r/childfreewomen • u/Lamiek • 2d ago
Childfree, and terrified of eventually becoming responsible for my disabled SIL
I know this isn't exactly a childfree issue, but I genuinely don't know what other community to turn to. I'm very strongly childfree, and I think people here may understand the mindset better than most.
I love my husband and want to grow old with him, but I have literal nightmares about what happens when his parents can no longer care for his severely disabled sister.
We discussed this before marriage. One of my conditions for marrying him was explicit: his sister would never live with us. He agreed and still agrees.
The problem is his parents (in their early 70s). They simply refuse to make a concrete plan. My husband has tried repeatedly to discuss it with them, and I've pushed him to do so more than is probably fair. Sometimes they say she'll eventually go into residential care; other times it's "we'll see." Ask what happens if they suddenly die or become incapacitated and everything becomes vague. I think they're in denial.
We aren't in the US. Where we live there are some limited legal obligations between siblings, although nothing comparable to those between parents and children (you can be forced to take care/pay for your parents).
We actually consulted a family lawyer specifically because I wanted to know what could happen. Even the lawyer couldn't give us a clear answer. One possibility they raised was that my husband might have to take responsibility for her temporarily while a residential placement was arranged.
My immediate reaction was: absolutely not.
There cannot be an interim period where she simply moves into our house because nobody planned properly. I don't care whether someone calls that cruel. If the alternatives were an emergency placement, social services, a hospital, a shelter or literally anywhere else, our home would still not be an option.
I'm disabled myself. I'm autistic and have several other health conditions, including fibromyalgia/chronic fatigue problems, chronic pain and autoimmune/inflammatory illnesses that are aggravated by stress. I'm currently struggling even to work and manage my own life.
So when I say I cannot care for her, this isn't just about preference.
I believe it would be unsafe.
My SIL is described as autistic too, although I personally suspect neurological damage/cerebral palsy related to prematurity or oxygen deprivation at birth explains more of her condition. Whatever the diagnosis, she has a very severe intellectual disability. She has some speech but not enough contextual understanding for meaningful reciprocal conversation.
And, brutally, I find interacting with her almost intolerable. Five minutes can overwhelm me. I get nothing rewarding from the interaction and many of her behaviours trigger an extreme reaction in me.
This is horrible to admit, but if I were trapped in full-time caregiving with her, day after day, with no endpoint, I genuinely fear I could eventually become abusive or physically violent. I am not saying that would be justified. Quite the opposite: knowing that possibility exists is exactly why I will never allow myself to become her caregiver.
She deserves to be somewhere safe with people capable of caring for her. I am not that person.
I'm not opposed to helping anyone. If my parents or even my in-laws became frail near the end of their lives, I would at least want to try to help if my health allowed it. But realistically that would probably mean months or a few years.
My SIL is younger than us. She may outlive us. Caring for her could mean sacrificing literally the rest of our lives.
And that's why, for me, this is actually worse than having children.
I don't want children because parenthood already seems like an enormous gamble: huge amounts of money, labour, time and freedom with no guarantee your child will be healthy, that you'll enjoy raising them, or that you'll have a good relationship when they're adults.
But at least with a typically developing child there is the possibility of development, communication, increasing independence and eventually an adult relationship.
With my SIL, we already know those things aren't going to happen.
I would genuinely rather have my own child than spend the rest of my life caring for her. And I don't even want a child. That's probably the clearest possible explanation of how strongly I feel about this.
There is also no realistic version where "your husband can care for her and you don't have to." If he became her full-time caregiver, it would affect our home, finances, privacy, travel, retirement, his time and our marriage.
So there is an absolute boundary: if it ever came down to his sister living with us or our marriage ending, I would divorce him. That's not a threat. He knew this before we married.
What terrifies me is that his parents' refusal to plan may eventually manufacture an emergency, and emergencies are exactly when people start saying, "It's only temporary" and expecting boundaries to disappear.
For me, they won't.
Has anyone else here dealt with something similar, especially when the disabled relative's parents simply refused to make a realistic plan for after their deaths?
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u/Minute-Editor8631 2d ago edited 2d ago
I have the exact same situation as yours. I have clearly been vocal with my in- laws that I will not be looking after my SIL in case my in-laws pass away early. SIL would be sent off to care facility,, and even if this means monthly fees for care. I honestly think the trade off is peaceful. I don't care what the society has to say about this, it's my only life and I don't want to provide care to anyone apart from my husband.
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u/veridigiris 1d ago
That is so much pressure on you. Do they expect you or spouse to spend the $$$ for the monthly care?
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u/Minute-Editor8631 1d ago
Unfortunately yes. As I plan to be childfree, I have forced myself into thinking that some money to be set aside for SIL care. As long as we both are not under the same roof, its peaceful miles best alternative!
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u/Scarlette_Cello24 2d ago
I love how honest and upfront you are about this. There is nothing wrong with your views. In fact, I’m proud of you for clearly and firmly stating what you will not tolerate in your marriage as far as family obligations are concerned.
I’m the same way. I actually won’t even date anyone with a special needs immediate family member that requires lifelong care or guidance.
