Twist and Shout, I Told My Dying Husband.
Anything to get him to stand.
“But he fell!”
My husband lay on the floor, moaning. He’d fallen from the mattress into the 18-inch space between our bed and his nightstand, a distance exactly as wide as his body. It was 2:06 a.m. Pushing the bed away with my foot to give me enough space to kneel, I’d grabbed my phone and speed-dialed the home hospice agency.
The woman repeated, “When the nurse gets here, she’ll call you back.” She hung up.
I pushed the bed another half-foot away and hit redial.
“How long will that be? I told you, he fell!” My husband’s eyes were closed; his face contorted.
“She’ll call when she gets here. Her shift starts at two-thirty.” Again, she hung up.
My husband groaned. I reached for a pillow and slipped it under his head. He shifted his legs. Good; he could move.
“Morphine?” He nodded. I reached for the bottle, filled the syringe, and pushed it into his mouth. He coughed and seized my arm.
“Okay,” he muttered. “Bathroom.”
“Do it here.” I fumbled for a pad.
“No.” His hand was a vise around my elbow.
“Work with me,” I tried to steady my voice.
Putting my arm behind his waist, avoiding his left shoulder, where his lung cancer had savagely spread. I managed to pull him halfway to a seated position. We struggled forward along the floor, stopping each time he cried out.
“Don’t. Not there. Aaaaa!” I could barely gain traction. He weighed 185 pounds to my 115; the bed was pushed as far away as I could manage. Finally, we came to the archway that opened from the dormer alcove into a wider part of the room. He leaned back, exhausted.
At 2:39, the phone rang. A different voice: the nurse.
“Did you give him morphine?”
“Yes."
“How much?”
“I’m not sure. Three milligrams?”
She sighed. “He’s allowed two point five. Once every four hours.”
“But — He fell!”
The doorbell rang. I ran downstairs. On the street, two ambulances and a firetruck, lights flashing. On my porch and coming up the steps, six men in uniforms. Paramedics. They followed me upstairs.
Two of them crowded in next to the hospital bed he refused to sleep in and the commode he wouldn’t use. The other four lined up in the hall.
“What do you need us to do?”
“Do?” How old was this kid? Had he even finished his training? “Please. Help him up. I think he was trying to get to the bathroom.”
Each of them grabbed an arm.
“Ahaayah, hurts!” he cried.
“Don’t hold him like that. Please.”
They cradled his back as I held the plastic urinal, a washcloth in front of it to protect his dignity. Together, we eased him down onto the hospital bed.
“Anything else, ma’am?” I shook my head.
“We’ll get going, then.” I followed them downstairs, watching as the three vehicles pulled away. I’m glad I shoveled the walk, I thought. Wouldn’t want the paramedics to fall.
Upstairs, he was still groaning softly.
“How are you doing?” I stroked his damp forehead.
A half-smile. “I’ll live.”
His breath grew even, almost as it had been a year ago, when cancer took over his lungs. He settled into sleep.
I tucked blankets around him on the mattress. It was hard as a sheet of plywood. No wonder he slept in our bed. When I picked up my phone to check the time, I realized it was still on speaker.
“They left . . .”
“I heard,” the nurse said. “Have a good evening.”
It was 3:45 a.m.
It wasn’t until March 1st, exactly one year later, that three things from that night clicked into focus. One, the paramedics carried no equipment. Two, they did not check his vital signs or look for injuries. Three, there were six of them.
Six. Like pallbearers.
Two weeks earlier:
After the chemo and immunotherapy did more harm than good; after he spiked fevers of 104 degrees, then shivered so hard his teeth rattled. After the lung cancer that began as a sharp stalactite in his lung had gone to his liver. After there was no longer a way to slow the disease. After we held each other, crying, our last time in the doctor’s office, he went from palliative to hospice care.
It was Valentine’s Day, 2023.
The hospice service sounded ideal. Don’t we all want to spend our last days at home, surrounded by our loved ones?
That was my assumption. It’s the Hallmark-channel version of a good death. My father’s passing, in 1987, was in some respects like that. My mother stayed by his bedside. I heated milk on the stove and brought him tiny cups of a brown syrup that brought no relief, but that was all they allowed back then. One tablespoon every four hours. He watched the clock. Even as he listened to the radio — his beloved Minnesota Twins, on their way to winning their first World Series — he called for his medicine the minute it was time. But attitudes change, and patients no longer endure unimaginable suffering, as he had. Addiction was irrelevant in the context of terminal illness.
