Making the Adjustment: From Giving Care to Accepting Care

For those who are caring for someone else when diagnosed with breast cancer, the transition to being in care may be hard. Yet it’s vital to recognize personal needs, ask for help and find ways to adapt.

Janice Rackovan, 61, of Phoenixville, Pennsylvania, was concerned about how her breast cancer diagnosis might affect her 89-year-old mother. And her biggest caregiving worry was her sister, who was very ill with a bone marrow disorder that can lead to leukemia.

Her mother had medical problems, so Janice regularly drove her for doctors’ visits and errands. She was also the only sibling who was a donor match to give marrow to her sister. Having breast cancer meant she was no longer allowed to donate her marrow.

“That affected me most, that I wouldn’t be able to help her,” Janice says. “I wept and wept.”

She turned to family, friends, a support group and her strong faith. Her mother had a stroke, and Janice helped her sisters care for their mother until her death. They rotated shifts caring for their sister, who died before Janice finished radiation therapy.

Like many caregivers, Janice, who is a hospice nurse and volunteer coordinator, had trouble thinking about her own needs. “It was very important for me to give as much care for my mom and sister as possible,” she says. “Caregiving helped me get through.”

Caregiving Identity

Many of us take care of a child or children, older relative, spouse or partner, patients or others. “Even if a woman doesn’t fall into some specific role of caregiver, most women are,” says Page Tolbert, LCSW, a New York City psychotherapist specializing in cancer issues. “When a woman gets a diagnosis, she usually is going [into treatment] from some caregiver role.”

As a caregiver, you may have trouble reaching out for help and may assume you are the only one who can, or will, take responsibility for the ones you are caring for. Letting someone else step in can stir strong emotions.

Caregiving may be at the core of your identity, says Ms. Tolbert. That’s OK, if it doesn’t keep you from putting yourself first when you need help. “That’s a good thing to learn to do,” she says.

The change can be a shock. Kerry Kenna, 54, had a home day care in El Cajon, California, and two daughters in college when she was diagnosed. Her surgery was scheduled quickly and parents scrambled to find other child care. At once, Kerry lost her income and some self-esteem.

“It was really foreign to me to feel weak or not well. I was always the support system in the house,” she says. “I didn’t know how to handle this role.”

Too often, caregivers see needing help as failure. But that’s not what caregiving is about. “‘Caregiver’ isn’t a box you check. You aren’t either a caregiver or a [care] receiver. It’s reciprocal and mutual,” says Cindy Moore, PhD, associate director of the Marjorie E. Korff Parenting at a Challenging Time (PACT) program for parents with cancer at Massachusetts General Hospital in Boston.

When diagnosed, Angil Tarach-Ritchey, 53, of Ann Arbor, Michigan, tended to her grandchildren and husband, and ran an elder care support group. Treatment made tasks challenging, but, as a nurse, she was used to helping other people and didn’t want help for herself. Then a friend told Angil she was robbing others of the joy she felt when caring for someone.

“She said I wasn’t the only one who should e xperience that kind of blessing. I still remind myself of that when I really can use help and find myself resisting or feeling guilty,” she says.

Giving Care While Getting Care

Some fear help with duties means giving up caregiving entirely. Dr. Moore suggests thinking about what parts are most important and how to continue those.

Stacy Vivino, 43, was “the power mom,” a stay-at-home mother, vice president of the home and school board, and active in her Philadelphia parish. She was sure her diagnosis would change none of that.

By the second round of chemotherapy, Stacy knew she couldn’t do it all. “It was very hard for me to say, ‘I need your help.’ All of a sudden, you’re not the same person.”

When others drove her daughters to school and activities, she felt she was disappointing her family. “Finally, I knew it was better for me to get better, so I could be better for them,” she says.

Stacy held onto caregiving she could manage, such as helping with homework on her bed rather than in the dining room. “We changed things around, but I still had some mom role.”

Caregivers for spouses or partners may have added isolation and worry. Irene* handles chores, medical management and more for her partner, who has a serious condition affecting the brain. Since her diagnosis, Irene makes care decisions based on whose need is more pressing, hers or her partner’s.

With no family support, Irene talks about her caregiving situation only to healthcare providers and members of caregiver discussion groups. “My main support has been online,” she says. “I am thankful for the support I receive there.”

Sylvie Chartré Paul’s husband began chemotherapy for blood cancer 10 months before her diagnosis. Sylvie, 49, cared for him while working two jobs. After her diagnosis, the Toms River, New Jersey, woman continued both jobs out of financial necessity.

Her husband took a treatment break to care for her. Friends and family prepared meals and conducted fundraisers.

Shared caregiving helped in unexpected ways. “When you are both fighting cancer and undergoing treatments, you understand more,” says Sylvie. “I admire him for the way he’s handling it and he admires me. In a way, it strengthened our relationship.”

As a caregiver, it’s important to let yourself receive care when you need it.

“This can be an opportunity for you to change something that could be a good thing for you to change,” says Ms. Tolbert. “There’s always going to be a time of life when you’re going to need someone.”

*Name changed by request