Adenovirus outbreak: Wanaque nursing home workers speak of grief, stress

As she stands in the nursing home's hallway, donning her newly required protective attire — mask, gown, gloves — she looks into a room and for a moment sees two of her patients: the one who now awaits her ministrations, and the one she lost. 

This is how it is these days for some workers at the Wanaque Center for Nursing and Rehabilitation, the site of an adenovirus outbreak that has claimed the lives of 11 young, severely disabled patients. 

“It’s a roller coaster,” the nursing-home worker said in an interview with NorthJersey.com and the USA TODAY Network New Jersey. "You’re imagining that kid who was there, and then a click of the emotions, and now you have to be 100 percent ready for the new one.”  

Yet the tension makes a difficult job even harder. If a patient develops a slight fever, she said, “I’m like, ‘Oh my God, is it another one?'” Another infection. She has to take time, stay focused at the bedside “to make sure he’s OK, because I don’t want another one. I can’t lose another one.”   

Stunned by the deaths of so many children who were in their care, workers at the Wanaque center must cope with their grief while facing intense pressure from government regulators and management at the nursing home to end the virus' deadly spread.   

One of the nation’s worst recorded adenovirus outbreaks has sickened 35 medically fragile children at the nursing home. It has also taken a toll on the staff, who in some cases are afraid the blame will fall on them.  

“I feel like I lost one — no, many, many — of my own family, because we are with the patients eight hours a day,” one worker said. “It never stops. You’re like grieving the first one, and here’s the other one, and you start again from the beginning. I’m overwhelmed to the point that I don’t want to wake up [in the morning], I don’t want to wake up.”

In interviews as the outbreak enters its ninth week, members of the center's staff described an institution in crisis, where procedures and protocols changed as the number of deaths increased, the state ratcheted up its enforcement efforts, revenues declined and the owners brought in consultants with expertise in infection control.  

What hasn't changed, the workers said, is their love for their young patients.  

Those who agreed to be interviewed did so on condition that their names and job descriptions not be published, for fear of being sued or fired. Three employees spoke with a reporter. Certified nursing aides, dietary, housekeeping and laundry aides have not had a contract since the center's owners, Eugene Ehrenfeld and Daniel Bruckstein, bought it in 2014; they have no job security.  

The workers described amid tears how each child, no matter how limited in communication skills or mobility, had an individual personality — a favorite toy, a love of pancakes, a smile. Some staffers took home residents' personal laundry or brought in barrettes and ponytail holders. They held birthday parties. “These kids touch so many lives,” one worker said. “You would be surprised.” 

More:Adenovirus outbreak: Parents of the Wanaque children tell their stories

More:Adenovirus outbreak: Health Department orders admissions at Wanaque center to cease

More:Confronting the challenge of containing the adenovirus in Wanaque: Elnahal

Many who work with the children in the center's ventilator unit, where the virus started and spread, view themselves as substitute families for the children, whose own families may live far away or be unable to visit the center frequently. Professional detachment is impossible, one said: “We interact with them every day. We talk with them. We clean them. We play with them.”

Working on the floor where the children on ventilators live “gives you a different perspective on life,” said another. She considered caring for the children to be a joy, not a job. “This is their home. These are my kids.”  

Frustration

Employees expressed frustration that those in charge did not transfer ailing children to hospitals quickly enough. They blame management for a lack of urgency when children became sick.  

When the caregivers spotted darkening secretions or blood in tubes that carried oxygen or nutrients to the body, or noticed that a resident had developed a fever, they were sometimes told to merely “monitor” the patient or to give Tylenol or Motrin to reduce the fever, the workers said.  

Hospital transfers required the approval of a doctor or administrator, they said. But sometimes it would be a day before the doctor would visit and approve the transfer.  

“I have no power,” one worker said. “My role is, follow the orders from the doctor, tell the doctor what’s going on, give him a report. All the decisions are made by the doctor, not by me.” 

Paul Fishman, the former U.S. Attorney who has been retained to represent the Wanaque center, said in a statement that “Wanaque’s priority is and always has been the health of the patients," and that those patients "have severe complications that require long-term specialized care."

"Every decision concerning that care is made by an experienced medical team, comprised of specialist physicians and nursing support," he said. "The facility has a stellar staff and every nurse and physician is encouraged to be an active advocate for their patients.”

At least two families whose children died in the outbreak are preparing to sue the center, and one lawsuit has already been filed. It alleges that staff members were "careless and reckless" in providing patient care and controlling the spread of infection. 

After the children started getting sick, but before the state Health Department conducted a spot inspection on Oct. 21, the workers used gloves but not masks or gowns when working with the ventilator-dependent children, one staff member said. They followed the infection-control protocols they were given, all three said.   