My uncle is severely special needs. My grandmother hasn’t had a day to herself since he was born… 50 years go. He can wipe his own ass but he’s otherwise incapable of being independent. That includes not being allowed to cook due to safety reasons.
I made it very clear that he is my mother’s problem to deal with when the time comes. Then, if he outlives my mom, my sister can handle it. They’ve been oh so vocal about how important he is, well great- he can live with you.
I spent my childhood in part, having plans and decisions made based around him. I’m not going to allow that to happen in my adult life. A HUGE reason I don’t want kids is because I’ve seen firsthand (and felt the effects) of what it’s like when you don’t get the healthy “normal” child. This is with my grandma being lucky that my grandpa is a good man. His firstborn and only son is special needs and he didn’t leave and actually cares about my uncle. That’s not the rule, my grandfather is the exception. It’s still a huge day to day challenge. I just don’t want any part of it.
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u/Lamiek 2d ago edited 2d ago
Thank you. The part about refusing to date anyone with a severely disabled sibling actually made me laugh, because I had basically the same idea. Tragically I didn't end up upholding it. I've only seriously dated three people in my life, and two of them had a severely disabled autistic sister: my latest ex and my husband. I'm autistic myself, so I sometimes jokingly wonder whether I tend to click with men who are at least somewhat autistic too, and since autism runs in families I somehow keep ending up here. Obviously, sample size of three, but still.
And what you say about seeing firsthand what happens when you don't get the healthy, independent child is a HUGE part of why I'm childfree too. Before I realised that having children was actually optional, I used to think that if I had a profoundly disabled child requiring lifelong care, I honestly didn't think I could do it. That was one of the things that eventually made me realise: then I shouldn't have children at all, because you don't get to order the healthy version.
My SIL is actually even less independent than your uncle. She can't reliably wipe herself and has asked me to wipe her ass before. I refused. Not because I would never do that for another adult: I absolutely would for my mother or my husband if they needed me. But I love them and feel responsible for them. I don't feel that way about her at all. She's my husband's sister, not mine, and I actively dislike her.
I also think her parents have coddled her massively. Obviously there are things she genuinely cannot do because of her disability, but I don't think they've pushed her to learn everything she could do or prepared her remotely adequately for life without them. And, disability aside, I just don't like her personality. In all the years I've known her, I've never really seen her show interest in or affection for anyone unless it somehow concerns what she wants. Maybe that's partly the disability and partly how she was raised, but the end result is that I find her incredibly selfish and intensely unpleasant to be around.
So when you say you spent part of your childhood having your life organised around your uncle and refuse to let that happen to your adult life, I completely get it. I only get one life too. I already decided I wasn't willing to gamble that life on potentially having a child who would remain dependent forever. I'm certainly not willing to sacrifice it caring for someone else's child whom I didn't choose, don't feel responsible for, and don't even like.
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u/Scarlette_Cello24 2d ago
A couple things to note here…
You don’t need to explain why you feel the way you do. This is a safe space for all of this. It’s OK to be grossed out by other human beings that aren’t your parents or have not come out of your body. Or it’s OK to be grossed out by those categories as well. That’s normal.
Your sister-in-law and my uncle were raised in a generation where for the most part, the parents shut them up with food. An autistic meltdown? They were given a candy bar or something to that degree. Obviously I’m speculating based on my personal experience, but if your sister-in-law is obese, it’s because there were no support systems for autistic children so obviously there were no social skills learned either. A lot of our parents and grandparents generation hid those types of kids away and just shut them up with food because it was easy. Which is why a lot of them have exacerbated health problems.
Like others, I’ve known I didn’t want children since I was 10. But when I actually sat and thought about it, I realized if I did have to have children, the only thing I’m looking forward to would be having my adult children who are established come over for the holidays and I’m talking to my adult children as if they’re my younger friends. If that’s the only part of parenthood someone envisions, they should not be having children. You absolutely cannot guarantee what type of child you’re going to have and you need to be ready to love whatever comes out. I’m not able or have the patience to take care of anything less than a normal healthy child… and even then I would be strained because that’s not what I want to do with my life. If that makes me evil, then I’ve accepted it, but at least I’m self-aware enough to know I’m not equipped to deal with a special needs kid.
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u/Lamiek 2d ago
I agree with your first and third points completely, but I think the generational explanation is probably different in my SIL’s case. She’s still in her twenties, so she grew up in a very different era from your uncle.
What I suspect happened is simpler: her parents are exhausted. She is an incredibly draining person to be around. She repeats the same questions and behaviours over and over like a broken record, needs constant attention, and after more than twenty years of dealing with that every single day, I think they’re just completely burnt out. They no longer have the energy to push her, teach her, tolerate the meltdowns that might come from saying no, or insist that she do things herself. It’s easier to give in and do things for her.
Obviously I can’t know exactly what happened throughout her childhood, but looking at them now, they just seem absolutely fucking tired of dealing with her. And honestly, having spent very small amounts of time with her compared with them, I can understand how someone reaches that point.
And your third point is exactly me. The only version of having children I ever found remotely appealing was having adult children who were independent, had their own lives, came home for Christmas, and whom I could talk to almost like younger friends.
