Traveling the loneliest road: A story of medical care in rural America

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As basic medical care disappears from rural America, a husband and wife are forced apart after 63 years.

* * *

BROKEN BOW, Nebraska

She had been waiting more than a week for the black ice to melt and the farm roads to clear, but Marlene Kennedy, 84, was unwilling to wait any longer. She changed into snow boots, tucked her heart medication into her purse, and stepped out to the porch. She held onto a railing with one hand and to her daughter with the other, inching down the frozen walkway toward her garage, trying not to think about her husband's slip and fall, which had shattered his hip and eventually forced him into a nursing home located more than an hour away.

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It had been 10 days since her last visit to see him, the longest they'd been apart in 63 years of marriage. He had Parkinson's disease, which made it impossible for him to talk on the phone. She'd called the nursing staff for daily updates, and they said her husband seemed quiet, and he was losing his appetite.

"Why is it still so bad out here?" Marlene asked. Her feet skidded on the ice, and she wrapped her arm around her daughter's shoulder as they moved closer to the car.

"Maybe it would be easier in a few hours, once the sun warms up," said her daughter, Deb Kennedy, 51.

"No. I'm at the end of my rope already," Marlene said. "Poor Earl's probably wondering if we left him alone down there."

In the first months after her husband's fall, Marlene had helped Earl Kennedy move into a nursing home three minutes from their house in Broken Bow, a town of 3,000, close enough that she could visit him twice a day. But then that nursing home went bankrupt and closed in May, one of more than 260 rural nursing facilities across the country to shut down for financial reasons in the past three years, sending another family on a desperate search for the basic medical care that is disappearing from rural America.

Marlene tried to get Earl into the only other nursing home in Broken Bow, but that facility had managed to stay solvent in part by limiting the number of residents on Medicaid, as Earl was, because the federal program pays nursing homes in Nebraska about $40 less per day than the cost of providing care. The nursing homes in Ainsworth and Minden had already closed, and the one located next to a grain elevator in Callaway was running a waiting list. The best option Marlene could find was a shared room in the town of Cozad, more than 50 miles away down remote two-lane roads, and Marlene had been making the trip back and forth several times each week ever since.

This time, Deb had offered to drive her, and they rode away from the single-story house where Marlene and Earl had raised four children, and then past the grocery store where he had stocked shelves for 47 years. They continued beyond the feedlots on the outskirts of town, dense with cattle covering the hillsides. The road narrowed through a maze of cornfields. Frozen snow crunched beneath the tires and wind beat against the windows as they drove for miles without seeing another car.

"There's a dip coming up here," Marlene told her daughter, as the road climbed over a frozen creek.

"Where? I don't see it."

"Believe me. It's there," she said. "I've done this enough to know."

She and Earl had rarely traveled outside of Nebraska, and they'd never been on an airplane. Many of their trips together in recent years had been medical trips, the escalating cost of a life spent in rural America, which in the past decade has lost at least 250 maternity wards, 115 hospitals, 3,500 primary care doctors, 2,000 medical specialists and hundreds of nursing homes. Marlene and Earl had traveled together to Lincoln for a heart operation, Kearney for an ankle, Grand Island for a hip, Omaha for corneal transplants, and then finally to Cozad in the back of a nursing home transport van for what Marlene feared would be Earl's final trip. He was almost 88, and he could no longer walk or eat solid foods. Marlene had already paid for their adjacent cemetery plots in Broken Bow, where Earl had spent his entire adult life, but there was no place left in town where he could live safely until he died.

Deb slowed to pass a tractor. Marlene waved to the driver and then stared out the window, where rolling hills went on for miles. The prairie was empty except for hay bales and a few pieces of farming equipment left out in the snow.

"You all right?" Deb asked. "You seem quiet."

"This drive always feels long," Marlene said. "You spend your whole life tied up right next to somebody, and then you don't get to be there for the hardest parts. It doesn't seem natural."

"You didn't have a choice," Deb said.

