Telling the story of me and my severly handicapped brother

[Knatz]

I'm a male, 21 years old. Living in Sweden where I grew up with my mom and dad, older brother who is mentally and physically handicapped (dyskinetic cerebral palsy + mental disability I do not know the name for), and younger sister. At 13-14 I cut myself, and at 15 I started doing drugs.

 

Things were all right as far as my earliest memories go, maybe that's because there aren't that many of them. The ones of my brother are happy and with parts of our extended family around helping out. My brother can not talk with words, he does not have that kind of control over his muscles. He does communicate though, like an infant. Crying when upset, making sounds to hint at something, blinking for yes and almost pronouncing a "no" when he means "no". As I grew past him I never realized the situation, my parents never talked about it. It was 100% normal until I started being away from my family and hanging out in friends houses without wheelchairs at around age 7-8. That's when I first noticed things were off in our family.

 

I never had trouble with kids teasing me or him for it, but I would be scared having girls over when it came to that. My friends got to know who he was but they never got close. He was mostly in another room if we were playing in our house. They never/very rarely asked about him. If there was an option to play at someone elses house, I would fight for that.

 

When my brother was around 14 years old and I was about 10, he started having problems with his hips and back. There were many surgeries and trips to hospitals in different cities for many years. We never talked about it. We went there, said comforting things to my brother like "it's going to be better soon" "you can go home soon" etc. He understands these things to an extent... After 10 minutes he'll be asking "when can I go home?". Very annoying for parents who does not want to talk about anything. My parents never asked me or my sister about our experiences of any of this.

 

My brother stopped eating around this time. My parents would mix "regular food" into a mush like the ones for babies because chewing was hard, but even this got too hard for my brother to eat. So naturally, my mother got mad. It escalates quickly and soon she is full on yelling at his face, he's crying and there me and my sister are sitting across the table, watching. So is dad. In these intense moments of action he's passive.

My brother has gotten nutrition through gavage ever since (I'm not sure if that's the right word. Food through feeding tube in stomach to bypass the throat).

 

Then he stopped sleeping. So now my mothers screaming would not end after dinner, it would carry on into most of the nights when I was around 13-19 years old, until I moved out. I asked my sister earlier today how the nights are now, she said "he still wakes up, but I guess mom is less mad". She would scream so loud, and so would he. "You have to sleep, don't you understand?! I'm tired of this, it's *enough*!". The worst thing she ever said was "if you don't shut up I'll throw you out of this window". That stuck with me, you could say. Then the next morning, she and dad is acting like nothing has happened, smiling and ready for the day. My brother was happy too, but he can't really help it. I thought I was going insane, I obviously couldn't process reality.

 

There's lots more, but I guess that is enough. I've been to counseling for a few months, once every 2 weeks which is not enough for me I feel. I've told my parents all of this, how I feel they abused all of us. But they do not get it. Just today I told my mother that I do not want to come to the birthday dinner, because I'm afraid I will burst into tears.

She replies with the usual "but I've said I'm sorry already! What do you want me to do? It's in the past... I can't go back in time, and change what is done! I'm sorry!".

 

I've invited them to a meeting with my counsler in 2 weeks, looking forward to that.

 

I work as a personal assistant for my brother, have done for 2 years. He didn't have anyone else at the "daycare" he went to after school. My parents report good times in school, and when he left at age 19 for something called "day center" (roughly translated) he was miserable. He cried every morning, he did not want to go. He would cry until he puked. Right, I forgot to mention he would average vomiting something like 2-3 times a day for the later half of his life. I have a lot of gross memories of him and vomit running down his chest, me and my sister panicking yelling for mom or dad to help... He's 26 now and I believe it's getting better on that aspect. To be honest I think it's my communication with him that has made this improvment (among other things, like going out for wheelchair dances and hanging out at a café for handicapped people). He is always looking forward to going there with me, he has lots of friends who want to be with him, I help him communicate through translating his body language to others, and he has only puked 3-4 times during my 2 years working with him.

 

I have to start the day with going home to him, and he still lives with my parents. Then we take a taxi to the Day Center, when the day is done we take a taxi back and my parents take over the role of "personal assistant". This makes me very sad. I don't want them to take care of him, and I don't want to meet them every day.

 

I don't know why I made this post. I originally called it "feeling guilt over not going to dads birthday dinner" but it turned out a lot bigger than that. Don't think I have a question for anyone to answer, I just wanted to express how I feel and maybe have someone listen.

[AccuTron]

I'm sorry for all of you, this is a very tough situation.  I'm not an expert, just some guy, but it strikes me that your mother's outbursts were a very human reaction to the unbearable.  Can you sit quietly and focus on all the times in between that she had to be functionally heroic to care for your brother?  Either way, suffering alone is worse than suffering with sharing, so it's good you wrote your well crafted message.

[Knatz]

Well, I remember us having a lot of fun together sometimes, I don't know why it's hard to define how frequent it was compared to bad times.

We would go on vacations, playing in the yard, dad tought me to play the piano... 

 

But I feel it doesn't matter to me, when in the next scene my mom is wrecklessly carrying my small brothers 30kg body, bumping into walls when transporting him from bed to bathroom as punishment for not sleeping. Can't decide on what word to describe "bumping into walls", but his arms and legs would be kind of hitting the frames of doors as they went through.

 

I feel weird saying all of this, I'm afraid of looking pathetic in the minds of anyone reading.

I think that's the inner critic? My thinking voice becomes this character, the reader in this case, and he's got a very snarky voice saying something like "this is too dark, such a melodramatic kid thinks he's special".

 

And I believed that, so I came back here to delete this whole thread. But instead I made this post.

[Knatz]

I feel an urge to edit everything, because I don't want any mistakes. The title is wrong, that phrasing is wrong... I'm sick of it.

[shirgall]

I feel an urge to edit everything, because I don't want any mistakes. The title is wrong, that phrasing is wrong... I'm sick of it.

 

I understand the feeling, but I suggest you turn your focus to the accomplishment of getting your message out rather than having it not be sent because of analysis paralysis.

 

I sense a lot of frustration in what you are saying, and perhaps a little remorse about having said it, but I would be proud to write about something so personal and deeply touching. I hope you will get some good results from counseling, and I of course encourage you to call into the show to get some feedback from some truly empathic folks.

 

Hang in there!

[Celgot]

Well, I remember us having a lot of fun together sometimes, I don't know why it's hard to define how frequent it was compared to bad times.

We would go on vacations, playing in the yard, dad tought me to play the piano... 

 

But I feel it doesn't matter to me, when in the next scene my mom is wrecklessly carrying my small brothers 30kg body, bumping into walls when transporting him from bed to bathroom as punishment for not sleeping. Can't decide on what word to describe "bumping into walls", but his arms and legs would be kind of hitting the frames of doors as they went through.

 

I feel weird saying all of this, I'm afraid of looking pathetic in the minds of anyone reading.

I think that's the inner critic? My thinking voice becomes this character, the reader in this case, and he's got a very snarky voice saying something like "this is too dark, such a melodramatic kid thinks he's special".

 

And I believed that, so I came back here to delete this whole thread. But instead I made this post.

 

Yeah that inner critic is a pain in the ass. I can relate to alot of what youre saying, the random yelling/screaming through the night or any time really and how normal everybody acts afterwards, like nothing has happened. Its like living in a mental institution