“In response to the question ‘Do you feel isolated as a caregiver because few people know about LBD?’ 40% reported that they felt very isolated for this reason.”

–Galvin, James E et al. “Lewy Body Dementia: Caregiver Burden and Unmet Needs.” Alzheimer Disease and Associated Disorders vol. 24,2 (2010): 177-81.  doi:10.1097/WAD.0b013e3181c72b5d

Few people stick around for the long progression of LBD.  It’s not the kind of disease that makes a good tv episode.  No brilliant surgeon cuts it out.  No sensational moments in the hospital bring family and friends together to hug and sob and chew styrofoam cups and flag down nurses.  There will be no rescue, no triumph, no survival, only the possibility of an earlier, maybe gentler death from some other cause. 

This is not an illness with strong narrative potential.  It’s repetitive: the tasks never end; the demands never relent.  Caring for an infant is the closest parallel, but imagine that exhausted repetition, that blurring of day and night, without any hope and with the prospect of ever greater needs and ever more losses. 

Plans with friends dissolved in the face of his panic and confusion, his urgent needs, my fatigue from round-the-clock care.  Imposing clock time in order to keep a plan required a forcefulness that seemed both punitive and absurd – and was necessary precisely to the extent that I wished to have some part in the world outside.  As months and years went by, it was difficult to tell the difference between giving up friends and being given up by friends.