My autistic sister

I've made it no secret on here that I have a severely autistic sister; she can be very violent (just bit the hell out of my mom this past weekend and she still has a mark), non verbal (she babbles like a baby and can make some speech but its not very intelligable), cannot work, has a very strict routine she needs to abide by and then MAYBE she won't bite/hit/scratch w/e, at her group home she has one on one staff, and the staff is always trying to get my parents to take her home for a visit (she's so difficult even they don't want her, but imo their a bunch of assholes for trying to weasel their way out of their job), and she gets very bad seizures. And growing up with her made my childhood nearly unbearable. And if she hears a baby or small child crying in public she'll try to attack. I can't even bear to be around her b/c it makes me panicky and my heart races so bad I feel like I'll throw up, and I don't experience such symptoms at any other time.

My mom expresses her constant worry that my sister is going to die, and while I could never harm nor kill anyone, I just have to ask WHY?!?!?!?!?!?!?!?! I honestly don't see her as being any good to herself, my family, nor this world. My mom goes through such lenghths to keep her alive and I just don't get it......


My mom is always like "your sister may die and I'm sooooo scared"

What does she think might cause your sister to die?

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"I have learned that pleasing everyone is impossible, but pissing everyone off is easy and fun as hell"

:eatu

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SlumSlut
What does she think might cause your sister to die?

Her seizures (shes had to go to the ER for it a couple times) and recently the doctor have her too small of a dose, so my mom is worried her seizures or doctors not handling it correctly will kill her.

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ladybug2203
And growing up with her made my childhood nearly unbearable. And if she hears a baby or small child crying in public she'll try to attack. I can't even bear to be around her b/c it makes me panicky and my heart races so bad I feel like I'll throw up, and I don't experience such symptoms at any other time.

I'm so sorry, ladybug, about the painful childhood and the stressful contact now . Early in my career, I worked with people taking care of relatives who will never get better (severely disabled children, post-stroke elderly, etc.) and I've found that exaggerated expressions of worry and fear often masked guilt. Care-giving is so burdensome and isolating. Even when the person is institutionalized. Many expressed that they wished the person would die peacefully but that carries alot of guilt. In response, they repeat to whomever would listen that they're worried about the person dying.

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CFinPenthouse

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ladybug2203
And growing up with her made my childhood nearly unbearable. And if she hears a baby or small child crying in public she'll try to attack. I can't even bear to be around her b/c it makes me panicky and my heart races so bad I feel like I'll throw up, and I don't experience such symptoms at any other time.

I'm so sorry, ladybug, about the painful childhood and the stressful contact now . Early in my career, I worked with people taking care of relatives who will never get better (severely disabled children, post-stroke elderly, etc.) and I've found that exaggerated expressions of worry and fear often masked guilt. Care-giving is so burdensome and isolating. Even when the person is institutionalized. Many expressed that they wished the person would die peacefully but that carries alot of guilt. In response, they repeat to whomever would listen that they're worried about the person dying.

I wish she would die peacefully, b/c honestly if she stays alive I'll inherit the job and I resent the hell out of it, I'm sooooo horrible if I refuse to become her guardian yet our extended relatives who do nothing still have a clean karma slate, and thats bullshit. I've even considered running away and changing my name. She is in a group home but the more you do for them the more they expect, their always calling my parents to take her home for a visit and I'm worried they'll do the same shit to me someday b/c the staff doesn't feel like doing their job :x

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ladybug2203
I've even considered running away and changing my name. She is in a group home but the more you do for them the more they expect, their always calling my parents to take her home for a visit and I'm worried they'll do the same shit to me someday b/c the staff doesn't feel like doing their job :x

I don't fault you one bit for considering it and see myself doing just that. I think you've been around it long enough, the emotional toll alone seriously compromises a person's quality of life. I think life is to be lived, and the emotional and physical burden of caregiving a person who will never get better is tremendous.

I couldn't say this out loud when I worked with families but this what I truly believed. It was so sad to see 2, 3, or 4 people, walking around like shells of their old selves, hovering in guilt, worry, and resentment because of a person who is not even conscious of them. It sucks. And seems totally meaningless in the larger scheme of a life.

