What Happens When the Cancer Caregiver Needs a Caregiver?

Growing up, Robyn Fine and her younger brother, Jason Fine, were “two peas in a pod,” spending their summers outdoors, sans sunscreen, she recalls.

Robyn Fine received a diagnosis of stage 1 melanoma in 2009, followed by an excision.

The discovery of a lump in her left breast led to a diagnosis of stage 4 melanoma in the fall of 2012. She sought treatment at Minnesota’s Mayo Clinic and found that cancer had spread to her back and brain. Treatment with craniotomies, radiation, oral chemotherapy and immunotherapy followed.

In 2014, Jason Fine visited and mentioned a lump under his armpit that doctors had attributed to an infection.

“I was on one of my last therapies, the oral chemotherapy for brain tumors, and my brother got this devastating news that he had stage 4 melanoma,” Robyn Fine says.

After Jason received his diagnosis, Robyn flew between her home in Minnesota and his home in Arizona to assist in her brother’s care.

“I flew back and forth to help my sister-in-law take care of him, because none of the treatments worked for him that had worked for me, and it was very hard on them. And his metastasis kept spreading, no matter what treatment he received. It kept spreading, and it was really hard to watch him deteriorate ... and take him back and forth to the hospital and care for him at his home and also try to take care of myself,” she says.

During the experience, Robyn Fine says her self-care, mostly regarding her mental state, took a hit, but she was able to see her oncologist when necessary and stayed in contact with her care team while in Arizona.

“We know from the literature that (caregivers) are often reporting really high levels of stress, distress and anxiety,” says Christine Vinci of the department of health outcomes and behavior at the Moffitt Cancer Center in Tampa. “In fact, in some groups of cancer caregivers, they report higher levels of stress than the patients themselves.”

Vinci is the principal investigator of COMPASS, a study funded by the National Cancer Institute that is currently recruiting caregivers of patients who receive bone marrow transplants. Vinci and her colleagues are evaluating the efficacy of a six-week mindfulness-based stress management program for caregivers when compared to both a healthy living intervention that promotes caregiver self-care and treatment as usual.

“(Often), for the caregivers, support groups are available, but otherwise there is not a lot directly offered to them,” Vinci says. “And they usually don’t have a lot of time to attend these groups that are scheduled at a specific time during the week. We’re actually delivering our intervention one-on-one based on the caregiver’s schedule. We’re looking to see if this mindfulness-based intervention actually helps support caregivers more than if they weren’t receiving anything like this at all.”

Robyn Fine says, “You have to have a great support system, and you have to take care of yourself because it’s draining, it’s heartbreaking, it’s emotional, it’s mentally debilitating. It’s heartbreaking to have gone through the suffering that I went through on my own and to know that my loved one was going through that and worse. So, you have to have that support, you have to have that therapy. Those relationships with other people that are going through this disease are so important; you have to make those connections.”

Robyn Fine has gone 10 years without evidence of disease. Her brother died in 2015 from melanoma, 11 months after receiving his diagnosis.

In 2014, she began volunteering with the Melanoma Research Foundation and is involved in peer-to-peer support through Imerman Angels, a nonprofit organization for patients with cancer and caregivers. Robyn is also the education lead for Connect Melanoma, a nonprofit group that educates about melanoma and advocates for melanoma research funding.

“As a mentor, as a support person, I still have to take care of myself, and I’m so glad to be able to support others to mentor them through this diagnosis. Because you can’t do this alone,” she says.

'This Is Not the Time to Be Stoic'

Approximately 1 in 3 adults in the United States serves as an informal or family caregiver, according to the Mayo Clinic, which cautions that the depression and anxiety, as well as lack of sleep, physical activity and balanced diet often experienced by caregivers can increase risk of health conditions such as heart disease and diabetes.

“All of our basic needs, like sleep, hydration, good nutrition, being physically active, even if brief and not be overly sedentary — those are the key things” for caregivers to recognize in the interests of their own health, according to Erin Kent, associate professor and associate chair in the department of health policy and management at the University of North Carolina (UNC) Gillings School of Global Public Health in Chapel Hill.

“Caregiving itself is a stressor because there (are) so many unexpected (elements),” says Kent, who also runs the Caregiving Collaboratory at UNC and is a member of the North Carolina Serious Illness Coalition’s Caregiving Collaborative.

“We put so much expectation and responsibility on the shoulders of (caregivers) ... (and) that is why the caregiver themselves should be treated as someone who is essential to the care of that care recipient, but also someone who is at risk for becoming overwhelmed or becoming so burdened to the point of exhaustion or being sick them- selves,” Kent says.

To avoid burnout, the American Cancer Society suggests enlisting backup caregivers and looking into short-term relief known as respite care, which can include in-home care, adult care centers or other facilities.

“This is a time not to be stoic and not to be thinking that you can take it all on,” Kent says. “I think this is a time to call on networks of friends and family members (who) maybe want to help but don’t know how to, by trying to even deputize someone to be the information disseminator. And sometimes if you have one trusted friend, (they) can be the person to organize a meal delivery or care communication website, I think that’s really critical for family members in this situation, especially if both people are sick.”

Cancer centers are becoming increasingly attuned to family members’ needs, with many facilities having patient and family resource centers, Kent says.

“We have a support group in our cancer center just for caregivers that meets weekly, and we have additional resources (available) that way,” Kent says. “So fortunately or unfortunately, depending (on how you look at it), one has to be somewhat of a squeaky wheel and make it known that this is a hard time so that the problems don’t continue to get worse.”

