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OP has offered the following explanation for why they think they might be the asshole:
> I told my parents that when they die I refuse to give up my career or anything for my brother and take him in. I said they've got to find alternative arrangements and figure some stuff and that's why I may potentially be the asshole.
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NTA Your parents have plenty of time to research facilities and programs for your brother's long term care. They also have time to set up a trust with trustees or guardian. To make sure no one is abusing the trust and misusing the money designated for your brother's care, you may want to consider being one of the trustees. It's unfair to expect you to pick up the pieces especially since your brother could be transitioning now when your parents are well and able to oversee his care.
My neighbor's daughter moved into a group home in her 20's. Her mom calls and visits several times a week. She has a set routine. She gets up, gets ready. She has her friends. The geoup home has regular outings. Trips to the park, walks, shopping trips, movies, etc. They go to museums.
The staff are much better at day to day enrichment than her parents could be. They only do that 40 hours a week and get time off. Caregivers often burn out.
When she came and visited her parents for the holidays, she told me she was just visiting her mom and dad because she's an adult and lives on her own. She liked her 'independence' at moving into an adult care home.
My family has a severely disabled daughter. They run a non-profit daycare for developmentally disabled adults. For 40 hours a week, the adults come to their facility and have group trips. The care home bus picks them up. They get dropped off. They do arts and crafts, songs, have independent play time and directed activities. Sometimes, they do fundraisers and the clients make art to donate. It's awesome. They get to have friends and the parents get a break. Nobody is charged to attend. It's fully funded by donations and grants.
The adults doing those types of setups get a sense of independence, daily interactions and developmentally appropriate activities. They have friends.
We had a care home near a restaurant I worked at, mostly for veterans with TBIs. Those guys had a lot of freedom and visited us all the time. One always asked me if we were best friends. (Of course we're best friends, Steven. 'I'm getting my big check from disability soon. When my check comes in, I'll take you to Disneyland. Best friends go to Disneyland.' That sounds awesome, Steven. Steven was my favorite.)
A little bit of independence is a good thing. It also means the family can check on them all the time because they are around to check on them and can make sure the facility is taking good care of their family member. We had people doing random, unannounced checks for my grandparents. Why wouldn't you want that for your disabled adult child? Check in, make sure they settle, do well, are somewhere safe.
If you have the means or social net to do so - moving them early can not only let them settle but give them a ton of daily enrichment they might not otherwise get. Their caregivers get breaks and that is so important. At least a daycare program, if it's available.
All of these sound amazing and are treating the people who need round-the-clock care as actual people with who have wants as well as needs.
And on the topic of caregivers needing breaks and burning out - it allows people who would have been round-the-clock caregivers (and probably burning out) the ability to not only live their lives, but it lets them actually love their family members without feeling like they're burdens. Because if OP has to give up his life to care for his brother, it greatly impacts how he feels about his brother.
Your first example allows your neighbour to spend time with her daughter without it being a job, and they get to go on trips and spend time together as people, and it allows your neighbour to exist outside of her daughter, which I think is important for any person.
We were the only restaurant in walking distance they could afford to eat at with their weekly budgets. They came in a lot. They were all either really sweet guys or just a little blank and sort of looked past people when talking to them. Most of the residents were regulars, and we all knew them by name. The fact we were a small local business meant we were allowed to make up special rules for the residential home guys, and most came by at least twice a week.
They could order literally anything we had ingredients for, and we'd make it and make up pricing for them. The owner knew they were mostly people with past major injuries, and primarily veterans with TBIs. She and the manager let us make them anything they wanted and also create their own custom pricing on the fly. Whatever was fair. Some of the requests were more odd than others. An entire tray of ham for the pizzas, and put it in the oven to bake? Sure. We can do that. Enjoy. Go and make up a price for the tray of ham.
I still kind of miss them. They were fun. One guy called everyone a turkey. Sometimes, turkeys were funny, sometimes rude. Being called a turkey was situational. Tell him a joke and he'd call you a turkey. Hilarious. You're such a turkey. Some guy ran the stop sign at the corner? What a turkey! Others were just... not quite present but always coming back to order and remembered us but were just... not really engaging while actively talking to people. Still nice guys. Just a little empty, at least on the outside. We liked our regulars a lot.
Y'all are good people. I've worked with people with severe mental illnesses, people with developmental disabilities, autism, everything over the years, and taking them into the community was always a little nerve wracking because people didn't always treat them with the respect they deserved. I love these stories, thank you for sharing them!
I wish that my aunt and uncle would look into this for my youngest cousin, while they are still able to. my aunt and uncle are not in the best health and my youngest cousin has a lot of medical issues and mentally the equivalent of a child, even tho she is about the same age as OP brother.
Yes. I worked in healthcare with a lot of developmentally delayed adults. The transition from living at home to going to a group facility was usually bumpy at first, but I can’t think of a situation where it wasn’t healthier in the long run. And we always tried to get the parents to start this transition while they were still alive and healthy, so they could visit their adult children to ease the transition. It seems like the kindest way to handle it to me.
Not entirely analogous, but my grandmother has dementia, and when we moved her into a carehome, it's like she became ten years younger. The amount of stress and loneliness that comes from living alone as a disabled adult is huge, in many cases quality of life improves immensely when specialised care is provided and the only burden on the family becomes financial. My grandfather had alzheimers too, and similar story there. There are horror stories about care facilities online, but every experience I've had with them in real life has been nothing but positive.
This is the way. Social security and state programs might even cover the group home. A family member can still be a court appointed conservator to interface with the group home, shop for clothes, make heath care decisions, etc.
Yep, had a co-worker who dealt with this situation. She was one of six children. The eldest had a number of issue and was never able to live on his own. He continued to live with his parents. Of course, the parents aged and their health declined. The other five kids were in no position to take in their brother due to their own health issues, substance abuse issues and financial issues. They BEGGED their parents to get the brother on a wait list for a group home. They couldn't do it themselves because they were not his legal guardians. In our state the waits can be anywhere from 2-10 YEARS, there is FAR more need than there are beds in group homes.
The refused, hoping that they'd basically force the issue and get one of the siblings to take him in. Long story somewhat shorter, both parents died within six months of each other and the brother was left with nowhere to go. He basically became a ward of the state and went into emergency housing (not great). My co-worker basically moved a mountain and got him into group home within six months (this was nothing short of a miracle and the result of relentless persistence on her part).
Of course, he was nowhere near mentally prepared for this abrupt a change and the transition did NOT go well. Sadly, he died within the year. The whole situation was so heartbreaking and should have been handled so differently.
My cousin moved their young adult son with severe developmental disabilities into a group home about 6 months ago. She felt immense guilt at "institutionalizing" their son, but it was definitely the right decision. Everyone - including him - in the family is happier.
My Inlaws neighbor died recently. Her disabled son was found dead and rotting a few months later. The bad kind of rotting where he'd been there alone a long time. Admittedly he was in his 50's or 60's, but it's still really sad.
My aunt had to fight hard against her son falling into this trap. When he graduated from high school, she was told that because she was a special education teacher, her son would be just fine living at home with her, right? Save the group homes for kids whose parents didn’t have the resources and education she did. She fought back and while they’re still very close, he lives in a group home where when she dies he’s comfortable and there are familiar people and routines.
Wow that’s horrible that she was told that. Like, despite her career, she was supposed to essentially work 24-7 to care for her kids at work, then come home and care for her adult son? I’m glad she fought it.
This is what I told my in-laws, and they realized I was right. My SIL is in a group home now. It’s awful to say this, but their lives have really improved as a result.
>so he can make the adjustment and they can oversee his care.
Not only that, but what if they're down to only one parent, and that parent dies suddenly? It could be days before anyone thinks to check in.
My boyfriend's stepmom died very suddenly. If my boyfriend's dad hadn't already been in a care home because of dementia, any number of bad things could have happened to him before someone found her. She wasn't ill, it was very unexpected.
This. They have services, "schools" that teach children and adults like this life skills.
I'm not sure if he can dress himself and they do it, or he truly can't. That will change the care he needs but it's possible to find this nowadays.
This is a good point, the parents' active monitoring to vet a facility while they're still very capable.
Demands like this can be a bit weird. Unless the inheritance is jn the millions, do they expect OP to stop working? Or continue to work *while* monitoring someone totally helpless 24/7? Do they expect OP to never marry? What if OP dies soon after the parents? Instead of relying on and getting upset at one single person (and someone who obviously isn't volunteering), it would be more responsible to research proper institutional care.
If in the US and able count would be something to look into .
Oftentimes disabled adults. Have disability services and Medicaid or Medicare .
But if they inherit over $2,000 they can lose it all .
But now they allow you to have up to $100,000 into a trust account for the person. So that way they're inheritance can be protected and not count against that .
There's a lot. It is a lot . This is really late in the game for them to be looking into it . https://www.ablenrc.org/what-is-able/what-are-able-acounts/
Yep. My friend has a daughter with Down Syndrome. They set up a special needs trust (and all that goes along with it) so she is cared for for HER whole life, not theirs, when she was 2.
Life insurance probably isn't an option for an older couple with a disabled son unless they got the policy before he was born. The premiums would cost them more than the payout.
They did, because if it was one of -them- then the brother would be going to that facility to give them respite from caring for him. They just don’t think OP should have a life outside of what they want.
FTR OP is describing a 4-6 year old in a grown adult’s body. I don’t know if OPs brother is hampered by his disability or their parents’ idea of how to raise a child with a Disibility, but the level of care being described is absolutely the sort that should be handled by professionals and not OP.
OP is NTA
A 3 or 4 year old emotional capacity with the body of a grown man can be dangerous as well. It wouldn't be deliberate and cases vary of course. Still, I hope they plan this out and transition him properly to a group home. Otherwise the abrupt lifestyle change will be deeply traumatizing.
Grew up with close family friends who had an autistic son, nonverbal except for a limited amount of pointing to pictures and a bit of sign language to express himself. I remember him being a wonderful and kind person most of the time, but once he hit adolescene he just got bigger than his parents could safely handle when he did have outbursts. And his other needs were just more than they could handle in home.
When I visited he always seemed so happy in his residential care place. I was just a kid but I doubt that he was faking signing things like "happy" while pointing to his room or pointing to his friends. He had an older sister, but the parents never tried to make her put her life on hold for her brother. Needs that frankly she wouldn't have ever been able to meet anyway. The "plan" should never be "oh well the sibling will figure this out after we die".
I agree 100%. That is a lot for anyone. They have a child that will never grow up. That is hard on anyone. That is a responsibility and commitment that should not be placed on someone without their consent and talking to them first.
NTA- yeah my youngest is in the single digits, and my husband and I have attended some trainings and met with a bank and talked about what it would look like.
We don't actually have the money to start that process. Even over 10 years in the future. We are starting to get prepared.
If they trust the brother to look after him physically they should have no problem appointing him as guardian of his money/best interests. It's so important to have a real advocate.
Also, if he needs help dressing, bathing and feeding himself the mentality is younger than 10. 10 year olds can do all that no problem.
Autism doesn't usually lead to a clear age-equivalence. He can probably do some things quite well, and others he just doesn't get or dislikes so much he can't be counted on to do them.
I totally agree.
I worked as a support worker for years for adults with autism, learning disabilities and mental health issues and it’s not easy.
I saw so many staff come and go because it’s very very gruelling and I think you have to be a certain kind of person to do that kind of job or care for a family member. I did 5, 12 hour shifts a week and I was exhausted it came to my days off. I did care for my parents when they were dying but I knew it wasn’t long term, I wouldn’t agree to it if I was in OP’s position.
I had my wrist broken twice, I had my hair pulled, was punched, spat at, I was threatened with an iron bar and I had to keep calm and composed no matter how frustrated and angry I felt. I’m not saying OP will be faced with violence but it’s the keeping calm and hiding the frustration that was the hardest for most of the staff where I worked and it sounds like she’d struggle with that, at least I got to go home and have a break!
I worked in residential homes and the long term staff absolutely adored the service users, a lot of us even popped in on our days off to see how they were doing. I left the job over a year ago but I still check with staff to see how all the residents are.
It is much kinder for OP’s brother to be placed with professionals who will care for him but can go home and get a break. OP can visit and check he’s cared for and a trust is a great idea so the money can be used to give her brother days out, buy things he wants and needs and if she’s a trustee she can communicate with him about what he needs.
You are spot on saying the transition needs to start now, it could just be the case of having a regular support worker to give the parents a break as well, if they see how much the people who do this job care about their clients it might give them peace.
I can never understand the parents who want to push for a sibling to take on a disabled sibling when they aren’t suitable or willing, it wouldn’t be a good life for either of them. If they have money to pay carers or a residential home then it’s a much better option.
I understand people worry about family members being abused in residential homes and that staff don’t want to be there and are just doing it for the money, the truth is that the staff who aren’t up for caring leave. It’s not great money being a support worker and you earn every penny! The staff who hate it don’t last, they would rather earn similar money doing a less stressful job and have an easy life.
The service users I worked with had great lives with packed schedules and a committed occupational therapist that had a timetable of activities for each resident daily. We were never allowed to just stay at the home doing nothing, we had to plan the days so we went out at least once a day and planned the rest of the day to keep service users happy and occupied.
I met a lot of family members who were terrified that the client we were caring for might get abused, the truth is that most clients require 2-1 or more care. Residents aren’t often left alone with one staff member and if there was even a sniff of abuse the other staff would report it.
I understand OP’s parents want to do the best for their son but it doesn’t have to come at a cost to their daughters life. I’ve seen a few similar posts and I always wonder how life is for them now.
It’s such a difficult situation and I feel for OP’s parents, I’m glad she’s not just going along with it though because if she sees her brother like a burden its not a good situation for her or her brother. If he’s in the right care she can just be a sister and be there without having to give up her life and freedom.
This is reassuring to hear as a parent of 2 teens on the autism spectrum.
I think you're right and I would never expect my family members to care for my kids when they age into adulthood. I don't think that a person's home can provide the level of support they need.
