A Family Affair

The patient isn’t the only one affected by a cancer diagnosis


May 2015

By Lisa James

The last five years have been trying ones for Anna Delgado, 61, of Alhambra, California. First diagnosed with early-stage breast cancer in February 2010, she was then found to have a stage 3 recurrence three years later and then a stage 4 metastatic recurrence just this past March.

Delgado’s initial reaction was “shock and disbelief, but not denial and definitely not anger. What I felt was disappointment.” And how did her family react? “I’m sure they were scared and upset for me and various thoughts went spinning through their minds.”

It’s only natural after a cancer diagnosis for attention to center on the patient. But cancer’s effects ripple out to touch the patient’s family and loved ones.

“I used to joke that they have a doula (a companion) for birth; why don’t they have a doula for the family when something like this happens?” says Gail Konop Baker, author of Cancer Is a Bitch (Da Capo Press). “It’s hard to be going through all of that and taking care of your family at the same time.”

Role Reversals

One of the ways cancer affects families is by scrambling family roles. “The caregiving process is extremely stressful for family members,” says Hoda Badr, PhD, of the Icahn School of Medicine at Mount Sinai in New York City. “For children who are caregiving for parents, there’s a major role change; now the child has to step up and take an active care role and that is often a source of stress.” Studies have found that caregivers—especially women, younger family members and those who are employed—report fatigue and disrupted sleep (Cancer 6/1/13).

Resources for Cancer Support

American Cancer Society
cancer.org
Information on a wide variety of cancer-related topics; links to local chapters

American Psychosocial
Oncology Society

apos-society.org
Mostly aimed at professionals in the field; has a public helpline

American Society of Clinical Oncology
Cancer.net
ASCO’s patient information site; material on caregiving, discussing cancer with children, other topics

Cancer Care
cancercare.org
Links to counseling, support groups; information on family discussions regarding cancer

Cancer Support Community
cancersupportcommunity.org
Hotline, links to local affiliates, other resources

“We haven’t been doing enough work focusing on the family dynamic,” Badr says. “Who’s in charge of what, things like that. What happens when there are disagreements in families?”
Sometimes caregivers “are dealing with their own guilt,” says Michelle Fingeret, PhD, of The University of Texas MD Anderson Cancer Center in Houston and president of the American Psychosocial Oncology Society. “How can family members explore their own issues when the patient’s needs come first?”

What’s more, Fingeret says, “it’s not unusual to have various family members dealing with cancer around the same time. So the roles, who is the cancer patient and who is the family member, get blurred.” When either or both people need to make lifestyle changes, such as not smoking or eating a healthier diet, “it can be difficult for a person to make those changes if the partner is engaging in unhealthy behaviors,” says Badr.

“I think one of the biggest challenges for spouses is navigating the system as a team,” notes Badr. “The well spouse may want to step up but doesn’t know the best way to do that. Patients will say, ‘Yes I’m sick but I still can do certain things,’” in response to an over-protectiveness that Badr says can also occur after treatment ends and the patient needs to “re-engage back into normal life.”

Baker says her husband “went into caretaking mode but I didn’t like that feeling. I was fighting the idea that I was going to be weak.” After noting that her family was “a little more tender with me” for a year after her diagnosis, Baker adds, “You think things are going to change more than they do, but life keeps hurtling forward.”

Adapting to a New Normal

Life continues to move forward for Delgado, who works as a legal research analyst. She says, “My family and friends have definitely picked up the slack for me. Things like family time, short trips, overall happiness and health have become more important.”

Badr says good communication skills can help couples deal with problems that arise. “The goal is to help couples work together as a team to address the challenges they face instead of trying to mind-read,” she says. “Sometimes, for example, people need respite care so that the caregivers can have some time to focus on their own needs and they need help with the guilt that comes with that.”

Reaching out to others may mean going beyond the immediate family. “I think the key is not only that individual relationship of the patient with the caregiver but also the whole social support network,” says Fingeret.

Sometimes that support network includes cancer survivors. “Sadly I know quite a few people who have gone through breast cancer and apart from my doctors they were the first port of call,” says Madhulika Sikka, professional journalist and author of A Breast Cancer Alphabet (Crown). “I really think that they were the people best equipped to tell me that what I was feeling was ‘normal’ for someone going through treatment.”

Family members and friends can also help in more tangible ways. Delgado says it’s helpful to make a specific offer: “‘If you need a ride or a second set of ears, you can count on me. I will pick you up and I will go with you.’” Other potential tasks include making meals for the family and grocery shopping. However, Delgado notes, “Some people will be angry and they don’t want help; in that case, leave them alone and send cards.”

Some people turn to support groups and professional assistance. “I am very fortunate to have a wonderful social worker,” Delgado days. “She has assisted me with referrals, helped me to relax, facilitated paperwork and spoken to my care team on my behalf. Best of all, she’s an outstanding listener and provides me with tools and suggestions to help me cope.”

What also helps is to remember that people don’t always want to be reminded that they have cancer. “People never know what to say to you and that made me feel awkward,” Baker says. “ So I’ve learned that when people have health problems I talk to them about TV shows and gossip—not about what stage their cancer is at.”

Delgado has one more piece of advice. “I would let go of stories about anyone who didn’t turn out well. If you have stories of people who survived, that’s what people want to hear. You want to hear positive, hopeful, upbeat.”

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