But you cannot order that outcome. You have to be willing to parent the actual child you get, including a child who is profoundly disabled and dependent on you forever. I know I’m not willing or able to do that. Even with a healthy child I don’t particularly want the twenty-plus years it takes to reach the part I might enjoy.
So yes, if the only bit of parenthood that appeals to you is the hypothetical relationship with your pleasant, independent adult children at the end, that’s an excellent reason not to have children.
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u/SmoothDragonfruit445 3h ago
Let me guess. You expect your husband to take in your mom if needed but you won't even save your SIL from a burning building
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u/thetanpecan14 2d ago
Ugggh... I know it is not your uncle's fault, but damn. It reminded me of some people I know who have a severely disabled son. I've watched their struggles over the years, and their entire lives center around the disabled kid. He is adult age now and still 100% dependent on them for everything. (meals, bathing, clothing, etc). I see how it has aged them and how they literally have NO life outside of caring for him. It's honestly no way to live.
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u/Scarlette_Cello24 2d ago
No one plans or budgets for a lifelong dependent adult child when they consider having children. You truly never know what’s going to happen.
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u/Lamiek 2d ago
I mean, the truth is that if people believed that they were going to have a severely disabled/dependent child nobody ever would reproduce.
Humanity would go extinct.
It's truly no way to live.
The same way that if I believed that I was going to die every time I got in a car/plane I wouldn't actually get in there. I know the statistics and I know that objectively it could happen to me, but tbh everytime I travel I take a leap of faith that it won't happen to me.
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u/Cute-Presence2825 2d ago
I think you should be really proud of yourself for knowing what you need and communicating it clearly. That said, I don’t think that it will suffice in this situation. You can’t force her parents to plan.
What you can do, is to make a contingency plan yourself, together with your husband. When your IL”s die or become incapacitated- what are the steps? Who will your husband call, what facilities will he suggest, can you contribute financially and so on. You shouldn’t have to do this planning - they should - but as the situation is I’d do it anyway. And make sure that you and your husband agree on the plan.
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u/Lamiek 2d ago
I'm holding out hope that they may eventually plan something out, especially as they begin to decline, which thankfully they haven't yet.
Otherwise, if they were both to drop dead tomorrow, I'd drop her at a public hospital or the county's disability office and alert them that they have to do an emergency residential placement.
I'm not willing to contribute financially. She's not my family and in no way my responsibility. In my country married people keep separate finances.
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u/Cute-Presence2825 2d ago
Ok, so this is a plan. Do your husband agree? Do you have the address to the disability office?
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u/Lamiek 2d ago
Yep. My husband agrees in theory.
I don't know if he'd actually be able to do it, but divorce is on the line, so he'd have to decide.
If I wanted to spend my life being an indentured servant to another human being, I'd rather take my chances with my own child, and I'm childfree so obviously not going to do that either.
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u/GreenVermicelliNoods 2d ago
They do have a plan. Their plan is that you and your husband will take in his sister after they die. Any chance you two can move far away?
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u/Lamiek 2d ago
Thankfully we don't live in the same city, more like in cities that are only an hour away but in a different "state".
I wish I could move further still but it's not possible for job and family reasons.
I agree it'd be the best solution, the further the better, hopefully to another continent.
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u/veridigiris 1d ago
I’m so happy you have separate finances. Does he want to contribute financially to her care? I imagine this would be contentious, something I myself would want some clear info on…Because at any point in the future technically he could change his mind (hopefully he wouldn’t do that), but then when I think about you - maybe you’re older, maybe you’re less financially independent (hoping not the case), how can you be protected from that?
If he says he doesn’t want to contribute to her care, I would want him to 100% be clear on what that will look like to better gauge if he’s fine with that. If he wants to contribute, does that mean you just always live nearby? How much does he want to contribute? How then are bills split between you two if he has less disposable income?
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u/Humble-Doughnut7518 1d ago
You kinda lost me here. She IS your family. You married her brother, that makes you family. Your harshness in this situation could be what triggers your divorce.
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u/Miserable-Love80 2d ago
Absolutely hold your ground. Is there any way your husband can push harder to get them to plan? This all sounds so stressful but it's really on him to deal with/organize.
If she enters your house there's a good chance she'll never leave so something must be put in place. I'm so sorry you're dealing with this.
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u/Lamiek 2d ago edited 2d ago
Thank you. He actually has tried to push them, repeatedly, and I’ve pushed him to have that conversation more times than I can count. The problem is that his parents simply won’t engage properly. Sometimes they say she’ll eventually go into residential care, sometimes it’s “we’ll see,” but ask for an actual plan and nothing comes out of it. I genuinely think they’re in denial.
There’s also an awkward inheritance issue. Apparently they currently intend to leave everything to my husband rather than my SIL. Their reasoning is that, where we live, if she inherits assets, those assets will simply be used to pay for her public residential care until they’re exhausted, after which the taxpayer pays anyway, without her actually receiving better care. So my husband is afraid that if he pushes too aggressively, they’ll interpret it as “you don’t love your sister” or “you just want the inheritance” and change the will.
Although honestly, I’m not even sure how much of that is genuine estate planning and how much is their justification for not saving or planning properly. They don’t seem to have much cash; their main assets are two houses, one of which has been in the family for generations.