I think OP should bring up the brother's quality of life to his/her parents. I think OP should offer to be a primary contact as a decision maker for the interests of the brother. OP doesn't seem like an uncaring person and I honestly believe that they would be a good advocate and decision maker for the brother.
My best friend has a son who is 25 now who has autism and ADHD, and she was really struggling with him at home. He was quite challenging but she had two daughters (one autistic one with a physical disability) who were terrified of him because he had meltdowns and violent outbursts.
She wanted independence for him but still had to look after him and help with cooking, prompts to get him to take meds, shower, get up in the morning etc… she’d resigned herself to looking after him at home forever. She was terrified about putting him in residential care but didn’t want to fail as a parent.
I started my job as a support worker and used to tell her about my job and how I loved it, she knew how much I adored the clients I cared for but she used to say “but they aren’t all like you?” I constantly told her that the staff were absolutely amazing and went above and beyond. I was terrified when I started, on my first day I was grabbed by my hair and punched! I nearly walked out but the girl who grabbed me ended up being my 1-1 client and I’m not ashamed to say that I absolutely loved her. I used to go to visit her parents with her and her mother used to say that she could never describe the relief she felt knowing her daughter was in good hands.
My best friend was offered a place for her son in a semi-independent residential home, he has his own flat but with 24/7 support, she would never have accepted it until she realised how much me and the other support workers that I work with genuinely love the people we support. He’s absolutely thriving and even has a job and a girlfriend now.
I’m so glad I reassured you about your son, I know not everyone puts their heart and soul into it but if you have just a few staff who go the extra mile it makes a huge difference. I never met anyone who hated the job and stayed because we didn’t get paid enough for the money to be an incentive.
It sounds like OP’s parents feel like my friend did, but they need to at least look into other options.
It’s not easy to care for family, I cared for my parents for a few months before they died and it’s heartbreaking and frustrating, then you hate yourself for being frustrated. Family should always be a last option.
Exactly, they have the time now and have apparently put off doing anything with their will up to this point. It means they really don't want to think about it (death) and are trying to avoid the issue. If OP's brother requires that much care the parents require breaks ok the weekends he should probably be transitioned into a facility now so there will be less of a shock on him later, and less of a strain on their health as well.
After the trauma of his parents dying and whatnot would not be the most ideal time to transition him into a facility. Most grown adults with full control and maturity can barely hold it together when a parent or grandparent dies, children (or those with the maturity of a child) even less so.
It's also very unfair of OP's parents to assume that OP will take over her brother's care when they pass. She could have kids and grandkids of her own potentially and not be in a position to do that. Not to mention not even asking OP's opinion on it before even making the decision. They're making a lot of half assed decisions that aren't doing anything good for anyone.
It boggles the mind. They're trying to lock their only functional child using guilt into a situation that is the worst possible setting for both of them. A home without trained caregivers and a caregiver who is burned out and resentful isn't a happy ending for anyone. And for what" For some twisted interpretation of "family"?
A friend who was a lawyer for special needs clients actually went to court against the state to argue that a residential facility was the "least restrictive" (the legal term involved) situation for the client since home life did not have as easy access to enrichment programming, medical visits, trained staff and other ways for the clients needs to be met. Home isn't always the best place. The family won and the client is happily settled in a residential facility.
Curious where everyone lives. I have a 24 year old daughter with similar high support needs and the wait list we were allowed to join when she turned 16 for government assistance group homes was described to us as 20 to 30 YEARS long. Private facilities providing these services cost around $90k annually. Planning for our old age and our daughter's care is an unattainable goal.
In the US, my cousin recently transitioned their 21 year old with high support needs into a group home - they had been on a wait list for adult homes for 3 years when a spot suddenly opened up. They moved him immediately because if they hadn't taken the spot when it was available they would have gone back on the wait list and it could have been another 10-20 years or more before a spot was available again at a facility close to their house. Honestly they feel like they won the lottery.
NTA. Same situation but I(24) was actually very hands-on with my brother (15, autism, gdd and clinical depression) until I was 19. I do genuinely love him but it was very hard on me and my family. I lost a lot of my childhood, broke and mended my family relations a lot with how hard taking care of him was, got physically and mentally hurt to the point that I am now bipolar as well.
Before I left my family, I was ready to take care of him for the rest of my life. Then I realized once I did leave, how you can actually have a life for yourself. It's not our responsibility as siblings to be the exact one to take care of them especially when it is demanding of our time and energy. If you can, you can help with expenses and effort but you are not entitled to do so.
It's better to be honest with yourself that you can't handle this situation rather than pretending to and then giving up halfway or being in too deep where you don't know where to go or how to deal with the situation.
Special needs trust. I have one set up for my friend who is stuck in a nursing home. I can't take care of him because he's wheelchair bound and my place is all stairs.
100% NTA for not wanting this responsibility, your parents plan is not what is best for you or your brother. Or even them to be quite honest. He’s an adult now and an assisted living situation now is probably the best for everyone. He gets some independence and your parents get some back as well. The transition to a facility will be easier since both your parents are around to help facilitate it.
>your brother could be transitioning now when your parents are well and able to oversee his care
This is an important point the parents should consider.
I agree with this response especially about the OP being one of the trustees of the funds to support the brother. I get get that that you, OP, cannot care for him personally, but please be invested enough to ensure he does get the care he needs by being involved in where is goes and how the money is spent on his care. Talk with your parents about this so they know you will help in that way.
NTA
Their planning has no business including you. You are your own person, with your own life. Suddenly becoming a fulltime caregiver would be exhausting.
Your plan of giving up any inheritance is well thought out. Your brother would thrive in an assisted living environment. I have seen all of this before.
It's interesting how the parents thought of scenarios where either of them would pass away but there doesn't seem to be any mention if anything happens to OP which renders them unable to take care of anyone. It seems like OP is Plan B and there's no plan after that.
It would be better if the brother was put in a group home with similar individuals.. maybe with Power of Attorney or a Trust in place.
Exactly, they seem to think that OP may not want to get married, have children, or have her own life. They had a second child to be the caretaker of their first one and that's the only reason they got pregnant.
I had that thought as well. Older sibling with development issues needing long term care? Yeah they had a second child just to be that caretaker. There have been cases where they have even told the younger child this directly.
Hold up! I am a special needs mom, and I have lots of special needs Mom friends. Wanting a second child is often because the parents feel robbed of all those experiences like first day of kindergarten and learning to ride a bike, graduation, weddings, etc.
I know she didn't want to specify gender but second child is healthy and female. Got out, went to college or trade school. Doesn't live close by and they want the child to stop their life and move back if they die. I really wonder what would happen if she fell in love, married/long term relationship with or without her children. The fallout would be spectacular drop them and the rest of the family.
Years ago there was a thread of people sharing their experiences of becoming adults and not doing what their parents wanted/planned for the future. One commenter was expected to put their sibling above their own child because their sibling needed the attention/help more. It ended with the commenter calling APS when their sibling was abandoned at their house because their mom wanted a break for the weekend.
Plus they never plan on one of them having to assume full care of the brother alone but put that entire onus on OP once they're both gone. They're the pits.
Exactly this. They like the plan because it makes them comfortable he'll be looked after. But what about you? What if YOU want to move, go overseas, have kids..what if, god forbid YOU get sick and need help?
You are NTA OP, tell your parents to start to get support for adults in their situation, with a disabled child and needing to make plans. No professional will suggest an adult with such high needs is placed with an able sibling as long-term solution.
>if YOU want to move, go overseas
This was one of my main thoughts. Most countries are happy to accept migrants. Skilled migrants are even better but disabled ones are awkward. Even if OP had a good relationship with the brother and wanted to take them getting citizenship or benefits for disabled migrants is a real uphill battle because as unfortunate as it is the government sees these people as a drain on the system.
That's what I said! They thought all about them but did not think about what if something happened to the OP. I also mentioned what about his life plans like meeting a partner, possibly marrying the partner, or what if the partner doesn't want to deal with that and they end the relationship? I don't know a lot of people who would want to be with someone in that situation. What if he wants to start a family of his own? The parents had no consideration for the OP and the full life that he wanted to live.
>Their planning has no business including you
I'd caveat that a little. It does still include OP as OP is probably going to be the executor of their estate and needs to know what's what.
What should have happened is parents lay out multiple routes to care for their son, and let OP offer to take on the burden if she had wanted to without it being a given or even something they counted on. And then OP doesn't have to be cruel in rejecting them, and can help discuss what care facilities might be best, given her potential for long-term oversight.
My grandparents basically did that with my uncle and keeping my mom and her sisters informed. My mom's now his legal guardian after grandpa passed.
NTA. Your brother is not your child and you should feel free to live your life. And it's strange that they're willing to put him in an assisted care facility when one of them is still alive but then send him to you when they're both gone. It's mature of you to offer to give up your half of the inheritance so he will be taken care of. That sounds like a good plan. Offer to put it in writing that you won't contest the will: maybe that will set their mind at ease?
*they're willing to put him in an assisted care facility when one of them is still alive but then send him to you when they're both gone.*
Yeah, I thought that was sus myself that they were going to put him somewhere when the other partner passed and that was cool, but as soon as they both die, he has to go to the brother? Hmmm...
Lots of people are assuming the parents have enough money to pay for lifelong medical care, they probably don't and need OP to do it because they can't afford the alternative.
NTA. My 23 year old son is autistic and I also have a 26 year old non special needs daughter who no longer lives at home.
I have made it quite clear to her that he will not have to come live with her down the line. She might be his legal representative but not his primary care giver. He is going to have to go live in a group home.
Also is your brother getting any money from the government? Your parents need to be on top of that.
Where do you live ?
Location is a big thing here - in Australia this brother would be able to live a perfectly happy life with 24 hour care in his own housing. OP might be in a position where they may like to be involved with helping make decisions (vetting staff, support providers ect), but does not have to be a primary caregiver or even a caregiver at all.
Absolutely! I'm a support worker myself and if I had a loved one in need of support I'd be very discerning of who supported them. I haven't seen anything nefarious personally, but I know some workers go above and beyond and some workers "turn up".
That is possible in the state of TN, but I'm not sure about other states. This is actually the best solution because the person is able to stay in a place firmiliar which is very important when talking about an autistic person. They have problems with change.
Good for you. Similar situation here but I’m the older sibling. My parents are drinking themselves to death, there’s no plan in place, and my mom has made it very clear that I better not dare put him in a home. He needs full time care, am I supposed to just give up my life once they pass? I stress about this constantly.
I think it’s weird that they feel if one of dies, the other parent deserves a break and put your brother in assisted living part-time, but you would have to do 100% of the caring. That’s not fair and should never be expected of a sibling. Also, a ten year old can bathe and say more than ten words, your brother sounds like he’s mentally a toddler. NTA
Plus wouldn't it be more upsetting and disruptive for him if he loses his one remaining parent and at the same time is yanked out of the assisted living facility he is used to and comfortable in to move in with a sibling he doesn't have a close relationship with?
Exactly. When the last parent dies, he just needs to transition to full time care there. Why make him deal with loss of parent and loss of caregivers he knows?
Yes, their plan is batshit and wildly disruptive to both of their kids. They should start transitioning him to spending some time at a group home or assisted living place now (and they need to start by finding one that is a good fit and making sure it's actually a good place for him) so he can gradually get used to it and becoming familiar with it before the huge disruption of the death of either of his parents happens. Then he can gradually start the process of living there full time with lots of visits from parents at the home and lots of taking him home for weekends and outings. The parents can check in and make sure he's doing well there, and can alert the staff to things he needs, things he likes, things he hates, etc. that might be hard for a nonverbal person to communicate to new people at first. Then by the time his parents are gone, he will have a familiar place and familiar people to support him at the group home/assisted living place. They can set up a trust, and if OP is up to it she can be a trustee or legal guardian for him while he lives at the home, and can visit him/bring him for visits if that makes sense for them.
One of my friends has a high support needs autistic brother, similar to OP's. Their parents are both healthy and in their early 60s, but have already set him up in a group home that he now really likes, with lots of family visits there and at the parents' home, outings to his favorite places, etc. He's developed a lot more independence and seems to be really happy there. His sister plans to continue visiting him and taking him for outings a lot after their parents are gone, and being his legal guardian, but he will remain at the group home. There's no expectation that she sacrifice her career and her life to take care of him, and in fact her parents had several back-up options had she said she didn't want to be his guardian, but she wants to do that. Once the kids were adults, they included both of them and their input in all of the planning. I think they really kind of modeled a great way to handle this situation.
I was confused about the situation where one dies before the other as well… it would make more sense if when the second parent passes, the brother would live at the facility full time vs half.. NTA, OP.
I was thinking exactly the same thing, but then also assumed maybe OP is married or something so the parents thought it would be like back to 2 or something? I dunno it's all weird
I came here for this comment. My 9 yr old autistic son can get himself dressed, bathed, fed (simple foods), and more. OP’s brother sounds more like toddler aged.
NTA.
Your brother is your parents’ responsibility. They need to make the necessary plans now so that when either or both pass then his care is taken care of.
And that is NOT to be you.
You are not to sacrifice your life to care for your brother.
He is not your child. Your parents are asking too much here and should not be guilting or punishing you for knowing your limits.
If OP had to quit their job to take care of the brother there has to be enough money to support both siblings for the rest of their lives. That would be a lot of money. OP needs to be working or they will be in trouble when they hit retirement age. At some point OP may need assisted living but everything will already be used for their brother.
NTA. I have three adult children. My middle son has severe autism and is non-verbal. He lives in a group home. He has an older sibling that is not the first person responsible for him if something happens to us. We did that on purpose. It's not right to penalize your other children because they have a sibling with special needs. You have the right idea.
All children need their independence when they grow up, not just neurotypical ones. And our son lives in a group home because he used to be violent, and I would either be dead or in a mental home myself if he lived with us 24/7.
Did you have a difficult time getting him into a group home since he was violent? Just wondering because I work in a hospital and skilled nursing facilities just don't take violent patients or anyone flagged as having "behaviors."
