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end of life

When I Realized My Dad Didn’t Want To Get Better

old man

I sat by my father’s bedside in the ICU bay as the techs disconnected the tubes and silenced beeping machines. The nurse asked me and my mother if she could get us anything. I was confused. There wasn’t a single thing we needed that she could provide. I knew what I wanted. Another hug from my dad. One more wisecrack. A final bit of advice delivered with the utmost confidence regarding an issue about which he certainly knew nothing at all.

When the nurse left, I read my father his favorite Robert Frost poems. I whispered words I knew by heart in a shaky voice as the color quickly drained from his face. As secular Jews, Frost’s poems were our prayers and Off-Broadway theatres our temples.

It took fewer than 10 minutes from the moment the supports had been disconnected until he was gone, but it had been a long time coming, even though the doctors wouldn’t admit it.

My dad started falling in the summer of 2005. He was living alone (my mom had moved out the year before), and he hid his falls from me until one day he forgot to keep his own secret.

“I fell again, and they said there’s water on my brain,” he told me on the phone.

“Again?” I asked.

The author and her late father, Neil Cohen.

I was already scheduled to fly from New York City to Pittsburgh that weekend to help clean out my childhood home so my dad could sell it. My older brother had flown in from the West Coast and called me with a report. Dad didn’t seem like himself. He was agreeable, docile, contrite, not at all the force to be reckoned with that he had always been. My brother is not one for the dramatic, but just this once, I hoped he was exaggerating. He was not.

We knew our dad was depressed and on medication that might need to be adjusted. After years of unemployment and underemployment, a gambling addiction and massive debt were beginning to become apparent. The professionals told us everything was under control. He was progressing in his talk therapy — “a model patient,” they said. And though the medical doctors couldn’t conclusively diagnose him — “Were seizures causing the falls, or had a fall caused the seizures?” — they assured us “things would get better.” They did not.

One morning in late October 2005, I got a voicemail on my cell phone as I surfaced from the depths of the New York City subway system. My father had found himself on the bathroom floor of the small rented apartment he shared with his cat. He didn’t know how long he’d been there. He was admitted to the hospital and over the next several weeks, he would contract E.Coli, pneumonia and a blood clot in his leg. He would display symptoms of psychosis and aphasia. He would need a vascular surgery and two brain surgeries.

My father did not have a care directive, but he had always been clear with us. As secular Jews, it wasn’t a question of heaven or hell, just how you lived your life. We valued quality over quantity in that regard. He was not in favor of life-prolonging measures, and he was famously claustrophobic. He talked frequently about his fear of being trapped in his own body.

I carried this knowledge with me as his health care proxy. Several times I told the doctors I was uncomfortable about the direction they were taking his care. I was repeatedly told that this was not “an end-of-life issue.” They continued to suggest courses of action and decisions that would get him “well enough” for them to properly diagnose and care for him.

And yet, I felt him slipping away. His personality, once well-defined and predictable, became erratic and marked by paranoia. Each time I flew home I found a different version of my father. Occasionally I’d recognize his wit and wisdom, like the night we watched “The Natural” together one last time and talked about what it must have felt like for Roy Hobbs to play catch with his son. I wish I could say I savored those moments, but more often than not, I was too busy, following doctors’ orders and trying to get my dad to participate in his own care, to realize how close we were to the end.

After the second brain surgery, I asked the surgeon about the mind-body connection. Between the weekend my brother and I spent with him and the fall in October, his depression had presented itself more clearly.

“What if he doesn’t want to get better?”

“Your father could impede his rehabilitation but he can’t impede my ability to fix his brain,” he said.

“You don’t know my father,” I responded.

I’ve never been so sorry to be right.

In the end, there was a powerful seizure which prompted the doctors to intubate my father and put him in a medicinal coma. When they called a few days later to say they would need my approval to surgically implant a feeding tube and ventilator, I asked what would happen if I refused. The doctors told me they had done all they could do, admitted defeat and acknowledged without life support, my father would die. They may have done all they could do, but they didn’t give us peace of mind.

That came from my dad himself.

Six weeks after my father left his apartment for the last time, I called to tell my brother we had to make a decision about further medical interventions or turning off the machines.

“We’re not making a decision,” he said. “We’re carrying out Dad’s wishes.”

And while the thought of losing my dad even a moment before we did is devastating, I wish I had trusted my gut more than I trusted the doctors. My dad didn’t want to get better, and my dad always got his way.


This post is part of a series supported by MJHS Health System and UJA-Federation of New York to
raise awareness and facilitate conversations about end of life care in a Jewish context.
To learn more about the role of hospice and its value to patients and families click here.


 

The opinions expressed here are the personal views of the author. Comments are moderated, so use your inside voices, keep your hands to yourself, and no, we're not interested in herbal supplements.

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