To figure out what your brother or sister needs and how you can offer support, it can help to try and get inside their head and understand what living with an incurable illness is like for them. You might find that many of their thoughts and feelings about this situation are very similar to yours.

In your sibling’s shoes

• They may be scared.
• They may be angry.
• They may be very lonely.
• They may be shocked or in disbelief.
• They may be thinking about all the things they’ll never get to do. Or thinking of all the things they need to get done.
• They’ll no doubt wish this wasn’t happening to them.
• They may not like all the focus and attention on them.
• They may worry about your family and how you are coping.
• They may want to reflect on what’s happened to them in the past – the good things and the not so good things. They may want to think about the ‘meaning’ of their life and the ways they have contributed.
• They may want to know what death will be like and worried that there will be pain.
• They may be wondering about their beliefs and spirituality and thinking about things like what (if anything) happens after they die. 
• They may not want to talk or think about any of this stuff at all.

The best way to understand what your sibling is feeling is to spend time together. Even if you don’t say anything at all, your willingness to just be there and share this time will let them know that they are not going through this alone.

Should we talk about dying?

Your sibling may want to talk about what is happening – or they may definitely NOT want to talk about it.

The best plan is to follow their lead. Don’t force them to talk; give them permission to not have to.

Most people feel very scared and uncomfortable talking about death, especially when it is someone they love. Even though it will be hard, it can be important for your sibling to know they can talk about this stuff if they want, even if they don’t take you up on the offer. 

If your brother or sister wants to talk, listen. Try not to correct them and say things like, “Don’t talk like that”. Knowing you will die can be an intensely lonely and frightening experience. Talking about it and knowing someone is there to listen can take away some of the fear. Talking about death with your sibling does not mean that you have given up hope or that you want them to die.

Just be yourself in conversations like this and only do what you feel comfortable with. You don’t have to be cheerful and upbeat. You don’t have to be their counsellor. You don’t have to have the answers to the tough questions. It’s OK to cry and let them know how you are feeling too.

If you don’t get a chance to have an intimate conversation with your sibling, that’s OK. You will have lots of precious memories of them and you can be sure that whether you do or not, they do know how much you care.

How can I help?

Don’t let your fear of doing or saying the wrong thing keep you from being involved in this situation as much as you want to.

There is no rulebook that tells you exactly how many pillows you should plump or dinners you should make to be a helpful sibling. Every experience is different.

Try to let your parents and sibling know if you would like to be more involved in their care. Take some initiative and just do things. You may not be asked. But don’t take on too much. If there are things that you are not comfortable doing, you don’t have to.

Little things, like helping your sibling stay in touch with their friends by updating their Facebook page or sending out group texts can mean a lot to your brother or sister. One of the biggest things you can do is just to hang out with them and keep them company.

Think of things you can still do together even if they become weaker, like watching a movie or playing a board game. You will probably value the time you have with them later, even if you’re just sitting in silence. 

Top tip: Treat your brother or sister as you always have. They are still them.