When Carole Major experienced excruciating ankle pain in January, her devoted family faced a tough choice: keep her home in their bubble or take her to a rehab center.
They chose the latter, where their mom tested negative for COVID-19 and got the first dose of the vaccine. A few weeks later, however, the coronavirus claimed the 78-year-old, making her one of more than 6,000 Long Islanders lost to the disease.
Throughout the pandemic, the nursing home crisis has centered on data and policy. But behind the data are heartbreaking individual stories, as too many vulnerable Long Islanders are still dying after contracting COVID-19 in rehab facilities and nursing homes.
Long Islanders like Major.
The mom, grandma and great-grandma to three daughters, five grandchildren and five great-grandchildren had been living with her oldest daughter, Dawn Stevens, in Ronkonkoma. Dawn and her sisters, Kenya and Lisa, kept their mom healthy and happy despite the pandemic, surrounded by family, at home, and COVID-free.
But in January the ankle pain hit and Major was hospitalized and then moved to Smithtown Center for Rehabilitation and Nursing Care. In late January, Major was diagnosed with COVID-19 and soon became dehydrated, her children said. In early February, she was transferred to the hospital, where she died, alone, on Feb. 27, just a day before expanded nursing home visitation guidelines went into effect – though those rules, and the further loosening of restrictions made by federal officials last week, likely wouldn’t have helped Major’s family.
Last week, immediate family gathered in person, and more than 150 people convened on Zoom, to remember Major as a matriarch who was always willing to help anyone who needed it.
Growing up in Queens, Major was a tap dancer and baton twirler. She and her late husband, Edward, raised their three daughters in Queens and later in Brentwood, where Major served as class mom and Girl Scout troop leader. She founded a youth nursing ministry at her church. She loved playing Bingo, memorizing the numbers that had been called and tracking multiple cards at a time. And after her children were grown, she fostered newborn babies whose parents were unable to care for them.
"My mother was that mother who was everybody’s mother," said Major's daughter Lisa Dunner of Valley Stream.
Major also was devoted to her work, where she focused on mental health care. She entered the Army Reserves so she could become a licensed nurse, even as it meant time away from her family for training and service. She worked at Creedmoor and Pilgrim psychiatric hospitals, and then at Long Island Developmental Center, where she continued those efforts, often handling the night shifts so she could be with her children during the day.
"People who were in need gravitated towards my mother. She became a lot of people’s second mothers," said daughter Kenya Beard, of Dix Hills.
Plenty of potential policy changes emerge from stories like Major's.
As the state’s handling of nursing homes has come under fire, the spotlight has been on the pandemic's early days. But nursing home residents continue to die of COVID-19. And too little attention is being paid to that ongoing tragedy.
In a statement, Smithtown Center said it provides "the highest level of care" while complying with all state and federal regulations.
"Our hearts go out to all the families who have lost loved ones during this global pandemic," the statement said. "Privacy laws prevent us from discussing the specifics of any resident's care. Restriction on visiting during the pandemic is dictated by the Department of Health and the CDC as are many other Covid restrictions."
Major's death left her family with many questions. And, like so many others, her children particularly lament their inability to be with her in those last weeks.
"There's nothing like being able to hold someone's hand and know that your family is there with you," Dunner said.
That’s why Beard, a nurse practitioner and associate provost of Chamberlain University in Chicago, whose research focuses on health disparities, pushed for a vaccinated, tested companion to be able to sit with their mom. The Smithtown facility, she added, denied that request.
"We’re trying to help our mother, but you tie our hands and don’t let us help her," Beard said.
Plenty of potential policy changes emerge from stories like Major's. Perhaps every nursing home staff member should be required to be vaccinated, or at least only vaccinated staff should work with new, unvaccinated patients. Perhaps staff testing should be more frequent. Perhaps, as Major's family suggested, vaccinated observers should be allowed in to any long-term care facility, to make sure care is adequate. Major’s family has reached out to the state Department of Health, hoping for answers.
But for Major’s daughters, the hole is particularly large – and looms larger because of how and where she died.
"I will never see my mother again," Stevens said. "All I know is I wasn’t allowed to touch my mom or say goodbye to my mom at the end. And there’s nothing anybody can do to bring my mom back."
Randi F. Marshall is a member of Newsday's editorial board.