How long can someone self neglect before capacity is taken away?

[Healingfrommothernarc]

I am curious because my mum is very unwell in hospital. Early 80s.I think she has narcissistic personality disorder. She has been diagnosed with cancer and has bad infection. She was supposed to be assessed by psychiatric but refused. She had not showered or bathed for 3 weeks before going in, been in a week and still refusing to shower or be cleaned. She has been refusing to eat too.

She also was refusing to go to hospital after not eating for weeks and being on deaths door. The only reason she agreed to go into hospital is because the paramedic said they would have todo safeguarding referral to social services if she said no. My mum hates social services.

How long can this continue before capacity is taken away? I think she is showing signs of dementia too.

I am wondering the processes etc.

I am worried if she is discharged, with having capacity she will be refusing to take food medicine or look after house or dogs. Also. She is very very unwell.

I really want to help and support her but she tells family to go away and is the same when we visit hospital. She tells hospital staff go leave her alone and to go away. I love her but I can't cope with the stress of her saying hurtful things onto of all this and worrying she isn't going to be with us much longer, or what it will be like when she comes out as she needs 24 hour care.

How long can it go on for?

I am just worried and think if she comes out of hospital I will break with stress of it all.

Dr has put in rapid response,but heard nothing and hospital isn't forthcoming with information as my mum says she doesn't want family to know. We get told some stuff, but surely we should have had a family consultation by now?

This is 2nd stint in hospital.

She has a Loving, caring family. I put up with a lot of sharp tongued behaviour but tolerate it as I want her to be comfortable. As do other family members.

I just don't know how as a family we will cope if she's deemed to have capacity to continue like this.

I'm having daily panic attacks.

Just looking for advice really. Thank you for reading, I get a lot from reading people stories and how others deal.

It's hardest thing I've had to deal with in my life at the moment.

Thanks again.

It’s incredibly stressful. My mums GP did a capacity test quite easily but my mum had been diagnosed with Alzheimer’s for a couple of years at that point.

To determine capacity, I think they try and understand their functioning and decision making eg around finances…do they understand how much money they have access to, where it is, how to pay for things etc

My mum also stopped eating and it is very hard to persuade someone who really just doesn’t want to eat.

Have a chat with the GP re capacity.

I'm so sorry you are facing this.

People are assumed to have mental capacity for decisions unless they have a disorder of mind or brain, which might mean their mental capacity for a decision will be assessed.

You could inform the hospital team about your views, even if they can't tell you much - I would ring the ward. See if you can talk to an occupational therapist.

My mum hasn’t showered in over 2 years &. Is extremely difficult to deal with, I sympathise op. She had 2 strokes & discharged herself & got a taxi home after refusing physio!

I would just keep telling anyone & everyone at the hospital how you feel.

Thanks all, my mum doesn't even know who phone contracts, house insurance, dog insurance,or bills etc are with because my dad looked after them before he passed 3 years a go. That fell to my sister and brother who do things on behalf of my mum. @BananaSpanner @PermanentTemporary would this make a difference?

I'm so sorry to hear... its so hard isn't it. I'm glad of this forum, friends don't understand how challenging it is when parenr so stubborn. My dad passed of cancer, but was accepting of help and support. Even though it was awful, he made things easy for the family even though in so much pain and suffering. My mum fights everything and everyone. I love her and want best for her ut makes it impossible.

How is she if your mum won't bathe at all? Has it affected her skin etc?

In healthcare you do see a fair number of people that don't wash.

Bit smelly, bit crusty, usually a bit yeasty. But if they don't have pressure area problems, their skin is fine apart from that.

It truly is awful & very stressful.

Her skin isn’t good, she picks at her skin too & is convinced it’s mites rather than the fact she won’t shower. I wipe her down with a flannel & change her once a week but she won’t let carers do any of it. I had to shave all her hair off because it was matted.

She either refuses hospital or discharged herself saying her dog needs her & she needs to be home. All the services have her down as ‘won’t engage/refuses help’.

It’s so difficult, I really feel for you.

Can you get the poor dogs away at least? The RSPCA and dog warden may be helpful. It’s bad enough that your mum neglects herself but the animals have no choice.
I would also put in writing to the hospital that your mother is at serious risk of harm on discharge because of her behaviour and you doubt her mental capacity, giving details as to why. Make clear that it is essential that her capacity is assessed and a plan made for her before she is discharged and that as her next of kin you need to be involved in this as your mother may not be accurate or truthful with any information she provides.

Tell the hospital that you want it put on her written notes that as her daughter you are of the opinion that this would be an unsafe discharge.

If she still loves the dogs, perhaps someone can take and care for them and then she has to “earn” them back by showing that she can take care of herself and her house first?

It can go for a long time.

In general people are presumed to have capacity.

The legal bar is very low - they basically need to understand the consequences of their decisions.

Lack of showering and self care doesn't come anywhere near it.

My mother's GP told us that just because we don't like or agree with her decisions, it doesn't mean she doesn't have capacity to make those decisions.
When the doctor told us she was going to be discharged from hospital, at this point she could barely move, we told him we didn't think she could go home, he said she had mental capacity, wasn't ill, and had said she wants to go home.
She didn't wash, she cancelled the cleaner, she didn't eat very much, but there was nothing we could do as she had capacity.