I wish you strength in whatever decision you make.

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CFinPenthouse
I wish you strength in whatever decision you make.

Same here.

If there are people being paid to take care of her, there's no reason for it to be your burden. I suppose there will be those who'll say "she's your sissster," but if your childhood was already sacrificed by her existence, that would be ample evidence to say "I've done enough."

It can be the stress of it all, too - that causes the fear of death.

You are not responsible for your sister. It was not your choice to bring her into the world.

Your parents need to get her into a better home, that will be suitable for long term, with good workers, and make plans for the future. Set up a trust, assign guardianship to the carers at the home, etc.

Don't YOU feel guilty! This is not your mess nor your burden. YOU didn't choose it.

Your sister did not choose to be sick.

Still - that doesn't mean that it's your fault. Nor does it mean that YOU are responsible.

In fact - a very sick person DESERVES professional care - not clucking relatives. Professional care is best.

You have to make the best choice. Best for the person, and all involved.

I think sometimes people confuse their own guilt and wanting to do right - with what is best over all. They think that *they* must do it all - when in fact - it is not the best choice for *anyone* involved - esp. the person who needs care. Recognizing your limitations is important. For the good of ALL.

Hugs from me ~

My deceased great aunt had-has(he is still alive) a son who sounds about like that and he now lives full time in some sort of an institution in Michigan since her death a decade ago. Up until she died though, he visited all the time, nearly every other weekend, and it was nearly always a problem especially after she became elderly and developed health problems of her own, including Alzheimers. Where I got involved in it was when my then 75 y/o grandmother, her sister, up and decided to move up there to "help". GOD what a disaster that was and I was constantly worried about their well being and safety. Not only could he be violent, he had grand mal seizures regularly, usually 7 or 8 over the course of the weekend, and would damage furniture, hurt himself often times getting concussions and 9-11 having to be called, and/or he'd slam into one of them and they'd get bruises and one time, a broken wrist.

To my knowledge, he was born with mild mental retardation and started having seizures from birth, but she INSISTED on keeping him at home and the entire family languished and suffered because she would NOT put him in any type of institution. Honestly, I fail to see what good any of that suffering did because he never seemed to even know who the fuck he or anyone else was and was always blabbering a bunch of gibberish, bellowing out, and shrieking when he wasn't in the throes of a seizure. This shit can go on for DECADES because he's probably about 70 years old now and is STILL ALIVE, and still probably thrashing about and slobbering all over himself. I can say with absolute certainty I would NOT want to live if I became like that.

I do NOT understand why so many Moos insist on ruining everyone's life around them by keeping these poor beings alive and/or demanding they come and "visit" all the time. I realize we can't just kill them, but they DO need to be housed somewhere, I guess I could see how the Moo might want to visit, but it is SO WRONG to subject everyone else to it. It does nothing but cause famblee problems if anyone says anything about it like I did when it involved my grandmother, My great aunt got her feelings hurt and her kids have never spoken to me since. However, none of THEM took him in after she died, so I suppose as long as it was their elderly mother and aunt dealing with the monster, they didn't give a shit.:headbrick

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If YOU are the "exception" to what I am saying, then why does my commentary bother you so much?
I don't hate your kids, I HATE YOU!

don't you dare take her on, and don't let mommy guilt you into it either.
the state can take care of her, if she lives that long.
and kidless, it is constant: the rest of the famblee be damned and sacrificed to the tard, dement, psychopath, whatever defect it has.

two cents ¢¢

CERTIFIED HOSEHEAD!!!

people (especially women) do not give ONE DAMN about what they inflict on children and I defy anyone to prove me wrong

Dysfunctional relationships almost always have a child. The more dysfunctional, the more children.

The selfish wants of adults outweigh the needs of the child.

Some mistakes cannot be fixed, but some mistakes can be 'fixed'.

People who say they sleep like a baby usually don't have one. Leo J. Burke

Adoption agencies have strict criteria (usually). Breeders, whose combined IQ's would barely hit triple digits, have none.

Ladybug2203,

My heart goes out to you. But remember to take care of yourself. Don't let your health and sanity suffer out of worry, over something that is not your fault. The answer will come to you at just the right time.

