A Valentine for My Mother, Marlene

Andi and her Mom in 1987--Marlene was 56

Although my maternal grandmother lived to age 108 and joked about her age, my vibrant mother--a woman of strong faith and will--died at age 75 of Multiple Systems Atrophy (MSA), a fatal neurodegenerative disease from which she suffered for almost 10 years.

MSA patients initially present with Parkinsonian symptoms, but quickly decline into extreme pain, muscular paralysis, physical deterioration, and non-responsiveness to medical treatment. Within a few years of being diagnosed with MSA (after a few years of unsuccessful treatments for Parkinson's Disease), my mother became house-bound, permanently confined to bed, and ultimately admitted to what turned out to be 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 sideways, 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 from her home, I was able to regularly visit my mother during those years. One day when I was 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 to get my attention. 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.” 

    ...with my Mom on her 75th birthday, 2006, seven months before she died

She was right. Had she been the family's beloved old Laborador or suffering Boston Terrier instead of our mother, we would have wrapped her in a warm blanket and taken her to the vet for a final, loving, humane act to end her suffering. Yet such an option was unavailable to her or to her doctors. Instead, the doctors, the hospice caregivers, and we, as family, could do nothing. 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 to form words, but I struggled to make sense of the sounds. 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, clear liquid drained from her nostril onto her lower lip. I pulled a tissue from the nightstand box and gently wiped her nose. I never heard her voice again and returned home, two states away, not knowing whether I would ever see her again.

And then she was gone. After choking on her own saliva and secretions, in the back seat of the car en route to the emergency room, she gave a final agonized gasp, turned blue, and died. I don’t know why her husband and not an ambulance was transporting her. By then, she had no options, no choice. Mercifully, she died then, before any medical professional had the opportunity to intervene, "save her life," and prolong agony.

I wished then, and continue to wish now, that she had lived in a State where doctors and pharmacists were allowed to help her exercise her right to a good death after fighting so long to live a good life. Hospice is wonderful standard of care upheld by compassionate medical professionals and dedicated volunteers. In my mother's case, well-intended palliative care--designed to keep her alive at all costs--denied her a peaceful, dignified, end of life. She was trapped, not only by  a failing body, but by a healthcare system that failed to "do no harm" and by a social contract whereby our suffering pets are afforded more humane treatment than our beloved humans.  

Thinking of you, Mom, this Valentine's Day.  With love, always.

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From the 2/18/21 Albuquerque Journal’s front page:   Lawmakers consider end-of-life options bill

https://www.abqjournal.com/2360801/lawmakers-consider-endoflife-options-bill.html