Dear Thelma: My future is uncertain due to my sibling


Do you need a listening ear? Thelma is here to help. Email lifestyle@thestar.com.my.

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Those contemplating suicide can reach out to the Mental Health Psychosocial Support Service (03-2935 9935 / 014-322 3392); Talian Kasih (15999 / 019-261 5999 on WhatsApp); Jakim’s family, social and community care centre (011-1959 8214 on WhatsApp); or Befrienders Kuala Lumpur (03-7627 2929 / email sam@befrienders.org.my / befrienders centres in malaysia).

Dear Thelma,

I come from a small family, with only one sibling, who has special needs. He is older than me by four years.

Ever since I was young, my mother has always told me to lock my room door if I wanted some privacy, because my brother would sometimes just barge in.

He is now 28 years old, and is taller and stronger than me. It takes both our parents to restrain him if he wanted to do something that they wouldn't let him do, for instance, go out of the house.

He has run out of the house and got lost before. On one of his escapes, we managed to find him after searching for him for about an hour – he was injured but he couldn't tell us how he got hurt, as he can't talk. Also, he did not seem to feel the pain.

Lately, my parents have been telling me that when they pass away, I will have to take care of my brother. They said I must not send him to any care home.

How am I supposed to look after my brother, if I find myself alone one day?

Because of this, I do not want to get into any relationships with any guys because they wouldn't understand.

There is a guy who likes me, and although I am attracted to him, I'm scared to go beyond friendship because of my brother.

I don't think any future husband would want to take on the extra responsibility of taking care of my brother.

My future looks uncertain.

Depressed


I'm so sorry. What an awfully difficult situation for all of you. Having said that, having a kid because you need a maid is a no-no.

I get that your parents love your brother, but they can't create you and demand that you sacrifice your entire life to their firstborn. It's simply not ethical.

Your right to a life is equal to that of your brother – or anyone's for that matter. So where does that leave you?

From your letter, your brother will need lifelong special care. This is your parents' responsibility. They can't simply dump it on you. Of course, you are his sister and as his family, I suspect that you will want to help.

As you point out, you want to date and marry at some point. But perhaps you would be happy to supervise your brother's care in a big-picture way?

Care plans will depend on your brother's needs and also your family's means. However it works, there will need to be a responsible guardian who can monitor him long-term.

This need not be in your own home.

I understand that people are frightened of care homes. History has shown some to be bleak institutions at best. However, there are centres that are truly caring and run on professional lines for the good of the clients.

Your brother needs a happy place where he's safe. As he's big, strong and has a history of running off, he needs gentle but firm supervision day and night.

That argues for a home that has several shifts of staff as well as good supervision like a person on the door and cameras.

Perhaps also a bracelet tag so that if he manages to wander off, he can be found quickly before he runs into trouble.

Apart from being safe, a good home will provide him with company. We're all social and your brother might enjoy making friends of his own.

Good homes ensure that their clients have plenty of enriching activities. What these are depends on client needs.

For clients who yearn to be as independent as possible, there is sheltered housing that also offers work opportunities. Therefore, some have agreements with companies to make products or to work part-time in safe spaces like family-run hotels and restaurants.

For clients who can't cope with the outside world, there are homes that focus on in-house activities like dancing, crafting and gardening.

My advice is to figure out what he needs for a happy life and also to see how you would work as a guardian for him. Talk to people who have special needs kids, talk to people who run homes, and plan for the best future you can.

You will already have contacts, I'm sure. However, here are two excellent resources: Malaysian Care (tel: 03-9212 0162/malaysiancare.org) and National Association of Special Education, Malaysia (tel: 03-7967 5097/nase.org.my). You can also call the Talian number given above.

Most of all, please don't feel guilty. When faced with difficulties, we do our bit. But total self-sacrifice is strictly the realm of fictional stories.

If you need help talking to your parents, invest in a few hours of therapy with a professional. They will help you model the conversation in a safe space and deal with your emotions.

Reach out for help, make the best plans you can and go and date that nice man you like. Know I'm thinking of you.

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