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November is National Family Caregiver Month
Shay Greenwood, a wife and mother of five, said she was exhausted and carrying a heavy burden. “He did everything for everyone,” Greenwood said. “I had no energy at all.”
When her husband’s back problems worsened, she didn’t have the time or ability to take him to the hospital that day for an MRI and other tests. “I just thought they were going to tell him he needed back surgery,” Greenwood recalled. But during that visit, her husband was diagnosed with stage four prostate cancer that had spread to his spine. “The burden I was carrying just disappeared,” he remembers. “Suddenly there was nothing more important than that.”
Greenwood dedicated herself to caring for her husband as he underwent 25 rounds of radiation to his spine and then began chemotherapy. “A friend came to the hospital and told me to take care of myself too because I could get sick too,” Greenwood said. “I didn’t understand that at first, that if I didn’t take care of myself, I couldn’t take care of anyone else.”
Greenwood leaned on her faith and community to help her family during her husband’s treatments, which led to his cancer going into remission. “Having to ask for help is incredibly humiliating,” Greenwood said. “But you can’t handle this process alone.”
The prostate, a small gland beneath the bladder, produces semen. Prostate cancer is one of the most common cancers in men and the risk increases with age.
Psychologist Marni Amselem, Ph.D., said working as a team is crucial during treatment. “Recognize up front that this can be stressful for anyone who cares about the patient,” Amselem said. “Sometimes women take on the role of caregiver but refuse to identify with that role.” This can pose a risk to your mental health. “Any medical crisis has a cumulative impact on your daily life. The intensity of what is happening may change, but it is OK to recognize this as a disruption.”
Disorders are life-changing, said Vanessa Walker, a patient rights advocate and founding director of Women’s Health Advocates. Walker advises caregivers to create an environment where it’s okay for things to be complicated and uncomfortable. “They’re angry about cancer,” Walker said. “It’s okay not to get everything right from the start. It’s better to do it than to do it completely right. Find ways to accept that. You don’t learn to defend rights or care for your partner overnight. You learn to care by caring, to help by helping, and to defend your partner’s rights by defending them.”
Depending on the stage and treatment of cancer, a person’s care can have devastating effects, said psychiatrist Nicole Christian-Brathwaite, MD. Christian-Brathwaite says caregivers often feel guilty when they are constantly separated from the person they are caring for, especially when helping with difficult side effects such as urinary incontinence, bowel problems or erectile dysfunction. The side effects of treatment can have a significant impact on self-esteem, and when the ego is affected, frustration ensues.
Christian-Brathwaite recommends seeking help immediately if caregivers notice signs of burnout such as fatigue, sleep disorders, poor frustration tolerance, lower work performance and productivity, and especially depressive and dangerous thoughts.
Therapies can be helpful for caregivers to set boundaries and priorities and ensure that caring for a person becomes a part of a person’s life rather than completely consuming it. Additionally, Christian-Brathwaite added that “exercise is really important. It sounds like a small thing, but it’s very important.”
Although caregivers feel embarrassed when they hear the word “self-care” or view self-care as a low priority, Amsellem, Walker and Christian-Brathwaite say it’s the best way for caregivers to help couples with prostate cancer. “Self-care is an act of solidarity,” said Christian-Brathwaite.
“It seems counterintuitive, but if you don’t figure out how to incorporate self-care — whether you like that word or not — you’re going to burn out and it’s going to impact the person you love,” Walker said.
Self-care doesn’t necessarily include a visit to the spa. “You may not know what self-care means to you,” Walker said. But caring for a partner with prostate cancer means that “you need to start thinking about your own self-care formula. Integrating someone else’s routine won’t be effective, and what may work for you today may not work for you in the future. Ask yourself, ‘What do I need today to be present for myself and the people I love?’ Think about simple things. Maybe it’s 10 minutes outside in a chair with the sun on your face. Maybe it’s a shower or a glass of wine. Tomorrow could be something different.
You don’t have to do it alone. “Ask for help,” Walker said. “If you can afford therapy, great. Or use your friends, spiritual community, or medical team. Asking for help is one of the most important things we can do for ourselves. Women aren’t always good at it, but when we ask for help, we model this healthy behavior for our families, too.”
Amsellem strongly recommends seeking support from other caregivers who are in a similar situation. “Many people don’t even realize how important it is to know that they are not alone,” Amselem said. She recommended caregivers talk to their medical teams about local resources and search online for national support networks.
Recognizing the pain that prostate cancer causes can be an effective form of self-care. “It takes a lot of energy to deal with pain,” Walker said. “You and your partner are grieving that you no longer have the life you once had. Life will never be the same. Give yourself space and grace to recognize that. Self-care means doing what you can and not stressing about what you can’t do. Caring for someone is hard and cancer is terrible. Be kind to yourself and keep hope, even if it’s hard to have it right now.”
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This educational resource was created with support from Bayer and Merck.
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