Heartbreaking Staff, family watch, wait as COVID-19 takes its toll
At 10:39 p.m. Dec. 1, Marilynn Cosme of Renfrew watched as the toughest woman she ever knew died from COVID-19 at the age of 64.
Cosme's mother, Barb Clifford, also a resident of Renfrew, received confirmation Oct. 30 that she tested positive for COVID-19.
“We all found out within the same 24 hours,” Cosme said. “My dad had it, my mom had it and I had it.”
Cosme said her mother grew sick quickly, experiencing shortness of breath, vomiting and diarrhea.
“She was panting,” she said. “She wasn't able to get any air.”
Clifford was taken to Butler Memorial Hospital on Nov. 1, where she would fight the disease for 31 days.
Cosme said at first she wasn't worried about the emergency room visit. She thought doctors would just give her mom some medication, but instead they gave her oxygen and a bed. “When they said they were keeping her,” Cosme said, “I guess reality set in that she wasn't going in just to get some medication.”
After oxygen, doctors placed Clifford on a continuous positive airway pressure (CPAP) therapy machine, but 16 days later, she was placed on a ventilator.
When Cosme got the call with that information, she rushed to the hospital.
“I sat in the parking lot for 3½ hours, crying because I couldn't go in,” she said.
Strain and support
The difficulty of these dynamics is not lost on the health professionals working to keep COVID-19 patients alive or comfort those who are dying.
“When you ask most people: Where would you like to die?” said Dr. John Love, director of infectious disease at Butler Health System, “most people say they want to die in their homes, surrounded by their family.”
Forced to seek advanced life-sustaining treatment, COVID-19 patients also must suffer separation from their loved ones.
Love said the reason for such restrictions on visitation is one purely based on safety. He said too many visitors in the COVID-19 ward could spread the virus further, making others sick and putting another person at risk, potentially for some ending up in an intensive care bed.
The lack of access for loved ones creates new responsibilities for staff and administrators at the hospital. They work harder to keep families informed and in touch with their loved ones.Dr. Dillon Stein, medical director for BHS palliative care, works with critically ill patients, some of whom have COVID-19.“We try to bridge the gap,” Stein said. “We're trying to make sure we're caring for people in a complete way.”Stein said many nurses are working above and beyond their job description. He said they provide anything from blankets and activities to simple chats.“They're the ones going into these rooms to provide FaceTiming with the patients and their families,” he said. “The amount of care and compassion they're giving pales to anything I could do on my own.”The need to inform families of their loved ones' progress is even more dire when the patient is placed on a ventilator, according to Stein.Many who are forced to use ventilators do not recover.“That's when, medically, we really start thinking and preparing,” he said. “For those people who may die here in the hospital, we're here to make sure they're comfortable along the way.”End of lifeEven for end-of-life situations, visitation is limited, but possible.“We are trying to find a safe middle of the road that will allow some contact in person,” Love said. “We also have to be very protective of our staff and their ability to stay healthy and keep caring for people in that building.”On Dec. 1, the day her mother died, Cosme entered the hospital, signed a waiver and put on specialized clothing and personal protective equipment, all to see her mother one last time.“My dad and I walked into the room first,” Cosme said. “You probably could have pushed us over with a feather. The hardest thing to get out of my mind is the way she looked.”In the preceding five to seven days, Clifford had gone into multi-organ failure because of the lack of oxygen. Cosme asked the doctors what her mother's life would be like if the ventilator and dialysis worked. They told her that Clifford likely would be in a wheelchair and need dialysis for the rest of her life.While on ventilators, patients are heavily sedated to keep them from disturbing the numerous tubes and machines helping to keep them alive.“They said she could hear us,” Cosme said. “I was talking to her by her head. I was telling her she would be OK, and she dropped a tear.“I'm her only daughter. I'm her oldest, and she was my best friend. We did everything together.”Cosme said her brother showed up to see their mother too.“And she dropped a tear on the side he was at,” she said. “So, we know she could hear us. She just couldn't respond.”EmotionsAccording to Love, death isdifficult for all involved, and COVID-19 has brought more death to Butler Memorial Hospital.“I can tell you our hospital death rates were multiple times higher,” he said of December and January.Death tolls, percent positivity, incidence rates and hospitalizations are gathered to provide data that tracks the big picture. But that focus does not insulate the medical staff from the emotional impact of a patient's death.“The heartache with this is much stronger because of the emotional ties and supports we would usually have for the patients aren't there in the same way, and it sucks,” Love said.
Instead, nurses hold onto electronic tablets for families. When the screen is put down, many nurses try to extend the comfort to patients through kind words, holding their hands and keeping their spirits up.Stein said Butler Memorial is a community hospital— many of the patients are neighbors, friends or family.“The closeness of the community takes an extra level of emotional toll on people,” he said. “It's one thing to take care of somebody. It's another to take care of someone you know and are close to.”For Cosme, those emotions were difficult to navigate as her family came to terms with her mother's situation. She said she knew her mother never would want to live her life dependent on medication and machines to survive.“We decided to take her off the machine,” said Cosme, who was proud of her mother for fighting as long as she did. “People don't last 31 days fighting COVID-19.”About 30 minutes after being removed from the ventilator — at 10:39 p.m. Dec. 1 — Barb Clifford died.Never forgottenCosme said her mother was a strong woman with a fighting spirit.For years, Clifford cleaned houses. Many of her clients were elderly.“She charged them pennies,” Cosme said. “She'd be there for hours, cleaning closets and scrubbing toilets.”Clifford was active in her church. She loved to teach Bible study to children, her daughter recalled.She said her mother was inviting and personable. Once, working as a waitress, Clifford found herself serving some regular customers who were deaf. She paid to study sign language at Butler County Community College, so she could better communicate with them.“She put her best self out there, all the time,” Cosme said. “When she hugged you, you're family. You weren't somebody she just met.”Cosme said her mother was an incredible grandmother.“My mother spent every day with my daughter for the last seven years,” Cosme said. “She was an amazing steward on this Earth, on how to love people.”Cosme said she will miss the support that her mother offered her and the unrelenting love that showed itself in many ways. She said no matter the circumstance, she would come in the middle of the day or night to sit with you, hold your hand or drive you home.Cosme said she knew her mother would die one day, but not like this. This was different from anything she ever imagined.“The face of COVID-19 is quite raw for us,” she said.
