UPDATE: State orders nursing homes to disclose all coronavirus cases.

The call from the Paramus nursing home came Monday afternoon. A staff member told Rita Poggi her mother had a low-grade fever and a gurgling sound in her lungs, so she was given Tylenol and oxygen.

By 5 a.m. the next morning, Mary Kyryakos, 90, was dead.

Poggi didn’t have any reason at that point to believe the coronavirus was present in the Dellridge Health & Rehabilitation Center, but she does now. Just hours after an employee told her there was no way her mother had COVID-19, she got an email from the facility alerting families that another resident had been admitted to the hospital 10 days earlier and had tested positive for the virus. He died as well, the letter said.

“I know we’re not the only ones going through it, and other people have lost people who were younger,” Poggi told NJ Advance Media Wednesday, fighting back tears. “But the secrecy is just so scary... They should tell people. People should know.”

State officials said 148, or 39%, of the state’s long-term care facilities had at least one patient with coronavirus as of Saturday, but the list of those facilities is not publicly available. Approximately nine percent of the deaths in New Jersey were linked to nursing homes, the state said, but Poggi wondered how accurate the count can be when deaths like her mother’s go uninvestigated.

Families who have loved ones in nursing homes said that getting answers has been impossible at times, with busy phone lines and staff too focused on tending to ill patients to provide updates. Some say they are not being notified about infected residents until it’s too late. Even healthcare workers in the field said they are not getting the full story about who has the virus.

Mary Kyryakos, seen here in an old photo with seven of her 11 grandchildren, died March 31, 2020 at a Paramus nursing home.Provided

The state does not explicitly require nursing homes to contact family members or residents’ representatives when there is a suspected or positive COVID-19 case in their facility, said New Jersey’s Long-Term Care Ombudsman Laurie Brewer.

However, a law that went into effect in February — after an adenovirus outbreak at a Wanaque nursing home killed 11 children — requires nursing homes to have, as part of their outbreak response plans, “clear policies” regarding notifying residents, staff and families about an outbreak. An outbreak is defined as at least one confirmed positive and one symptomatic individual, the Department of Health said.

Health Commissioner Judith Persichilli said Friday that her department has reminded nursing homes of this responsibility.

Jonathan Dolan, president & CEO of the Health Care Association of N.J., which represents long-term care providers, said he is confident the state’s 375 long-term care facilities are doing everything they can to communicate with families.

“I have an aunt in a facility in Bergen County and yesterday I received family notice the minute they went positive. That is the standard," Dolan said. “We recommend a vigorous position of communicating with our families and I don’t know of a facility who would not tell families of the existence of a positive and all measures to limit it.”

Brewer said her office typically fields around 800 calls a month from people about allegations of abuse or neglect in nursing homes. In the last month, nearly every call has been coronavirus-related and largely about communication problems, Brewer said.

“Most facilities are doing the best they can to keep the lines of communication open with families, but with events unfolding as quickly as they are now in New Jersey, there are just a lot of families out there waiting and worrying,” Brewer said.

They have good reason to worry. Across the country, nursing homes are trying to protect their vulnerable residents with employee screening, intensive cleaning and isolation procedures. But the outbreaks continue, even prompting one New York nursing home CEO to suggest families bring their loved ones home to protect them.

State officials in New Jersey have not come close to suggesting that, and Dolan said the number of nursing homes here with significant outbreaks is in the single digits. In each case, he said, the state has assisted with testing and containment — and been transparent about it.

The state has not said how many coronavirus cases are in long-term care facilities, but Dolan estimates it is around 350.

Facilities with outbreaks of more than one death include Woodcrest Health Care Center in New Milford; Lakeland Health Care Center in Wanaque; Family of Caring at Montclair; Atrium Post Acute Care of Princeton; Laurel Brook Rehabilitation in Mount Laurel, and St. Joseph’s Senior Home in Woodbridge.

Dolan said he believes nursing facilities are following the association’s recommendation to quickly alert families about positive cases, but there are issues that can cause complications and delays, including comorbidity (two diseases affecting a patient at once), testing delays and many patients being off-site in hospitals.

But advocates and union leaders worry the state and nursing homes aren’t being transparent about the scope of the problem.

Persichilli this week declined to share the names of the long-term care facilities with positive cases, saying it would be like giving out the infected residents’ home addresses.

Bryn Lloyd-Bollard, spokesperson for 1199 SEIU, which represents health care workers in New Jersey, said transparency is vital.

