A family’s story of love, hardship, and disability, ended by COVID-19

Near the end of his life more than 30 years ago, a father made a final request of his second son: Watch over your older brother, David.

David Christensen didn’t live with the family. But in his 70-plus years, he was in many ways an emotional center for his brother, Dan, and sister, Pamela Scoglio, of Greensboro, N.C. In those decades, their parents died. The siblings were married and had children. Eventually hundreds of miles separated the Christensens, and yet David was a constant. The family always worried about his care, wondered about his happiness, and cherished moments of affection and warmth with their brother.

“He opened our eyes to the world and what’s out there and the differences that can exist,” Dan Christensen said. “I owe him for that.”

From about age 6 until his death from COVID-19 at 73, this month, David Christensen lived in institutions for people with developmental disabilities. He died earlier this month at his final residence, the New Lisbon Developmental Center, the state-run facility in Burlington County particularly hard-hit by the pandemic. Christensen was among the 194 out of 288 residents who tested positive for COVID-19, and one of 10, as of Sunday, to die from it. A staff member at New Lisbon also died of the virus last week.

For his brother and sister, his death is less about the pandemic than the conclusion of a complicated family tale of duty, hard choices, and love spanning three generations.

At his birth in Havre de Grace, Md., David’s parents were told their first born was healthy. Within his first year, though, it became obvious that he had serious developmental problems, according to a 2015 evaluation shared by his brother. As an adult, he was diagnosed with autism, Tourette’s syndrome, and profound intellectual disability.

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All his life, Christensen suffered fits of screaming and scratching, his family said. Doris and Charles Christensen agonized over their decision in 1953 to place him in the now-defunct Vineland Developmental Center, both siblings agreed.

“They did it at the recommendation of the doctors,” said Dan Christensen, of Fort Lauderdale, Fla., a reporter and founder of the publication the Florida Bulldog. “They were both good parents. Having to give up your son to other people is something we today couldn’t ever imagine.”

Christensen came home to Hillsdale, N.J., in Bergen County, for a few weeks every summer and for Christmas, and there were monthly weekend excursions to such places as Atlantic City and its open air amusement park on the Million Dollar Pier.

The visits could be challenging. Scoglio, nine years younger than her brother, remembers fearing him in childhood. Loud noises could trigger a tantrum, she said. Sometimes he acted out inexplicably, and even ferociously.

“I was perceived as the youngest and the weakest," Scoglio said she thought, “so he would take it out, physical aggression, even, on me.”

Often he seemed immersed in his own world. Names of people from the past, snippets of old memories, and meals he enjoyed came out as a soft, rambled monologue.

But his care needs were intensive. Getting washed and dressed required help, as did finishing a meal. As Christensen aged he lost his teeth, and staff at New Lisbon would puree his food before serving it to him. He could wash his own hands if directed to, but didn’t know how to control the temperature of the water. He got credit for fluffing his own pillow and pulling the sheets off his bed in that 2015 evaluation, and had a goal to learn to fold his own clothes. He could tell time, but couldn’t read.

Much of Christensen’s adult life was spent at the Woodbridge Developmental Center, which closed in 2014 during a lawsuit-driven reorganization to move people out of residential institutions to group homes.

His days were filled with meals, television, leisure activities, and a campus job shredding papers.

“He was a very quiet man, pleasant,” recalled Sheronda Swink, a nurse at New Lisbon who cared for Christensen for about three years. “You had to listen closely. He was very soft spoken.”

The nurse said Christensen could occasionally be encouraged to sing along with his favorite music, but his sister said he often seemed happiest just observing.

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“I think he liked being a fly on the wall,” she said. “He liked being at [his family’s homes] where he got the foods that he liked and could listen to the music that he liked.”

He also could be warm and funny. At a restaurant with panoramic windows, Dan recalled, his brother complimented the server on the wallpaper.

“When he was in a good mood and happy and loving, it was wonderful,” Scoglio said. “It was wonderful and I wanted that the whole time, but a minute later it could change.”

The family scattered as time passed. Scoglio moved to North Carolina. Dan Christensen and their mother moved to Florida, where David would visit a few weeks a year until his mother died in 2008. After that, his siblings visited him in New Jersey once or twice each year.

Scoglio’s son, Mike, now 35, was born with Down syndrome, but has had only mild developmental issues. Despite the miles between them, Mike developed a close bond with his Uncle David, delighting the older man with his Elvis impressions.

Scoglio tried to move her brother closer to her home in North Carolina. But the state’s emphasis on group homes meant there was nowhere equipped to meet David’s needs. She advocates for people with cognitive disabilities, and agrees the least restrictive environment is preferable -- as long as it’s safe.

New Lisbon notified the family by letter April 14 that 13 residents and six staff had tested positive for the coronavirus.

Christensen contracted the coronavirus in late April. He had been lethargic and wouldn’t eat, and was taken to Virtua Memorial Hospital in Mount Holly. He tested positive and was diagnosed with pneumonia, but after less than a week in the hospital was judged well enough to return to New Lisbon.

But in some patients, the virus appears to clear up, only to strike back harder.

May 5, while sitting down for lunch, David had a seizure -- thanks to medication, his brother said, that hadn’t happened for years. He was pronounced dead of a heart attack brought on by the virus at 12:34 p.m. that day.

“This is a virus that exploits weaknesses,” Dan Christensen said.

Both of Christensen’s siblings spoke highly of the staff at New Lisbon, saying they seemed to care about their brother and treated him well. They had not known the facility waited until May to quarantine infected people in separate buildings, until they read about the problems there in The Inquirer earlier this month.

New Lisbon workers who had complained of having to care for both infected and uninfected residents during the same shift said they recently started getting new masks each day.

“It would have been nice to know a little bit more,” Dan Christensen said. “It seems like maybe they weren’t quite as straight as they should have been.”

Scoglio last saw her brother David during a visit to New Jersey in October. He had aged visibly in the months since her last visit. She wondered whether they would be together again.

“He was getting older and slowing down,” she said. “After a big meal he would usually want to lay down and take a nap.”

Dan Christensen has thought about his father’s request since his brother’s death.

Take care of him the best you can.

“I promised that I would," Dan Christensen said, “and I hope I lived up to that.”