Difficult parent, disabled sibling

[SadMary]

Looking for my tribe, it was suggested I try here ---- Sorry this is so long. You'll have heard this sort of story before.

My mum is ancient. She's also as stubborn as a whole herd of mules. She is in better health than most people of her age but nonetheless, you can't reach 90+ without something creaking and realistically she is not now coping as well as she used to.

My brother lives with her; "moderately severe autism" is his diagnosis. He could work, but he's had an entire lifetime of being infantilised and institutionalised by my mother (he has no friends, no job, no life outside her house). Basically she actively refuses to let him learn how to look after himself, and with his diagnosis he lacks the "oomph" to take matters into his own hands. Another sibling lives close by, used to do a fair bit with and for my mother, but they've fallen out and contact has been dramatically reduced. I live 5 hours away so have minimal physical input, have never got on with the other sibling but have regular superficial text contact with my brother. The relationship between my mother and I has never been easy - there's often a reason why family members flee the nest.

My father is long dead and my mother has no other family, just her offspring.

My mother really does need help, but denies this and gets very angry when it's suggested or offered. She has become very isolated for various valid reasons; my brother is even more so. She does get out, but she maximises every problem and brushes aside every suggestion and solution. I'm sure there's an element of depression, but that's on top of a very negative personality in the first place (she has said that she can see elements of autism in herself and I agree). She has enough money to pay for some help but is really angry that this was suggested (full AA -- so even the govt agrees that she needs help, but no, SHE IS NOT INCAPABLE - her capitals!)

She lives with my brother in her own place (which is a stinking midden, partly I'm sure due to the fact that she's got significant visual loss so can't see what needs to be done - but we had a massive row when I tried to push the idea of a cleaner). I know she has a will, but she point blank refuses to countenance PoA.

My biggest worry is about what's going to happen in the future. For years she's chosen to ignore what I say, then deafness intervened so she couldn't hear what I said, but I'm pretty sure that memory loss is now creeping in too.

I have decided that, for the sake of my own mental health, I have to withdraw from trying to help. I think my other sibling feels the same. I don't like the idea of leaving an elderly woman struggling, but she refuses to acknowledge that she needs help and pushing the subject has caused a major schism so what can I do? And if she loses capacity, things will be more difficult without a PoA but we will have to manage. (I'm a bit kind of sad that if that happens, she won't even understand if I say I Told You So! - hey, you got to take the grim laughs where you can find them, right?)

But my brother. What will happen to him? Because he's able bodied, it's sometimes assumed he's the carer but really it's 50:50 between them and if either falls, the other will collapse. If, without a PoA, my mother is incapacitated and household bills can't be paid, what will happen? If, or when, dementia supervenes, will he even notice? At least, if she needs residential care in the future, I don't think the roof can be taken from over his head as his diagnosis makes him a vulnerable adult too -- I pray I'm right about that.

Sorry for this long splurge. There's so many years of problems to try to put into one post. I just need some people who may have been in similar situations to tell me that somehow, it will all be ok :(

If he has moderately severe autism then yes he would be considered a vulnerable adult.

In the event that your mother dies/has an accident is unable to come home then usually someone alerts social services. They will do an assessment of him and his care needs.

Depending on the results of that assessment he would be offered either carers or a place in a care home. I presume he has no money.

Are you aware of what your mother's will says? If he inherits the house then he may have assets that mean he is expected to pay for care.

My brother has no money (that I'm aware of) because he was scammed out of what he had :(. (He's been scammed financially more than once, and I'd like to help him set up a PoA too but my mother seems to have suggested to him that it's a way for people to get hold of your money, so that's going nowhere).

Thankfully my mother has a FA and does take advice from him, and he seems a decent chap - she gave permission (before the recent schism) for us to speak. He's tried to get her to think about PoA too. That aside, my brother's share of the estate has been put into a trust with the hope, or aim, of it not interfering with benefits. I don't know who the trust executor is- possibly the FA.

He would be best living in some sort of supported living arrangement, not a care home of any nature.