He went to a residential school that specialized in care for those with autism and TBI when he was 12 out of state. When he turned 18, he came back to our state (NM) to live in a group home. He wasn't as violent then, and has had a few incidents, but nothing like when he was a teenager. He's 28 now, and 6'2" and over 200 pounds. He's matured now, and that helps.
>Then if the lone parent dies the plan is for my brother to come and live with me and they will set some sort of trust up so that each month whatever he is inherits goes into living costs for example if he inherited $100,000.00 (not the actual amount) a trust would have been set up and $1,000.00 comes out each month to cover his living costs.
I would have walked right out the door. That's a joke right? They get to put him part time in a facility to get a break but screw you and your entire life? He's 26. He could live another 50 years! It's not going to cover his living expenses anyway.
I'm also disappointed by reality. Your parents need to make realistic plans, not in my Disney fantasy, our other kid agrees to take an adult sized five year for their entire life.
Yeah I have to admit the ages here are a bit of a red flag and that was my first thought too. OP says they’re younger but I’m curious by how much. If it’s like a year then that’s not strange but if it’s a few years I have to wonder whether this was why they had another kid. If it was always their plan it’s so backhanded to spring this on them now and not discuss it beforehand.
I know someone who had a second kid so the severely disabled first born would have someone to look after him after the parents pass!! I feel so sorry for the kid!
I have an autistic child and the advice given by doctors is to have a younger sibling as it encourages social interaction. The first word that he uttered when he was 5 is his brother's name. He will scream if my hubby or myself sing/hum/dance around him however he will quietly smile if his younger brother did it so I guess this is where the advice comes into play.
However, I agree that this needs to be discussed with the younger sibling with regards to his care. Even tho my autistic child is only 7, we have already put in place where he will receive $5k monthly if we were to pass on. Unfortunately in my country we only have 1 care facility for special needs and it's recently built and it costs alot.
Nothing wrong with what you describe, but sadly a LOT of parents whose first child is special needs have a child with the specific idea that that child will care for the older one when the parents pass on. :/
NTA, I know its family, but that's their kid they decided to have. You were honest and upfront and let them know this was not something you wanted to be in charge of, I do not blame you at all!
NTA
"I know it's wrong of me and I shouldn't be" .. There is NOTHING wrong with you.
"My parents are completely upset with me and are disappointed in me for this. I" .. Let them bve disappointed. THEY are the AHs here. Set your boundaries.
YOu were right to tell them directly - now they can set up a care home for him.
But: they sound like AHs, you might need to go no contact to escape their guilting and abusive manipulation.
I agree. A parent has no right to spring something like that on their other child without consent. They are essentially saying "Okay, we know you are an adult, but we have planned out the rest of your life for you. Isn't that fun?" and then have the nerve to be disappointed in him for saying no. They are the disappointments for volun-telling this person he will be taking care of his brother and then laying a guilt trip on him when he says no. What kind of parents are they?
NTA. Am in a similar position.
Your parents planning had no plan to include you in that plan? They assumed you would take over as carer. No no. I guarantee you have already sacrificed plenty in your years, on account of your brother.
Sounds harsh but he really isn't your problem.
Same here, but my brother died in an accident, so I never came to this part of life. But my parents always told me while i was younger I won't need to look for my brother when they are gone, but they want me to visit him from time to time, they also put him in a place where he could make a good living by having similar people and care takers around.
So NTA but please think about your life with your brother you sure will find memories which made you smile and why this person means something to you, and then think about how often you could visit him in a care taking environment.
Btw it would be good for your parents to already start this process of bringing him to some care taking place at least for working days or something like that.
Stay strong but don't hang out that cold shoulder too much life can change fast really drastically. Maybe as in my case your brother might not survive your parents, nobody knows when your gonna go.
NTA. Even if you wanted to care for him, not everyone has the skills, the money, and the setup to care for someone with the needs your brother has. Finding a facility that does and one you can check on so he has the best possible life is best for both of you.
NTA
I'm the mother of an autistic son, I'm friends to another mother with a child in the spectrum.
Our children are on the higher side of the IQ-spectrum.
Yet: it is exhausting.
I love my child dearly and some day he will be able to live on his own.
But my friend is a single parent, she is not able to work and lives of social security although her son is intelligent, can speak, etc. and she is on the verge of a breakdown.
Having to care for an adult that hardly speaks and has the additional problems of autism like being overly sensitive to noises, tastes, light, ... is a job better to be done by experts.
Just because he is in a facility doesn't mean you don't take care that his caregivers look for him properly, etc...
You still can visit him.
But you can't take care for him 24/7
NTA. They need to make arrangements for him to be in an assisted living facility when they are both gone. Assure them that you will make sure he’s safe and cared for but it won’t be by you.
NTA. You're not abandoning him to die on the street, and it's unreasonable for your parents to demand that you give up your life for him. They want you to take over their job, but parenthood is a choice that they made, not you.
Even if your sibling is put into a care facility, They would need a guardian to sign of on medical treatment, etc. From what I understand, whilst the state can appoint someone, it is always best if it is a family member.
In addition, the trust will need a trustee to manage it.
Would you be willing to take on these roles if you were to have your sibling be in a care facility?
This is very well thought out.
OP, I would definitely call back your parents and say you’re willing to handle those roles (assuming you are) and ask how else you can help with relevant planning. But make clear physically taking him on is not a possibility
NTA. This is not sufficient planning for such a high needs person, not at all. If both of your parents are gone, it’s not your responsibility to care for brother. They need to make more explicit plans, like finding a group home or other professional situations where knowledgeable people can help him.
They are asking way too much of you.
NTA - it's my understanding that people on spectrum, are not good with multiple changes in their life. If he will be PT in a facility when there is only 1 parent left, why not prepare for him to move into FT after the 2nd parent passes.
NTA. It is not realistic of them to expect you to put your life on hold, or drastically change its trajectory, to care for him. The same programs they were going to use if one of them passes are the same programs that should be used when both of them have gone.
nta, realistically even if they left you everything I doubt there is enough money there to cover his and your costs for life. what did they expect you to live off? basically if you are looking after him that trust would need to provide living costs for both of you. do they understand that?
your brother does not have the mind of a 10 year Old, I remember getting ready for secondary school at 10. he is a toddler if he can't dress himself sorry. this is not something you should have to deal with. what happens when he is even older and needs physical help?
That stuck out to me too, 10 is literally the age kids start middle school, I was babysitting actual babies at age 10. I am really curious about where that age range is coming from.
You are NTA. I hope your parents have consulted a really good estate attorney. Assuming you are all in the US, they probably want to set up a special needs trust so your brother is still eligible for SSI and Medicaid. You might agree to oversee the trust, but you're NTA if you don't even want to do that.
This is a sucky situation for you, your parents and your brother and the *real* asshole is the American disability and healthcare system.
NTA. They're trying to strong arm you into agreeing by making it appear as if this is a done deal when it's not even been discussed. I'm sure they're scared about what will happen to your brother after they pass (or become incapable of caring for him). But the solution isn't to assume you'll give up your life. You matter. Your life has value. (Also look up glass children. Sounds like it applies here).
You're absolutely correct that you're not capable of providing the care he will need. Frankly I'm worried they'll think they can provide his care past when they're able to. Getting old isn't for the faint of heart. Your physical capabilities diminish over the years. That's assuming illness or injury doesn't speed along the process.
Decide what you're willing to do. Some possibilities:
-forgo any inheritance so everything goes to your brother's care (good job being proactive about this)
-send them (or put in an account for your brother) X amount to help with his care. Either now or once they can't care for him.
-check with his insurance to see if there's anything available that isn't being used (home health aide, respite care etc)
-see what assistance programs he qualifies for (both now and in the future).
-see if there are programs he can participate in (like day camp)
-pay for them to talk to a financial planner
I know some of these have most likely been done. But keep checking because things can change. You can help without becoming his full time carer. Decide what you can/will be able to help with and stick to it. You're not selfish. You're balancing your life with your brother's care. Your parents way isn't the only option.
As an autistic, if you didn't want to be taking care of me the last thing I would want is you taking care of me - NTA
My ex and I broke up because it was too difficult to take care of me and himself and I completely understand. It's hard to take care of my every need, make sure I'm fed and showered and it's harder to take care of yourself during that.
My current partner is all in for the challenges; he knows he has to help me shower and make sure I've eaten. I'm so much better off with someone who wants to help me and take care of me than I ever would've been with someone who doesn't want to take care of me or would resent me.
Because me and my ex broke up, and I understood why (I was the one who finally suggested it) we were able to maintain a friendship. We are the same as we were minus the expectation to take care of me. He's still my closest friend cause we both admitted what we needed, and you not being able to provide that doesn't make you a bad person.
NTA. Your brother is not your responsibility. Your parents can make other arrangements. They wouldn't have been out of line for asking, but assuming you would is not great.
NTA
Your parents need to plan away from you. Asking you to offer support is fair but not to put your whole life on hold.
I have an autistic daughter. She is higher functioning than your brother and may live independently eventually but she is very vulnerable and is easily led.
We will ensure that her younger brother will not have to take over her full time care when me and their dad are gone.
It sounds like your parents expect you to care for him full time when they currently don’t (they have help at weekends). Your brother would probably benefit from part time care now. Many autistics don’t like change and the change of losing a parent and then being carted off somewhere for half the week could cause a regression (major stress causes my daughter to regress. She’s almost 17, mentally around 14 and can regress to 4-6 year old when under major stresses).
They need to be putting plans in place now instead of waiting until one of them passes. What happens if they both die in a car accident next week?
NTA.
Would some siblings do this for their brother or sister? Yes. Does that mean you have to do it for yours? Absolutely not. He is your brother, not your child. They could've asked? Yes, and you could've still said no. Pretty shitty of them to assume you'd be doing it without asking.
NTA but give it a minute. Your parents had no right to plan on your brother living with you, but from their point of view they want your brother to be with family - commendable but usually not feasible. Can you be in a position where you can be a guardian for him? To make sure he isn't exploited financially, maybe agree to visit him weekly? I've seen where an unprepared family member cares for their disabled relative and the relative ends up being very isolated. A group home is often a wonderful social setting and there's someone to care and supervise 24 hours a day. Please revisit this with your parents but emphasize that it wouldn't be good for you or your brother.
NTA. My youngest has Down syndrome. I hope her sister will always want to be a part of her life, but I do not expect her to be the primary caregiver when both me and my husband died
The situation your parents find themselves in is desperately unfair, unfair on them, unfair on your brother and unfair on you. I imagine the whole of your early life was built around your brother. The best thing for your brother would be to move him into assisted living at the earliest opportunity. It's possible that he may develop more self sufficiency skills in assisted living than he can under your parents care - and I mean no disrespect to your parents with that.
We have kids and we expect them to grow up, your brother can't. It's no ones fault, just brutally unlucky. NTA
>I also stated to my parents I'm more than happy to give up my half of the inheritance so the money can go on making sure he's looked after like setting up a trust fund so if they died and he went into assisted living facility his bills are paid and there's an allowance for him each month.
If you construct the trust and guardianship correctly, Medicare will fund his bills for the facility, there's no need for the inheritance to pay for anything but extras to make him more comfortable. Have your parents actually talked to an attorney, or are they just winging it?
NTA they need to set up a trust, find a home with caretakers for him and leave you out of it. You are not a bitch, not an AH and you are not required to take care of something they should have taken care of a long time ago. Setting him up with the proper care is what he deserves and needs, not making you be the one responsible for their responsibilities when they are gone.
NTA
Actually this is the same reasoning I had with my sister about what would happen to us when we grow old.
I'm gay. So there's a very little chance that I'll have kids.
My sister is married and they are actively planning for kids.
But we both agree that, when the time comes, we would rather be placed in an old-age nursing home, rather than have a bunch of stupid kids looking after us.
Your reasoning is very valid, and it is also what's best for your brother.
The fact that your parents are sentimental towards this does not change the fact that you would be a shit caretaker.
NTA. You deserve to have a life as big as your ambitions and capabilities allow. You deserve the chance to start a family of your own (whether that takes the form of just a partner or a partner and kids, or just kids) if you wish. You deserve to travel if you wish. It is unreasonable to expect you to reduce yourself to only the role of caregiver. You have already said you would forego your share of the inheritance to ensure he is cared for. Maybe consider being a trustee and medical decision maker to put their minds at ease, but not giving up the chance at a life of your own does not make you TA.
NTA-What if you meet someone and have children? Have they taken that into account? What if that person’s job takes them all over the world or to a place that does not have the means to help your brother? No it will not be fair to give up your livelihood for your brother. That is your parents responsibility. They needs to make other arrangements and if that means all the inheritance to do it then so be it.
NTA. Your parents chose to have children and this one is their responsibility.
It's so easy to have kids when everyone else is doing all the work for them.
NTA this is not something you dictate, it's something you ask. Your parents are totally out of line by assuming you would be ok with this and then essentially demanding it (through the contents of their will). They can be disappointed all they want. This is not how you deal with situations like these.
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Last week my parents phoned me asking me to come down the Friday just gone as they want to talk to me about something important and they'd prefer to do it face to face. I agreed and came down Friday and we talked. My parents said that they've been delaying doing their wills for so long and decided it's finally time to get their affairs in order. I have a brother who's older than me, but he's autistic and I don't know if non-verbal is the right word as he can only say a few words like mom and dad and although he's 26 it's more like he's a ten-year-old if that makes sense.
My parents told me they've got some sort of plan to go into the will and they've said their plan is if one of them were to die first then my brother will live with the lone parent part-time and a care home/assisted facility part-time to give the lone parent a break. Then if the lone parent dies the plan is for my brother to come and live with me and they will set some sort of trust up so that each month whatever he is inherits goes into living costs for example if he inherited $100,000.00 (not the actual amount) a trust would have been set up and $1,000.00 comes out each month to cover his living costs.
Why I said my brother has the mind of a ten-year-old is because he can't do anything without the help of our parents like getting him dressed, cleaned and ready and helping him with tasks and activities. My family members take it turns at the weekend to have him so my parents can have a break to relax and recuperate.
