Monette Johnson wants her husband, Chuck, to see another of the wheat harvests that have been so central to his life.
His career centered around grain elevators and wheat sales. Now in hospice care in Lindsborg, Kansas, he misses those golden fields.
So Monette recruited a family friend to Skype with him during harvest so Chuck can enjoy the scenery.
Only, she finds herself hesitating, too, because each Skype call requires the time and help of one of the workers at Bethany Home. In the middle of a pandemic, she worries they have their hands full.
“I don’t know if that would overload the home,” she said. “People that are trying to take care of the residents.”
It’s just one way the coronavirus pandemic tears at the hearts of families trying to navigate how to stay close to loved ones when they can only wave through windows or on smartphone screens.
Even in Kansas, with a per-capita death toll lower than most of the country, nursing homes deal with fresh threats of infection as the economy reopens and people break away from their quarantine habits. More than half of the state’s coronavirus fatalities have links to long-term care.
Monette’s husband of 55 years has late-stage Parkinson’s disease and related dementia. In another world, she could have sat with Chuck and guided him through a Skype session herself. The new COVID-19 reality has blocked her from setting foot in his room since March.
Still, she supports efforts to protect nursing homes from COVID-19.
“I can’t begrudge that,” she said. “I just can’t begrudge that they’re doing everything they can to keep it out.”
When nursing facilities across the country locked down, Bethany pivoted to find new ways for people to connect.
Workers helped families set up Skype on their computers. They allowed care packages, but only after they were first quarantined and then sanitized.
Stephanie Ferguson, an experienced nursing and medication aide at the Lindsborg home, saw it first-hand. Some of Bethany Home’s 90 residents started to get worse when visits stopped.
“That lack of contact just kind of made them give up,” she said. “Like they just felt they had nothing to live for.”
Everything became a balancing act between two real dangers: the risk of coronavirus versus the isolation that threatened residents’ health in another way.
Nursing homes have to make their best calls based on reams of federal guidance that changes swiftly and doesn’t always translate well to the daily life details they need to address.
Bethany halted visits from the beloved therapy dog, an Australian Shepherd named Milo, for fear its fur could pick up COVID-19 and carry it from room to room.
The home started giving employees free lunches in the cafeteria so they could eat without bringing in outside food.
Briefly, it tried outdoor visits. A single resident at a time would sit on a patio, while family members stood 10 or 12 feet away. Then Bethany put that on hold until regulators make clear whether it’s approved.
Yet the facility, affiliated with the Evangelical Lutheran Church, tried to keep as many activities for residents as possible. Bingo became hallway bingo, with people sitting in their doorways.
Rides through town on the “surrey,” a large trailer with a canopy, continued, but carried just a few carefully spaced residents instead of 15 or 20.
None of that can replace the hugs of family members. And the longer the separation continues, the more it hurts staff to see.
“We’ve had people that have passed away,” Ferguson said. “Or had major milestones — birthdays or anniversaries.”
When someone is dying, just a few family members can enter the nursing home to spend time at their bedside. The visitors must stay in the rooms to prevent contamination — no stopping at the cafeteria to get food or wandering to stretch their legs.
“So it’s ... I can’t even imagine being in that position,” Ferguson said.
Nursing homes have long struggled with understaffing, and COVID-19 only made that worse.
But Bethany Home had an advantage. Shortly before the pandemic, it began hiring extra workers to help nursing staff with basic tasks.
When the pandemic hit, students and displaced workers showed up, and the program quickly grew to more than 20. The extra hands made lighter work of sanitizing handrails and doorknobs every hour, handling Facetime calls for families and playing board games with residents.
Whitney Johnson (no relation to Chuck and Monette) signed up when her senior year classes at the local high school abruptly went online. She planned to become a music teacher someday, but now she feels less sure.
“I've always had this connection with nursing homes,” said Whitney, whose mother manages physical therapy at Bethany. “I kind of told myself, ‘I’m not going to get attached to nursing homes like my mom.’ And then I did. I'm so attached.”