'I Learned to Live With No Regrets'

Sonja Atkins is used to taking care of people.

Atkins, 56, lives in Florida and has worked as a nurse for many years. She also has served as a cancer caregiver for multiple generations of her family members.

“My mom was diagnosed in 2016 with lung cancer,” Atkins says. “And I cared for her up until she died (later that year).”

At the time, Atkins was already caring for her son, Ryan, whose cancer journey began when a headache led to the discovery of a brain tumor in 2011.

“I’m glad I was a nurse and have a lot of experience with, of course, things medical, but also resources and stuff like that,” Atkins said. “Because one of his medications was a couple of thousand dollars a month, and we (couldn’t) afford that. But because of my background and knowing resources, I was able to arrange that for us through a grant program.”

Ryan, a father of two whose children are now 18 and 8, had an unlikely chemotherapy companion after Sonja received a diagnosis of triple-negative breast cancer in 2017.

“When I got the diagnosis, the hardest thing, I think, was telling my grandchild who was living with me at the time,” she says.

“They had just experienced me caring for (my mother) who died of cancer, and they knew the struggles that Ryan had. So my biggest hurdle was telling them that not everyone dies when they have a cancer diagnosis. After that, it was scary. I had never thought about my own death or the possibility that I could have a disease that killed me, and then I had the experience of my mom dying and then Ryan’s recurrence after recurrence. I was really scared, but Ryan was a big supporter.”

Ryan underwent three craniotomies, radiation and multiple rounds of chemotherapy before he died in 2018 at the age of 31.

Like Fine, Atkins found and gave peer support to others who had loved ones with cancer through Imerman Angels, first being mentored by a woman whose daughter also had a brain tumor and has since passed away.

“I was able to mentor a couple of people whose children had either brain tumors or cancer and be with them through their journey of their child dying, and I had a couple of mentors (who) had breast cancer,” she says.

She was also sure to make time for herself. She’s hiked on the Appalachian Trail and traveled to Europe. After undergoing treatment, she has had more than five years without a recurrence of her cancer.

“I learned to live with no regrets,” she says. “And that really helped with my grieving process because I didn’t have any regrets. I didn’t leave anything on the table with Ryan. I did everything I knew how to do for him, but also when he was dying, (in) the end, I made sure that I spent time with friends (and) had my own life because I didn’t want to get to the end of that journey and (have) Ryan be gone and I not have a life and just be totally lost.

“I was taking pottery classes and art classes and just doing things that supported me so that I could take care of Ryan. And those were huge after Ryan died because I already had something in the works, I already had a foundation that I was able to go to.”

'The Caregiver Needs a Caregiver'

Attention to self-care is consistent with the recommendations of Gregory Blake, a resident in counseling on the board of trustees and the advisory board for Cancer Hope Network. It’s akin to the lifesaving guidance he taught to Boy Scouts for years: When a drowning victim is trying to climb on top of you, it’s necessary to first put a safe distance between you and them before you can try to help.

“If the lifeguard goes down, everybody goes down,” Blake explains. “And that is the premise to which I approach all caregiving.

“Every caregiver has to be totally aware of their limits and preserve themselves. ... In the cancer milieu, I cannot take care of the person I’m caring for if I’ve allowed myself to become depleted because nobody wins and everything falls apart.”

Blake has been on both sides of the cancer experience. He and his wife, Marilyn, lost their infant son, David, to leukemia in 1985, and Marilyn died of pancreatic cancer in 2018. Gregory received a diagnosis of lymphoma in 2019, which was caught early and treated immediately.

“If faith is one place that they can find solace, immediately, it’s a strong one. Their church or place of worship can be a great source of support, because ... there are community groups, support groups,” Blake says. “If they’re not a person of faith, there are many other kinds of support groups. We are also blessed with the fact that we can connect virtually now. So, look for those things that help you feel that normalcy again.”

Along with forging personal connections, Blake recommends that caregivers be mindful of connecting with a palliative care team while advocating for themselves and the person they are caring for.

“If I’m the caregiver, yet I need caregiving too because I have cancer, I must find a caregiver who will advocate for me too,” Blake said. “I’m advocating for him, (but) who’s advocating for me? Because both of you are not going to go to the same oncologist, you’re not going to go to the same centers, you are on different cancer journeys.

“And so the caregiver needs a caregiver, in a way, and sometimes they don’t see that. Often they think they are fine, that they’ve got this, but all too often that’s just not the case.”

Blake advises patients and their caregivers who are also sick to seek separate peer-to-peer support and community connections.

“If faith is one place that they can find solace, immediately, it’s a strong one. Their church or place of worship can be a great source of support, because ... there are community groups, support groups,” Blake says. “If they’re not a person of faith, there are many other kinds of support groups. We are also blessed with the fact that we can connect virtually now. So, look for those things that help you feel that normalcy again.”

Along with forging personal connections, Blake recommends that caregivers be mindful of connecting with a palliative care team while advocating for themselves and the person they are caring for.

“If I’m the caregiver, yet I need caregiving too because I have cancer, I must find a caregiver who will advocate for me too,” Blake said. “I’m advocating for him, (but) who’s advocating for me? Because both of you are not going to go to the same oncologist, you’re not going to go to the same centers, you are on different cancer journeys.

“And so the caregiver needs a caregiver, in a way, and sometimes they don’t see that. Often they think they are fine, that they’ve got this, but all too often that’s just not
the case.”

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