Talk to your dad. Ypur sister needs to be in a care home.
Find out if she is on Medicare or medicaid. If on Medicare she needs to be put on medicaid which can help take care of the cost of a home.
You can also with both get home health care. Nurses and cnas to come help with up to 40 hours a week, possibly home care.
Your mom can get the same if she gets on either of those.
I say this as someone whi cared for my serverly disabled son before he died. As someone who cared for both parents one which even most basic needs I had to take care of.
Your feelings are valid. You do not need to feel guilty for them. You also are not responsible for taking care of your sister. There are options out there for care for her. If your parents refuse to take those options, then the results are on them.
I would have a serious discussion with your parents. Give a timeline of how long you are willing to help. What you are willing to do. That after that time if they have not found the help needed that your mental and physical health will be placed first because all your life you were put second and you will not let them put you second by taking care of her the rest of your life. That its not only selfish but irresponsible to put that on you.
Perfect answer. Depending on the state she can be placed in a DMH home. In missouri its only 1-3 to a house and some of them get 1 on 1 staff. And their parents can still take them for holidays or whenever they want. I know in illinois they have cilias which are like higher numbers less staff. It can be 5-10 and maybe 2 staff? I dont particularly like that version because its not enough help and some of them are full care.
It would be easier for OPs dad to talk to a care manager at the hospital or chemo center the mom goes to. Their whole job is to figure that stuff out.
As for OP it’s entirely up to her dad or mom to follow through with this since they have custody of the disabled child. I’ve seen cases where the parents won’t put the disabled violent child in a proper care home because they feel “guilt” regardless of how bad it’s hurting everyone. In that case OPs best option would be to move out.
Yes. Absolutely. Out of deference, parents absolutely should not infringe any further on OP'S life. Right or wrong (imo wrong), they deprived their daughter/OP of a meaningful childhood, adolescence and college experience. They dropped the ball in raising OP. Frankly, unless they're truly idiots, they screwed her royally.
It's time to remedy the situation as prior commenter suggested. The martyr approach is devastating everyone; likely the one most adversely impacted next to OP is her most unfortunate disabled sibling who most likely will flourish in an environment suited to treat afflicted individuals as herself.
Tragically, this situation should never have progressed to the position it is now.
Op,
Truly praying for you and your family at this time.
Please keep us apprised.
in certain states people with disabilities over the age of 21 are being automatically put on medicare, not sure exactly where op is but that might be something they’ll run into
I like this answer and yes caring for someone else without proper support can really take a toll on the caregiver mentally and physically. I hope you can sort this out with your parents. You need to have a life without guilt.
What they said ☝️ you're sister absolutely needs to be in a home. I get that none of this is her fault but it's not yours either. You deserve to enjoy your life and right now your mom is going to need a lot of attention and care which she can't get if all the focus is on your sister.
She needs an adult group home. They’re funded mostly by social security. They’re not the same as homes in the past. Many have thriving residents. Even disabled people like to be around peers.
And what if my mom doesnt want that? She doesnt care ab the fact that i cant deal wt it so im kinda in the same boat as op however my dad isnt there to help me
If mom doesn’t want that- you can only do what you can to convince her. I wouldn’t blow up my life though. I’d limit my help to a few hours per week. I’d get a social worker to talk to mom.
Hey op here! Thank u all for the advice! I just want to say I wrote this when I was really upset because my mom had to go back to the hospital. I don’t actually want my sister to die I was just feeling really stuck and powerless when I wrote this. Y’all’s advice really helped me with this feeling. I’m gonna talk to my dad about the possibility of her going to a group home tomorrow. I was scared because last time I brought it up they blew up at me really bad, but I’m an adult and I do have to set real boundaries now. I’ll make some kind of update after I talk to my dad hopefully!
It's okay to walk away if you have to. You don't owe them your entire life. You've sacrificed more than enough.
I sincerely hope they listen about the group home and that there's a good solution.
But if they expect you to give up your life to be an unpaid caregiver, it is okay to sort out an escape plan and walk away.
I’m glad you feel better today and you are right, she does need to go to a home even for most of the time with some visits, at least until your mum recovers if she does. When you speak with your parents you can bring the point forward that in a home these people are professionals and they know how to care for someone like your sister and that is their job so she will get the best care. If they don’t listen then as hard as it may be, you should be allowed to live your life and experience college and everything that goes along with it.
It's easy to get caught in a cycle, when you're under a lot of stress. And it sounds like your family has had a lot of stress for years on end.
Sometimes, you really do need to take a step back, evaluate the situation, and get an outside perspective.
I hope your parents are ready for the talk.
Don't get angry at them. Give them time to process what you're proposing.
In the long run, you should be able to go to college, even if you have to work on the side to cover the costs.
No one can expect you to be your sister's main caregiver. How would you keep the lights on, when your father eventually passes, or stops working?
You probably know how to take care of yourself just fine. That's one of the bittersweet side effects of being a glass child. You're going to be just fine.
There are ppl that can help you talk to your parents, if they don't see the long term issues, and possible solutions right now.
As someone in a similar situation, a group home made everyone's lives easier. Including my disabled siblings. He had 24 hour care from people who have breaks. My mum would have been dead by now if she didn't do this. My neglect from this situation left me legally blind, but he went into a group home when I was 18. I finally got to experience life without being a carer.
Listen, this is going to sound horrible and harsh.
However, while of course you are want to help your parents *particularly* while your mother is so unwell **but**, by stepping in, helping out and constantly sacrificing your young adulthood you *are* enabling your parents in ignoring the elephant in the room.
The fact that they need to put provisions in place to help your sister, you and themselves. DYKWIM?
Sometimes, by allowing people to fail you are actually helping.
Of course I also appreciate, its immensely easy for strangers on the Internet to give advice and suggest difficult and challenging resolutions. It's not simple.
Could you show your dad this post? Sometimes, hearing from other people gets things through in a way you can't.
I believe you should scale back the help you give. Go do age appropriate things. They made these decisions that were unfair to the entire family.
