Aug 02, 2023

This isn't a "Here's how you should live your life" post. I'm just telling you my experience in the hopes of saving you some grief. Or saving you from inflicting grief on others. Also, it's more banishment. It was time for me to publish this.

On the radio today, I heard a talk show host say about a politician in the news, "I'd really like to sit down with that guy and talk some sense into him, because he's irrational."

That is what's known as a self-negating statement. When people are irrational, you won't be able to talk sense into them. Ever. Under any circumstances. Don't even bother trying, because it'll cause you nothing but pain.

My father was terrified of cancer. He was officially diagnosed with osteosarcoma on January 16, 2013, but after he died on February 23, my brother Tim and I determined by looking at his medical records and talking to his doctors that he'd known about his cancer for nearly two years. He'd done almost nothing about it, except undergo one biopsy that was inconclusive. A note accompanying the biopsy results read, "No evidence of malignancy was found. Further tests are recommended."

Dad interpreted that as "No evidence of malignancy was found. Hooray!" He blocked out the rest. What he did is called "whistling past the graveyard." In Dad's case that's exactly where he ended up: in the graveyard. Not literally. He's actually in an urn.

For almost two years, Dad got weaker, thinner, and more androgynous as his endocrinological system broke down. We knew something was terribly wrong because he underwent a dramatic physical transformation. He developed red apple cheeks, lost all his body hair, and sprouted vestigial breasts. Most importantly, he grew a gigantic, rock-hard tumor in his abdominal region that he hid from us by wearing baggy clothing. After he died, we found that he'd bought underwear with a 52-inch waist. Apparently, his plan was to just keep getting bigger clothes to accommodate his expanding tumor. That means he was aware of his dire condition.

During his two-year final illness, we'd ask him if he was all right, since he walked around wincing and groaning.

"I'M FINE!" he'd shout. "WHY DO YOU ASK?"

Of course we couldn't say, "Because you look like the cadaver of an old German woman." Sometimes it's just not possible to tell people the truth. And when they fight you as viciously as they can, every inch of the way, at some point you give up and let nature take its course. It's over. You accept the inevitable outcome.

There's no doubt that Dad knew he had cancer and that it was killing him. But he pretended it wasn't happening. The price he, Tim, our mother, and I paid for his irrationality was incalculable. Though I can't describe it to you in a way that would do it justice, I've found a video that approximates what it was like. It's five minutes and thirty-three seconds long.

My father was in this state for almost a month.

We spent nearly every hour of that month caring for him and trying to convince him to eat, because the doctors at City of Hope said that they could operate on him only if he didn't lose any more weight. The day he saw on the doctor's computer screen how far the cancer had spread during the two years he pretended to be healthy, Dad became the driver in that video.

Instead of saying, "I'm all right!" over and over, he said, "Do you see all the squirrels?" or "Have the reports gone out?" or "We need to negotiate the treaty with the Russians!" But he wouldn't eat, and he couldn't explain why he wouldn't. His fear of death drove him genuinely insane. He was so afraid that he couldn't even address the issue of how to save his life. The entire subject of mortality had to be avoided. Dad did so by taking refuge in madness.

When it was clear that we couldn't help Dad or keep him at home, we arranged to put him in hospice. The conversation we had with the nurse who came to evaluate Dad was absolutely surreal. Dad took eighteen daily medications. What we had to do first was choose which medications to withhold so that Dad would die more quickly. Prolonging his life would've been unspeakably cruel, since Dad was hysterical. "It's hell when your brain doesn't work!" he'd complain. His agitation made him completely unmanageable. He wandered, he fell, he ran around, and he raved nonstop.

We talked to the nurse for two hours, and he told us that the hospice would not withhold food or liquids as long as a patient accepted them. They'd ask Dad all the way until the end if he wanted to eat or drink. If he went into a coma, however, we had to specify whether or not they would feed him with a stomach tube. The nurse explained that a coma was the final stage in the dying process. Dad would be unconscious and would therefore not feel hunger. Feeding him would only delay his death. Tim, Mom, and I discussed it and then asked that a stomach tube not be put in. The nurse checked it off, the way you check off a specific item you've bought on your grocery list.

Another question was liquids. The nurse said that when the kidneys begin to fail, the patient isn't thirsty. Dad had stopped drinking almost all liquids a month before his death, so he was chronically dehydrated. He simply would not drink, and we couldn't force him. We gave him liquid meals to wash down the pills that he still took—the ones that we agreed to keep giving him after we were forced to choose which ones to cut off so that he'd die more quickly. Other than that, he drank nothing.

We requested that if Dad went into a coma, they not hook him up to an IV to hydrate him. The nurse was very kind. He explained again and again that Dad wouldn't be hungry or thirsty if he was unconscious. As an end-of-life caregiver, he fully understood the terrible impact—the trauma—of the choices we had to make. He was calm, professional, and very matter-of-fact, which helped immensely. He pulled no punches but somehow managed to shield us from the horror I was sure we'd feel at literally, factually signing my father's death warrant.

Because of Dad's denial, we had to sit in our living room and state that he should die, not live. We had to take legal and moral responsibility for the methods deliberately applied in order to end his life. His irrationality had forced two choices on Tim and me: First we had to choose which parent to try and save, since both had cancer, and then we had to choose the means by which our father would die. We had to say, because of the law and because Dad was no longer sane, "Do not feed him or give him fluids if he goes into a coma."

I wrote what you're reading not as an attack on my late father but as a warning.

When you indulge yourself by denying reality, you just might cause others to suffer in ways that scar them for life. Tim, Mom, and I will never recover from my father's death. He made it needlessly horrible. But he was irrational and therefore unreachable about the fact that he—like all of us—would someday die. He maintained his irrationality at the cost of his life. First he ensured that he'd die sooner than he should've, and then he forced others to make the decisions that he lacked the courage to make.

It wasn't right.