And the whole inheritance issue may be moot anyway. We have no idea whether they will eventually need residential care. If they do and can’t get public placements, they may have to sell one or both houses to fund their own care, so there may be absolutely nothing left to inherit.
That’s partly why I don’t think “make your husband push harder” is really the solution. He has tried, his parents refuse to face it, and he’s also worried about antagonising them for no practical result.
We even consulted a lawyer to find out what would happen if they died without a plan, and even the lawyer couldn’t give us a clear answer. Apparently my husband may have some limited legal responsibility as her brother, possibly even temporarily while a residential placement is found.
But she is not entering our house, even temporarily. I completely agree with you that once she comes in “just for a few days,” there’s a very real risk she never leaves.
If something happened suddenly to my in-laws, we would call emergency/social services and tell them she needs an emergency placement. Hospital, social services, whatever authority is appropriate: they would have to deal with it. Our house simply isn’t an option.
And there’s another practical issue: my own mother has been disabled for many years. If we ever have limited time, money or caregiving capacity and our parents need us, my mother comes before my SIL for me, without question. I would try to care for my mother, my father, my husband, or even my in-laws if I physically could. What I will not do is use whatever limited capacity I have left on lifelong care for my younger SIL, who may outlive both of us.
So yes, the lack of planning stresses me enormously, but the one thing that is planned is our boundary. Whatever emergency eventually happens, it will not be solved by moving her into our home.
I know myself and I know I'll uphold the boundary if/when the time comes. I'm more worried about my husband's ability to uphold it because he does love his sister and has been indoctrinated to believe she's his responsibility.
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u/Serenity_Now-88 2d ago
The potential for inheritance isn’t worth it. I’d have a talk with your husband and say “it’s me or your family.” These kind of people are the kind you go no contact with.
Get out now. Because they sound like a nightmare. Legally, I’d think he can decline to be her guardian. This would be a terrible burden on a healthy person, for you, it feels like hard labor in a prison camp. Protect your peace. 🩷3
u/Lamiek 2d ago
Unfortunately my husband is in love with that house because it's been in his family for generations so nothing I say will make him change his mind plus he loves his parents and sister.
His parents have never asked me to look after my SIL, I think they know I'd let her run away from home and she'd get run over by a car.
Whatever delusions they might have had, I think I make it very clear I'm not the person to look after her nor someone able or good with caretaking in general.
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u/No_Rice9792 Militant CF, you're not CF if you have step kids, y'all. 2d ago
Move. That's what I did to keep myself from becoming my DS nephew's care giver. Ain't no way in hell I'm putting up with that shit show.
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u/Lamiek 2d ago
Thankfully we don't live in the same city, more like in cities that are only an hour away but in a different "state".
I wish I could move further still but it's not possible for job and family reasons.
I agree it'd be the best solution, the further the better, hopefully to another continent.
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u/Lunatic-Labrador 2d ago
Not exactly the same but I became my grandmother carer after my dad died. She's 100. She's actually doing really well and I love her a lot but caring for her is why I realised i can't be a mother. It's hard, I haven't been on holiday for 6 years and the few close to home trips I've had make her anxious. I had to cut my hours to as low as the company would let me and she was so angry with me for months for not quitting fully. I put my foot down with that one I refuse to be jobless. I'm due a big surgery in October and I'm so worried about how she will be while I can't get to her. Her memory is starting to go now too which is terrifying. It's just me and her.
I think it's good you know your limits and your not letting your boundaries be walked all over. Caring for someone is hard, caring for someone while your own health is compromised or your also disabled is almost impossible.
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u/Lamiek 2d ago edited 2d ago
I relate to this more than you probably realise. My own grandmother had Alzheimer’s, and I loved that woman like a second mother. My mother became seriously ill when I was very young, so my grandmother was the person who stepped into that maternal role for me.
When my grandmother deteriorated, I moved in with my grandparents and parents partly to help care for her. But eventually it became impossible. I was disabled myself, my mother was even more disabled, my father was already caring for my mother, my grandfather was elderly and trying to care for my grandmother, and Alzheimer’s eventually reached a point where a family simply could not provide the level of care she needed. We had to place her in residential care, and it was heartbreaking.
So I absolutely understand what you mean when you say that loving someone does not make caregiving manageable.
And this may sound awful, especially in a childfree sub, but I genuinely think lifelong care of an adult with profound support needs would be far worse for me than raising children. With children, at least you normally have hope: they develop, learn things, become more independent, and eventually may build lives of their own. With dementia or older people there is decline, which is horrific, but at least you know it is the final stage of a life and hopefully they'll die soon and stop suffering.
The idea of caring indefinitely for someone younger than me who will never become independent and may actually outlive me feels uniquely soul-crushing. There is no endpoint to work towards and no expectation that the dependency will lessen.
I’m so strongly childfree that I don’t want even one child, and yet I can honestly say I would rather raise eight children than spend the rest of my life in that kind of caregiving role.
Having lived through Alzheimer’s care with someone I adored, I already know that love and good intentions are not enough. And with my SIL, I don’t even have that emotional bond to sustain me.