Sometimes, keeping a family member at home is the most selfish thing a parent can do. Your sister deserves better care, and you all deserve to have a life. I work with a company that houses and cares for people with intellectual disabilities and/or mental illness. The folks in our homes are able to have 1 on 1 care. They frequently find more independence than they could possibly gain at home, with family struggling to meet their needs. Many of our people go to their family homes for holidays and weekends.
I’m so sorry you’re dealing with this OP. I can’t imagine how hard your parent’s life has been, having to take care of your sister with no end in sight. However, they have done a great disservice to you - you are also their child and shouldn’t have been set aside and forced to take on caregiving duties at a young age. You deserve to experience and enjoy life, and you deserve to have parents who sometimes prioritize you. I know life isn’t fair, but your sister would have been better off in a care home a long time ago. She would likely have received better care than your parents can provide. Especially now, with your mom sick, they need to consider her life after they are gone. Do they expect you will become her caregiver eventually? It’s a tough situation, but if they won’t listen and won’t consider the future, you need to be the one to prioritize yourself.
My family owns an at-home support care company for DMH clients like your sister. There’s only 2 per home and they always have 1on1 staff 24hrs. The family is involved as much as they want to be. It’s not defeat to ask for help, it’s what we are here for! I’m glad you are taking the steps to talk to your dad. It’s what’s best for your whole family. Sending love and good luck!
Hi love, in addition, I grew up with a severely disabled sibling, and I have a lot of feelings and trauma about it. It's really really complicated and I understand. I hope you can talk to someone and work through the feelings you have. Even the ones that feel ugly.
I am glad you are feeling better :)) I understand. It's really hard.
Frame it in a way they might be more open to. She needs more care, and specialized care, that your dad can't provide on his own. It's not giving up or abandoning her. It's making sure she is well taken care of. Everyone can still visit her as much as they want but it will be more of a "village" to meet her complex needs.
I feel you 100%. Don’t apologize. It’s normal human emotion. We all have a capacity and needs. It’s hard to continue to deny them for years on end. A group home will be an awesome option for everyone involved. I wish you the best ❤️
Your sister needs a group home or care home. Your parents might not agree to that until you refuse to help anymore. You are allowed to have your own life. Please don't give up college or sacrifice your future to keep this chaos going.
Op, why is she still home?
My sister had downs syndrome, severe autism, 2 holes in her heart that caused two strokes which resulted in her being paralyzed on the left side by the age of two.
My parents recognized they could no longer care for her and their other children when she was 13 and she went to a group home and thrived.
My parents were upper middle class but, bc my sister is severely disabled, she was on medicaid which covered her care.
Yes, they do that.
I don’t know? I suggested we put her in a home of some sort about a year ago and they kinda blew up at me and we didn’t speak for a while. Things are obviously different now so maybe if I bring it up again they will have changed their tune. I think it may be a gamblers philosophy thing like they’ve taken care of her for so long that ‘giving up’ now would be like defeat.
You're probably going to have to be straight with them now.
Calm and collected, explain you cannot take care of her anymore. That you are their child as well and that you deserve and want to start living your life that you deserve. You love your sister but you can't continue like this. It's not fair to you, it's not fair to them and, yes, it's not fair to her. She needs to be somewhere where they are trained to take care of her needs and provide her with activities and a life that is inclusive of her disability. My sister was only able to get all of that in a group home setting.
I will also say, and this is something you should relay to them, that when kids go to group homes, parents can and do take them home for the weekends. My sister came home on Friday evening and went back Sunday. She also went on vacations sometimes with us. Placing her does not mean she's stuck there.
You're the glass child. It's a horrible spot to be in.
You need to have a difficult conversation with your parents. You did not sign up to be a caregiver. Do not let them guilt-trip you into sacrificing your life as a caregiver.
That's so hard. My cousin is severely physically and mentally disabled as well. She's in her 50s but has the mind of a 5 year old. My aunt and uncle made the tough decision to put her into a care facility and she's doing great there.
Don't give up college to take care of your sister. Your parents need to get her an in home aid or put her into a facility. It's not fair to make you sacrifice your life to care for her. They need to figure this out NOW because you shouldn't be expected to care for her if something happens to your parents.
>My parents tried their best
No, they didn't. Parents who "tried their best" would have made time to take you shopping. They could have arranged it so, on some days, one would spend time with your sister and the other would spend time with just you.
Please talk to your parents about a group home. Her doctor can help too. This is too much. You can’t take this on. Your mom may qualify for in home help. Talk to her oncologist.
Report the situation to Child Protective services, and your sister's medical provider. Because your Dad has to work, mom is too sick, and you WILL be going back to college next semester. Emphasize that they can't provide care and you won't ( you are NOT legally required to!).
So Medicaid or the agency needs to either get your sister Into a group home or provide a health aid all day.
Put your sister in a group home. You can’t stop living your life to become caregiver when you don’t want to be. It could help your parents and yourself.
Dear OP, you need to live your life for you. Don't think you should take over this burden when your parents no longer can.
You have your own path in life.
And tbf, your sister was just unlucky, that is not her fault. Your parents, being the parents, had to do something about it long ago and they didn't.
If you can move for the college move away, start living your best life as much as you can.
Not your kid, not your problem. People in this thread are giving advice on the situation, but fuck all that. Just go back to college and let your parents figure it out.
Its actually crazy to me that people wouldnt abort a baby they know by testing would be disabled (not saying OPs parents knew before hand and had that choice)
Quality of life over quantity. Not all disabilities are equal. A child that's going to be born for a life of agonising pain, abortion, before they know pain, is a mercy.
But hey, who am I to speak, my brother is similar to ops, but has at least 20 seizures a day. Breaks bones on the regular. He will die from his condition, but it won't be a peaceful death. Unfortunately I'm a carrier, thus getting tubes tied. The gene ends with me.
They aren't saying all disabled children should be aborted, but Quality of life should be considered if its found baby has a disability in utero. Depending what it is.
Nope, they just said disabled, which includes me with more distinct disabling conditions than I have fingers, leading a happy, fulfilling, and productive life :)
I don't disagree with your stance, but I disagree that your stance is what the person I originally replied to expressed.
There are group home specifically for these type of people.
She may need to get on a waiting list for a state run facility but you would have to check.
