To feel suffocated?

[RayOfHope13]

So I don't really know where to start and don't know if AIBU is the right place to post, it's such a difficult situation, and I feel like I am totally alone.
My sister has severe autism, anxiety, OCD, obsessive controlling behaviour, learning disabilities. She is 33 and her controlling behaviour, anxiety and OCD has become progressively worse over the years.
I don't even know how to describe it, I literally couldn't put into words how bad her need to control is. She lives with my DM who herself has health issues but is her 24/7 carer. By 24/7 I literally mean she can't sit in a room on her own without being ordered around by my DS. She has an obsession with controlling her, and won't let my DM sit for five minutes without shouting more demands at her, and believe me half the demands she shouts at her she is perfectly capable of doing herself.
She won't leave the sofa, my DM has just had an operation and she has limited mobility but still has to come straight to her when she shouts.
When I say come straight to her I literally mean she has to drop whatever she is doing/ and go straight to her because she screams the house down and is incapable of waiting one minute otherwise she is fuming and makes it worse for my DM.
She also has intense jealously if anyone else speaks to my DM, we can no longer call her in the evenings because it's absolutely impossible to have a conversation with her because my DS is screaming at her to hang up in the background.
I feel like there is no support out there, we have searched for so long, I even contacted numerous private specialist psychiatrists who have told me they can't help with her because it is "beyond their capabilities".
She is with a disability psychiatrist but doesn't understand how serious it is, she just thinks we exaggerate and says it's minor OCD because of her autism. I have OCD, this is not minor OCD.
I won't begin to explain about her OCD or anxiety stuff because this post is already too long, and I wanted to explain about the controlling obsession because I wanted to see if anyone out there has any sort of experience with this because I am at a loss and can't find anything online.
I don't know why I'm posting this, I suppose it's because there isn't anyone I can speak to you and lately I've been worried and fearing for the future, if God forbid anything happened, although there are 5 siblings I would be the one to care for her, I have promised my DM because her biggest fear is her ending up in a home and the other siblings wouldn't take her in.
I guess recently I've been scared because she is becoming so bad I fear it will be completely unmanageable, and she will start controlling me to that extent and I can't live like that, she already tries and the only way I can describe how I'm feeling, as awful as it sounds... I feel suffocated. There is so much pressure on me all the time, and there is already no help and I feel.... scared.

Sorry this was so long, and thank you for reading, even if only one sentence.

I don't have any advice but YANBU.

I'd be thinking about hiding a camera to be able to document the abuse.

Oh, and I do hope you are lying to your mother about what would happen to your sister - nobody has to put up with that for any reason, and if she genuinely cannot cope without abusing relatives, she clearly belongs somewhere specialised.

Could your sister not go into supported living? Give your mum a break? She might be able to cope with the demands for now, but what happens 5-10 years down the line? Ask social services for help.

I hear you OP as my sister is similar (although not as severe). I have little advice, but what you’re feeling is natural. I would echo a previous poster; assisted living ?

You need to tell your mum you won't have your sister to live with you. Then you both need to search for supported living places for her. You cannot let your mother carry in suffering like this,

OP, this is appalling. You must refuse to have your sister living with you under any circumstances, not negotiable, not ever. Don’t give an inch on that. In a plane, you’re told to put on your own lifejacket before trying to help anyone else - that’s what you need to do here.

Meanwhile, how to rescue your poor mother? I’m hoping many well qualified MNers will be here soon. Meanwhile I will try looking for resources online.

Elder abuse is a phrase I’ve heard recently. I’ll start looking there.

I’m not in any way blaming your sister, as she has MH problems. But I wonder if living with your kind and helpful DM makes her behaviour worse, as she can get away with anything. Perhaps a professional setting, some kind of care home, would be better?

Your family seems to believe that it's ok to sacrifice your lives for the wellbeing of another, it's not. No one should ever have asked you to do caring, it's so unreasonable and unfair to put that pressure on you.

Has it not struck your family that they're really NOT helping in the long run here, often the better (more sustainable) thing is to get outside professional help!

Care by family in the home is often more harmful in the long run because it's just not sustainable if they're not coping.

Your sister is running your mum into the ground, what happens when she's no longer around - you're supposed to be run into the ground next..?

What then? When is enough?

She clearly needs adult social care and it will need to be obtained eventually if she can't function independently. The real question here is how much your mum and you will have lost before then.

Thinking of you. Some of the things you described are like one of my dc. 🤗🤗

Thank you all for reading and your replies, I've felt so anxious and down and just knowing someone out there is listening, it's a weight off my shoulders to let it out at least.
And thank you @Thinkingabout1t for having a look for me, you don't know how much I appreciate it, I know it doesn't concern anyone else and to offer advice is so kind.
@Strongmummy although I'm not happy to hear someone else is going through similar, it is a comfort knowing we are not totally alone so thank you.

Regarding the assisted living- this has always been my mothers fear, that she goes to assisted living, which is why I always said I would take her in. But lately I'm scared it can't be an option because of the extreme circumstances we are living in at the moment.

My DM was diagnosed with lung cancer three years ago, she gets routine checks to make sure she is still clear thank God, but I am so scared for the future.

I know deep down assisted living is the best option, but I feel so sad and down that now it's even in my head, whereas I've always promised my mum I wouldn't let her ever go there, but now I'm frightened I won't be able to cope, as I am already suffering. I have been on AD since my mum was diagnosed, and I'm still feeling suffocated and anxious and scared.

I am taking in everything everyone has posted, I know you are all right.

Thank you for sharing that @RoseMartha although I'm sorry you have difficulties as well, it's comforting knowing we are not alone.

Also we have contacted social services twice, had one phone call then never heard back.

I agree too re assisted living. Does you mum
Want you to sacrifice your life for your sister?
Your sister can get the right care and you can live your life without guilt (don’t let your DM’s guilt fall on your shoulders).

Dear RayOfHope, I’ve found an organisation called Action on Elder Abuse
www.elderabuse.org.uk
Elder abuse hotline : 080 8808 8141
Their site says « we only deal with issues of abuse. That's all we do, so we carry a knowledge and an expertise that is not freely available anywhere else.»

That should be a useful place to start.

And I know you’ve tried social services and they didn’t ring back, and they are likely to be very overstretched. But it’s worth trying again.

To find local social services
www.nhs.uk/service-search/other-services/Local-Authority-Adult-Social-Care/LocationSearch/1918

I would try Elder Abuse first. From my reading of their site, it doesn’t need to be your mum who rings - you can contact them on her behalf.

I’m hoping if you can get the title of this thread changed to something like «Please help me rescue my mother», you will get MNers who have experience of your problem, or professional knowledge.
And perhaps post in the Mental health or Relationships section rather than AIBU? Though i see some people use AIBU to seek serious a dvice because it’s a busy section.
I don’t know how to make these changes but I’m hoping someone else can help!
I have found a support email: [email protected]

Best of luck with this. Xx