A Valentine for My Mother, Marlene
A Daughter’s Statement in Favor of Compassionate and Dignified Physician-Aid-in-Dying
By Andrea M. Penner, Albuquerque, NM
Although my maternal grandmother lived to age 108 and was in good but frail health, my vibrant mother – a woman of strong faith and will – died at age 75 of Multiple Systems Atrophy (MSA), a painful, debilitating, and ultimately fatal neurodegenerative disease from which she suffered for almost 10 years.
MSA initially presents with Parkinsonian symptoms, but quickly differentiates itself from related Parkinson’s syndromes by the patient’s extreme pain, muscular paralysis, physical deterioration, and non-responsiveness to medical treatment. Within a few years of first showing symptoms of MSA, she became house-bound, was permanently confined to bed, and was ultimately admitted to long-term hospice care because there was no cure, not even an experimental drug or procedure. Throughout this ordeal, her vital organs and mind continued functioning normally, but her brain was no longer producing sufficient dopamine, and as a result, her body became rigid, her head painfully angled down and to the left, her neck twisted permanently in pain.
Eventually, my mom could not move voluntarily, with the exception of blinking her eyes and moving her index finger. She could still speak, but only with tremendous effort, and swallowing was extremely difficult, limiting her intake of food and water. She indicated that she did not want a feeding tube, but somehow, near the end, after she could no longer voice objection, she was fitted with a feeding tube and ventilator.
Even though I lived hundreds of miles away from her home, I was able to regularly visit my mother during those years. One day, alone with her in the bedroom that had become her universe, and with great difficulty after an 8-year illness, she cleared her throat a few times. I leaned in closely to hear her. Slowly and with great determination, she managed to say, “If I were a dog, you would have put me down already.”
She was right. Had she been the family’s beloved old Labrador or suffering Boston Terrier instead of its human matriarch, we would have wrapped her in a blanket, carried her to the car, and taken her to the vet for a loving, humane act to end her suffering. Yet that option was unavailable to her or to her doctors. Instead, the doctors, the hospice caregivers, and we, as family, could do nothing for her. She lingered in pain and dismay for two more years—knowing that there was no cure possible, no future ahead but more suffering and eventual agonizing death.
The last time I saw my mother, a few weeks before she died, I had the opportunity once again to be alone with her, by her bedside. I held her hand while she alternately slept and stared (she no longer had any normal facial affect). Then suddenly she made eye contact with me, squeezed my hand, and began to speak. She attempted some words, but at first I couldn’t make sense of them. I was imagining profound “last words.” I put my ear to her lips and heard her say, “Wipe…my…nose.” I looked at her face; sure enough, her left nostril was draining clear liquid onto her lip. I grabbed a tissue from the nightstand and wiped her nose. Those were her last words to me.
I was not with her when she finally died. After choking on her own saliva and secretions, she gave a final agonized gasp, turned blue in the backseat of a car on the way to the hospital, and died. I don’t recall the exact circumstances—why her husband and not an ambulance was transporting her—but I am grateful that she died before anyone had the opportunity to intervene and prolong her end-of-life agony any further. I wished then, and continue to wish now, that her doctors had been able to aid her in dying well and with a modicum of dignity. As it was, they could only treat her symptoms, and, like the rest of us, watch her suffer. In the end, she died alone with no aid, no comfort–a death we would not wish on anyone. As a result, I strongly support medical-aid-in-dying as a legal end-of-life option for the citizens of New Mexico and the U.S.