She describes her job as a mix of infection control and social support. She feels like the “nursing home grandkid” there to cheer people. She smiles — a lot — beneath her face mask, unsure if the residents can tell.
In Lindsborg and across Kansas, restaurants have reopened. Family cookouts are back.
But human contact brings the risk of coronavirus, and people who work in nursing homes fear a false sense of security will help the germ spread.
Outside of their jobs, nursing home staff live in communities full of people who see far less reason to mask up.
“The stress of knowing that we have to keep this virus out of our buildings has just been incredible,” Bethany Home CEO Kris Erickson said. “You look at the world in a whole new way.”
“You head to the store and you sit in the parking lot and count the people who (aren’t) wearing masks into the store. … I’ve turned around myself and decided I don’t need that item as much as I thought I did.”
Knowing the pressure that staff faces, Bethany gave $1 per hour pay bumps — temporary increases funded with federal stimulus money. The nursing home increased paid leave by two weeks, so anyone with symptoms could stay home.
Monette Johnson feels the pressure, too.
With her husband receiving hospice care, she knows Bethany Home could call her to his side. She wants to be healthy for Chuck, and able to go.
“There are times I don’t do things because I think, ‘I’m not going to take that chance’” she said.
From the very start of the pandemic, Bethany Home worked with less-than-ideal protective gear.
The global rush on face masks and gowns pushed up prices and drained supply lines. Across the country, nursing homes trying to snap up equipment lost out to bigger fish.
So Bethany bought rain ponchos off Amazon in place of disposable gowns. A local refinery worker dropped off scores of N95 masks. People in the area sewed hundreds of fabric masks.
These cloth coverings became the norm here and at nursing homes across the country. Bethany launders them in-house and places them in a tub in the entryway, for workers to don each day after taking their temperature and passing a screening.
The Centers for Disease Control and Prevention doesn’t count those masks as personal protective gear, but rather a "last resort."
Many nursing homes still don't have what they need. As recently as last month, Kaiser Health News reported that one-fifth of the nation’s nursing homes didn’t have enough professional-grade gear on hand to get through a single week. Even shipments of supplies from the federal government sometimes contain substandard products.
So facilities use what professional gear they have sparingly — holding onto it for patients with COVID-19 symptoms, or for other dangerous infections nursing homes battle, such as C. diff.
Maridene Lundstrom, a former piano teacher, has lived at Bethany Home for four years. Before the pandemic, she visited her family down the street for cherished Sunday dinners.
“My daughter-in-law always fixed something very special,” Lundstrom said.
Those occasions have been replaced with window visits and phone calls. Families held a few parades around the nursing home. Her grandchildren and great-grandchildren drove past with brightly colored signs and balloons while she watched from the sidewalk.
For months, everybody entering her room has peered at her over a mask. So she peeks at their name tags or recognizes them by voice.
“There are times I have been discouraged, but I try not to be discouraged a whole day,” she said. “Maybe a half a day. And then I think, ‘Now we’re going to do something exciting this afternoon.’”
Bethany Home, she said, has shielded her from the stress of the pandemic. Some of her favorite activities, like practicing chimes with other residents to perform at church services, had to stop. But she can sit in her doorway, hear the service on a hallway loudspeaker and sing along with the hymns.
“I can’t really stress how important music is to me,” she said. “I love to go to the piano and play just what I want.”
It’s a piano in the dining area. Letting people leave their rooms for moments like this is another way the nursing home tries to balance the isolation meant to keep people safe with everyone’s need for quality of life.
“Not necessarily beautiful classical music — my eyesight is not the best,” Lundstrom said. “I love to just play with the keys … and come up with a little melody that I like.”
Celia Llopis-Jepsen reports on consumer health and education for the Kansas News Service. You can follow her on Twitter @celia_LJ or email her at celia (at) kcur (dot) org.
The Kansas News Service is a collaboration of KCUR, Kansas Public Radio, KMUW and High Plains Public Radio focused on health, the social determinants of health and their connection to public policy. Kansas News Service stories and photos may be republished by news media at no cost with proper attribution and a link to ksnewsservice.org.