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

Running out the door so will try and be quick. Apologies for typos

Have just had a similar situation with my grandmother. My mum (semi retired) is her primary carer, but GMs previously undiagnosed mental health issues had made it impossible for mum and I, neither of whom have any medical or MH knowledge, to manage her needs, especially with inacreasing violent and verbally abusive outbursts.

She was admitted to hospital after trying (almost very successfully) to starve herself, and was in for about a week. Drs were ready to discharge with no care plan in place, obviously at this stage we are at our wits end.

Friend of mine who works in MH advised me to use the term ‘we can’t cope’ with her drs, and stress that we were no longer prepared to take ANY further responsibility for her Care at all.

Of course, never going to happen that you’ll walk away and not play any part, but by insinuating that we would, the care team had to become involved and a MH nurse was deployed twice a day to her home etc etc. She was back in hospital within a week, and sectioned two weeks later, remaining in a facility for five months.

Hardest thing we ever had to say, but ultimately we couldn’t have managed her needs at that level.

(She’s coping much better now, and at home)

@soontobe60

Oh, do keep your mouth shut ‘cos you are talking absolute rubbish. I guarantee you that you wouldn’t be able to do the job 24hrs that I do for 7hrs a day during my shift at a dementia care home😡

As much as I love my job it’s s relief to go home some days to get a rest from it all, knowing that somebody else will just take over from me and carry on with the residents’ care.

Sending much love your way Lem

• Ask for a social worker to be involved in discharge and be brutally honest- you cannot look after her.
• Ask for a health assessment to determine what degree her needs are health based. These are referred to as DST assessments.
• It sounds like the CPN felt she did not meet their criteria, ask them to assess again emphasise the disengagement with meds the lack of self care which puts her at risk of further harm.
• Be clear to professionals about your own issues and the relationship with your mum.
• Clearly say that she is at risk of harm and unable to look after herself. Use phrases such as 'unsafe discharge'.

She sounds like a nightmare Lem, but you need her to be safe and looked after. I'm sending you good vibes this morning. PM me if you need to.

Hi op. I've been where you are. Just wanted to add don't panic about the word palliative. My dad has been considered palliative for 3 years.

You've done the right thing not leaving until the care is tied down. Your mum might be eligible for continuing healthcare if her needs reach a certain level. Continuing healthcare could fund a nursing home or live in carer. If you google continuing healthcare you can look at the criteria. It covers health needs and emotional/behaviour etc.

Soontobe60 It's not ideal but most people have full-time work and other commitments, or aren't living nearby.
You can't expect someone to quit their job, relocate 100s of miles etc. It's not practical when you have a house to keep over your head and kids to look after.
The people I know who have been able to have their elderly parents living with them until the end seem to have money and are child-free...

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

Yep this is my dad. He could have a conversation about politics but refused to use any walking aids so was having repeated falls at home.

If you’ve been told she needs palliative care, then she should have been referred to the specialist palliative care team. They are well placed to set up rapid discharge plans to get her home with care arranged. The standard is usually 24 or 48 hours depending on which trust it is.

Insist on the SPCT referral.

She shouldn’t still be in the emergency department. The four hour breach remains a performance indicator for most trusts. She assuredly has been moved to the care of the medical team. Emergency department doctors aren’t best placed to deal with longer term issues.

Dad still comes across as sharp when you're talking about current affairs but then he'll say 'I don't need to be here, I can live alone, get me a taxi' He's bed bound and needs help with everything. It's awful because he makes me feel like I'm stopping him being independent when in reality there is no way he can be independent. He struggles to move about on the bed. It just shows that he can talk the talk but in terms of self care he has poor awareness of his limitations.

I work 10 hour days and have a teenage dd. I cannot afford to reduce hours. My dp is self employed and we are losing £££'s with the amount of time hes having to take off.

Irsnot day to day care she needs. Its psychiatric care and ensuring she takes her meds. She refuses to see a dr and i cannot "self medicate" im not a dr but she expects me to be.