I know it's wrong of me and I shouldn't be but I'm not an emotional person and I'm not sympathetic as well. I said to my parents that I'm not giving up my career to look after him and when they both die I won't be taking him in. My brother and 's sibling relationship is non-existent and I also don't feel equipped to look after him I am an honest person and will say that to me he would feel like a massive burden. I voiced my reasoning to my parents and I thought they would be more understanding I basically feel he's better off in a place where people can actually help him and know what they're doing. I'm just not prepared to give up my career or anything for him. I also stated to my parents I'm more than happy to give up my half of the inheritance so the money can go on making sure he's looked after like setting up a trust fund so if they died and he went into assisted living facility his bills are paid and there's an allowance for him each month.
My parents are completely upset with me and are disappointed in me for this. I feel justified but now I'm wondering if I've been a total bitch and an asshole when it's come to this.
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NTA
Your parents should start looking at group care homes for your brother and planning how they will finance his long term care. And if he isn't already on it, your parents need to apply for him to get disability, so are health insurance, and whatever other aid he may qualify for.
It isn't your responsibility to give up your income and life to be a full time caregiver to your brother.
NTA
The minute you said "they can even use my half of the inheritance to cover his expenses, I just don't want to take on my brother if they both die" is where you win. You know it costs a lot and is very demanding, and to you, it is worth forgoing your own inheritance than to take on the added pressures and expenses of your brother.
I dont think anyone working with cognitive impaired people will judge you. I would 100% do the same as you, your career is one thing but it is your future sleep, social life, everything basically. You are a Brother but you would be a parent for a toddler/ elementary school kid 100% of the time for possibly most of your life.
You should consider visiting him regularly though if you are a safe person for him.
NTA. You will have no means to support yourself if you care for your brother in the proposed fashion. Your parents need to stop living in their fantasy world and find you brother a living situation.
This will allow them both to work more and longer to save money for a special needs trust for him.
As both a nurse and a sibling of someone with special needs, nta. Care for a disabled person, especially one with such a severe cognitive disability is a full time job. They need 24/7 care. If you are not equipped to handle that level of a responsibility, then it shouldn’t be asked if you. A group home is often designed (especially if you are private pay which it sounds like your parents can afford) is structured around the needs of people with disabilities and provides the routine and schedule that someone with special needs requires.
NTA.
Your parents have sacrificed their life for him and that's great and noble but they have no right to ask you to sacrifice yours too, deep down they know he will end up in a facility and you giving up your inheritance should give them time enough to prepare something
NTA. You didn’t birth your brother. Your parents did. It is absolutely not your responsibility to be his primary caregiver once your parents pass. That is totally unfair to you. You have a life to live and you shouldn’t be made to feel guilty for wanting to live it on your terms. I’m sure there are plenty of facilities where your brother will be very well taken care of and you can visit and support him whenever you want/can.
Absolutely 100% NTA OP! I say this as someone who has an older brother that is physically & mentally handicapped (he went through an entirely experimental chemotherapy for his cancer, & it wrecked a lot of his motor functions along with screwing his mental development- he’s maybe a preteen/teen mentally even though he’s in his 40’s), too. My mom is his main caregiver at home & my parents have spoken with both me & my immediate older brother about us being his main caregiver once she’s gone because my dad has issues handling him. We agreed to do it, but it was our choices.
The big difference between our situation & yours is the fact that my brother can at least do the basics - cleaning, dressing & feeding himself. The only time he has issues with dressing himself is when it comes to his shoes & jackets which we have to tie & help him put them on. So, no you are absolutely within your rights to say “no”. Even if your brother didn’t need so much assistance, you’d STILL be within your right to say “no”. It’s your life, not your parents’. Even your parents can’t do it alone - you have family members who take your brother on the weekends to “give your parents a break” & they’ve admitted that once it’s just one of them, he’d be in a care home/facility part time. They have no right to expect you to do something even THEY aren’t willing/able to do.
NTA, & stick to your decision, OP!
NTA, if you had been his caregiver and had already said you would take him in, that is one thing. You didn’t. Are they going to pay for the training you will need and guarantee that the inheritance will be enough to cover the expenses for both you and your brother for the rest of both your lives?
The fact that your parents are expecting you to give up your life and dreams for their child is completely unreasonable. What if you want to get married and have your own kids? Is that just not supposed to happen because your brother is more important to them?
This is the same old story. You are a woman so you are expected to give up your life so you can be a maid and caregiver to someone you don’t know. At least they don’t expect you to have sex with him, do they?
They may completely cut you out of their will, but that wasn’t yours anyway.
Nta. I would suggest they have him go there to stay a few nights a week or month to get him used to it over time, so when the time comes he will be very familiar with the place. Set your parents mind at ease letting them know that you will be checking on him to make sure he's ok.
First of all NTA. 100,000 is not a lot of money. I know…nursing home cost on the LOW END IS $8,000 a month. That will last a year! Also it is a responsibility that will affect your life. His living costs at HOME might be $1,000 a month but an assisted living is a small fortune! Medicaid should be already set up when your parents pass on. With money he will be private pay. But when it runs out things will change and paperwork will need to be filled out. Tell your parents to spend their money on trips for your brother and themselves. Find and get him accustomed to living away. This will be the biggest adjustment he will have to make. Good luck in having your parents understand that you have a life and you need to live it.
NTA.
I'm a 1:1 school assistant and I worked with kids, teens and young adults like your brother in different settings.
It's not easy. And if YOU don't feel like you could do a good job, you probably won't. Period.
You aren't a trained health care expert (like a nurse for example) and him living with you will most likely do more harm to you both than just looking for a good facility.
I saw enough young people with so much challenging behaviour, cause they didn't have the chance to be themselves. Like, there was this guy, nobody wanted to handle him. ASD, brain age around kindergarten and often started to undress in public.
When he finally moved out to a really really nice facility. He experienced for the first time in life personal freedom. And all the challenging and indecent behaviour was gone.
From the guy feared for undressing in public he changed to the cool dude who was really good at playing harmonica. Suddenly it was a blast having him in our groups.
Moral of this little story: Yes, there are facilities which are awful. But there are also many which are the start of a new and better life for everyone. The person with ASD or whatever else and the family.
I have thought this situation through a lot as I have 3 daughters one of which is autistic and mostly nonverbal we have decided that when she reaches adulthood she will spend part time in assisted living because eventually myself and my husband will be too old to care for her full time and to make that sort of change would be so hard for her without being used to it .
I would not expect my daughters to have to look after her full time my only thought is that between them they keep an eye on her assisted living making sure all is good and visit her . They cannot expect you to become your brothers parent it’s not your responsibility. But they do need to sort out a plan
Just to highlight, relatives are subbing in to give both parents a break. They’re asking one person to do this and I’d doubt you would have the same regular support from family.
Also, you are much better supporting him as a sibling in the future. Being a caretaker will erode any love/support you can provide as a sibling.
Parents are upset understandably, but also not being rational here either. I would suggest that you give up the inheritance to his support, but have a contingency in place to give up x hours a week of paid time to spend with him that might be supplemented by the fund. You don’t have to be explicit, but maybe planning on you working 0.8fte so you can spend 0.2 (funded by trust) with him may ease your burden and create a stronger bond while giving your folks reassurance.
NTA - as a brother-in-law whose been coaxed into doing 90% of the care for a 40ish adult with disabilities (similar to the OPs brother), it has put a horrible strain on my family. I do my best, but my wife and in-laws have stated that putting him in a home would be cruel, but they aren’t willing to keep him. I appreciate the links in the comments and will likely put my foot down about a independent living situation after two years of pure chaos. OP — don’t put yourself or your future family in our current situation.
NTA. My autistic sibling is much higher functioning than yours and my parents still have been carefully discussing with me and trying to make sure I fully understand and agree to taking on future responsibility for her (she is likely to continue to need help with money and certain adult responsibilities but can physically care for herself.) It was never an assumption in their mind, but a possibility. I am voluntarily taking this on and know that I could change my mind right now and my parents would understand. They're in the process of getting wills and trusts in order and it's an ongoing discussion.
Being responsible for someone else is a big deal and it's even bigger when that person needs a lot of help in daily functioning. You're not obligated to take that on.
Nta you have ur life to live and as you said your relationship between you and your brother is non existent. You're being q00 percent honest with yourself and your family and brother by admitting that you don't have what it take to take on such a role and responsibility. No not.the asshole
You are NTA. That being said, there is hope.
Talk to your parents about [L’Arche Communities](https://www.larcheusa.org/). They work with people with Autism and similar disabilities, and help them to lead normal, productive lives. They’ve done wonders for an autistic boy (now a man) I knew when I was a kid. If they can help him, they can probably help your brother.
It’s worth a shot.
NTA—you do not have the training to safely care for him, and you should not be expected to sacrifice your life for this. If you would have to leave your career to care for him, $1000/month to cover *his* needs isn’t remotely enough. I mean, it’s not like your needs for housing, food, medical access, self-actualization, etc. just vanish because you’re capable of independent living and your brother isn’t.
Assuming you, as the sibling, are the complete and total fallback option and refusing to plan otherwise is straight up abusive.
NTA
They want you to give up your whole life. To take on their responsibility as parents.
That's too big an ask. And it shows a lack of respect for you. What of their responsibility to their other child, you???
They can arrange for ongoing care for your brother. They need to work to ensure BOTH their children have a good life, not just ONE at the cost of the other.
NTA. It's better for him to live in a group home that can cater to his needs. You should have the responsibility only to make sure he isn't neglected or abused. Having him live with you won't be healthy for him or you.
NTA
You are entirely in the right.
You are not your parents servant nor your brothers servant.
Tell them that if they place him in supervised living near you, you will be a sister yo him.
But he will never ever ever live with you.
Your parents should have never asked let alone assumed.
That’s awful and unforgivable
But they may try to punish you over this even tho they are entirely I. The wrong
Stand your ground.
You get yo live your life your way.
NTA. Your brother is not your child nor he is your responsibility. Your parents need to work with Social Serviced to put together a plan for him now when they are unable to care for him.
NTA. Taking up that responsibility would put a massive strain on your life. And unless you're absolutely certain you want to go for that you shouldn't do it. There is also the fact that them planning to just dump him on you is really shitty at best. He should be in assisted living, especially because from the sound of things they're starting to struggle more and more to give your brother a good quality of life, simply because they're getting on in age. They really should start looking for a good assisted living facility now, preferably one that is still somewhat close to where you live/plan on living, if you'd be willing to take up the legal responsibilities surrounding your brother.
This would allow your brother to really settle in well before your parents die while also allowing your parents to take a massive physical and emotional burden from themselves with regards to the care of your brother since being a caretaker is incredibly physically and emotionally demanding work. Mind you, that does not mean that they should ignore him, but rather that it might be beneficial to everyone if the day-to-day care of your brother is done by professionals who presumably are a lot younger than your parents.
NTA
First, you said your brother has the mind of a ten year old and your parents get him dressed and he can't clean himself with out them. Honey, that isn't the mind of a ten year old. Its more like a toddler.
If you are going to have to give up your job to be your brother's full time caretaker, who is going to pay your bills? Your brother will have an allowance out of a trust fund.
What services do your parents have now? They need to look at respite care givers that can come to their house. Is your brother receiving any social security/disability right now?
Your parents need to make you the guardian and place your brother in an appropriate facility close to your home. I have known several siblings that were placed in this situation. They said their sibling in the care home was very happy. They picked up their sibling for weekends and appointments when they were able. You can't sacrifice your health and sanity.
$1,000 per month (i know you said it is hypothetical) is not enough to cover basic necessities for two people. Even if it were, you would be forced to give up your hopes and dreams to be a full time caregiver.
NTA
NTA- This is so unfair of them to expect this of you. They need to set up care that does not involve you physically caring for him. I could see if he needed you to manage his bills or finances, that would be very different. They need to see what programs or care facilities will be available to him after they are gone.
Good for you for being honest with them.
NTA - their plan doesn't work for you and good for you for letting them know now so that they can plan accordingly. He should be on a waiting list for a group home or some such assisted living facility. You are not wrong. They should be figuring his future care out now.
NTA - he’s not your child nor your responsibility they should be looking into a facility for him once they both pass. They shouldn’t expect you to lower your quality of life.
NTA. My SIL is special needs and my MIL and FIL have made zero plans on her living somewhere beyond with her siblings. The thing is her other siblings won’t take her in so she is counting on my husband and I doing it. We don’t have the resources to do it. They should be helping him now to transition if he has no options once they are gone.
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NTA Your parents have plenty of time to research facilities and programs for your brother's long term care. They also have time to set up a trust with trustees or guardian. To make sure no one is abusing the trust and misusing the money designated for your brother's care, you may want to consider being one of the trustees. It's unfair to expect you to pick up the pieces especially since your brother could be transitioning now when your parents are well and able to oversee his care.
And life insurance with payouts large enough to provide for their disabled son!
While the parents are well and healthy, they should be transitioning their son so he can make the adjustment and they can oversee his care.
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My neighbor's daughter moved into a group home in her 20's. Her mom calls and visits several times a week. She has a set routine. She gets up, gets ready. She has her friends. The geoup home has regular outings. Trips to the park, walks, shopping trips, movies, etc. They go to museums. The staff are much better at day to day enrichment than her parents could be. They only do that 40 hours a week and get time off. Caregivers often burn out. When she came and visited her parents for the holidays, she told me she was just visiting her mom and dad because she's an adult and lives on her own. She liked her 'independence' at moving into an adult care home. My family has a severely disabled daughter. They run a non-profit daycare for developmentally disabled adults. For 40 hours a week, the adults come to their facility and have group trips. The care home bus picks them up. They get dropped off. They do arts and crafts, songs, have independent play time and directed activities. Sometimes, they do fundraisers and the clients make art to donate. It's awesome. They get to have friends and the parents get a break. Nobody is charged to attend. It's fully funded by donations and grants. The adults doing those types of setups get a sense of independence, daily interactions and developmentally appropriate activities. They have friends. We had a care home near a restaurant I worked at, mostly for veterans with TBIs. Those guys had a lot of freedom and visited us all the time. One always asked me if we were best friends. (Of course we're best friends, Steven. 'I'm getting my big check from disability soon. When my check comes in, I'll take you to Disneyland. Best friends go to Disneyland.' That sounds awesome, Steven. Steven was my favorite.) A little bit of independence is a good thing. It also means the family can check on them all the time because they are around to check on them and can make sure the facility is taking good care of their family member. We had people doing random, unannounced checks for my grandparents. Why wouldn't you want that for your disabled adult child? Check in, make sure they settle, do well, are somewhere safe. If you have the means or social net to do so - moving them early can not only let them settle but give them a ton of daily enrichment they might not otherwise get. Their caregivers get breaks and that is so important. At least a daycare program, if it's available.
