My mom died three weeks ago. She had ovarian cancer. Or what they suspect started as ovarian cancer. By the time the CT scan was finally ordered, the disease had spread throughout her pelvis.
When my friends ask how I’m doing, I say, “I am full of grilief.” Grief for what my mom endured. Relief that it’s finally over. Grilief.
During the 99 days between Mom’s diagnosis and death, she was either undergoing chemotherapy, dealing with the side effects of chemo or seeking ways to relieve her pain. Her hair fell out. She couldn’t eat. She grew weaker and weaker. A tube was placed in her abdomen to drain the fluid. She looked like a cruel science experiment. On her 77th birthday, her doctor told her the chemo had not worked; the cancer had spread. There was nothing more they could do.
That’s when my dad, two sisters and I began caring for her at home. It was easy at first. We helped her sit up, squirted Roxanol under her tongue. “I’m soooooo happy,” she’d say as the drugs kicked in and we tucked her back in bed.
Baby Bird, we called her.
We thought this was how it would all go down. We’d keep giving her drugs until she died of happiness. But that, we came to learn, is the easy road to death. There is another road, a road euphemistically called “the difficult road.”
For reasons we may never fully understand, Mom began to suffer from something called terminal agitation, which sounds like something you might experience at an airport when your flight is delayed. But it was nothing like that.
Mom begged to be put to sleep, then begged for her old life back. She stayed awake for 48 hours straight, talking to herself. She complained that my dad smelled like tomato soup. She told a hospice nurse that we were withholding food from her. She flailed her arms and spouted premonitions about the daughter of a local meteorologist.
Our mom had been a sweet, well-mannered woman known for countless acts of kindness. This was not our mom.
We called this person Dark Mom.
The change in Mom’s behavior was shocking and bewildering. And, we later learned, not uncommon. According to the National Hospice and Palliative Care Organization and Hospice Pharmacia, 42 percent of dying patients experience some form of terminal restlessness in the final 48 hours of life. Mom’s agitation lasted five days.
When we could no longer care for her at home, Mom was taken by ambulance to a hospice facility. She insisted she had arrived by airplane. She slung insults, called the nurses “novices.” She tried to hitch her bed sheet to the ceiling fan and climb to freedom. She asked for a gun.
Kimmy, one of the nurses, told me I would miss this phase of Mom’s journey.
“There is no way,” I told her.
But Kimmy was right.
By the time the hospice staff got Mom’s agitation under control, she became unresponsive. She lay with her mouth open, gazing into space. Her breath grew shallow, irregular. She ran fevers, her fingertips turned blue, the skin of her face turned orange, then white, then gray. Her left ear lost its familiar shape.
While we waited for Mom to die, my sisters and I whispered to the nurses. “Isn’t there something you can give her to help her along?”
“Everyone asks us that,” they said.
The nurses did everything in their power to make Mom comfortable. They administered her meds, bathed her, swabbed her dry mouth with a tiny blue sponge, and worked in tandem to gently move Mom from her side, to her back, to her other side.
Despite their efforts, Mom’s brow was often furrowed. Her exhale had that sharp sound you make after a hard cry. When Dad kissed her and stroked her cheek, tears pooled in the corners of her eyes.
On Monday, we learned that the governor of California, Jerry Brown, had signed a measure to help terminally ill people end their lives.
Before Mom’s cancer took her down the “difficult road,” my sisters and I had never given assisted dying much thought. If I’d heard about a proposal to give doctors the right to prescribe lethal doses of painkillers to terminally ill patients with less than six months to live, I wouldn’t have opposed it, but I might not have considered it an essential and deeply humane piece of legislation, as I do now. I still recognize the medical and religious reasons many hold for opposing it, but having watched someone I love suffer at the end the way my mother did, I could not in good conscience feel anything but gratitude toward this measure. We don’t know if Mom would have wanted a physician-assisted death if it had been available in our state. But watching her die — knowing that there are so many others out there who suffered longer and without hospice support — made us wish that everyone at least had the option.
One of the great accomplishments of 21st-century medicine is our ability to mitigate and abbreviate pain, to spare patients needless anguish. When we were caring for Mom at home, a hospice nurse brought us a “comfort pack” of medications, which we stored in the refrigerator and used to ease her pain, delirium and anxiety — common symptoms in terminally ill patients. Once she was taken to the hospice facility, the nurses administered these medications under a doctor’s supervision. But because her symptoms were constantly shifting and magnifying, the dosages changed too, and it soon became impossible for my family to distinguish which of Mom’s symptoms were due to the disease process and which were due to side effects of the meds. We agonized over her agony, and I wondered why, if there were medications available to “cure” Mom, to completely eliminate her suffering and transport her with love to her ultimate destination, should she not have the right to that medication if she wanted it? Having watched what she went through, I would certainly want it for myself.
Everyone knows that death is inevitable, but we don’t spend enough time talking about the reality of it. Death doesn’t come like it does in the movies. You don’t always say something profound, close your eyes, and drift away. Death can be protracted, ugly and painful, and we can’t remove grief from the process of dying and letting loved ones go. But surely we can pass laws to give people the option to die without suffering needlessly.
My older sister and I had the honor of holding Mom’s hand when she finally passed from this world. A wave of grief washed over us, followed by a wave of relief.
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