"No, but that doesn't stop me from worrying about him," Marlene said, because that was what she'd been doing for much of the past week and a half as she waited for the weather to improve. She'd worried that Earl's bed was pressed too close to the window on subfreezing nights, and that the khakis she'd bought for him to wear weren't thick enough, and that he was losing too much weight to keep himself warm, and that if he wasn't warm he wouldn't be able to sleep. She'd worried about what he might be doing if he wasn't sleeping, since his eyesight made it difficult for him to read or watch TV or do much of anything except move back and forth from his bed to his wheelchair, in which case 10 days might have felt to him like forever. She'd worried he felt confused by her absence, or upset, or scared, or even abandoned.

"I'd be with him every day if I could," Marlene said. "He knows that, right?"

"Of course. He knows we all want to be there," Deb said. She drove by a large grain elevator and turned into the town of Cozad, parking in front of a small nursing home. She opened the passenger door and reached down to help her mother out of the car. "I bet you'll feel better once you get a chance to visit with him," she said.

"I don't like being a visitor," Marlene said. "I'm not a visitor to him."

* * *

They walked down a tiled hallway with fluorescent lighting to a small room with an American flag taped beside the door. Marlene stepped into the front half of the room, which for the past 15 years had belonged to Earl's new roommate, Oscar. He waved from his wheelchair, and then Marlene pulled back a curtain to reveal the back half of the room, where Earl was in the same position as she'd last seen him, 10 days earlier. He sat in his wheelchair with his body bent over to the right, wearing a baseball cap on his head and a kerchief to protect his shirt. He faced a TV that wasn't on and a window with a view of snow-covered recycling bins. Marlene put her hand on his shoulder and leaned down to kiss his forehead.

"I missed you, Earl," she said. "I missed you so bad I couldn't stand it."

He smiled at her and nodded. He reached over to his bed and picked up a holiday card he'd received from one of their great-grandchildren. He'd shown it to Marlene on her last visit, and now he handed it to her again.

"Isn't that something," she said, rubbing his back, pulling over a chair until it was pressed right up against his. She set the card down and rested her head against his shoulder.

"I missed you, Earl," she said again. "Did you miss me?"

"Well," he said. His lips tried to form more words, but they wouldn't come. He'd been working with a speech therapist to fight back the advance of Parkinson's and maintain his ability to eat, swallow and speak, but lately Marlene thought he had fewer good days than bad. She leaned in and tried to read his lips, smiling at him, waiting for him to talk as she rubbed his shoulders. His mind was still sharp, and some days his sentences came more easily as time went along. She believed the kind and respectful thing to do was to stay patient and wait through the silence, until after a few moments of watching Earl struggle, she decided the kinder thing was to break it.

"I wanted to come just about every day, but this weather had other ideas," she told him. "You missed me, though, Earl. Didn't you?"

"Well," he said again. He smiled and reached over to wrap his arm around her shoulder.

"Yeah, I knew it," she said. "You missed me. And what all did I miss here?"

"Well, the usual," he said, beginning to find his voice. He pointed out toward the weekly schedule that was posted on the wall: a resident social hour at 8 a.m., three pureed meals in the cafeteria each day, bingo on Wednesdays and Fridays, Bible study on Tuesdays, "Wheel of Fortune" in the community room each night. Five residents had died in the past few weeks, and each time the nursing staff had made up the bed with a red rose and a copy of the same poem on the pillow: "I am home in heaven, dear ones; Oh so happy and so bright!"

"I suppose you didn't miss much," Earl said. "Life in a rest home. We rest."

Marlene laughed. "You never were much of a complainer," she said.

"No," he said. "I guess not."

They sat together holding hands as Marlene straightened Earl's hat and smoothed the wrinkles out of his khakis. Sometimes during their visits, she took him into the cafeteria to play board games or read to him aloud from Philippians, but they spent most of their time together in silence.

"I like sitting with you like this," Earl said.