I'm so sorry to hear about your situation, ladybug. My brother wasn't nearly as bad as your sister, but he did have behavioral issues that made my childhood hell at times. And my mother's inconsistent discipline never made it better as she would go to work and dump it all on me. And thats how I realized early on that I never wanted kids and parenthood sucks.

Today I don't speak to him unless I have to and refuse to help him with anything in his personal life. Fuck him. He never cared about me then and he still doesn't care now. Only now its my turn to also not give a damn.

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CFinPenthouse


I don't fault you one bit for considering it and see myself doing just that. I think you've been around it long enough, the emotional toll alone seriously compromises a person's quality of life. I think life is to be lived, and the emotional and physical burden of caregiving a person who will never get better is tremendous.

I couldn't say this out loud when I worked with families but this what I truly believed. It was so sad to see 2, 3, or 4 people, walking around like shells of their old selves, hovering in guilt, worry, and resentment because of a person who is not even conscious of them. It sucks. And seems totally meaningless in the larger scheme of a life.

I wish you strength in whatever decision you make.

At one point, I thought that I was the only person in the world who felt this way.

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kellic
I'm so sorry to hear about your situation, ladybug. My brother wasn't nearly as bad as your sister, but he did have behavioral issues that made my childhood hell at times. And my mother's inconsistent discipline never made it better as she would go to work and dump it all on me. And thats how I realized early on that I never wanted kids and parenthood sucks.

Today I don't speak to him unless I have to and refuse to help him with anything in his personal life. Fuck him. He never cared about me then and he still doesn't care now. Only now its my turn to also not give a damn.

My sister is the BEST birth control

If your mother dies, I would hide if I were you. You did not give birth to her and have already made more than your share of sacrifices. They would NEVER find me.

Just to threadjack, has anyone seen the Rosie O'Donnell TV movie, "Riding the Bus with My Sister?" It's taken from a book about a woman's life growing up with her developmentally- disabled sibling. Rosie's portrayal of a lumbering, screeching retard shopping for a toilet seat has to be seen to be believed.

http://www.youtube.com/index?desktop_uri=%2F&gl=US#/watch?desktop_uri=%2Fwatch%3Fv%3D2hZ5PO6rpKA&v=2hZ5PO6rpKA&gl=US



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"[GFG's pregnancy is] kind of like at the stables where that one dumb, ugly-ass mare broke out of her corral one day and got herself screwed by the equally fugly colt that was due to be gelded the same afternoon."- Shiny

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CFinPenthouse

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ladybug2203
And growing up with her made my childhood nearly unbearable. And if she hears a baby or small child crying in public she'll try to attack. I can't even bear to be around her b/c it makes me panicky and my heart races so bad I feel like I'll throw up, and I don't experience such symptoms at any other time.

I'm so sorry, ladybug, about the painful childhood and the stressful contact now . Early in my career, I worked with people taking care of relatives who will never get better (severely disabled children, post-stroke elderly, etc.) and I've found that exaggerated expressions of worry and fear often masked guilt. Care-giving is so burdensome and isolating. Even when the person is institutionalized. Many expressed that they wished the person would die peacefully but that carries alot of guilt. In response, they repeat to whomever would listen that they're worried about the person dying.

Sometimes they don't want the person to die peacefully at all, they just don't want them to die regardless of how horrible their lives are. One has to wonder about that. Some people identify as martyrs and will go to any lengths to save a shell of a person or a suffering person so they can be considered the One who Cares the Most. Anyone who isn't on board is Mean, including hospice for the very sick.

Ladybug2203, depending on what state you're in, beware of filial responsibility laws that might try to make you financially responsible for your sister's care after your parents pass away. About 30 states have these laws, and some will pursue siblings for support if there are no parents or adult children. Utah and Pennsylvania are two examples of states that potentially make siblings responsible.

Moving far away and changing your name is a pretty good option. If you can, move out of the US entirely. The Republicans have talked about passing a national filial responsibility law to "solve" the problems with Social Security, Medicare, and Medicaid (nursing homes) running out of $$$ in the future.