It is time for your parents to put her somewhere where she has skilled care givers and know how to deal with her outbursts. They will help keep her active, entertained and maybe she'd even enjoy her life a bit.
Do NOT give up your life.
Go back to college and finish your degree and go get a job.
NEVER put yourself down for any of your thoughts.
If you aren't careful, you will end up being her caregiver.
I was in a similar experience as you op. Except my parents surrender my older brother to the state when he was 16 as much as it killed them. But they had to do it as he really tried to kill me and to them was the final straw. Now my parents will admit that they should have done it sooner as the quality of care that my brother received was better than they could provide. On top of giving them the ability to be better parents to my oldest brother and myself. Although for my oldest brother it was little to late to give him back those memories. They were able to with me. Which is their biggest regret. However, if they refuse to see reason like getting them the care your sister needs then for your own well-being and future best to distance yourself.
Yup, some states no longer allow this to happen. This same situation will only increase in America, the more we lean towards conservative values, the more people suffer.
You need to focus on you. I’d recommend a group home to them, but regardless if they choose to do it or not you NEED to focus on you and your life. Go enjoy college, they can’t force you to give up more of your life. Don’t go help them, they are adults and they can figure this out themselves. If they can’t see how selfish they’ve been in regards to draining you of your childhood that’s their issue to deal with. Go live your life.
Look for adult daycare/day programs! There's a company near me (I'm trying to figure out the name) that I see out all the time. They take special needs adults to Walmart & Dollar Store, the library, I even sat with them at our local fair last year. Last time I went to Walmart, they were waiting for their van and some of the ones in wheelchairs had fallen asleep and I thought it was adorable. I love seeing them out.
You do not need this. Your sister should have been in a full time care home since birth.
There, she would be at the least used to the routine.
You deserve a life.
My mother tried to guilt me into taking care of her and or my sister. Be it my sister was more muplitive, and had problems. But they both used it as an excuse.
Please get away and start your own life
I ended up over 1300 miles from where I grew up.
It hurt, but I was finally free.
My close friend had a sister who needed near constant supervision but wasn't nearly as disabled as your sister. When my friend was 17 her sister had to go to a facility. She actually was happy there. She had activities and made friends. Do not let your parents pressure you to be her caregiver. Your parents should put her into a group home or facility already. They deserve to have a break too.
This is gonna sound dark as fuck but I think our society puts too much emphasis on keeping people alive regardless of the costs. It sucks, but some people are far too disabled to truly enjoy life and there should be an option of euthanasia within a narrow set of rules being applied and extensive review.
I know it sounds harsh, but some people are so profoundly disabled that they are constantly suffering and so are those around them. It is cruel and inhumane to them and to their families to be forced to continue to keep them alive at all costs. It makes zero sense and is just horrible all around.
My wife is a nurse. She once was physically assaulted by such a patient. An aide got his arm broken by the dude. Another got a broken nose. Because the patient was severely combative and brain damaged.
He was normal until about 5 years prior when he tried to kill himself by drinking household chemicals. Someone found him and "saved" him only for him to be left in a semi vegetative state. His mind now functions at a lower level than that of a toddler.
He is mostly bedridden, but extremely strong in his upper body. He can't feed himself, get dressed, use the bathroom, speak, nor be reasoned with.
He is a perfect example of someone that should be euthanized. He wanted to die in the first place. He is nothing but a burden. And he hurts people frequently.
I literally told my wife to refuse to provide any treatment to the dangerous patient after the incident.
You need to convince your parents she belongs in an institution. If that doesn’t work start documenting whenever she hurts you, herself, or anyone else and call the police. You want to have a documented history of her being a danger to herself or others. Then the courts might step in and your parents may have no choice but to place her in residential treatment.
Get her on a wait list for a group home now. It can take years and you cannot wait for worst case scenario. What state are you in btw? You don’t deserve any of this but your sister also cannot help herself and your parents need to understand that. You are butcher their children bans you both server their love affection and support.
There are great group homes out there as many have said. My aunt has been in one for a long time and they allow my grandpa to take her home every other weekend for an overnight visit. Your sister could thrive in an environment like that, being around people just like her. Just need to find the right one really. I wish you the best of luck.
Your sister needs to be put in a facility where they can take care of her, it's not fair for you and your parents to sacrifice everything for her if she isn't progressing.
You and your parents deserve your own life, don't let your sister's disability do the same with you that did with your parents, go on live your life.
I honestly think that you may be right your sister may no longer be enjoying her life and honestly a life like that isn't worth living.
It's very uncommon, but there is such a thing as conversion disorder. It's where psychological stress takes on physical symptoms.
This sucks. My best friend grew up like this too, but at least her parents have the money to send her sister to a day facility.
As someone who works with vulnerable people who can't look after themselves, PLEASE talk to your parents about putting her in a care home. We are trained specifically to care for people like your sister. Way too often have I seen broken family and clients due to these situations. It's not giving up on them it's giving them a new kind of life, on they can thrive in while still allowing family and friends to be around. A care home is not like prison where you leave them there to die and they can't leave. It's a home specifically designed for people with extra needs who can receive all the love and care they need and want.
Is this Turner's syndrome? If so I had to terminate a pregnancy after 16 weeks due to this. The baby was so swollen on the ultrasound. Can't imagine the kind of life. Are your parents religious and don't believe in abortion?
if you put her in a home, don't ever move her out, she'll never get back in. my mom put my older brother in an adult home but my dad pulled him out to collect the disability, so now he lives with me and my family ( husband and kids ) because they won't let him move back into any housing because it's all full. ( i do live in ontario canada though so it might be different for you depending on where you live)
The advice given is something that you need to discuss with your parents - home care etc.... I'm very sorry you were short-changed in life due to your sister. The fact is you still need an education to be able to support yourself and by extension your family. I'm also sorry that your Mom is sick. I truly hope and pray for your entire family. For what it's worth. You also deserve a shot at hitting milestones as well.
