“My child is dying and I'm already grieving”
When a child is dying, parents often grieve before the death: for the school years that won't come, the body that is failing, the child they knew before the illness. They may picture the funeral and then feel horror at themselves for it. Grief and hope can run side by side for months, alongside hospital routines and the care of other children. In a Swedish study of parents whose child had died of cancer (Kreicbergs and colleagues, New England Journal of Medicine, 2004), none of the 147 who had talked with their child about death regretted it, while 69 of the 258 who had not, about a quarter, later regretted it. The parents were asked years afterward, so the study shows what parents felt looking back and cannot say what each child needed.
What to check first
It helps to check how the parent is holding up physically: sleep, food, time away from the bedside, and whether anyone shares the nights. The care team, including palliative or hospice staff, can often help with the practical load and with questions about talking to the child. Grieving before a death is common among parents in this position.
What could be going on
Grief (complicated, disenfranchised, anticipatory): Fits if you are mourning losses that have already started, along with the death to come.
Dual process model of coping with bereavement (Stroebe and Schut): Check whether you swing between facing what is coming and the daily work of caring for your child.
Hypervigilance: Fits if you are on watch all the time, checking breathing, reading every number and sign.
Guilt: Check whether grieving now feels like giving up on your child, or like a betrayal.
Telling them apart
Grief (complicated, disenfranchised, anticipatory): The grief may already be under way for losses that have happened: the child's health, an ordinary childhood, family life before. It can come in waves alongside hope. This is often called anticipatory grief.
Dual process model of coping with bereavement (Stroebe and Schut): The parent may swing between facing the coming death and getting through the day: medicines, appointments, siblings, work. Both sides use up strength. Trouble may show when one side crowds out the other for long.
Hypervigilance: The parent may be on alert all the time, listening for breathing, watching monitors, reading every change in the child's face. Sleep comes in pieces. The body may stay braced even in rare calm hours.
Guilt: Grieving now may feel like abandoning hope, or like wishing it over, and the parent may push the grief away out of loyalty. A moment of wanting it to end can bring sharp guilt. The guilt may stop the parent from speaking about any of it.
Questions to carry
- The last time the grief came while I was with my child, what was happening between us?
- What do I most want to have said or done, whatever time there is?
Also said as
- my son is terminally ill
- grieving my daughter while she's still alive
- anticipatory grief child with cancer
- my baby is in palliative care
- how do i cope knowing my child will die
- i keep imagining her funeral