My brother has learning disabilities and lives in supported living. Since my mother passed away in 2016 my brother has severe self neglect problems. Doesn't shower, change clothes, eat healthily (he is diabetic) his flat is appalling with extreme hoarding and hygiene. Not washing, brushing his teeth etc He won't allow anybody to come in and help most of the time and lives on a diet of anything with chips or pizza. From being an active social person he turned into a recluse of not going out at all and just goes through a mountain of puzzle books every day which he says is his hobby. For many months I tried to get him help and the staff who support him said they cannot do anything as he has capacity.
We eventually managed to get some outside help from a community nurse who was going out to see him and eventually we started to make small progress. His hair and beard were so long we didn't recognise him. I managed to get a mobile hairdresser out which he consented to.
He can't read or write. Has learning difficulties from birth, asperges and autism.My mother was the person who made sure he was clean, well dressed, are well etc etc. Since going into supported living he's declined and my mother and father fought to try and get him somewhere where it's not supported as he doesn't engage at all and they were worried what woukd happen to him. Now they're not around he's got worse and the fact he's supposed to be living somewhere and in a style which would guarantee peace of mind it's far the opposite. My poor mum would be horrified.
I took over the fight but I am not getting anywhere. I thought I was but he's refusing to go out or do anything and now refuses information to be passed onto his family. I'm in despair over all this as social services have said there us nothing they can do only keep encouraging my brother which is not working. He's now 61 and has no quality of life apart from his puzzle books and used to be completely the opposite. He also says he's happy there which I doubt as he just stays in his room occasionally going downstairs to speak to staff. He is on antidepressants aswell as other medication.
He has had two falls. One fall was in his flat and he wasn't discovered till hours later. Another fall was while he was out which after he didn't go out any more.
His last visit to hospital he didn't have an escort and I only found out hours later. When I got there he was in a right state and so frightened. I stayed with him for two days until his admission onto a ward. No one visited him from the place where he lives and we had to ask for provisions to be bought to him as they had sent him to hospital without any clothes etc. He had a hospital nightgown on as he'd had a toilet accident. The nurses were very concerned as he was so frightened and vulnerable and were appalled with his caregivers
The previous admission a few years ago they didn't even contact his family.
How can this be care??? I don't understand how my brother went from a clean, presentable outgoing human being to how he is today. It's appalling that a care giver can be not caring.
They just tell me every time that he has capacity when I look at him as my little brother who never grew up and I always has to defend as people can be heartless. It makes me so sad.
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You have to speak to doctor, social worker and boss of carers. In email and in person. This should also include each of them in each others conversation and if possible setup meeting on zoom. It is by pushing them towards their responsibility and goals will you get somewhere. Most importantly include your brother in these meetings, even if he says nothing. He will be centre of their care plan and agreement is necessary or acknowledgment
The consent is a problem. Does your brother allow you in? are you close enough to visit?
How much are you able to take on?
I would consider raising safeguarding concerns.
Ask for him to be under the disability team with a learning disability social worker.
Age concern may help.
Who looks after his finances?
Would he use an advocate- voice ability charity
Do you have / want LPA
There is a great deal to unpick here. I can't offer much advice without specific understanding.
The care system is hopeless. In this situation the "support workers" are there to support in activities he chooses. As this is none they do nothing. It is so wrong, whether 20 or 60 years old our loved ones deserve better, but that is the system and they don't care.
Therapeutic support is needed as he sounds depressed.
I wish you all the best in getting him better care and support.
Would he be better placed in an elderly residential home? He will still self isolate in his room but at least staff are there 24 hours a day and he will have meals made and assistance with medication and personal care. I have workedinbotg LD residential(challenging behaviour) and elderly care and I have known people with LD move to elderly care once they are older. Staff in elderly care then need support from the local LD team to help them care plan as people's needs are different. It's not great but safer than being by himself
That's ideally what we want for him but social services don't agree. They keep saying he doesn't want to move. We would be so less stressed and of course he would be more comfortable and healthy in this setting.
Just thinking out loud below... I'm also a sibling like you... but also not qualified to advise... maybe run the below past a Mencap advisor first if any if it seems wise??
All providers are meant to have well advertised "how to complain" procedures... Before complaining , I'd ask for a written account of the worst incident (they have to keep records, or they're really in trouble)... It would be interesting what a senior staff member would put in writing about the hospital/neglect/fear aspects... "He has capacity" doesn't work for safeguarding issues.
A lot of those you will encounter will make not giving an answer into an art form... It's right to get past those barriers, but takes some will and tactics.