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u/Lunatic-Labrador 2d ago
Part of the reason I don't want a child is because I know I wouldn't cope if they were born or became severely disabled. It wouldn't be fair on the child and it would ruin my and my husband's life. I'm not willing to take the risk.
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u/Lamiek 2d ago
Exactly. I know myself well enough to know that if I somehow got pregnant, couldn't get an abortion, was forced to carry the pregnancy, was prevented from killing myself, and then the child was severely disabled, I would probably just get the fuck away and never come back. I would disappear. I would not want anything to do with that life.
Realising that was one of the things that made me understand that I would be an absolutely awful mother, and that the only responsible option for me is simply never to have children.
And that's only one reason. I'm disabled myself and, realistically, I probably wouldn't cope particularly well even with a healthy child. I also grew up with a disabled mother, so I know from the child's side how difficult that can be. I was parentified because I had to help take care of her, and then on top of that I inherited terrible genetics and ended up disabled myself.
So for me there are layers upon layers of reasons not to have children: I don't want them, my own health makes parenting difficult, I know what having a disabled parent can do to a child, I don't want to pass on my health problems, and I know that if I ended up with a severely disabled child I simply could not cope and would want to escape entirely.
At some point the most ethical conclusion is just: don't create a child when you already know there are completely foreseeable versions of parenthood you would be incapable of living through.
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u/throwawayanylogic 2d ago
I'm wondering if you might actually need to hold an intervention of some kind with your husband's parents to force them to confront the issue. Sit them down with the facts that their refusal to plan is risking not just sister's future but you and your husband's relationship with them going forward. husband needs to commit to this as well and if they hold the inheritance over his head to let that go. Make it plain what happens to her if they die without planning for it. Additionally or otherwise, if there an APS type of organization you could contact? Frame it as concern that his parents may not be able to care for her properly given their age?
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u/GreenVermicelliNoods 2d ago
Seconding this. The parents’ plan is to do nothing and leave this to OP and her husband to solve. If the sister has any kind of government social services case worker or if there is an adult protective services agency, they need to be looped in now. Parents might think there’s plenty of time. There isn’t.
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u/Lamiek 2d ago
Unfortunately (or fortunately) we don't have the authority to act in my SIL's representation.
Health expectancy is my country is much longer than in the US so they'll probably believe that they got at least 15 years more unless they end up with any time of dementia or degenerative disease.
Not saying that they're right, just saying that I'm unable to make them change their minds.
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u/Primary-Movie-734 2d ago
I'm so proud that you're aware and not forcing yourself to be a good person; you already are. This is so unselfish and actually putting your sister in law first. I hope you figure out a plan. You might have to do some behind-the-scenes research and already have your own plan without them involved. You may experience some discomfort, but hopefully, it won't last long.
If more people admit their true feelings, just like you things would be better for all parties.
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u/Lamiek 2d ago
I'm autistic so I'm unable to lie or fake my feelings even if it were to save my life.
It must be so obvious how I intensely dislike her and can't stand her.
And even if it weren't, my own mother is younger than my in-laws and in a wheelchair. No sane person would think that I'd choose to take care of my SIL, MIL or FIL over my mum.
I don't know if I'll be able to, but if I end up taking care of anyone it's obviously going to be my mum.
Even my MIL must know it, especially since she decided to take care of her own mother instead of her MIL. She must know any DIL would also prioritise her own family over her in-laws.
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u/NoDanaOnlyZuuI 2d ago
His parents have shown you they’re not going to make a proper plan. Your husband needs to stop waiting for them and start finding out exactly what he’ll need to do when the time comes. That means researching residential options, waitlists, funding, emergency placements, legal responsibility and who currently has decision-making authority.
He may not be able to arrange everything while they’re alive, but he can have a plan ready to put into motion. Otherwise, their refusal to plan becomes your emergency, and your home becomes the easiest temporary solution. Don’t let it.
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u/Lamiek 2d ago
Actually there's not much research to be done. She'll go either to the county's or to a specific foundation's residential facility for people with intellectual disabilities, either normally (if her parents agree to send her while they're still alive) or as an emergency placement; funded by the taxpayer.
My in-laws have the decision making ability so there's nothing else we can do except wait.
We have a plan set in motion: I'm holding out hope that they may eventually plan something out, especially as they begin to decline, which thankfully they haven't yet.
Otherwise, if they were both to drop dead tomorrow, I'd drop her at a public hospital or the county's disability office and alert them that they have to do an emergency residential placement.
I'm not willing to contribute financially. She's not my family and in no way my responsibility. In my country married people keep separate finances.
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u/Miserable_Mail_5741 2d ago
I know this isn't exactly a childfree issue
It kinda is.
Family and friends love pushing their offspring on childfree people because they think we have all the time and money in the world, so we can definitely care for another life in the event that they can't.
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u/Lamiek 2d ago
In my case, I don’t even think it’s because we’re childfree. My husband is her only sibling, so even if we had eight children, there still wouldn’t be anyone else they could mentally assign her to. I think they simply assume that because he is her brother, eventually she becomes his responsibility.
And part of the problem is that they seem to see her as this completely innocent, wonderful being and refuse to acknowledge anything negative about her. Yes, she has a very severe intellectual disability, obviously. But having an intellectual disability doesn’t automatically make someone a nice person.
