When we hear the word grief, we often think about losing someone we love. But grieving happens in response to all kinds of changes and losses.
After an acquired brain injury (ABI), children and families can experience many changes and kinds of loss. For the child and their siblings, it might be the loss of an ability or activity, loss of independence, friendships, individual time with their parents, usual routines and family times.
For the parents, it may be loss or changes in work role, loss of time with friends and other family members and usual social activities or loss of a sense of stability or certainty. On a deeper level there are also losses relating to their plans for the future for their child and their family, loss of hopes and dreams or even loss of connection.
These feelings are sometimes described as ‘living loss’ or ‘chronic sorrow – grief connected to a loss or change that is re-experienced over time. Understanding that these feelings can be part of life after a child’s brain injury can make these feelings easier to recognise and talk about.
Everyone’s experience of grief is different
Queensland Children’s Hospital Advanced Social Worker Alana English said it is important to realise that the grief journey is different for everyone.
“You may have heard about the ‘five stages of grief’ and the idea that people move through grief in a predictable order. That’s a myth about grief as it isn’t a series of five predictable stages. Grief is more like a tangled ball,” she said.
Feelings such as sadness, guilt, disbelief, anger, anxiety, numbness, confusion and shock may come and go. Grief comes in waves, sometimes gentle, sometimes overwhelming, often unpredictable. There may be times when these feelings are strong and other times when they are less noticeable.
“People within the same family are also likely to experience grief differently. One person may want to talk about what has changed, while another may focus on practical things or finding ways to move forward. There is no single right way to grieve,” Alana said.
Children and young people with a brain injury can also struggle with the new, different life ahead of them. Activities that were once easy may now be more difficult, and they may have to adjust their goals. They may see friends gaining independence or reaching milestones in ways that aren’t possible for them.
Siblings may experience grief, too in response to the changes in familiar routines and family relationships and they may have their own feelings about what has happened to their brother or sister.
“Grief can present itself in many ways, and may not always look the way we expect. For some children and teenagers, it can look like anger, frustration, withdrawal or being upset about things they can no longer do in the same way.
“Looking beyond this behaviour, asking what might be underneath it and acknowledging all the changes and losses that they are trying to manage, can help you better understand what your child needs,” she said.
New feelings of loss can emerge
A brain injury happens at one point in time, but a child continues to grow and develop. This means new challenges and an awareness of new losses – and new feelings of grief – will often emerge for the child and family members months or even years later.
Starting or returning to school, moving to high school, changes in friendships, life stages such as having a sleepover, getting a driver’s license, or a part-time job, or other ways in which your child would usually become more independent can all highlight differences in their experience.
There can also be unexpected reminders. A new sporting season may be difficult for a child who can no longer play their favourite sport, or watching friends reach a milestone may bring up feelings about something they had expected to do too. Birthdays and anniversaries of the injury can also bring difficult emotions back to the surface.
Brain injury is sometimes described as a ‘hidden disability’, and families may find themselves explaining why their child needs more time, support or a different approach – even months or years after the injury.
“A child may look the same to other people, particularly once physical injuries have healed. But they may still experience changes to their thinking, learning, behaviour, emotions or ability to cope with everyday activities. This can be difficult when other people expect life to return to how it was before,” she said.
Re-experiencing grief doesn’t mean you or your child are not coping or have gone backwards You are simply adjusting to a new stage and what it means for you and your family.
Understand there will be ups and downs
There is no right way to grieve after your child’s brain injury. But understanding what you and your family are feeling can be a helpful first step.
It may help to:
- give yourself and your child permission to talk about what has changed
- remember that different family members may experience grief in different ways
- avoid comparing your child’s recovery with other children
- celebrate progress and what your child can do, while acknowledging what's been difficult
- milestones and transitions may bring new feelings of grief
- stay connected with people who understand what your family is experiencing
- move your body as gentle and regular exercise has positive effects on your mental health
- reach out for support when you need it.
“Most importantly, you don’t have to choose between grief and hope. You can feel sad about what has changed while also celebrating progress, finding new strengths and looking forward to the future,” Alana said.
Where to get support
You don’t have to manage grief on your own. If you or your child would like additional support beyond what friends and family can provide, you can:
- talk to your child’s rehabilitation or healthcare team about how you or your child are feeling
- ask about support from a social worker, psychologist or neuropsychologist
- connect with other families who have been through similar experiences through peer support or support groups
- talk to your GP about your own mental health and the support available to you.
“Don’t wait until things feel overwhelming before asking for help. Support can be useful at any stage of the brain injury journey, particularly when a new challenge, transition or milestone brings strong feelings back to the surface,” Alana said.
Listen to Beyond a Brain Injury
If your child has experienced a brain injury, you may also find it helpful to hear from a family who has been through a similar experience. In our Beyond a Brain Injury podcast, one family shares their experience of navigating life after their child’s brain injury, alongside insights and practical advice from health professionals.