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

I am going through something very similar with DF right now. His needs and the history of his care is also book length. The caring is exhausting enough without the endless descriptions of his situation that I have to keep on repeating to new people.

I have reached the same conclusion as you. The fact that DF is now in hospital has given me an opportunity I think to actually push some change. I am also going to refuse to be involved in his discharge unless there is a safe solution. In his case he really needs residential care now.

Before his hospital admission he had carers visiting three times a day funded by SS. This broke down because of his increasing frailty and dementia. I was begging for extra support for about a year and SS would not help. These care visits were great when they started. I got these in place by saying I was going to go back home and leave DF alone. Previously I had moved in with him even though I live 15o miles away and had to take leave from work. As long as I was involved in his care nothing was offered. I had to threaten abandonment. It's awful. Good luck!

Also get contact details for the care package provider before leaving hospital. In some areas it's a real mish mash of small private companies and if no one turns up it's a fucking nightmare trying to work out who is responsible.

I didn't ask permission to record. And when the team refused to sign my notes I made a note of their refusal and listed the names of everyone who refused. They then signed them.

Op you do what you need to do.

P.s- I've just scanned the messages. It seems like your main issue is around medication? Social services in a lot of areas won't go in just for medication prompts (ridiculous i know) and if they do that is all it will be....a prompt. If she refuses they can't make her take it, capacity or not. But this would be the same in a care home. Is this refusal part of her personality or a new thing? If it's new then i would ask if there is an older person psychiatry team who can assess her mental state. There are also telecare options for medication if her problem is forgetting to take them.

Because it can take a week for the Community based team to come and assess. And if you have a non mobile, non continent person living alone or with frail elderly spouse who also has dementia it simply is not possible to wait.

They didn't just suddenly become that way though did they. They didn't one day wake up immobile and incontinent and you decided to bring them to a&e.

I'm not saying all this to be an arse, but bringing them into the hospital puts frail people like that at risk of infections and falls. It also risks worsening their mobility because they spend much more time in bed, and they lose their independence very quickly because of learned helplessness. Deconditioning is a very real and dangerous thing. It also affects them cognitively because there's no stimulation

That's not even to mention how people's operations are cancelled, people seriously ill left on trolleys because of things like this, but that's not the persons fault, just a system that's not designed to cope with social admissions. Thats why we need to try to keep these things in the community as much as possible but I appreciate it's hard.

We get a lot of people dropping them off at Christmas or before theyre going on holiday.

Capacity is fluid. People can have the capacity to make decisions about some things, and not others.
OP have you been able to sit down and explain what behaviours your mum has been displaying prior to her admission that cause concern / put her at risk? Sorry if you've already said this, but is she under the MH team already?
Re: previous posters - the MH crisis team usually only gets involved if there is imminent risk ie someone is threatening suicide.
She would not be eligible for CHC funding, from the info on here.

Sadly there are lots of people out there who really need support, but refuse it, and are within their rights to do so. Sending to the OP.

I didn't ask permission to record. And when the team refused to sign my notes I made a note of their refusal and listed the names of everyone who refused. They then signed them.
Isn't that illegal? You could have also very easily picked up snippets of info from other patients.

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.

the second the person leaves the hospital, leverage is lost for want of a better phrase, and it then promises made don't emerge

So true.

This happened to an ex-client of mine. When she still hadn't been assessed after 6 weeks, I raised a safeguarding.

The poor woman was having to use a commode in her living room, as she couldn't get upstairs and her children (oldest was 12) were having to get her meals.

If your mum is taking tramadol etc like smarties then the gp has a duty of care to either provide medication in smaller amounts so she cannot do this or to oversee her medication through community care. In the end my mums medication had to be locked away from her and the carers coming in had to dispense it to her. When she went into hospice care the nurses there were in charge of it (when I cleared out her drawers at home I found about 7 drawers full of different things she had been stockpiling including boxes and boxes of codeine where she’d walked round to all the local pharmacies and brought it from different places).

OP re the medication thing, our trust provides safes to people like this and only the people administering the medications can access them - maybe that's something to ask about?

It all does depend on capacity though

Prequel- not helpful!! I have been trying to get help for my mother for YEARS!! I haven't just suddenly decided that i cannot cope with my aggressive, paranoid, addisionian mother with osteoporosis diverticulitis and god knows what else because she refuses to see a dr and wont attend drs appointments. We have reached crisis point. She has a penetrating ulcer either coming from bowel to aorta or the other way round - they can't decide. The A&E drs words were "do not leave without a care package" so that is what is going to happen. BECAUSE I DON'T HAVE A CHOICE!!!

