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AIBU to want someone to help us before he dies?

(40 Posts)
justwantittoend Wed 10-Jun-20 22:57:04

Going to keep this vague just in case.
Have an adult (in 20s) family member who suffers from mental health issues, plus anxiety, plus autism, plus behind in age, say they are 25 they would be 17/18 in reality. Refuses to take any and all medication (they won't even use something like savlon as it might give them side effects)

The problem is they live in absolute squaller, as in, if they are smoking a cigarette they will just use whatever is near them to flick the ash, including the carpet, they will put it out and throw the butt in a corner of the room, same goes for rubbish, food, clothes, the smell almost makes you sick, there is mold and damp everywhere, rotting food in fridge/cupboards/in storage areas.
As a family we try to help, they have only lived there two years and the amount of times we have been in, cleared it all, got it back to how it was when they moved in etc, few weeks ago we removed 12 black bin bags full of rubbish/clothes with mold on them, today we have had to clear their entire bedroom of all the furniture as even that was full of mold, rubbish everyhwere. His mental health team/doctor/carers/housing officer have all seen the way he is living and never say anything.

We can no longer do all this, I have developed two chronic illnesses over the last year and six months ago I had a brain infection, I am not well enough to keep doing this every few weeks, My mother helps me when I do it but she is ill herself as well, we can no longer cope.
We have also tried paying a cleaner to help once a week but she quit (rightly so) when he started defecating on his living room floor, and she found maggots in his food cupborads.

The problem we have is this, because they are an adult nobody will speak to us about them, we have tried his housing officer, his mental health team, his doctor and they all said the same thing, he is an adult. He did have carers coming in to help him cook, but even they couldn't do anything with him as he throws away all his plates/cups/kettle/knifes etc instead of washing them he just throws them so they can't really work with him at all, they are losing so much weight that he is looking like skin and bones.

Is there anything we can do to get someone to listen? someone to help? or is he supposed to die before our eyes as he can't take care of himself. He says if he goes into assisted living he will end his life. they will not move in with me or anyone else as they think they are coping. is there anything at all we can do as we are all convinced we are going to lose them, its just a case of when. to give an idea they have lost 6 stone in weight over the last 5 months, he turns up at our houses almost everyday for us to feed him and give him money and we can no longer cope.

OP’s posts: |
Throckmorton Wed 10-Jun-20 23:10:29

Oh gosh, I am so sorry. I couldn't read and run, even though I don't think I can suggest anything useful. Can you just keep on and on calling social working and using the phrase "vulnerable adult" and asking what they will say when he end up dying? Can you try your MP? Could you see if your relative would move in with you "while you tidy their place up", ie an excuse to at least have them with you for a little bit and keep them safe for a while (although you risk social services disclaiming responsibility for him that way I think). Are there any relevant charities (Mind maybe?) that would be worth contacting?

OurChristmasMiracle Wed 10-Jun-20 23:15:47

Have you contacted adult social services? They may be able to do an assessment but reality is he does need assisted living.

Secondly and as harsh as this is- stop cleaning behind him, this means he has appropriate help, stop giving him money and stop feeding him. The services need to see he isn’t capable of living independently.

justwantittoend Wed 10-Jun-20 23:23:18

Forgot to say he does have a social worker, he has been to their house and seen it all for himself but yet again nothing was done.

OP’s posts: |
dudsville Wed 10-Jun-20 23:23:37

The situation sounds awful, I'm so sorry. The missing information here is what he's telling the mental health team (this could be stopping further intervention), and whether they've deemed him to have capacity to make these awful decisions. And they may not be able to tell you this if he states he doesn't want them to work more closely with you.

slipperywhensparticus Wed 10-Jun-20 23:26:03

While you are helping they will not

gamerchick Wed 10-Jun-20 23:28:24

The problem is when it comes to SS is that they see you all helping him. That in their eyes means they dont have to take responsibility.

If you really want intervention, you all need to pull up the drawbridge. Tell them you wash your hands of it all and if anything happens to them it's on them and stick to it.

Tough to do though. Its a who can blink first type of thing.

AwkwardPaws27 Wed 10-Jun-20 23:29:11

Honestly, I'd write a complaint letter and send it to his GP, social worker, mental health team, and the local primary care trust and mental health trust (cc them all in the letter so they all know who's got it). If there isn't an adequate response then I'd involve your local MP.
Yes, there are situations where adults with capacity are allowed to make bad decisions but the severity of impact on his health suggests that he needs a much higher level of support - maybe assisted living or similar.
I'd highlight the severity of the weight loss, and any illness potentially linked to the living conditions, and request another assessment of his capacity relating to independent living.

Gingerkittykat Thu 11-Jun-20 03:11:49

The problem you are having is the same I had with a relative with mental health problems in that they were clearly unwell but just below the threshold of being sectioned.

Have you been in touch with any mental health carers groups?

