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

Actually, this whole situation, and me not being able to fit together the care that my parents require with my need to earn a salary and take care of my own household and children is badly affecting my mental health. I am seriously considering going off sick... or packing in my job.I have had sleepless nights, overworked weekends and a pounding heart over it for weeks.

I would love to live in a big accessible open plan house with a DH on a salary high enough to meet all our needs, and me swan graciously in to my parents, now living with me, taking them the odd cup of tea and slice of cake and making jolly conversation until my happy children skip in from school, delighted to see their grandparents and sharing inter generational chat about their carefree days while I put a simple but nutritious hot dinner on the table for us all.... in this lovely vision of families taking care of each other.

God, I am so cross!

Incey I actually do have that sort of set up and your scenario was just what we had in mind when FiL came to live with us.

Of course the reality of caring for a very sick elderly person within our broken system is a massive eye opener.

There is a complete lack of real compassion shown, in my experience. Actually the most compassion comes from the lowest paid, the care assistants, who are at the coalface. Everyone else is working towards protecting "their" money and their system, that is their main priority and not the elderly patients, especially not their families. You either need shit loads of money or none at all.

@Soontobe60 Funny but i dont seem to remember seeing you on benefit threads standing up for carers on Carers Allowance when its insinuated that they are scroungers An oversight on your part im sure

i agree with Bazzill.
op, i hope you can get something sorted out soon.
dealing with social services and most NHS staff can be very demoralising, you have to fight for everything. Some ( not all ) HCP's are very quick to judge and empathy free ( bitter experiences in the past)
i can sympathise totally and think that elderly care in the UK is woeful and quite shocking.
incy, i couldnt care for my very old dad as i do not have the room in a house with four adults, but even saying this falls on deaf ears and nobody is very interested unfortunately. Your told to ' go out to work and try to care for older folk as well! cant be done really, not that some people seem to understand this.
the system is broken, its true and wont get any better whilst governments kick the can down the road on all this.

State that it will be ab "unsafe discharge" without an assessment and OT involvement

"Even when they know what the situation is, dad has been discharged late at night with no notification to me or their carer - and on one occasion this meant my incredibly frail dad slept overnight in the shed as he couldn't get in"

Ive seen posts on here about 3am discharges in the past.

"Mum has district nurse visits to do her insulin, but dad has to go to the surgery (2 miles away on his mobility scooter as he can't walk from the disabled parking spaces into the surgery) for ulcer dressings and everything else. Then the nurses have a go at him for leaving mum for a couple of hours to do this"

Sounds like he cant win

You either need shit loads of money or none at all

Or the knowledge to navigate the deliberately and hideously complicated system ... which PPs have spent countless hours sharing with OP over many previous threads

I've the greatest empathy with MN's principle of being a place of support, but in the end there's only so much others can do; the choice of whether to use all that information has quite rightly got to be the OP's

In my experience shit loads of money is of little use when the person lives in a home care blackspot

Hope the multi disciplinary meeting was helpful.

Others have covered some of the practical support that you can ask for.

I hope that you have been able to resolve.

Palliative care isn't just for end of life. It's appropriate for any patient with a life-limiting illness. It's about symptom management.

Some people live for months to years with palliative care. If she's a poor surgical risk, making her comfortable is an appropriate option as there isn't much else they will be able to do for the aneurysm AFAIK, apart from surgery.

I’m hoping that the meeting went well, @TheoriginalLEM, and that you and your mum get the help you need, and a proper care package put in place.

There has been no meeting. They didn't give her her medication this morning
I had to.give it when i realised at 3pm. Waiting on psych assessment

As someone also involved with this sort of desperate faffing around and vulnerable, elderly parents that yo-yo in and out of hospital, one thing is perfectly clear about the children posting on this thread.
You all care deeply about your parent. As for the accusations of dumping and abandonment, they are crap of the most corrosive sort.
Not one of you has walked away, refused to engage with all the various authorities, experts and bureaucrats that pass the buck so swiftly. That would be the simplest solution, to say ‘No, I don’t care ‘ and disengage.
No one has. Well done for sticking with a hideous situation.

There is no way on earth I would agree to be a carer for my mother, not least because she despises me when she has full capacity, never mind if she were to lose the ability to wait until there were no witnesses before unleashing her verbal and physical attacks.

Refusing would be fully keeping with her wishes. She would hate being forced to have me look after her and I have the right to not be assaulted by anybody, least of all somebody who would do it perfectly happily when fully competent, never mind not.

OP, you do NOT have to agree to anything you don't want to do. You are not obliged by law to lift a finger if you do not want to.

The use of the term palliative in this context is that she isn't going to be cured. It's to maintain comfort as much as possible, to reduce distress and pain. Deciding upon a DNR is done when, upon considering all the circumstances, it is felt that it isn't in the patient's best interests to put them through sustained efforts, surgery or other treatments purely in the pursuit of more 'time', especially if it's highly unlikely that the patient would even survive any attempts - They don't do them as a value judgement or to free up beds.

