Anticipatory grief

Anticipatory grief is grief felt before a death, while someone close to you is living with a terminal illness or dementia. It can bring anxiety, guilt, exhaustion and moments of picturing life without them, and it is a normal response.

When it happens

It most often comes while a family member or friend has dementia, cancer or another terminal illness, when the outcome is expected. Carers feel it in a particular way, because the grieving runs alongside the work of looking after someone. Feeling it does not mean you have given up on them.

What it can feel like

Anticipatory grief can hold several losses at once: the person as they were, the plans you shared, the future you had pictured together. People describe anxiety, anger, loneliness and guilt, and some feel survivor’s guilt. Many catch themselves imagining life after the death and then feel ashamed of it. That is part of it too, and so is the tiredness of caring. It has the waves of ordinary grief, with the strain of the nights on top.

Where support comes from

Healthcare professionals, such as the hospice team or the district nurses, can help, and bereavement charities such as Cruse Bereavement Support and Marie Curie offer support and ways to manage the anxiety. You do not have to wait until after the death to ask them. Small things help as well: sleeping when the person sleeps, letting the nurses take some of the nights, and accepting the meals people bring.

After the death

Grieving beforehand does not stop the death arriving as a shock; families who prepared often say it still did. Some people also feel relief when the caring ends. That relief is the natural end of the caring, not a betrayal. Grief counselling is there afterwards if you need it.