I was asked recently to present my work on shame and guilt for a documentary about the experience of being in a caregiving relationship. Initially, I felt concerned. My conceptualization of the idea of caregiving circulated around 1) aspects of parenthood and 2) the inevitable life situation of witnessing a parent’s death. I have no experience with either of these. I expressed my concern to the producer and one of the cameramen as we discussed the protocol for the shoot. They suggested I try to tell stories. This perplexed me a little further. Then, in order to offer me a context, they posed questions about times I might have cared for people in the past. Their inquiry uncovered a large range of possible, personal caregiving experiences upon which I could draw. For me, these include experiences involving my in-laws, my aunt’s dying of cancer when I was a child, and, most currently, my tending to a friend who had a massive stroke at the brain stem at the age of 40.
What struck me most during the conversation was the way that I eschewed being called a “caregiver.” The cameraman noted that this was not an unusual phenomenon. Apparently, people consider the word “caregiver” somehow stigmatizing and resist its use. AARP has tried to come up with an alternative term but has not been successful. (As an aside, AARP’s website has useful resources for the caregiver.) The stigma undulating beneath the undertaking of caregiving aligns it with the experience of shame. Continue reading “Shame and the Caregiving Relationship by Stephanie Arel”