You do not have to cope with the intolerable. You do not have to be seen to be caring for somebody who sounds as though they have been unpleasant for a very long time, irrespective of any diagnoses. You would be perfectly reasonable to say, as is suggested by other here, 'I am not doing this any more' - even the A&E doctor has tried to encourage you to not endure this any further.

Unfortunately, to get the care that she needs until the inevitable happens, you are going to need to refuse to do it yourself. You can't administer medication, deal with attacks, make sure controlled medication isn't being stashed and overdosed and deal with personal care. She needs far more than you could or should be expected to provide and that isn't a failing on your part.

Really don't know what to do now. My mum has been pretty incoherent all day shouting out mummy mummy constantly. I had to come home and i missed the psych assessment. They assesed it as a pain issue. It isn't. Yes she has pain but that is not the issue.

Today i received a letter for my mother to have a home visit by a psychologist from the community mental health team. Didn't receive this until i got home.

Now im thinking i should have brought her home.

My mother is a bloody old bag but she's my mother!! I feel so bad but how can i cope - she was wandering around in her vest and pants.

Am considering making complaint about not getting her medication.

I'm just speaking from my area, but from both a professional and personal point of view the mental health team were a load of shite and unless you're actively going to chop your own head off they cant help with anything.

The medication thing, please do complain! Us nurses are always always getting the brunt from families about their loved ones not getting meds. The issue is (in most hospitals I've worked in but I'm sure others are better) that once patients come in, if they come in out of hours that means they then have to wait for a pharmacy tech (who only work 9-5 in a bloody 24/7 service) to come and do what we call a medication reconciliation. They find out what medications the patient is on, and make a list. It's confirmed by contacting GP or looking on this database thing. But then it's waiting for a doctor to prescribe it, and if theyve finished the ward round and are now busy with patients, doing discharges etc it can take forever getting things prescribed. Meanwhile people like your mum are waiting. And then we can only give it if we have got it, we order the medication if we don't stock it but that can take hours to come from the pharmacy. It's a nightmare- hopefully complaints would mean change!

Don't take her home, she's there now and now they know what is going on with her they cant just let her go home with no support. It will take time, but I'm sure it will be worth it. I'm So sorry you're having to deal.with this

Op was the delayed medication steroids for her Addison’s disease? I am only asking because I remember your previous threads about it and I have Addison’s disease myself so I know they are time dependent and hospitals don’t always fully understand that part of it. There’s a fab closed group on Facebook- UK Addison’s Disease support group - www.facebook.com/groups/175948922471395/?ref=share

They can provide you with help re your mums condition and care and also provide links to written information about timing of meds which can be given to hospital staff.

@Meandmetoo. Im horrified by what you went through and the blatant gaslighting you had to endure.

The worst thing you could do is bring her home.

If they see her like this, they will have to treat her appropriately and arrange for the care she actually needs, rather than assume a couple of painkillers/morphine patches and you'll be fine.

You can do what you need to do. She might be your mother, but that doesn't mean it's all your responsibility - sounds like she's beyond that. Sticking your heels in and refusing is the best chance you have of getting her what she needs, rather than taking it all on yourself.

LEM it sounds absolutely horrendous.

Look after yourself, as well as trying to sort your mum. You can only help her if you are strong and well too .

I cared for my grandmother, and my family were a PITA interfering and sending carers/Doctors away etc so in the end, I rang SS and had her assessed that way. It made life so much easier as it was the social worker pulling the strings/making decisions, and not me. The social worker saved my sanity and made sure my gran got the dignity she deserved.

Op i say this as someone who works in care if you take your mum home you will struggle even longer to get the care on as they will consider you as her carer. Social care is an absolute mess at the moment , no money and councils are stretched to the limit which makes it completely unfair on people like yourself and your mum .You need to stick to your guns and say you cannot be your mum's carer i know it sounds harsh but your mum sounds as if she really needs close supervision due the dementia that is too much to expect of you .She should have a social worker and an OT assessment to assess the best place for your mum to bed.If it is deemed she is unsafe ie danger to herself then she should have a DOL's assessment by two drs ( deprevation of liberty ) if say she needs go for example to nursing home where they have separate units where people can't just wander off outside .I haven't read the whole thread so apologise if this has already been mentioned.Good luck .

Soontobe60 have you had experience of caring with someone with dementia ? Your post made me .Do know how demanding it can be and actually dangerous it can be , ie opening door and wandering into traffic or turning on the gas for example .I have worked in care for 25yrs and i know incidents where this has actually happened when the families were trying their best .I would never ever judge a family who said they could not cope with a relative with dementia .I think you need educate yourself more on the facts before you judge .

I can absolutely understand how you are feeling, @TheoriginalLEM, but @Hearthside is right - if you refuse to take your mum home, and out your foot down, they will have more incentive to get her the care package that she needs - and that you need her to have, for your own sanity.

{{{hugs}}}