They say, “Cancer is a full-time job.”
Of course that’s not exactly true, especially given advances in treatments, but it’s not far from the truth. There is a concept in healthcare called “burden of treatment” – the work of being a patient – and for cancer patients, it is a lot of work.
On New Year’s Day 2018, my 51-year old husband Kevin wrapped our family’s winter vacation with a few early morning ski runs before heading home to take down our Christmas tree and prep for work the next day. He didn’t mind leaving the mountain early as he planned to make time for lots of skiing that winter.
One month later, at the same resort, he said he didn’t feel well and stayed behind while I skied with our kids. When I returned to the lodge, I could see he was not well. He went to the hospital the next day and he didn’t come home for a month.
He was diagnosed with stage 2b pancreatic cancer and almost overnight, life, as he had known it, was overtaken by the burden of treatment. A diagnostic test led to pancreatitis, which led to an infection, which stressed his body and led to a heart attack. Eventually the infections cleared up and he grew stronger – strong enough to start chemotherapy and a new cycle of side effects and appointments and surprises.
While my husband was suddenly facing a whole new experience, I was not. I had played the role of primary caregiver for my mother, who died from ovarian cancer a few years earlier, and for my father who had Alzheimer’s and had died a few months earlier. In fact, I was in the midst of writing a book on how to balance caregiving along with career and family and now it looked like I was going to apply the lessons I had learned – again.
Fridays were clinic days – a nurse would take Kevin’s vital signs, then he’d meet with the doctor and they would assess and adjust the protocol as needed. Every other Friday, he went from the doctor’s office to the treatment area where he received his chemotherapy for a few hours and then went home where he finished the treatment via a pump he wore like a purse over his shoulder. On Sundays a visiting nurse would disconnect the pump, on Mondays he would sleep all day and on Tuesdays, he would go back to the clinic in need of IV fluids. In theory, he could go to work on Wednesdays and Thursdays – but there were always surprise symptoms and side effects and so he took a medical leave of absence so that he could focus on his health.
I, however, continued to work. Lucky for us, I worked from home and attended most client meetings via Zoom – a web conferencing service. Lucky for us, as a senior-level executive, I had earned my boss’ and clients’ trust. As a result, no one was paying attention to how or when I worked – just whether or not I delivered. Lucky for us, because my life, as I had known it, was overtaken by the burden of his treatment.
Cancer, you see, is also a full-time job for the family caregiver. Caregiving.org estimates cancer caregivers spend more than 40 hours per week caring for family and friends and adds, “The level of care required by the care recipient is a major factor that influences the caregiver's life and health effects.” Working a 40-hour-a-week paid job, I never had the time to count if I was spending an additional 40 hours caring for my husband. But the number doesn’t surprise me. I was his chauffer to, and his companion at, clinic and chemotherapy. I was his medical team’s eyes and ears outside of clinic – basically 6 days a week – and would determine each week if I should drag him back to the hospital post-chemo for fluids. I was at the pharmacy several times per week, sorted and administered 14 pills per day, flushed IV lines, cleaned wounds and changed dressings, stuck a needle in his arm weekly (and only once missed and watched the $6,000 medication drip onto the sofa – oops!), dealt with the insurance company, scheduled his appointments, and perhaps most importantly, played the role of coordinator across the many doctor and specialists he saw. “He was hospitalized on this date. He stopped taking that medicine on this date. He had his PICC line inserted on this date. His next scan is this date…” Cancer care is complex.
Sadly, my husband’s cancer experience was typical for pancreatic cancer – fast and cruel. He passed away 15 months post-diagnosis. My cancer caregiving experience, however, was atypical. Yes, it was stressful and heartbreaking and yes, it took its toll. And yes, I have many of my own doctor’s appointments to reschedule now that it’s over – caregivers aren’t so good at caring for themselves. But while the outcome was devastating, the process was not, and I believe that bodes well for my own well-being and future. And I believe that the factors that contributed to my having a positive caregiving experience, must be replicated for the estimated 2.8 million to 6.1 million adult individuals providing cancer care in the United States.
The National Cancer Institute tells us “family caregivers provide a complex array of support tasks that extend across physical, psychological, spiritual, and emotional domains.” This National Family Caregiver’s Month, we must commit to improving the outcomes, not just for our patients, but for their family caregivers too, lest they become the next round of patients.
Here are three key factors that helped me as a family caregiver:
While it felt like torture some days to work when all I wanted was to focus on my husband, workplace flexibility granted me the ability to stay employed during a time when many caregivers find they cannot. American businesses must find a way to make care and career compatible. Flexible hours, work from home, job sharing – these options are relatively low cost for the organizations that offer them and high impact for the employees who access them. Family caregivers, and particularly women, lose an average $324,044 in compensation due to caregiving. American businesses lose as much as $34 billion each year due to employees' caregiving. It doesn’t have to be that way.
Caring for my parents prior to my husband getting sick taught me how to navigate the medical system, how to advocate for a patient, and quite frankly, forced me out of my comfort zone so that I was not intimidated by giving injections, dressing wounds, and making critical decisions. My training may have been on-the-job, but at least I had it. Family caregivers are called on to perform complex medical tasks with little or no training and that needs to stop. We must demand education, training, and in-home support for caregivers.
My husband’s medical team was fantastic – and having interacted with many medical teams for many years on behalf of my parents, I believe I am qualified to make that evaluation. They recognized the burden of treatment, for both patient and caregiver, and they actively worked to reduce it. They were accessible via email and phone – allowing us to reduce the number of trips we made to the hospital, and reduce wait (and worry) times for answers and information. They coordinated across disciplines providing access to social work, palliative care, home-based care and more. In my many years of caregiving, I have seen a significant shift in how medical professional treat and work with family caregivers. But we can’t let up.
When doctors and nurses respect the role of a family caregiver and welcome them as a part of the care team, it gives them the confidence and the tools they must have to perform their critical roles. Of the 44 million caregivers in the U.S., an estimated 20 million family caregivers perform complex medical/nursing tasks, and with at least 60% of family caregivers also balancing paid work outside the home, can we demand anything less?
Liz O’Donnell is the author of Working Daughter: A Guide to Caring for Your Aging Parents While Making a Living. You can read more about Liz at Working Daughter