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.

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).

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.

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.

Thanks so much for this, it's a great post.

My mum is refusing to eat also and sent the dietician and psychiatric team packing! It's so distressing.

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.

Thank you @AnnaMagnani I think im going to take a day or 2 of respite. I'm full of cold and I think some time reflecting on this and getting my head sorted will help. I keep getting really stressed and frustrated then feeling guilty. You cannot pour from an empty cup.

It's really hard also as we are waiting to know how progressed cancer is and next steps. It's been 3 weeks since told cancer but no further forwards. She has infection so they working on treating that 1st, but would be good to know if it's got good/bad prognosis.

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.

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.

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.

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.

Hi all, just an update:

Been very unwell, but starting to come around. Has accepted to have hair washed and a bathe, has suggested having baby food which is a massive step in right direction

She seems to engage better with others, like staff from therapeutic team... rather than family or nurses/Dr's when it comes to support.

I think personally for me, it is going to be visiting but not getting involved with care.

She accepts no help from me whatsoever. For whatever reason... even if its passing her water. Its a firm no and to leave her alone and in raised voice.

However, when visiting and talking normally without trying to help, she is a lot better.

So i think visits without helping, then doing things behind the scenes such as shopping dog looking after etc 2 times a week is great for me. I feel a burdens been lifted by setting boundaries jn this way.

Also, she doesn't want my help, for whatever reason. So we as a family need to accept that moving forwards. It's no good for her, my, or families stress if even supporting a drink of water makes her angry. So I think this is a good step.

Sometimes the best thing to do is be caring eg. Going to visit, buying stuff, support with dogs, but not getting involved in physical care.

Thanks for all support and advice, it's helped me sort my head out.

@FictionalCharacter I am putting boundaries in place now, my brother and sister are finding it harder to take out emotional side from practical and I worry they will put us all in this position. I am a lot younger, so they do not really value or listen to my opinion which causes a lot of problems. As I am youngest by 15+years, often my opinion counts for nought unfortunately.

I know what is potentially going to happen and my mental health is in gutter cuz of it. That is why I keep telling them now what I am willing to do and putting boundaries in.

I can totally see my sister taking on a big brunt of this, I try to protect their mental and physical health also. However I feel they think im just being a stubborn nuisance.

My mum reacts much bettercto others than help from family, so i feel ifs also in mums best interests to have care in place that isn't from us. So we can enjoy time with her, she hates us advising of offering anything, which leads to tension, arguments and her refusing medication or food etc.

I'd rather help from afar with stuff and have a decent relationship, than force care and end up arguing and falling out with family.

Let's see, day by day is my new motto.