Grief Before Death

Struggling with the sorrow of anticipatory grief. 

Talk about this article with other patients, caregivers, and advocates in the General Discussions CURE discussion group.
Even before her husband died of lung cancer two years ago, Joyce Neifert was mourning. “I grieved for the life we used to have,” she says. She and Steve were close companions and nature lovers. The California couple went on hikes. They kayaked. After his diagnosis in 2003, those outdoor interludes became harder to manage.

When Neifert thought of their two teenage sons facing a world without a dad for company and advice, she felt even more bereft. As Steve’s health worsened, she had what she’d call “meltdown moments.” Hugs helped. So did long walks. After one trek, a neighbor told her, “I passed you today. It was obvious you just needed to be left alone.”

Mental health experts have a name for the jumble of emotions a caregiver experiences when a doctor delivers the news that the patient has little or no hope for cure or remission. They call it “anticipatory grief” or “anticipatory mourning.” They are only beginning to study the caregiver’s pre-death response and to figure out how best to offer assistance during the days, weeks, even months that precede a loved one’s death.

And for terminal cancer patients, there may be a number of months ahead. “There are almost no sudden deaths in cancer unless there is a very late diagnosis, which is rare these days,” says Matthew Loscalzo, who directs the Sheri and Les Biller Patient and Family Resource Center at California’s City of Hope, which specializes in cancer treatment.

There are plenty of misconceptions about anticipatory grief. “Originally there was this notion when somebody had a terminal or even questionable prognosis, the family might start grieving their loss in anticipation of death,” says Kenneth Doka, PhD, a professor of gerontology at the College of New Rochelle and senior consultant to the Hospice Foundation of America. “It led to this notion that you could almost finish your grieving prior to death.” The theory goes that a mourner has only so many tears to spend; the more that are shed beforehand, the fewer there will be after.

“Unhelpful,” says Doka.

The caregiver may indeed be thinking about the future loss but isn’t necessarily grieving “this future, far-off death,” he explains. Rather, he or she is mourning all the changes in life, large and small, as a result of the illness: the patient’s loss of energy, the loss of sexual intimacy, even something seemingly as mundane as the loss of someone to go to the movies with.

At the same time, the caregiver and patient may be forging deeper bonds than ever. “People think anticipatory grief or anticipatory mourning means you’re letting go,” says psychologist Therese Rando, clinical director of the Institute for the Study and Treatment of Loss in Warwick, Rhode Island, and author of How to Go On Living When Someone You Love Dies. “That’s not true. Some people tell you the most emotionally and physically intimate times are during the illness. There’s an awareness of what’s important and meaningful.”

These final moments of intimacy can take surprising forms. Shera Dubitsky, a psychotherapist who works for Sharsheret, an organization that supports Jewish breast cancer patients and their families, remembers when her own mother was dying of the disease.

Dubitsky was 19; her mom was 47. Sitting by her mother’s bedside in the hospital at 1 a.m., her mother seemingly “out of it,” Dubitsky let loose the tears she’d been keeping inside. “Out of this unconscious state,” she recalls, “my mother took her hand and placed it on my cheek. I will never in my life forget that touch. It was like her last maternal gesture to me. Twenty-two years later, I can still feel the heat on my cheek.”

There is nothing steady about the period leading up to a loved one’s death. One day the patient may accept the fact that he or she is dying; the next day the topic of conversation might be a fantastic cruise upon recovery. Caregivers ride a roller coaster as well. They melt down and repair, deny and accept, regret and embrace the moment in all sorts of variations.

In this dance of death and denial, hovering by the bedside is not recommended. “Patients tell us uniformly that it scares them when people sit and wait for them to die,” says Loscalzo. He suggests coming up with an activity plan: read a book out loud, watch TV, play a game of cards.

At a time when all seems hopeless, hope can still surface. And that’s normal. Paula Rauch, MD, a psychiatrist at Massachusetts General Hospital who works with children with serious illnesses, sees parents who hope their child will live to see snow melt or go to a Disney park. “They continue to imagine a future for their child,” she says, not because they’re in denial but because “the comfort of imagining the future can help them live in the present.” These moments can provide laughter and enjoyment for parent and child, for husband and wife. “Nobody can live with the moment by moment terror of impending doom.”

Talk about this article with other patients, caregivers, and advocates in the General Discussions CURE discussion group.
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