OP I was not having a go at you, your situation is different as your mother actually had something warranting bringing her to a&e in the first place. We have many who actually dont and bring them to a&e for access to community services. I'm sorry to have upset you.

Fairy - only yesterday her locum gp provided a morphine patch. After months of lectures from her, not brilliant, gp. Why the fuck wasnt this suggested before - its this sort of thing that only gets adressed in a crisis as she refuses to go to the dr.

Just out of interest, is a regular social worker alone qualified to determine whether someone has mental capacity after a brief chat - or even a half hour one?

After she'd already been in her secure care home for several years and had advanced dementia, my mother was finally 'interviewed' (a joke since she could no longer hold any sort of conversation and had virtually zero understanding) by both a social worker and a psychiatrist.
(My point being that a SW alone was evidently not deemed sufficient.)

This was to establish officially that she lacked capacity to decide where she should live, and did actually need to be in a secure care home.
She died 3 weeks later at 97.

Because most people don’t know what help is available. And this can vary. For example, in Scotland you do not pay for care in your own home. Loads of folk have no contact with Social Services and have no idea how to go about it

It looks like we may need education programmes then, because ignorance shouldn't really be an excuse when information is at our fingertips or can be accessed through the usual 'gatekeeper, the GP.

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!

That comment about abandoning parents comes across very badly soontobe60. TheoriginalLEM refers to being unable to cope and her mother being abusive. Why is explaining to the staff in A&E that she cannot manage and her mother needs to be assessed to see if she is eligible for care support abandoning her?

Most people with support needs manage through a combination of family support and paid support like home care. That is not abandoning people.

TheoriginalLEM - you can get in touch with the hospital PALS service if you feel you need someone to help put your point of view across. As other posters have said, an assessment of your mother’s capacity won’t just be about what events she remembers. If you have been caring for her you have a right to an assessment under the Care Act. The DNR arrangements are normally set in place so staff know what to do if eg she has a cardiac arrest. You can have a DNR even if you are not necessarily at the end of life stage. Think of it being like a will for medical intervention.

Prequelle - thankyou. Im practicing being a rotweiller for when i have to deal with this later. I had to leave my mum in hospital last night with a DNR in place that the dr warned me they would follow.

I do get it - nhs staff are amazing but they don't have resources- i get it. But i cannot allow this to continue. C

I hope you get the help you both need

dr suggests palliative care only my interpretation of this is that the Dr has assessed that your mom isn't strong enough for surgery. The focus of her care is to ensure she has a good quality of life, aiming to ensure she's not in pain on a day to day basis.

There is zero care provided at present, this is partly due to the fact my mum wont accept it.

Im not clear in my head what i want in terms of "care" as she manages to feed herself etc. I do her shopping.

Based upon your update, these are the two statements that stand out and I echo the advice given by @KirstyJC , the hospital discharge team can only set up a standard package of care.

Based upon the limited information you've shared, if you are hoping for your mom to be discharged direct into a care home then I would say it's unlikely this will happen. This will take time to be agreed and put in place.

My advice for now would be to ask for a referral to the adult mental health nurse to assess your mom before she is discharged.

Good luck xx

@GETTINGLIKEMYMOTHER yes a regular social worker is qualified to do a capacity assessment, as is an OT. Capacity is fluid. Someone may have the capacity to make decisions about some things, but not about others. As professionals, they are trained to ask questions that will bring out the appropriate information.

@TheoriginalLEM is it medication that is the main issue? Sorry I'm sure I've missed lots of your posts. If she can wash dress and prepare meals consistently, then in our area, she wouldn't meet the criteria for a care package. Medication can be managed through use of Telecare, the district nurses etc.

Francis you have assumed incorrectly I'm afraid. :( I was lucky enough to have my great nana however it was difficult.

Hospitals are dangerous places for frail people, there is lots and lots of literature on this, they are not the save havens people think they are. social admittances should be avoided. We have seen far too many people's condition decline and/or them pick up hospital acquired infections and it's bloody heart breaking. There's currently quite a large movement on trying to find a way to get these people back to their homes with fast track social, because an inpatient stay can prove so detrimental.