There are two grief periods in a terminal illness. Most families only know about one of them.
The grief that comes after a death is the one people expect. The condolence calls, the casseroles, the cards. Society has rituals for it. What happens before the death is less acknowledged and, for many families, significantly harder to carry.
What Anticipatory Grief Is
Anticipatory grief is the term for what starts when a terminal diagnosis arrives. The patient begins mourning the life they had expected. Family members begin mourning the person who is still present. This grief can last months. It carries the same weight as post-death grief but arrives without the same social support. Nobody sends flowers because someone’s spouse is still alive.
Kayla Bonkowski studies hospice and palliative care social work in Sterling Heights, Michigan, and holds a Cum Laude psychology degree from Rochester College. Anticipatory grief is among the most consistent features of the hospice experience she is preparing to work within. It is also among the least discussed — in the clinical literature, in public conversations about end-of-life care, and inside the families themselves.
Why Families Carry It Silently
Families who are experiencing anticipatory grief frequently describe guilt alongside it. They feel they are mourning someone who has not yet died. That registers as a kind of betrayal or premature surrender. They keep the grief private. Which means they are carrying it without the social scaffolding that grief normally produces.
From a psychological standpoint, anticipatory grief follows documented patterns. It responds to specific kinds of clinical support. A family member who is encouraged to name what they are feeling — to say directly that they are already grieving, already imagining the absence, already living in the knowledge of what is coming — often describes real relief from that naming. The grief does not go away. But naming it as grief, rather than as weakness or denial, changes how it can be managed.
Where the Hospice Social Worker’s Role Is Distinct
This is where the hospice social worker’s role is distinct from every other member of the care team. The nurse manages symptoms. The physician manages the medical situation. The chaplain addresses the spiritual dimension. The social worker addresses the psychological reality of what is happening to this family in real time, before the death has occurred.
That requires a specific kind of clinical preparation. Kayla Bonkowski’s psychology background gives her the theoretical framework — grief theory, family systems, the documented differences in how various relationships produce different grief trajectories. Her MSW program provides the clinical tools. The combination matters in hospice settings because the grief that arrives before the death is not identical to the grief that follows it. They overlap, but they require different responses.
Holding Two Realities at Once
There is another dimension to anticipatory grief that is specific to the hospice context. Most grief arrives after a loss. Anticipatory grief arrives while the person is still present, which means the grieving family member is simultaneously managing two realities at once: the reality of the person who is still here and needs care, and the reality of the person who will soon be gone. Holding those two realities at the same time without collapsing into either one — without treating the person as already gone, and without pretending the death is not approaching — requires a kind of psychological flexibility that most people have never had to develop before. The hospice social worker’s role includes naming that difficulty explicitly and validating it as the genuinely hard thing it is.
She fosters dogs in Sterling Heights. She has practiced the kind of patient, non-pressuring presence with frightened animals that anticipatory grief in families also requires: showing up the same way on a bad day as on a better one, without needing the distress to resolve faster than it is ready to.
Giving Permission to Grieve Before the Death
The families who do the best in hospice settings are often the ones who have been given permission to grieve before the death. Who have been told, explicitly and by someone with clinical authority, that what they are feeling is appropriate and has a name. Kayla Bonkowski intends to be the person who gives that permission. Early. Before the grief has compounded into something harder to reach and harder to name.
The grief before the death often shapes how the death itself is experienced. Families that arrive at the bedside already carrying months of unprocessed anticipatory grief are less able to be present for the person dying. Kayla Bonkowski is preparing to address that — early, directly, and before it compounds into something harder to reach.
More from Kayla Bonkowski: What Hospice Social Workers Actually Do All Day and What Happens to a Family When Someone Is Dying. Full background at About Kayla Bonkowski.