitments on top of it. It's no wonder people struggle.

Good luck, hope you get some things sorted... Its not an easy position to be in.

Different health conditions but we had to abandon my DGF in hospital because SS don't help if there is a relative to fob things off to. It didn't feel great but it was necessary to get something sorted for him.

Do you have Power of attorney

The other important thing when they try to get you involved in providing some of the car say “I can’t do that” make them put in a care package that doesn’t involve you (in a physically doing way) as if you give a hint of being able to then that will be used as a way provide less care.

My mum and uncle had to refuse to help with my gran - hospital wanted to send her home with carers coming in but there was no way that would have been enough. It was horrible for them but they just kept saying they didn’t believe it would be enough and they would not be helping. Eventually she had dementia assessments and was deemed not to have capacity so she was moved into a care home. It took a long time tho. Good luck

OP, why was your mum admitted to a&e in the first place? Did she have a care package before she was admitted? Or did she live with you? The illnesses you have described would not automatically mean she needs to be in hospital. If she lived alone, and was capable of taking care of herself, what has changed now?
Dependent on the circumstances, she should either stay in hospital until a care package is organised but only if she would be unable to take care of herself if she were to return home. Or she should go home and not block medical beds.

I echo she need an OT/physio review. They can assess her needs, work out the best option for her and inform the discharge team, who can liaise with social services and help get things in place ready for discharge. She may need a mental capacity assessment and best interests/family meeting if she is deemed not to have capacity.

How things work does vary quite significantly county to county and hospital to hospital though. The hospital I work in covers two counties and one has a much better system for discharging patients in circumstances like this than the other.

Also, it's very sad the number of people on here who think it's ok to abandon their parents in hospital because it's challenging looking after them. One day, you may be in the same position. I wonder how you would feel if your children did the same to you?
What happened to family supporting each other?

My DGF lived 100s of miles away from his family and would have found being fed, dressed and bathed by family members humiliating. What would you suggest as a better option?