Someone alerting social services sounds great, but who? When my mother broke a bone (fell on ice), she simply told the hospital that she lived wth her adult son so it was assumed that he would do everything! If she doesn't, or can't, tell someone in an emergency,and he doesn't know to do so, then what? It doesn't help that she and he are registered with different GP surgeries --- another point of which my advice has fallen on wilfully deaf ears. Oh my head spins with this, and I'm probably (hopefully) catastrophising.

She told me this year that my brother "looks perfectly normal, you'd never know there was anything wrong!" But if you saw him coming down the street, avoiding all eye contact, pulling weird facial expressions, with massively defensive body posture and stimming as he comes, you'd be daft not to know. But my mother isn't defending him, she's just become so isolated and habituated to the situation that I genuinely think she doesn't see it. Same with the filth and smell in the house.

Can you get in touch with SS now? Surely he needs recording as a vulnerable adult and they can start to support him and your mum. Other posters will know more but I'm sure SS can do a welfare review.

I’m sorry @SadMary . I’m in a similar position and struggling to know what my obligations are. I’m really happy to investigate/arrange help, but they’re just not having it. I am trying to make them understand that getting help is not just for them, it’s to help those around them too. It’s impossible. I would also like to hear from people who’ve been through this, what happened and how you coped with it.

Oh, @Middleware , it's so difficult, isn't it.

If it were just my mother being terminally stubborn, I think I could accept it better, but her actions continue to impinge on my brother and I find that difficult to accept, because it's not his fault.

I've told her that she needs to look at future protection for brother, but They Don't Need Help (on repeat). It's like banging my head against a wall, only worse.

If he had a physical disability it would be easier because you can see that. But I've heard too many people assume that an able bodied man doesn't need support and help. And she feeds that narrative.

We need a "distressed daughter's club", don't we!

Is your brother not claiming any out of work benefits or disability benefits ? if not then getting these in place would be the first port of call. At least then he would be able to contribute to the household bills or take them over if your mum had to go into care.

He receives basic benefits of some kind, I don't know which. He won't talk about money. He does give her some cash from this, but historically it's not been a realistic amount.

A SW from the RNIB has been involved in helping them both claim benefits, but I don't know what exactly. I do know that they don't qualify for any means tested benefits, but that's mostly due to my mother's pensions.

If my mother were incapacitated for any length of time, I am certain that the house would swallow more money than my brother has individually. Plus I don't think he's ever paid a bill in his life, and she won't let him learn (she's blocked attempts to teach him some basic adulting skills).

You can calll SS yourself and explain the situation and how worried you are.

I'm with you on this one OP - my DM is late 70s, almost crippled with arthritis - lives with my DB (late 30s) who has Downs Syndrome. There's lots of joking from her about "oh, we muddle on!" and she doesn't see/ ignores the fact that the house is filthy, they only get by with a lot of help from nearby family, if either of them was ill the other one wouldn't cope, etc etc. Her cousin tried to tactfully suggest having a cleaner in for a couple of hours a week, DM almost bit her head off saying "We don't NEED a cleaner" - er, yes you do DM

Honestly, I don't know the answer - she will only look into solutions when things get to absolute crisis point they stayed in our old house, a mid-terrace townhouse which was too big for them to cope with and not accessible, for far too long. She was almost at the point of not being able to get in and out of it at all before she'd contemplate moving! They now have a ground floor flat which is much better and would be easy to look after if only she'd arrange some regular help...

"she will only look into solutions when things get to absolute crisis point" -- Yep, and the problem there is that if it's a major crisis, she may not be in a position to look into solutions.

I have tried to hard to get her to think about taking steps NOW to avoid or mitigate problems in the future. I have told her several times (truthfully) that in my experience, those who retain their independence for longest tend to be those who happily recognise that they need help and accept it before problems become insurmountable.

I was a medical doctor. I worked with elderly folk for 30+ years. I know what I'm talking about --- but apparently, according to her, I don't.