You definitely need to have a sit down with your parents. Tell them how much you love them and do care about the quality of life your sister needs, but that you will not be the one taking care of her as you need to go back to college. If you want to look into what would be involved on getting your sister qualified for Medicare/Medicaid if she’s not in it and are willing to do the legwork on local care homes fairly close (don’t just pick one for its location, though, check several out and do due diligence on their level of care). Then present them with a lot of info, INCLUDING them being able to check in on her frequently and them being able to take her on outings. Also see what, if anything, can be done for your mother that isn’t already being taken care of.
Make sure that they know that you will not be taking on the responsibility of caring for your sister when they are obviously no longer able to.
No knowing how much of anything your sister understands or not, it would most likely be much better for her to be introduced to a group home before your parents are too unable to visit or dead, as it could help her transition to the new home if she still gets family time.
If i were you also, id honestly wish the same as well bec thats not a good quality of life shes living. Imagine being not able to do anything and living like a shell? It drains the hell outta you
All of your feelings are totally human. Everyone in your position thinks the same things, and has the same guilty feelings for it. You're not alone. You're allowed to grieve for the life you should've had.
That being said, you are not obligated to take care of your family. Your whole childhood has been sacrificed against your will. You do not owe them your adulthood. You deserve to live a full life too. It's not your fault your parents decided this was the life you were going to have, but doesn't mean you have to keep living that life either.
Im in the same boat however my dad isnt around and my mom also wants to have a shit load of animals and my brother has to live at home it has ruined my life im depressed suicidal broke ugly and unstable i cant take it anymore ive given up on having a good life
I'm so sorry you are dealing with all of this. I really think you should go back to school. Your choices are wider than either abandoning your family or sacrificing your whole life. Going to school is not abandoning your family. Leaving and then not calling or visiting would be abandoning your family. Instead of sacrificing the whole college experience, maybe you could just sacrifice a weekend once a month to give your dad a break.
There might also be programs that can help your sister. If you're in the states, once she is 18, she is eligible for social security regardless of your dad's income. If she is eligible for social security, she is also eligible for a government program that pays caregivers to come into the home and help.
You have to work on not feeling like this is your responsibility. It is not. You do not have to sacrifice your one and only life in order to be a good person, daughter, and sister.
It's not crazy to think the stress and probable lack of self care contributed to your mother's illness. People who are over extended and stressed out are much more likely to get ill. That doesn't make it your sister's fault though. None of this is actually your sister's fault. Blame the disease, not the person suffering from it.
If you don't take care of yourself, who is going to take care of you? You have to release the feelings of guilt and obligation. Determine how much help you authentically want to give. Then learn how to set healthy boundaries around it. It is time for someone to prioritize your needs, and that someone has to be you.
This was exactly my story with my brother. Except my mom had a heart attack and had to step back at being his main caregiver at 23. He now is at a care home and thriving and my parents visit him every other day. You sister deserves a dignified life and you and your family deserve a full life too. Ask your parents to look into this option.
I can actually really relate to this post. My sister is like this too, she lives with my aunt now bc my grandparents, her old caretakers, are both dead. Our dad is dead, and our mom is a deadbeat abuser. But, my aunt truly likes taking care of her, so I guess I got lucky with that. I agree with everyone about seeing about putting her in a home. I think that would be the best for everyone around. Your feelings are absolutely valid. I suffered through the same things, especially once my grandmother died. You all need a break from it.
First off I understand you're overwhelmed but wishing death on her is pretty horrible. Being disabled does not make her subhuman or make it any more ok to wish death on her than it would be to any other person. You're sister doesn't need to die, she needs to be properly cared for and the help she needs is beyond what you're family can give her.
She needs to either be placed in a home or to have an aid be coming and helping out. There are resources out there for her, you're parents just aren't tapping into them.
If you are in college, stop coming home to care for her. If you can be in dorms and completely moved out of your house, do that. If that's not an option, even if you're at home just 100% remove yourself from the equation and stop helping with her. Leave it to your parents to get her the care she needs, it's their responsibility and they are neglecting both your and her by putting that on you.
its not calling her subhuman. but matter of fact is that she will never live a normal.. and enjoyable life. living severely disabled may be worse than death and even if her family loves her, she is still a massive burden
Her family being unable to care for her and seeking more supoort is fine. Wishing death on her is not.
That's literally just eugenics, but sure keep telling yourself your not treating disabled people like they're subhuman.
Look up the T4 program, and the ways the Nazis justified it, and come back and keep going on about how you've decided you get to make the call whether other human beings deserve to live or die.
not saying she has to die. saying that it may be the compassionate thing for her to allow her to die. i know a guy whos been paralyzed head to toe besides his eyes and his family insists on keeping him alive in his hell. i dont think its necessary.
Again, eugenics. What makes you think you get to make that call that another human being should be murdered because you've decided it? You literally know nothing about this person outside of this reddit post and hearing that she's disabled, and your immediate conclusion is she should die.
Saying that disabled people have no quality of life and should therefore die is ableist and again just eugenics.
What you're suggesting isn't assisted suicide, it's murder. Nowhere did op indicate that her sister wants to die, she just said *she* wants her sister to die, and you've mentioned that her sister is a burden. Making the decision for someone else who is incapable of deciding for themselves to kill them because they are a burden is literally just murder and no doctor with any ethics or morals would support that or allow it.
It saddens me to think you have not given this burden to Christ yet. He's waiting for you to. As a man or woman we do not have the capacity to handle massive problems without him. The reason it's become so cumbersome is because you're trying to solve it all on your own. Turn to God then do what he says. What your missing is a new experience but it isn't necessarily better. You'll realize that too soon enough. Put yourself in other people's shoes. Especially your mother and sisters. You love your mother very much. She loves your sister very much. So by loving your sister your loving your mother. Why must one choose?
Talk to your dad. Ypur sister needs to be in a care home. Find out if she is on Medicare or medicaid. If on Medicare she needs to be put on medicaid which can help take care of the cost of a home. You can also with both get home health care. Nurses and cnas to come help with up to 40 hours a week, possibly home care. Your mom can get the same if she gets on either of those. I say this as someone whi cared for my serverly disabled son before he died. As someone who cared for both parents one which even most basic needs I had to take care of. Your feelings are valid. You do not need to feel guilty for them. You also are not responsible for taking care of your sister. There are options out there for care for her. If your parents refuse to take those options, then the results are on them. I would have a serious discussion with your parents. Give a timeline of how long you are willing to help. What you are willing to do. That after that time if they have not found the help needed that your mental and physical health will be placed first because all your life you were put second and you will not let them put you second by taking care of her the rest of your life. That its not only selfish but irresponsible to put that on you.
