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Talking about it with your family
It can be really, really hard to talk about dying. You may have lots of questions, or you may not want to talk about it at all. Sometimes your mum or dad might not want to talk to you about what is happening. In some families, parents talk to one another, or other 'older' adults in their lives, about what's going on, but may not talk about 'big issues' with their children. In others, parents are very open communicators and talk about anything and everything with their children.
Whatever your family's style is, if you want to talk to your mum or dad about dying or end of life issues, you may have to let them know that. If you don't want to talk to them about it, but you want them to know how you are feeling, you can write them a card or send them a text or email - sometimes that's easier.
If you and your family can, it can be helpful to talk about things like where your parent would prefer to die, who they would like to be around them when it happens, funeral arrangements, or things that might change after they die. Talking about these things does not mean that you want your parent to die or that you have given up hope. Your parent might actually be relieved that you brought the topic up. They might even feel comforted to know that you know the end is coming.
Sometimes parents try to hide things to help you cope. But tell them if you want to know everything, and ask them to be as truthful as possible. Explain you need to know what's likely to happen so you can be ready to deal with it.
End of life decisions
Every family is different. Yours might avoid talking about your parent's death, or might be very open about it. Whether you are involved in every discussion, or have only a small part, it can be helpful to know some of the 'end of life' decisions your mum or dad may face if their cancer can't be cured.
Your mum or dad has a right to make decisions about their treatment and care right up until the end of their life. It's important to write their wishes down and to tell the medical team about them, to make sure they get followed when the time comes.
These decisions include:
- Making an 'advance care directive' to tell doctors what kind of treatments are or are not wanted, no matter how ill they become — including whether they want to go on life support
- Deciding who will be their 'Medical Power of Attorney' — the person who will make decisions for your parent if they can't speak for themselves
- Where they'd like to die if they have a choice (at home or in hospital are pretty common choices)
- Whether they'd like to donate organs if they can
- Whether they'd like their body to be buried or cremated
- Any ideas they have for their funeral
- Whether they have a Will
- Who will look after you (if you are under 18) and your brothers and sisters after they die
Your mum or dad might need to get legal advice about some of these issues.
Get all the information you need
Getting the right information is so important. It can help you understand what is going to happen to your mum or dad so you can support them and be prepared for it yourself. Ask as many questions as you want and as often as you want, such as:
- Why did this happen?
- How do you know that there are no more treatments to try?
- How long do they have?
- What will happen to them? Will it hurt?
- How will we know when death is close?
- What do we do if mum/dad dies at home?
What you might be feeling
During this time you and your family will face a lot of new challenges, and you may go through lots of different emotions. Some of the feelings you had when you first found out about their cancer may come back, plus there may be some new ones, like:
- Shock/disbelief - when you can't believe that this is really happening
- Denial - pretending everything's normal might be easier than accepting that your parent is not going to be around forever
- Empty/numb - this doesn't mean that you don't care, it might just be your way of protecting yourself
- Guilt - you might feel guilty that you didn't help enough, or about a fight you may have had with mum or dad. It's not your fault that any of this is happening
- Regret - there's no point dwelling on the things you could/should/would have done differently. Be kind to yourself — forget about the past and focus on now
- Fear - no matter how brave or grown up you are, thinking about life without your parent can be scary
- Anger - what is happening is so unfair and you have a right to be mad. Try to find positive ways to release your anger and stress
- Sadness and despair - thinking about your future without your mum or dad can be heartbreakingly sad. If you feel utterly hopeless and lost, you need to talk to someone
- Worry - about what will happen next
Once you've started to process the fact that your mum or dad is going to die, you might start to wonder 'What happens when …', like 'What happens when my mum/dad is not here anymore?'
Grief. Yes, it's possible to feel 'anticipatory grief' before someone dies, and this can be really painful.
If things get to the point of end-of-life care, our page on palliative care explains what to expect. And when you're ready, saying goodbye has practical ideas for making the most of the time you have left.
