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Relatives of long-term care facility residents fear COVID-19 isolation does as much harm as the virus

Caregivers for Compromise believe separation precautions are "saving our loved ones to death"

ST. LOUIS — People whose loved ones have spent the last year in long-term care facilities are reminding lawmakers their loved ones are emotionally harmed by some COVID-19 mitigation practices.

Carrie Leljedal, with Illinois Caregivers for Compromise, said Wednesday the Centers for Medicare and Medicaid loosened restrictions, adding indoor visitation and physical contact if both parties are vaccinated.

RELATED: Nursing home residents are now able to get hugs, federal government says

“It’s a step in the right direction, but until we restore residents’ complete rights, and as a minimum be sure if this ever was to happen again, every resident would have an essential caregiver, or two, we’re not finished,” Leljedal said.

Leljedal explained why she believes it’s necessary.

“There are some people today who have not seen a family member or friend in 363 days,” she said. 

She believes it adds to mortality, or at least takes away from the mental health of people in long-term care facilities.

It’s the subject of her organization’s slogan — Isolation Kills Too. Leljedal didn’t see her 33-year-old son, Lynn, for almost 130 days. Lynn was born with a rare seizure disorder and lives in an intermediate care complex.

“In the beginning, it made sense to lock the facilities down,” said Leljedal. “Even maybe for 60 days. But once we got past that first hurdle, and we realized proper PPE, proper hand-hygiene and social-distancing, there were ways to let minimal people back in.”

Leljedal was asked if there comes a point in time when the treatment is worse than the cure.

“And that’s where we are, now,” she said. “We are saving our loved ones to death.”

Group members are traveling to the state capital in Springfield, Friday, to lobby lawmakers for the Emergency Essential Caregivers Act, which would allow every resident to be entitled to a minimum of two essential caregivers who have access, regardless of conditions.

“We are calling it a ‘banniversary,’” said Leljedal, “because they banned visitors one year ago this Saturday. We are taking 500 yellow signs with us that say, 'Isolation Kills Too.'”

Leljedal said Caregivers for Compromise has 700 members in Illinois and 14,000 nationally.

The policy guidance announced Wednesday from the Centers for Medicare and Medicaid Services comes as coronavirus cases and deaths among nursing home residents have plummeted in recent weeks at the same time that vaccination accelerated. 

RELATED: Report: Nursing home COVID-19 cases down 82% since December

According to the Associated Press, people living in long-term care facilities have borne a cruel toll from the pandemic. They represent about 1% of the U.S. population, but account for 1 in 3 deaths, according to the COVID Tracking Project.

Government officials acknowledged that isolation deepened the misery for residents and their loved ones as long-term care facilities remained locked down much of last year. The ban on visits went into effect almost one year ago and only in the fall were facilities allowed to begin socially distanced outdoor visits and limited indoor ones.

"There is no substitute for physical contact, such as the warm embrace between a resident and their loved one," CMS said in its new guidance, "Therefore, if the resident is fully vaccinated, they can choose to have close contact (including touch) with their visitor while wearing a well-fitting face mask and performing hand-hygiene before and after."

The Associated Press contributed to this story.