While many cancer patients report feeling isolated and alone in their diagnoses, often cancer affects the entire family. Loving caregivers experience many of the same emotions—anxiety, stress, fatigue, depression—as patients, combined with a sense of helplessness and an increase in responsibilities that makes cancer a family affair. Although not quite a full Ginger Rodgers experience (everything Fred Astaire does but backwards and in high heels) the psychological strain of caring for a cancer patient is very real. As 27-year old Mary said when she contemplated telling her parents about her lymphoma diagnosis, “I knew that everything I felt or expressed, my mom would feel twice as much. I sensed I had to hold back some of my emotion.”
How loving caregivers, be they family or friends, respond to the need for care is influenced by cultural values, personal beliefs, personalities and pre-existing relationships. So there is considerable variation in approach and emotional effect. But, as many as 68% of caregivers have unmet emotional needs 2 months after the patient’s diagnosis, and that need persists for years.While patients usually feel justified in their emotions, caregivers may experience guilt that their own psychological response, combined with increased physical and temporal burdens, interferes with their ability to be more supportive.
The Burden of Care
Most caregivers find their new role arduous. Close to two-thirds of loving caregivers report a heavy load when supporting a cancer patient at home, spending as much as 33 hours a week in this role, in addition to their regular responsibilities.And their roles are varied, often requiring them to do things they have never done before—from the very intimate (changing surgical drains, assisting with bathing and providing other physical support) to the mundane (extra household chores, childcare and communication.) In addition, they are likely to be monitoring the patient’s pain, side effects and needs, and making themselves available for emotional support. As Andrea explained, “I gave up everything that I did, drove him to see oncologists, neurologists, sat in hospitals and doctors’ offices every single day for hours, pushed his wheel chair when he couldn’t walk. I didn’t complain, it’s just what you do.”
While the time commitment and emotional burdens vary by type of cancer, severity and phase in the process, for many caregivers, the sudden increase in responsibilities and the significant burden at the outset—especially if treatment starts with surgery—creates measurable stress at a time when they are adjusting to their own new reality. As one caregiver said when her husband was diagnosed with stage 4 melanoma, “It was devastating. We were in the same space of pain and stupor. But he is my rock so, it threw me. I feared for his death and worried how I would survive without him.”
In fact, anxiety and depression among loving caregivers are common—47% report anxiety and 42% experience depression.And, not surprisingly, quality of life takes a hit. In addition to concern for the patient, caregivers may also be worried about paying for treatment, dealing with insurance, meeting work obligations and sustaining a household that refuses to run itself. By the time a patient enters the palliative, hospice and end of life phase, the psychological burden on the caregiver is often greater than on the patient.
One of the side effects of this caregiving burden is that family roles often are destabilized, and roles may be reversed. Debbie had to convince her husband to teach her how to do online banking when his cancer progressed, and he was unable to continue taking care of household finances. Thomas had to enlist a fleet of friends and professionals to help him organize a busy household when his wife became unable to do so. “I never realized how much she did to keep things running smoothly,” he said, “until she didn’t.”
And sometimes, when they do get better, it can be equally destabilizing as the supportive caregiver once again relinquishes responsibility and steps back into a smaller role. As Ira said, “I got used to doing everything my way, and now she wants to chime in on everything. It’s not easy to go back to the way things used to be.”
Even children can feel a need to step up and take a responsible role in the household, often to the detriment of their own innocence and emotional stability. “When I was in the hospital preparing for a bone marrow transplant, my wife and I were so focused on my care that my elder daughter thought she had to be an adult at age 11 and help her grandparents run the family,” said Param, a leukemia patient. “I can now see some of her emotions around this; it was a price we paid.”
Impatient with Patients
As the cancer ordeal progresses, the caregiving burden increases, and the ongoing stress continues to build. Everyone just wants to return to normal, even if that is not in the cards. It is hard for loving caregivers to selflessly give while their own fears mount. How much longer will I need to carry this burden? Will my spouse survive? When will I get my life back? Sometimes caregivers lose their patience. As Jenny reported hearing from her loving husband one day, “What the fuck, why can’t you just get better already?”
It’s not unusual for the burden of caregiving to interrupt even the best relationships between couples. In fact, 65% of couples report relationship issuesdue to the challenges inherent to the patient/caregiver relationship. Marian struggled with confronting her mortality when she was diagnosed with stage 3 ovarian cancer. “I wanted to talk to my husband about it, and he was not unsympathetic, but he was dealing with the same fear,” she said. “It was hard to have the conversation.” Or, as Eric put it, “I don’t think my wife liked the version of her husband that she had while I was going through cancer.”
And when patients are unable or unwilling to share their deepest fears with a loving caregiver, it can create a distance in the relationship that may be hard to repair, as Steve learned with his first cancer. “I destroyed my marriage, pushed my wife away and didn’t want to accept anyone’s support,” he said. “It’s been hard for me to accept help this second time around, but I realize now that I wouldn’t have made it without the loving support of my family.”
Getting Help to Give Help
What can caregivers do to help themselves and the patients they love get through the ordeal? The most important thing is self-care. You can’t meet the needs of a patient if you fall apart, so, as they say on an airplane, but the oxygen mask on yourself first.
- Make time for yourself. Give yourself a break from the patient and the stress. Walk the dog. Go for a run. Take a bath with a glass of wine. Watch a video. Read a book. It will refresh you.
- Laugh and sleep. Both have dramatic effects on brain chemistry. Getting a good night’s rest and having a full-on belly laugh can significantly reduce stress.
- Be social. Spending time with friends and sharing your emotions with others can give you the strength to continue giving support. Not only is it good to know your friends are there for you, but socializing releases neurotransmitters that make us feel good and help us be more resilient.
- Try meditation or other mindfulness practices. Learning to let go of your emotions, to acknowledge and release the anxiety and stress, can be restorative, and can help ensure your emotions don’t interfere with how you care for the patient you love.
- Find support online or in person. Caregiver support groups, one-on-one counseling and online networks can provide insights and skills that will help you better understand the patient’s needs and strengthen your ability to meet them. Check with your local hospital/cancer center for caregiver support options in your community.
American Cancer Society – Caregivers and Family
National Cancer Institute – Support for Caregivers of Cancer Patients
Cancer Support Community/Gilda’s Club – Becoming a Caregiver
Cancer.Net – Caring for a Loved One
Cancercare – Counseling and Support Groups
Cancer Hope Network – Peer support mentors for caregivers
Romito, et al, Informal Caregiving for Cancer Patients, Cancer, 2013 June 1;119(0 11). doi:10.1002/cncr.28057
Williams, AL and McCorkle, R, Cancer Family Caregivers During Palliative, Hospice and Bereavement Phases, Palliative Support Care, Sep;9(3):315-25. doi: 10.1017/S1478951511000265
Lewis, FM, Family’s Stuck Points in Adjusting to Cancer, Psycho-oncology, Second Edition, Oxford University Press, 2010.