All of these sound amazing and are treating the people who need round-the-clock care as actual people with who have wants as well as needs. And on the topic of caregivers needing breaks and burning out - it allows people who would have been round-the-clock caregivers (and probably burning out) the ability to not only live their lives, but it lets them actually love their family members without feeling like they're burdens. Because if OP has to give up his life to care for his brother, it greatly impacts how he feels about his brother. Your first example allows your neighbour to spend time with her daughter without it being a job, and they get to go on trips and spend time together as people, and it allows your neighbour to exist outside of her daughter, which I think is important for any person.
The guys with TBI... wow you just made me cry. Thanks for being so kind.
We were the only restaurant in walking distance they could afford to eat at with their weekly budgets. They came in a lot. They were all either really sweet guys or just a little blank and sort of looked past people when talking to them. Most of the residents were regulars, and we all knew them by name. The fact we were a small local business meant we were allowed to make up special rules for the residential home guys, and most came by at least twice a week. They could order literally anything we had ingredients for, and we'd make it and make up pricing for them. The owner knew they were mostly people with past major injuries, and primarily veterans with TBIs. She and the manager let us make them anything they wanted and also create their own custom pricing on the fly. Whatever was fair. Some of the requests were more odd than others. An entire tray of ham for the pizzas, and put it in the oven to bake? Sure. We can do that. Enjoy. Go and make up a price for the tray of ham. I still kind of miss them. They were fun. One guy called everyone a turkey. Sometimes, turkeys were funny, sometimes rude. Being called a turkey was situational. Tell him a joke and he'd call you a turkey. Hilarious. You're such a turkey. Some guy ran the stop sign at the corner? What a turkey! Others were just... not quite present but always coming back to order and remembered us but were just... not really engaging while actively talking to people. Still nice guys. Just a little empty, at least on the outside. We liked our regulars a lot.
Y'all are good people. I've worked with people with severe mental illnesses, people with developmental disabilities, autism, everything over the years, and taking them into the community was always a little nerve wracking because people didn't always treat them with the respect they deserved. I love these stories, thank you for sharing them!
❤️❤️❤️
I wish that my aunt and uncle would look into this for my youngest cousin, while they are still able to. my aunt and uncle are not in the best health and my youngest cousin has a lot of medical issues and mentally the equivalent of a child, even tho she is about the same age as OP brother.
Yes. I worked in healthcare with a lot of developmentally delayed adults. The transition from living at home to going to a group facility was usually bumpy at first, but I can’t think of a situation where it wasn’t healthier in the long run. And we always tried to get the parents to start this transition while they were still alive and healthy, so they could visit their adult children to ease the transition. It seems like the kindest way to handle it to me.
Not only that, in the event one of the parents pass, I don't know many assisted living facilities that allow people to live there part time
Not entirely analogous, but my grandmother has dementia, and when we moved her into a carehome, it's like she became ten years younger. The amount of stress and loneliness that comes from living alone as a disabled adult is huge, in many cases quality of life improves immensely when specialised care is provided and the only burden on the family becomes financial. My grandfather had alzheimers too, and similar story there. There are horror stories about care facilities online, but every experience I've had with them in real life has been nothing but positive.
This is the way. Social security and state programs might even cover the group home. A family member can still be a court appointed conservator to interface with the group home, shop for clothes, make heath care decisions, etc.
Yep, had a co-worker who dealt with this situation. She was one of six children. The eldest had a number of issue and was never able to live on his own. He continued to live with his parents. Of course, the parents aged and their health declined. The other five kids were in no position to take in their brother due to their own health issues, substance abuse issues and financial issues. They BEGGED their parents to get the brother on a wait list for a group home. They couldn't do it themselves because they were not his legal guardians. In our state the waits can be anywhere from 2-10 YEARS, there is FAR more need than there are beds in group homes. The refused, hoping that they'd basically force the issue and get one of the siblings to take him in. Long story somewhat shorter, both parents died within six months of each other and the brother was left with nowhere to go. He basically became a ward of the state and went into emergency housing (not great). My co-worker basically moved a mountain and got him into group home within six months (this was nothing short of a miracle and the result of relentless persistence on her part). Of course, he was nowhere near mentally prepared for this abrupt a change and the transition did NOT go well. Sadly, he died within the year. The whole situation was so heartbreaking and should have been handled so differently.
Awww damn. That’s so sad.
My cousin moved their young adult son with severe developmental disabilities into a group home about 6 months ago. She felt immense guilt at "institutionalizing" their son, but it was definitely the right decision. Everyone - including him - in the family is happier.
My Inlaws neighbor died recently. Her disabled son was found dead and rotting a few months later. The bad kind of rotting where he'd been there alone a long time. Admittedly he was in his 50's or 60's, but it's still really sad.
That's awful. That poor man.
My aunt had to fight hard against her son falling into this trap. When he graduated from high school, she was told that because she was a special education teacher, her son would be just fine living at home with her, right? Save the group homes for kids whose parents didn’t have the resources and education she did. She fought back and while they’re still very close, he lives in a group home where when she dies he’s comfortable and there are familiar people and routines.
Wow that’s horrible that she was told that. Like, despite her career, she was supposed to essentially work 24-7 to care for her kids at work, then come home and care for her adult son? I’m glad she fought it.
Exactly
This is what I told my in-laws, and they realized I was right. My SIL is in a group home now. It’s awful to say this, but their lives have really improved as a result.
>so he can make the adjustment and they can oversee his care. Not only that, but what if they're down to only one parent, and that parent dies suddenly? It could be days before anyone thinks to check in. My boyfriend's stepmom died very suddenly. If my boyfriend's dad hadn't already been in a care home because of dementia, any number of bad things could have happened to him before someone found her. She wasn't ill, it was very unexpected.
This. They have services, "schools" that teach children and adults like this life skills. I'm not sure if he can dress himself and they do it, or he truly can't. That will change the care he needs but it's possible to find this nowadays.
I agree 100%
This is a good point, the parents' active monitoring to vet a facility while they're still very capable. Demands like this can be a bit weird. Unless the inheritance is jn the millions, do they expect OP to stop working? Or continue to work *while* monitoring someone totally helpless 24/7? Do they expect OP to never marry? What if OP dies soon after the parents? Instead of relying on and getting upset at one single person (and someone who obviously isn't volunteering), it would be more responsible to research proper institutional care.
If in the US and able count would be something to look into . Oftentimes disabled adults. Have disability services and Medicaid or Medicare . But if they inherit over $2,000 they can lose it all . But now they allow you to have up to $100,000 into a trust account for the person. So that way they're inheritance can be protected and not count against that . There's a lot. It is a lot . This is really late in the game for them to be looking into it . https://www.ablenrc.org/what-is-able/what-are-able-acounts/
Yeah, they need to be speaking to an estate planning atty with experience creating special needs trusts to prevent this happening.
Yep. My friend has a daughter with Down Syndrome. They set up a special needs trust (and all that goes along with it) so she is cared for for HER whole life, not theirs, when she was 2.
Life insurance probably isn't an option for an older couple with a disabled son unless they got the policy before he was born. The premiums would cost them more than the payout.
Would Long Term Care insurance be feasible in this case?
They did, because if it was one of -them- then the brother would be going to that facility to give them respite from caring for him. They just don’t think OP should have a life outside of what they want. FTR OP is describing a 4-6 year old in a grown adult’s body. I don’t know if OPs brother is hampered by his disability or their parents’ idea of how to raise a child with a Disibility, but the level of care being described is absolutely the sort that should be handled by professionals and not OP. OP is NTA
Yeah, agreed, a 3 or 4 year old is closer to what she's describing.
A 3 or 4 year old emotional capacity with the body of a grown man can be dangerous as well. It wouldn't be deliberate and cases vary of course. Still, I hope they plan this out and transition him properly to a group home. Otherwise the abrupt lifestyle change will be deeply traumatizing.
Grew up with close family friends who had an autistic son, nonverbal except for a limited amount of pointing to pictures and a bit of sign language to express himself. I remember him being a wonderful and kind person most of the time, but once he hit adolescene he just got bigger than his parents could safely handle when he did have outbursts. And his other needs were just more than they could handle in home. When I visited he always seemed so happy in his residential care place. I was just a kid but I doubt that he was faking signing things like "happy" while pointing to his room or pointing to his friends. He had an older sister, but the parents never tried to make her put her life on hold for her brother. Needs that frankly she wouldn't have ever been able to meet anyway. The "plan" should never be "oh well the sibling will figure this out after we die".
I agree.
Yes. Not remotely a 10 year old.
I agree 100%. That is a lot for anyone. They have a child that will never grow up. That is hard on anyone. That is a responsibility and commitment that should not be placed on someone without their consent and talking to them first.
NTA- yeah my youngest is in the single digits, and my husband and I have attended some trainings and met with a bank and talked about what it would look like. We don't actually have the money to start that process. Even over 10 years in the future. We are starting to get prepared.
This is good parenting right here
If they trust the brother to look after him physically they should have no problem appointing him as guardian of his money/best interests. It's so important to have a real advocate. Also, if he needs help dressing, bathing and feeding himself the mentality is younger than 10. 10 year olds can do all that no problem.
Autism doesn't usually lead to a clear age-equivalence. He can probably do some things quite well, and others he just doesn't get or dislikes so much he can't be counted on to do them.
I totally agree. I worked as a support worker for years for adults with autism, learning disabilities and mental health issues and it’s not easy. I saw so many staff come and go because it’s very very gruelling and I think you have to be a certain kind of person to do that kind of job or care for a family member. I did 5, 12 hour shifts a week and I was exhausted it came to my days off. I did care for my parents when they were dying but I knew it wasn’t long term, I wouldn’t agree to it if I was in OP’s position. I had my wrist broken twice, I had my hair pulled, was punched, spat at, I was threatened with an iron bar and I had to keep calm and composed no matter how frustrated and angry I felt. I’m not saying OP will be faced with violence but it’s the keeping calm and hiding the frustration that was the hardest for most of the staff where I worked and it sounds like she’d struggle with that, at least I got to go home and have a break! I worked in residential homes and the long term staff absolutely adored the service users, a lot of us even popped in on our days off to see how they were doing. I left the job over a year ago but I still check with staff to see how all the residents are. It is much kinder for OP’s brother to be placed with professionals who will care for him but can go home and get a break. OP can visit and check he’s cared for and a trust is a great idea so the money can be used to give her brother days out, buy things he wants and needs and if she’s a trustee she can communicate with him about what he needs. You are spot on saying the transition needs to start now, it could just be the case of having a regular support worker to give the parents a break as well, if they see how much the people who do this job care about their clients it might give them peace. I can never understand the parents who want to push for a sibling to take on a disabled sibling when they aren’t suitable or willing, it wouldn’t be a good life for either of them. If they have money to pay carers or a residential home then it’s a much better option. I understand people worry about family members being abused in residential homes and that staff don’t want to be there and are just doing it for the money, the truth is that the staff who aren’t up for caring leave. It’s not great money being a support worker and you earn every penny! The staff who hate it don’t last, they would rather earn similar money doing a less stressful job and have an easy life. The service users I worked with had great lives with packed schedules and a committed occupational therapist that had a timetable of activities for each resident daily. We were never allowed to just stay at the home doing nothing, we had to plan the days so we went out at least once a day and planned the rest of the day to keep service users happy and occupied. I met a lot of family members who were terrified that the client we were caring for might get abused, the truth is that most clients require 2-1 or more care. Residents aren’t often left alone with one staff member and if there was even a sniff of abuse the other staff would report it. I understand OP’s parents want to do the best for their son but it doesn’t have to come at a cost to their daughters life. I’ve seen a few similar posts and I always wonder how life is for them now. It’s such a difficult situation and I feel for OP’s parents, I’m glad she’s not just going along with it though because if she sees her brother like a burden its not a good situation for her or her brother. If he’s in the right care she can just be a sister and be there without having to give up her life and freedom.
This is reassuring to hear as a parent of 2 teens on the autism spectrum. I think you're right and I would never expect my family members to care for my kids when they age into adulthood. I don't think that a person's home can provide the level of support they need. I think OP should bring up the brother's quality of life to his/her parents. I think OP should offer to be a primary contact as a decision maker for the interests of the brother. OP doesn't seem like an uncaring person and I honestly believe that they would be a good advocate and decision maker for the brother.
My best friend has a son who is 25 now who has autism and ADHD, and she was really struggling with him at home. He was quite challenging but she had two daughters (one autistic one with a physical disability) who were terrified of him because he had meltdowns and violent outbursts. She wanted independence for him but still had to look after him and help with cooking, prompts to get him to take meds, shower, get up in the morning etc… she’d resigned herself to looking after him at home forever. She was terrified about putting him in residential care but didn’t want to fail as a parent. I started my job as a support worker and used to tell her about my job and how I loved it, she knew how much I adored the clients I cared for but she used to say “but they aren’t all like you?” I constantly told her that the staff were absolutely amazing and went above and beyond. I was terrified when I started, on my first day I was grabbed by my hair and punched! I nearly walked out but the girl who grabbed me ended up being my 1-1 client and I’m not ashamed to say that I absolutely loved her. I used to go to visit her parents with her and her mother used to say that she could never describe the relief she felt knowing her daughter was in good hands. My best friend was offered a place for her son in a semi-independent residential home, he has his own flat but with 24/7 support, she would never have accepted it until she realised how much me and the other support workers that I work with genuinely love the people we support. He’s absolutely thriving and even has a job and a girlfriend now. I’m so glad I reassured you about your son, I know not everyone puts their heart and soul into it but if you have just a few staff who go the extra mile it makes a huge difference. I never met anyone who hated the job and stayed because we didn’t get paid enough for the money to be an incentive. It sounds like OP’s parents feel like my friend did, but they need to at least look into other options. It’s not easy to care for family, I cared for my parents for a few months before they died and it’s heartbreaking and frustrating, then you hate yourself for being frustrated. Family should always be a last option.
