There is a form of grief that has no public ritual, no bereavement leave, no casseroles at the door. It is the grief of watching someone you love slowly become someone different — through dementia, a progressive illness, or the long decline of aging. They are still here, still present in some form. But the person you knew is changing, and you are losing them in pieces, over years.
Psychologists call this anticipatory grief, and it is one of the most common — and least acknowledged — experiences in caregiving. Studies suggest that caregivers of people with dementia often describe their grief as more painful than the grief they feel after the person's actual death, in part because there is no social permission to mourn someone who is still alive.
What anticipatory grief can look like: deep sadness when looking at old photographs; anger that surfaces without an obvious cause; moments of wishing the situation were already over, followed by crushing guilt for having that thought; a sense of loneliness that is hard to explain to people who are not in the same position. All of these are normal responses to an abnormal amount of sustained loss.
Giving yourself permission to grieve — without waiting for a conventional endpoint — is not morbid. It is honest. Grief is not a failure of loyalty or love. It is love responding to loss, and it needs somewhere to go.
Some things that help: naming the grief out loud to at least one person, whether a friend, a therapist, or a support group; keeping a simple journal; finding a caregiver-specific grief group (ConnexOntario can connect you to options in your area); or using a tool like Liam's Call to put words to what you are feeling in a low-stakes space. You do not have to be alone in this, even when it feels that way.
