By Jennifer M. Gangloff

For many people who are caregivers for someone with cancer, caregiving becomes not just what you do, but who you are. Your very identity is intimately entwined with being a caregiver. But what happens when “your” patient gets well enough that he or she simply doesn’t need constant care anymore? What happens when you’re no longer a caregiver? Who are you now? And how do you let go of caregiving?

Tammy Wolfgram found herself facing those questions when her husband, Marc, recovered from stage 3 adenocarcinoma of the esophagus.
“For two years, my main purpose in life was to help him beat his cancer,” says Wolfgram, of Hartland, Wisconsin. “When that changed, I was left with a huge gap and a loss of my sense of identity.”

Val Burgess felt a similar loss when her husband, Jerry, no longer needed a caregiver after a stem cell transplant for myelodysplastic syndrome (MDS). “I became co-dependent taking care of him,” she says. “Your identity becomes tied to being a caregiver.”

And it’s no wonder. Many caregivers spend 20 or more hours a week providing care, often for years. Caregivers help with bathing and dressing, manage medications, flush central catheters, give injections, pay bills, file insurance claims, do errands, make late-night runs to the emergency room, clean up vomit after chemotherapy, quit jobs, relocate, abandon friendships and neglect their own health and well-being. And even when active treatment for cancer has ended, the caregiving can go on for many more months.

That heavy investment in caregiving can make it difficult to adjust to life after caregiving ends. That’s especially true if the person you were caring for dies (see sidebar, page 64). Although you probably won’t be the same person you were when you first became a caregiver, and your life likely won’t be the same, you can find a “new normal” when your caregiving role ends. In fact, for some who have witnessed how fleeting and fragile life can be, it’s an opportunity to take new paths, make sense of traumatic experiences and come out on the other side stronger.

But it’s not an easy journey.

One major problem is that resources for former caregivers are lacking, says Barbara Given, PhD, RN. Dr. Given, a professor in the College of Nursing at Michigan State University and a university distinguished professor, has researched caregiving since the late 1970s, with a focus on cancer for the past 15 years. Although programs for active caregivers abound and patients often have access to long-term services, former cancer caregivers are essentially left to fend for themselves once their role has ended. “It’s a very important yet understudied and underdeveloped area of caregiving,” Dr. Given says.

Burgess understands that all too well. When her husband was diagnosed with MDS in December 2000, they packed up their family—their children were 16 and 10 at the time—and moved from Sheridan, Wyoming, to Seattle for several months so he could have a transplant.

Burgess spent her days shuttling back and forth between their apartment and the hospital, caring for their children, managing their insurance and financial problems, handling renters at their home in Wyoming and trying to keep her business as a commercial artist and writer afloat. After exhausting days, she often awoke at 4 a.m. to work.

When they returned to Wyoming, Burgess continued to try to do it all, from managing yard work to insisting on going with her husband to doctor’s visits. Meantime, he was getting better, going back to school and trying to shrug off her caregiving overtures.

It wasn’t until Christmas 2004 that Burgess was finally able to relinquish her caregiving role, mostly. “I don’t know if I will ever give it up completely,” she says. “But finally I accepted this semblance of normal life, which allowed Jerry his own life, me my own life and my children their lives. It’s so much more free and fun now.”

Several factors worked to Burgess’s advantage. First, she had kept up her career while caregiving, although it was a struggle. That gave her an identity outside of caregiving, as well as a refuge. And when caregiving ended, it was still there for her. She also deliberately sought out diversion and happiness in her daughter’s fun-filled soccer games and in nurturing her son’s artistic talents. And she took care of herself by exercising, eating well and seeing a therapist for guidance.

“You have to find a self-directed life,” Burgess says. “To some, that might sound selfish. But the patient no longer needs you. So, you’ve got to create a life for yourself.”

What Burgess experienced in letting go of caregiving for her husband is very much like the separation anxiety parents go through when their children leave the nest, says clinical social worker Renata Marinaro, LMSW, family services program coordinator for CancerCare in New York City, a national organization that provides information, counseling, financial assistance, educational programs and other services to cancer patients and caregivers. “The patient may be relieved to not be dependent anymore,” she says, “but the caregiver has a very hard time with that.”

Jean Merritt did have to let go of her child—both when caregiving for him ended and when he was well enough to go away to college. Her son, Merritt Navazio, was diagnosed with acute myelogenous leukemia in 2001 and had a transplant in early 2002. Merritt quit a job she’d just started and moved with her son from Potomac, Maryland, to Seattle, where they stayed for several months. Her husband flew out to help every couple of weeks.

Her caregiver load lightened when they returned home. And in the fall of 2003, Merritt’s son headed for college.

“It was good to see him able to go off on his own, but it was hard not to worry,” Merritt says. “The bigger readjustment, though, was with my husband since we’d been apart for four months and my total focus was on getting Merritt well. ”

Still, she transitioned more easily out of the caregiving role because she faced another major project that demanded her attention—building a new house hundreds of miles away.

“Today I am mostly fine,” Merritt says. “I miss my son but not the day-to-day routine of caregiving. What I can’t let go of and probably never will is the underlying worry about his future health and all the issues that could come up as a result of the treatment.”

In her work with current caregivers, Dr. Given and the nurses in the studies she runs now talk to them about how things might change when their role does. “The intensity and length of caregiving you provide can influence how hard it is to transition when caregiving ends because you’ve made more changes in your life,” she says. “The positive note is that most people do well and can adapt when caregiving ends, and their own anxiety, depression and burdens improve.”
Although you may not find a lot of resources for transitioning away from caregiving, there are some things you can do to make it easier on yourself, Dr. Given and Marinaro say.

• Acknowledge conflicting or confusing feelings because they’re perfectly normal
• Allow yourself time to mourn, whether it’s for the loss of your loved one or the loss of a role you so strongly identified with
• Seek out support from family, friends or your faith community
• Ease back into your social environment
• Give yourself credit for the time and hard work you poured into caregiving
• Seek professional help if you have difficulty with daily tasks, isolate yourself, engage in substance abuse or have feelings of hopelessness

If you’re currently a caregiver, you can take steps now to make the transition easier for yourself later. Although it may be difficult or sound impossible, setting aside time for yourself is important, Marinaro says. Maintain social connections, exercise, eat at least one healthy meal a day, schedule respite care so you can take a break and stay involved in hobbies.

Like many caregivers, Tammy Wolfgram didn’t generally do that. So when her husband began struggling to shed his role as patient during his recovery, Wolfgram struggled to cling to her role as caregiver.

“It’s who I was,” she says.

But over a period of several months, Wolfgram finally realized that’s not who she was anymore. So, like Burgess, she deliberately set out to find a new direction. She worked with her husband to re-establish their relationship as husband and wife, not patient and caregiver. They moved closer to relatives, and she got involved in the family’s golf course business.

And she found a way to tap in to her lingering caregiving needs. Along with her husband, Wolfgram now runs a popular online support group for caregivers through the Association of Cancer Online Resources (www.acor.org) and a website about esophageal cancer (www.eccafe.org).

“I put too much identity into that role of caregiving,” Wolfgram says. “I’m not sure I did it as well as some people might. You have to cast around and find a new identity for yourself. It wasn’t easy. I really had to grapple around and find a way back to something more like our pre-cancer days. It’s a life-altering experience.”