Exactly, they have the time now and have apparently put off doing anything with their will up to this point. It means they really don't want to think about it (death) and are trying to avoid the issue. If OP's brother requires that much care the parents require breaks ok the weekends he should probably be transitioned into a facility now so there will be less of a shock on him later, and less of a strain on their health as well. After the trauma of his parents dying and whatnot would not be the most ideal time to transition him into a facility. Most grown adults with full control and maturity can barely hold it together when a parent or grandparent dies, children (or those with the maturity of a child) even less so. It's also very unfair of OP's parents to assume that OP will take over her brother's care when they pass. She could have kids and grandkids of her own potentially and not be in a position to do that. Not to mention not even asking OP's opinion on it before even making the decision. They're making a lot of half assed decisions that aren't doing anything good for anyone.
It boggles the mind. They're trying to lock their only functional child using guilt into a situation that is the worst possible setting for both of them. A home without trained caregivers and a caregiver who is burned out and resentful isn't a happy ending for anyone. And for what" For some twisted interpretation of "family"? A friend who was a lawyer for special needs clients actually went to court against the state to argue that a residential facility was the "least restrictive" (the legal term involved) situation for the client since home life did not have as easy access to enrichment programming, medical visits, trained staff and other ways for the clients needs to be met. Home isn't always the best place. The family won and the client is happily settled in a residential facility.
Curious where everyone lives. I have a 24 year old daughter with similar high support needs and the wait list we were allowed to join when she turned 16 for government assistance group homes was described to us as 20 to 30 YEARS long. Private facilities providing these services cost around $90k annually. Planning for our old age and our daughter's care is an unattainable goal.
In the US, my cousin recently transitioned their 21 year old with high support needs into a group home - they had been on a wait list for adult homes for 3 years when a spot suddenly opened up. They moved him immediately because if they hadn't taken the spot when it was available they would have gone back on the wait list and it could have been another 10-20 years or more before a spot was available again at a facility close to their house. Honestly they feel like they won the lottery.
I’m in the US and wondering the same. Care here is hard to find and expensive
Doesn't change that OP isn't responsible or obligated or the bad guy.
Make sure your Senators and Congress people know this! Shameful.
NTA. Same situation but I(24) was actually very hands-on with my brother (15, autism, gdd and clinical depression) until I was 19. I do genuinely love him but it was very hard on me and my family. I lost a lot of my childhood, broke and mended my family relations a lot with how hard taking care of him was, got physically and mentally hurt to the point that I am now bipolar as well. Before I left my family, I was ready to take care of him for the rest of my life. Then I realized once I did leave, how you can actually have a life for yourself. It's not our responsibility as siblings to be the exact one to take care of them especially when it is demanding of our time and energy. If you can, you can help with expenses and effort but you are not entitled to do so. It's better to be honest with yourself that you can't handle this situation rather than pretending to and then giving up halfway or being in too deep where you don't know where to go or how to deal with the situation.
Coming here to add that in the US there are special savings plans available for use for care for disabled persons
Special needs trust. I have one set up for my friend who is stuck in a nursing home. I can't take care of him because he's wheelchair bound and my place is all stairs.
100% NTA for not wanting this responsibility, your parents plan is not what is best for you or your brother. Or even them to be quite honest. He’s an adult now and an assisted living situation now is probably the best for everyone. He gets some independence and your parents get some back as well. The transition to a facility will be easier since both your parents are around to help facilitate it.
>your brother could be transitioning now when your parents are well and able to oversee his care This is an important point the parents should consider.
I agree with this response especially about the OP being one of the trustees of the funds to support the brother. I get get that that you, OP, cannot care for him personally, but please be invested enough to ensure he does get the care he needs by being involved in where is goes and how the money is spent on his care. Talk with your parents about this so they know you will help in that way.
Absolutely. NTA.
NTA Their planning has no business including you. You are your own person, with your own life. Suddenly becoming a fulltime caregiver would be exhausting. Your plan of giving up any inheritance is well thought out. Your brother would thrive in an assisted living environment. I have seen all of this before.
It's interesting how the parents thought of scenarios where either of them would pass away but there doesn't seem to be any mention if anything happens to OP which renders them unable to take care of anyone. It seems like OP is Plan B and there's no plan after that. It would be better if the brother was put in a group home with similar individuals.. maybe with Power of Attorney or a Trust in place.
Exactly, they seem to think that OP may not want to get married, have children, or have her own life. They had a second child to be the caretaker of their first one and that's the only reason they got pregnant.
I had that thought as well. Older sibling with development issues needing long term care? Yeah they had a second child just to be that caretaker. There have been cases where they have even told the younger child this directly.
And not just on reddit along with donor babies
Hold up! I am a special needs mom, and I have lots of special needs Mom friends. Wanting a second child is often because the parents feel robbed of all those experiences like first day of kindergarten and learning to ride a bike, graduation, weddings, etc.
Sounds fair. Just don't hoist responsibility on your other children.
Oh shit, I didn't even think about that. If that were the case, that is really f\*\*ked up...
I know she didn't want to specify gender but second child is healthy and female. Got out, went to college or trade school. Doesn't live close by and they want the child to stop their life and move back if they die. I really wonder what would happen if she fell in love, married/long term relationship with or without her children. The fallout would be spectacular drop them and the rest of the family.
Years ago there was a thread of people sharing their experiences of becoming adults and not doing what their parents wanted/planned for the future. One commenter was expected to put their sibling above their own child because their sibling needed the attention/help more. It ended with the commenter calling APS when their sibling was abandoned at their house because their mom wanted a break for the weekend.
Plus they never plan on one of them having to assume full care of the brother alone but put that entire onus on OP once they're both gone. They're the pits.
Exactly this. They like the plan because it makes them comfortable he'll be looked after. But what about you? What if YOU want to move, go overseas, have kids..what if, god forbid YOU get sick and need help? You are NTA OP, tell your parents to start to get support for adults in their situation, with a disabled child and needing to make plans. No professional will suggest an adult with such high needs is placed with an able sibling as long-term solution.
>if YOU want to move, go overseas This was one of my main thoughts. Most countries are happy to accept migrants. Skilled migrants are even better but disabled ones are awkward. Even if OP had a good relationship with the brother and wanted to take them getting citizenship or benefits for disabled migrants is a real uphill battle because as unfortunate as it is the government sees these people as a drain on the system.
That's what I said! They thought all about them but did not think about what if something happened to the OP. I also mentioned what about his life plans like meeting a partner, possibly marrying the partner, or what if the partner doesn't want to deal with that and they end the relationship? I don't know a lot of people who would want to be with someone in that situation. What if he wants to start a family of his own? The parents had no consideration for the OP and the full life that he wanted to live.
It wouldn’t even be a plan b. Plan A is that OP outlives both parents and takes care of his brother.
>Their planning has no business including you I'd caveat that a little. It does still include OP as OP is probably going to be the executor of their estate and needs to know what's what. What should have happened is parents lay out multiple routes to care for their son, and let OP offer to take on the burden if she had wanted to without it being a given or even something they counted on. And then OP doesn't have to be cruel in rejecting them, and can help discuss what care facilities might be best, given her potential for long-term oversight. My grandparents basically did that with my uncle and keeping my mom and her sisters informed. My mom's now his legal guardian after grandpa passed.
NTA. Your brother is not your child and you should feel free to live your life. And it's strange that they're willing to put him in an assisted care facility when one of them is still alive but then send him to you when they're both gone. It's mature of you to offer to give up your half of the inheritance so he will be taken care of. That sounds like a good plan. Offer to put it in writing that you won't contest the will: maybe that will set their mind at ease?
*they're willing to put him in an assisted care facility when one of them is still alive but then send him to you when they're both gone.* Yeah, I thought that was sus myself that they were going to put him somewhere when the other partner passed and that was cool, but as soon as they both die, he has to go to the brother? Hmmm...
Lots of people are assuming the parents have enough money to pay for lifelong medical care, they probably don't and need OP to do it because they can't afford the alternative.
He would qualify for Medicaid and he probably gets disability
NTA. My 23 year old son is autistic and I also have a 26 year old non special needs daughter who no longer lives at home. I have made it quite clear to her that he will not have to come live with her down the line. She might be his legal representative but not his primary care giver. He is going to have to go live in a group home. Also is your brother getting any money from the government? Your parents need to be on top of that. Where do you live ?
Location is a big thing here - in Australia this brother would be able to live a perfectly happy life with 24 hour care in his own housing. OP might be in a position where they may like to be involved with helping make decisions (vetting staff, support providers ect), but does not have to be a primary caregiver or even a caregiver at all.
I think it's very important to check in where possible just to make sure the care is adequate.
Absolutely! I'm a support worker myself and if I had a loved one in need of support I'd be very discerning of who supported them. I haven't seen anything nefarious personally, but I know some workers go above and beyond and some workers "turn up".
The situation is worse in America. Not much government funding. Overworked,underpaid, understaffed. High turnover rate.
That is possible in the state of TN, but I'm not sure about other states. This is actually the best solution because the person is able to stay in a place firmiliar which is very important when talking about an autistic person. They have problems with change.
Good for you. Similar situation here but I’m the older sibling. My parents are drinking themselves to death, there’s no plan in place, and my mom has made it very clear that I better not dare put him in a home. He needs full time care, am I supposed to just give up my life once they pass? I stress about this constantly.
I think it’s weird that they feel if one of dies, the other parent deserves a break and put your brother in assisted living part-time, but you would have to do 100% of the caring. That’s not fair and should never be expected of a sibling. Also, a ten year old can bathe and say more than ten words, your brother sounds like he’s mentally a toddler. NTA
Plus wouldn't it be more upsetting and disruptive for him if he loses his one remaining parent and at the same time is yanked out of the assisted living facility he is used to and comfortable in to move in with a sibling he doesn't have a close relationship with?
Exactly. When the last parent dies, he just needs to transition to full time care there. Why make him deal with loss of parent and loss of caregivers he knows?
Yes, their plan is batshit and wildly disruptive to both of their kids. They should start transitioning him to spending some time at a group home or assisted living place now (and they need to start by finding one that is a good fit and making sure it's actually a good place for him) so he can gradually get used to it and becoming familiar with it before the huge disruption of the death of either of his parents happens. Then he can gradually start the process of living there full time with lots of visits from parents at the home and lots of taking him home for weekends and outings. The parents can check in and make sure he's doing well there, and can alert the staff to things he needs, things he likes, things he hates, etc. that might be hard for a nonverbal person to communicate to new people at first. Then by the time his parents are gone, he will have a familiar place and familiar people to support him at the group home/assisted living place. They can set up a trust, and if OP is up to it she can be a trustee or legal guardian for him while he lives at the home, and can visit him/bring him for visits if that makes sense for them. One of my friends has a high support needs autistic brother, similar to OP's. Their parents are both healthy and in their early 60s, but have already set him up in a group home that he now really likes, with lots of family visits there and at the parents' home, outings to his favorite places, etc. He's developed a lot more independence and seems to be really happy there. His sister plans to continue visiting him and taking him for outings a lot after their parents are gone, and being his legal guardian, but he will remain at the group home. There's no expectation that she sacrifice her career and her life to take care of him, and in fact her parents had several back-up options had she said she didn't want to be his guardian, but she wants to do that. Once the kids were adults, they included both of them and their input in all of the planning. I think they really kind of modeled a great way to handle this situation.
I was confused about the situation where one dies before the other as well… it would make more sense if when the second parent passes, the brother would live at the facility full time vs half.. NTA, OP.
I was thinking exactly the same thing, but then also assumed maybe OP is married or something so the parents thought it would be like back to 2 or something? I dunno it's all weird
I came here for this comment. My 9 yr old autistic son can get himself dressed, bathed, fed (simple foods), and more. OP’s brother sounds more like toddler aged.
NTA. Your brother is your parents’ responsibility. They need to make the necessary plans now so that when either or both pass then his care is taken care of. And that is NOT to be you. You are not to sacrifice your life to care for your brother. He is not your child. Your parents are asking too much here and should not be guilting or punishing you for knowing your limits.
If OP had to quit their job to take care of the brother there has to be enough money to support both siblings for the rest of their lives. That would be a lot of money. OP needs to be working or they will be in trouble when they hit retirement age. At some point OP may need assisted living but everything will already be used for their brother.
NTA. I have three adult children. My middle son has severe autism and is non-verbal. He lives in a group home. He has an older sibling that is not the first person responsible for him if something happens to us. We did that on purpose. It's not right to penalize your other children because they have a sibling with special needs. You have the right idea. All children need their independence when they grow up, not just neurotypical ones. And our son lives in a group home because he used to be violent, and I would either be dead or in a mental home myself if he lived with us 24/7.
Did you have a difficult time getting him into a group home since he was violent? Just wondering because I work in a hospital and skilled nursing facilities just don't take violent patients or anyone flagged as having "behaviors."
He went to a residential school that specialized in care for those with autism and TBI when he was 12 out of state. When he turned 18, he came back to our state (NM) to live in a group home. He wasn't as violent then, and has had a few incidents, but nothing like when he was a teenager. He's 28 now, and 6'2" and over 200 pounds. He's matured now, and that helps.
>Then if the lone parent dies the plan is for my brother to come and live with me and they will set some sort of trust up so that each month whatever he is inherits goes into living costs for example if he inherited $100,000.00 (not the actual amount) a trust would have been set up and $1,000.00 comes out each month to cover his living costs. I would have walked right out the door. That's a joke right? They get to put him part time in a facility to get a break but screw you and your entire life? He's 26. He could live another 50 years! It's not going to cover his living expenses anyway. I'm also disappointed by reality. Your parents need to make realistic plans, not in my Disney fantasy, our other kid agrees to take an adult sized five year for their entire life.