Have I missed your brother's age? Hopefully he is over 60. Presumably he has never needed his own social worker or contacted a social worker as your DM has been in charge?
But as others have suggested your first port of call is the adult social work team in their area to say that you are concerned for the welfare of two separate vulnerable individuals.
It's very likely that your Dm will become an even more rigid version of her difficult self. Let the social work team pick them up when things worsen but at least you have put them on the SW radar.
If you have tried to be pro-active and your help has been refused, you can do no more. You needn't feel guilty. Hold strong. I wouldn't necessarily reveal to the SW team your former role. It is not relevant to their care.
Going forward, without POA things will be awkward, but as your brother is over 60, he will be in a stronger position to be helped by SW.

@SadMary yes, completely understand about it possibly being too late at crisis point - for example, my DM had a specific type of shoes specially made for her, to allow for her arthritis (and various other medical issues). We suggested she had two made - no no, only need one, you can only wear one pair at a time, etc etc. Now the shoes are breaking as she wears them day in, day out (to be fair, they've lasted a couple of years!), the company she used previously don't make them any more, and she's buried her head in the sand rather than look for another. If any of us offer to help her, perhaps send her links to websites we think might be useful, we get our heads bitten off as SHE CAN MANAGE and SHE WILL DO IT WHEN SHE'S GOT TIME. And so it goes on, till her shoes break and she is completely stuck, and then she will expect us to scramble round and help her sort something out ASAP

@Mum5net for my DM, we have tried sending various helpful links to council websites, social care, charities etc, all of which could help. She will have none of it I honestly think it will take one of them becoming completely incapacitated before she would look into any assistance, whereas if she looked into it now they could probably put something into place to make their lives easier. But I know she just won't!

@PosyStarling My comments are based on 15 years of trying to support three parents / in laws all now gone... all three were as you and @SadMary describe but throw in worsening / full blown Alzheimer's and dementia...
They won't take advice.
They won't care if they run you ragged.
Their opinion counts more than yours
You will never know as much as they do as they are the parent...
Your help is bordering on interference.
My tip is to learn fast that these are the rules of engagement until there is a full blown emergency which you quietly predicted.
Sending support and huge amounts of black humour

PS @PosyStarling They will never contact any of these organisations.

In then end you will flag them to SW, the DVLA, their Drs /whomever when the wheels are literally falling off..
However, credit where credit is due, my DParents did manage to get themselves on the 'Emergency At Risk' list of their social work department by their own initiatives. 😀

@Mum5net , thank you, black humour is badly needed with this situation! All of what you say is true though. Those rules of engagement - it's just that she has already dragged my brother down with her and I'm afraid there's still potentially a long way to go before she, or they, hit the concrete wall at 200mph in a dire emergency.

And my brother is quite likely to fail to recognize any such emergency, then fail to tell anyone. Shit shit shit. (Like when my mum fell on ice and sustained a fracture, he didn't think to let me know. I found out by chance several days later when I made my weekly phone call for a chat).

Oh, and he's not going to be 60 for a few years yet. I strongly suspect my mother will be quite doolally before then.

Definitely call their LA to report a vulnerable adult at risk. There is a lot more focus on 'self neglect' as a care need these days. I think they would take your report seriously.

It is likely that your mum's main home would be disregarded from the financial assessment due to your brother living there, either by being classed as her carer, or from being a vulnerable adult himself. As long as neither of them have another property.

Oh my goodness, I am so sorry that you are trying to cope with this! I would say let social services know what is happening. They may not be able to do a lot with your mother if she is not at a point of being mentally incapable, but they could do an assessment of your brother's needs, without your mother's consent if they feel he is at risk, or would be if your mother's health failed.

We had a similar situation with my gran. She was narcissistic,but we couldn't cut ties with her as my uncle,who was severely physically and mentally handicapped lived with her. He was registered blind and deaf,non verbal,with cerebral palsy,spina bifida,and autism. If anything had happened to my gran,he wouldn't have known what to do,how to alert anyone,or get help.

