Elderly mother wanting hospital discharge against advice

[TheoriginalLEM]

My mother is difficult to say the least. She is 85 and has complex medical needs. She is self neglecting and just over a week ago was admitted to hospital at deaths door, she has carers but was refusing food and water.

She agreed to stay in hospital with a view to a transfer to a cottage hospital for convalesence and rehab. She has MH issues and is under the useless psychiatrist.

The self neglect has been going for a long time.

I don't want her to go home, yes she is better than she was but is frail. She was vile to me yesterday (she always is)- apparently the Dr said she could go home but the nurse said this wasn't true.

I'm going today to hopefully speak to the dr or nurse in charge.

She wants to self discharge but i kniw this will just start the cycle of self neglect and quite frankly, running me ragged, and I think it would be a huge mistake.

The issue is I don't have power of attorney (big mistake) and she has capacity - surely though the medics can step in if someone isn't self caring and refusing care?

Keep saying “I am not her carer” and “Unsafe discharge”.

Sorry for brevity, I’m off now to take my elderly & demanding mum out from her (fab) care home for lunch before DH and I go away for a much needed break... 😐

Why don't you want her to go into long-term care? I think that's the best solution now as she self-neglects and doesn't eat and drink at home due to mental health issues. She doesn't seem to have good awareness of her decisions (e.g. knowing that not eating and drinking would lead to death) and there may well be issues with her capacity.

You need to a) talk with the doctor who is overseeing her case about what next and be open to long-term care as at 85 with her issues, this is the most realistic. b) state you cannot do any care yourself.

Between these two things, she will either be returned home with support (not likely IMO as she got too sick and went into hospital) or will go into a care home.

I think your idea she won't be happy in a home is holding you back from getting her appropriate care. 85 year olds who cannot feed/drink/get food or walk properly need more care than will be possible at home, even with carers coming in (as they only come in for a limited time) and I think you should support your mum in taking a care home place. It's hard to see how someone with 'full capacity' would self-neglect and end up in hospital repeatedly and I think they'll either make a best interest decision or encourage her strongly to agree.

It's so so hard OP. The capacity issue is really complex, but ultimately she is allowed to make unwise decisions as long as she demonstrates that she understand the choice and its consequences. You have to be make it absolutely clear that you will not be supporting her on discharge as you don't deem it to be a safe choice. Make sure that you have had a meeting with the whole MDT so you know and they know the full situation.
Some areas have community teams that work with complex patients such as your mum who are at risk in the community but who refuse to go to / stay in hospital. Ultimately though your mum can refuse everything.
You need to persuade her to set up the POA, but again if she has capacity you can't make the decisions for her right now, only once the capacity is no longer there. Hugs

Sounds so tough and like you are under lots of strain OP.

Lots of really accurate advice re capacity and the legislation the hospital have to adhere to. I would request to speak with the ward OT and not the medical staff as all changes to care recommendations are based on the outcome of the acute OT's assessment. She will however need to consent to this assessment as others have highlighted, if she has the capacity to articulate the consequences for and against a reassessment. It may be she has already had an OT assessment and they felt her previous package was sufficient or already maximised within her consent?

She will only also fit the criteria for rehab in a cottage hospital if the therapists feel she has potential and motivation to engage and progress? Rehab is not a passive process.

If not already, I'd ask the OT for info on carers support too for yourself. Def take a step back as hard as it will be.

Just been to the hospital and she is in a vile temper.

I spoke to the dr who said that a Dr did tell her yesterday she could go home, however the geriatric consultant rang and said she wasn't to be discharged and a "best interest" meeting has been called.

I need to be prepared with what I want to happen , trouble is i dont know what that is.

Dont feel you have to know exactly what you want. Sounds like an extra stress. You could write down thoughts as they occur to you - worries you have about her coping or her mood. It does sound like trying to get either a hospital psychiatrist to the meeting or an opinion from her usual psychiatrist would be valuable.

Could you write down the problems with each of the scenarios???

You don't have to make any decision but you can then be explicit with the problems they need to solve/overcome for each one?

Discharge to home:
Inadequate care for her needs
Self neglect
You can't offer the support you did previously

You can only tell the hospital you will not offer support.

Does your own GP know about this? I’m concerned for your health.

I’m amazed she’s still deemed to have capacity but there it is, she can sort her own stuff out. A home would be best surely?

I know your story. I have everything crossed for you

Do you have to attend the meeting?.

Fluffy makes a good point

Best way to show you can’t do any more.

Tell them you will no longer be offering support (even if you lying) I'm sorry your going through this

She'll not like a home but she doesn't sound happy in her own home anyway. I'd look into a care home.

I’m sorry you are in this situation. My late MIL had multiple hospital stays in her last few years (died last Spring) and on a couple of occasions DH and his brother actively refused to allow her to be discharged as they knew, from bitter experience, that an appropriate care package was not in place for her needs. It sounds harsh but if the expectation from the hospital is that you will care for her then sadly they will move her on and things then become 10 times more difficult to set up.

Have a chat with Age UK, they were great with my DH, and if she is to go home can you look at contact some local day centres as sometimes they run minibuses that can pick people up to get them out of the house.

Sorry if I sound abrupt, but a care home is the best solution at this stage, for both your sakes.

