I love telling people that I am a hospice social worker. They’ll quickly say, “You are an angel.” Gay men throw their arms around me. And I confess, sometimes I even wear my hospice ID badge into the grocery store, hoping someone might notice. Saying I work for hospice just lends a certain gravitas to my very existence. Hey, I hang out with dying people. This stuff is serious. And, most importantly, I can handle it.
But, I am no angel. I would say I’m more of a prepper, an anxious mess. I rehearse tragic events in my mind and imagine how I would cope. I anticipate danger at every corner and attempt the impossible: “perfect preparation.” I strive to be ready for anything coming my way just to handle the fear and anxiety. As a first-born, worry just comes naturally.
When I had my first child, I joined La Leche League to become the most perfect breastfeeding mom. I knew my nipple creams. And I kept each child at my breast until they walked off to preschool. When I worried about how my kids were coping at school I taught them at home. When I worried about our parenting styles I jumped at the chance to teach parenting classes, figuring I would soon be an authority. My poor husband never knew what hit him. Our “do” and “don’t” behavior poster on the fridge was as much for him as it was for the kids. Basically I would take on anything to keep my fears at bay.
And then my dad was diagnosed with a brain tumor. My blue-eyed, Argentine dad, asado expert, generous friend, gracious host, and ever a diplomat. There is just no way to prep for the shock of a terminal diagnosis. First there was treatment. Then there was a new normal, a different dad, diminished and aged. He struggled to walk and didn’t make much sense anymore. A doctor told us his brain was Swiss cheese from all of the chemo and radiation. He had developed serious dementia.
He was in and out of the hospital. Each hospitalization was followed by rehab followed by another hospitalization. Until finally, a very kind nurse suggested we take him home with hospice. And so that is what we did.
My parents had divorced and remarried new partners when I was a young adult. My dad and his second wife had been married just eight years when he was first diagnosed. They had been together fifteen years when she took my dad home from the hospital to die.
In the weeks that followed, my siblings and I took turns staying at his bedside. As often happens when the parents of adult children divorce and remarry, there was a subtle awkwardness and sense that we were outsiders in the home my dad and his wife shared. That feeling was magnified as he neared death and we tried to share caregiving.
In what I am now sure was an attempt to maintain a sense of normalcy in the midst of my father dying, his wife planned a party. She didn’t tell us, but we couldn’t help but notice. We would march past the busy kitchen, up two floors of their town home to his bedroom, now equipped with a hospital bed, while below it was clear they were anticipating festivities. We finally learned she was hosting a family birthday party.
The night of the party I sat on my dad’s bedroom floor, while my nine-month-old daughter crawled under his hospital bed, yanking at his catheter bag. I poured through the booklet that my dad’s social worker had given us and recognized that we had all been in denial these last months. All of the signs of his decline were spelled out in that booklet, a grim but comforting how-to on what to expect the weeks, days, and hours before death.
Two floors below, someone attempted to start a fire in the fireplace, forgetting to open the flue. My dad’s bedroom filled with smoke, a kind of incense. Burning. Purifying. And strangely calming. The hospital bed became an altar, a funeral pyre. Even though he had not been awake or responsive for days, it seemed like he lay there smiling at the flubbed attempt to start a fire, an inside joke to deter the party.
Things changed quickly. The air in the room felt electrified. Grasping for comfort, I prayed. I am sure that I saw my grandmothers and grandfathers standing at the end of his bed. There in the room with me I begged them to take my dad on whatever journey was coming. I knew they loved and cherished him as much as I did. I felt oddly at peace.
The window was open to clear the smoke and into the room came a cold January breeze. My dad’s wife had lit candles and his favorite Argentine music played softly. We called hospice. We called family. We all gathered around my dad’s bed holding each other and crying. And then, quietly, he took his last breath.
There was no birthday party that night. The party guests were turned away at the door leaving just our family. We gathered to share a late night Argentine meal, finally brought together in our shared loss.
With the passage of time came the miracle of acceptance and healing. And then I became a hospice social worker. Yes, I am still a worrier. I try to practice acceptance and letting go. For the past seven years, my coworkers and the families we work with have been my teachers. Hospice teaches me that grace comes when we are present to suffering and accept our shared fragility. Forgetting my worries happens in those moments of compassion, the moments when I know we are not alone when we face our fears and our losses together.
[Photo credit to Manuel Hernandez]
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