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

It’s not about abandoning them. It’s about getting proper support in place for them and the whole family. The needs of everyone have to be considered.

It isn’t as simple as just dropping everything and becoming carer.

Soontobe no need to guilt trip OP. She has been caring for her mum, and sorting stuff out for her, despite her mother being very difficult.

It's not always possible for families to look after the elderly to the extent required. Many children of elderly people have other responsibilities like full-time work, children, their own medical issues, etc. It's not as though the government offers a carer's allowance that in any way replaces a wage. It is quite right and proper that social services/OT should be assessing need before OP's mum is discharged. It's not her fault if that means a bed is blocked. That is a systemic issue caused by the government, ultimately. No way should the OP or her mum (or anyone in a similar situation) take the fall for their incompetence. Lay off her.

OP - stick to your guns. You are doing your best for your mum in doing so.

You can also insist on your own carer’s assessment - this should look at your needs around having your Mum at home. As everyone is saying you are absolutely right to insist on a full care act assessment for both of you and a package of care. You will then need to be very firm with the community team about the fact they need to re-asses when you are home. In my work
role I have had to advise providers to evict people to prevent them being discharged with inadequate care in place. I am sorry you are in this position - underfunding is crippling the system. Good luck, you sound like a really caring daughter despite all the difficulties- your Mum is lucky to have you.

@Soontobe did you miss the part where the op said her mum was abusive? Why on earth should op have to accommodate someone like that, mother or not?

My mum died 4 weeks ago aged 70 after a very similar story. She was also abusive - she was actually blacklisted by the ambulance service after she swore at them and shouted at them.

Anyway, op you’ve had some great advice. I really had to keep pushing for care for my mum. I rang the palliative team constantly, rang local hospices and spoke the nurses in charge to get her assessed to get her a place at one of them - that’s what happened in the end, they send the continuing care team out to assess her and found her a place at one of them.

Also, ring the gp and let them know what’s going on. They can get involved in her care. We also had carers coming in 3 times a day from the local council so definitely see if they have a district nurse team / help hub so that this can be arranged (gp should be able to help with this).

Most of all, look after yourself. You are doing more than enough and don’t let anyone make you feel bad about anything.

Sorry ... catching a flight so no time to read more than the OP..
Been here with a few family members 😬...
Do not take your mother out ... don’t ageee to them discharging her without them putting an appropriate plan in place ...

If you take her out .. you will struggle to get support from NHS .. and will be left to deal ...
Leave her there to force them to react ... it’s the best thing you can do for her ...

All hospitals have either a discharge social worker or someone on call from an outside agency (small hospitals ) they can get an emergency personal care package authorised typically for 2 weeks after which the family has responsibility to pay to continue if they have over £23k in savings/assets other than home and don't require care under "continuing healthcare" ask for an assessment before you leave

Does your area have a mental health crisis team? Ours does and were able to implement an emergency care package within 48 hours when things reached breaking point here. Dementia had taken over and had reached a point where we were unable to manage ourselves. They assessed immediately and put in 6 weeks of emergency care which gave us time to arrange long term care, which is now working well. We found that once we were under social services things moved a lot quicker. Their default response is to put as much on the family as possible (it's a funding issue sadly, not personal) but stand your ground. It took us saying we couldn't do anything before we were taken seriously.

You want to be asking what care options you have. The first social worker we saw expected us to tell her what we needed when we had no idea what they could even do. The second was much better and set out the options much more clearly and asked us a lot of questions about the situation to get a picture of what would help. You also want to look at whether there are any power of attorneys in place - we just managed to get ours before mental capacity was lost and I think it would have been much harder after that.

Beyond basic care social services might also ask you what your mum likes doing. They focus on keeping people at home as long as possible and in a lot of cases being able to be in the community helps that (particularly with dementia or mental health issues). It can be anything from going to the shops to listening to music. They then asked us what help was needed to do those things and they look at how they can provide that.

With any care there is a financial assessment to see what your mum should be paying for and what she is entitled to but from our experience they were very helpful in explaining what we would need to show them. We are in the SE if it's any help.

Don't underestimate the strain it puts on you. You're entitled to be assessed in your capacity as a carer and they can look at whether you need any support. Be kind to yourself

There's always one...

You need to ring social services ( presuming you are in the UK) and get a care plan established. I am not sure its fair on A&E staff to have to do it.- They really wont know what she needs

depending on your mother finances ,she may or may not have to pay.

I have been in your position, and its the hardest thing ever, There is help out there, but you really do need to organise it and put it in place.

@soontobe60 id prefer to go into care than steal my childs enjoyment and become a burden.

surfskate having seen the toll taken on my parents by the illnesses of my grandparents, I entirely agree. No way would I want to inflict that burden/misery on my DD.

@Soontobe60 that's not fair. Caring for people puts an unimaginable strain on you and you reach a point where you have to put your own well-being first.

We went through multiple cancer diagnoses, surgery and dementia before we held our hands up and said we just couldn't do it any more. In no way did we abandon or give up, we just knew more was needed than we could give. We were in tears almost every day because you reach a point where you can't cope. Caring damages even the best relationship, especially where there are mental health issues at play, never mind relationships that were strained to begin with.

OP I know it feels hard to see it now, but it does get better. The fog does lift. Do you have anyone to look after you?

