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well lived

Sitting With My Father in Hospice

Spending time with him at the end, I try to remember who he was at the beginning.

An older man posing for a photo in his kitchen as he leans on the refrigerator. He is slim, has grey hair and dark eyebrows. Wearing a dark grey "member's only jacket", blue jeans with a brown belt, and a black t-shirt with "New York" written in white text across the chest.
Photo credit: Courtesy of Alisa Schindler
Two sets of hands clasp one another. One of the hands wears a bracelet.

Who Cares for the Caregiver?

My aunt told me that when I write the obituary for my father, I need to dig deep and talk only about good stuff. Through the phone at least six states away, I stiffened. My father was not yet dead. I hadn’t even thought about an obituary, much less whether I’d be writing one. But my aunt is a tell-it-like-it-is broad, whether you are ready to hear it or not. Not that I didn’t know where we were. I was the one sitting in his hospital room every day, his fevers unending, his kidneys failing, his cancer spread to his liver and other organs. He was mostly unresponsive, but I sat there day after day, talking with doctors, making nice with the nurses, doing the best I could in a situation where I had no idea what to do and nothing I could do would make it any better anyway.

The truth was, on many levels I was ready. My father has been suffering for a long time. These last 10 years have been particularly hard on him, although the 10 before that weren’t great either. Depression and physical maladies reigned. In his 74 years, he had already had a heart attack, a failed back operation and several mini strokes. He had a previous run in with lymphoma, a neck operation, severe gastro issues and had been hospitalized at least twice in a psychiatric ward. Add to that a lifetime of addiction and you have someone who severely tested the boundaries of mortality. 

Even as a youth, he was reckless, doing crazy tricks on bicycles, jumping from rooftop to rooftop. My grandmother would tell us tales of young Steve coming in for dinner, his face bloodied, his head gashed, yet he’d sit at the table like nothing was amiss. His friends nicknamed him “Scaper” for his ability to escape death.

That was a Steve I knew only through stories. Young, strong, drawing friends and attention with his sparkling green eyes, ready smile and carefree nature. But there was a similar long-ago Steve from my childhood that I did know; a man who has been hidden away in my brain, covered by all the years of drugs and dramas. Yet watching him lying in a hospital bed, his breath hitching with effort, tubes and wires attached, I have time with my thoughts, and time to remember that Steve. I’m so used to being mute in our conversations; just a sounding board while he vents his every problem and ailment. I used to joke with good friends that the only thing that wasn’t broken on him was his mouth, but now he just lies there silent. So, I guess it’s finally my turn to get a word in.

“The truth was, on many levels I was ready. My father has been suffering for a long time.”


Once upon a time you told me stories at my bedside. You made up silly characters like Vernon with a V and Chick Pea and used your fingers to act out their crazy shenanigans. And at the end of it all, you called in the dream truck to carry me away to a land of puppies and rainbows. In summer, you were tan and your green eyes glinted in the sun. You had muscles on your arms and would lift me over your head for a ride on your shoulders. You paid me and my cousins a dollar a minute (a fortune!) to massage your back. There were wild games of hide and seek where you hunted us as a monster. And I knew all my little friends wanted a father like you.

After the divorce, we happily wasted away many Saturday afternoons with double features, arcades and ice cream. And even though it was you, me and little Jason, somehow you were always the most appreciative child there. 

Later, you taught me how to love books and gave me a sense of my own worth when you suggested I’d find a role model in Dagney Taggert. You had a wonderful sense of humor, and a genuine, joyful laugh that sounded a lot like Ernie from Sesame Street. Your brain worked a little different than other people’s. You dramatized and romanticized life, creating fantasies in your mind, dreaming of bigger things. A deep thinker, you loved debate and conversation, and found the world a fascinating, beautiful place. You have always had a sense of wonder and adventure that I may not have always understood, but which I appreciated. You remained young at heart, always, refusing to see yourself as old or disabled or ill. You never gave up your vision of a young, strong you, filled with aspirations that could still be fulfilled and magic carpet dreams to whisk you away. No matter how many obstacles you threw in front of yourself to trip over, you always hoped to overcome. 

Unfortunately, Dad, it seems like we’ve finally hit up against a hurdle that we can’t climb. Even if you use me as leverage, I don’t think we’re going to be able to pull this one off. Your body has decided it’s had enough. I don’t really blame it. I know the suffering it’s gone through.

You haven’t been happy or comfortable in so very long. So now I’d like to think, like you did, that we don’t really know what’s on the other side. It may be a beautiful place of comfort where we are light as air and floating on bubbles. I hope for you that you are forever dreaming of the best that you were. Your humor and intelligence. Your ability to think different. To get excited over possibility and to remain always playful and childlike. I see you under the stars, next to the ocean, running on the boardwalk near your apartment in Atlantic Beach; sand at your feet, sea salt and pepper hair, taking it one step at a time, your eyes on the future. I see you upstate in the lush Catskill mountains, on the softball field, running back for a ball that couldn’t possibly be caught, except by you. I see you reading, book after book, and handing them over to me. “Doll Face,” you’d say, “you’re going to like this one.” And I did. I loved and cherish almost every book you recommended.      

You taught me a lot about myself, about giving, about human suffering, about perspective and about patience, which granted, I still have a ways to go.

Very fit older man with white hair stands tall in a tight fitting black t-shirt and jeans. Also posing with him is a younger woman in jeans and a pink blouse. They are both smiling as they stand in front of a wooden fence out doors.
Photo credit: Courtesy of Alisa Schindler

And I thank you for my sparkling green eyes, athleticism and creativity. That was all you.

Yeah, our relationship was complicated. You were complicated. But I did my best. Because even though you had far more challenges than any human I’ve ever known, I know you did your best too. So, I’m going to put all the ugly stuff away. I’m going to shove it in that dark closet and close the door. And I’m going to let out that guy I remember—Popeye-strong and movie-star beautiful. Someone intelligent and charming. And good. The guy who liked to dole out money and gifts on the sly and would literally give someone the shirt off his back, even if it was his only shirt. Someone close to the corny, romantic epitaph you drilled into me for decades, “He rode the white horse.”

I hope you’re riding him now, Dad, into a beautiful sunset, and you’re hearing “Paradise City,” one of your favorite songs, which I held to your ear just now. You’re a cowboy on a great adventure. Watch out for the lady with the red hair throwing shoes and tell her I love her more.

So maybe this is your obituary. Or eulogy. Or something to do as I sit here holding my breath, watching yours come and go in what seems like 30 second intervals. Even with what I know, I still almost can’t believe that Scaper will not escape this one.

For now, your chest still rises and falls. It doesn’t seem like we have much longer, but hear my voice, feel my touch—I’m here, like I’ve always been. I’m certainly not going to leave you now.

I love you,

Doll Face
_ _ _

*Alisa's father passed away the day after she wrote this. She was grateful to have had the opportunity to read this essay to him.

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Published May 29th, 2018
Two sets of hands clasp one another. One of the hands wears a bracelet.

Who Cares for the Caregiver?