His half of the room was barely large enough to fit a bed, a chair, and a handful of mementos. There were photos on the wall of his friends, his grandchildren, and his great-grandchildren, many of whom lived near Broken Bow and were too far away from Cozad to make regular visits. There was a prayer book from the country church where he'd met Marlene in 1954, and a few awards from the grocery store where he'd started out making $60 a week and then stayed on for nearly five decades.

"A life lived right," read one of those employee plaques, which the store had given to him to commemorate his retirement at age 76, and Earl believed that declaration to be true. He'd raised four successful children, taught Sunday school, worked at the store six days each week, and come home most afternoons to eat lunch with Marlene. Their family had never earned more than $35,000 in a year, but somehow they had managed to send the children to college, stay out of debt, pay off their house, and even build up some savings - most of which had vanished in less than two years to pay for Earl's nursing care in Broken Bow.

After that he was forced to rely on Medicaid, which meant that like most rural Nebraskans, he was dependent on a nursing system that was collapsing and scattering the poorest residents across the plains. Some of his friends from the home in Broken Bow had ended up in Omaha, Wyoming or North Dakota, and Earl had been moved out of a town where he knew almost everybody to a place where he knew almost nobody, and where the one constant was Marlene.

"It's getting to be that time," she said, as she looked out the window. They'd been sitting together for a few hours. The sun dipped down toward the cornfields, and the wind picked up and started whipping snow off the ground. Soon it would be dusk, when the roads started to refreeze and deer began to dart across the prairie.

"You should go," Earl said. "I'm okay."

"Another minute," she said. She held his hand, and she thought she could feel it beginning to shake. She'd noticed that sometimes his Parkinson's symptoms seemed to worsen at the end of their visits. "I'll be back soon," she said. "The weather coming up looks pretty good."

"When you can," he said. "I'll be all right."

"Soon," she said again.

"Well," he said. He patted her arm. He tried to say something more, but his hands were shaking harder now, and the words weren't coming. Marlene leaned in and waited, watching his lips. "I'm okay," he said again. "It's okay," he said, until finally Marlene squeezed his hand, forced herself up, and started walking out toward the car.

* * *

Earl watched out the window as the sky turned dark. His room was quiet, but in the hallway he could hear the sounds of oxygen machines and beeping call lights. Nurses wheeled residents into the cafeteria for bingo, and the food staff prepared creamy potatoes for dinner.

By all appearances, the nursing home was a place of routine and stability, but in fact it was facing the same financial pressures that had shut down 31 nursing homes in Nebraska in the past several years. A few months before, it had come within days of being the 32nd, after failing to meet payroll and making plans to transfer all 65 residents. The facility had been rescued out of bankruptcy at the last moment by a new ownership group from New York, and now the staff was trying help the nursing home save money however it could.

Lately, one strategy involved making trips to the shuttered nursing home in Broken Bow to salvage whatever supplies were left inside.

"I'll be back in a few hours," said Kiley Goff, the head administrator in Cozad, as she left a staff meeting and walked out to her truck to make her fourth trip to Broken Bow in the past month. Her bosses had purchased the building there, given her a key and allowed her to take whatever she needed for the nursing home in Cozad, which turned out to be almost everything. Their facility was almost 70 years old, and some of the rooms still had hand-crank medical beds. For one of her trips to Broken Bow, she'd rented a U-Haul and hired teenagers on the local high school wrestling team to help her load it with a dozen electric beds, a few couches, a washer and dryer, wooden doors, a bathtub, a fireplace, wall art and hundreds of pounds of linens.

This time she was hoping to find water pitchers, dishware and holiday decorations. "Any little thing we find is something we don't have to buy," she said.

