“If I Were A Dog …”

(During her career as educator, writer, and editor, Andrea M. Penner, PhD, has published poetry and prose in academic and literary journals. Long-distance caregiver for her parents over two decades, she believes in our collective responsibility to ensure a humane end-of-life experience for everyone. Her life-affirming poetry touches on themes of death and dying: Rabbit Sun Lotus Moon (2017), a poetry finalist for the Arizona/New Mexico book award; and When East Was North (2012). A third poetry manuscript and a memoir are in the works. To learn more, visit her blog, andipenner.substack.com. This article was first published in the Albuquerque Journal and is used with permission.)

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My mom, herself the daughter of a living centenarian mother, died at age seventy-five in the back seat of her husband’s car en route to the emergency room against her wishes. She had already suffered for almost ten years with Multiple Systems Atrophy (MSA), a fatal neurodegenerative disease with no cure, no treatment other than palliative care, and no recourse but pain and hospice.

At first, MSA manifests with Parkinsonian symptoms, but the patient quickly develops muscular paralysis, physical deterioration, difficulty speaking, extreme pain, and non-responsiveness to medical treatment. My mother and her husband had joined a Parkinson’s support group, but every week, my mother was further into disease progression than any other group members who had stabilized years before. They were all taking dopamine, a proven, effective drug. Yet for patients like my mother with MSA, not Parkinson’s, dopamine neuro-receptors have long since ceased to function. Over time, my mother became increasingly debilitated, losing her ability to move easily, to write, to stand, to walk, or to perform any activities of daily living. Her head was bent permanently to one side, making it difficult for her to speak or to swallow. She lost her facial affect, which made it difficult for her caregivers to “read” her emotions. Her mind was still sharp—she tracked our conversations and could, with great difficulty, manage a few words. Without dopamine neuro-receptors, however, neither prescribed dopamine (a standard treatment for Parkinson’s) nor electronic brain stimulation to produce more dopamine was an option.

Eventually, my mother could only blink her eyes (a signal for yes or no) and move one index finger. The bradykinesia (muscular rigidity) caused tremendous pain for which she was fitted with a morphine pump. Her ability to swallow and speak was compromised. She did not want to be connected to a feeding tube, but near the end when she could no longer voice objection, she was subjected to a feeding tube and, I believe, a ventilator—heroic (or cowardly?) life-prolonging measures for someone who had no hope of recovery. Without provisions in Nevada, her home state, for legal, medical aid in dying, we could not have that conversation. And if she had expressed her desire to end her life on her own terms, I’m fairly certain her husband would have opposed it on religious grounds.

Living hundreds of miles away, I visited her regularly. One day, about eight years into the illness, I was alone with her by her bedside in the room that had become her universe. She attempted to clear her throat and to speak; I leaned in closely. 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, we would have taken her to the vet for a final loving, humane act, a choice unavailable to her family, doctors, or caregivers. She lingered in pain and dismay for two more years with no curative treatments, only more suffering.

Alone with my mom at her home, a few weeks before she died, I held her hand while she alternately slept and stared. Then she made eye contact, squeezed my hand, and began to speak softly in garbled words. Using the medical suction device, I cleared her mouth of excess saliva. As her left nostril drained clear liquid onto her lips, she spoke the last words I would ever hear her say: “Wipe…my…nose.”

I was not with her when she died. Although transporting her to the Emergency Room (ER) conflicted with her Do Not Resuscitate orders and hospice protocol, her husband likely panicked. I heard from others that she choked on her own saliva and died from lack of oxygen. I am grateful that she was not subjected to ER interventions to prolong her end-of-life agony, which had already gone on far too long. Without legal medical aid to attain a good death at home in the presence of her husband, caregivers, and family around her, Marlene died alone with no aid, no comfort, no dignity. I would not wish that on anyone, especially against her wishes.

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Final Exit Network (FEN) is a network of dedicated professionals and caring, trained volunteers who support mentally competent adults as they navigate their end-of-life journey. Established in 2004, FEN seeks to educate qualified individuals in practical, peaceful ways to end their lives, offer a compassionate bedside presence and defend a person’s right to choose. For more information, go to www.finalexitnetwork.org.

Payments and donations are tax deductible to the full extent allowed by law. Final Exit Network is a 501(c)3 nonprofit organization.