Not true, the starting point of the mental capacity assessment is the functional test and if they are determined to lack mental capacity then the diagnostic test is looked at but no formal diagnosis is required just a belief that there is something. If there are concerns about the person's decision making or behaviours then a MCA should be completed.

Principle one is presume capacity unless there are concerns about the person's ability to make decisions then this can be rebutted. Depending on the situation a mental capacity should be completed and I would hope one would be completed for the person given self neglect is a safeguarding concern.

I would say that in your mum's situation given the history of refusing to engage and self neglect I would expect a mental capacity assessment to be completed which pays attention to the executative functioning element. She may have delirium which could be making things worse. Try not to worry.

I think there is a difference between not knowing how to do something because it’s always been done for you and having complete and utter memory and capability loss in terms of your own finances and how to manage them. My mum had always been very independent and capable, she then went to thinking she was 40 years younger than she was, assumed it was the 1960s/70s, didn’t recognise her own home and thought she was a guest and had no idea what money she had, where it was kept, what bills she might have to pay etc. Lack of self care was a thing for her too but there was a lot more going on.

This is really hard. People can make whatever unwise decisions they want if they have capacity even if those decisions lead to catastrophic consequences for them. They need to have the ability to understand, retain and weigh up information and to communicate their decision and capacity is decision specific so you might be able to decide what you want for dinner, whether or not you want a wash but not where you’re going to live. Mental health problems can be a bit different and come under the mental health act.
I think the best thing to do is to keep expressing your concerns to the hospital staff, maybe write it all down and ask that they specifically assess her capacity, also request a mental health assessment if you feel that’s appropriate - her nearest relative has the right to request a mental health act assessment.
It may be that the outcome of all this is that she does have capacity and can be discharged to the same situation. If this is the case - and even if it isn’t - you need to think about protecting yourself and attending to your own mental health. This might mean having less contact with her, being clear about what you can and can’t manage, maybe see your own GP too if you’re struggling with panic.
Good luck, it is very hard.

The other thing to bear in mind is that capacity is a spectrum. Even if she lacks capacity in some areas (for example, making decisions about her treatment) she may be deemed to have capacity in others ( eg. washing or changing clothes). Almost no one lacks capacity in every area and people with capacity have the right to make unwise decisions enshrined in law.
It’s also worth remembering that just because someone lacks capacity it doesn’t mean that they’ll necessarily be forced to do something they don’t want to do. Things like washing and eating do only tend to be enforced/encouraged to be point where it’s no longer a safeguarding concern. I’m a MH nurse and I work on a ward where self neglect does tend to be a issue and most of my patients are deemed to lack capacity. We still only gently remind unless it’s becoming a real problem but that threshold is much much higher than you might imagine.

When SS got involved with my mum she was still fairly articulate. She was deemed to have capacity even when she was telling the social worker that the ladies in the ward had held a party for her the night before but had been unable to find her so she hadn't joined in. She was generally quite amenable to people in authority so when the social worker said she needed 24/7 care and she should try a home she agreed. Absolutely hated it and in her more lucid moments she asks me to take her home but is still there two and a half years later.

We had very, very similar with FIL. Refused to see GP, refused to go into hospital (several episodes of ambulance being called and him self-discharging) refused to take medication, refused to eat, refused to cooperate whatsoever, with anything or anyone.

It was an incredibly trying time. Eventually became too weak to self-discharge, still refused food/medication/anything to help and was unpleasant beyond belief to everyone. I think dementia was at play, but he was never assessed due to 'everything else' that was going on. So in the end the medical staff continued to try, and continued to encourage, but eventually we agreed to stop any intervention as he just wouldn't have it. It started in September and he died just after Christmas, likely from something preventable but with no cooperation, there was nothing really to be done.

My mother's GP told us that just because we don't like or agree with her decisions, it doesn't mean she doesn't have capacity to make those decisions.

I think this an important point to consider.

Not washing is a choice some people make. Not eating is a choice some people make.

Establishing whether someone has capacity is more than just 'are they making the right choices'. You can have capacity and gamble all your money away!

If you use the decision - do I need a wash?

The person may be able to tell you no as they normally don't wash very often - would be prob count as having capacity

Or no as they washed yesterday. If they didn't wash yesterday, then more than likely they don't have capacity to this decision but where has it got you?

If you walk in and try to start washing them, and they thump you, it hasn't really mattered that they didn't have capacity for the decision, they still aren't getting a wash.

@AnnaMagnani Exactly.
You end up doing a best interests meeting, a body map (if they let you look), maybe a safeguarding, probably another best interests meeting…

The fact remains that, even if they lack capacity, washing will only be forced if there’s evidence of significant skin breakdown or infection. Anything stronger than gentle encouragement (restraints, sedation, anaesthetic) is just too restrictive and would likely be very distressing anyway. People who lack capacity still have the right to control their own bodies and being a little musty isn’t really hurting anyone.

I have been through this with elderly relatives as well. I wonder if it is in a way about control. All these stressful things are happening to me (illnesses etc) out of my control, so I am going to control the rest. Perhaps.

She sounds very ill. Possibly end of life stage. Something which can happen is they end up going in and out of hospital in a series of 'crises' which is stressful for everyone. They can be in denial about their illness as well.

It's really hard.

Thanks for replies and sharing everyone. Its interesting and food for thought.

The cinnamon trust maybe able to look after her dogs while she is in hospital.