To hate my brain damaged sister

[JulieBindelHasAKindle]

My sister is a 9 years younger than me. Up until she was 9 she was normal, no disabilities, smart, sporty and we were very close. She was in an accident (no details as identifying) that left her with severe brain damage. She’s doubly incontinent, nonverbal, quadriplegic. Basically in a minimally conscious state. She’s kept alive with no brain function for my parents sake. Every day my parents spend hours caring for her, talking to her, hoping she’ll recover. I’m never congratulated, I got top grades in my a levels, a first in my degree at a top university, a masters, high paying job. And I’m ignored while an involuntary twitch of her hand is seen as a miracle. It’s been 7 years since her accident and she’s the same as she was 6 years ago. AIBU to wish she didn’t survive?

This sounds like such a hard situation for everyone.
you have all been robbed and lost something. Its very sad. 💐

Another vote for counselling.

worth remembering that since covid lots of therapist do virtual sessions.
I was surprised how "in person" it felt
(i had some following some bereavements while i was pregnant) i think you should def be able to find a good one who you click with especially as privately funding.

Based on my experience, i would say If you arent feeling it after the first session try someone else. I took 3 goes to find one i felt was right for me.

I think you need someone who can help you with processing your own feelings AND with strategies and ways of dealing with your parents. A good therapist might be able to help you find ways to carve some of that space out you need and help you have some more open conversations with your parents.

God forbid the sibling of a disabled child or adult not utterly love and adore them and clamour to be their primary carer once mum and dad are gone.
Having seen DS1 shunned by young carers groups for not adhering to the script, I have some sympathy with OP.
But yes, she needs talking therapy or this will continue to overshadow her life.

But not for OP?

How in the world is that the same thing or equal comparison?

Your comment is utterly ridiculous.

I’ve said YANBU because it’s very clear that you don’t actually hate your sister. You love the person she used to be, and you hate the situation that the four of you are now in, which is totally understandable. I don’t have any advice, but I don’t blame or judge you for the way you’re feeling, it must be incredibly painful

I don't think you hate her. I think you love her and can't bear to see her in that situation. I have met several children in my work, who have had similar brain injuries and in all honesty saving their lives has not been in their best interests. However your parents have been very unfair in not giving you the support you need and deserve.

OP you are NOT heartless. What an awful situation for your family.

I thought immediately of Cathy Rentzenbrink's book The Last Act of Love. It's her memoir of how her teenage years and 20's were spent fighting to keep her brain damaged brother alive and the terrible damage it caused to her life and that of her parents. It's a beautiful book - absolutely heartbreaking - but I recommend it as I think it has parallels to your story.

The Last Act of Love.The Story of My Brother and His Sister

TBH some of the commenters in this thread who've criticised you, need to understand that feelings are complicated and pain is real

Im so sorry for all of you. My heart aches reading this.Its not your sister that you hate its the situation. I'm sure if she has any capacity to think your poor sister probably wishes she didn't survive either. Her Spirit died when she had the accident its only her poor damaged body than has remained. Death isn't always the worse case senario.

it's so hard to see your family destroyed and suffering and for it to go on and on. Unfortunately in many ways the ability of skill of modern medicine has long out stripped caring application.

I understand their perspective and frustrations.
But the title they used, omg that's cold.

I struggled whether to post or not. I am so sorry this is what you're facing and so sorry your parents aren't able to split themselves better, while also having some sympathy for them too. No one trains anyone how to cope with the unthinkable.

Your pregnancy hormones may also be doing all sorts to you, and when your child is with you, it may upset or stabilize that apple cart.

It does sound like you're suffering 'golden child' syndrome, as a result of awful tragedy and your parents over focusing. You're facing a double loss. (IMO so are they) If you can afford counseling, definitely go for it, and use it to also explore how to talk to your parents. The family dynamics sound suffocating.

The situation here is then young teen, suffered sudden severe injury and acquired brain damage. She was pretty much left to die.

It was instinctive to fight to keep her alive and give her the best possible chance, which also meant nursing her 24 hrs. A sibling was drafted in to allow any sleep. None of us thought about consequences, but of course they still happened.
I've always accepted siblings accidental pregnancy through disrupted birth control while taking turns in shifts with me, was one of the many accidental results of our disrupted lives. Another sibling furious she was sexually active!

I've done my best to split my attention and resources as best I can, but the truth is for many years, the lions share did go to their disabled sibling, or fighting legal cases for her, or SS when I finely managed to win some money for her. (Suddenly SS was interested!)
They've had to live with so much and it's all been blisteringly painful for everyone and doesn't end.

