by Ann Kuglin Jones, PhD
Forty-four years ago, I met a couple in their sixties who I will call Allen and Jean. Allen had cancer, and Jean was his care partner. Back in those days, cancer treatment was surgery, chemotherapy, and/or radiation and a patient could be admitted to the hospital for weeks at a time. Imagine the patient who could ambulate easily and was prescribed radiation treatments for 6 to 8 weeks. Remember no treatments on weekends, but insurance would pay for eight consecutive weeks in the hospital because the oncologist said so. The nursing staff on the oncology unit had ample time to become acquainted with Allen; almost like becoming extended members of the family.
Allen was in and out of the hospital multiple times, receiving treatment for over a year. In that year, Allen spent over two hundred days as an inpatient, and those days in the hospital became more frequent as Allen came closer to the end of his cancer journey. Jean visited Allen from early morning to late evening. They had seven adult children who were attentive and loving but also scattered across the country with their own lives and careers making it difficult to visit regularly.
One’s first impression may assume this story is centered on Allen. I ask you to switch your focus to Jean, Allen’s wife and bride of almost 46 years. Jean drove herself 50 miles a day from their farm to the middle of a very busy city hospital in nerve-wracking traffic to be by her husband’s side every day. What we noticed about Jean was that she was always there, was the best dressed woman with the coolest jewelry, and had the bubbliest smile but seldom said much.
I happened to be working the one cold winter night Allen succumbed to his disease. Jean always helped with Allen’s care. For the last time, she lovingly helped me clean his body and prepare him for transport. She was silent and maintained that same loving smile on her face without missing a beat. After we finished, I left the room to complete some task and upon my return, she was gone. Just gone.
A few hours later, I wrapped up my shift and proceeded to pass the waiting room outside the oncology unit and saw Jean crying and alone. I abruptly stopped and went over to Jean to see if I could provide any comfort. Maybe for the first time, she let it go. I proceeded to listen to the remarkable story of a woman who had been unacknowledged, unheard, and unseen for over a year, if not longer. No one on the cancer team really knew anything about Jean or her story, including me. Who knew that cancer care partners suffered, felt pain, had needs that went unmet, experienced anxiety, knew loss, and would be forever changed because of a six-letter word we know as cancer. Those who care for individuals diagnosed with cancer rarely share any part of their caregiving story out of respect for not overshadowing the cancer survivor. It was because of Jean that I began wondering that night, forty-four years ago: what about care partners? Who takes care of them?
Welcome to this new space on Wings of Hope’s website entitled the Care Partner Corner! It is long overdue and has been waiting on me to launch this new monthly offering. Since joining the staff, one goal has been to strengthen, expand, and develop new programs/resources that support care partners of cancer survivors. Many know that last year I finished my formal studies and completed ten years of research that focused on caregiving and how care partners experience their own cancer journeys. The findings were illuminating and point to just how much work is needed in bringing awareness to the importance of caregiving, offering the kind of support that care partners find beneficial, and normalizing the cancer experience for care partners so that the stigma and silent suffering might dissipate.
Caregiving has been researched in depth for many years; most notably in the area of dementia and cognitive decline. Cancer-specific caregiving research has gained more attention in recent years. Thus, it is perplexing to me how support programming and services targeted toward cancer care partners of cancer patients/survivors are so lacking. By now, it should be standard of care from the moment a cancer diagnosis is made that care partners have access to information, caregiver training, emotional/social support, and the resources that help them care for the survivor. For the good news, it was announced earlier this year that Mount Sinai in New York has established the new Center for Caregiving and hired Allison Applebaum to take the lead. She is a leader in the field of psycho-oncology and clinically works with caregivers of patients with cancer. I am reading about some of her work now, so you can count on hearing more about her and her work in the future.
I hope you follow along as Wings of Hope takes a bigger splash and aims to offer more support to care partners at the same time as we continue to enrich our services to cancer patients and survivors. Intuitively, we knowd and research has proven that how well the cancer patient/survivor thrives can be/is dependent upon how well the physical, emotional, mental, and spiritual health status of the care partner is.
I and all of us at Wings want to always hear your ideas, opinions, and suggestions. If you have a question or a topic about caregiving you would like addressed, drop me a line. If you have an idea of how Wings can better serve the cancer community, drop us a line. And if you just want to pull up a chair in the garden room and have a discussion over coffee, drop me a line or give me a call. That is why we exist! Email me at ann@wingsofhope.org or give the office a call at 712-325-8970.