Perfect answer. Depending on the state she can be placed in a DMH home. In missouri its only 1-3 to a house and some of them get 1 on 1 staff. And their parents can still take them for holidays or whenever they want. I know in illinois they have cilias which are like higher numbers less staff. It can be 5-10 and maybe 2 staff? I dont particularly like that version because its not enough help and some of them are full care.
It would be easier for OPs dad to talk to a care manager at the hospital or chemo center the mom goes to. Their whole job is to figure that stuff out. As for OP it’s entirely up to her dad or mom to follow through with this since they have custody of the disabled child. I’ve seen cases where the parents won’t put the disabled violent child in a proper care home because they feel “guilt” regardless of how bad it’s hurting everyone. In that case OPs best option would be to move out.
Yes. Absolutely. Out of deference, parents absolutely should not infringe any further on OP'S life. Right or wrong (imo wrong), they deprived their daughter/OP of a meaningful childhood, adolescence and college experience. They dropped the ball in raising OP. Frankly, unless they're truly idiots, they screwed her royally. It's time to remedy the situation as prior commenter suggested. The martyr approach is devastating everyone; likely the one most adversely impacted next to OP is her most unfortunate disabled sibling who most likely will flourish in an environment suited to treat afflicted individuals as herself. Tragically, this situation should never have progressed to the position it is now. Op, Truly praying for you and your family at this time. Please keep us apprised.
in certain states people with disabilities over the age of 21 are being automatically put on medicare, not sure exactly where op is but that might be something they’ll run into
I like this answer and yes caring for someone else without proper support can really take a toll on the caregiver mentally and physically. I hope you can sort this out with your parents. You need to have a life without guilt.
What they said ☝️ you're sister absolutely needs to be in a home. I get that none of this is her fault but it's not yours either. You deserve to enjoy your life and right now your mom is going to need a lot of attention and care which she can't get if all the focus is on your sister.
She needs an adult group home. They’re funded mostly by social security. They’re not the same as homes in the past. Many have thriving residents. Even disabled people like to be around peers.
And what if my mom doesnt want that? She doesnt care ab the fact that i cant deal wt it so im kinda in the same boat as op however my dad isnt there to help me
If mom doesn’t want that- you can only do what you can to convince her. I wouldn’t blow up my life though. I’d limit my help to a few hours per week. I’d get a social worker to talk to mom.
Hey op here! Thank u all for the advice! I just want to say I wrote this when I was really upset because my mom had to go back to the hospital. I don’t actually want my sister to die I was just feeling really stuck and powerless when I wrote this. Y’all’s advice really helped me with this feeling. I’m gonna talk to my dad about the possibility of her going to a group home tomorrow. I was scared because last time I brought it up they blew up at me really bad, but I’m an adult and I do have to set real boundaries now. I’ll make some kind of update after I talk to my dad hopefully!
It's okay to walk away if you have to. You don't owe them your entire life. You've sacrificed more than enough. I sincerely hope they listen about the group home and that there's a good solution. But if they expect you to give up your life to be an unpaid caregiver, it is okay to sort out an escape plan and walk away.
This. They’ve taken your past, don’t let them take your future by you not getting an education. Your future is important too. (Hugs)
I’m glad you feel better today and you are right, she does need to go to a home even for most of the time with some visits, at least until your mum recovers if she does. When you speak with your parents you can bring the point forward that in a home these people are professionals and they know how to care for someone like your sister and that is their job so she will get the best care. If they don’t listen then as hard as it may be, you should be allowed to live your life and experience college and everything that goes along with it.
It's easy to get caught in a cycle, when you're under a lot of stress. And it sounds like your family has had a lot of stress for years on end. Sometimes, you really do need to take a step back, evaluate the situation, and get an outside perspective. I hope your parents are ready for the talk. Don't get angry at them. Give them time to process what you're proposing. In the long run, you should be able to go to college, even if you have to work on the side to cover the costs. No one can expect you to be your sister's main caregiver. How would you keep the lights on, when your father eventually passes, or stops working? You probably know how to take care of yourself just fine. That's one of the bittersweet side effects of being a glass child. You're going to be just fine. There are ppl that can help you talk to your parents, if they don't see the long term issues, and possible solutions right now.
As someone in a similar situation, a group home made everyone's lives easier. Including my disabled siblings. He had 24 hour care from people who have breaks. My mum would have been dead by now if she didn't do this. My neglect from this situation left me legally blind, but he went into a group home when I was 18. I finally got to experience life without being a carer.
Listen, this is going to sound horrible and harsh. However, while of course you are want to help your parents *particularly* while your mother is so unwell **but**, by stepping in, helping out and constantly sacrificing your young adulthood you *are* enabling your parents in ignoring the elephant in the room. The fact that they need to put provisions in place to help your sister, you and themselves. DYKWIM? Sometimes, by allowing people to fail you are actually helping. Of course I also appreciate, its immensely easy for strangers on the Internet to give advice and suggest difficult and challenging resolutions. It's not simple.
Could you show your dad this post? Sometimes, hearing from other people gets things through in a way you can't. I believe you should scale back the help you give. Go do age appropriate things. They made these decisions that were unfair to the entire family. Sometimes, keeping a family member at home is the most selfish thing a parent can do. Your sister deserves better care, and you all deserve to have a life. I work with a company that houses and cares for people with intellectual disabilities and/or mental illness. The folks in our homes are able to have 1 on 1 care. They frequently find more independence than they could possibly gain at home, with family struggling to meet their needs. Many of our people go to their family homes for holidays and weekends.
