These are some signs that death has occurred:

• Breathing stops
• Pulse stops
• They do not respond to anything
• Their skin feels cool and looks pale
• Eyes stop moving and may stay open
• Pupils of the eyes stay large, even in bright light
• Control of bowels or bladder is lost as the muscles relax

What do we have to do?

Wherever your parent dies, there is nothing that needs to be done in a hurry. This is a personal time to be with them and say goodbye. Take as long as you need.

Some families have chosen to spend this time doing things like sleeping next to their parent one last time, washing them and brushing their hair, cutting a lock of hair to keep, holding their hand and talking to them. It’s perfectly OK to touch and hold your parent after they have died.

The decision to see your parent after they die is up to you. Remember that even with the best planning things can change when the actual moment arrives, so be gentle with yourself and understand how you are feeling. If things don’t go exactly as you would have liked, there are lots of things you can do to say goodbye in different ways.

If your parent dies at home

Your parent’s palliative care team will tell you what you need to do and who you should call if your parent dies at home. Usually, you will have to call your parent’s doctor and a funeral director and they will lead you through the next steps.

If your parent dies in the night, it’s OK to wait until morning before you call the appropriate people if you want to. The doctor will come and check your parent and sign a death certificate and give this to your family or your funeral director.

If they die in a hospital or hospice

It is fine to sit with your Mum or Dad for a while after they die. There is no rush to call anyone or get anything done right away. Many families find this is an important time to talk together or pray and say goodbye.

The doctor will give your family a death certificate for you to take to the funeral director. You may be able to take your parent home for one last visit. The funeral director might also come to collect your parent’s body from the hospital or hospice.

It can be really hard to leave without your parent. The staff will support you and let your family know what you should do next.

What happens now?  

No matter how long you have known this was going to happen, how much you have thought about it and how ready you think you are, nothing can ever fully prepare you for how you will feel when your parent dies.

Your reality has changed forever and it can be impossibly hard to think about facing your life without them in it. There is no guidebook for how to get through this. There is no ‘right thing to do’ or ‘best advice we can give’. Each person deals with grief in their own personal way.

The first few days

The first few days or weeks after it happens might feel very strange and life at home might seem really flat. It is impossible to predict how you might feel, or what this time will be like.

Here are some things other young people have described:

Numb

Your body might be going through the motions, but you don’t feel sad or anything at all. You might feel disconnected from the world and like nothing feels real. You might think you should be crying but the tears just aren’t there. This is your body’s normal reaction to shock.

Lost

It might feel eerily quiet and calm just after your parent dies, particularly if you have been living with their illness for a while. When you don’t have to care for your parent anymore, what are you supposed to do now? It can take a really long time to get used to the massive changes in your life and for things to settle back into a new kind of “normal”.  

Distracted

It might also be really busy, there might be people everywhere and things to do and you don’t get a lot of time to yourself to take in what has happened.

Denial

You might find it really hard to accept that your Mum or Dad has gone and that your life will not go back to the way it was before. It might feel like they will just walk back in the door any minute.  

You might need to sort through your parents things after they die. This can be very upsetting as it feels so final. It’s fine if you don’t want to do it for a while. Some families like to leave their loved ones things just the way they left them until they feel ready to pack them away.

Remember, everyone in your family will deal with this in different ways. You have to do what is right for you. You may worry that you can’t talk about your parent in case it upsets people. But make sure you do find someone you can talk to. You might have a friend or relative. You could also call a counsellor or support line.

Relief

It’s perfectly natural to be glad that this is all finally over.