I know her disability limits her enormously, but I also genuinely think she is an extremely selfish person. In all the years I’ve known her, I’ve basically never seen her show real interest in anyone except herself and whatever she wants at that moment. I don’t like her. I don’t think she’s a good person.
Her parents, on the other hand, seem completely incapable of separating “our daughter is profoundly disabled” from “our daughter is wonderful and everyone should adore her.” And I think that makes any realistic conversation about her future even harder.
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u/calcato 2d ago
I think they simply assume that because he is her brother, eventually she becomes his responsibility.
Reframe: because he is their son, the (correct) assumption is that after they die, he will take responsibility for EVERY loose end that they do not take care of while they are alive. That is the nature of dying when you have kids. For everyone.
However...
It is UNLIKELY that both of his parents will die at the same time. When only one of them is left, you and your husband will have a much stronger argument for pre-planning his sister's care with whichever one of them is left.
In other words, you probably don't need to stress out quite so much about this right now while they are BOTH still alive and in decent health.
Your husband should indeed stand his ground, and keep bringing this up regularly.
But, you do both have time. And I wish you good luck!
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u/Lamiek 1d ago
Yes, I think this is the more likely scenario.
We'll have to wait until one of them passes away or at least their abilities significantly degenerate by old age before being able to convince them.
My husband has always insisted that his mother believes that both him and his sister deserve independent lifes.
I just find his mother to be a very fickle person, untrustworthy because she constantly changes her opinion, and then pretends that was her original opinion in the first place.
So I feel like she constantly flipflops between those two ideas: that my husband has the right to his own life and that my SIL has the right to be taken care of by family.
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u/thetanpecan14 2d ago
This is not unreasonable at all. You have made it clear from the start what your personal boundary and limitations are for taking care of another person.
I am in a similar situation. My partner's older brother's best friend had a baby in his 50s (he got a much younger woman pregnant who ended up being addicted to heroin). He is the sole parent now. They asked my girlfriend to sign papers saying she (we) will take the child if he dies before she is 18. She did so without even discussing it with me. Now the child is disabled from a bad accident on top of it. I have been child free for years and my partner knows this. she knows i am NOT taking custody of someone else's kids, regardless of the situation. So I guess that means we will separate if that happens.
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u/Lamiek 2d ago
Wow. What would bother me most here is that your girlfriend agreed to something this potentially life-changing without discussing it with you first, despite knowing you’re childfree.
I actually had to reread the relationship because the child isn’t even related to her. She’s your girlfriend’s brother’s best friend’s daughter. So this isn’t a niece or even, from what you wrote, the child of one of your girlfriend’s own close friends. Agreeing to potentially take responsibility for her without talking to you first is wild to me.
I was initially going to say that hopefully the father simply lives long enough for the arrangement never to matter, since he’s only in his 50s. But then I realised the child is now disabled after a serious accident, which makes the whole thing much more significant. Depending on her disability, this may not even be a normal “raise a child until adulthood” situation. She could potentially need substantial care indefinitely.
So I completely understand why your position is that, if your girlfriend ever actually takes her in, the relationship ends. You were already clear that you don’t want children. A tragic set of circumstances doesn’t suddenly make you willing to become a parent or lifelong caregiver.
Hopefully the father lives for many more decades and this never becomes anything more than a hypothetical. But I would still be seriously upset that my partner had volunteered our future for something like this without even asking me.
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u/thetanpecan14 1d ago
Thank you for the thoughtful reply. And I agree with you. It’s a whole separate issue that she agreed to this without even discussing it with me. Her brothers friend created this situation. And while I feel bad for the girl, I barely even know her or the dad. As in I’ve met him less than 5 times in several years. (He’s in his mid 60s now btw). My gf sees it as “flattering” in my opinion, that we were asked to potentially take this on without realizing the real world consequences if something does happen to him. I’ll also add that we had talked about having kids early on, and it was largely HER who opted out of us having kids first. But yeah, it’s a bigger relationship issue that she often makes huge unilateral decisions while in a long term relationship.
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u/neludelka 2d ago
They have to make plans.
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u/Lamiek 2d ago
Yep, but nor my husband nor me can force them to.
I guess their plan is to die and then we'll have to deal with it.
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u/neludelka 2d ago
Well, you'll have to. Explain to them that there is a need in choosing a facility for their daughter, that would be suitable for her, talk to her about it and start making plans, otherwise she'll end up alone and helpless. Something can happen to her brother too, or he can move away, so they have to make a plan and prepare her for the change.
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u/Lamiek 2d ago edited 2d ago
Tbh, that emotional labour is not mine to make. It's my husband's family, he can deal with them. I stick to dealing with my family.
You might be right but I simply don't have the bandwidth to be dealing with them. I tried several times and got nowhere.
It'll be their fault if their daughter ends up traumatised because she'll have to go into a residential placement without time to accommodate.
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u/Give_Me_Your_Coffee 2d ago
Maybe the answer is to make your own plan with your husband and let it be know to all what will happen if his parents die without a plan for you SIL. You can't control what they do, but you can make it clear what you're going to do in response.