She needs a ‘best interest meeting’ with her social worker and MDT (after she’s been seen by OT and Physio) and she would qualify for CHC funding xox

I am worried that the capacity issue will scupper thing because at the moment she is deemed to have capacity. This may change though.

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

I am not entirely clear what is going on with the aneurysm and any treatment that will improve her quality of life. There are mental health issues - mine as well as hers. I have BPD and suspect she does too and i am in the middle of trying to get mental health support for her - she has been assessed by a geriatrician and cpn but then nothing seemed to happen.

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

Its her refusal to engage with drs and keep herself safe that is my main concern. She has paranoia and is obsessed by incidents that she perceived to have happened years ago.

She refuses changes in medication.

Its not that i don't want to care for my mother. Its the responsibility that i cannot cope with. and my mothers abusive behaviour that makes her impossible to care for.

Get everything in writing, I cannot stress this enough. Or get a voice recording app on your phone and record every meeting.
All the people involved in my dad's treatment/ care were lovely to our faces but when the shit hits the fan you wouldn't believe how much they deny.
The family are expected to do everything, protect yourself and your own mental health, offer nothing.

Call the Age UK helpline OP, they’ll be able to talk you through exactly what you need to do and provide info about mental capacity. As someone said above it’s not as simple as yes or no, but I’ve seen many cases where local authorities has used the fact that someone has not been formally assessed or diagnoses, and refuses to be, as a reason not to intervene. They’ll be able to arrange a meeting with a local advisor who’ll be familiar with your council area/ hospitals as well if you need it.

Have the liaison psychs been in to give her an assessment, OP?

Who has deemed her to have capacity and when? Some doctors are quick to write on medical notes 'has capacity' but they should have a proper capacity assessment done by a social worker or OT. If things have changed this may need to be redone. Unfortunately if she is deemed to have capacity and refuses carers there is little you can do about it other than try to persuade her. You also need to think about what you need carers for. Washing, dressing, supervising coming down stairs? Carers are great but they may not be able to provide what your mum needs.

I think you need to email the gp and explain all this. They will send a gp out to visit her and get the ball rolling re medication changes etc. My mum was exactly the same about medication- she thought she knew better than everyone what she should be taking and refused to change anything but in the end the gp just changed it all regardless and the local pharmacy sorted it into dosset boxes for her which they delivered.

Soontobe60. Have you cared for someone with dementia and complex medical needs. Its exhausting. Op needs support not your nasty comment. Op have been amazing supporting her mum as long as she has but her mum know needs more support for her needs. Op you are quite right here. My heart goes out to you. x

Also, don’t let them know you’re doing her shopping for her. The more everyone thinks you are doing the less help you will get.

Second getting everything in writing. I was unable to bring my late father home as he needed 24 hour medical care (paralysed down one side, couldn't swallow, he had lived with us previously). The fortnight before he died I got a demand for £9k, out of nowhere. I spent the last few days of my father's life running around trying to sort out what we needed to do about this bill.

Everything had been agreed 10 months earlier, there was no way we should have been paying for his care home, and we had no chance to even discuss it. Fortunately we had taken excellent notes and there had been two of us at the meeting.

I would suggest that if you can take someone clear minded with you that you do, to have a witness, and to write stuff down as things are discussed. Ask questions, and don't agree to anything that you cannot do.

Sending hugs - it's so difficult.

You need to make it crystal clear to the hospital team that you are NOT able to provide any help for her at home. That you can't do any caring for her at all. They will try and get you to say that you will help, pop in to keep an eye etc etc and you need to be clear that isn't the case. Even if you are planning to just in occasionally - if you say that, then that might magically become 'daughter will visit regularly and support' on the discharge plan....

If she can and does do the physical stuff, make a meal, use the loo, get dressed etc then a standard care package might not be any good as if they turn up and she has already done it, or repeatedly refuses to allow them to help, they will pull out anyway. Where we are (SW) there is some, very limited, support from mental health teams to support people - kind of a care package but also includes some enabling eg take out to shops, check hair washed etc. That would be very hard to set up from a hospital d/c team though.

Good luck

Please just make sure she has no house keys on her, otherwise they might send her home with nothing in place. I don't say this lightly since I have known it to happen.

If you are unable for whatever reason to care for her once home, you will have to make this crystal clear to the SW or other staff.

I do hope you can resolve the situation soon - such a worry for you.

You need to ring social services ( presuming you are in the UK) and get a care plan established. I am not sure its fair on A&E staff to have to do it.- They really wont know what she needs

A&E staff won't do it - it's not their job. OP's mum will need to be assessed by Adult Social Care and health working together, because of the complexity of her condtions.

OP, you are absolutely NBU not to take her home until a care package is in place, even if it is only an interim one. ASC services are so stretched (and underfunded) that once home, people have no end of trouble getting assessments done. Families are left to struggle on for weeks, sometimes months, before anything is agreed

Then they use the fact that the family have managed for X weeks to try and reduce the care provided to a minimum. Sometimes they end up having to do it because a safeguarding issue has been raised by another agency.

This is absolutely no criticism of any of the people working in social care, but they are struggling to do a very difficult job with woefully inadequate resources. The system is broken, and cuts to local authority funding is a huge part of the problem.