She was a trained speech pathologist who had recently switched to management, and she'd spent the past year learning the difficult math of nursing home finances. The Medicaid reimbursement rate in Nebraska and most other states had stayed relatively flat for the past several years, even as medical costs rose by more than 20 percent. Her nursing home in Cozad received $152 per day for each Medicaid resident, far short of the $200-per-day cost of providing care. To make up for that loss, nursing homes typically charged much higher rates for people paying with their own money, a strategy that worked in urban areas where about half of residents could afford to pay out of pocket. But in rural Nebraska, only 35 percent of nursing home residents had money to pay for their own care, and in Cozad, it was less than 20 percent.

The result was that urban nursing homes had been able to remain relatively stable even as care disappeared from disproportionately older, poorer and rural areas of the country, where an elderly population that was projected to double in size over the next 20 years would have fewer places to go.

Goff drove by the feedlots on the edge of Broken Bow, stopped at the railroads tracks for a passing coal train, and then parked at a low-slung building across from a hardware store. Snow piled against the doorway and a broken-down medical van sat out front. She pushed open the front door and light streamed into the building. She could see down a long hallway, where medical lights flashed red against the walls and a broken fire alarm kept going off.

The nursing home had emptied out within just a few weeks in May once the closing was announced, as 46 residents and 65 staff members scrambled for places to go, but everything else had remained inside. There were wheelchairs in the front lobby, Bibles left open in the chapel, and plastic Easter eggs scattered in the hall. Goff grabbed an empty plastic bin from the front closet and started walking through the facility, opening closets and drawers to look for holiday decorations she could use in Cozad.

She found a stuffed Santa and some holiday lights in a closet. She went through the physical therapy room, the beauty parlor, and then into the secure memory care wing. "A Safe and Happy Forever Home," read a framed cross-stitch near the entrance to what had once been the area for residents with Alzheimer's or dementia, who tended to thrive on consistency, and who had since been uprooted to places all over Nebraska without understanding where or why.

Goff found a small Christmas tree in a closet and a package of unopened tablecloths in the cafeteria. Her phone rang, and she set down her bin to answer.

It was one of her staff members in Cozad, wanting to know when she'd be back. "I'm almost done," she said. "It always feels weird in here."

She pressed the phone to her ear, carried the bin of decorations out to her truck, and locked the nursing home's front door.

"There's still so much good stuff wasting away in here," she told her employee. "We'll need to come back with the trailer."

* * *

A three-minute drive away, in a house at the center of Broken Bow, Marlene was sorting through her own belongings, trying to compile the story of her last 63 years with Earl, just in case. She wanted to pick out photos for his funeral program. She wanted to be prepared with a eulogy. She needed to call their bank and switch all of their joint accounts into her name.

"You're smart to prepare early," a banker was telling her now, on the phone. "This way you can do some of it together."

"Actually, he's not here," she said. "It's just me."

The walls of her living room were decorated with photos of the grandchildren whom Marlene sometimes felt guilty visiting without Earl, and mementos from the church she didn't like attending without him, and plaques from the grocery store where she still sometimes expected to see him when she shopped. One picture showed Earl at his retirement celebration, when some former co-workers came back from out of state and the store offered free cake to the entire town. A few hundred people had come through the store that day to say goodbye. "A small town turns out to support one of its own," read one local news story about that day, but on this day, Marlene was thinking about the things Broken Bow could no longer support, and the closed nursing home, and all of the people Earl was no longer able to see. Aside from their family, she thought he'd had two visitors in the past six months.

She turned on the TV to check the weather report. She put her heart medication into her purse. She inched down the driveway and into their 20-year-old car.

Earl had usually been the one who drove during their marriage, but Marlene had put 14,000 miles on the car in the past several months. She drove out of Broken Bow and past the feedlots on the edge of town. She turned through the cornfields. She went over the frozen creek. She slowed for the dip. She waved to a tractor. She went by the grain elevator. She looked out the front windshield at the rolling prairie and counted off the long miles, until she was parked in front of the nursing home and walking into Earl's room.

She saw him looking out the window and waiting in his chair, where she'd left him a few days earlier and would soon have to leave him again.

"I'm here," she said, putting her arm on his shoulder. "I'll stay for as long as I can."

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