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

Whatever you do @Healingfrommothernarc , make it absolutely clear that you will NOT be her carer if they discharge her. If she needs care they can't discharge her until it's in place, and a concerned daughter is exactly the kind of person they'll be eyeing up to provide it. They just want to free up the bed; they're not concerned about the patient's family.

Or give it away to scammers - as a neighbour of ours did - to the tune of £100+k. But the law takes the view that people who officially have capacity, are free to throw their money away however they wish to.

Lack of capacity is very hard to assess, unless it's significant (I.e. significant head injury, advanced dementia). A condition alone doesn't define capacity and capacity can be fluctuating. Some days able to process information.

Legally the starting point is the person has capacity, and then work down from major decisions(selling house) to minor decisions ( what to eat). Although some decisions may not be in the best interest of the person or not agreed by all, unless capacity is reduced they must be left to make these decisions.

If person is lacking capacity, there is also strict principles that go along with making the decision. If you google 5 principles of capacity it will explain easier than I can.

You can chip away and report concerns but ultimately it's her call.

DM is unable to wash but refuses to let others help her. Shes 88 and has osteoporosis My niece lives there and works in a school for SEN children and caught head lice off one of the kids. Apparently the child has had it for ages and the reason is the parents cant keep on top of it because he and his brothers and sisters keep passing it to each other. 🙄 Dreading DM catching it because she will just refuse to be touched.

As others have said, it is very normal when you have cancer to lose your appetite and not eat.

There are no good treatments for this and it is basically impossible to force someone to eat when they don't want to, even when they are mentally with it.

Sorry you and your mum are having such tough times.

Couple of thoughts that may help...
capacity isn't 'taken away', it is lost. People can have capacity for some decisions/areas of life, but not others but the starting point is that all adults should be assumed to have capacity until there's evidence to the contrary. For example, someone 'without capacity' might not be able to make financial decisions, but could still be able to make decisions about personal care and washing etc, so even if she was deemed to have lost capacity, you probably still couldn't make her wash. There are criteria around decision making that have to be met/not met to make an assessment of capacity.

Secondly, before she's assessed by a psychiatrist it's important for her acute medical problems to be fixed/optimised (eg. if she's in hospital with an infection, then that may affect her cognition and not reflect her usual state... treating the infection may improve her cognition. Ditto for nutritional deficiencies, etc. While she's accepting medical treatment then plodding along with that whilst building a picture of what's 'normal for her' over time may help). If the doctors/nurses are respecting her wishes for relatives to not be told the details then that suggests they probably thing she does retain some degree of capacity to make decisions. It does sometimes take some time for a team who've never met someone before to work out whether their decision making is just due to being physically ill, a bit eccentric or due to a genuine cognitive impairment.

lastly, people who do have capacity are allowed to make bad decisions and it's incredibly hard for the people around them to watch the inevitable car crash develop, but there's really not much you can do about it. Probably the best a family can do in that scenario is express their concerns and make sure the doctors receive that message and perhaps decline to get too involved either with discharge planning/ mopping up when the inevitable does happen.

Just to add it’s normally for people to lose their appetite and significantly reduce how much they eat in the last 6 months of their life.

I would want to try and find out why she isn’t eating, is it too find physically to swallow, not being hungry/nauseous, worried about getting to the bathroom, constipation or is she just in her 80s with cancer and wanting to hurry up her death (perfectly reasonable in my opinion).

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

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.

@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.

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.

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!

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.

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.

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.

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.

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.

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.

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.