“Absent more detailed information from the state about where positive cases are being identified, it's not possible for us to compare the official numbers with the situation that our members are experiencing on the ground,” Lloyd-Bollard said in a statement.

Over the past month, there have been multiple incidents in which staff said they were kept in the dark.

The union said members at Woodcrest Health Care Center in New Milford had reported a “serious crisis” with multiple suspected COVID-19 deaths, but it took nearly a week for the nursing facility and state officials to confirm the possible outbreak. The facility said 16 residents and 6 staff members have tested positive and five have died.

One certified nursing assistant at an Essex County nursing home, Veronica, told NJ Advance Media that rumors had been swirling around the facility for days about several patients being taken to a local hospital with the coronavirus. On Thursday, workers at the center marched into the administrator’s office demanding answers, said Veronica, who asked her last name remain private because she fears retaliation.

Only then were the rumors confirmed, she said.

And in South Jersey, a visiting nurse filling in on a shift at Lions Gate Skilled Nursing in Voorhees said she asked if anyone at the facility was infected and was told no. It wasn’t until several hours into her shift that a coworker told her an employee had tested positive and that the eight patients in isolation were suspected cases. She confronted her supervisor who said their coronavirus test results were pending, she said.

She spoke anonymously because she fears losing work for speaking out.

Christine M. Fares Walley, a spokeswoman for Lions Gate, said the facility informed residents, staff and family of the positive case immediately, and the memo was posted online. She confirmed that they are waiting for test results for “several” residents, whose rooms are clearly marked per infectious disease protocols.

Residents from St. Joseph's Senior Home are helped onto buses in Woodbridge, N.J., Wednesday, March 25, 2020. All residents were moved by to a CareOne facility in Whippany.AP Photo/Seth Wenig

Brian Lee, executive president of the non-profit Families for Better Care, said releasing a list of affected nursing homes could be a comfort to those worrying whether an outbreak is occurring in a given care center.

Providing public access to the list would also allow families to make more informed decisions about their loved ones’ care, he said.

“It empowers families to hold providers accountable for what is taking place in these facilities. If they don’t know, there is no layer of accountability and there’s great alarm for folks,” Lee said.

Pennsylvania resident Rick Kaiser said he learned there was a suspected coronavirus patient at his mother-in-law’s Essex County nursing home as she was about to be transported to a different facility on March 16. The coronavirus patient was taken to a local hospital on March 15 and tested positive two days later, Canterbury Care in Cedar Grove said.

His 72-year-old in-law ended up remaining at the nursing home. Communication was almost non-existent, he said, so the family relied on seeing her on the three weekdays she left the nursing home for dialysis.

“It was clear she was deteriorating,” he said. “She lost a lot of weight in the last couple weeks.”

Finally, late last week, Kaiser had his mother-in-law discharged from the facility and took her home to his fiance, a home health aide. But there, the situation worsened when his in-law began showing coronavirus symptoms, including diarrhea and loss of appetite. They took her to a local hospital where she tested positive for COVID-19.

Kaiser said providers should be required to immediately notify families if a resident is even suspected of having the virus so they can make an informed decision about removing their loved one from the facility.

“The elderly are so susceptible to it and they are in close quarters,” Kaiser said. “Something like that should be disclosed immediately.”

Canterbury Care said they attempted to contact Kaiser’s mother-in-law’s daughter on March 17, when the facility was informed of the one positive case, but may not have been able to connect with her.

“Since it was made via phone call, there is no confirmation documentation that she was spoken to about this incident personally,” Canterbury Care Spokeswoman Brianna Walulak said in a statement.

Poggi suspects her mother died from the virus at Dellridge, but will never know for sure. The nursing home did not return a call seeking comment, but since Poggi was told her mother wasn’t tested, Mary Kyryakos’ death will likely not be reflected in the state’s count. Now, Poggi is left feeling the facility kept things from her at a critical time.

As a young widow in 1967, Kyryakos moved her six daughters from Syria to Paterson to give them a better life — and she deserved better, her daughter said.

“It’s too late for us,” she said through tears. “But maybe not for other people.”

Avalon Zoppo may be reached at azoppo2@njadvancemedia.com. Follow her on Twitter @AvalonZoppo.

Rebecca Everett may be reached at reverett@njadvancemedia.com. Follow her on Twitter @rebeccajeverett.