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.
Such stigma is curious when set against the reality that most of us will play the role of caregiver some time in our lives, and all of us will eventually, if we have not already, find ourselves on the receiving end of care. This is made more likely by a “successful” medical system, one that is so adept at treating disease and illness that people are living longer and longer. This phenomenon creates, according to emergency doctor Peter Saul in his Ted Talk “Let’s Talk about Dying,” a shift in the way people die: instead of dying due to sudden death, terminal illness, or organ failure, at least six out of ten of us will die of increasing frailty.
So where does shame emerge?
For the person giving care, shame might arise from the feeling of a lack of a capacity to care-give at all, from the human limitations related to caring for a loved one (the need to attend to other family members, jobs, even self-care), and from childhood histories perhaps those of pain related to the dying parent. Old patterns established in childhood surface when the roles are reversed, when a child tends to an ailing parent. An example I used at the interview had to do with the avoidant attachment style – where a child subconsciously assumes that his or her needs from the parent will not be met and so therefore becomes disengaged and emotionally distant. Shame is a central affect in this style because the child feels at once that he or she is disliked by the caregiver; subsequently, the child believes that his or her needs are shameful. When the roles are reversed, and proximity is required for care, both parties are challenged at confronting past or present emotions. This may result in an opportunity for connection, but it may also create additional stress and repression.
For the person receiving care, at least one aspect of shame emerges in the stigma attached to the idea of caregiving, motivated perhaps by a fear of death and a fear of loss of control of the body. If most of us will die of frailty, then this disintegration of our body is an experience we will endure. Alongside fear of bodily deterioration runs the societal shame of aging, a kind of pre-disgust at a natural process. Along these lines, the interviewer asked me about shame related to changing a parent’s diaper. I had no real context for a response, but what he was considering happens to more of us than not. Pre-interview, I tried to read about such cases and did not discover much. The topic is almost taboo.
So how do we manage shame, shame of our bodies that translates in time finally to the shame of dying? How do we help each other through the dying process?
Now that I realize that I have been a caregiver, to many actually, I’ll answer this with an anecdote: I was with a friend (88) and his wife (75) at a gym in Florida. I saw my friend turn white after his workout. I suggested water and walked him to the water cooler, sure to keep a steady hand on his back. He was visibly shaking, and then he passed out. I managed to catch him – both my arms in the crook of his – but his weight led us to the floor. I let myself go to my knees and then leaned back so his body rested against mine. Then I felt the warmth of his urine down my thigh. His wife stared at us in shock. I yelled at her to call 911. She managed the call but could not speak and handed me the phone. The emergency responder told me to move him as little as possible. And so I sat there with him laying nearly on top of me until the ambulance arrived. We learned later that the incident was caused by a stroke. When my friend woke (it was not a debilitating stroke), he was completely full of shame after he realized that he had wet himself and me in the process. My response was to joke with him about it. I didn’t know if that was the right thing to do at the time, but it just felt right.
That moment of our shared laughter offered a discharge of shame. Research has supported this fact: laughing together hinders the detrimental effects of shame avoiding its repression. In situations where we are called to care, we can ameliorate shame through eye contact, by being present to another human, by recognizing the other’s inherent value, and by providing positive touch, which can (and does) change a person’s affect and acknowledges their presence.
Stephanie N. Arel is currently a Post-Doctoral Fellow at Institute for the Bio-Cultural Study of Religion (IBCSR) at Boston University working on the Sex Differences in Religion Project. Her teaching and research interests focus on the intersection of theology, psychology, and philosophy. She is the author of Affect Theory, Shame and Christian Formation (Palgrave Macmillan 2016) and co-editor of Post-Traumatic Public Theology (Palgrave Macmillan 2016).