By Mary Turney
Manager, Social Work
One of the first reactions of many patients at learning of a new cancer diagnosis is often a flood of concerns about the impact their illness will have on spouses, partners and other family members. “Who will take care of my wife (or husband)?” or “My children have their own lives. I don’t want them to be burdened with taking care of me!” are the kinds of remarks frequently made by patients when confronted with the news of a cancer diagnosis. These thoughts reflect not only a genuine selflessness but also a real apprehension about the wellbeing of those who will accompany the patient through the emotional and physical rigors of treatment. Primary focus is inevitably placed on the needs of cancer patients by the medical team yet attention must also be paid to those who provide the support so essential for anyone undergoing cancer care. Family and friends play a pivotal role in contributing to successful cancer care and their wellbeing requires thoughtful consideration as well.
The impact on caregivers encompasses many areas of wellbeing: physical, spiritual, emotional and practical. The National Alliance for Caregiving reports caregivers spend, on average, 20.4 hours per week providing care. Those who live with their care recipient spend 39.3 hours per week caring for that person. Research shows that an estimated 17-35 percent of family caregivers view their health as fair to poor. Fatigue, flare-ups of medical conditions and less adherence to medical regimens are commonly found among caregivers. For some, financial hardships, time restrictions and reversal in roles within the family add to their strain. Anxiety, sadness, anger, resentment and other intense feelings are normal emotional reactions experienced by caregivers. At the same time, many family members and other loved ones report positive outcomes from their caregiving role: a deeper connection and commitment; clearer or reaffirmed priorities; a new awareness of strengths and capabilities; a discovery of who can be counted on; and a heightened ability to make meaning out of difficulty. Undoubtedly, the caregivers’ role is multifaceted and filled with both challenges and benefits.
Successful coping over the long haul as a caregiver requires an understanding of what does and does not work in each unique situation. Some commonly held beliefs about what to avoid include: trying to “do it all”; putting one’s head in the sand and pretending nothing has changed; pulling away from supports and becoming isolated; and not acknowledging feelings and reactions to changed circumstances. On the other hand, several coping approaches have been endorsed by caregivers as methods for handling the stress that is an unavoidable part of the caregiving role. They are far ranging and consist of such strategies as learning easy relaxation tools; seeking the support of those who matter the most; practice saying “no”; taking a long view of the experience; setting priorities for spending time and energy; managing critical self-talk; examining expectations (your own and others) realistically; letting go of the need for control at all times; and finding meaning in the caregiver experience.
For many, cancer has become a chronic illness and so caregivers must prepare and be sustained over the course of a marathon rather than a sprint. This requires relentless self-care in the midst of a multitude of demands. At Moffitt, several departments provide specialty services to ease the caregiver burden. Integrative Medicine offers a variety of stress reduction interventions including massage, gentle yoga, meditation and acupuncture. A Social Worker is a member of each clinical team and is available to counsel family members as they adjust to cancer in the family. Social Work also facilitates a weekly group for family and friends of cancer patients aimed at connecting caregivers with others who truly understand the shared experience of caring for a loved one with cancer. Arts In Medicine provides a calm refuge for patients and family members to tap into their creativity and desire for self-expression. Chaplaincy is available to support caregivers facing spiritual or existential crises. Finally, seeking inspiration from others who have traveled before leads to recommended readings:
Denholm, Diana B., The Caregiving Wife’s Handbook: Caring for Your Seriously Ill Husband, Caring for Yourself. Hunter House, 2012
Sheehy, Gail, Passages in Caregiving: Turning Chaos into Confidence. William Morrow, 2011
Caregiving poses many challenges and offers meaningful rewards for all who embark on its course. Through it all, knowing they are not alone and can reach out for help or guidance along the way will likely enhance how caregivers adapt to the trials and gifts encountered.