I saw you mentioned he couldn't have support workers coming in but you need to emphasise the danger he is in. Throwing cigarette buts into a pile in the corner is a danger to him and possibly neighbours if a fire starts.

Have you considered calling environmental health when it gets really bad? They can declare a house unfit to live in till it is cleaned up and that would force the people helping him to take some action.

MrsAvocet Thu 11-Jun-20 03:28:32

Goodness that sounds awful. I am so sorry to hear that you, and he, are having to go through this. I have no personal experience but have heard from family members and friends how poor mental health care is that country but your story is even worse than the ones they have told me. All I can think of suggesting is that you contact one of the mental health charities like Mind, and see if they can help advocate for him/you. Sadly I suspect they will have heard about situations like this before and may know ways to get help. I hope things improve

Purpleartichoke Thu 11-Jun-20 03:59:41

Would he be willing to sign a medical
Power of attorney document. One that limited your power to override his decisions except in extreme circumstances , but enabled you to advocate on his behalf?

SnuffleBadger Thu 11-Jun-20 04:00:37

Have you considered contacting your local safeguarding team? Your relative definitely fits the criteria of someone who has clear care and support needs and is at risk of deterioration. Self-neglect is recognised as a category of abuse within safeguarding. Has you relative ever had a formal and in-depth mental capacity assessment to establish his understanding of his behaviours and what the potential risks are to his well-being?

Your local authority has a statutory responsibility to investigate all safeguarding concerns that are raised and there is a formal process for this. Don't let them fob you off because he already has a social worker, their current input is clearly ineffective.

It sounds like an awful situation and I hope your relative can get some effective support ASAP.

psychomath Thu 11-Jun-20 04:14:06

Just on a practical note, you can get specialist cleaners who are set up to deal with situations like this - often the people who do crime/accident scene cleaning will also offer a service for cleaning out the homes of hoarders and others with severe mental health issues. I don't know how much they charge though so it may not be feasible as a regular service.

I'm sorry I can't offer advice on any of the rest, that sounds really difficult for you all sad

AlovelybitofsquirrelJackie Thu 11-Jun-20 04:40:56

If he is deemed to have full mental capacity making unwise decisions can't be stopped. However, the discarding of cigarettes in this way creates a public safety issue for adjoining neighbours and can't be ignored. Adult social care have a duty here and as PP's have said as long as family pick up the slack the inclination to do more on their part will be reduced. Does he cooperate with the mental health team and social date? Tricky if he doesn't and doesn't meet sectionable thresholds. I think making a lot of noise to the professionals is key here and stop carrying the burden alone as you need to look after your health and well-being

Aridane Thu 11-Jun-20 06:06:31



jokolo Thu 11-Jun-20 06:11:44

The only way you can get him help is to stop helping. It's a hard lesson but it's the only way. It's a terrible game of chicken and you must play it with someone else's life. But in the long run, if you win, it's better for them. I have played this particular horrorshow for 20 years and I can tell you this much:

The authorities will make you feel like shit about this. It's hard to bear, but they are not your ally. They are your opponent (not your enemy, but your opponent). Your goal is to get services and their goal is to deny them and get you to do it for free, so your goals are in opposition. The central goal of all social workers/key workers/health workers is to deny access to services and reduce the caseload*.

This is a safeguarding issue and a liability issue. Keep using those words. You need to make his life and death someone's liability. He is a vulnerable adult and they are neglecting him. Make this their problem.

Get as many eyes on the case as possible and do this performatively, so write (calm, sane) emails and CC people from cross agencies and always attach at least their boss as well. Involve your MP and local councillors. At the same time, identify one or two individuals and use their name over and over to everyone else. Praise them, thank them for their help over and over. Say to all the other people how much work they are doing. It doesn't much matter if they actually do anything, you just need to make them think there will be some internal oversight or consequences for his death and that they will be associated with it.

Don't blame or make someone a scapegoat for the failures - they will do that themselves anyway and if you do it they will close ranks. Praise someone. Never express your actual emotions to any of them. They are not your allies and any of your feelings will be used against you.

They seek to externalise consequences so you must continually return those consequences to them.

*They may have other reasons, admirable reasons, for going into their line of work but in a strategic sense this is always their goal because this is how all our services work.

Coldhandscoldheart Thu 11-Jun-20 06:45:12

You poor things. Can I just ask are you in the UK? Most of the advice you get will be based on that assumption, but it will vary country to country.

I would add to pp, Set up a separate folder for any emails you Send/receive.
Buy a small notebook, and keep it near at hand with a pen.
Document time date & name every phone call & contact /intervention with relative.
Eg mon 8.6.20 11:20 a.m phoned ss Spoke to joe smith re xyz.

