CURE emphasizes some of the most important caregiving news of 2023 in honor of National Family Caregiver’s Month.
This article dives into three caregivers who discuss their journeys with cancer experiences as well as being a caregiver for others.
Sonja Atkins, a caregiver and cancer survivor, discusses her experience with her own cancer diagnosis, alongside her profession as a caregiver towards her own mother. Atkins’s son also had experienced a cancer journey, after discovering a brain tumor.
Gregory Blake discusses his experience with working on the board of the Cancer Hope Network as a counselor. “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.” Blake was also diagnosed with lymphoma, lost his wife to pancreatic cancer and son to leukemia.
Robyn Fine, a peer to per support caregiver at Imerman Angels, was diagnosed with melanoma. Fine would fly back and forth to Arizona to take care of her brother who was diagnosed with melanoma in 2015. “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.
Recent research published in the Journal of the National Cancer Institute found that psychosocial distress was examined for patients with cancer, but not often for cancer caregivers.
Patient and caregiver distress screening and distress management strategies were evaluated. Results showed that only 16% of caregivers were screened for distress, while 92.5% of patients were screened for distress.
“We do need to better understand the unique barriers in community oncology settings that are preventing systematic screening for caregivers,” Chandylen Nightingale, assistant professor of social sciences and health policy at Wake Forest University School of Medicine and co-principal investigator of the study, said in a press release. “Our findings suggest that patient distress screening is widespread among community oncology clinics. However, very few are comprehensively engaging caregivers.”
Hospice can empower patients and benefit their quality of life, according to a recent article. Lori Marshall, a hospice nurse, discusses the importance of hospice conversations within the early stages of a cancer diagnosis.
“I think one of the best things we could do is start having the (hospice) conversation sooner,” Marshall, who has been a hospice nurse for nearly three decades, said in an interview with CURE®. “Not one person ever says, ‘I wish I hadn’t signed up so early.’ They always say, ‘I wish I had known sooner,’ because hospice provides a lot of emotional support. It pays for all the medications related to the diagnosis. So pain medicine, meds for nausea and vomiting, as well as medical supplies, are all covered under the hospice benefit.
Marshall expresses the impact on educating families about hospice and providing effective care for patients, alongside giving them recourses such as the Conversation Project and Five Wishes.
Cancer caregivers may experience decreased quality of life due to lack of loved one support and psychosocial needs, according to a recent study for caregivers. The study measured the impact that caregiving has on individuals’ quality of life, alongside the help needed and help received.
“We see that caregivers still do not receive needed support,but it’s especially related to their psychosocial needs and those of their patients,” Melissa F. Miller said. “One of the things that struck me was that our biggest met need … is around understanding the patient’s cancer and prognosis, managing symptoms and side effects and proving medical care. But where we see the greatest unmet need is on balancing caregiving with their work, life, family and managing their own negative feelings, guilt, anger, stress and taking care of their own mental and physical health.”
This study analyzed the importance of self-care for caregivers, allowing better care for themselves and their patients.
Mary Sansone, a contributor with CURE®, discusses the importance of caregivers throughout a cancer experience. When Sansone received a bone marrow transplant, caregivers, doctors and nurses not only made sure she was medically safe, but made sure to overwhelm her with love.
“Every now and again, fending for myself can be lonely. In isolation, my jump-thinking pokes me with paranoia. But I have resources when in need of nurturing. I use them,” Sansone noted.
When patients with cancer experience triggers and emotional distress after leaving the hospital, connecting with support groups, therapies and family becomes important. Making connections can improve one’s well-being and sense of community. You are never alone.
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