April 7, 2016

Anticipatory Grief: The Long Goodbye of Dementia

One of the hardest aspects of caring for a loved one with dementia is the mind’s inability to process grief and loss when the person you love may be sitting right in front of you (physical presence and psychological absence). This phenomenon has often been referred to as “the long goodbye”; there’s no closure under which one might find peace, yet the person you once knew is no longer fully present or perhaps doesn’t remember who you are anymore. The feeling is similarly felt by people who have had a loved one abducted, kidnapped, or suddenly go missing. Grief is suspended, or frozen, in time and it can feel impossible to move on with life in a normal, healthy way, fluctuating between hope and hopelessness.


Pauline Boss, the principal theorist of the concept of ambiguous loss, encourages the building of resilience in clients who face the trauma of loss without resolution. Boss describes a concrete therapeutic approach that is at once directive and open to the complex contexts in which people find meaning and discover hope in the face of ambiguous losses.

Because these losses are outside of the common human experience, families don't know what to do with their anguish. When these families hear that they "need to move on," it compounds their grief by adding shame. Pauline recognized that therapy is not limited to a one-on-one relationship with a trained therapist. Further, she discovered that community can sometimes be more therapeutic than a single health provider. As with most aspects of dementia care, we are better together than when we try to fly solo; leaning on support sources and community resources can give us the strength and solidarity necessary to keep moving forward.