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Hello I'm robert been providing care for my autistic brother since before I was an adult ( I'm 38) and been there every day after and literally the last 14 years with barley any breaks maybe twice a year I get out for a weekend.. my brother is low functioning and needs 24 / 7 supervision.


As stressful as it is taking care of him my biggest issue is our father who doesn't think care providing is a real job and belittles everything about me being a care provider. He has a history of serious anger issues. And is the reason I need to be there for my brother. So I will never leave my brother with him. He has no patience or attention to details when it comes to my brother. My brother has a history of wandering and needs to be watched and cared for all day and night.


They only time im away from my brother is when hes at school. And during that time I try to catch up on sleep and get things done ar the house. Over the years my brother gets up at night and gets in the kitchen etc or could leave. So I stay up most nights. But my father expects me to have some other job or something. He treats me so bad and his attitude is terrible. It's so bad we haven't had a shared meal in 14 years probably longer even during holidays..he only talks to me when hes telling me something I already know what to do or complain about nothing just to start a fight.


And on top of that I pay most of our house expenses all on my own. I pay rent, the gas, electric, cable, internet all on my own he refuses to contribute even when he gets money for my brother from SSI for his cost of living... I also have to buy my brothers daily necessities. Cause when I ask for bathroom or laundry soap he just ignores it and thinks if he doesn't give it to me it won't happen so I've just buy it all my self to save my self from a argument..


This week was a breaking point for me cause with the pandemic. My brothers sleeping schedule is not as it should so he has late nights. And after a night like that. When he came home I asked for the first time in 20 years if he can keep an eye on him and he just lashed out and started yelling and telling me to control his sleeping which he had no opinion on how I can.. my brother was already asleep btw.


Since the beginning he always threatened to put him in a facility, ( if didnt fall under his rule) which would only happen over my dead body. I feel so helpless and don't know how to deal with this any more. I can't live the next 20 years like my last, or I won't be alive to take care of my brother. I've neglected every aspect of my life. And that needs to change. So I'm here now finally telling my side. I dont know what to do. I've tried everything so far. He will never change..


Any words would help alot. Thank you for reading...


Robert

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If you don’t have a job, how do pay for everything?
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Bobby36 Jan 2021
Hello. Im a care provider for the state and i get paid by ihss. At the very beginning i was barely getting paid 30 hours a month even though it was 24/ 7 care but over the years i finally got whats called protective supervision which finally gave me the max 280 hours a month.
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I’m so sorry for your situation, Robert. Does your brother have a caseworker of any kind? Does he ever visit a doctor that you could speak to privately about the problems at your home? Or someone at his school?
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Bobby36 Jan 2021
Yes he does. He has a ihss case worker and an alta case worker i reached out to both and they basically said to go talk to a therapist . A few years ago i expressed all that in front of her she defended me and told he he should be proud etc. But once shes gone goes back to nomal
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I agree with Snoopy, have you thought about talking to someone outside of your family, a professional, who could help you?
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My, my what a difficult predicament you are in. And welcome to this forum. You will receive a lot of answers and a lot of questions for you so that the advice given will be from the wise and compassionate people on the forum. Does your brother have a social worker? Do you have legal POA and other documents that give you responsibility for your brother? How are you managing all the bill paying ? And yes you need respite care, a time to leave to take care of YOU!!! Between 35-40% of caregivers die before the person they take care of, did you know that? If your dad uses your brothers ssi, does he provide food, clothing or anything your brother needs? Doesnt sound like he does. You need some help. Perhaps go to social security office{make an appt) and ask them for a social worker to help you through this).
im sure very soon you will receive many helpful comments from the wonderful people on this forum. Vent here any time.... Liz
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Bobby36 Jan 2021
I get paid by the state from ihss. His case worker wasnt to helpful basically told us seek therapy. I did talk to the respite case worker. I have an aunt and a cousin. His own sister thats been they only ones there for us.. they are only ones that have been coming to keep me company and help with my brother alot. But he wont sign the papers for respite. A few years ago my aunt spoke up and defended me and tried to ask whats his issue. And of course he cut her off. And tried to ban them from my house even . But they still come over regardless and he doesnt even look at them.i have no rights when it comes to the house can have nothing in the garage etc. No I avoid him as much as i can. But he seeks out the littlest things that have nothing to do with my brother to torment me. Ive tried every way to see what his deep seeded issues his. But he doesn't say anything. Theres no words to describe him..

And to tell all. In 1999 when our family was intact. He beat my mother and threatened my mothers life. And cause he has guns the swat team came to our house and surrounded our house with guns. He got arrested. We lost our house the state took my brother and sister.. i was 17 so I stayed with my uncle. My mother ended up homeless .. after more than a year i lived with my dad and we finally got my brother and sister back in 2001 and i knew i couldn't leave them with him so i been here ever since. He told me if i ever let my siblings see our mother he would put him in a facility..

And the years leading up to my brothers conservative ship i told him i would even help pay for the lawyer fees but he ended up doing behind my back . So he has all the control over my brother and holds it over me for no reason. He truly thinks im a lazy pos and even tells my other family members that.