“I washed my hands before, and I wash them now,” said one. “We thought we were doing what we were supposed to do.”  

Stress 

When workers must apply new infection-control protocols with perfect consistency, the pressure is enormous. State health officials have cited the nursing home for infection-control lapses that pose an “imminent and serious risk of harm” to its patients. At least five federal and state inspections have been conducted. 

And there are financial pressures. Every day a bed goes empty, it costs the institution its daily Medicaid reimbursement of $518 or more per resident. Although the nursing homes has  92 licensed beds for children, as of Tuesday only 63 were filled.   

Monitors look over the workers’ shoulders as they wash their hands and change dressings. Each time a worker or anyone else enters a patient room, he or she must don gloves, mask and gown. Caregivers must remove their gloves, wash their hands and don a new pair several times for each patient as they change dressings for breathing and feeding tubes, change diapers or provide medicine.  

"With someone standing there watching you, you can make mistakes because you're nervous," said Miriam Mast, a nursing professor who has researched the effect of grief on nurses. "Your eyes might be swollen from crying, and you're not seeing correctly. Grief changes your thinking patterns," she said.

“Every day, there’s the constant stress of having to do all the work ... under the watchful eye [of the state] and the intimidation of management,” said a staff member who takes care of patients.   

“You’re waiting for another shoe to drop,” she said. Every time another young patient gets sick, staffers wonder whether the date for reopening admissions to the center will be delayed once more. 

Because of the stress they are under, said Mast, referring to the Wanaque nurses, "I really worry they may develop health problems." A nursing professor at Bethel College of Nursing in Indiana, she recently published research on nurses' experiences when their patients die.

Long-term care differs from hospital or emergency care because the health care professionals know their patients for months, if not years, she said. The Wanaque nurses "are at a very high risk of becoming discouraged and quitting their jobs," she said. "They will carry that for the rest of their lives," as they question whether the deaths could have been prevented. 

Admissions to the pediatric unit won’t be allowed to resume until at least two full two-week incubation cycles have passed since the last patient to get sick first showed symptoms. Based on the most recent illness onset of Nov. 12, that deadline stands at Dec. 10. “You’re on this countdown,” one worker said. “We made another day. We made another week. Then there’s another positive [test] and it gets restarted.” 

Vacancies created by the deaths and transfers of sick children to area hospitals have freed up space to separate the 40 or so children who remain. Since last week, the pediatric ventilator unit has been divided into three zones — red, yellow and green. 

The red zone houses 18 children who have had a confirmed diagnosis of adenovirus, including those who have returned from hospitals.  Eleven children who had some symptoms but were never tested are in the yellow zone and 15 children who never had symptoms and were never tested are in the green zone, according to the state Health Department.

No new cases have been reported since the separation of the children was completed on Nov. 17.  

Staff members, like the children, are also assigned to the red, yellow and green zones, with no crossovers permitted.  

Protective apparel is stacked in each patient room, and beside each room door. Taking these on and off — and “re-gloving” multiple times — adds minutes to every patient encounter. “You have eight hours to do a 10-hour job,” one worker said. 

The unit smells “like a swimming pool,” another added. Bleach-saturated wipes — stronger than those used prior to the outbreak — are now applied to every surface. Wipe-downs are frequent; any surface touched by an object carried in from outside a patient’s room, such as a disposable medication tray, must be cleansed.  

Since Nov. 20, a certified infection-control practitioner and a physician specialist in infectious diseases have been at the long-term care facility 40 hours a week. A monitor from the communicable disease service of the state Health Department was stationed on-site after Oct. 20. 

Sadness

The center’s administrators and managers have distanced themselves from staff, the workers said. There is little support for the emotional burden they bear, two of them said. A Thanksgiving letter from management to convey appreciation for their commitment during a difficult time came with a $10 bill attached. “I took it as an insult,” one worker said.   

Talking about nurses' grief is "a taboo subject," Mast said. "Nurses are not looked at as having grief — they're supposed to serve others." They need people to listen, and an opportunity to process their emotions, Mast said. Some will want to talk now, others may take six months to open up.

A staff psychiatrist offered counseling to the Wanaque nurses, but some workers said they felt conflicted about speaking with someone on the nursing home's payroll.  

The grief has been shared not only by those who provided direct bedside care, but also by others at the center — housekeepers, receptionists, therapists, and teachers.  

 “We are as much these kids’ families as their biological families,” said one staff member.  

“To suffer this grief and loss, and on top of it to be blamed – it's heart-breaking. We love them. We’re literally doing everything we can to care for them.” 

Email: washburn@northjersey.com