Behind Closed Doors, ‘the Difficulty and the Beauty’ of Pandemic Hospice Work

Hanen Soui is used to death. Sudden death and slow death. Traumatic deaths and peaceful deaths.

This year was different.

The coronovirus epidemic dramatically changed Ms. Saui’s work as a home hospital nurse in New York. Safety precautions created a physical distance between him and his patients and even last year completely cut off some of his co-workers from their clients’ homes. It deprived families and caregivers of ways to grieve together, and hospice workers, but familiar with death, with a staggering scale of loss.

Through all the pressures, Ms. Saui and other workers provided moments of happiness and joy to the patients and their families.

“You sit and you listen,” he said. “They express their fears, they express their feelings, and you guide them and tell them what to expect.” After a patient’s death, she said, “I often want to hug family members, but now I can’t do it.”

Instead, Ms. Soui said, “I pray and do the best I can.”

More than half a million Americans have Died of coronavirus, And many are separated from their families and killed in pain. Ms. Saui protested with the conditions, which she called a good death: “Peaceful, pain-free, and surrounded by her children at home.”

While nurses have continued to visit the home in person, some clergy, social work and medical sessions went online as families preferred it. By August, much of that care switched back to in-person visits, but with strict precautions, wearing full PPE on time and keeping it six feet apart whenever possible.

Although the majority of Ms. Saui’s patients did not have a hospice last year when she entered the hospice, challenging restrictions were imposed on all patients and carers. Home hospice care can last for several months, and workers often develop close relationships with patients and their families.

But the epidemic means fewer opportunities for families – and hospice workers – to mourn together at funeral or memorial services. For more than a year, those ceremonies have been shaped Strictly limited by several states Try to stem the spread of the virus.

When hospice patients die, their stewards often work through their own grief and loss in weekly staff meetings and gatherings with colleagues who share the same clientele. These employee meetings are now online, but the loss of holding each other and shedding tears together has deeply affected Dharamshala activists, Melissa Baguzis, a social worker who specializes in pediatric matters. She has developed her own methods to handle the loss of her young patients.

“I take a moment, light a candle and read their favorite book or listen to their favorite song,” she said. “I have my time for them. We are connected to their families, but when I am in their homes, it is their grief and I am going to support them. I need to get out of my loss.

The hospice worker at MJHS Health System, a nonprofit institution that covers New York and Nassau counties, is comfortable around death in a way that many Americans do not. But the epidemic has put an extra weight on them and their patients, Ms. Baguzis said. “We all share each other’s grief now more than ever,” she said.

The Rev. Christopher Sigmani, an Episcopal priest who is a hospice clergyman, said he has tried to be “even with his despair, anger, despair, depression and anxiety” for his patients.

He often told patients’ family members that it was “okay to be angry at God” over the loss of their loved one. But he said that the death of a beloved cousin from the coronavirus had changed his understanding of his work.

Father Sigmoni and his family were unable to stay with their cousin, a retired doctor from India, during three days while he was on ventilator at the hospital at the end of his life. He and a handful of relatives said that “a few prayers” at the funeral home, he said, but were unable to do “proper burial” or send the body home to India because of the virus’s ban.

“I really didn’t understand when people would ask, ‘Why me and my family?” “Now I was asking the same question. I told God, ‘Now I am angry at you, and I hope you can forgive me.’

Last month, Josénil Castillo was paired with a battery of medical machines and monitors surrounded by a crowd of his parents and stuffed animals, with Javier Urrutia, a music therapist, and Ms. Baguzis entering her bedroom . Despite his declining medical condition due to a rare genetic disease, it was a happy day. It was Josénil’s 11th birthday.

Mr. Urrutia launched into a traditional Mexican birthday song, “Las Menitas”. Josaniel’s mother and father, Yasiri Caraballo and Portirio Castillo, joined. Ms. Caraballo wiped tears. “Tears of joy” she said as she did not expect her son to be 11 years old.

She requested another tune, and launched into “Que bonita es esta vida” as Mr. Urrutia. They sang the final chorus together, a part of which can translate to:

Oh this life is so beautiful

Although it hurts sometimes

And despite its sufferings

There is always someone who loves us, someone who takes care of us.

Later, Mr. Urrutia said that most people are “unaware of what is happening behind closed doors, that there is both difficulty and beauty.”

In countless homes this year, “there has been a lot of pain and suffering, it cannot be denied,” he said. But in Dharamshala work, he said, “You are seeing all the heroes doing the simple work of life there, taking care of each other.” The husband is taking care of his wife or the mother is taking care of her son. “

“Dying is a part of life,” he said. “Only living things die.”

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