I’m no expert on death, but a decade ago I held my mother’s hand and watched her die a horrible death. My mother battled a rare degenerative neurological disease for six grueling years. In the end, her spirit was strong, but her body let her down in every way.
We are approaching the 10th anniversary of her death and it is only now that I can write about it. I couldn’t talk about what happened that day for a year. So maybe I shouldn’t have been surprised by the flood of emotions I felt when I read about an elderly Florida woman who shot and killed her terminally ill husband in a hospital room.
my mother had progressive supranuclear palsya progressive degenerative disease similar to AS. PSP patients develop balance problems, vision problems, and difficulty swallowing. They often fall to the point of being confined to a wheelchair, often suffocate, and develop aspiration pneumonia as the disease progresses. PSP is rare – my father and I had to explain the disease to numerous doctors and medical staff when falls or pneumonia led to my mother’s hospitalization.
In the weeks leading up to my mother’s death, we raised the issue of hospice. She was in almost constant discomfort, if not pain, from arm and hip injuries from falls. She received most of her nutrition through a feeding tube and was just able to drink some wine and eat a bite of chocolate without retching and coughing. She was beginning to have a gray pallor. But she wasn’t ready for hospice. She shook her head emphatically “no” when we suggested it was about time. We increased her dose of ibuprofen to relieve her pain and moved on.
The day she died I was at my 6 year old’s soccer game and got a call from her care assistant telling her she was having severe stomach pains. I spent the day with her, along with my father, who came home from a business trip a few hours after I arrived. We called her doctor, got and gave her a prescription to relieve her stomach discomfort — and watched as she grimaced and shifted uncomfortably in her chair. Watching her suffer, I timidly asked her several times if we shouldn’t go to the hospital. She shook her head vigorously no. My mother was done with hospitals.
As the day dragged on, something was clearly wrong. She moaned and sweated and sometimes writhed in pain. I would have given her any drug I could get my hands on. We had no narcotics or medical marijuana. I kept asking if she was okay, if we should go to the hospital, and she kept hesitating. I think she knew this was the end – and she fought through it like a woman fought through childbirth to get to the other side.
When she suddenly stiffened and her face turned purple, I took her hand and began to sob. We think her heart stopped. Her doctor later suspected that the ibuprofen might have caused her to develop an ulcer and bleed to death internally.
Courtesy of Joanna McFarland Owusu
After she died, my father and I stared at each other, tears shed, and we wondered what to do. He called a coroner whose information he had on file and who was trained in carefully harvesting brains for donation to science. Mom wanted her brain sent to a lab that does research on PSP. We called our immediate family to break the news. And then, on the advice of the medical examiner, we called the police.
That day was truly an out of body experience. The police came and began asking an exhaustive list of questions about my mother’s death. What was your diagnosis? What medicines did we give her that day? They asked to see my father’s detailed Excel spreadsheet listing all their medications – as if they could make sense of it. Could a doctor confirm her condition? Could we get through the phone maze after hours to reach her doctor so officers can confirm her condition?
This is how you fold the core of yourself into a tiny piece in times of trauma, my dad and I answered her numbly. My heart started racing as I realized they were trying to find out if we had helped her die. And if we had to be charged with a crime.
Since my mother died, I’ve learned a little more about death. I have learned that PSP patients with the means find their way to Switzerland or the Netherlands where euthanasia is legal and can be carried out in a peaceful, dignified manner in the company of loved ones.
I have learned that at the end of a suffering patient’s life, hospice nurses and other medical workers sometimes blur the legal lines by administering the necessary doses to relieve excruciating pain and hasten the end.
Medical ethicists and experts can analyze these issues. But I can’t stop thinking about this elderly couple who faced a horrific reality and decided that the best thing would be to bring a firearm into a hospital room. I can’t stop thinking about this 76-year-old woman who, desperate to end her partner’s suffering, pulled the trigger and ended his life. And I can’t stop thinking about the police officers who made their way into a barricaded room, threw this devastated woman to the floor and threw her into the gaping maw of the criminal justice system.
I don’t have many regrets in life, but I do regret the way we handled my mother’s death. It wasn’t peaceful or serene – it was horrifying and excruciating.
We humans spend countless hours talking about, reading about and thinking about how we can live a good life. Perhaps in this country we could think a little more carefully about giving someone a good death.
Joanna McFarland Owusu is a writer/editor based in Dallas. Joanna was a federal government analyst in a past life and has long been a political stan and news junkie. When she’s not reading or writing the news, Joanna spends most of her time having two teenage sons and an elementary-age daughter around town as an Uber mom.
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