The reality was that we had no other choice. Once our HMO stopped palliative care, with its goal of slowing the disease, easing pain, and possibly prolonging life, the patient was turned over to a hospice agency. Quality of Life — QOL, as they called it — was their mandate. I wasn’t sure what comprised QOL, but it sounded admirable. It also, incongruously, brought to mind QVC, the cable-TV shopping channel.
There was no way we could afford private nursing care, either at home or in a facility. The one nonprofit residential hospice in the state cared for patients entirely through donations, at no cost to the family. They had an excellent reputation, but no openings.
We were assigned a social worker, two nurses, a music therapist, and a masseuse. Supplies: adult pull-ups, waterproof pads, wipes, lotions, medicine. The bed and commode, already delivered, took up most of the space in our bedroom, blocking the closet door and the dresser. No matter. I had a five-day supply of sweatshirts, jeans, underwear, socks. I’d rotate them, taking showers when I could.
The nurse moved the papers toward us, tapping her pen at each X. My husband signed first, a long wavy line. I followed with a tight, anxious scribble.
I squeezed his hand. He held mine, then dropped it.
As she was putting on her coat, the case worker paused.
“Almost forgot!” She reached into her bag. “Put this on the refrigerator.”
She handed me a bright yellow laminated card. IN CASE OF EMERGENCY, DO NOT CALL 911. CALL HOSPICE.
“Why?”
“It’s more convenient.”
“In what way?” I was uneasy. Two steps, instead of one. But they had rules; we’d just signed a contract. I programmed the number into my phone.
In addition to the morphine, two other drugs came in liquid form. An easy mnemonic: A, Ativan, agitation. H, Haldol, hallucinations.
“Hallucinations?”
The nurse laughed. Under a bright nimbus of red hair, she beamed.
“Oh, honey, you’ll know. When he gets restless. Sees things that aren’t there.”
When he started to converse with the lamp, I gave him Haldol. When he gasped and struggled for air, Ativan. The charts for recording the amount and times of each dosage were buried in with the rest of the paperwork. I thought of my father. My husband of forty-three years should not have to watch the clock.
It didn’t register that my lack of training in nursing, medication management, or any other kind of basic health care might present a problem. Was I giving him too much? Not enough? How was I supposed to know? I followed the instructions on the bottle.
I worried more about my lack of upper body strength. When he sat on the daybed in our daughter’s room, engrossed in YouTube videos, I’d chance a run to the basement. Afterwards, we worked together. Our right arms locked, hand under elbow, we see-sawed until he could stand. Sometimes it took ten minutes; other times, two hours. I found a pair of five-pound hand weights, and did repetitions until both arms ached equally. I thought I could build enough muscle to be of any use at all.
I flip through the journal I kept during those final months. I barely recognize my handwriting. Some of it is spiky as barbed wire: February 23. The nurse was here, so I went to McDonald’s. Two hamburgers. Large fries. He wanted a chocolate shake but the machine was broken. It’s always broken, I told him. No. Not always, he said. Last time I get McDonald’s for him.
A stab in my heart, reading those words. It was the last time I got McDonald’s for him.
Then there are the furious, Brutalist block letters: FEB. 28. I CAN’T DO THIS. I’M WORTHLESS AT THIS. I AM WORTHLESS! These words are heavily underlined, the black ink slashing through the paper as if tearing through skin. Many of the pages bleed into incoherence, sentences that fall away, chicken scratches. I CAN’T SLEEP I CAN’T SLEEP I CAN’T SLEEP! WHAT WILL HAPPEN IF I SLEEP?
On March 2nd, the day after he fell, I sat at the table with the social worker. In her late twenties, I guessed. Her perfect skin was framed by sleek brown hair. She wore tan slacks and an ivory sweater; chic, an updated version, perhaps, of her mother.
“Look around,” I said. “Our house was built in 1913. He gets up and wanders around. This morning, he came downstairs and made French toast. What can stop him, a baby gate? What if he falls again?”
