An Oncologist’s Reflection on Family Caregivers

From the Editor's Desk
November 3, 2015
Lidia Schapira, MD, FASCO

One of the most rewarding and inspiring aspects of my work as a medical oncologist is having the privilege to provide guidance and to accompany patients and families during very stressful times. Much has been written about the fact that cancer affects not only a patient and his or her spouse, but also the inner family circle and network of friends who form a community. Less attention, perhaps, is given to the incredible acts of solidarity and kindness that arise, unprompted, at such difficult times. After more than two decades in practice, I am still moved when I witness spontaneous displays of affection. These often require resourcefulness, creativity, and generosity harnessed to help support a loved one who is undergoing treatment for cancer or struggling to cope with an uncertain future.

Cancer affects family life and disrupts family routines. Husbands may be thrown into roles that may be unfamiliar, such as the managing parent and principal caregiver to his wife and children. Partners are forced to accommodate to new routines and roles and re-evaluate their intimate relationship. Men and women may react differently to caregiving challenges, and it is common to see men approach these tasks quite methodically, especially if they are entering an unfamiliar territory. What matters most, and is crucial for success, is that each spouse remain flexible and that the couple remain open to each other’s needs and concerns and maintain open communication during a period that is experienced as chaotic and frightening. share on twitter 

You have to learn to listen rather than be a cheerleader,” wrote Marc Silver, author of “Breast Cancer Husband”. Couples who are able to communicate openly tend to fare better. As an oncologist, I have learned that involving spouses in treatment planning and providing guidance along the way can reduce the spouse’s feelings of isolation and provides the support they genuinely need and deserve. Silver comments on the benefits of this approach:  “We have together faced this very difficult disease and learned how wonderful it is to have each other”.

Parenting provides its own challenges, even without the added stress of illness. It becomes more complicated when dealing with tough physical and emotional symptoms, as well as the demands of medical treatment. Expert advice from my colleague Paula Rauch, MD, has served my patients well over time. Dr. Rauch always reminds me that parents know their children best and families have negotiated many challenges and transitions before cancer intruded in their household. By reflecting on the strategies that have helped a child with smaller challenges, parents can find clues for ways to support them in the face of cancer. share on twitter Understanding the interplay between temperament, development, communication skills, and each child’s perspective on the parent’s illness provides important data that guides each family and helps them find their way forward.

A few practical tips to remember: be honest and name the illness, try to carve out protected family time, and maintain the children’s normal schedules as much as possible. Children also learn important life lessons by watching the way adults respond to challenges and emergencies, so it is important for adult caregivers to maintain a healthy sense of perspective and build a supportive network that may include neighbors or friends.

For an oncologist, treating cancer is always a challenge, but even more challenging is to provide guidance and psychological support to the person who bears the illness and his or her family.