'She' has unexpectedly recovered a life against the odds. Some's luck, some a great deal of hard work. But it is such a very different, disabled, limited, slow, heavy, and self absorbed life, that's peaked now. 'She now' is so very different from their light bright funny sibling, with almost no resemblance to who or how she was, requiring 24/7 care, and life requires planning around her.

The simple reality is the vast majority of the original 'her' died that day, and from her siblings pov, all of her. But the painful reminder and slower death of her lifestyle slowing killing her, is reality now. Witnessing her dying slowly from the only lifestyle that brings her happiness, isn't easy for anyone.
But, she may outlive me. I've had it more than once, that everything is my fault.

I and they, find the 'we learn so much from the disabled' nauseating even if it has truths. Now I'm also viably disabled myself that tripe has at least ended.

So we're very different from your family set up, but all but one (has their own issues) have at various times exploded at me over the unfairness of the amount of attention she's taken up. It's been translated as me not caring enough about them, despite (apart from the first month when we all were in auto) having bent over backwards to ensure special moments, achievements, and milestones are noticed, celebrated, and praised, and being an available grandmother helping them home ed. One has also claimed I over favored sibling who got pregnant.
Yet they're all otherwise very un jealous and supportive of each other!

I think it may go with the territory to some extent, as when we've talked about it, it seems to be more about how planning round her needs, and thus she has presence in everything, made them feel somehow less important and like that original awful shocking day just never ended for them, no matter what I did.

Two of her siblings have at various times said or shouted at me, that they wished she'd died that day. Thankfully never around her. Once that they'd be glad when she'd gone. We all ended up crying over the reality. It hurts to hear, but their complicated feelings in a complicated situation are, well... complicated.

The biggest difference here is how we communicate, but even in an openly communicative family, some of the residual feelings suffered, may be simply the the cruel icing on a never-ending cruel cake.

YANBU
This tragedy ripped all of your lives apart. I agree some therapy to help you work through the trauma of your sister’s accident and the impact of the fallout of that- and in particular your parents treatment of you- would be well advised. You need support to come to terms with the past and put boundaries in place to protect yourself from your parents behaviour. I think it may be worth trying to explain to them that you need them/want them too/l- but only once you are in a stronger place mentally so that you can deal with any backlash.

Your parent’s behaviour is very hurtful and unfair- whilst I understand why it has happened, it doesn’t excuse it. I totally understand that your parents are living a nightmare, but that doesn’t mean whatever they do- or perhaps more accurately don’t do- is something you just have to accept. To ignore her, give no support or even acknowledge any achievements, to never make contact…. is fairly inexcusable, IMHO. To do what they did when OP told them she was pregnant is also fairly breathtaking in itself- I think you need to put yourself first for now and put some distance between you until you are feeling in a better place. I’m not saying don’t call or see them, just do so on your terms and as it works for you.

If OP’s parents aren’t careful they’ll lose out on OP and her life, and those of their grandchild(ren). What has happened to them is heartbreaking, I’m not denying that, but they are going the right way to inflicting another heartbreaking situation upon themselves by behaving the way they are. Perhaps having that pointed out to them could change things for the better? If not, at least it’s out in the open.

As for the situation with your sister, I don’t think it’s unreasonable to think her quality of life is such that it would have been better for her that she had not survived the incident. To be kept alive is not always the best thing, to know that your parents chose this (possibly for themselves more than her) when you feel that wasn’t the right thing is hard. When you are then harmed emotionally by the impact of it all, it makes it hard not to be resentful. I’d say few people would cope well with it.

I have a situation within my own family- my cousin had a birth injury which has left them with the developmental age of between 3-4 but with behavioural complications and a number of physical health problems too. They do have a better quality of life than OP’s sister, by the sounds of it, but not what I would describe as a “good” quality of life. My cousin does require a lot of care/input etc and his life expectancy is much shorter than average.

His parents have done wonderfully by him, in many ways, and fought for his needs. However, in their pursuit of that they appeared to forget that their other children had needs too. I mean, they provided physically in terms of a roof over their head, clothes on their backs etc but everything centred or revolved around their sibling. Any difficulties or upsets were dismissed, support was sporadic and so on. I don’t doubt they care, in some ways, but it’s like everything stopped for them and they devoted themselves to their disabled child to the exclusion of nearly all else- including their other children. I understand how that happens but they have hurt their children and effectively sabotaged any meaningful relationship between siblings. My parents provided more emotional and practical support to the other 2 siblings than their parents. All 3 are now adults. My aunt and uncle wonder why they aren’t close and why their children chose to move away. They also can’t understand why they aren’t more involved in the care of their sibling. The truth is that they resent their parents for their lack of support, aren’t particularly interested in trying to repair things (as they doubt their parents would take on board their point of view), and don’t have any intention of providing physical care for their sibling. It’s sad, but totally avoidable. Sounds like OP is in a similar situation. Very sad all round.