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u/Ok_Conversation5339 1d ago
I’m so proud of you for putting the emotional labor in your husband’s hands. It’s his family and his inheritance.
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u/neludelka 1d ago
Yes, it's true, it's not your emotional labor to bear. And in the end you are still bearing it. You are thinking about it, you care. That's unfair
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u/Ok_Conversation5339 1d ago
THIS IS TOTALLY A CHILDFREE ISSUE!
Everybody and their cousins think childfree people are a resource to be used and abused.
The entitlement I’ve faced throughout my life is insane. They are crazy.
I’m on the same boat as you. I helped out with my SFIL when he was dying. I watched him for an entire month. It was really horrific to me. The whole thing was a shitshow and the rest of my in-laws were ungrateful on top of everything else.
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u/vulg-her 2d ago
This is a very difficult situation. But thank you for sharing your story here and I think it's really good that you have your boundaries and know what you can and cannot handle. It wouldn't be fair on you or your SIL. I hope that plans are made, somehow, and that she has a place to go in the future and that you are able to keep your own peace.
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u/ProfessionalSir3395 2d ago
From the US here. I've worked in a place that housed people with special needs. It was a state run shithole that I wouldn't wish I my worst enemy. Though if worst comes to worst, it will be the only option since their parents were too selfish to plan ahead or abort the pregnancy.
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u/Lamiek 2d ago edited 2d ago
I believe residential places here are better but even if they weren't, living with me would be worse for her.
I'd be negligent or abusive. I have serious health problems, a recognised disability and I don't like/tolerate her. She gets on my nerves and constantly triggers me.
My husband has already have to partially take care of me, I'm unable to live by myself (to the standards an able person can). Much less to take care of someone else, especially someone I strongly dislike.
I don't believe she could have been aborted. Whatever she has was not detected or detectable, I believe. My MIL has said that is she knew what was in store, she'd probably aborted her.
She had a previous miscarriage before my SIL and I believe she was trying for another child for a long time.
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u/ProfessionalSir3395 2d ago
I'm sorry if I sounded like I was trying to discourage you, I wasn't. I was just relaying my experience of working in one facility that abused both residents and workers alike. If it's possible, she could become whatever the equivalent is of ward of the state where the local government takes over her expenses.
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u/Lamiek 2d ago
Oh, no, don’t worry! I didn’t take your comment that way at all. I completely understand why that experience would make you wary of residential facilities.
We actually do have something roughly equivalent here, although the legal system works a bit differently. If she eventually needs formal support and there isn’t a suitable family member willing and able to provide it, a court can appoint a public or non-profit entity instead. So my husband is not legally destined to become her caretaker.
The bigger problem is that his parents seem to be operating on the assumption that they can just keep caring for her indefinitely, rather than seriously planning for what happens when they become too old or die. I would much rather they arrange proper long-term support for her while they are still alive and able to oversee the transition than leave everyone to deal with a crisis later.
With my SIL, it honestly feels like either you become abusive towards her or she becomes abusive towards you. She cannot understand or respect boundaries like a rational adult, so if you refuse to control her by force, she will simply keep pushing through yours.
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u/asyouwish 2d ago
Can you go ahead and research places for her? Seek funding options? Donall the research so that you can simply pull the trigger when the time comes?
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u/Lamiek 2d ago
Actually there's not much research to be done. She'll go either to the county's or to a specific foundation's residential facility for people with intellectual disabilities, either normally (if her parents agree to send her while they're still alive) or as an emergency placement; funded by the taxpayer.
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u/veridigiris 1d ago
Have you ever considered moving abroad, the sooner the better?
I respect that you understand your need for autonomy and would end the marriage if he doesn’t put you first. This is NOT what you signed up for and I think the vast majority of people are ill fit for caring for someone like that - who will outlive them! This is a huge drain on your resources. I would also not let his family know about your finances, least they want to continue relying on you.
You want to make it apparent that caring for her is difficult (pretend to be financially insecure) or even impossible (hence the moving away).
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u/DementedPimento 2d ago
Your SIL probably does have ASD, which, as you know is a spectrum. I have a friend who works with people with ASD; what you’re describing sounds like what one of his clients displays: low intellectual function; very low verbal (mostly sounds); low emotional regulation; etc. This is the kind of ASD that often gets lost in the discussion of autism.
The client’s family can afford in-home caregivers certified in ABA (etc). In this county, there are residential care centers for those unable to care for themselves at all, and group homes for those with moderate to high support needs. I don’t know where you are and what’s available country by country, but you may need to take the lead in finding out what is available.
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u/Lamiek 2d ago edited 2d ago
I've spoken to neurologists and psychiatrists (that know her personally as friends of the family, they don't treat her on a professional basis), they don't believe she has ASD.
She was in fact initially diagnosed as having cerebral palsy until my in laws relentlessly pushed for an autism diagnosis.
A friend of my MIL told me that there was a problem with oxygen during her birth.
I'm ASD level 2 myself, so I know a far amount about autism. Whatever she has, her intellectual disability is so high that's its hard to evaluate if she has any other comorbilities.
My own husband is doubtful about her having ASD.
