My mom died. This is the story of what happened. The first part of the story is here. My sister and I tried to get a battered Mom into a rehabilitation hospital. All Mom had to do was swallow, prove she was on the mend. She didn't because she wasn't.
The weasels running Mom’s care at the hospital began feeling their oats, thinking we’d have to give in to what they wanted since Mom wasn’t going to a rehabilitation hospital. Barely paying attention to us, they started making plans for when to begin tubing Mom.
Throughout the course of living with multiple sclerosis for decades, Mom always made it clear that her worst nightmare was being kept alive and not living. The weasel doctors didn’t like the idea of anyone dying in their hospital so they planned to ignore the legal Do Not Resuscitate order mom signed and notarized before she was even sick.
I looked at the smug, white-coated weasels and thought beating some sense into them using an IV stand and several applications of the chest paddles sounded mighty sensible.
“It doesn’t matter,” my younger sister Leslie said, her voice soft and sad and barely audible over the sound of my heart raging out of control. It was the tone that jolted me into dropping the IV stand.
I looked at Leslie. She looked at Mom, her eyes full of tears, already dripping down her cheek. My sister, for a long time, was one of the most-sought-after physical therapists in the Dallas-Fort Worth metro area. She was damn good, even after cutting back her practice since moving to Jacksonville several years before. I’m smart. I know a bit about medicine and science. She knew more. A lot more.
“I knew,” she said. “But I ignored it. She can’t swallow on her own.”
“But, what if—“
“Rick, it doesn’t matter,” she said, turning away from Mom and looking back to me. “It never mattered. Without an NG tube she’s going to die of starvation, but you know we can’t do that.”
I nodded. I’d never liked it, but there it was. I wanted to fight against it, keep Mom around just a little while longer. . . Leslie was right.
“Even with all the help in the world, she’s not coming back. Not like she was,” Leslie said. “If the tubes worked and she did come back? Like that? Being a vegetable? It was her nightmare.”
I sat down. My sister and I had never been particularly huggy, but I leaned in and gathered her in my arms.
“Damn,” I said to no one in particular.
Walking to the door, we leaned out and asked the Hospice liaison to come in. Leslie and I walked to Mom’s bed, each on a different side. We each held a separate hand. We stood quietly.
Hospice Offers Love In A Time Without Hope
Hospice is a wonderful invention. It is a place and a service designed to ease the suffering of those about to shuffle off this mortal coil. For those choosing to meet their end at home, hospice offers home visits, caregiver respites and even full-time help. For those who — like Mom — need more looking after, Haven Hospice in Gainesville offered a beautiful, wooded grounds as a last residence. The large, wooden building, full of expansive windows and sitting on manicured ground, sat surrounded by tall pines and oak trees, many of the branches a little bare from the mild Florida winter.
I hated it the minute I saw it.
It was the end. Haven Hospice represented the death of hope. Mom wouldn’t be getting better. She wouldn’t come home. She’d never again take over a dull party and make it a thing talked about for years after.
It was the end. And it was coming soon.
The party started almost as soon as we arrived. Word spread around the Gainesville community pretty quickly about Mom’s situation. It seemed like everyone she knew wanted to come say hello, did so and then stayed to talk to everyone else.
Nodding to Leslie, I slipped out the door and into the quiet hallway outside Mom’s room. I needed a break from the chatter. My ears ringing in the silence, I leaned against the wall.
Dr. Carter, a loud, funny and very caring black woman, her hair done in a tight natural cut close to her head, leaned next to me. Dr Carter tried to make sure Mom wasn’t feeling any pain, but also that she wasn’t so medicated she slept the days away. It was a delicate balancing act and one she seemed to be slipping. All too often, Mom grimaced and thrashed on the bed, her body letting her know she’d overstayed her welcome.
We’d ask for more drugs and more drugs would be given, but we were coming close to where any larger dose would end up being lethal. Hospice was for comfortably seeing folks off, not for pushing them.
“Sounds like a party in there,” she said.
“Of course,” I said. “It’s Mom.”
Dr. Carter nodded her head and looked thoughtful.
“Your mom, she liked parties?”
I smiled, far too many memories flashing into existence for me to make much sense of them. The overwhelming impression was of laughter and sweat and constant motion.
