For seven years, Marie Trull lived with the uncertainty that followed her husband’s diagnosis of chronic lymphocytic leukemia in 1997. At first, he managed well. But when the leukemia became more aggressive, he endured rounds of chemotherapy, bouts of pneumonia, life-threatening infections and hospitalizations.
After 18 years of marriage, Trull fell naturally into caregiving for her husband, Stephen. She changed his bedding, picked up soup at a favorite restaurant, bathed him when he couldn’t control his bowels, tended to his sores and drove him to medical appointments. And like many other caregivers, she took leave from her job as a court clerk.
Her husband’s death in September 2004 was unexpected, coming after an upswing in his health. Trull was left grieving two sudden losses—her husband and her own identity.
“I’m a middle-age woman who has no idea who she is,” says Trull, of Anaheim, California. “I’m a lost soul.”
Trull’s experience isn’t uncommon. Many former caregivers whose spouse, child, sibling, friend or relative dies are left adrift, grappling with intense emotions surrounding a death on top of a struggle to reclaim some semblance of normalcy in a life that had been devoted to caregiving. Caregivers also are confronted with conflicting and confusing emotions. They may be happy that their loved one is no longer suffering but angry about having sacrificed so much, including jobs, friendships and energy. They may be relieved that their highly stressful role as caregiver is over, but feel intensely guilty about that relief.
“These people are sort of in limbo,” says Barbara Given, PhD, RN. “They’re not caregivers anymore and yet they can’t just return to their old life.”
Indeed, Trull sometimes worries that resuming her normal activities will “erase” her husband. “I think I feel guilty about making progress,” she says. “Like it’s OK that he’s gone and I’m just moving on.”
She’s had a hard time, for instance, renewing friendships or building new ones, especially since many people never asked how she was coping with caregiving. “My entire social life was Steve,” Trull says. Returning to work was also a challenge. “I was afraid of being pitied,” she says.
On the other hand, Trull’s stress level has decreased significantly and she sleeps well, which “surprises the heck out of me,” she says.
The good news is that most people do eventually readjust, Dr. Given says. Sadness, anger, anxiety and grief lessen over time, although they may never fully go away. You may find new hobbies, new friends and a new career path.
Trull is also on a path toward healing. Although she once enjoyed gardening and quilting, she initially found it hard to resume those hobbies because they triggered painful memories of her husband. Today, though, she’s quilting again and even bought a blueberry bush for her garden—something she and her husband had planned on doing together.
She’s also considering volunteer work. At first, Trull thought about doing something related to cancer. Although it was territory that she was intimately familiar with, it proved too painful. Now, she’s leaning toward involvement in different activities. “I’m trying to think outside of the box, to look for something other than the thing I’ve known so well,” Trull says. “After all, who I was before I became a caregiver is gone now.”