Anticipatory Grief — In Depth

Anticipatory grief is the mourning you may do for a loved one who is still alive — because you can see where things are heading. A terminal diagnosis. Advancing dementia. A long, slow decline. The person is here, but parts of them may already be gone.

Some people feel guilty for grieving a loved one who is still breathing. There is nothing to feel guilty about. You may be grieving the losses that have already happened — the conversations, the independence, the recognition, the future you planned together.

In a long illness, especially dementia, you may lose the person in stages. First the car keys. Then the kitchen. Then the names. Then the look in their eyes that meant they knew you. Each of these can be its own grief, inside the bigger one.

For many people, anticipatory grief is one of the loneliest forms of grief because nobody else sees it. Your friends may see a person who is still alive. You may see a person who is leaving, slowly, in front of you. The gap between those two realities is often where the loneliness lives.

• You can be sad and still enjoy things — both can be true at the same time
• If it helps, plan small things to look forward to, even on the hard weeks
• Try to keep connections outside the caring relationship — friends, work, hobbies
• See your own GP about a Mental Health Care Plan
• Carer Gateway (1800 422 737) has counselling specifically for this

If someone you love is caring for a dying person, they may already be grieving. The most helpful thing you can say is often not "let me know if you need anything" — it can be something specific: "I will bring dinner on Thursday." "I will sit with them on Saturday morning so you can sleep."

Acknowledge the grief, not just the caregiving. "This must be so hard to watch" can be more helpful than "you are doing so well."

Many people who have grieved for a long time before a death describe a strange relief alongside the loss when it finally comes. The relief is not because you did not love them. For many, it can be because the suffering stopped — theirs, and yours. Relief does not cancel love. It can sit alongside it.

Some people find that after months or years of anticipatory grief, the death itself feels quieter than they expected. Others are blindsided by fresh grief they thought they had already done. Both are normal.

You can grieve a loved one who is still alive but unreachable — an estranged parent, a sibling who cut you off, a relationship that died while the person lived. For many, this is anticipatory grief for a connection that may never be repaired, and the grief of knowing that one day they will die and the door will close forever.

For many people, dementia is one of the most prolonged forms of anticipatory grief. You are not losing your mind for grieving a loved one who is still in the room.