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kman
Ladybug2203, depending on what state you're in, beware of filial responsibility laws that might try to make you financially responsible for your sister's care after your parents pass away. About 30 states have these laws, and some will pursue siblings for support if there are no parents or adult children. Utah and Pennsylvania are two examples of states that potentially make siblings responsible.

Moving far away and changing your name is a pretty good option. If you can, move out of the US entirely. The Republicans have talked about passing a national filial responsibility law to "solve" the problems with Social Security, Medicare, and Medicaid (nursing homes) running out of $$$ in the future.

I'm in Connecticut

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kman
The Republicans have talked about passing a national filial responsibility law to "solve" the problems with Social Security, Medicare, and Medicaid (nursing homes) running out of $$$ in the future.

What? Oh, hell, let me go look that up.

........

F*! It's even worse than thought!

12 states impose criminal penalties on children who do not support their parents, and three states allow both civil and criminal actions.

Looking at the PDF that lists states with FR laws

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...law student Shannon Edelstone, in her award-winning essay (cited below), studied all of the state laws and found that most agree that children have a duty to provide necessities for parents who cannot do so for themselves.

Screw that; big time. My father is dead; my mother looks like she may fail in the next few years; so it isn't that much of a concern to me. However, there are many situations where a parent doesn't deserve one damned dollar in support from their kids.

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Judges, accordingly, have considered such variables as the adult child's financing of their child's college education, as well as his/her personal needs for savings and retirement.

A person can never save too much money for retirement. Those years are the most vulnerable for people; proper care can only be totally ensured if you pay for it yourself.

Nope, even in the best relationships between parents and kids, the kids should not face criminal charges for refusing to support their parents.

Just checked. Connecticut has a filial responsibility law, but it affects adult children of parents who are still under age 65. You would not be liable for your sister's care as the law is worded.

Wow, so somebody who was abused by their parents until they escaped can be victimized a second go-round if the parents decide that their kid should be taking care of them lest they are criminally penalized? That's just asking for abusive parents to be given a taste of their own medicine by their bitter, vindicitve victims.

"Who will take care of you when you're old?" the breeders ask us. Well, not somebody legally forced to do so. More of this bullshit that children somehow accrue a bill that must be repaid. A child did not enter a legal binding contract with their parents upon being born. A child did not ask to be conceived or born. Why should parents be owed for what they are supposed to do when they made the decision to become parents?

Oh, and I forgot to note that this isn't just an American issue. Here's one from Canada that made international headlines last year, because the son claims the mother abandoned him while he was still a minor.

http://www.dailymail.co.uk/news/article-2040370/Son-furious-mother-abandoned-decades-ago-sues-parental-support.html

A good comment from a CF guy I read on a blog while researching this topic:

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Eric
I fiercely oppose filial responsibility laws for several reasons. First, they selectively target children based on their parents' financial circumstances, something the children (usually) have no control over. Second, the burden of supporting parents would fall disproportionately on only children, who would bear 100% of the support liability while (for example) if there were three children, each would bear only one third of the liability. Once again, a person has no control over how many siblings they have. Third, the "reciprocity" argument that is often used to justify these laws discriminates against those people who choose not to have any children themselves. These childless people would have to support their parents but would have no one to support them later in life. Finally, the cost of elder care is so high that having to pay even a fraction of a parent's nursing home bills would bankrupt most middle class people. The wealthy could afford to pay, the poor would not have to pay, but the middle class would be screwed, as usual.

As an only child, and one who almost certainly will not have children, I stand to be doubly impacted by filial responsibility laws. It mystifies me that the issues I have raised do not seem to be addressed in any other articles or discussions I have found on this topic.

Enforcement of these laws will be inherently inequitable, cause resentment between family members, and wipe out decades worth of retirement savings for many people. Living in a different state from their parents may protect adult children for a while, but if filial responsibility ever becomes federal law, that option would also be gone.

Hopefully, there is enough public opposition that any elected official who favors filial responsibility laws will be committing political suicide. Even if the laws are ultimately ruled unconstitutional, they could do a lot of damage in the meantime.

2012 list of filial responsibility laws per state. Mine has none--thank God.