What Happens When ‘The Caregiver Needs a Caregiver’ in Cancer Care?

Sonja Atkins is used to taking care of people.

Atkins, now 56, lives in Florida and has worked as a nurse for many years. A breast cancer survivor, she has also served as a caregiver for multiple generations of her own family members.

“My mom was diagnosed in 2016 with lung cancer,” Atkins told CURE®. “And I cared for her up until she died in 2016.”

Sonja Atkins and her son, Ryan, the day before she started cancer treatment.

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 thousand dollars a month, and we weren't able to afford that. But, because of my background and knowing resources, I was able to arrange that for us through a grant program … so I was very grateful for my knowledge in the medical field that helped (with) that.

“It was also really scary. You know, I still remind my colleagues today that you know, for us, it's a day at work, but for people in the hospital, it's a life-changing event.”

Before Ryan died in 2018 at the age of 31, he underwent three craniotomies, radiation and multiple rounds of chemotherapy. He had an unlikely chemotherapy companion by his side after Sonja received a diagnosis of triple-negative breast cancer in 2017.

The hardest challenge, she says, was breaking the news to her grandchildren, now ages 18 and 8.

“They had just experienced me caring for (my mother) who died of cancer, and they knew the struggles that Ryan had,” Atkins said. “So, my biggest hurdle was telling them that not everyone dies when they have a cancer diagnosis. So, 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 with my mom dying and then Ryan's recurrence after recurrence. So, I was really scared but Ryan was a big supporter.”

Atkins found and gave peer support to others who had loved ones with cancer through the organization Imerman Angels. “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 that had breast cancer,” she said. “So, I was able to help and receive help from a lot of different people.”

She was also sure to make time for herself. She’s hiked on the Appalachian trail and traveled to Europe. She’s raising one of her grandchildren and, after undergoing treatment, has been more than five years without a recurrence of her cancer.

“I learned to live with no regrets,” she said. “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, at 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.

“So, I made sure I spent time with friends, even if they were just coming over to have dinner with me (or) with Ryan, or I made sure I had my own interests. 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 a something in the works, I already had a foundation that I was able to go to.”

“The caregiver needs a caregiver.”

That self-care strategy is consistent with the recommendation of Gregory Blake, a resident in counseling who serves on both 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 put a safe distance between you and them.

“If the lifeguard goes down, everybody goes down,” Blake explained. “And that is the premise to which I approach all caregiving, because every caregiver has to be totally aware of preserving 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 then, everything falls apart.”

Caregivers have to be especially vigilant, Blake noted, if they are navigating health issues of their own.

“They have to be very mindful to separate the two,” Blake said. “They can't let their cancer (and) the person they're caring for's cancer merge. There has to be proper care for both. So, in essence, I care for you, but yet I'm cared for as well.”

Blake has been on both sides of the cancer experience. He and his wife, Marilyn, lost an infant son, David, to leukemia in 1985, and Marilyn died of pancreatic cancer in December 2018, which was followed by Gregory receiving a diagnosis of lymphoma in March of 2019. (“Fortunately for me, it was caught very early,” he said. “But I went through the whole radiation protocol, the whole nine yards.”)

After spending 34 years as an institutional bond salesman on a Wall Street-style trading floor, Blake went back to school and pivoted to counseling after mentoring other individuals through their own experiences caring for loved ones with cancer.

Blake has advice for both a patient who is ill and a person who is serving as their caregiver while sick themselves — seek separate peer-to-peer supports and community connections.

“If faith is one place that they can find solace, immediately, it's a strong one,” Blake said. “If they have faith, their church can be a great source of support, because within a church community there are community groups, support groups, so that's built in, that's an easy one, that's a layup. If they're not a person of faith, there are support groups of many different kinds, and we are blessed with the fact that we can (connect virtually) now. So, it's those things that help you feel that normalcy again.”

In addition to forging personal connections, Blake recommended that caregivers be mindful of exercise and nutrition, connect with a palliative care team and remember to advocate for themselves as well as the other person they are caring for.

“If I'm the caregiver, yet I need caregiving too because I have cancer, I must find a caregiver, I must find an advocate who's advocating for me, because it's me — remember, it's separate,” 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.

"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."

“You can’t do this alone.”

Robyn Fine, a melanoma survivor whose brother, Jason, died of melanoma in 2015 at the age of 44, shared that mentality.

“You have to have a great support system, and you have to take care of yourself,” she said, “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, it's heartbreaking. So, you have to have that support, you have to have that therapy. Those relationships with other people that are going through this disease is so important, you have to make those connections.”

Fine recalled that growing up, she and her brother were “two peas in a pod,” spending their summers outdoors, sans sunscreen.

She was diagnosed with stage 1 melanoma in 2009, which was followed by an excision. The discovery of a lump in her left breast resulted in a diagnosis of stage 4 melanoma in the fall of 2014. Fine, who lives in Minnesota, sought treatment at the Mayo Clinic, and found that the cancer had spread to her back and her brain. Treatments including craniotomies, radiation, oral chemotherapy and immunotherapy followed.

In 2014 her brother, who was living in Arizona, 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. And he was married and lived in Arizona, and I was in Minnesota, and I was pretty well-versed in this disease by this time, and he was just really struggling in Arizona with the care. And so, I flew back and forth to Arizona, because he had a really rough time of it,” she said.

Fine described her brother, who was two years younger than her, as “a beast of a man” who’d competed in the 2013 CrossFit Games less than a year before receiving his diagnosis.

“I flew back and forth to help my sister-in-law take care of him, because none of the treatments worked for him that worked for me, and it was very hard on them,” she said. “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 care of him and take him back and forth to the hospital and care for him at his home, and also try to take care of myself.”

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

Fine has gone nine years without evidence of disease. Her brother died 11 months after receiving his diagnosis.

“I kept saying to my oncologist, ‘We have the same DNA, or similar. We should be responding.’ And he said, ‘You know what, melanoma doesn't work that way, unfortunately,’” she recalled. “And so, everything I did, he did, and more. And he died three days before his 45th birthday, on March 20, 2015, which has obviously impacted my life and my passion for educating and advocating for and helping people that have this new diagnosis."

Fine began volunteering with the Melanoma Research Foundation in 2014 and is now involved in peer-to-peer support through Imerman Angels.

“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 said.

For more news on cancer updates, research and education, don’t forget to subscribe to CURE®’s newsletters here.