“Oh, Mary.” She patted my hand. “You could have put the bed down here. He has the commode. Why won’t he use it?”
“Because.” I was not going to sob in front of someone less than half my age who had just said Oh, Mary and patted my hand. “He does not want me to have to empty it.”
“You’re saying you won’t do that for him?” Strike three.
Out. Out of my house. Silently, I showed her the door.
That night, I woke up abruptly. 1:25. Oh, God. Please. Not again. I found him on the toilet, talking to the towel ring.
“Okay. Okay. Now.” He pushed against the seat, leaned against the tank. “Now. Okay.”
“Honey. What’s going on?” He grasped my elbow. Pain shot up my arm. I wrestled it free; he grabbed it again. We see-sawed, uselessly. He was intent on making this work. My arm felt like it was being ripped out of its socket. He leaned back against the tank, closing his eyes.
I sat back, cradling my elbow, wiping away tears. He was on the toilet, that place of the most intimate of bodily functions, because he did not want me to empty the commode. I would have done anything for him. Then it hit me: we could dance. I stood, slid my arms around his waist, and, raggedly, began to sing.
“C’mom c’mon c’mon baby now — come on baby — Twist and shout!”
What dance songs did I know? He hated disco. More to the point, he did not dance.
He lifted his bottom, a little, then sat.
Get up get up get up. I tried another song. The Go-Gos.
“We got the beat. We got the beat. Everybody, get up and dance. Round and round and round, Whoo!”
“Let’s dance.” Bowie, stern. Imperative. “Put on your red shoes and dance the blues. Let’s sway.”
He swayed, a little. Rocked forward. Six inches. Back down, forcefully. “Okay. Now. Okay.” This time, we was talking to the faucet.
“C’mon. C’mon. Please.” Please please me, whoa yeah . . .
Six inches. Eight. Almost, almost —
He sat down.
I leaned against the wall, spent. Ragged. It was 2:55.
I looked around at the sharp edges of the vanity, the cabinet. The hard tile. Leaning forward, I sobbed into his chest.
“I’m so sorry. I can’t do this. I have to get some sleep.”
I made the hardest decision of my life. I left him sitting there, and went back to bed. Ten minutes later, he joined me. We hugged. We slept.
The following day, I got a call. It was the social worker. She’d found him a room.
He lived, alert and sharp, for another five weeks. I am forever grateful to the nurses, staff members, doctors, and volunteers who do God’s work at Our Lady of Peace.
Mini, our 21-year-old cat, remembers. It’s been almost a year. They say animals don’t understand death. That may be true. But she knows that someone she loved is gone, and has not returned. When I walk into the bedroom each night, she’s waiting, on his pillow.
All subscribers will receive my newsletters in your inbox at least once a week, and can read and comment on all posts. If you value my work and have the means to do so,* I offer a monetary option. Doing so has given me, for the first time in my life, the privilege of calling myself a paid writer.
My annual subscriptions are $35. That’s 30% of the regular price, until the end of time. All subscribers have my undying gratitude.
I’m very much aware of the economic inequality in our world, and the challenges we face in our lives. And I don’t know anyone who can afford to subscribe to all the great Substacks out there. I offer a few small extras to paid subscribers; if you’re interested, let me know. I will comp you, no questions asked. Substack now enables DMs. Message me.
One of the saddest stories I have ever read. I took care of my husband at home for a long time and those same experiences were close to mine. The difference was while my husband was a DNR, and on Hospice, the night aid decided to call 911 and never called me. I woke up to a telephone call from the police and the ambulance attendants who were already in my home ready to bring my husband back from dying. He was 91 years old and I was an old social worker who thought I had everything under control. I did not. This is the first time I have written about it.
Ann, I’m deeply honored. I feel so humbled by all of the kindness you’ve shown me. I hope I wrote this with full honesty and openness about the of this type of situation, however wrenching it was. My impulse was to leave out certain things, trying to convince myself they were irrelevant or tangential, when in fact they were the heart of the story. As in, Do I really need to mention that pee thing? And of course I did. Because it answered the question of why he fell out of bed, and led to the emotions behind his refusal to use the commode and hospital bed. And the journal excerpts explained pretty clearly how unhinged I was. Thank you for noticing the craft aspects. I feel overwhelmed, absolutely thrilled that you enjoyed this.