A book detailing hardships for long-term care residents to be sent to Congress

Karla Abraham-Conley has been a fierce advocate for residents of extended-care facilities and the friends or family who care for them since the pandemic began.

Now Conley, of Utica, has teamed up with other advocates around the country in support of the Essential Caregivers Act, legislation sponsored by U.S. Rep. Claudia Tenney, R-New Hartford. The group, Essential Caregiver Movement, recently finished a book it plans to send to all 535 members of Congress.

“Protecting Them to Death: The Impact of Isolation in Long-Term Care” contains short stories from the loved ones of long-term care residents affected by the pandemic from each state. The book also includes photographs and the full language of the Essential Caregivers Act.

The stories tell of elderly relatives who died isolated from their families and young people who regressed in their development without care from their parents and loved ones among other difficult circumstances. While each state has at least one story, some like New York, Texas and Florida have several across multiple pages.

While many pandemic restrictions have been lifted, some long-term care facilities still are restricting visitation to residents, Conley said.

The Essential Caregivers Act would create guidelines on who qualifies as an essential caregiver and what steps they would need to take to ensure the safety of caregivers, residents and staff.

The legislation identifies essential caregivers as an individual who provided care, including emotional support, to the resident in a nursing home, group home or similar facility prior to the health emergency. The essential caregiver must be a family member, have power of attorney or be the healthcare proxy of the resident.

“This is what this bill is truly for,” Conley said. “It isn’t just for COVID, it’s for any public health emergency.”

The issue is deeply personal for Conley after her own mother, Rosemary Abraham, passed away last October. Abraham, who suffered from Alzheimer’s disease, was transferred to a local hospital from Presbyterian Homes & Services in New Hartford as her condition deteriorated shortly before her death.

Doctors found Abraham suffered from severe dehydration, sepsis and high sodium levels, which were causing possible brain swelling, Conley said. They also found a large pressure ulcer on her mother’s back.

The book is another effort to keep the spotlight on the issue of essential caregivers. Conley said she hopes federal representatives at least read the page for their state and are reminded of the challenges facing residents in long-term care and their families.

“I’m just afraid that the whole thing has just gotten left behind,” she said. “Nobody is talking about it anymore. And it needs to remain in the forefront of everything because that’s how important it is.”

“Protecting Them to Death: The Impact of Isolation in Long-Term Care” will soon be available on the Essential Caregiver Movement website, essentialcaregivermovement.org.

“Every story is so similar, yet so different,” Conley said. “You get on a connection with the people who are submitting stories and you’re meeting them and they’ve touched your lives.”