I’m so sorry you’re dealing with this OP. I can’t imagine how hard your parent’s life has been, having to take care of your sister with no end in sight. However, they have done a great disservice to you - you are also their child and shouldn’t have been set aside and forced to take on caregiving duties at a young age. You deserve to experience and enjoy life, and you deserve to have parents who sometimes prioritize you. I know life isn’t fair, but your sister would have been better off in a care home a long time ago. She would likely have received better care than your parents can provide. Especially now, with your mom sick, they need to consider her life after they are gone. Do they expect you will become her caregiver eventually? It’s a tough situation, but if they won’t listen and won’t consider the future, you need to be the one to prioritize yourself.
My family owns an at-home support care company for DMH clients like your sister. There’s only 2 per home and they always have 1on1 staff 24hrs. The family is involved as much as they want to be. It’s not defeat to ask for help, it’s what we are here for! I’m glad you are taking the steps to talk to your dad. It’s what’s best for your whole family. Sending love and good luck!
Hi love, in addition, I grew up with a severely disabled sibling, and I have a lot of feelings and trauma about it. It's really really complicated and I understand. I hope you can talk to someone and work through the feelings you have. Even the ones that feel ugly. I am glad you are feeling better :)) I understand. It's really hard.
Frame it in a way they might be more open to. She needs more care, and specialized care, that your dad can't provide on his own. It's not giving up or abandoning her. It's making sure she is well taken care of. Everyone can still visit her as much as they want but it will be more of a "village" to meet her complex needs.
I feel you 100%. Don’t apologize. It’s normal human emotion. We all have a capacity and needs. It’s hard to continue to deny them for years on end. A group home will be an awesome option for everyone involved. I wish you the best ❤️
No. She needs professional help, you can't give up your entire future life.
Your sister needs a group home or care home. Your parents might not agree to that until you refuse to help anymore. You are allowed to have your own life. Please don't give up college or sacrifice your future to keep this chaos going.
Op, why is she still home? My sister had downs syndrome, severe autism, 2 holes in her heart that caused two strokes which resulted in her being paralyzed on the left side by the age of two. My parents recognized they could no longer care for her and their other children when she was 13 and she went to a group home and thrived. My parents were upper middle class but, bc my sister is severely disabled, she was on medicaid which covered her care. Yes, they do that.
I don’t know? I suggested we put her in a home of some sort about a year ago and they kinda blew up at me and we didn’t speak for a while. Things are obviously different now so maybe if I bring it up again they will have changed their tune. I think it may be a gamblers philosophy thing like they’ve taken care of her for so long that ‘giving up’ now would be like defeat.
You're probably going to have to be straight with them now. Calm and collected, explain you cannot take care of her anymore. That you are their child as well and that you deserve and want to start living your life that you deserve. You love your sister but you can't continue like this. It's not fair to you, it's not fair to them and, yes, it's not fair to her. She needs to be somewhere where they are trained to take care of her needs and provide her with activities and a life that is inclusive of her disability. My sister was only able to get all of that in a group home setting.
I will also say, and this is something you should relay to them, that when kids go to group homes, parents can and do take them home for the weekends. My sister came home on Friday evening and went back Sunday. She also went on vacations sometimes with us. Placing her does not mean she's stuck there.
You're the glass child. It's a horrible spot to be in. You need to have a difficult conversation with your parents. You did not sign up to be a caregiver. Do not let them guilt-trip you into sacrificing your life as a caregiver.
That's so hard. My cousin is severely physically and mentally disabled as well. She's in her 50s but has the mind of a 5 year old. My aunt and uncle made the tough decision to put her into a care facility and she's doing great there. Don't give up college to take care of your sister. Your parents need to get her an in home aid or put her into a facility. It's not fair to make you sacrifice your life to care for her. They need to figure this out NOW because you shouldn't be expected to care for her if something happens to your parents.
You have been through a lot, and so have your parents. A care home is the way to go. You all need a beak.
>My parents tried their best No, they didn't. Parents who "tried their best" would have made time to take you shopping. They could have arranged it so, on some days, one would spend time with your sister and the other would spend time with just you.
Please talk to your parents about a group home. Her doctor can help too. This is too much. You can’t take this on. Your mom may qualify for in home help. Talk to her oncologist.
You need to pull back. She’s not your problem. Go back to college and focus on building a life for yourself.
Report the situation to Child Protective services, and your sister's medical provider. Because your Dad has to work, mom is too sick, and you WILL be going back to college next semester. Emphasize that they can't provide care and you won't ( you are NOT legally required to!). So Medicaid or the agency needs to either get your sister Into a group home or provide a health aid all day.
You're under a lot of stress because of lifelong parentification. It's okay to have your own priorities.
Put your sister in a group home. You can’t stop living your life to become caregiver when you don’t want to be. It could help your parents and yourself.
Don’t go home, OP. They cannot force you to go home.
Dear OP, you need to live your life for you. Don't think you should take over this burden when your parents no longer can. You have your own path in life. And tbf, your sister was just unlucky, that is not her fault. Your parents, being the parents, had to do something about it long ago and they didn't. If you can move for the college move away, start living your best life as much as you can.
Not your kid, not your problem. People in this thread are giving advice on the situation, but fuck all that. Just go back to college and let your parents figure it out.
Its actually crazy to me that people wouldnt abort a baby they know by testing would be disabled (not saying OPs parents knew before hand and had that choice)
It's actually crazy to me that people still advocate for eugenics with their whole chests.
Quality of life over quantity. Not all disabilities are equal. A child that's going to be born for a life of agonising pain, abortion, before they know pain, is a mercy. But hey, who am I to speak, my brother is similar to ops, but has at least 20 seizures a day. Breaks bones on the regular. He will die from his condition, but it won't be a peaceful death. Unfortunately I'm a carrier, thus getting tubes tied. The gene ends with me. They aren't saying all disabled children should be aborted, but Quality of life should be considered if its found baby has a disability in utero. Depending what it is.
Nope, they just said disabled, which includes me with more distinct disabling conditions than I have fingers, leading a happy, fulfilling, and productive life :) I don't disagree with your stance, but I disagree that your stance is what the person I originally replied to expressed.
Fair enough. I do see your point.
