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Elderly parents

Difficult parent, disabled sibling

33 replies

SadMary · 25/09/2024 22:05

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 :(

OP posts:
SadMary · 25/09/2024 23:31

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).

OP posts:
Miley1967 · 25/09/2024 23:20

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.

SadMary · 25/09/2024 23:14

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!

OP posts:
Middleware · 25/09/2024 22:55

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.

Hercisback1 · 25/09/2024 22:42

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.

SadMary · 25/09/2024 22:26

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.

OP posts:
SadMary · 25/09/2024 22:22

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.

OP posts:
Octavia64 · 25/09/2024 22:11

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.