(In response) to Barak Wolff’s “Quality of life at the end of life” opinion piece in the Jan. 1 Albuquerque Journal: My mother died at age 75 of Multiple Systems Atrophy (MSA), a fatal neurodegenerative disease from which she suffered for almost 10 years.
At first, MSA manifests with Parkinson’s-like symptoms, but the patient quickly develops muscular paralysis, physical deterioration, difficulty speaking, extreme pain and non-responsiveness to medical treatment. Over time, she became house-bound and was ultimately admitted to long-term hospice care. Her vital organs and mind continued functioning normally, but without functioning neuro-receptors, neither taking prescribed dopamine (which is) a standard treatment for Parkinson’s) nor stimulating the brain to produce more dopamine was an option.
Eventually, my mother could only blink her eyes and move her index finger. Her body became rigid, her head painfully angled down and to the left, her neck twisted. Her ability to swallow and speak was compromised. She did not want to be hooked to a feeding tube, but, near the end, when she could no longer voice objection, she was fitted with a feeding tube and ventilator. Her home state did not have provisions for medical aid in dying.
Living hundreds of miles away in Albuquerque, I visited her regularly. One day, about eight years into the illness, I was alone with her in the bedroom that had become her universe. She attempted to speak and I leaned in closely. With great determination, she said, “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 – no curative treatments, only more suffering.
I last visited a few weeks before my mother died. Alone with her, 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. With her left nostril draining 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 en route to the hospital in the back seat of her husband’s car. Although transporting her to the emergency room 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, which would have prolonged her end-of-life agony. Without legal medical aid in dying (she could not die) well at home with her husband, caregiver and family around her. Instead, she died alone with no aid, no comfort, no dignity. I would not wish that on anyone.
Thank you, End of Life Options New Mexico, for supporting New Mexicans when we are faced with difficult choices.