What prolonged grief disorder is — and isn’t

For years, mental health professionals were surprised when standard therapies for depressed people did not work for prolonged grief, says M. Katherine Shear, M.D., founding director of the center at Columbia. Today, it’s clear that PGD differs not only from typical grief but also from depression and other mental health problems, she says.

Under the DSM-5 definition, PGD can be diagnosed a year after a loss. Another authoritative source, the International Classification of Diseases (ICD), puts the mark at six months. But it’s not just about the length of grieving, Neimeyer says: “The question is, is your grief disabling?”

People with PGD yearn for their lost loved one with an urgency that lingers much longer than it does for most people, Shear says.

Many also struggle to believe the death really happened and avoid reminders that it did. They may feel that their lives have no meaning, struggle to relate to others and feel emotionally numb, intensely sad or angry. And those symptoms don’t just happen occasionally: they happen most days, according to the American Psychiatric Association.

They are “extremely shaken to the core,” says Holly Prigerson, a professor of sociology in medicine at Weill Cornell Medical College in New York. “They don't really understand how they can have a happy future without this person in it.”

Bridget Clawson, 68, of Edmonds, Washington, had such feelings, she says, long after the 2009 death of her husband Ted. “I thought that it was not possible for him to be dead and gone,” she says. “I’m a science believer … but I really felt like maybe he would show up in somebody else’s body.”

Clawson, who is the author of The Widow Lessons: One Widow’s Journey Through Complicated Grief, was diagnosed with PGD two years after Ted’s death. When she joined a grief support group, she thought she might be out of place among newly bereaved people but soon realized she fit right in. Eventually, she says, she was able to accept that her husband was dead and to keep his memory alive in healthier ways — such as talking about him with her seven grandchildren.

Disabling grief is treatable

The psychiatric association says 7 to 10 percent of bereaved adults develop PGD. Some studies suggest the number is closer to 4 percent. It’s most common in older adults and caregivers and after sudden or traumatic deaths. People with a history of depression or bipolar disorder are at increased risk.

It’s possible to have PGD along with depression, post-traumatic stress disorder, anxiety or other mental health problems that require their own treatment. Depression is distinct from PGD, because bad feelings are not just focused on the death, Prigerson says. For depressed people “everything stinks,” she says.

The primary treatments for PGD itself are specialized forms of talk therapy. In the version developed by Shear, patients work through 16 weekly sessions to process their loss and look toward the future. Barba says a particularly helpful, though difficult, part for him was repeatedly telling the story of Margie’s death. “Each time I did that with my therapist, there were different nuances that came out,” he says. In a 2018 speech to death educators, he said the retelling reminded him that his wife “died at home, surrounded by family, with peace and respect.” It “helped heal me,” he said.

Other treatment ideas are under study. Prigerson and her colleagues, for example, are enrolling some patients in a study of naltrexone, a medication used in addiction treatment, on the theory that it might reduce feelings of yearning and craving for lost loved ones. They also are working on prevention efforts, including an app that will match bereaved people for mutual support and an already available website for grievers called the Living Memory Home.

Moving on from disabling grief doesn’t mean forgetting your loved one, Neimeyer says: “We need not only honor their memories with our anguish. We can honor their memories with our appreciation, with our gratitude, and by acting on the life lessons that we learned with or from them.”

Grief: Ways to Cope, Assist Others

There’s no one right way to grieve, experts say. But there are practices that might help. Here are some of them.

When you have recently lost someone:

·         Take self-care seriously. Try to eat well, exercise and keep regular sleep habits. Beware of relying on alcohol, pills or other substances to regulate emotions, says psychologist Robert Neimeyer.

·         Reach out to others. “It can be very hard to do,” but isolation is worse, Neimeyer says. “I would not have made it through without my girlfriends,” says Theo Boyd, 51, of Whitney, Texas, who lost her father to suicide three years after losing her mother in a farming accident.

·         Consider grief support groups. They aren’t right for everyone, but “really do help” some people, says psychiatrist Katherine Shear. It can be especially helpful to connect with “someone who understands the type of loss that you experienced,” such as fellow widows, says researcher Holly Prigerson.  

When you want to help someone in mourning:

·         Be a doer, a respite-giver or a listener. Doers help with practical matters, like managing finances. Respite-givers help mourners take a break with a walk or a movie. Listeners do just that. Boyd, the author of a new book, My Grief Is Not Like Yours, urges people to listen “without comparison, without reservation, without judgment … we need to allow everybody to be heard.”

·         Ask “how are you doing today?” Neimeyer says that invites a more meaningful answer than the usual “how are you doing?” Don’t minimize a loss with comments such as “be happy that the person is now in heaven,” he adds. “Our job is to be present for the suffering.”

When your grief persists and stops you from moving forward:

·         Consider assessing your risk for prolonged grief disorder. Take the Grief Intensity Scale online assessment at Weill Cornell’s Center for Research on End-of-Life Care.

·         If you are struggling, get professional assistance. “Seek someone who has specialized training” in grief, because most therapists don’t, Neimeyer says.

·         If you are thinking of suicide, at any time, seek help right away. The number for the Suicide and Crisis Lifeline is 988.