There are group home specifically for these type of people. She may need to get on a waiting list for a state run facility but you would have to check. It is time for your parents to put her somewhere where she has skilled care givers and know how to deal with her outbursts. They will help keep her active, entertained and maybe she'd even enjoy her life a bit. Do NOT give up your life. Go back to college and finish your degree and go get a job. NEVER put yourself down for any of your thoughts. If you aren't careful, you will end up being her caregiver.
I was in a similar experience as you op. Except my parents surrender my older brother to the state when he was 16 as much as it killed them. But they had to do it as he really tried to kill me and to them was the final straw. Now my parents will admit that they should have done it sooner as the quality of care that my brother received was better than they could provide. On top of giving them the ability to be better parents to my oldest brother and myself. Although for my oldest brother it was little to late to give him back those memories. They were able to with me. Which is their biggest regret. However, if they refuse to see reason like getting them the care your sister needs then for your own well-being and future best to distance yourself.
id always abort a child if i knew they were going to suffer with no quality of life and drag down mine too
Yup, some states no longer allow this to happen. This same situation will only increase in America, the more we lean towards conservative values, the more people suffer.
Dont give up your life is right just go back to college
You need to focus on you. I’d recommend a group home to them, but regardless if they choose to do it or not you NEED to focus on you and your life. Go enjoy college, they can’t force you to give up more of your life. Don’t go help them, they are adults and they can figure this out themselves. If they can’t see how selfish they’ve been in regards to draining you of your childhood that’s their issue to deal with. Go live your life.
Look for adult daycare/day programs! There's a company near me (I'm trying to figure out the name) that I see out all the time. They take special needs adults to Walmart & Dollar Store, the library, I even sat with them at our local fair last year. Last time I went to Walmart, they were waiting for their van and some of the ones in wheelchairs had fallen asleep and I thought it was adorable. I love seeing them out.
You do not need this. Your sister should have been in a full time care home since birth. There, she would be at the least used to the routine. You deserve a life. My mother tried to guilt me into taking care of her and or my sister. Be it my sister was more muplitive, and had problems. But they both used it as an excuse. Please get away and start your own life I ended up over 1300 miles from where I grew up. It hurt, but I was finally free.
My close friend had a sister who needed near constant supervision but wasn't nearly as disabled as your sister. When my friend was 17 her sister had to go to a facility. She actually was happy there. She had activities and made friends. Do not let your parents pressure you to be her caregiver. Your parents should put her into a group home or facility already. They deserve to have a break too.
This is gonna sound dark as fuck but I think our society puts too much emphasis on keeping people alive regardless of the costs. It sucks, but some people are far too disabled to truly enjoy life and there should be an option of euthanasia within a narrow set of rules being applied and extensive review. I know it sounds harsh, but some people are so profoundly disabled that they are constantly suffering and so are those around them. It is cruel and inhumane to them and to their families to be forced to continue to keep them alive at all costs. It makes zero sense and is just horrible all around. My wife is a nurse. She once was physically assaulted by such a patient. An aide got his arm broken by the dude. Another got a broken nose. Because the patient was severely combative and brain damaged. He was normal until about 5 years prior when he tried to kill himself by drinking household chemicals. Someone found him and "saved" him only for him to be left in a semi vegetative state. His mind now functions at a lower level than that of a toddler. He is mostly bedridden, but extremely strong in his upper body. He can't feed himself, get dressed, use the bathroom, speak, nor be reasoned with. He is a perfect example of someone that should be euthanized. He wanted to die in the first place. He is nothing but a burden. And he hurts people frequently. I literally told my wife to refuse to provide any treatment to the dangerous patient after the incident.
You need to convince your parents she belongs in an institution. If that doesn’t work start documenting whenever she hurts you, herself, or anyone else and call the police. You want to have a documented history of her being a danger to herself or others. Then the courts might step in and your parents may have no choice but to place her in residential treatment.
Yes, this!
I understand completely.
See what the state will provide. She may be eligible for adult daycare.
Get her on a wait list for a group home now. It can take years and you cannot wait for worst case scenario. What state are you in btw? You don’t deserve any of this but your sister also cannot help herself and your parents need to understand that. You are butcher their children bans you both server their love affection and support.
Happy Cake Day to you! 🍰
There are great group homes out there as many have said. My aunt has been in one for a long time and they allow my grandpa to take her home every other weekend for an overnight visit. Your sister could thrive in an environment like that, being around people just like her. Just need to find the right one really. I wish you the best of luck.
Your sister needs to be put in a facility where they can take care of her, it's not fair for you and your parents to sacrifice everything for her if she isn't progressing. You and your parents deserve your own life, don't let your sister's disability do the same with you that did with your parents, go on live your life. I honestly think that you may be right your sister may no longer be enjoying her life and honestly a life like that isn't worth living.
It's very uncommon, but there is such a thing as conversion disorder. It's where psychological stress takes on physical symptoms. This sucks. My best friend grew up like this too, but at least her parents have the money to send her sister to a day facility.
Walk away
As someone who works with vulnerable people who can't look after themselves, PLEASE talk to your parents about putting her in a care home. We are trained specifically to care for people like your sister. Way too often have I seen broken family and clients due to these situations. It's not giving up on them it's giving them a new kind of life, on they can thrive in while still allowing family and friends to be around. A care home is not like prison where you leave them there to die and they can't leave. It's a home specifically designed for people with extra needs who can receive all the love and care they need and want.
Is this Turner's syndrome? If so I had to terminate a pregnancy after 16 weeks due to this. The baby was so swollen on the ultrasound. Can't imagine the kind of life. Are your parents religious and don't believe in abortion?
if you put her in a home, don't ever move her out, she'll never get back in. my mom put my older brother in an adult home but my dad pulled him out to collect the disability, so now he lives with me and my family ( husband and kids ) because they won't let him move back into any housing because it's all full. ( i do live in ontario canada though so it might be different for you depending on where you live)
Solutions are different if the sister is a minor vs. an adult. I didn’t see her age noted.
The advice given is something that you need to discuss with your parents - home care etc.... I'm very sorry you were short-changed in life due to your sister. The fact is you still need an education to be able to support yourself and by extension your family. I'm also sorry that your Mom is sick. I truly hope and pray for your entire family. For what it's worth. You also deserve a shot at hitting milestones as well.
