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I am a 20 year old University student, and I am guess you can call me a Young Carer because I also care for my mentally disabled 30 year old sister, Dol. I’ve never thought that looking after my sister was a hard task, maybe annoying and frustrating at times, when she wouldn’t do as she was told, but I  never thought of it as a hard life, so I guess I am lucky compared to other people. I grew up looking after my sister, so to me it was just normal. Just as it is normal for you to wake up, shower, eat and go to work, school or whatever, for me it was normal to wake up, wake up my sister up, make sure she gets her food, wearing the appropriate clothing, has had her medicine and ready for 8.15 every morning for when her bus arrives to take her to her day centre. It would be weird for me now, if I didn’t to those things, the mornings for me would be empty. When my sister is not staying with us, I am awake at 8, because it’s normal for me to do so. 

It wasn’t until I had to write this article that I thought ‘hey, looking after my mentally disabled sister is not normal’. Most people my age I know, they don’t wake up till 1 or even later most days, even when they do have lectures at 10am! Most people I know do not wake up at 7.30 every morning to make sure their 30 year old sister is ready to leave the house. However, I still don’t feel resentful, nor have I ever. I sometimes feel scared that I will one day. 

I have felt angry many times, mainly because my sister can get violent at times. She doesn’t understand why she is hitting me; she does so whilst at the same time she is claiming that I am the best sister! I am ashamed to say, that when I was younger, as a child I used to hit back because I never used to understand why she would hit me. Though I used to think that’s what sisters do, beat each other up! We used to both get into trouble then. Now she is the one that gets in trouble when she is caught hitting me! Like I said, I never felt resentful, even when I didn’t understand what was going on.  

I suppose I should say what exactly is wrong with my sister. My sister Dol was 7 when my whole family moved to London from Bangladesh. Everyone fell ill, because they were not all used to the cold weather. Dol eventually fell into coma, and when she woke up, according to the medics, her brain was damaged as it had just stopped growing. To this day, the doctors do not understand why or how it happened. They gave it some long medical term, but that doesn’t really explain what is wrong with my sister, nor am I able to spell it! At the age of 30, half of my sister’s brain is as small as it was 23 years ago, not allowing her to grow or develop and this included the part of her brain that controls her behaviour. One minute she would be violent and angry, the next she would be making jokes and tickling me! 

So ok, half her brain had stopped growing, but the other half has grown, and the weird thing is that my sister even in that weird medical state she is in, she is so unbelievably cleaver! She sits in the living room and listens to everything that happens in our house… she knows all the secrets of our house, and it is always funny when she repeats them, because we all underestimate her. As I have grown older I have learned not to have conversations where she is around, not many people have.

Also, for some unknown reason, she loves to use the phone, especially to call the emergency services, there was a time when she called the police, because we wouldn’t give her any food. Do not take it the wrong way; we were not punishing her in an abusive sadistic way. Just that we wanted to finish out Iftar, not to mention she had eaten an hour ago. One thing my sister loves is food. All the food cupboards are locked to prevent her form stealing food, when we are not around! 

On top of her abnormal brain activity, my sister also suffers form epilepsy. Medication controls her seizures, however in the past when I was much younger; they used to be really frequent. Sometimes if she was standing she would fall down and really hurt herself. By the age of 9, I knew exactly what I had to do whenever she used to have an epileptic attack. I remember it used to scare me a lot; they haven’t happened in years, it might scare me again, if I was to witness one.

I remember when I was 12 and my sister kept having these seizures over and over again, they were so frequent that one night when we had to call for an ambulance and that night I was so scared I thought she was going to die. It is true when they say that you do not know what you have till you realise it may be taken away, I cried a lot that night. It may not have been an ideal situation, but I did not want my sister to die. She may be disabled but HEY! She is the best. I spend a lot of time with her and I know her the best. She is a lot more better at social situations then I am. She loves the attention she gets, always showing off whilst I am hiding in the Kitchen or in my room.  

You might want to know that my parents are still around. But they are so old, they need looking after themselves. Always having to make sure that my sister is not disturbing Mum. I am the one giving the orders to my sister to go to bed. Making sure has gone to the toilet before she goes to bed, she doesn’t wet the bed or even worse, and watching her as she brushes her teeth. That all takes time, especially considering I have my things to do as well, one of them being sleep, so I am healthy to support my family. My friends always tease me over the fact I do everything in advance and that I am always early, Sometimes there is no point going to sleep, if I am going to have to wake up in another hour. So I usually just leave my house, what else is there to do when everyone is still sleeping.

 I know in the future I will be the sole carer of my sister. My older sisters all have their kids and families and I have just have Dol and she has me. They come and go unable to look after her, but Dol doesn’t listen to them. They turn to me to help to discipline her when they are around, because they are clueless of what to do. They don’t bother spending too much time worrying that she shouldn’t be going up the stairs, she might fall. I am doing it, because I will have to deal with the consequences when she falls, I will have to take her to the hospital I will have to put my life on hold, always me, rarely them.  

Nevertheless I don’t feel resentful, I am willing to look after her, because I know she will be the happiest with me and she knows, none of her DVD’s will get played if I am not around, one of the many things I use as a bribery tactic, when she is not behaving! Seeing her run is one of the funniest things I have ever seen, she is quite allergic to exercise like most people. Hence why its agony when she sits on me for a ‘joke’.  

My whole life has been my sister so far, cleaning, showering, washing, and feeding. Just like my very own baby, except, she’s as tall as me, weighs a ton and already has grey hair.  Of course I think about what life would be like if my sister could function like the rest of us, not much of how it would affect me, but what she would have been doing, how the dynamic of our family would be different, what kind of sister would she be like. But I don’t think about it as much, just sometimes crosses my mind. Mostly I think about the future and how our lives will change with time.

So yeah, my future involves caring for my mentally disabled sister, though I never see her as mentally disabled, that’s just the official name given to her by the doctors. She can communicate, she can read, she can write, and after many visits to her day centre my sister seems quite normal compared to most of the users. She definitely is unique and we all love her. 

Najia Ahmed

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Comments (5)

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Subhan'Allah! Ya Ukhtii Allah has given you the chance to gain many rewards, keep doing what you are doing, and bear patience with every step of the way, because know this, that Allah is with you, and in the end He wants to give you jannah tul firdos.

I am envious of your soul, for it is close to Allah, when Allah loves a slave, He tests them. I pray that Allah gives you the highest place in jannah, and removes from you all the pain and distress in your heart. I ask Allah to give your sister better health, and to make her strong and a firm believer. Aameen.

[1] at 20:27 on 22 Nov 09 report this

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i think that it is the nicest thing to watch over your sister and love to. god will bless you so much cause you put your life on hold to care and luv some 1 else

[2] iluvsiair at 19:57 on 17 Nov 09 report this

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agree with my Islamic brother's and sister's comments above hehe

[3] Husain1234 at 16:06 on 19 Sep 09 report this

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hi, you are an awesome person. A lot of people, a lot, cannot do things that you do. I think, helping another person is the biggest deed of all, and i am sure, and i pray, that you will get the reward (or probably already getting it). Don't make this as a burden on yourself. Think that you have been given this opportunity to help another person desperately in need. I am sure, someone will definitely come to your help and support when you will need the most. good luck

[4] saabi234 at 11:24 on 13 Sep 09 report this

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reading this makes me think you can know someone for your life and not realise what they do everyday...calling the police for no food LMAO

[5] Bushra at 22:56 on 12 Sep 09 report this

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