My name’s Andrew, I’m in my 30s and I have an older sister with a severe intellectual disability.
I live at home with my mother to help her in the care with my sister. Recently my sister broke her foot and things in the last few weeks have been really bad -- really really stressful. I want to talk about it a bit... but I warn you, if you decide to read what I’m talking about... it might be a little bit difficult for you to understand or just difficult to cope with. I’m feeling very emotional right now so I’m going to talk frankly and emotionally.
My sister has no speech and can only communicate through sign language. As she’s gotten older her mobility has become an issue -- but she’s always been able to walk, and to get where she wants to go under her own steam. Having broken her foot recently she’s confined to a wheel chair and it’s become incredibly frustrating for her. As a result she’s been acting out more and more.
My sister throws trantrums. It’s hard to describe this if you haven’t seen it. But basically, if you’ve ever seen a four year old lose their mind, rolling on the ground kicking and screaming... try imagining that but instead of a child it’s a fully grown woman, kicking and screaming without any restraint. In recent years we’ve made real strides in trying to help her cope with her temper -- giving her the tools to help her calm down. I’ve become very good at being able to talk her down -- to make her think about what she’s doing and to stop her from just going insane.
But... today. Today was a bad day.
My mother is away, so my sister only has one carer this weekend. I don’t begrudge my mum her holiday -- she desperately needs it. I don’t want anyone reading this and thinking she’s in any way a villain in this story or that I’m angry at her or that I resent her. My mum’s my hero.
But... without her here it was only me today, and that meant it was a lot harder to cope.
My sister started losing control in the morning when I was trying to help her get clean. She’d wet the bed in the night -- a common occurance -- I’d used adult nappies (diapers) on her so that she wouldn’t wet her cast in the night, but she’d pissed so much the bed was still soaked. So I got her out of bed and took her to have a shower.
And she lost it. I couldn’t let her tantrum in the wheelchair, she might break it. So I had to pick her up, bodilly and carry her to the bed. I am not the strongest man in the world, but fortunately I have enough physical strength to do this. This isn’t something my mum could do, for example. So we sat on the bed, me holding my sister’s legs, sitting in a puddle of piss until I could finally calm her down.
I pulled the sheets off the bed before the next tantrum, but eventually I was able to get her to have her shower and get clean. I spent some time then alone, on the computer -- leaving her to watch some TV and listen to some music. You can’t really fully relax in these situations, though. You have to keep one ear open for her to be distressed -- or if she needs help. You need to keep interrupting what you’re doing to get up and check that she’s okay.
So I decided to cook some food. I put some toast on to cook and then looked around for eggs -- and my sister decided to throw a tantrum. I had to take her out of the lounge room and into her bedroom, lay her down on the bed and hold her legs to restrain her until she was calm. Usually I would be trying to prevent her from biting her hands -- but with her broken foot my priority was trying to restrain her from kicking.
By the time the tantrum was over my toast was cold. I stared at it for a little while. I thought about reheating it, but then it’d probably just get burned. So I just threw the bread out the window. Sometimes it feels good to do something extreme -- even something little like that -- to get some of the stress out.
I put some more toast on and then put some eggs on to cook. The eggs were going nicely too -- just how I like them -- when the next tantrum started. I don’t know what triggered it. She was bored. She was frustrated... maybe I told her we weren’t going for a walk to the park because I couldn’t trust her behaviour? It’s hard to keep track. Whatever the case I grabbed the eggs off the stove so they wouldn’t burn, then ran and took my sister back to her room to restrain her again.
I don’t think I can describe how frustrating it is to stare at perfectly cooked eggs that have gone cold while you were dealing with bad behaviour. I was so hungry and tired, but there was no bread left... and I didn’t want to think about cooking.
I checked my phone -- something I’d been planning to do more regularly today because I usually go out with my best friend on a Saturday and he was going to look at what I had waiting at the comic shop and contact me to see if I wanted him to pick it up for me. I’d missed multiple calls, so I rang him. He offered to get me lunch, but by that time I was so exhausted that nothing sounded good so I just asked him to bring a loaf of bread.
I don’t think there were any more incidents before he came over. I dunno.
But there were a lot more incidents after he came over. He’s known me for a long time... and he works in disability, so he didn’t freak out or get worried. He just let me deal, and helped where he was needed. But most of all, we were able to chat and talk -- and watch a shitty movie together (we watched Escape to Witch Mountain in fits and starts between tantrums).
He’s my best friend, and we share nearly everything... but there’s still stuff I never talk to him about. I was crying before he came over. I never cry -- certainly he’s never seen me cry. I can’t remember the last time I cried. I’m not some big tough guy who’s all, “I AM A REAL MAN!” I just... I guess I just have to be stronger than that. I don’t know. I’m... I’m not making sense.
I don’t know if he’ll read this -- maybe he will, maybe he won’t. I don’t know if anyone will read this. But if he does, I’ll know he’ll understand, even if I’m not really making sense.
It’s not usually this bad. Usually you cope day to day. Usually you have good days, you have bad days. But you lean on the people around you and you cope. But she broke her foot -- and that adds a whole other level. She hasn’t been healing. She was off her foot for 4 weeks, and she wasn’t healing. She doesn’t understand, you see -- she wants to walk around. And when she’s angry she’ll throw her legs around like a madwoman. The bones aren’t recovering. After this weekend I don’t think it’ll be anything but worse.
The longer she’s in her wheelchair the more frustrated and bored she gets. The more frustrated and bored she gets the more she tantrums. The more she tantrums the longer it takes to heal. We’re stuck in a cycle.
And every time she tantrums I just want... I just want to punch her in the face until she stops. I just want to scream at her -- or slap her, or... or Or I want to cry. Because I’m failing her. God I know it’s not my fault -- it’s just a situation that’s difficult for everyone. But... it’s so hard to cope.
I’ve tried every tactic today. I’ve negotiated, I’ve screamed, I’ve cried -- that shocked her, I’ve never cried in front of my sister before -- I’ve pleaded with her. But mostly I’ve done what’s worked best for the last few years -- I’ve gently, calmly talked to her, trying to just help her to calm down -- telling her what she needs to do, making her think about other things, helping her to breath. But... it’s just not working.
So there’s the medication.
We’ve never medicated my sister to control her behaviour, but things have been getting bad. With her broken foot the stakes are raised -- we can’t AFFORD to let her bring herself under control any more. So we have the medication. I gave it to her today and I felt like a failure when I did. But it didn’t matter anyway. It made her dopey for a while, but the tantrums keep happening, even while she was dopey.
When my friend went home there was some quiet time before bed. My sister watched Care Bears, while I sat at the computer for a while, watching things on Youtube. Then came bedtime -- and another solid hour of tantrums. An hour. I’m sure it was an hour or more because I started putting her to bed at 9-something and it was 10-something by the time she finally went to sleep.
I ended up just singing to her to calm her down. Laying on the bed with her singing “I’ve been workin’ on the railroad”. It’s not easy to calmly sing a lullaby when you’ve spent the day being hit, having your hair pulled, having your glasses yanked off and being kicked.
I feel exhausted. I feel abused. I feel alone. I also feel trapped.
My mum will die one day, and it’s just going to be me and my sister. I think that’s what’s made me cry, if I’m honest. I’ve known this responsibility was going to be mine as we got older. But... this is the first time I’ve realised that I simply may not be able to cope with it.
I’m sorry if you’ve read this, whoever you are. Please forgive me if I’ve said anything offensive. Please forgive me if it got a bit graphic. Forgive me if my writing was shit -- I couldn’t bring myself to do a second draft. But I just had to vent.
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