Talking about dementia grief almost forces definers to lean on ancient Roman Catholic theology. Books like “Living in the Land of Limbo” and websites like that of the Family Caregiver Alliance’s, “Caregiving and Ambiguous Loss,” articulate the tangled mix of anticipatory, ambiguous, and complicated grief experienced by family dementia carers.

Anticipatory grief is common to all those intimate with anyone dying in the immediate future. Ambiguous grief is experienced when a person who is still alive is experienced as lost, gone but not gone.

Complicated grief, a.k.a persistent complex bereavement disorder, is an obsession with a loss persisting over a year or more.
The family dementia carer knows that their loved one will die – but the timing is unclear. Though the LO is still physically and (perhaps) spiritually alive, what they were to the spousal carer – lover, companion, coworker, best friend, flesh of one flesh – slowly disappears.

Each loss is an opportunity for grief.

And when the years build-up and one is bound by heart and oath to someone unrecognizable as one’s life partner but still standing as a husk, that’s complicated grief. What a confusing, misty, strange zone.
So how perfectly called “limbo.”

In old Roman Catholic theology, limbo was a place between heaven and hell where those who were good or sinless but unbaptized – the Hebrew Patriarchs and unbaptized babies – could rest after death.

They were not condemned to punishment in the hell of sinners, but neither were they allowed to be in the presence of Glory. Spousal dementia carers are not yet widowed, nor are we free. Our lives are not alone though we are lonely. We are in limbo.