What My Dad’s Death Taught Me About Dying

Three years ago, my father and I rode horses together for miles and miles of trails at a Florida state park. Two weeks after that, the world shut down and two years later, he died. His dying was my first very close-up experience with serious illness and death.

If we’re lucky, we learn something from our parents about how to face the end of life. Maybe they talk to us about how they want to spend their last days, what they most fear, how they feel about us, and what they believe about an afterlife. But for my dad and me, it didn’t go down like that.

He came home from his second to last hospital visit and sat me down to go over how much money would be available to take care of mom, and where he wanted to be buried. A few minutes later, he yelled at me for moving a chair he used as his resting post between the living room and the bathroom.

As it turns out, dying looks a lot like living. In retrospect, I find this enormously comforting and wouldn’t want it any other way. In my father’s dying, here are the other big lessons I learned.

Quantity of Time Can Trump Quality of Time.

The biggest lesson dad’s dying taught me is that life is precious, even when it’s bad.

I’ve spent my career trying to reform and mitigate the overly interventionist nature of our healthcare system. I wrote about this in one of the first Daughterhood blogs, “Your Parent’s Death: Facing Fear and Finding Meaning.”

So, I came into my dad’s situation primed to do battle with the evil healthcare industrial complex. He was diagnosed with a severe version of Myelodysplastic syndrome (MDS), which is basically when your bone marrow stops making new blood cells. My dad’s version of this illness was so severe that he required red blood cells and platelets infusions every week, which translated into traveling to the hospital infusion center nearly every day to wait for hours for this process to unfold. It was painful, time consuming, boring, and exhausting.

There are many other awful details – hospitalizations for pneumonia and lung fluid — but whenever his Oncologist asked him if he was done fighting, he’d always say, “no.” He was still living his life, however hard. He looked forward to my macaroni and cheese for Christmas dinner, to his conversations with my sister. We watched wildlife documentaries. He’d perk up for classic sitcoms and sitting outside on the porch. He rallied for several nights the last week of December 2021 to tell long stories to his grandchildren about how he met my mother, his time in the Marine Corps and the Virginia Military Institute.

On the last morning that my kids or I would ever see him, he came to the breakfast table and bravely told them he was proud of them and that they should aim high in life… “reach for the fruit high up in the tree.. anyone can pick low hanging fruit,” he said. Over a month later and about forty-eight hours before he died, as his heart slowly stopped in the North Florida Regional Hospital emergency room, he rescinded his Do Not Resuscitate (DNR) order to continue living mechanically for the time it would take my sister and me to arrive and hold his hands while he took his last breath.

Dying is Not Linear

Lesson number two is that we are all are alive until we aren’t.

On one of the interminable infusion days in the fall of 2021, I barged into the infusion nurses’ break room to ask my question, “what will my dad’s death be like?” I was trying to figure out what would happen if he were to forgo the frequent blood transfusions and move into Hospice care. How long would it take and what would his death be like? If anyone would tell me the truth, it would be these nurses, who had become like family to us.

But they couldn’t because they didn’t know. I couldn’t get anyone to answer that question.

My father died on February 9^th and yet on February 5^th, I talked to him about normal stuff… work, his frustrations with his computer. “We’ll figure it out when I get there in a few days,” I said.

I guess I thought death would announce itself. There were so many moments in the six months leading up to my dad’s death, I was sure, “this is it!” I cancelled the meetings, booked the airline tickets, rushed to the hospital.

I had pictured a long deathbed vigil, but we only had 24 hours when we really knew that this, for sure, would be the end. As I’ve talked to friends and experienced deaths of friends and colleagues over the last year, I’ve noticed this phenomenon. There’s no linear process – no guidebook for how it will all play out.

The Hospital Can Be a Good Place to Die

Lesson three: There’s no one-size-fits all approach to dying.

In healthcare policy land, I’ve been indoctrinated that dying in hospitals is a bad outcome. We should aim to die at home, say the proponents of palliative care and hospice. But while I know that many people prefer to die at home, I also know that many caregivers report being stranded there with stressful medical responsibilities.

Here’s what I experienced. The hospital – the ICU at North Florida Regional Hospital in Gainesville, FL, specifically – was an incredibly supportive environment for my family to spend the last precious two days of my dad’s life.

As I mentioned above, my father’s heart gave out the first weekend in February. He was transported to the emergency room where, in a moment of clarity, he rescinded his DNR, was intubated and admitted to the ICU where he lived for another 48 hours before we asked for the life sustaining treatment to be removed.

I arrived a day after he was admitted. The first thing I saw was a picture of a rose on his hospital room door – to indicate a dying patient and family. I was greeted by a palliative care physician’s assistant who explained what they were doing to temporarily prolong his life while the family arrived. Then we made a “plan” for removing these measures when we were ready.

From this point on, we were given privacy and a measure of quiet. Occasionally we could tell that my father was uncomfortable, and we’d ask for more pain medication. The hospital chaplain came by. Our family chaplain came by. In short, we felt held in a sacred space by the medical team and our ministers.

The respiratory team asked us to leave the room briefly while they removed the intubation, and then we were all alone – my mother, sister, and me – to be together during the last 20 minutes of my father’s life. I don’t remember the names of our nurses, but I remember their support and kindness.

I am sure that our access to such great care was due, in no small part, to my father’s top shelf insurance status. He had traditional Medicare fee-for-service coverage plus employer sponsored retirement secondary insurance from the federal government. I don’t know if we’d have had nearly 48 hours of a single room in an expensive ICU bed otherwise.

As he took his last breath, I had a vivid vision of him riding his horse – who had died only one month before him — in a beautiful sun-drenched field filled with wild-flowers and trees.

And in that moment, I realized that living and dying are the same… hard, beautiful, painful, bittersweet, and unpredictable.