Death and the Grieving Family: Talking About the Last Taboo Subject

By Lela Nargi

The first death was anticipated in the way we often hope for an end to suffering for the very elderly and infirm.

The second death was a shock, occurring out of the blue, while our attention was focused elsewhere. Namely:

On the tragic but steeled-for inevitability of the third death, which had been creeping its way towards us since mid-summer.

By the time of the fourth death, a mere five months had elapsed since the first death. In its shadow, my husband, Rob, our 11-year-old daughter, Ada, and I found ourselves in a collective state of sorrow, rage, and most of all, isolation—adrift in the almost incomprehensible landscape that is grieving.

By some estimates, 10 million Americans are affected by the death of a loved one every year. So our family, no family, is truly alone in the experience of loss. And yet, we live in a culture that is loath to talk about death—either in preparation for it or in attempting to deal with its aftermath. “People try to deny the inevitability of death out of fear,” says Lauren Schneider, clinical director of child and adolescent programs at the Los Angeles grief support center, Our House. “It’s the last taboo subject in Western society.”

Little wonder, then, that we don’t know how to make sense of death for ourselves when it strikes. Don’t know how to share our experience of it. Don’t know how to ask for help in coping with it. And certainly don’t know how to guide our children through it with any conviction of usefulness or clarity.

The first death, of my husband’s 95-year-old friend, Joe, didn’t affect our daughter much. Beyond feeling sad for my husband, she seemed unscathed by the occurrence and her lack of reaction struck us as “normal.” Less normal: My mother-in-law had been diagnosed with a rare and aggressive melanoma of her sinuses shortly before Joe’s death. We knew she had only months to live. We tried to gently break this news to Ada, even as she could see the mass taking over her grandmother’s forehead, pushing against her right eye and threatening to require its extraction.

In private to us, Ada pronounced this growth “scary” but didn’t want to discuss it. And we mostly honored her wishes to, as she put it, “just focus on being happy.” In our gloomiest moments, she took to incongruous cheerful chattering, seemingly denying the inevitability of her grandmother’s condition. It was a behavior more in line with what grief literature pinpoints as appropriate for 7-year-olds.  In short, she was regressing, seeking out a version of her younger self she thought would bring her comfort.

My husband took a leave of absence from work in order to take over some of his mother’s care from his stepfather. The atmosphere in our home became grim. Distracted, depressed, and distant, my husband, knowing death was imminent, was mourning already, experiencing what bereavement specialists call anticipatory grief. At the same time, we were all in limbo, not knowing when or how the death would actually happen, and not sure if it was reasonable to wish for it to come soon. I tried to concentrate on caring for the three of us, even as I felt myself becoming increasingly forlorn and exhausted.

In the midst of all this, my father-in-law underwent a hernia operation from which he did not recover. Eighteen days after the surgery, he was removed from life support and died within five breaths. There was little time for sorrow. Caretaking of my mother-in-law resumed immediately, true grieving postponed so that all attention could be focused on the parent still living—what Schneider calls converted grief, “when all a person’s energy is consumed by other things,” she says.

It was around this time that Ada began to be unable to fall asleep at night. In the day, she was exhausted and also frustrated with her school friends, who after an initial outpouring of concern, promptly forgot there had been any death at all. “The social isolation piece is big” for kids, says Darcy Walker, executive director of the Center for Grieving Children in Philadelphia. “Whether it’s that no one around them has lost anyone yet, or they’re at an age where it’s not okay to talk about it, or maybe they want to keep the death to themselves—it can become a spiral.” Ada’s forced cheerfulness began to subside, replaced by intense headaches and stomach pains, what Walker calls “expressing emotion through the body.”

With the death of my mother-in-law, three weeks after the death of my father-in-law, Ada’s cheerfulness disappeared altogether. There was a funeral and the first public tears from my daughter; surely that was healthy, we thought. But on Christmas day, a close family friend, Sean, was admitted to the hospital with complications from colon cancer. We resumed caretaking. And 11 days later, he died, too, leaving behind his wife, five-year-old daughter—and us.     

His death was the last straw. On its heels came anger. Walker told me of the importance of modeling appropriate grieving behavior for children. “We need to teach them what a healthy expression of emotion is,” she said. Was my anger a healthy expression of emotion?  I wasn’t sure and furthermore, wasn’t sure I cared. There was no one for me to turn to. My husband was in deep mourning, for both his parents but also for the loss of “home” they represented. I had stopped calling friends, having discovered that in addition to people’s reluctance to discuss death, there was an insinuation of grieving hierarchy: the worst was the loss of a child, then a spouse, then a parent. There was no place in the hierarchy for a daughter-in-law, or a friend.  