“Oh, yeah,” I said. “She loved parties. Never wanted to leave them.”
Dr. Carter nodded her head again, watching me from over the thick, bright-red frames of her glasses.
“Yeah,” she said. “Sounds like quite a party in there.”
I’ve been called slow on occasion, but I get there eventually.
My heart thumped on the missed beat and my eyes widened. We — Leslie and I and every person we allowed to come into Mom’s room for the floating party — were responsible for keeping Mom around when it was time to go. We were the reason she still was here and in pain.
“Fuck,” I whispered.
“Yeah,” Dr. Carter said. She pushed off the wall and walked away.
Turn Out The Lights. . .
That night, after visiting hours, we hammered out a new policy. We’d still welcome people who wanted to come say goodbye to Mom, but not more than three other people. No loud noises. No party.
Mom needed to know she could — at last — stop fighting. She could give that one inch.
That Friday night, Leslie went to get a Coke from the vending machine while I stayed with Mom. We’d both be going back to Mom’s house for a some sleep, maybe a couple of hours, getting ready for the long day ahead. We couldn’t stand the thought of being away, of letting Mom die alone and lonely.
“Hey, Mom,” I said, holding her left hand cupped in both of mine. I squeezed lightly. I didn’t know if she was awake or even capable of being awake any more, but I had to believe she could hear me, had to believe she wasn’t gone. “You did a damn good job with me and Leslie, you know. I’m not sure I told you that enough. You’ve been teaching us all our lives. Every moment a teachable moment, even if you never said a word. I know you don’t like hearing it, but you were an inspiration. Your courage. Your fight. Your refusal to ever give in. It made you damn annoying at times, but right now, I’m so glad you were like that because it means I got to keep you for longer.
“But you taught me, taught Leslie, too well for us to be selfish. No matter how much we want you to stay, we can’t hold you back. We will miss you, but we will be all right. You taught us to laugh and how to fight, but there’s one last lesson we need from you.
“Teach us how to let go.”
Down by eight, the Florida Gators looked primed to make a comeback against the Kentucky Wildcats. Mom loved basketball and had season tickets to both the men’s and women’s Gator home games. The only thing she hated worse than the Kentucky Wildcats basketball team was seeing her Gators lose to Kentucky.
I’d been talking softly with Mom about the game, my attention only half on the television as the game neared halftime. Something sounded off. I looked around the room, trying to figure out what it was when Mom started breathing again.
“Leslie, Kathy, come here, please.” That my voice sounded calm and I didn’t shriek at all is a testament to either my acting skills or the positive benefits of shock.
Leslie and Kathy had been talking quietly near the room’s closed door, making plans for later that night so we could get something good to eat. Neither of them liked Gator basketball half as much as I did and weren’t even in the same galactic cluster with Mom.
Gentle laughter floated my way as they walked over. Mom kept breathing, but slower, deeper. I looked at them and my mask slipped. The blood fled their faces, leaving behind pale cheeks and wide eyes. They stood close to Mom, without having covered the intervening distance, bending down near Mom’s mouth. She breathed deeper again. I saw Kathy’s and Leslie’s body relax a little.
“No,” I said. “That’s not it. She’s breathing now, but I—“
As if on cue, Mom exhaled. She didn’t inhale for maybe five seconds, then started up again. Her breathing seemed even deeper.
Kathy, a nurse, nodded through fresh tears.
“Cheyne-Stokes breathing,” she said. “Fuck.”
Cheyne-Stokes breathing was something that happened in a lot of near-death patients. Their breathing would get deeper, followed by periods of no breathing, then get shallower with more periods of not breathing. Eventually their breathing wouldn’t restart. No one knows why it happens, only that, when it does, the end is near.
I grabbed Mom’s hand tight in both of mine, my nose burning with the need to sob and wail, tears rolling across the bridge of my nose and off the tip. I looked at Leslie, holding Mom’s right hand. Kathy gently rubbed Mom’s temples, occasionally running her fingers through Mom’s hair.
“It’s okay, Mom,” Leslie said. “We’re here. We’re with you. You’ve done so much for us, for us all. You made sure we were ready for this. You did. Rick and I. . . We’re going to be okay. Pieter and Nico and Sophie are going to be well.”