I speak from experience here. My physical and mental health really suffered trying to look after a once adorable Mum who turned very nasty to me during her illness. Nothing I did was good enough and she physically abused me, biting scratching, hitting etc. and neglected herself too.

It was pure torture. I loved her but didn't like her very much during that time, but I did understand it was her illness.

Anyways, it got to the stage where I could not cope anymore. We were fortunate in that Mum could self fund (I'm not in UK but a similar system applies to funding for care). Found a lovely spot very near to us and in she went kicking and screaming of course! There was no other solution.

We were advised not to visit for a week to let her settle in. My God the difference in her when I eventually saw her! Not back to her old self, but not as bad as when at home either. The care staff handled her temper tantrums really well, they are trained and inspected here every six months as are the standards in the NH. And remember they are not emotionally involved as we are, and can deal with anything they throw at them.

Sorry that was long, but honestly, if Mum had not gone into care she would have been dead in a year and I would have totally cracked up. As it was she survived another 8 years, got much of her mobility back with physio, had referrals to geriatric specialist services in a major teaching hospital, she could go out with us to the village for tea and a walk (in wheelchair).

It really allowed me to enjoy her and recover from the trauma myself.

Just my 2cents. Wishing you well.

I've been there, with a stubborn, awkward but perfectly sane mother who was hoarding and living in deeply unsanitary conditions, so my heart goes out to you

The key phrase to keep repeating is 'unsafe discharge', to everyone. If you can support this with any evidence of how she has been living (photos if you can), then this helps. I was advised to take photos by people on here and it really made a difference. The other phrase I found useful was 'vulnerable adult'.

Also, have you found the hospital social workers yet? They have other budgets in order to free up beds, and my mother was able to get a month of respite care in a care home to give everyone a chance to assess and recover and think.

You don't have to decide what to do with her, right now it is not all your responsibility. Perhaps all you need to decide is that you cannot have her as entirely your responsibility and see what options come up?

Finally, the people on the Elderly Parents board are knowledgeable, kind and helpful, they sorted so much out for me when my mother was ill. If you ask this question there, you will get even more help.

Good luck.

The gauge of capacity seems to be if a person can count backwards from 100 and knows who donald trump is

sorry, this is BS. it's a complex assessment involving the ability of the person to take in information, retain it, weigh it up to make a decision and communicate that decision.

OP I would make it clear that you don't think she's safe and you won't/can't do any caring.

I think it is serial sevens (counting back in sevens from 100) and if they can spell "World" backwards, things like this are part of the Mini Mental Status exam anyway

I would just stand back it is good they are doing this meeting, if they ask you just say things like Vulnerable adult / unsafe, you are concerned but can't do any further and feel she needs more support, tell them risks etc and fingers crossed they will get her sorted in some kind of care home. or at least more support.

That's the MOCA or the MMSE, screen for cognitive impairment. Mental Capacity assessment for a decision is different. Capacity is assumed but a poor MOCA score would suggest capacity might be absent for a decision.

We were told by SS that they have to tick boxes before they can move on to next thing. When DM wanted to go home we said don’t be ridiculous she’ll be back in 24 hrs and she sadly was. They then deemed her not of capacity for this decision and in best Interests she had to go into residential care. Sadly the second extended stay in hospital removed the last bit of physical capability and now there is no way she could ever live independently again anyway.

She does however still have capacity for day to day things like self care and is perfectly within her rights to refuse it and she mostly does. That’s up to her though and I wouldn’t force her to let the carers wash her against her will much as it goes against the grain to see her so grubby.

I accept that she is at least warm, fed and her health and care needs are looked after (though she hates it) and although I visit several times a week I’m very glad it’s no longer my responsibility.

It genuinely sounds as though residential care would be best for both of you. She’s entitled to self neglect if she wants as are you or anybody else. The run ragged bit though is down to how much you are willing to take on and I think you need to draw a line and say enough.

a "best interest" meeting has been called

Find out for when and move heaven and earth to be there.

Say your piece. Over and over again.

I cannot cope. She cannot cope, even with carers. A full social, physical, mental and dementia assessment is required. I need respite. She needs greater input. She cannot be discharged 'as is' or under the previous care package.

You have to accept that a care home may be on the cards.

Is it a financial concern about the care home, would she be self funding or qualify for paid care? It does sound like it might be best, and take the pressure off the OP as well.

I think it is serial sevens (counting back in sevens from 100) I'm screwed then!!

My point of that is that they assess cognition, and memory but her paranoia, delusions and aggression ate being put to one side. However they do seem to be sitting up and listening more on that score. She has always been difficult, always.

@artisanparsnips - I'm so sorry you went through that with your mum, that must have been awful. I think that the fact my mum has been like this my whole life almost makes it easier iyswim.

It turns out they were planning to send her home but the consultant geriatrician was told and stepped in with the best interest meeting. So thank you to her! I get on with her well she's very blunt which is what is needed.

I feel so guilty it's like I'm planing her off but i cant care for her because the dynamic is that she is the parent and I must do as she says

I feel so guilty it's like I'm planing her off but i cant care for her because the dynamic is that she is the parent and I must do as she says

Try and let go of that, if it is making your health worse. I have a similar mother