The passing of your child or loved one

There are many resources available to support you and your family through the experience of the passing of your child or loved one, and in the time following. Your palliative care team is likely to be a great source of support, and you may wish to ask them about any additional resources, including payments and services they may be able to connect you with.

Paediatric Palliative Care has prepared a resource called A Family Companion.

‘A Family Companion’ is designed for parents and carers of babies, children and young people with a life-limiting condition or illness. This resource aims to prepare you for the situations and challenges you may face with regards to your child’s illness.

A Family Companion is available either in hard copy or online, in five different languages. It is downloadable as a PDF at the following web address: https://palliativecare.org.au/a-family-companion

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There are many resources available at the Paediatric Palliative Care website, a selection of which is listed below:

The Red Nose Grief and Loss website also has relevant resources available, including:

The Australian Government has payments, support and other services available to help you when someone close to you dies.

Your state or territory government may also provide payments, support and other services. You may wish to speak with your palliative care team about options that may be available to you.

Mother holding child's hands

We will always remember Bodhi’s spirit and strength. His stubbornness to endure the journey on his own terms, with a sparkle in his eye. As a father I wanted to teach him about life, however he taught me far more than I could ever have taught him.

– Aaron, Bodhi’s Dad

The grief response

People grieve and cope in many different ways. The way we grieve can be influenced by our cultural background, by our age, and by many other factors. The way we grieve will also change with the passing of time.

One common factor about the early grief response is that people who are grieving need to talk about how they are feeling and be heard without being told how they should or shouldn’t be grieving. It might be helpful for you to let the people in your support network know that when the time comes for you to grieve, they can be of most help by simply listening to you.

There is no need to try and “let go,” “get over” or “move on” from your loss. Your grieving will happen naturally and in time your feelings will change.

For a very small number of people, the severe stress of the loss can lead to mental health problems such as major depression, post-traumatic stress disorder (also referred to as PTSD), anxiety and/or a sleep disorder. If you are concerned that you are experiencing these things, it can be helpful to speak to your GP, who if necessary, will refer you to a Grief Counsellor, Psychologist or Psychiatrist for treatment. If you do experience any of these mental health issues, there are a range of effective treatment options.

Normal coping in the days, weeks and months after the loss

Three common ways people cope with grief are:

  1. Responding with disbelief and denial. This is often felt as numbness or confusion and can include either crying a lot, or withdrawing and not crying. Talking about what has happened and expressing your wide range of thoughts and feelings can help disbelief and denial pass.
  2. Becoming dependent on other people and being unable to organize things in daily life. It is important to remember not to make major life decisions while feeling like this.
  3. Trying to gather a great deal of knowledge and information. This allows the situations leading to the loss to be analysed in an attempt to have some sense of control over what has happened.

Normal emotional reactions in the days, weeks and months after the loss

Emotional reactions to grief can be many and varied, and include:

  • Anger
  • Resentment
  • Guilt
  • Fear
  • Anxiety, which can be expressed as feelings of hopelessness, hurt and worry
  • Shame
  • Loneliness and/or emptiness
  • Depression

Frequently these feelings intertwine and are overlapping. Feelings of relief are almost always present although these feelings can be difficult to admit because they are mixed with the experience of loss.

As a result of these emotions, some changes in thinking are common. People can be confused, have difficulty concentrating, experience vivid dreams or nightmares and feel that they are no longer interested in activities that used to be enjoyable.

The emotions and thoughts also lead to physical responses in the body, such as muscle tightness, tiredness, sleep problems, lack of appetite or increase in appetite, crying, restlessness, avoiding reminders of the loss and treasuring objects that are associated with the loss.

All of these experiences are normal. Allow yourself time to grieve the loss, be honest with family and friends about how you are feeling, be open to accepting their help and ask for help if you need it.

Recovery

Recovery begins when the grieving person reaches out and makes efforts to rebuild by doing little things, like answering phone calls or text messages, and being willing to interact with other people.

Anniversaries and significant events can re-trigger grief responses and the lead up to these events can often feel worse than the day itself. It can be helpful to plan these days and ways of coping in advance.

Grief is deeply personal and individual needs are unique. Allow yourself to move at your own pace after the loss. Do what feels right for you and take your time. There is a part of you that will always grieve the loss and you won’t ever return to how things were, but over time you will shape a new way of life.

I find that when remembering Sebby, it helps me to dedicate some alone time outside of my normal routine. Long hill walks where I carry his photo and try to recall memories of my son are very therapeutic. I experience every emotion during these walks from sadness to happiness but at the end, I always feel like I’ve emotionally re-set and in a sense, that I’ve spent time with my son.

– Marc, Sebby’s Dad

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Further information can be found at the following websites:

Helen cradling her son Archie

I seek joy in all aspects. My heart is broken. It will always be broken and I will always miss Archie. A piece of our life is gone. I choose joy. I choose to find joy in the fact we got to be parents. We got to experience an amazing love that so many don’t get to share. We got laughs, smiles, memories and the best cuddles! I fight to be the best version for Archie. I live for him. He is not here, and I choose to make sure I keep his memory alive. I am his voice. Photos are cherished. I have my favourites printed and framed all throughout our house. I have a photo of Archie with a big grin on my car dashboard. I carry his sock with me daily. I find myself watching videos and laughing and crying all in one. Crying for what should have been and laughing with the memory. He was the cheekiest Bear ever.

– Helen, Archie’s Mum