Leslie nodded at me. I couldn’t open my mouth, couldn’t speak. Couldn’t— No. I was the son of Catherine Jones and if there was one thing I’d learned from her, it was how to talk loudly and clearly.
“We will be all right, Mom,” I said. “Alyse and the boys — Rich, Ben, Rocket — they’ll be all right, too. You’ve got another party to get to and you don’t want to be late.”
“It’s okay, Mom,” Leslie said. “It’s okay to let go now. Stop fighting. Relax.”
“The world. . .,” I said. “The world is a better place for your having been here, Mom.”
We babbled, making sure our voices were heard, that she didn’t go in to that last dark without company.
Mom inhaled, exhaled, inhaled, exhaled. . .
We all held still, listening for breathing, watching her still chest.
I broke first, the sobs crashing through me as I bent over the bed and held the still, already cooling body that used to be my Mom. I don’t know how long we cried, Leslie and I, but eventually we slowed, stopped, sat up.
Kathy wasn’t in the room with us. She must have gone to tell Hospice staff what happened because, after we’d been quiet for a few minutes, the door inched open and one of the wonderful nurses poked her head in.
“May I. . .,” she asked. “I just need to check a few things, if that’s all right?”
“Please,” I said, taking a step further toward the foot of the bed, gently releasing the body’s hand and placing it on the covers. Already the room seemed empty, boring.
I walked around the bed and stood next to Leslie. We watched the nurse check for breathing, heartbeat, any sign of life. There were none, but I could have told her that. What was on the bed. . . That wasn’t Mom. That was just the body that had been fighting her for most of her life. She wasn’t there any more.
I don’t believe in heaven or life after death, but I very much wanted to. I wanted to believe that somewhere under a golden sun, Mom was looking down at two strong, young legs and wondering why she wasn’t dancing yet. I wanted to believe that she was smiling and laughing and jumping and running just for the sheer joy of it all. Because she could. She finally could. I really wanted to believe and, for a while at least, I did.
Bad News Never Gets Easier To Tell
We couldn’t put it off any longer. It was time to tell our respective kids.
We walked past the nurse’s station where two nurses, one male and one female leaned against the counter, gesturing angrily but quietly at a small color television hidden between stacks of paper.
Two steps past the nurse’s station, I twigged to what I’d heard.
I stopped, a giggle forcing itself through my pressed-tight lips. I felt another bubbling up behind that one and a whole lot more not even waiting their turn behind that one. I gasped for breath, but finally managed to tell Leslie.
A deep belly laugh ripped free from the pit of her. Both hands slammed over her mouth, her eyes open wide. Somehow that made it even funnier and more giggling burst through, which set Leslie off again.
My wife, Alyse, and Leslie’s husband, Pieter, both poked their heads out of the family TV room. They walked out, closed the door and headed our way, questions tattooed on their faces.
We wound down, occasional chuckles floating up every five seconds or so.
Alyse and Pieter stood a few feet away, obviously wondering if they needed to call for help.
I stood up straight as my stomach muscles would allow, harrumphing a bit to cover the wince.
Leslie had straightened and now stood next to me. Even then, my body aching from the laughter, I saw the coming tears far too clearly. We’d speak. They’d listen. We’d cry. And then we’d go find the kids and would start all over again.
But that was minutes away.
“What is wrong with you two?” Alyse asked.
“The Gators,” I said. “They lost to Kentucky 68 to 76.”
Leslie and I both chuckled.
I watched as comprehension flashed through Alyse’s face. She got it.
“When. . .?”
“Just after halftime,” I said.
“I am so, so sorry,” she said, collapsing into my arms. I felt her tears, hot and wet, against my neck. The breath of her laughter on my wet neck wrung goosebumps from my skin.
Behind me, I heard Leslie say, “Mom’s gone, Pieter.”
“But, I don’t. . . Oh,” he said, his light Dutch accent rolling the I sound around a bit before letting it go. “She always said she’d rather die than watch Kentucky beat Florida.”
A woman of her word to the end.
I’ll be back. Be good to yourselves.
5 thoughts on “In Requiem: Dying Is Worse”
Awesome I still miss her smile and laughter xo
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This was a beautiful tribute. I’m so sorry.
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