When she eventually was diagnosed with a brain tumour,after attacking my mum and beating her around the head with a walking stick,my uncle was found a care home by social services,and was quite happy there for many years.

I would alert social services now. At least then,if your mum gets taken into hospital or has a crisis, someone will know that your brother is vulnerable and unable to cope alone. And vice versa.
I hope that things get easier for you. It was actually easier for us once they were both in different care homes,as despite the travelling,we knew that they were safe,clean,fed and being looked after.

Someone alerting social services sounds great, but who? There’s a scheme for rescuing pets if owner is taken into hospital. Probably involves wearing a bracelet or carrying a card. There must be something similar for people.

I think it would be helpful to adult social to be aware of the situation, so even they don't take immediate action, they will be in the system in the event something happens. In terms of your brother, he will be classified as vulnerable adult who may have care support needs and if your mum is unable to manage her care needs, she may be potentially put him at risk. Who does the cooking and cleaning?

Your mum as a capaciated adult has the right to decline care and support for herself providing there are no significant risks of harm to her or others.

However the control she has over your brother and his choices may be of interest to adult social care and they definitely would like to know in advance if there is a chance they will need to accommodate him or provide care in potentially crisis situation.

You can refer to adult social care for your brother if you have concerns for his welfare even if your mum doesn't consent.

Look at the LA website, ours has a single point of contact for vulnerable adults.

I would flag them up to the LA, what they then do is up to them.

We have a similar situation in our family, it's a bit shit really.

I don't want to say "yes, but", - but - well, yes, BUT -

If it were as simple as contacting SS and a magic wand being waved, I'd have done it a while back.

But firstly, it will be obvious to everyone that I've been the whistle blower, and I've had a tough time already this year at the hands (tongue) of my mother, it affected my MH and relationships with loved ones, and I really can't face putting myself deeper into that mire.

Secondly, my mother will refuse any help unless she asks for it. And she's the gatekeeper for my brother.

Thirdly, they have had some SW involvement, but through a medical charity, not SS. Said SW helped them fill in claim forms for AA etc (I'd been telling my mother for at least a year that we could do this, but she had refused and was adamant that she didn't need it and wouldn't be eligible - she's actually been awarded highest level). I can't contact this SW, and my mother's been discharged from hospital now, so a SS referral would be starting afresh rather than an easy "just checking to see how you are!"

Fourthly, it seems to me that my brother might not be 100% happy with the situation but I'm not certain. But he has never known different, and can't afford to bite the hand that feeds him. If he were approached individually I think he would turn them away. He was present at the Big Argument and seemed quite scared. He's said to me, "I know I'm useless" - does our mother tell him that? I've tried to stress to him that on the contrary, he is my eyes and ears in the household and has an important role to play in alerting people if neccessary. He is virtually no help at all in the house (I blame my mother, she will not ask or even teach him how to do stuff, and has actively blocked him trying to learn to operate appliances) and with fairly severe autism he can't second guess what someone else's needs are.

Fifthly, I pushed for a formal diagnosis for my brother only a few years ago, hoping that it would afford him some protection, but nonetheless there is still the idea from other agencies that an able-bodied adult man should be my mother's carer, not the other way around (and in fact I think that the SW enabled him to get carer's allowance, which I think he hands over to my mother). I've contacted my mother's GP and asked them to annotate her notes to show that there are 2 vulnerable adults in the house, not 1, and that my brother cannot care for my mother (CA notwithstanding!)

Who cleans? No-one, and it shows. Who cooks? My mother. Shopping? There are good local shops within easy walking distance, so they go together. I did set up online shopping but my mother took against that for some reason and has cancelled it.

I think that if there is a sudden emergency, it will actually be easier (a broken hip, say, or a stroke); how awful to wish for that sort of situation. What will be much more difficult is a slow slide into decrepitude and dementia, when it's likely that things will get pretty awful before they're spotted.

You can't change things, you can't fix things.

Like watching a slow car crash.