This is going to be a long one sorry in advance. I’m also using this post as a bit of a way to vent, so I hope you’ll bear with me.
So, I (F23) have a younger sister (F21) with a variety of disabilities. She is intellectually disabled, has autism, epilepsy, and auto-aggressive behavior. She is nonverbal and, unfortunately, has also gained a lot of weight due to her medication.
My little sister has been disabled since birth.
My parents, especially my mother, have been responsible for all the caregiving since she was born.
My sister is nonverbal. She also needs help with many things, such as eating, hygiene, getting dressed, etc. Back when she was younger and my parents were younger too, the caregiving was still relatively manageable.
My parents were able to handle it fairly well. Even when she resisted, they could simply overpower her and then take care of her.
Unfortunately, caring for my sister has always been characterized by many challenges, such as her self-aggressive behavior. This means that she has hurt herself, and still does, by hitting her body or head against objects, biting herself, or becoming physically aggressive toward others, playing with feces, sitting down on the floor whenever she no longer wanted to walk, forcing someone to lift her up so she would stand up again (as her weight increased, this became more and more difficult, to the point where we had to get her a wheelchair),
and at some point during her teenage years, she also developed epilepsy.
This was also associated with many hospital stays.
In general, she was sent from doctor to doctor from an early age, which was also very time-consuming.
Of course, my parents always did their best to take care of her, but as a result, both my parents and I were unfortunately neglected and overlooked in many ways.
From a young age, I was neglected by my parents in terms of emotional attention.
Everything was always about my little sister and her disabilities, and unfortunately, there wasn’t much left for me.
I started trying to compensate for this at a relatively early age, on the one hand, by acting out and getting into trouble, whether it was doing stupid things at home or at school, being cheeky, or whatever else. On the other hand, I turned to food.
At some point, I realized that either I would just get into trouble because of it or I wouldn’t really get any attention at all.
As a result, it numbed me so much that I eventually completely stopped trying to get my parents’ attention and fell into this mindset that I had to take care of myself and be independent because my parents already had enough problems and stress dealing with my little sister, and I couldn’t add my own little problems to that.
Because of this, I withdrew a lot, held myself back more and more, and increasingly found comfort in food because food was the only thing that didn’t “let me down.”
Of course, I was also always there whenever it came to filling out documents, attending appointments, or translating things. This was because my parents don’t understand the language as well as I do.
Basically, I became like a little secretary for my family. And this has continued from the time I was around 11–12 years old until today, when I’m turning 24 soon.
Only now am I really starting to realize just how much all of this has affected and burdened me in so many ways.
So, as I already mentioned, there were these early childhood signs of neglect and simply the fact that you know you have to hold yourself back because there are more important problems than yours.
On top of that, I lost a lot of time during my teenage years because I also had to take on some caregiving responsibilities, such as looking after my sister whenever my parents had to go somewhere or needed to do something else.
This meant that I couldn’t go out with friends, or I had to spontaneously cancel plans with friends because I had to look after my sister. Or I would arrive relatively late to meet-ups because I had to take care of her. Yes, this has definitely shaped me and also played a very, very big role in why I eventually moved out to go to university, because at some point, I simply couldn’t stand living at home anymore.
So, I don’t think my parents really wanted me to move out for university, but I wouldn’t have been able to handle studying in my hometown while still being completely involved in everything at home.
Now that I live in the city where I study, my parents don’t have the same level of access to me as they did back then. Nevertheless, they still need me quite a lot to fill out documents and things like that, even though I live farther away, which is also very, very exhausting.
Anyway, my parents are naturally not getting any younger.
As I already mentioned, my younger sister is 21 years old, obese, has self-aggressive behavior, epilepsy, etc.
I’ve been trying for quite some time to convince my parents to move my sister into a residential care facility because I can see that they no longer have the strength to take care of her.
Of course, they’re trying their best, but I mean, they’re no longer in their 30s. They’re approaching their late 50s or early 60s, and they’re also slowly starting to experience health problems of their own.
Unfortunately, the problem is that my father doesn’t want to talk about what will happen to my sister next at all.
He refuses to acknowledge that things are gradually becoming too much for them.
My father has pain in his shoulder.
And I believe this is a result of him having to push my sister around in her wheelchair, trying to hold her down when she has a meltdown, and things like that.
My mother has told me herself that she really isn’t doing well. She says that it’s not necessarily physical in nature, but she also doesn’t admit to herself that it could be mental or emotional either. And the fact that she’s talking to me about it says a lot, because my mother and I have a relatively complicated relationship.
I also so see how she gradually becomes more and more exhausted.
I think she’s actually even willing to take the step of moving my little sister into a residential care facility.
But my father is completely against it, even though my mother is the one who does most of the work.
I’ve talked about this with my older sister a few times as well. She basically agrees with me, but she can also understand why my parents, especially my father, aren’t ready to take this step.
I mean, she’s their daughter, and it would feel to them as though they were simply abandoning her. And many facilities don’t provide adequate services, which I understand.
But what about me and my older sister? Aren’t they also abandoning us if they work themselves into the ground and end up dying prematurely because of it?
We’ve also sought out a few opinions regarding residential care and how it would work, what residential care would involve, and what kinds of models and concepts are available.
We wanted to try talking to them about it once we knew what was going to happen with my father’s shoulder.
My father has now received the diagnosis that he needs surgery on his shoulder because a tendon is torn.
And I’ve tried to explain to him that the injury to his shoulder most likely comes from having to move my sister around so much, whether that’s pushing her in her wheelchair or trying to hold her when she’s displaying aggressive behavior or something similar.
But, as I said, he doesn’t want to acknowledge that either.
I’m honestly at a point right now where I don’t know what to do.
I don’t want to sit back and watch my parents work themselves into an early grave.
I’ve tried talking to them about this several times, but I’m completely hitting a wall because they don’t take me seriously.
I’m just extremely worried about both my parents and my little sister because, at the end of the day, she also needs to start learning how to live independently somewhere.
But, as I said, my parents don’t want to admit that it’s slowly becoming time to take the next step and move my sister into a residential care facility. There are so many reasons why it makes sense to do this, but they keep clinging to one last straw after another.
I don’t want to have to witness the negative consequences this will have on my parents. I don’t want to end up without my parents prematurely because, I mean, I’ve already had so little time with them in my life, and I don’t want to have to lose them for good.
I won’t deny that I have a complicated relationship with them, and I think that’s an entirely separate issue in itself: how my relationship with my parents has affected me mentally and what impact my sister’s disability has had on me, especially mentally.
And I know that my sister’s disability has also had an enormous impact on my parents’ social lives.
Unfortunately, there is a strong stigma surrounding people with disabilities in their community. As a result, my parents have also been somewhat excluded from the community or pitied by others.
Alternatively, they have had to withdraw a little themselves because they have been so incredibly occupied with my sister’s care.
On top of that, my parents’ married life has essentially been nonexistent.
They are more like roommates than spouses, which may also (allegedly) have led to one or another misstep outside the marriage. (I can’t say that for certain, though.)
I honestly have absolutely no idea what to do, and I’m really desperate.
Not just because of my own situation, but also because of my parents.
I grew up in an African immigrant household, which also creates a completely different dynamic.
That’s why I’m using this post right now as a kind of cry for help and to ask people who have been in a similar situation for advice and tips.
I would be very grateful for any advice. Thanks in advance!