Ada became sullen and prone to lashing out about seemingly insignificant grievances: a ridiculous comment made by her gym teacher, or the wilted state of the lettuces at the grocery store. When I confronted her one night after a particularly scathing round of criticisms, she shot back, “I don’t want to be critical! I’m just so upset about everyone dying that it’s leaking out in all the wrong places.” Says Schneider, “Children need to be given permission to express all their feelings.” All we could do was hug Ada and tell her we understood.

Rob and I decided to inform Ada’s teachers about the deaths. It’s a support tactic recommended by grief specialists, including Robert Zucker, author of the book The Journey Through Grief and Loss. The teachers wrote back heartfelt responses. But none of them reached out to Ada, a fact she reported with dismay. Her experience is in keeping with the results of a study conducted by New York Life and the National Alliance for Grieving Children, which found that most teachers in the U.S. are insufficiently trained in grief—and that almost half of all children rate their teachers a “C” or lower in helping them cope with death.

Day by day, Ada became more withdrawn. We let her play hooky a couple of times; it only made her eventual return to school more anxious. Her inability to fall asleep at night turned to inconsolable sobbing. Every night, into the night, she gasped for breath while Rob and I held her. Was this a healthy expression of emotion?

I called Robert Zucker. He told me, “On a practical level, after someone dies, parents are thinking about keeping school and friends rolling for their kids. But they neglect to ask what the kids need.” What did Ada need? She was old enough to understand the things that confuse younger children: that death happens to all of us, and that it is forever. Experts caution that you should never tell your children that you won’t die—you’re lying, and eventually, the lie will out. “Want to see a negative outcome?” says Walker. “Have a family that lies then tells the truth years later.” Intuitively, we knew that. But did Ada need to hear that Rob and I probably wouldn’t die anytime soon? I mentioned this to her. The nights of sobbing continued.

At Zucker’s suggestion, I told Ada what would happen to her if we did die—information he says helps alleviate fear of an unknown future that kids of any age can experience. I told her that her aunt and uncle were her legal guardians in our absence; she seemed interested and relieved. When I tucked her in that night, the sobbing redoubled.  

“One of the biggest surprises for people is how much kids grieve and understand,” Walker told me. It was true—I’d been shocked at the depth of Ada’s sorrow. I refocused my attention on the fact that her grief was most extreme at bedtime. Was she worried that we’d die in our sleep? I asked her. “Not exactly,” she said. She was more worried that she’d wake up in the morning and “people” would be dead—this was how she’d learned about her grandmother and Sean. I didn’t know what to say to reassure her. I was worried about the same thing.

The biggest daytime issue for Ada continued to be her sense of isolation from her peers. “Often,” Walker told me, “preteens benefit from a grief group. They hear people their age talking about things they relate to and say, That’s how I feel, too.”  With Ada’s reluctant agreement to try one out, I started calling around. It was rough and slow going. Some groups I found were only for children who had lost a caregiver, or a sibling. Some, like Camp Erin, offered programs over the course of a few days in summer—a lifetime away. Some seemed to have vanished since they’d been posted online. Finally, I was recommended to Gilda’s Club in Manhattan. Its one caveat was that the griever had to have lost someone to cancer, like its namesake, comedienne Gilda Radner, who died of ovarian cancer in 1989. Cancer was two of four deaths for us—which counted just fine, the phone intake volunteer informed me.

Rob and I made a preliminary visit, uncertain of the ultimate suitability of the Club’s children’s program, offered to kids age 5 to 12. It was such a broad range; what if there were only six-year-olds in the group? Would this only serve to isolate Ada further? We were relieved to discover that the current group of kids included among its members another 11-year-old girl and a 12-year-old girl. We told Ada about it and a huge smile of relief broke across her face.  “When do we start?” she asked.

This story of grief is ongoing—as are they all. Grief is not a linear process with a hard and fast end-date; in fact, writes Zucker, “it may actually be a lifelong process.” As the most intense bouts of sadness and incredulity subside, we know we are due for a second round of mourning—the infamous “second storm,” which Zucker identifies as a “time of renewed deep pain.” But as of this writing, we are cautiously optimistic about the possibility that some relief might lie on the horizon. I’m trying not to give in to the expectation that meeting two other grieving tweens will make Ada’s issues magically disappear. A mother can dare to hope, though.

Some further resources for grieving families:

Photograph by Jerry Ferguson, via Creative Commons