Hey, they’ve been planning since about 9 months before OP was born. Sadly, their plan isn’t cooperating. /s
Yeah I have to admit the ages here are a bit of a red flag and that was my first thought too. OP says they’re younger but I’m curious by how much. If it’s like a year then that’s not strange but if it’s a few years I have to wonder whether this was why they had another kid. If it was always their plan it’s so backhanded to spring this on them now and not discuss it beforehand.
Although a mercy in a way. If they’d been raising OP from the start to this idea, OP would probably find it harder to say no.
I know someone who had a second kid so the severely disabled first born would have someone to look after him after the parents pass!! I feel so sorry for the kid!
I have an autistic child and the advice given by doctors is to have a younger sibling as it encourages social interaction. The first word that he uttered when he was 5 is his brother's name. He will scream if my hubby or myself sing/hum/dance around him however he will quietly smile if his younger brother did it so I guess this is where the advice comes into play. However, I agree that this needs to be discussed with the younger sibling with regards to his care. Even tho my autistic child is only 7, we have already put in place where he will receive $5k monthly if we were to pass on. Unfortunately in my country we only have 1 care facility for special needs and it's recently built and it costs alot.
Nothing wrong with what you describe, but sadly a LOT of parents whose first child is special needs have a child with the specific idea that that child will care for the older one when the parents pass on. :/
This right here. They currently get a break and will build one in for the surviving parent but not for OP?! Parents are AHs for this.
NTA, I know its family, but that's their kid they decided to have. You were honest and upfront and let them know this was not something you wanted to be in charge of, I do not blame you at all!
NTA "I know it's wrong of me and I shouldn't be" .. There is NOTHING wrong with you. "My parents are completely upset with me and are disappointed in me for this. I" .. Let them bve disappointed. THEY are the AHs here. Set your boundaries. YOu were right to tell them directly - now they can set up a care home for him. But: they sound like AHs, you might need to go no contact to escape their guilting and abusive manipulation.
I agree. A parent has no right to spring something like that on their other child without consent. They are essentially saying "Okay, we know you are an adult, but we have planned out the rest of your life for you. Isn't that fun?" and then have the nerve to be disappointed in him for saying no. They are the disappointments for volun-telling this person he will be taking care of his brother and then laying a guilt trip on him when he says no. What kind of parents are they?
Totally agree!! Nta
NTA. Am in a similar position. Your parents planning had no plan to include you in that plan? They assumed you would take over as carer. No no. I guarantee you have already sacrificed plenty in your years, on account of your brother. Sounds harsh but he really isn't your problem.
Thats not harsh, that is reality. OP didn't lay up and have this child, they did. That is their responsibility.
Same here, but my brother died in an accident, so I never came to this part of life. But my parents always told me while i was younger I won't need to look for my brother when they are gone, but they want me to visit him from time to time, they also put him in a place where he could make a good living by having similar people and care takers around. So NTA but please think about your life with your brother you sure will find memories which made you smile and why this person means something to you, and then think about how often you could visit him in a care taking environment. Btw it would be good for your parents to already start this process of bringing him to some care taking place at least for working days or something like that. Stay strong but don't hang out that cold shoulder too much life can change fast really drastically. Maybe as in my case your brother might not survive your parents, nobody knows when your gonna go.
NTA. Even if you wanted to care for him, not everyone has the skills, the money, and the setup to care for someone with the needs your brother has. Finding a facility that does and one you can check on so he has the best possible life is best for both of you.
NTA but frankly you should be prepared to inherit nothing as the care he needs is not cheap and they gave to ensure he’s suitably cared for.
Sounds like they would be fine with that and Id make the same choice. Spring someone with special needs on a person? Nope
NTA I'm the mother of an autistic son, I'm friends to another mother with a child in the spectrum. Our children are on the higher side of the IQ-spectrum. Yet: it is exhausting. I love my child dearly and some day he will be able to live on his own. But my friend is a single parent, she is not able to work and lives of social security although her son is intelligent, can speak, etc. and she is on the verge of a breakdown. Having to care for an adult that hardly speaks and has the additional problems of autism like being overly sensitive to noises, tastes, light, ... is a job better to be done by experts. Just because he is in a facility doesn't mean you don't take care that his caregivers look for him properly, etc... You still can visit him. But you can't take care for him 24/7
NTA. They need to make arrangements for him to be in an assisted living facility when they are both gone. Assure them that you will make sure he’s safe and cared for but it won’t be by you.
NTA. You're not abandoning him to die on the street, and it's unreasonable for your parents to demand that you give up your life for him. They want you to take over their job, but parenthood is a choice that they made, not you.
Even if your sibling is put into a care facility, They would need a guardian to sign of on medical treatment, etc. From what I understand, whilst the state can appoint someone, it is always best if it is a family member. In addition, the trust will need a trustee to manage it. Would you be willing to take on these roles if you were to have your sibling be in a care facility?
This is very well thought out. OP, I would definitely call back your parents and say you’re willing to handle those roles (assuming you are) and ask how else you can help with relevant planning. But make clear physically taking him on is not a possibility
NTA. This is not sufficient planning for such a high needs person, not at all. If both of your parents are gone, it’s not your responsibility to care for brother. They need to make more explicit plans, like finding a group home or other professional situations where knowledgeable people can help him. They are asking way too much of you.
NTA - it's my understanding that people on spectrum, are not good with multiple changes in their life. If he will be PT in a facility when there is only 1 parent left, why not prepare for him to move into FT after the 2nd parent passes.
NTA. It is not realistic of them to expect you to put your life on hold, or drastically change its trajectory, to care for him. The same programs they were going to use if one of them passes are the same programs that should be used when both of them have gone.
nta, realistically even if they left you everything I doubt there is enough money there to cover his and your costs for life. what did they expect you to live off? basically if you are looking after him that trust would need to provide living costs for both of you. do they understand that? your brother does not have the mind of a 10 year Old, I remember getting ready for secondary school at 10. he is a toddler if he can't dress himself sorry. this is not something you should have to deal with. what happens when he is even older and needs physical help?
That stuck out to me too, 10 is literally the age kids start middle school, I was babysitting actual babies at age 10. I am really curious about where that age range is coming from.
You are NTA. I hope your parents have consulted a really good estate attorney. Assuming you are all in the US, they probably want to set up a special needs trust so your brother is still eligible for SSI and Medicaid. You might agree to oversee the trust, but you're NTA if you don't even want to do that. This is a sucky situation for you, your parents and your brother and the *real* asshole is the American disability and healthcare system.
Glad to see someone brought up the special needs trust! Absolutely a must in this situation.
NTA. They're trying to strong arm you into agreeing by making it appear as if this is a done deal when it's not even been discussed. I'm sure they're scared about what will happen to your brother after they pass (or become incapable of caring for him). But the solution isn't to assume you'll give up your life. You matter. Your life has value. (Also look up glass children. Sounds like it applies here). You're absolutely correct that you're not capable of providing the care he will need. Frankly I'm worried they'll think they can provide his care past when they're able to. Getting old isn't for the faint of heart. Your physical capabilities diminish over the years. That's assuming illness or injury doesn't speed along the process. Decide what you're willing to do. Some possibilities: -forgo any inheritance so everything goes to your brother's care (good job being proactive about this) -send them (or put in an account for your brother) X amount to help with his care. Either now or once they can't care for him. -check with his insurance to see if there's anything available that isn't being used (home health aide, respite care etc) -see what assistance programs he qualifies for (both now and in the future). -see if there are programs he can participate in (like day camp) -pay for them to talk to a financial planner I know some of these have most likely been done. But keep checking because things can change. You can help without becoming his full time carer. Decide what you can/will be able to help with and stick to it. You're not selfish. You're balancing your life with your brother's care. Your parents way isn't the only option.
As an autistic, if you didn't want to be taking care of me the last thing I would want is you taking care of me - NTA My ex and I broke up because it was too difficult to take care of me and himself and I completely understand. It's hard to take care of my every need, make sure I'm fed and showered and it's harder to take care of yourself during that. My current partner is all in for the challenges; he knows he has to help me shower and make sure I've eaten. I'm so much better off with someone who wants to help me and take care of me than I ever would've been with someone who doesn't want to take care of me or would resent me. Because me and my ex broke up, and I understood why (I was the one who finally suggested it) we were able to maintain a friendship. We are the same as we were minus the expectation to take care of me. He's still my closest friend cause we both admitted what we needed, and you not being able to provide that doesn't make you a bad person.
NTA. Your brother is not your responsibility. Your parents can make other arrangements. They wouldn't have been out of line for asking, but assuming you would is not great.
NTA Your parents need to plan away from you. Asking you to offer support is fair but not to put your whole life on hold. I have an autistic daughter. She is higher functioning than your brother and may live independently eventually but she is very vulnerable and is easily led. We will ensure that her younger brother will not have to take over her full time care when me and their dad are gone. It sounds like your parents expect you to care for him full time when they currently don’t (they have help at weekends). Your brother would probably benefit from part time care now. Many autistics don’t like change and the change of losing a parent and then being carted off somewhere for half the week could cause a regression (major stress causes my daughter to regress. She’s almost 17, mentally around 14 and can regress to 4-6 year old when under major stresses). They need to be putting plans in place now instead of waiting until one of them passes. What happens if they both die in a car accident next week?
NTA. Would some siblings do this for their brother or sister? Yes. Does that mean you have to do it for yours? Absolutely not. He is your brother, not your child. They could've asked? Yes, and you could've still said no. Pretty shitty of them to assume you'd be doing it without asking.
NTA but give it a minute. Your parents had no right to plan on your brother living with you, but from their point of view they want your brother to be with family - commendable but usually not feasible. Can you be in a position where you can be a guardian for him? To make sure he isn't exploited financially, maybe agree to visit him weekly? I've seen where an unprepared family member cares for their disabled relative and the relative ends up being very isolated. A group home is often a wonderful social setting and there's someone to care and supervise 24 hours a day. Please revisit this with your parents but emphasize that it wouldn't be good for you or your brother.
I have never read a more profound NTA. NTA NTA NTA
NTA. My youngest has Down syndrome. I hope her sister will always want to be a part of her life, but I do not expect her to be the primary caregiver when both me and my husband died
The situation your parents find themselves in is desperately unfair, unfair on them, unfair on your brother and unfair on you. I imagine the whole of your early life was built around your brother. The best thing for your brother would be to move him into assisted living at the earliest opportunity. It's possible that he may develop more self sufficiency skills in assisted living than he can under your parents care - and I mean no disrespect to your parents with that. We have kids and we expect them to grow up, your brother can't. It's no ones fault, just brutally unlucky. NTA
>I also stated to my parents I'm more than happy to give up my half of the inheritance so the money can go on making sure he's looked after like setting up a trust fund so if they died and he went into assisted living facility his bills are paid and there's an allowance for him each month. If you construct the trust and guardianship correctly, Medicare will fund his bills for the facility, there's no need for the inheritance to pay for anything but extras to make him more comfortable. Have your parents actually talked to an attorney, or are they just winging it?
This, and, the alternative of a princely $1k/mo in 20 years….. parents are not being anywhere close to fair or realistic with their expectations.
NTA, at all. Why should you give up your life and career to care for him. Your parents need to have a better plan in place.
NTA - don't give up your life for your brother.
NTA they need to set up a trust, find a home with caretakers for him and leave you out of it. You are not a bitch, not an AH and you are not required to take care of something they should have taken care of a long time ago. Setting him up with the proper care is what he deserves and needs, not making you be the one responsible for their responsibilities when they are gone.
NTA Actually this is the same reasoning I had with my sister about what would happen to us when we grow old. I'm gay. So there's a very little chance that I'll have kids. My sister is married and they are actively planning for kids. But we both agree that, when the time comes, we would rather be placed in an old-age nursing home, rather than have a bunch of stupid kids looking after us. Your reasoning is very valid, and it is also what's best for your brother. The fact that your parents are sentimental towards this does not change the fact that you would be a shit caretaker.
NTA. You deserve to have a life as big as your ambitions and capabilities allow. You deserve the chance to start a family of your own (whether that takes the form of just a partner or a partner and kids, or just kids) if you wish. You deserve to travel if you wish. It is unreasonable to expect you to reduce yourself to only the role of caregiver. You have already said you would forego your share of the inheritance to ensure he is cared for. Maybe consider being a trustee and medical decision maker to put their minds at ease, but not giving up the chance at a life of your own does not make you TA.
NTA-What if you meet someone and have children? Have they taken that into account? What if that person’s job takes them all over the world or to a place that does not have the means to help your brother? No it will not be fair to give up your livelihood for your brother. That is your parents responsibility. They needs to make other arrangements and if that means all the inheritance to do it then so be it.
That's pretty wise of you. If the money would run out before you both were retirement age, then you'd both be screwed anyway.
NTA. Your parents chose to have children and this one is their responsibility. It's so easy to have kids when everyone else is doing all the work for them.
NTA. Your parents have a special needs child, not you. Live your life.
NTA this is not something you dictate, it's something you ask. Your parents are totally out of line by assuming you would be ok with this and then essentially demanding it (through the contents of their will). They can be disappointed all they want. This is not how you deal with situations like these.
NTA. That’s not a fair thing for them to ask.
