Bearing Witness

The End

The End is a series about end-of-life issues.

As excruciating as it can be to bear witness when a loved one is at the end of life, I highly recommend it to everyone given the chance. The things I’ve learned from being in the room with souls whose journeys happen to be winding down are nothing less than sublime gifts given by the person on the bed, separated from me by a thin sheet and a trillion words, most unspoken. At this stage, sometimes there’s a suction tube. And sometimes there truly are no words. There are other ways to listen, though.

It’s sacred business, watching on the periphery as someone is dying, knowing that person may soon find answers I can only dream about. Being in that room is about being inches away from someone’s intensely personal, unique, painful, awful, scary, gorgeous scenery. Just being there without judgment or agenda; just being there with a shocking amount of love and compassion.

I learned a lot about that in my years working in New York City’s pediatric hospitals with the Big Apple Circus Clown Care program, which sends professional clowns to 14 children’s hospitals across the country. On my first day of walking the hospital beat with my partner, both of us dressed as clowns in white “doctor” coats bulging with hospital-approved magic toys, hearts at the ready to get goofy, we were pulled into a room by a wet-eyed mom, asking fervently for a visit for her little girl.

“She’s leaving us soon. Can you sing to her?” Can we SING to her? Your daughter is dying and you want complete strangers to come into her room and sing to her? No point mentioning I’m brand new at this, the training was great but I’m just sorting out my clown character, it’s all too new, what if I mess up, oh-my-God-your-baby-is-going-to-die and you want me to sing to her.

It was “You Are My Sunshine.” We sang it quietly and somehow steadily. Her folks wept into her, whispering their promises to keep her alive in their hearts, smiling through rivers of tears so she could see they would be O.K. I remember a gentle sweetness in her little face, her essence. I remember no bitter rage or fear. The room was practically hovering in dedicated energy and love fully focused on that little person under the sheet. I remember closing my eyes and tossing each note like a ribbon for this child and her sad, sad folks. My partner and I watched her breathe her last breaths and tiptoed out and cried and cried.

Photo
Credit Getty Images

I spent a lot of time in hospitals with that program, but the view is different from the other side of the bed. In a recent blink, my father went from a diagnosis of late-stage melanoma in a big Texas hospital to final resting place in the form of nursing home with a side of hospice.

Dying is messy and smelly. Even well-meaning people whose job entails keeping a patient pain-free can cause pain, even when it’s palliative care. Sometimes it just can’t be helped. Sometimes it can. I don’t expect you to know a lovely, cherished man lies here. But if you work in a place where people go to die, I do expect you to act as if you know it.

On our way into the nursing home at the end of my father’s life, Dad let me show him the waxy moon as I braked his gurney in the parking lot, his last chance to breathe in the great outdoors. Goodnight, moon. Once inside, the world turned inside out, and I learned a few more things.

We had to adapt to the rhythms of the place, which included adrenaline rushes in the dark as shift-changing aides would burst through the door, loudly declaring “Good morning” a minute past midnight, to check vitals or to refill his water with the loudest ice on earth though he hadn’t had a sip in days.

There was one nurse for two dozen patients, all needing something rather immediately. Dad needed a “drawsheet” to keep his body from slipping in the bed, but somehow there were no clean sheets anywhere in the entire clean and lovely joint. Something about the laundry not being delivered yet again that made my eyes glaze over in helpless defeat.

The hospital where he had been before that earned praise for hiring gifted nurses who cared deeply for the extra-wobbly. So when we were there I was able to focus on the kind man who raised me, and share our quickly dwindling time, carving out moments of bliss in between longer moments of watching a body shut down. He allowed me to bring hot coffee to his parched lips at 4 in the morning, and break a stale bear claw as communion, pretending we were at his cherished Starbucks and mouthing, “Delicious.” He held my hand so hard I thought it would break and stared into my eyes, but when I asked if he was sad, he’d say: “No. Happy.” His eyes tracked me when I found an old clown nose in my bag and put it on without a word and I heard his laughter though he made no sound. We stared at each other; I knew he was saying he was proud of me, because he used to tell me so, and that’s what his eyes would look like then.

He’d tell me he’s lived a good life and has no regrets, he’s ready to be with Mom. He promised to continue to pray for us. Then he’d think I was my mom and thank me for marrying him. And call me by my brother’s name. And my sister’s name. And his brothers’ names. And other names. It was sweet.

I had to say my goodbyes to Dad and return to my children in Connecticut, so I wasn’t there at the very end. What I witnessed was not easy in the least, but I wouldn’t take a second of it back because it truly was a remarkable experience, and I got to take care of a remarkable man. I listened to his every changing breath, watched his body slowly lose the resolve, felt his fear and his great concern and total love. I offered tissues at every cough and rubbed his head until it was a copper penny. When he wasn’t speaking for a couple of days, my siblings and I started the Lord’s Prayer and the words suddenly poured from Dad’s mouth. I fought the need to control things and assured him there was nothing to fear and nothing to lose and everything to gain, and I believed every word and the whole thing was devastating. But it was beautiful, too. I miss him.

Whether a newborn, a toddler or teenager, a middle-aged or thoroughly wrinkled soul, when they are too sick to get out of bed and their breath is ragged and their hands are starting to curl into their palms, they are the sacred vulnerable and it is up to the ones standing to take good care. If you have a habit of being surprised by life’s mysteries, if you’re drawn to the myriad layers of human experience, if you feel compelled, called, and really, really want to be there as someone is dying, go all in. Because you will carry with you the imprint of those final weeks or days or moments, someone else’s breaths, and you’ll remember the gifts, eventually.

Jo McElroy Senecal is a counselor and family liaison for Paul Newman’s Hole in the Wall Gang Camp and SeriousFun.