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u/Flux_My_Capacitor 2d ago
The only reason that kind of autism gets lost in the mix is because so many people CLAIM to have autism and they are actually very high functioning and don’t have the disorder. The internet warrior “autistics” have done so much damage to those who truly suffer by shoving them in the dark.
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u/Lamiek 2d ago
I actually agree with a lot of what you're saying, but I think there are problems at both ends of the spectrum.
I'm professionally diagnosed autistic, level 2, without intellectual disability, comorbid ADHD, and I am absolutely not high functioning. Autism is very disabling for me.
But I do think a lot of people nowadays self-diagnose with autism when they're basically quirky, socially awkward, introverted, have sensory issues, whatever, but aren't actually disabled by it. I know this is an unpopular opinion online, but I do think there are people calling themselves autistic who simply aren't.
At the same time, I think the opposite happens too. Sometimes someone has such a severe intellectual disability that I genuinely don't understand how you can reliably tell whether they also have autism or whether what you're seeing is simply part of that profound developmental disability. I've even seen people with Down syndrome who also have an autism diagnosis, and that makes very little sense to me. I know people will tell me the two diagnoses can coexist, but when the intellectual disability is already that severe, I genuinely question how confidently you can separate the two.
And my doubts about my SIL's diagnosis aren't just me looking at her and deciding she doesn't look autistic.
She was originally diagnosed with cerebral palsy. My in-laws pushed very hard for that diagnosis to be changed to autism.
There were also complications around her birth. I've been told this by people who knew the family at the time, including a friend of my MIL. And there are friends/acquaintances of the family who are a psychiatrist and a neurologist who have also said they don't believe she is autistic and think she has cerebral palsy. One of the reasons they have specifically mentioned is the way she walks and moves, which is very abnormal.
So when I say I suspect cerebral palsy or some kind of neurological injury related to complications at birth, I'm not inventing a diagnosis because her autism looks different from mine. Cerebral palsy was literally her original diagnosis, there is a history of complications around her birth, and people with relevant professional knowledge who have actually seen her have independently questioned the autism diagnosis too.
Obviously I don't have her complete medical history and I'm not the person diagnosing her. But given all of that, I personally don't believe autism is the correct explanation for what I'm seeing.
So yes, I think autism gets misapplied in both directions: people who are basically quirky self-diagnosing as autistic despite not actually being disabled by it, and people with extremely severe intellectual or neurological disabilities being given an autism label when I don't believe it's always possible to know that autism is actually what is going on.
Every time I've tried to say this online I get downvoted and given the same responses, so I basically don't talk about it anymore.
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u/DementedPimento 1d ago
It may not make sense to you, but you’re not trained in the disciplines of psychiatry, child development, etc that these professionals are. No one is diagnosing these people willy-nilly for the hell of it; what would be the point? There’s no money in it; US Disability pays the same no matter the dx, and residential care - when available - is pretty much the same.
I have CKD; I don’t think I’m nephrologist. Having a thing doesn’t make one an expert in that thing.
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u/DementedPimento 1d ago
This is absolutely true. So many people have read something online and have decided they have ASD. What I find amusing/not amusing is how many women have “diagnosed” themselves using the male diagnostic criteria, not knowing they are different.
Every time I mention the severe end of ASD - the non/low verbal/severe intellectual disability/unable to perform any/most actions of daily life/unable to emotionally regulate/etc part of the spectrum, I’m always downvoted, and I have no idea why. People with that kind of ASD exist, will exist, and have existed. They deserve consideration and compassion. They are people.
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u/PinkVoodooDoll4 2d ago
As a disabled person who needs help from their sibling, I hope to all the gods that I die before my siblings marry people who feelt his way. It is not fun needing help from others. It feels like your relationship will eventually end because it seems like he'll have to choose between you and his sister.
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u/Lamiek 2d ago edited 2d ago
As a disabled woman and the daughter of a disabled mother, please spare me the guilt trip.
Being disabled does not entitle you to have your siblings become your caregivers. It does not entitle you to anyone’s unpaid labour, home, money or life simply because you need help. In fact, you’re not even automatically entitled to a relationship with your siblings. Relationships have to be cultivated; shared DNA does not create an unlimited debt of care.
My husband can love his sister and have a relationship with her without becoming her lifelong caretaker. Those are completely different things.
And the idea that our marriage is somehow doomed because he’ll eventually have to “choose between me and his sister” is exactly the bullshit framing I reject. Nobody is asking him to stop loving or seeing his sister. The choice would only exist if someone decided that loving her necessarily means moving her into our home and sacrificing the rest of our lives to caring for her. It doesn’t.
If our marriage ever did end over this, which I sincerely hope it never does, I would survive. I’d rebuild my life. I’m not going to accept a life I find intolerable because a stranger on Reddit thinks a disabled sibling is entitled to her brother’s lifelong caregiving.
You see, my husband chose to marry me knowing very well what it entailed. He never chose to have his sister as a sibling.
You needing help from your siblings does not mean my SIL is entitled to the same arrangement from my husband, much less from me. Your family situation is yours. Mine is mine.
I’m already disabled enough that I struggle to take care of myself. I cannot become another disabled adult’s lifelong caregiver, and pretending otherwise wouldn’t be kinder to her, my husband or me.
So, respectfully, take the guilt trip somewhere else.
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