Narrative Inquiry in Bioethics

If you really think about it, no one's allowed to be an asshole for very long in stories about terminally ill family members, including the afflicted themselves. Listless hands plopped on hospital beds must be held, hair compulsively smoothed back from barely conscious foreheads. Everyone patiently leans in to listen to the gasps of a dying person. Pop-pops is trying to say something! Quick, call Amanda, who's studying abroad.

Never mind that Pop-pops has been dying for a dozen years now, wheezing out nonsensical advertising jingles from his childhood every day before his morning Jello. And yes, maybe it is true that the old man never had a kind word to say about anyone and would never do any of this for us, but it's also easier to mentally relegate assholes—especially the unwell ones—into a sort of harmless ol' curmudgeon trope. He's gasping for what may be the last time, and it is mandated to be meaningful so kumbaya, gather around.

The kicker is that people never really know what to do with terminal illness stories when they're odiously and incongruously enmeshed with actual, undeniable domestic violence. We clamor for immediate no contact or external intervention when someone is suffering from mental or physical abuse inflicted by a family member or partner. Domestic [End Page 112] violence stories, by themselves, are no-brainers. It's gloriously simple and cathartic to shake your finger and loudly proclaim, "Get out and don't look back. They're toxic." We shiver with satisfaction at frequently and instantly branding abusers as narcissistic assholes who shouldn't be given the time of day. The problem is that the abusers don't just disappear from our lives, crawl underneath a bridge, and quietly sit there as they reabsorb into the earth. That's not how they die. Like the rest of us, they succumb to disease and list emergency contacts and forget to update wills, forcing entire sets of families to come together at their bedsides when death comes knocking. One would assume that the inevitability of all this is obvious. Yet, after a decade of providing care for a volatile, abusive father with early-onset Alzheimer's and Parkinson's disease, I would come to understand that these two narratives—one of domestic abuse and the other of caring for a patient with dementia—would not be tolerated in the same room. People were simply allergic to this mixture. Depressingly, empathy would typically be withheld unless the unsavory domestic abuse was expunged completely. In its place should be a sorrowful, Still Alice-type screenplay, a tasteful sort of tragedy you could tell on a third dinner date. This was consistently my experience with even my closest family and friends, doctors who pushed for invasive yet ineffective surgeries, and hospice care professionals who smilingly directed me to hold hands and hug my empty shell of a father.

Naively unaware of this dogged expectation in the early stages of caretaking, I would hungrily latch onto conversations about aging parents who have dementia, fully expecting relief at finding folks that just knew what it was like. "I mean, on the spectrum of domestic violence he wasn't the worst out there, but having my mother drain retirement funds for him? And my sister's already-taken weeks off work. It's killing us," I'd indignantly say to someone who'd just finished rattling off about her own abusive elderly mother. Surely someone would understand the rage and guilt that came from taking care of a father whose idea of a fun time was forcing his family into a car and driving blackout drunk on the 101.

The alienation started to creep in when my eager contributions were met with uncomfortable chortles and phrases like, "Well, he was your father … you must have loved him deep inside," or, "You don't mean that. He is your father, after all." After his passing, this would morph into lackadaisical interpretations of my experience, a popular one being, "He died when you returned from grad school? He was clearly waiting for...