Grandparents grieving a grandchild who died of cancer

A grandparent who loses a grandchild to cancer mourns the child. At the same time, they watch their own child go through the worst thing a parent can face. That child is an adult now, but still theirs.

There is no fixing the second part. Most bereaved grandparents say that is the hardest piece. The urge to protect your child from pain runs straight into a pain that nothing can touch.

And all of it happens while everyone around them treats them as the support act.

Condolences go to the parents. The questions at the funeral are about how the parents are coping. Practical help arrives at the parents' house.

People ask grandparents how their son or daughter is doing, over and over. They rarely ask about the grandparent. Many answer by tightening up and getting on with it. That seems like the useful thing to do.

Being the strong one is a role. It is not a description of how you actually are.

NCI's description of grief reactions does not sort people by their place in the family. It just describes what grief involves.

Right after a death, NCI describes emotional numbness, shock, disbelief, or denial. It also lists anxiety about separation from the person who died. Then crying, sighing, and intrusive thoughts or visions of them. Then anger, sadness, broken sleep, changes in appetite, fatigue, and guilt.

NCI also describes grief bursts. These are intense episodes lasting around twenty to thirty minutes. Reminders usually set them off, such as holidays, the anniversary of the death, or giving away the person's belongings.

For grandparents, the triggers are often things nobody else in the family notices. A school run past one corner. A toy that lived at your house instead of theirs. The particular silence in a room that used to hold a child on Saturdays.

Guilt sits on NCI's list of common grief reactions. Among bereaved grandparents it often takes one form. It feels like the generations came in the wrong order. It should have been you.

That is a feeling, not a moral fact. It is also very common. Arguing with it rarely helps. What helps more is saying it out loud to someone who will not rush to talk you out of it. That is often a counsellor or another bereaved grandparent, rather than a family member who is already stretched thin.

Here are some ground rules bereaved families tend to reach in the end:

• Follow their lead on when to talk about the child, and do not avoid the name
• Offer specific help instead of open-ended offers, because decisions are exhausting
• Look after surviving grandchildren, who often get less attention in the months after a death
• Do not measure your grief against theirs, and do not let anyone else do it either
• Get your own support from somewhere other than your child

Grandparents skip that last one most often. It matters. NCI notes that lack of social support is one of the interpersonal factors linked with poorer bereavement outcomes. It also notes that religious participation seems to help mainly through the extra social support it brings. Staying connected to other people is not a soft extra.

NCI describes normal grief as a move from numbness and disbelief towards acceptance. It says most bereaved people show improvement in their symptoms between 6 months and 2 years after the loss. That is a range, not a timetable, and grief bursts can still arrive long afterwards.

Complicated grief is different in kind, not just in degree. NCI describes it as grief where the symptoms do not improve. It lasts a long time, causes extreme distress, and affects many areas of a person's life.

If that sounds like where you are, treatment exists. NCI describes cognitive behavioural approaches built specifically for complicated grief. It also notes that antidepressants can be used where depression is part of the picture, but that they give less relief and take longer to work than they do in depression that is not tied to grief.

Ask about hospice bereavement services first. NCI's hospice summary says Medicare requires every hospice to run a bereavement programme serving families and other individuals for up to one year after the patient's death. These programmes often include support groups and one-to-one therapy. Grandparents are entitled to use them. Very few think to ask.