Richard Roberts’ family grew concerned and anxious when his Belfast nursing home began prohibiting visitors March 14.

The Commons at Tall Pines was following recommendations from the Maine Center for Disease Control and Prevention aimed at reducing the likelihood that the coronavirus, which is particularly dangerous to older people in congregate care settings, would be introduced into the facility and spread.

Kelly Reif, who has over 30 years of nursing experience, said the family was worried that her father, who was nonverbal because of Alzheimer’s disease, was not having his basic needs met. Her father’s toothbrush had remained packaged for two weeks after he moved in. A podiatrist performed a procedure on an ingrown toenail without the family’s knowledge or consent, Reif said, and the toe turned black because of inadequate follow-up care. And it took three months for the facility to replace a hearing aid it lost, she said. The family did not file any complaints, out of fear of retaliation.

With few options for nursing homes in the area, Roberts’ wife, who did not want to be named in this story, visited daily over the last three years to advocate for him and tend to basic needs. She brushed his teeth, shaved him, washed his face and hands, brought him healthy snacks and made sure he drank liquids, which he could not do on his own.

Roberts died Saturday at the age of 78. He was not diagnosed with COVID-19, the disease caused by the coronavirus. In fact, he twice tested negative for COVID-19 and also tested negative for the flu. His family has many questions about the cause of his death, whether he was alone at the time and whether his basic needs were being met as the staff scrambled to contain the coronavirus. The family has yet to pick up his remains from the funeral home or see a death certificate.

“The one time I couldn’t advocate for my father was when he was dying, and it sucks,” Reif said. “You can only imagine how unsettling it was for our entire family. I’m worried (some of) these people are dying of neglect. If you can’t speak, you’re at the mercy of everyone around you.”

Matthew Griswold, the director of Tall Pines, said in an email Friday that he could not discuss Roberts’ care or respond to a detailed account of Reif’s concerns – even though Reif emailed Griswold and gave him permission to speak to a reporter.

The case underscores the challenges facing patients in nursing homes during the pandemic, especially when family members can’t visit them, because of precautions taken to prevent the spread of the coronavirus.

Nursing homes across the United States have been hit hard by the coronavirus, which spreads easily with person-to-person contact. Outbreaks have led to scores of deaths in these homes, because of the close living arrangements among residents, many of whom have underlying health conditions.

In Maine, five long-term care facilities are confronting outbreaks that had infected 164 people as of Friday, according to the Maine CDC. A total of 112 residents and 52 staff members have tested positive, and nine people have died.

Tall Pines accounts for 38 of those cases – 28 residents and 10 staff – and five of the nine deaths.

Griswold said he is working with his management company, North Country Associates, and other staffing agencies to bolster his workforce during the pandemic. He said Tall Pines is following Maine CDC regulations by conducting universal testing, isolating COVID-19 patients, and increasing screening of staff and residents, among other things.

“The Tall Pines staff are to be commended for their courage and commitment to our residents and families during this unprecedented pandemic,” Griswold said. “We will continue doing our best to manage this difficult situation and eradicate this virus from our beloved community.”

Maine CDC Director Dr. Nirav Shah said the state is investigating outbreaks at Tall Pines and four other nursing homes. The CDC’s initial response, he said, is focused on limiting the spread of the disease and ensuring health care workers have protection and technical assistance. But it would take time before the state would be able to look into practices that may have contributed to the outbreak, he said.

For Reif, a nursing project analyst at the Institute for Johns Hopkins Hospital, those issues include the difficulty nursing homes have because of low pay in hiring and retaining well-trained staff, especially in rural parts of Maine.

Roberts’ case also highlights a major flaw in the coronavirus response: that prohibiting visitation, though necessary to contain an outbreak, leaves patients at increased risk of neglect.

The state Department of Health and Human Services has increased its focus on nursing homes since the pandemic, including reaching out to all 93 nursing homes about their infection control, visitor screening, and other policies, spokesperson Jackie Farwell said.

The DHHS’s Licensing and Certification division monitors nursing home care and investigates credible allegations of abuse or neglect, Farwell said. Adult Protective Services provides and arranges services to protect incapacitated or dependent adults who are in danger.

But some families hesitate to involve state authorities because they fear repercussions. That’s where the Maine Long-Term Care Ombudsman Program comes in, director Brenda Gallant said.

The ombudsman program provides free and confidential advocacy services to families with loved ones in nursing homes and families researching facilities, Gallant said. The program is independent from state government, though it works closely with regulators and nursing homes, she said. That independence allows them to be better advocates for concerned families.

“A lot of families fear retaliation for having called us, but we have never experienced that,” Gallant said.

The Commons at Tall Pines has a history of health violations and the lowest possible rating from federal regulators, receiving one star out of a possible five from the Medicare program. The facility did not substantially meet program requirements in 2018 or 2019, according to state records.

The facility was told in 2018 to implement an infection prevention and control program after inspectors determined that staff “failed to ensure urinals, bedpans, and graduate containers were handled in a manner to prevent the spread of infection.”

A 2019 state inspection also noted issues with cleanliness, including surfaces in common areas such as dining rooms. It also noted that one of two nurses reviewed had not undergone a mandatory 12-hour training in infection control and dementia.

Griswold previously told the Press Herald that all issues identified in its inspections have been addressed and did not contribute to the outbreak.

But Reif, who lives in Maryland and has traveled to Maine every few months to spend long weekends with her father, said she witnessed a lack of cleanliness and sanitation at Tall Pines.

After her father’s roommate told Roberts’ wife he had gotten maggots on his feet from an infection, Reif said she took it upon herself during a visit last summer to purchase cleaning supplies and disinfect the room.

“The floor in the room was filthy, sticky from urine spilling out of his urinal,” she said. “The room smelled of infection and urine.”

She wasn’t informed about the podiatrist performing a procedure to fix an ingrown toenail until three days later. She happened to notice his black toe one day when she took off his sock. She said she raised concerns about her father not getting follow-up care, but the toe eventually healed.

Lingering questions about her father’s death are the most difficult. She has received conflicting reports about whether he was alone when he died. She can’t understand how someone can go from stable to deceased in a matter of days without anyone noticing.

Reif said the questions and the fact that the family can’t have a proper memorial service are making it difficult for the family to have closure. She hopes that sharing her experience will help prevent other families from having to go through a similar experience.

“The worst of all of this is knowing my dad died alone – it’s inhumane,” she said. “If he had really turned for the worse, some one could have at least called and put a phone up to his ear so we could say goodbye.”

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