I'd also ask Mencap etc about lpa (lasting power of attorney)... If your brother feels like you're the one in his corner (and well done for all you do!!!!) then he might agree, which would help a lot. Court of protection is extreme, but an option if danger is high and no other option remains. Social services (underfunded social services) always need some persistence to get action, but if they're paying the bill they are the ones with the power to demand better care/the obligation to prevent injury. Sometimes a different provider is the only true answer.
Finally, having been in something a bit similar, sometimes it comes down to individual staff, so if there are one or two good ones you can talk to or rely on, it's worth getting friendly and seeing if you can find out more or get them to help you bridge the gaps.
Some things are indeed his choice, so I'd personally not fight the "he stays in and does puzzles" battle 1st... Maybe later... , but the worst things you mention you'd be right to fight for improvements to them, and more likely to be able to demand action on them as a starting point.
Get a wiser advisor than me, but you're right to want better and worth hunting for it. Good luck
I wanted the flat and his diet addressed first but they seem more concerned about getting him out. I'm not too worried about the puzzle bit as he's at least keeping his mind active. Thank you.
Oh my goodness this is such a sad story to read. I cannot imagine how you must feel seeing your brother living this way. Can you get another assessment of his capacity maybe by approaching his GP in the first instance? He sounds incredibly vulnerable and is clearly in need of support around his mental health. At the very least surely Social Services should be reviewing his case.
I really hope you can get some help and support for him as he’s clearly demonstrating that he is in need and he’s a vulnerable person.
I'm so sad to hear this, it breaks my heart but totally get it and it's so wrong. I knew nothing about this capacity farce until my son moved into supported living 10 years ago. He has severe learning disability and ADHD. He was also assumed as having full capacity based on how he appears, which is someone who is very chatty and has some common sense. I found it so frustrating that he'd lived with me till he was 40, he's 50 now, and I knew he had no capacity for finance, time, managing his health couldn't read or write, can’t travel independently , lacked all the basic skills needed to survive in this world which I supported him with. I kept telling the staff all this but was ignored. I eventually contacted Social Services and got a social worker allocated. She placed him in temporary accommodation and organised to have various capacity tests done which confirmed he didn’t have capacity for these things. It's a long process but getting there and waiting to have best interests meeting to put all in place where he needs support and hopefully placed in his forever home. Ĥe like your brother lives in chaos, room is a mess, no organisation skills he doesn't like me to visit because of this.
I have power of attorney for finance and for health and well-being for my son, so I have control of his finances. Didn’t want to go down the route of deputyship, my son did understand some of POA so was able to agree to that.
It is a minefield and especially when your brother is not engaging makes it more difficult. It feels like you need to start from scratch and contacting SS. Has he had capacity tests done to prove he has capacity as they say or are they just assuming because of how he presents himself as they did with my son ? Do you believe he doesn’t have capacity? Your brother is older than my son but remember things were so different then and they were literally put on the back burner., if they were born today they would be assessed accordingly. Let's not forget he will be paying for this non existent support. My son pays £620 per month. If you believe your brother doesn't have capacity for certain things I would ask for capacity tests to be done, as because of his age I would presume they haven’t been done. Even when my son moved ten years ago I remember at the initial assessment the manager of care company said to me " we won’t bother with Capacity Assessments as it makes life difficult" ( he obviously meant for the staff) If they had been done then we wouldn't be in this position now.
I'm so sorry your having to deal with this now, another issue you might have is not having any power to act on your brothers behalf. Contact Mencap and they might be able to help. Good luck
Hi we have issues of self care and hoarding (poor environment generally).
Our daughter has carers going in to help with the basics; shopping, tidying, minor cleaning, food prep etc., however, they don't have the time or the inclination to get her to declutter. We have chosen to have an additional paid carer go in once a fortnight specifically to do haircuts and a full on declutter and tidy. This works well as she reports directly to us and can be tasked directly on matters of importance. It does mean and extra £40 fortnightly but it's worth it for peace of mind.
I know your brother doesn't want any of this - neither did our daughter. We had to approach it very gently. Starting off by introducing the carer as a friend with shared interests. Gradually she introduced the idea of making the flat a nicer place to live in. I had tried so many times but it's easier to accept I think if it's not a family member with all the complications that brings.
Maybe if you did try this you could tell your brother that you know someone who really likes puzzles and wants to see his puzzle books. Gradually he could build trust in them and be more receptive to changes that will benefit him - decluttering, self care, going out.
We've learned over the years that we have to accept that our daughter doesn't worry or isn't interested in the same things that we are and that what makes her happy isn't what makes us happy. Pushing too hard on these things is counter productive and can make her anxious for us to come to her home.