Mon 12:30 relative turned up, unkempt, needed food & money, gave £x

You’ll develop your own shorthand.
As pp (*@jokolo*’s post is good) you probably need to step right back from relative to force state intervention. Reality is, your health means that even if you don’t want to, you’re going to have to, you physically can’t keep doing it.
Having a conversation with relative about that might help the transition, but it sounds as if he won’t take it on board.

By the by, if he just chucks his plates & cutlery, I’d just buy disposable.

makingmammaries Thu 11-Jun-20 06:51:48

Put the issues and perceived dangers in writing, registered letter, to social services adult care section. They will have a hard ignoring that as it could come back to haunt them. Follow up a month later, again in writing, with a copy to MP if there is no action.

Ireolu Thu 11-Jun-20 06:54:02

Push the social worker. This person clearly needs assisted living. It may be/become unsafe for them to live on their own. How do they manage finances? There are a few homes some funded that look after people like this. Be on at the social worker.

PopsicleHustler Thu 11-Jun-20 07:38:17

Wow. I would hound social services to help him. I would be on the phone constant to get him the help he needs.
He needs the help and he also needs a good talking too about his medications as this may help him along the way. If he says he will kill himself over assisted living,is that just a phrase. Or is he actually deadly serious. As I know a lot of people say I'm going to kill myself if this bloody tooth ache doesn't go. Sounds extreme, but some people do use that as a phrase as in would hate for that to happen. I'd hate for him to go to assisted living if it would make him miserable and depressed and have suicidal thoughts. I would literally call the social, doctors or who ever and lay it on thick. As for the cleaning, he's big enough to smoke so is he big enough to clean. Is he really like, unable to clean physically and mentally or is it just a care of his mental health making him this way. Poor guy. I really feel sorry for him especially if he doesnt understand what he is doing or why is he doing it like going toilet on the floor. But honesty, I would say be on the phone constantly with the mental health team and social services for adults to really push through he needs help.

I hope you can get this situation resolved in the best interests of your relative

TARSCOUT Thu 11-Jun-20 07:38:22

Have you not posted this exact same thing before? If not you then literally an identical post a few months back?

louloubelx Thu 11-Jun-20 07:47:51

You need to get his social services team to escalate this. I can try to find out some more info on how you would do it if that helps?

Samtsirch Thu 11-Jun-20 07:52:12

Would it be appropriate to have them sectioned under the mental health act on the grounds of them being a danger to themselves?
This may help with getting meds sorted and buy you time to access more support from SS and community mental health teams.
Not sure if this is still possible, but a GP may be able to advise.

Daisyxxchainxx Thu 11-Jun-20 07:58:00

Hi. I have been in a situation. I used to do homecare. I went into this old lady and her 40ish year old son lived with her. He also did carework which was a joke as his own home was a disgusting mess. The kitchen had a pile of stuff for the tip at one end of it. They had binbags instead of washing baskets. Bricks on the floor. All work surfaces were piled up. He would go to the shop and buy out of date food and feed his mum it for days in end. Stale donuts. Tins of food left half eaten in the fridge. No wardrobes, clothes were piled up. They used to dry the clothes in the bathroom and it stank of mould. He slept on the sofa. It stank. The spare room was piled up with clutter to the ceiling. The garden was never cut. Grass was so high! His mum couldn't use the bathroom or toilet due to the clothes drying . so she had a commode. I remember one day he wouldn't let her have it out the living room. Because he was asleep and naked! So I made a path to the toilet. She fell over in the cluttered bathroom.

It was like something out of a horror movie. The house was never cleaned. Not ever! Pots got washed by him. But they didn't hoover or wash anything down. The cobwebs were hanging several feet of the ceiling. The whole house was depressing.

His mum got poorly in her final weeks. She started to vomit alot. She was laid in bed puking into a microwave mash potato pot. I'll never forget how he'd rinse it out and give it back. Really upset me to see such poverty and such unhygienic living conditions. How he let it get so bad is beyond me. But he did. The social services were aware of it. They were the ones who arranged carers. I always kept my boss in the picture. Also paramedics and nurses went in. Nothing was ever done. She died in her bed alone in the middle of the night. He was out drinking.

LakieLady Thu 11-Jun-20 08:21:42

Definitely a safeguarding issue. Bypass his usual SW (who may be part of MH services rather than Adult Social Care), contact the council's Adult Social Services and tell them you want to report a safeguarding issue. Stress the weight loss and the fire risk, and that he is vulnerable because of his autism. I'd steer clear of mentioning his MH, as they may feel (unbderstandably) that if he already has a SW, that SW would be taking any necessary safeguarding steps.

That should at least get him assessed.

However, you should also be prepared for them to say that he has capacity to make his own decisions about how he chooses to live and that his choice is to live in squalor.

It's shocking that services are so stretched that this can go on, but I'm afraid that's the world we live in. Thirteen years ago, I worked in housing related support and that project often went in and worked with people like this young man. Because of cuts, that sort of work is no longer included in the contract.

The "safety net" is now so stretched that people fall through it, all the time.

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