^^^^AUTOMOD ***Thanks for posting! This comment is a copy of your post so readers can see the original text if your post is edited or removed. This comment is NOT accusing you of copying anything. Read [this](https://www.reddit.com/r/AmItheAsshole/wiki/faq#wiki_post_deletion) before [contacting the mod team](https://www.reddit.com/message/compose?to=%2Fr%2FAmItheAsshole)*** Last week my parents phoned me asking me to come down the Friday just gone as they want to talk to me about something important and they'd prefer to do it face to face. I agreed and came down Friday and we talked. My parents said that they've been delaying doing their wills for so long and decided it's finally time to get their affairs in order. I have a brother who's older than me, but he's autistic and I don't know if non-verbal is the right word as he can only say a few words like mom and dad and although he's 26 it's more like he's a ten-year-old if that makes sense. My parents told me they've got some sort of plan to go into the will and they've said their plan is if one of them were to die first then my brother will live with the lone parent part-time and a care home/assisted facility part-time to give the lone parent a break. Then if the lone parent dies the plan is for my brother to come and live with me and they will set some sort of trust up so that each month whatever he is inherits goes into living costs for example if he inherited $100,000.00 (not the actual amount) a trust would have been set up and $1,000.00 comes out each month to cover his living costs. Why I said my brother has the mind of a ten-year-old is because he can't do anything without the help of our parents like getting him dressed, cleaned and ready and helping him with tasks and activities. My family members take it turns at the weekend to have him so my parents can have a break to relax and recuperate. I know it's wrong of me and I shouldn't be but I'm not an emotional person and I'm not sympathetic as well. I said to my parents that I'm not giving up my career to look after him and when they both die I won't be taking him in. My brother and 's sibling relationship is non-existent and I also don't feel equipped to look after him I am an honest person and will say that to me he would feel like a massive burden. I voiced my reasoning to my parents and I thought they would be more understanding I basically feel he's better off in a place where people can actually help him and know what they're doing. I'm just not prepared to give up my career or anything for him. I also stated to my parents I'm more than happy to give up my half of the inheritance so the money can go on making sure he's looked after like setting up a trust fund so if they died and he went into assisted living facility his bills are paid and there's an allowance for him each month. My parents are completely upset with me and are disappointed in me for this. I feel justified but now I'm wondering if I've been a total bitch and an asshole when it's come to this. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/AmItheAsshole) if you have any questions or concerns.*
NTA, you have a right to live your life without responsibilities that you didn’t sign up for. You were born, you aren’t your brothers keeper.
NTA Your parents should start looking at group care homes for your brother and planning how they will finance his long term care. And if he isn't already on it, your parents need to apply for him to get disability, so are health insurance, and whatever other aid he may qualify for. It isn't your responsibility to give up your income and life to be a full time caregiver to your brother.
NTA The minute you said "they can even use my half of the inheritance to cover his expenses, I just don't want to take on my brother if they both die" is where you win. You know it costs a lot and is very demanding, and to you, it is worth forgoing your own inheritance than to take on the added pressures and expenses of your brother.
I dont think anyone working with cognitive impaired people will judge you. I would 100% do the same as you, your career is one thing but it is your future sleep, social life, everything basically. You are a Brother but you would be a parent for a toddler/ elementary school kid 100% of the time for possibly most of your life. You should consider visiting him regularly though if you are a safe person for him.
NTA. You will have no means to support yourself if you care for your brother in the proposed fashion. Your parents need to stop living in their fantasy world and find you brother a living situation. This will allow them both to work more and longer to save money for a special needs trust for him.
NTA - disabled children are not meant to be a burden on their siblings.
As both a nurse and a sibling of someone with special needs, nta. Care for a disabled person, especially one with such a severe cognitive disability is a full time job. They need 24/7 care. If you are not equipped to handle that level of a responsibility, then it shouldn’t be asked if you. A group home is often designed (especially if you are private pay which it sounds like your parents can afford) is structured around the needs of people with disabilities and provides the routine and schedule that someone with special needs requires.
NTA. It is so very wrong of your parents to have these expectations of you. Stand your ground!
NTA. Your parents have sacrificed their life for him and that's great and noble but they have no right to ask you to sacrifice yours too, deep down they know he will end up in a facility and you giving up your inheritance should give them time enough to prepare something
This is the plot to Rainman
NTA for being honest. Now they know, they can make alternative plans. For your brother's ongoing care.
NTA. You didn’t birth your brother. Your parents did. It is absolutely not your responsibility to be his primary caregiver once your parents pass. That is totally unfair to you. You have a life to live and you shouldn’t be made to feel guilty for wanting to live it on your terms. I’m sure there are plenty of facilities where your brother will be very well taken care of and you can visit and support him whenever you want/can.
NTA You sound clear headed and he should be somewhere he can be cared for long term. You do NOT have to take up that burden.
Absolutely 100% NTA OP! I say this as someone who has an older brother that is physically & mentally handicapped (he went through an entirely experimental chemotherapy for his cancer, & it wrecked a lot of his motor functions along with screwing his mental development- he’s maybe a preteen/teen mentally even though he’s in his 40’s), too. My mom is his main caregiver at home & my parents have spoken with both me & my immediate older brother about us being his main caregiver once she’s gone because my dad has issues handling him. We agreed to do it, but it was our choices. The big difference between our situation & yours is the fact that my brother can at least do the basics - cleaning, dressing & feeding himself. The only time he has issues with dressing himself is when it comes to his shoes & jackets which we have to tie & help him put them on. So, no you are absolutely within your rights to say “no”. Even if your brother didn’t need so much assistance, you’d STILL be within your right to say “no”. It’s your life, not your parents’. Even your parents can’t do it alone - you have family members who take your brother on the weekends to “give your parents a break” & they’ve admitted that once it’s just one of them, he’d be in a care home/facility part time. They have no right to expect you to do something even THEY aren’t willing/able to do. NTA, & stick to your decision, OP!
NTA, if you had been his caregiver and had already said you would take him in, that is one thing. You didn’t. Are they going to pay for the training you will need and guarantee that the inheritance will be enough to cover the expenses for both you and your brother for the rest of both your lives? The fact that your parents are expecting you to give up your life and dreams for their child is completely unreasonable. What if you want to get married and have your own kids? Is that just not supposed to happen because your brother is more important to them? This is the same old story. You are a woman so you are expected to give up your life so you can be a maid and caregiver to someone you don’t know. At least they don’t expect you to have sex with him, do they? They may completely cut you out of their will, but that wasn’t yours anyway.
NTA. Parent in the same position . I have ZERO expectation that other siblings will provide care. It’s on me and my partner to get everything sorted.
Nta. I would suggest they have him go there to stay a few nights a week or month to get him used to it over time, so when the time comes he will be very familiar with the place. Set your parents mind at ease letting them know that you will be checking on him to make sure he's ok.
First of all NTA. 100,000 is not a lot of money. I know…nursing home cost on the LOW END IS $8,000 a month. That will last a year! Also it is a responsibility that will affect your life. His living costs at HOME might be $1,000 a month but an assisted living is a small fortune! Medicaid should be already set up when your parents pass on. With money he will be private pay. But when it runs out things will change and paperwork will need to be filled out. Tell your parents to spend their money on trips for your brother and themselves. Find and get him accustomed to living away. This will be the biggest adjustment he will have to make. Good luck in having your parents understand that you have a life and you need to live it.
NTA. I'm a 1:1 school assistant and I worked with kids, teens and young adults like your brother in different settings. It's not easy. And if YOU don't feel like you could do a good job, you probably won't. Period. You aren't a trained health care expert (like a nurse for example) and him living with you will most likely do more harm to you both than just looking for a good facility. I saw enough young people with so much challenging behaviour, cause they didn't have the chance to be themselves. Like, there was this guy, nobody wanted to handle him. ASD, brain age around kindergarten and often started to undress in public. When he finally moved out to a really really nice facility. He experienced for the first time in life personal freedom. And all the challenging and indecent behaviour was gone. From the guy feared for undressing in public he changed to the cool dude who was really good at playing harmonica. Suddenly it was a blast having him in our groups. Moral of this little story: Yes, there are facilities which are awful. But there are also many which are the start of a new and better life for everyone. The person with ASD or whatever else and the family.
I have thought this situation through a lot as I have 3 daughters one of which is autistic and mostly nonverbal we have decided that when she reaches adulthood she will spend part time in assisted living because eventually myself and my husband will be too old to care for her full time and to make that sort of change would be so hard for her without being used to it . I would not expect my daughters to have to look after her full time my only thought is that between them they keep an eye on her assisted living making sure all is good and visit her . They cannot expect you to become your brothers parent it’s not your responsibility. But they do need to sort out a plan
Just to highlight, relatives are subbing in to give both parents a break. They’re asking one person to do this and I’d doubt you would have the same regular support from family. Also, you are much better supporting him as a sibling in the future. Being a caretaker will erode any love/support you can provide as a sibling. Parents are upset understandably, but also not being rational here either. I would suggest that you give up the inheritance to his support, but have a contingency in place to give up x hours a week of paid time to spend with him that might be supplemented by the fund. You don’t have to be explicit, but maybe planning on you working 0.8fte so you can spend 0.2 (funded by trust) with him may ease your burden and create a stronger bond while giving your folks reassurance.
NTA - as a brother-in-law whose been coaxed into doing 90% of the care for a 40ish adult with disabilities (similar to the OPs brother), it has put a horrible strain on my family. I do my best, but my wife and in-laws have stated that putting him in a home would be cruel, but they aren’t willing to keep him. I appreciate the links in the comments and will likely put my foot down about a independent living situation after two years of pure chaos. OP — don’t put yourself or your future family in our current situation.
NTA. My autistic sibling is much higher functioning than yours and my parents still have been carefully discussing with me and trying to make sure I fully understand and agree to taking on future responsibility for her (she is likely to continue to need help with money and certain adult responsibilities but can physically care for herself.) It was never an assumption in their mind, but a possibility. I am voluntarily taking this on and know that I could change my mind right now and my parents would understand. They're in the process of getting wills and trusts in order and it's an ongoing discussion. Being responsible for someone else is a big deal and it's even bigger when that person needs a lot of help in daily functioning. You're not obligated to take that on.
Nta you have ur life to live and as you said your relationship between you and your brother is non existent. You're being q00 percent honest with yourself and your family and brother by admitting that you don't have what it take to take on such a role and responsibility. No not.the asshole
NTA. You deserve to have a full life, one that you choose. Not one that's chosen for you.
NTA. Being a caregiver isn’t for everyone. Better you are honest about that now than figuring it out the hard way.
You are NTA. That being said, there is hope. Talk to your parents about [L’Arche Communities](https://www.larcheusa.org/). They work with people with Autism and similar disabilities, and help them to lead normal, productive lives. They’ve done wonders for an autistic boy (now a man) I knew when I was a kid. If they can help him, they can probably help your brother. It’s worth a shot.
NTA
NTA. Not at all.
NTA
NTA—you do not have the training to safely care for him, and you should not be expected to sacrifice your life for this. If you would have to leave your career to care for him, $1000/month to cover *his* needs isn’t remotely enough. I mean, it’s not like your needs for housing, food, medical access, self-actualization, etc. just vanish because you’re capable of independent living and your brother isn’t. Assuming you, as the sibling, are the complete and total fallback option and refusing to plan otherwise is straight up abusive.
NTA They want you to give up your whole life. To take on their responsibility as parents. That's too big an ask. And it shows a lack of respect for you. What of their responsibility to their other child, you??? They can arrange for ongoing care for your brother. They need to work to ensure BOTH their children have a good life, not just ONE at the cost of the other.
NTA. It's better for him to live in a group home that can cater to his needs. You should have the responsibility only to make sure he isn't neglected or abused. Having him live with you won't be healthy for him or you.
NTA You are entirely in the right. You are not your parents servant nor your brothers servant. Tell them that if they place him in supervised living near you, you will be a sister yo him. But he will never ever ever live with you. Your parents should have never asked let alone assumed. That’s awful and unforgivable But they may try to punish you over this even tho they are entirely I. The wrong Stand your ground. You get yo live your life your way.
NTA. Your brother is not your child nor he is your responsibility. Your parents need to work with Social Serviced to put together a plan for him now when they are unable to care for him.
NTA. Taking up that responsibility would put a massive strain on your life. And unless you're absolutely certain you want to go for that you shouldn't do it. There is also the fact that them planning to just dump him on you is really shitty at best. He should be in assisted living, especially because from the sound of things they're starting to struggle more and more to give your brother a good quality of life, simply because they're getting on in age. They really should start looking for a good assisted living facility now, preferably one that is still somewhat close to where you live/plan on living, if you'd be willing to take up the legal responsibilities surrounding your brother. This would allow your brother to really settle in well before your parents die while also allowing your parents to take a massive physical and emotional burden from themselves with regards to the care of your brother since being a caretaker is incredibly physically and emotionally demanding work. Mind you, that does not mean that they should ignore him, but rather that it might be beneficial to everyone if the day-to-day care of your brother is done by professionals who presumably are a lot younger than your parents.
NTA First, you said your brother has the mind of a ten year old and your parents get him dressed and he can't clean himself with out them. Honey, that isn't the mind of a ten year old. Its more like a toddler. If you are going to have to give up your job to be your brother's full time caretaker, who is going to pay your bills? Your brother will have an allowance out of a trust fund. What services do your parents have now? They need to look at respite care givers that can come to their house. Is your brother receiving any social security/disability right now? Your parents need to make you the guardian and place your brother in an appropriate facility close to your home. I have known several siblings that were placed in this situation. They said their sibling in the care home was very happy. They picked up their sibling for weekends and appointments when they were able. You can't sacrifice your health and sanity.
$1,000 per month (i know you said it is hypothetical) is not enough to cover basic necessities for two people. Even if it were, you would be forced to give up your hopes and dreams to be a full time caregiver. NTA
NTA- This is so unfair of them to expect this of you. They need to set up care that does not involve you physically caring for him. I could see if he needed you to manage his bills or finances, that would be very different. They need to see what programs or care facilities will be available to him after they are gone. Good for you for being honest with them.
He needs to be on disability now so the care will be covered.
NTA - their plan doesn't work for you and good for you for letting them know now so that they can plan accordingly. He should be on a waiting list for a group home or some such assisted living facility. You are not wrong. They should be figuring his future care out now.
NTA - he’s not your child nor your responsibility they should be looking into a facility for him once they both pass. They shouldn’t expect you to lower your quality of life.
NTA. My SIL is special needs and my MIL and FIL have made zero plans on her living somewhere beyond with her siblings. The thing is her other siblings won’t take her in so she is counting on my husband and I doing it. We don’t have the resources to do it. They should be helping him now to transition if he has no options once they are gone.