The Hidden Grief of Caregiving

When someone you love develops dementia, chronic illness, or disability, you grieve them while they are still alive. This is called ambiguous loss, and it is one of the least talked-about aspects of caregiving.

You miss the person they were. The conversations you used to have. The plans you made together. And yet you cannot fully grieve, because they are still here.

This kind of grief is exhausting in a way that's hard to explain to anyone who hasn't lived it. You feel guilty for grieving someone who is alive. You feel angry, then guilty about the anger.

Knowing it has a name helps. Ambiguous loss, a term coined by therapist Pauline Boss, validates what you're feeling. You are not losing your mind. You are not ungrateful. You are experiencing one of the hardest forms of loss that exists.

Giving yourself permission to grieve — without waiting for a funeral — is one of the most important things a caregiver can do.