How We Die
I’ve thought about writing a blog for years but never seemed to find the motivation to do so. Now I find myself writing my first-ever post on a topic about which I had zero experience until recently.
My mother died last week.
She was 81 years old and had been diagnosed with chronic obstructive pulmonary disease (COPD) almost 12 years ago. COPD is a category of progressive lung disease that includes emphysema, and is characterized by increasing breathlessness. She is fully responsible for her disease, having been a 2-pack a day smoker for about 50 years. It was her choice and she claimed to have zero regrets, though she quit cold turkey the day she was diagnosed. She lived probably eight years longer than she should have, surviving on “pure will” according to more than one doctor.
Approximately 101 billion people have died in our planet’s history, so my experience is far from unique. Nearly all of those people had family, friends, or colleagues who were affected by their death. Yet with all that universal knowledge about dying I found myself completely unprepared for how we die. It was horrific, though not in the way I expected.
My mom, my sister, and I knew this disease had no path to recovery. For about 5 years, the end was ‘soon’. The actual end was spurred on by a series of inevitable secondary illnesses that often strike the elderly and infirm.
In December 2016 she got pneumonia, left it untreated for 10 days, wound up in the hospital for a week, then a subacute rehab facility for nearly three months. She was discharged and returned home, where she lived alone with her two dogs.
Mom was recovering well at home for a few months when she had an outbreak of shingles. Again she was admitted to the hospital for a few days, and then back home where, in her weakened state, she struggled to properly care for herself and the dogs. This compelled her to move in with my sister and her husband who could help care for her while she continued her recovery. Admitting she needed help was crushing for her.
If I had to choose a single defining characteristic of my mother, I would say independence: she wanted things her way and did things her way, always. (This was a humorous point of contention because she would get crazy-specific about the tiniest of tasks. Like explaining step-by-step how she wanted me to put books into a paper bag.)
She grew up in Queens, NY, graduated high school early and then, in defiance of her mother’s wishes, enrolled at the University of Chicago. She later transferred to Barnard College in NYC primarily as a path to go to Columbia University’s School of Engineering. It was 1956, and she was the only woman at the school. She went on to have some fantastic jobs, including top secret defense work for the government and ultimately her own IT consulting firm. She didn’t want to deal with employees so she ran her company alone. Clients didn’t hire her, she picked them. And she chose to work with maybe four customers over the course of 20 years.

All that is to illustrate that she was strong, fiercely independent, opinionated, intelligent, glamorous, and ‘untamed’ as one of her cousins wonderfully described her.
And that is why the last week of her life is so tragic and haunting.
The illnesses on top of the advanced state of her COPD made breathing even more laborious. She was prescribed low doses of morphine, which helped relieve the sensation of pressure on her chest, and low doses of an anti-anxiety medication to alleviate the panic that ensues when you feel like you can’t breathe. These medications were the first step toward her demise. They made her a little “loopy” and she would occasionally forget what she was saying mid-sentence or utter some complete nonsense. But it was ‘cute’ more than it was ‘scary’. They also suppressed her appetite.
Then she stopped eating altogether. My sister called me on a Friday morning, about two weeks after the most recent hospital stay, to say that mom had reluctantly eaten only a few bites the day before. Then she called me early Saturday to tell me she hadn’t eaten anything at all. My family and I immediately got on a plane to NY.
We arrived Saturday afternoon and mom was coherent, though clearly weak and could only speak a few sentences at a time before growing exhausted. We talked about everything we possibly could, knowing the end was coming sooner than anticipated.
By Sunday morning she was only able to speak a sentence every now and then. She was cognizant of this, and as she continuously failed in her desperate attempts to talk, she grew increasingly frustrated.
On Sunday night, my sister had to lay across mom’s legs because she kept trying to get out of bed, and she was no longer strong enough to walk around without help. We later realized that she was simply trying to sit up since breathing was easier in an upright position. Because she was unable to communicate complex ideas, it took us a while to figure that out. We moved her to a recliner in the other room and she was instantly more comfortable.
Monday was a disaster. Her speaking was reduced to mostly grunts or the occasional “yah” or “no”. Both my sister and I talked to her endlessly, frequently crying and causing her to cry in response. It was excruciating to see her so miserable, and there was little we could do other than ask for an increase in her medication.
Monday night I got angry. My sister and I took shifts sitting with mom so that she wouldn’t wake up alone and scared. While I sat with her, she kept sliding out of the recliner and I would pick her up and put her back. My sister came to swap shifts at around 3am, and we eventually discovered the problem. Mom had lost control of bodily functions but was, of course, unable to tell us. She had urinated while she slept, was soaking wet and really uncomfortable. She wasn’t sliding out of the recliner; she was trying to move away from the wet clothes and blankets she was sitting in.
My sister correctly decided that the incontinence pads she had been using were no longer satisfactory and we would need to use an adult diaper. A humiliating experience for this independent woman who managed many years of ‘advanced age’ with no need for them. To make it even more degrading, I had to hold her up while my sister wiped her clean and changed her. All the while she continued urinating on the floor.
As I held her up, her piercing blue eyes stared at me and she meekly hit my shoulders with her fist and stomped her feet. She was furious at the circumstances, and I was angry right along with her. Why did she have to go through this? She was incensed that her children had to care for her like an infant. Her life had effectively ended a few days prior, but she would carry on in this miserable state for who knows how long. This was not fiercely independent. This was not glamorous. This was horribly, unjustifiably wrong.
Tuesday offered more diaper changing, angry grunts, and longing stares. By Wednesday her medication had taken over and she merely sat in the chair. Sometimes she slept. Sometimes she just stared. Sometimes she needed a wet swab to moisten her lips and tongue. She was all but lifeless. She smelled like death. It was like nothing I’d ever experienced. Haunting are the images of her in a near vegetative state, yet knowing she could hear and at least partially process her surroundings.
At 8:42 on Thursday morning, she took her last breath. During the few minutes prior, her breathing had become quick and short, then a brief gurgle, and then nothing. We were simultaneously overwhelmed with grief and relief.
Four or five days might not seem like a terribly long time. Many people linger on for weeks in such misery. But for my mother, my sister, and I, it was an eternity. It was a brutal, inhumane, and heartbreaking ending to an otherwise fabulous life.
Euthanasia is a complicated topic. Who is to say when is the right time to release someone from their suffering? There are considerations of religion, class, culture, mental state. There are perhaps considerations that those of us still living can’t know or understand. I don’t profess to have any answers. But I know that we treat pets and wild animals with more compassion than we treat ourselves, and that’s mind boggling.
I’m so sad that my mom is gone. Far more grief-stricken than I even expected to be, in fact. But I’m devastated about the way she left. And that has made me cry every day since.