When your child is dying: looking after yourself

When your child is dying: how it might affect you

If your child has a terminal illness and is dying, it’s a time when you mourn the impending death of your child, as well as your hopes and dreams for their life and future. This experience can affect your mental and physical health, emotions and relationships.

Your emotions might be intense, overwhelming and confusing. For example, you might feel disbelief, sadness, anxiety, anger or numbness. It’s also natural to feel regret or guilt or to wish you’d done things differently. Or you might still be hoping for a cure for your child while knowing that their condition will lead to their death.

Along with the difficult emotions, there’ll be joy and laughter as you share time with your child. You might also feel a sense of purpose, meaning and fulfilment as you care for your child at the end of their life.

You might feel these emotions all at once, or they might come and go.

Your sleep and appetite might change, and you might have difficulty concentrating, feel restless, lack energy or have physical discomfort like nausea, headaches or tremors.

Your relationships might change too. If you have a partner, it’s common to have differing emotions and needs. You might sometimes find it difficult to understand each other’s feelings.

You might feel your world is focused on home and hospital. This might leave you feeling isolated from family and friends who are carrying on with their everyday lives. You might spend less time with some people and become closer to others.

Why looking after yourself is important at the end of your child’s life

There might be a very short time between your child’s diagnosis and the end of their life, or your child might be unwell for months or even years before their death.

Whatever your child’s situation, you’ll be very focused on their needs and the needs of your family. You might feel reluctant to leave your dying child, and it can be difficult to find time for yourself.

But if you can make time to look after your physical and mental health, you’ll be better able to care for your terminally ill child and your family. And caring for your mental health will help you to manage emotional extremes.

Your mental health and wellbeing

Here are things you can do to cope when your child is dying:

Let yourself feel whatever you feel. It’s OK to cry, and it’s also OK to experience moments of happiness.
Try writing down your feelings.
Do things that relax and recharge you, like going for a walk, reading a book, having a relaxing bath or listening to a podcast.
Talk to trusted friends and family about how you’re feeling.
Practise self-compassion. For example, say something kind to yourself like ‘It’s natural to feel that I haven’t done enough, but I’m doing everything I can’.
Try breathing exercises, muscle relaxation exercises or mindfulness exercises.
Find something to occupy your mind or your hands in hospital when your child is resting and needs quiet company. This could be knitting, reading, listening to an audiobook or doing a crossword.
Say no to things that you don’t have the energy for, like social events you don’t feel up to attending.

Your physical health

There’s a strong connection between your physical and mental health. Looking after your physical health can protect your mental health, improve your ability to cope, and give you the energy to look after your child.

Here are ideas:

Try to eat healthy meals. If you aren’t hungry, try several small meals rather than 3 large ones. If you’re finding it hard to prepare meals, you could ask friends or family to cook meals for you.
Try to do gentle exercise when you feel up to it. Walking, climbing stairs in the hospital or stretching are good options.
Get as much rest as you can. If you’re having trouble sleeping, try a bedtime routine, and avoid stimulants like caffeine and soft drinks close to bedtime.
Avoid alcohol, smoking and other drugs. These stimulants can make it harder for you to sleep and eat well.

Your relationship

It’s natural for grief and stress to strain relationships.

This can happen if you and your partner experience or express grief differently and have different ways of coping. Or you might find that you’re feeling very low, more irritable and less patient. You might not feel like talking to each other or old issues between you might come up again.

These ideas can help you support each other:

Make time to spend with your partner. You can do simple things like having coffee together, watching a favourite TV show, or going for a walk.
Talk openly with your partner and listen to each other. Sharing your thoughts and feelings can help you understand each other’s needs.
Respect the times that your partner doesn’t want to talk. At these times, you could do something kind to show you care, like making your partner a cup of tea.
Seek professional support if you’re finding it difficult to look after your relationship. A relationship counsellor can help.

How to make memories before your child’s death

Towards the end of your child’s life, it might help to find opportunities to laugh, play, see friends and make memories with your child, if you can.

Here are ideas:

Spend time at home if your child has been in hospital. You can play, read stories, do puzzles or craft, bake or watch favourite movies.
Spend time with extended family, friends and pets. If your child is well enough, you could meet for a picnic at a park or in your backyard.
Go on an outing or holiday if your child’s health allows.
Take photos and make photo albums.
Write letters to each other or record videos and voice messages.
Make a playlist of songs that you love.
Make handprints and footprints.
Make a memory box with special treasures.

How to prepare for the last days of your child’s life

It’s confronting to think about the last days of your child’s life. But knowing what to expect can prepare you to face each stage. And when you’re prepared, you can focus on being with your child.

Your child’s care team is there to support you, so let them know if you have questions. It’s OK to ask questions about your child’s treatment many times. The care team will be used to this and can give you written information if that helps.

You won’t be able to control all the circumstances of your child’s death, but you can make choices about things like who you want to be present and where you want your child to be – for example, at home or in a children’s hospice or hospital.

A funeral is a chance to honour your child’s life. For some parents, it’s important to think about this before their child’s death and include their child’s wishes if their child can express them. For other parents, it will feel impossible to consider a funeral while their child is still alive. There’s no right or wrong, and you’ll know what’s best for your family.

People who can support you when your child is dying

Support from other people can help you cope and give you time to spend with your child at the end of their life. Here are ideas:

Ask for and accept practical help from friends and family. You could ask one person to organise jobs like grocery shopping, ironing, cleaning, cooking or picking up children from school. And you could ask another person to let people know what’s happening with your child.
Talk to your manager or an HR officer at work about your situation. They can help you organise time off or reduced responsibilities.
Speak to your child’s care team about getting financial help from Services Australia.
Join a local or online support group to meet other parents in a similar situation.
Get support from your religious or cultural community. For example, contact your local Aboriginal and Torres Strait Islander liaison service, who will know how to support you in a culturally sensitive way.

It’s OK not to seek support from people who cause you tension and stress. It’s also OK to say no to their offers of help.

Professional support when your child is dying

It’s a good idea to get professional support when your child is dying.

You could start by talking to your child’s care team or your GP. They can refer you to local bereavement counselling services or support groups. Your GP can also refer you to a mental health professional like a psychologist, grief counsellor or social worker.

You can also contact a support service like Paediatric Palliative Care, Redkite, Canteen and Grief Australia.

If you have other children, you can support your children when their sibling is dying by talking honestly about what’s happening, spending time with them and sticking to familiar routines where you can.