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

This can't continue. You can't let her needs screw up your life. You have to keep banging on about how you can no longer meet her needs. My dad's medication was a factor when they arranged a live in carer as he had been taking codeine like smarties and on all sorts of other things for his heart.

We had to bed block with my dad, took weeks. Just monotone "no, she cannot come home there is no one to look after her and keep her safe". Repeat X 1000

You're in the middle, social services won't want to pay for care, hospital want her out. But they cannot discharge into an unsafe environment, which it will be without adequate care which you cannot provide (I assume)

Please ignore emotional posts from people suggesting you need to care for her. It's unrealistic and not helpful. She needs proper care.

Some fantastic advice on here. Thankyou.

I actually understand where soontobe60 is coming from but without writing war and peace i couldn't even start to address the complexity of my mother's medical situation. Most A&E drs openly admit to being out of their depth. So its not surprising some posters might think its simple!!

Its not about abandoning my mother. Its about me not being able to provide what she needs. I can shop for her etc but sort her medication?? Err not my job.

I also know how stretched a&e are but as pp have said. The minute i take her home shes on her own. So this option is not really an option is it

Headinhands she pops tramadol and paracetamol like smarties.

Psychiatric care IS day to day care.

No one can look after themselves safely if they do not have good mental capacity. She might not need someone to help her on and off a toilet but if she’s not medicating herself correctly or making other unsafe choices she needs a team of people supporting her as a bare minimum.

And record discussions on your phone or take comprehensive notes and have everyone review and sign them. I had to refer to a number of them when the team started saying we had agreed to 2 care visits a day, when we actually said care in the home wasn't an option, for many reasons.

Well I work in palliative care and I'd absolutely say she merits being seen by the hospital palliative care team.

Also, by what you say, I'm not sure she has capacity to make decisions about care.

I see a lot of people with dementia who are deemed to have capacity when a frontline person has had a brief chat with them - 'Oh, they seem OK, they know what they want' - but when you have an in depth assessment they reveal a total absence of understanding of risk, retention of information and weighing up of options.

Statements such as 'yes, I'll be alright having a bath' and then you discover the house doesn't even have a bath, or 'my daughter will do it' and the daughter died in 1975 or lives in Australia. That sort of thing.

Usually we admit people under 'not coping at home', this is where we keep them in whilst social assessments are done like physio and OT so a POC can be put in place

I do wonder though why people needed the hospital to do it for them and take up a hospital bed when it can all be done in the community, but that's neither here nor there when the person is in front of you we cant just leave them and send them on their way if they need help

Ignore those trying to make you feel like shit. Some patients me and my team struggle with and end up at the end of our tether with, I couldn't imagine being the sole 24/7 carer for them like some families are! There's a reason people need training and breaks.

We had this recently.

I discovered that if they are discharged from A&E they are not Jc suffered to have been in hospital at all. And you can’t automatically be seen for a care package until the patient has been admitted for a min of 24 hours. I was in the ward refusing to take home a relative who was not independently mobile and not continent until they provided a care package. It took them 5 days to put in place but so be it: as a family we do our best but we have to keep our jobs to house and feed our kids.

Once the package was in place it was good, and has led to further assessment and support.

I work in health care. I'm an OT and I have a special interest in assessing capacity.
Can i ask what makes you think she lacks capacity?
Can i also ask how she has changed recently and what help you specifically envisage gaining from a care package? Is she doing risky things? Is she unable to or forgetting to wash and dress?
Happy for you to PM me if you want more advice x

meandmetoo in my trust we are not allowed to be recorded and I would not be signing something that a patient had decided I need to sign, so OP may not have that option.

Prequelle, because the second the person leaves the hospital, leverage is lost for want of a better phrase, and it then promises made don't emerge. This is a fact in some areas.

After my, and several others experiences, id always advise someone to never allow a loved one to leave hospital without a signed sealed and delivered care package.

“I do wonder though why people needed the hospital to do it for them and take up a hospital bed when it can all be done in the community, “

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.