“Grieving the Living!” (caregiver grief)

The author of this article, Linda Jordan, manager of Duke Community Bereavement Services, writes beautifully about caregiver grief.  And she rejects the term “anticipatory grief,” stating that the losses are here and now.  (Losses are to independence, physical control, speech, memory, cognition, etc.)  The author is focused on Alzheimer’s caregivers.  I’ve replaced the term “Alzheimer’s” with “neurological disorder” as I believe the concepts apply equally as well.  Here’s an excerpt:

“[As] long as the person with [a neurological disorder] is alive, caregiver grief, though appropriate, is generally not recognized or sanctioned. The community is more likely to associate grief with a physical death. Yet, grieving the living is real; it is constant and complex; and it is important that caregivers receive help in managing it.  When grief is acknowledged… the concept most often used is anticipatory grief. Although this term has value, the losses incurred with [a neurological disorder] are not just future; they are actual and profound in the present. Each pre-death loss in this progressive disease is compounded by all previous losses and introduces new tangible losses, as well as potential losses in the future.”

The remainder of the article encourages healthcare professionals to apply Therese Rando’s six grief processes in working with family caregivers experiencing caregiver grief.  Some interesting stories are shared.  Here’s a link to the full article:


Grieving the Living!
North Carolina Medical Journal
Volume 66, Number I
By Linda E. Jordan, DMin, CT
January/February 2005