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When the Grieving Process Gets Stalled

Prolonged grief disorder is now an official condition; COVID-19 has made the problem worse

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It never occurred to Carolyn Hori that her mother’s death would throw her life into a tailspin.

“I went to the doctor because I was extremely tired. I thought maybe I had anemia,” she says. “I thought I was very healthy. I was one of those hard-driving, Type A career people. I had expected myself to bounce back.”

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Hori’s doctor prescribed grief counseling, telling her “You’re a functioning grieving person.”

spinner image the hori family from left to right kaz hori maria alonza and then david carolyn and emily hori
Carolyn Hori (second from right) with (l-r) father Kaz Hori, sister-in-law, Maria Alzona, brother David and mother, Emily Hori.
Courtesy Carolyn Hori

The business coach from Marina del Rey, California, had already experienced the death of a parent. Her father had died of a stroke six years before her mother. But this time, her grief symptoms became physical. Hori, 51, found a support group and paid for private counseling.

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More than just emotional upset

Experts say a major path toward healing is sharing emotions and speaking about the loved one. Whether it’s informal support from friends or family or a more structured form through a mental health professional, having support helps navigate bereavement. Grief is expressed in a variety of ways. It’s not just crying or feeling intense sadness, loneliness or anger. It can disrupt clear thinking, appetite, sleep and energy levels, causing physical symptoms, including exhaustion. The unprecedented number of pandemic-related deaths, as well as a newly adopted mental health diagnosis, mean that grief is impacting far greater numbers and likely for longer periods, thereby creating a more complex portrait of this universal truth.

“There is no one right way to do grief and no one model for grief,” says David Kessler, a grief expert in Los Angeles, who worked with psychiatrist Elisabeth Kübler-Ross. In her 1969 book On Death and Dying, she identified five stages of grief — denial, anger, bargaining, depression and acceptance.

Barriers to getting help

Seeking outside help for grief can vary, from online individual or group support to in-person individual or group counseling. It can be free or cost hundreds of dollars per hour. People might pay per session, or for a group of sessions or as a drop-in. Some organizations focused on grief have therapist-led support; other agencies that offer free services have trained volunteers or peer support.

“Cost is a huge barrier to getting support,” says Doran Oatman, a psychotherapist in Austin, Texas who specializes in grief counseling. “More and more psychotherapists are not choosing to accept insurance for a variety of reasons. It could be upwards of a thousand dollars every couple of weeks. Another thing is those that do accept insurance are often completely full and have long wait lists.”

But “not everybody needs clinical support for grief,” says Annette Juba, a clinical social worker at AGE of Central Texas.

“I do think everybody needs some sort of support,” she says. “The real danger in grief is when it happens in a complete vacuum and there’s not any external support.”

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‘Complicated grief’

Joanne Weingarten, senior clinical coordinator of adult programs at Our House Grief Support Center in Los Angeles, says the newly added prolonged grief disorder diagnosis in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) allows insurance to cover treatment costs. But she says some have concerns about “diagnosing something that is a natural response to a situation and the potential for pharmaceutical companies to try and medicate grief.”

However, psychiatrist Paul Appelbaum, M.D., a professor at Columbia University in Manhattan who chaired the committee overseeing the DSM revisions, says grief is not depression and doesn’t respond to meds. For the tiny percentage of the bereaved — perhaps as small as 4 percent — who exhibit symptoms of what’s been described as complicated grief or profound grief, he says, “this is not a disorder for which any medications are available.”

The official recognition as a mental health condition by the American Psychiatric Association (APA) specifies that the grief can persist for more than a year and continues to disrupt a person’s emotional and physical health.

“We all miss the person you lost, but if you’re so consumed by grief that you’re unable to get back to life and school and social relationships, it’s time to seek assistance from a mental health professional to diagnose whether you’re experiencing prolonged grief disorder,” Appelbaum says.

Specific forms psychotherapy designed to target prolonged grief do work, says Katherine Shear, M.D., an internist and psychiatrist who began studying grief in 1995. She was among the experts on the APA’s review team. As founding director of the Center for Prolonged Grief at Columbia, she developed treatment that she says, “can turn around a person’s life in a four-month period.”

“Their grief process gets stalled,” Shear says. The reasons can include preexisting mood or anxiety disorders or struggles with mental health, many life losses in a small period, sudden or unexpected death — as well as who died, how they died and how old they were at death.

COVID is a big one,” she says.

Loss of end-of-life rituals

The overarching social isolation of the pandemic, combined with stressors such as being prevented from physically being at their loved one’s bedside at death or not being able to attend a funeral due to coronavirus restrictions can cause longer term ill effects, experts say.

“Having your grief witnessed is one of things that facilitates your healing. We need rituals that bookend a life and many people were robbed of those rituals,” Kessler says.

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Juan Lopez and his mother Juanita Zavaleta
Courtesy Juan Lopez

The unknowns of the coronavirus in April 2020 prevented Juan Lopez, from traveling across the country to the Boston suburb of Beverly to see his mother, Juanita Zavaleta, when she ran a fever and died of COVID-19 at age 79.

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“I was not physically there and didn’t get to say goodbye to her in person,” he says. “At the time, there were no vaccines. I didn’t know what to do and I felt helpless. I felt like she was taken from me.”

Lopez, 47, of Los Angeles, says he’s “still dealing with it.”

“It’s been very difficult,” he says. “It created a huge shock wave in my family and situations with my siblings, who are all dealing with it in different ways, including some not speaking to others. I don’t have that support.”

New data released in May by the World Health Organization illustrates the extent of worldwide pandemic-related death or death due to inability to be treated because of the pandemic: Nearly 15 million more people died than would have been expected during normal times. Additionally, Imperial College London’s global calculation of orphanhood and caregiver deaths shows that an estimated 7.9 million children lost one or both parents, and as many as 10.4 million children lost a primary or secondary caregiver. The new data on children is an update to research published in April and in October 2021 by Susan Hillis, formerly of the Centers for Disease Control and Prevention.

“The principal sources of support for the child are less physically or practically available and less present than in the pre-pandemic period,” which Hillis says, “dramatically increases prolonged grief.”

Kimberly Junda, of Clifton, New Jersey, sought online grief support when her father, Gregory Junda, 70, died in 2020 of COVID. Despite an initially positive prognosis, he was gone within a month.

“We weren’t allowed to visit in the hospital,” she says. “We could communicate with him via video chat. In that sense, COVID played a major role affecting our grief and being able to support the person and go visit.”

Junda, an only child, recalls that she and her mother were allowed to see her father as a farewell when death was imminent.

Unlike Junda, Josie Rodriquez spent seven years caring for her father, who had dementia. She and her seven siblings lost their mother as kids. So, when her father, Julio Pastrano Rodriquez, was diagnosed with dementia in 2013, she retired early from her job as a sixth-grade language arts teacher to care for him.

Rodriquez, 63, was his primary caregiver until his death in 2020.

“I got to know him in a way I couldn’t do with my mother,” says Rodriquez, who divides her time between Santa Fe, New Mexico, and Austin, Texas. “There was still a tremendous sense of loss.”

“Grief does not have a time limit,” Shear says.

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