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November is National Family Caregiver Month.
Shay Greenwood, a wife and mother of five, said she was exhausted and had a pretty big chip on her shoulder. “I did everything for everyone,” Greenwood said. “I was exhausted.”
When her husband’s back problems worsened, she didn’t have the time or capacity to take him to the hospital that day for an MRI and other tests. “I thought they would just tell him he needed back surgery,” Greenwood recalled. But at that appointment, her husband was diagnosed with stage four prostate cancer that had spread to his spine. “The chip on my shoulder just went away,” she remembers. “Suddenly nothing else mattered.”
Greenwood devoted herself to intensive care as her husband underwent 25 rounds of radiation to his spine and then began chemotherapy. “A friend came to the hospital and told me I needed to take care of myself 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 turned to her faith and community to help her family during her husband’s treatments that led to remission of his cancer. “It’s very humbling to have to ask for help,” Greenwood said. “But you can’t take this journey in isolation.”
The prostate, a small gland located 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 teamwork is key during treatment. “Know from the outset that this can take a toll on anyone who cares about the patient,” Amselem said. “Sometimes women take on the role of caregiver but don’t accept the label.” This can pose a risk to their mental health. “Any health crisis will have an impact on daily life, and it will do so cumulatively. The intensity of events may change, but it is OK to recognize that it is a disruption.”
Disruptions will make life chaotic, said Vanessa Walker, patient advocate and founding director of Women’s Health Advocates. Walker advises nurses to create an environment where it’s okay for things to be complicated and uncomfortable. “They’re just as angry about the cancer as she is,” Walker said. “Allow yourself not to do it in the best way at first. Getting it done is better than doing it 100% right. Find ways to be okay with that. You don’t learn to be an advocate or care partner overnight. You learn to care by caring, to help by helping, to advocate for something by advocating.”
Depending on the stage and treatment of the cancer, care can be all-consuming, says psychiatrist Nicole Christian-Brathwaite. Christian-Brathwaite says caregivers often struggle with guilt when giving up, especially when helping with difficult side effects such as urinary incontinence, bowel problems or erectile dysfunction. Side effects of treatment can have a significant impact on self-esteem issues, and when ego is involved, frustration is bound to ensue.
Christian-Brathwaite recommends seeking help immediately if caregivers notice signs of burnout, such as fatigue, difficulty sleeping, poor frustration tolerance, reduced work productivity and performance, and especially depressive and insecure thoughts.
Therapy can help caregivers set boundaries and prioritize to ensure that caregiving becomes part, but not everything, of life. Christian-Brathwaite also added: “Sport is really important. It sounds like a small thing, but it’s so important.”
Although caregivers may cringe at the word “self-care” or dismiss it as a low priority, Amsellem, Walker and Christian-Brathwaite all ranked it as the best way to support their partners with prostate cancer. “Self-care is selfless,” 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 have an impact on the person you love,” Walker said.
Self-care doesn’t necessarily have to mean spa treatments. “You may not even know what self-care means to you,” Walker said. But caring for a partner with prostate cancer means: “You need to start thinking about your own self-care equation. Adopting someone else’s routine doesn’t work, and what works for you today may not work for you tomorrow. Ask yourself, ‘What do I need today to be there for myself and the people I love?’ Keep it simple. 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 different.”
You don’t have to do it alone. “Ask for help,” Walker said. “If you can afford a therapist, that’s great. Or rely on your friends, your faith community, or your medical team. Asking for help is one of the most powerful things we can do for ourselves. Women aren’t always good at it, but when we ask for help, we model these healthy behaviors for our families, too.”
Amsellem strongly recommends seeking peer support from other caregivers. “A lot of people don’t even realize how powerful it is because they know they’re not alone,” Amsellem said. She recommended caregivers reach out to their healthcare team for local resources and search online for national support networks.
Recognizing the grief that prostate cancer causes can be an effective form of self-care. “It takes a lot of energy to avoid grief,” Walker said. “You and your partner are grieving the life you once had. Life will never be the same. Give yourself the space and grace to acknowledge that. Self-care is about doing what you can and not dwelling on what you can’t do. Caregiving is hard and cancer sucks. Be kind to yourself and look in the direction of hope, even if it’s over the horizon today.”
resources
Zero prostate cancer
This educational resource was created with support from Bayer and Merck.
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