Thank you liz i also have Chickasaw blood
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Hi, Robert. Let me start by saying that your brother is lucky that he has someone who loves and cares for his welfare looking after him.
Secondly, you say you're 38 years old. That is too young for a person to be living like you are and having no life at all.
If I may speak plainly (and everyone here knows I do), your father sounds like a first-class a**hole. Talk to someone at your brother's school about what a terrible situation both of you have at home. They will help you. Don't be afraid to try and get guardianship/conservatorship over your brother. It would be the best thing for you both and his school will be able to guide and help you because there are many resources out there that you probably don't even know about.
If I may ask, how do you pay for all of your needs if you don't have outside employment and don't get paid to be your brother's caregiver? This question will come up with any professional person you talk to about your brother and the living situation at home. Please reach out to someone at his school or even his case worker through social services. If he's on disability then he has a case worker. Good luck.
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Bobby36 Jan 2021
I get paid from the state IHSS. And he goes to a day school that the respite care worker provided bit pretty much all they tell me is go seek therapy. I responded to some of your awnsers with other people if you can please read my responses. Thank you.. And a first class A hole is an understatement..lol. would appreciate any resource info. I just really want to take care of my brother and live comfortable in my own house and have handful days off a month. And getting treated with some dignity
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Robert, thanks so much for answering our questions, and sharing more about your story. You have been through hell, it seems. I’m so sorry! I must say your steadfast love and care for your brother is beautiful and an absolute inspiration. Despite everything that’s happened to you, you became a person of great compassion and integrity. You are definitely worthy of being treated with dignity and respect.

Just thinking aloud here, does your father still have guns? Does he threaten physical harm to you or your brother? Is he on parole or something like that? Is there anyone he answers to that could help?

Sorry for more questions!
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Bobby36 Jan 2021
Thank you. Hes not allowed to have guns no more. This happen 20 years ago. He had to do anger management and parenting classes.I beat him off my mom plenty of times. So the only harm and torment is mental... The only person that is around is his sister. Shes the only one in the family the sees him for whay he is . he cut off when we tried to see whats his real issue is. But she still comes and helps alot. But he dont even look at her she is my rock she would never let him stop her from seeing us. I tried talking to my uncles but no help at all. They dont see how he is. So they think its typical father son stuff i guess. Basically told me to suck it up... Its either eat his S#@t or leave. But i will never leave my brother with him ever..He can barley handle my brother for an hour. Has no patience or care to do what my brother needs
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Robert, I am so glad you at least have your aunt in your corner.

You mentioned therapy has been suggested to you, and I’m wondering if maybe it wouldn’t be a bad idea if you could get access to a therapist to talk this all out with him or her. Not because there is anything wrong with you, but just to have someone just concerned with YOU for a change.

I get the impression that the caseworkers and so on are so busy with dealing with the needs of your very disabled brother, and trying at the same time to cope with this horrible abusive parent terrorizing everyone that you get lost in the shuffle!
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Hi Robert, and welcome to the forum. First and foremost I too am touched by the love and devotion you have for your brother. Being a caregiver is not an easy job, and you are doing very well.

If I were in your position one of my first goals would be getting your massive jerk of a father out of the house. Is the lease in your name or your father's name? If you can't get your father to move then can you move with your brother? You should not be paying a cent for your father's room and board! Plus he's abusive, and living with a person like that will suck the life out of you. Get away from him.

That's what I want to talk about, how you can get out on your own with your brother and away from your toxic abusive father. If that is something that you want to do, you will get lots of good advice and support here along the way.
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Does your Dad have actual guardianship? If so, with his background I am surprised they gave it to him. If not, then Dad has no say in what your brother does. At 18 a person is emancipated. Those people with challenged children need to file for guardianship. Until then the State considers the person free to make their own decisions. If Dad does not have it, then you need to get it. Is Dad brothers payee for the SSI? If so, that money can only be spent on your brother. It should be going to a separate account.

Is brother getting Social Security Disability? Or Supplimental Insurance (SSI)? With SSI, I think Social Services can find brother housing with you as his caregiver. I would even check with them if he is getting SSD. There are HUD vouchers. My nephew goes through the State Disabilities for his housing voucher.

Are there Autistic organizations in your area? We have one locally called Independent Living. They may be able to help you and brother live independent from Dad. Because this is what you need to do. Get away. Because you may be able to get services you don't now receive. Is brother on Medicaid? Even if not, they do have in home services where maybe you can get an aide a few hrs a week to give you a break.

There are resources out there. You just need to know where to look. I would start with IHSS. Tell them you need to get you and brother out of the situation ur in. Have you ever thought that Dad is contributing to ur brothers behaviour. The tension in your house must be terrible. If IHSS is no help, try your County Disabilities. State Disabilities. Any services your brother receives will be based on his income not yours.

Your situation won't change until you change it, We have a beautiful Autistic Community not far from me. You may want to check with his school if there is anything like that near you. He may be happy in a place with like people. Activities and outings. Professionals to help with his care. You will then be able to build ur own life.
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Oh, Robert, your comment 'the only harm and torment is mental'---you need to realize that mental harm and torment leave scars that cannot be SEEN, but they are fully as awful as a beating.

Where do you live? I'm guessing the UK, due to some phrasing and terminology, so that makes it a little harder to know what to say.

Can you move out with you brother to a small apartment? Live completely away from dad? The stress you live with is wrong and cruel.

Look into any and every avenue of housing that could accommodate you and brother. Can you work with a SW or someone who knows the ins and outs of such things?

It would benefit you and brother if you cut ties 100% with dad and never look back.

Can you reach out to family for a little support? Obviously they're aware of this awful dynamic.

Perhaps your brother would be happier/safer in a community living environment. There is one right around the corner from me. Most of the residents go 'home' every other weekend, and they have 1 on 1 care, so they get out everyday, have help with their ADL's and seem to be very happy. No one person can possibly handle the entire care of a person with sever autism.

Glad you reached out to us. God Bless you, you are one special angel here on earth.
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