Many of us write about the grief, the burdens, the frustrations, and the unending pain of caring for a spouse or a parent with dementia, but rarely do we read an article that articulately expresses the confusion and torment that accompanies the disease as it incrementally destroys the essence of a beloved partner. In her February 2, 2011 Salon article, Mourning a Husband Who has Not Yet Passed, Lillian B. Rubin shares her raw pain and disorientation, as she describes how dementia has taken away her husband, Hank.
Rubin recently reached the point where she could no longer care for her husband, so he moved into a more protected living environment. Her writing reflects the anguish of a spouse who must carry on, in a parallel universe, as her partner lives but can no longer embrace the life they had together. A reader keenly feels Rubin’s distress as she attempts to process what is happening to Hank and encounters obstacles as she tries to comprehend a disease that eludes understanding.
But I know now that, even reading the most compelling descriptions in the literature, even listening to the most poignant anecdotes from caretakers, you don’t really know dementia until you’ve actually lived with an afflicted loved one. And maybe not even then.
In another post I write about a PBS interview with Dr. Arthur Kleinman who describes his wife’s dementia, his loss, and the moral and subjective challenges of caregiving.