Some things we have to let go. We just focus on the most important things first.
Sometimes softly, softly really does catchy monkey.
Thank you for your replies. We asked about another capacity test to be done but they are again saying he has capacity. My brother now says that he doesn't want staff to give us information and sadly they have to abide by this. They have not really tried over the years and I have contacted various people and they have said that if my brother chooses to live this way there's nothing they can do. It's taken us a long time for him to agree to have blood sugar checked as he refused. A community nurse does it and has gained trust with my brother. The support workers keep coming and going so he doesn't get a chance to get a relationship with them and because he is a big guy and can get confrontational they don't hassle him and leave him. It's so sad to see him like this and breaks my heart. He's circumstances have changed drastically.
What is LAPD please?
Finances I am still trying to find out who is responsible. I guess my brother has as he has capacity but he has no concept of money really. I know they deal with his bills etc.
I am so depressed with all this as it's constantly on my mind.
He's a different person altogether.
They have said they've exhausted all avenues and will try for a psychiatric evaluation.
I even suggested that we would pay someone to clean his flat it's in the house where other clients live also. My brother agreed, they didn't and now he says he doesn't want it to be done. He gets agitated if someone is there too long.he agreed they could clean as long as he wasn't there. Nothing has been done.
It is awful. I took pictures but they say it's OK for him to live like this as he has capacity.
It breaks my heart. Thank you for your kind comments.
The inspection on his place hasn't been done since 2017 and the website shows lovely pictures of rooms etc and gives an ideal picture. It is rated as good from 2017.
I think you mean LPA which is Lasting power of attorney. It sounds like the Local Authority or his support service look after his finances it's worth asking. Your mum may have passed it onto them. I would definitely contact Mencap by email, putting everything you mention in your post and see what their thoughts are. I would be asking for proof of capacity tests but the problem is you don't have any power just now but it may be possible. Please contact Mencap they will get back to you and explain. I had an issue regarding accessing some info, I was put in touch with one of their support team and allowed to speak on the phone to them at certain times agreed by both of us, or via email so your dealing with the same person, I found it very helpful. Take care and keep us updated x
My daughter has learning difficulties, plus Myotonic Dystrophy type 1. She is (was) a hoarder and also didn't keep herself clean. Now she lives in an Anchor Extra Care Home. Despite only being 53 and the minimum age is 55 they made an exception. She has her own flat but her rent includes a 3 course meal at lunchtime. Through Social Services it has been arranged that she has showers 3 times a week and a Carer at teatime to make her a sandwich and cup of tea. She doesn't mix with the other residents as she prefers to stay in her flat watching TV all day. Our relatives definitely listen to "outsiders" more than family members. We also have LPA's for Finance and Health and wellbeing. I worry that she is lonely but we have to switch off from expecting them to behave like a normal person does. Is this a possible route for your brother?
I am so sorry to read your story and completely empathise with your position. I too have a brother with Down’s syndrome who I have spent so much time supporting - happily as I love him dearly. But i have been caught in a nightmare for the last couple of years.
My older brother and I took out LPAs for finance and health after our parents died. My older brother then died a few years ago leaving me a sole attorney. The certificate provider was my brothers GP who I believed was a reliable independent person.
A couple of years ago I received a letter from OPG to say I was being investigated about claims I was restricting my brothers access to his money. I was not given any details or evidence about the claims so responded and was confident that would be the end of the matter. I have just now received a response that the case is being referred to the court of protection as the investigation has identified another matter ie my brother lacked capacity to make the LPAs and should have a deputyship. He has moderate Down’s syndrome and I do not have the resources to employ someone to challenge the complexities of what he can and cannot understand.
The OPG papers also show the claims are based on statements by one member of staff at my brother’s home that are completely untrue and do not have any evidence to substantiate them.
My brother was moved from this home last year due to safeguarding concerns raised by a community nurse.
Sorry for such a long email but I hope others can learn from my story.
My advice is do get your GP involved. Raise safeguarding concerns. Make sure you get a proper capacity assessment by someone who is qualified to do this. It might not be a GP. Keep records of all your communications.
I agree with others regarding getting your brother's capacity assessed. Regarding them still saying that he has capacity, who has ssid this? If it's the care staff, I would go above them to social services. If they won't listen go to the council Safeguarding team. Good luck.
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Poor care...what next
Sorry menCap but you couldn't help me and you didn't listen again sticking up for the authorities again because they know best no they don't
Considering supported living for my 27 year old son 
