Summary: The Long Goodbye, Reconsidered
A Meditation on Grief That Begins Before Death
You are grieving someone who is still alive. Nobody tells you how to do this because nobody knows. The books about grief assume loss is an event. Your loss is a process. It has no clear beginning and no clear end while the person you love is still breathing.
Dementia grief does not proceed through checkpoints toward resolution. You may accept the diagnosis and months later find yourself back in denial. You may reach peace with the early stages and grieve all over again when the disease advances. The stages model assumes you are mourning something that has happened. You are mourning something that is happening. There is no endpoint to grieve toward, not while they are still alive.
The particular cruelty: you cannot fully mourn because they are still here, and you cannot fully connect because they are partly gone. Pauline Boss called this ambiguous loss. Present and absent, here and not here, grievable and not grievable. The ambiguity is not resolvable. Living with it is not a failure of acceptance. It is what the situation requires.
Other people do not know what to say. Friends who visited in the beginning stop visiting. They say “at least she’s still here” when you are grieving that she is not. You may feel your grief is invisible, that because the person is alive you are not entitled to mourn.
Your grief is real. The person you are grieving is still capable of moments: a flash of recognition, a hand that reaches for yours. These do not undo the grief. They mean the loss is not total. You are grieving, and you are still in relationship. Both are true.
You are doing something impossibly difficult. You are not doing it wrong.