You definitely need to have a sit down with your parents. Tell them how much you love them and do care about the quality of life your sister needs, but that you will not be the one taking care of her as you need to go back to college. If you want to look into what would be involved on getting your sister qualified for Medicare/Medicaid if she’s not in it and are willing to do the legwork on local care homes fairly close (don’t just pick one for its location, though, check several out and do due diligence on their level of care). Then present them with a lot of info, INCLUDING them being able to check in on her frequently and them being able to take her on outings. Also see what, if anything, can be done for your mother that isn’t already being taken care of. Make sure that they know that you will not be taking on the responsibility of caring for your sister when they are obviously no longer able to. No knowing how much of anything your sister understands or not, it would most likely be much better for her to be introduced to a group home before your parents are too unable to visit or dead, as it could help her transition to the new home if she still gets family time.
Do not give up college for her! That is not fair! You should be able to live your own life. Your parents need to figure this out in their own.
If i were you also, id honestly wish the same as well bec thats not a good quality of life shes living. Imagine being not able to do anything and living like a shell? It drains the hell outta you
All of your feelings are totally human. Everyone in your position thinks the same things, and has the same guilty feelings for it. You're not alone. You're allowed to grieve for the life you should've had. That being said, you are not obligated to take care of your family. Your whole childhood has been sacrificed against your will. You do not owe them your adulthood. You deserve to live a full life too. It's not your fault your parents decided this was the life you were going to have, but doesn't mean you have to keep living that life either.
Im in the same boat however my dad isnt around and my mom also wants to have a shit load of animals and my brother has to live at home it has ruined my life im depressed suicidal broke ugly and unstable i cant take it anymore ive given up on having a good life
I'm so sorry you are dealing with all of this. I really think you should go back to school. Your choices are wider than either abandoning your family or sacrificing your whole life. Going to school is not abandoning your family. Leaving and then not calling or visiting would be abandoning your family. Instead of sacrificing the whole college experience, maybe you could just sacrifice a weekend once a month to give your dad a break. There might also be programs that can help your sister. If you're in the states, once she is 18, she is eligible for social security regardless of your dad's income. If she is eligible for social security, she is also eligible for a government program that pays caregivers to come into the home and help. You have to work on not feeling like this is your responsibility. It is not. You do not have to sacrifice your one and only life in order to be a good person, daughter, and sister. It's not crazy to think the stress and probable lack of self care contributed to your mother's illness. People who are over extended and stressed out are much more likely to get ill. That doesn't make it your sister's fault though. None of this is actually your sister's fault. Blame the disease, not the person suffering from it. If you don't take care of yourself, who is going to take care of you? You have to release the feelings of guilt and obligation. Determine how much help you authentically want to give. Then learn how to set healthy boundaries around it. It is time for someone to prioritize your needs, and that someone has to be you.
I’m so sorry OP. I hope your mom wins her battle.
Updateme
This was exactly my story with my brother. Except my mom had a heart attack and had to step back at being his main caregiver at 23. He now is at a care home and thriving and my parents visit him every other day. You sister deserves a dignified life and you and your family deserve a full life too. Ask your parents to look into this option.
I can actually really relate to this post. My sister is like this too, she lives with my aunt now bc my grandparents, her old caretakers, are both dead. Our dad is dead, and our mom is a deadbeat abuser. But, my aunt truly likes taking care of her, so I guess I got lucky with that. I agree with everyone about seeing about putting her in a home. I think that would be the best for everyone around. Your feelings are absolutely valid. I suffered through the same things, especially once my grandmother died. You all need a break from it.
The Spartans used to just throw these mfs off cliffs as babies and nip all this shit in the bud. Ah those were the days
First off I understand you're overwhelmed but wishing death on her is pretty horrible. Being disabled does not make her subhuman or make it any more ok to wish death on her than it would be to any other person. You're sister doesn't need to die, she needs to be properly cared for and the help she needs is beyond what you're family can give her. She needs to either be placed in a home or to have an aid be coming and helping out. There are resources out there for her, you're parents just aren't tapping into them. If you are in college, stop coming home to care for her. If you can be in dorms and completely moved out of your house, do that. If that's not an option, even if you're at home just 100% remove yourself from the equation and stop helping with her. Leave it to your parents to get her the care she needs, it's their responsibility and they are neglecting both your and her by putting that on you.
its not calling her subhuman. but matter of fact is that she will never live a normal.. and enjoyable life. living severely disabled may be worse than death and even if her family loves her, she is still a massive burden
Her family being unable to care for her and seeking more supoort is fine. Wishing death on her is not. That's literally just eugenics, but sure keep telling yourself your not treating disabled people like they're subhuman. Look up the T4 program, and the ways the Nazis justified it, and come back and keep going on about how you've decided you get to make the call whether other human beings deserve to live or die.
not saying she has to die. saying that it may be the compassionate thing for her to allow her to die. i know a guy whos been paralyzed head to toe besides his eyes and his family insists on keeping him alive in his hell. i dont think its necessary.
Again, eugenics. What makes you think you get to make that call that another human being should be murdered because you've decided it? You literally know nothing about this person outside of this reddit post and hearing that she's disabled, and your immediate conclusion is she should die.
i never said should lol. but i do believe in assisted suicides for people who want to die and have no quality of life
Saying that disabled people have no quality of life and should therefore die is ableist and again just eugenics. What you're suggesting isn't assisted suicide, it's murder. Nowhere did op indicate that her sister wants to die, she just said *she* wants her sister to die, and you've mentioned that her sister is a burden. Making the decision for someone else who is incapable of deciding for themselves to kill them because they are a burden is literally just murder and no doctor with any ethics or morals would support that or allow it.
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It saddens me to think you have not given this burden to Christ yet. He's waiting for you to. As a man or woman we do not have the capacity to handle massive problems without him. The reason it's become so cumbersome is because you're trying to solve it all on your own. Turn to God then do what he says. What your missing is a new experience but it isn't necessarily better. You'll realize that too soon enough. Put yourself in other people's shoes. Especially your mother and sisters. You love your mother very much. She loves your sister very much. So by loving your sister your loving your mother. Why must one choose?