Taking Time to Recognize Caregivers

In the United States, November is National Family Caregivers Month (NFCM). The theme for this year’s NFCM is “Caregiving Around the Clock,” a title that aptly summarizes yet still grossly understates the tremendous, time-consuming responsibilities borne by many informal caregivers. While I particularly want to highlight and thank caregivers in cancer, I know that almost all caregivers, including those caring for aging parents, persons with mental health challenges, neurodegenerative diseases, and a wide range of other chronic health conditions, have similar key jobs. By calling attention to caregiving in cancer, I hope this issue and our podcast capture the life stresses, fears, responsibilities, and possible solutions shared by all those who provide care in any context.

Full disclosure—I was completely unaware that NFCM even existed until a few months ago. For years, I have observed family members accompanying patients in our cancer center and throughout the hospital. I did not think much about the experience of the accompanying family members on these visits. My focus as a cancer researcher and diagnostic radiologist centered on understanding cancer biology, discovering better ways to diagnose and treat cancer, and translating those discoveries to patient care. If work in all those areas succeeded (completely ignoring the many false starts and years along the path), surely those advances would be enough to solve the problems faced by patients and their caregivers.

I came face-to-face with a new reality when I became a caregiver to a family member over the past 18 months. In doing so, I joined a not so very exclusive club. Estimates from the National Alliance for Caregiving emphasize the immense scope of caregiving in health and family care; 65.7 million Americans served as a family caregiver during the past year. This number represents 29% of the adult population in the United States, encompassing 31% of all households in the country. Approximately 6 million of these persons cared for someone with cancer. The numbers of people providing caregiving continues to rise dramatically from approximately 43.5 million in 2015 and 53 million in 2020. The average family caregiver spends about 25 hours a week on caregiving activities, and 25% of caregivers may devote over 40 hours per week. Caregiving typically is not a short-term commitment, as the average caregiver devotes about 4 years to this role. The average age of a caregiver is approximately 50 years, and one-third of caregivers are over 65 years old. Many older caregivers themselves may be in fair to poor health, and most caregivers reduce time spent on their own health care in service of the person for whom they care. However, caregiving does not fall solely on adults. Over 1 million Americans aged 8–18 years provide daily care for an adult relative. Responsibilities of caregiving fall disproportionately to women, who represent 75% of all family caregivers and spend up to 50% more time providing care than men. Estimates place the value of services provided by unpaid, informal family caregivers at over $500 billion dollars per year, which far exceeds the amount spent on paid home health care. These numbers are staggering and likely to grow, driven by factors including an aging population, shifts away from hospital-based care to outpatient, home-based health care, and increased costs of care facilities.

As a person with compulsive tendencies and many years of health care training and experience, I wanted to get an “A” in caregiving—as if caregiving represented an academic class with tests and grades. Of course, I expected to do this while continuing to work full time. My situation was like most family caregivers who add caregiving to a full- or part-time job. I soon learned that no class I had ever taken really prepared me for the multifaceted demands of caregiving. My caregiving responsibilities were quite modest as compared with many, as I provided only part-time daily assistance and could share responsibilities with other members of my immediate family. We set up a place for this family member to live near our home; managed finances; set up a new health care team, including begging some providers to add a new person to already full practices; helped with rehabilitation from a prior injury with life-threatening complications; picked up prescriptions and dispensed medicines on schedule; and kept the apartment stocked with essential personal care items. I scheduled appointments with primary care and specialist physicians, physical therapy, and dentists—arranging my work and overall life schedules to transport my family member to these visits and provide medical background information. I really appreciated the health care providers who spoke first and directly to my family member to get her input rather than just addressing me. As the person designated as health care and legal power of attorney, I often made the final treatment plan decisions for my family member. Each time, I wondered if I made the right decision to balance likelihood of benefit versus risk and suffering. Most importantly, I wanted to ensure that decisions respected the wishes of my family member. I had many sleep-deprived nights mentally rehashing health care decisions, wondering if I made the right call. We awaited outcomes of medical procedures and tests with considerable fear. We also experienced an ongoing sense of hypervigilance, trying to anticipate and prevent new medical problems and plan contingencies for when new problems happened. My family and I quickly realized that one of our major responsibilities centered on being encouraging, supportive cheerleaders for our family member’s physical and mental recovery and well-being. As much as possible, regardless of circumstances, we needed to provide smiles, a positive outlook, and love without showing the stresses and concerns of caregiving to our family member.

Despite my feeling of being overwhelmed by the challenges of caregiving, I realize how incredibly fortunate I am. I know that what I regarded as a busy day of caregiving would be a day off for many informal caregivers. I could adjust my short-term schedule to account for my caregiving duties. My laboratory team took on extra responsibilities to account for my in-person absences at different times throughout a day. Because of factors including less accommodating job situations, lack of paid family leave policies, and the effort and time duration of caregiving, many caregivers leave the workforce. According to the Rosalynn Carter Institute for Caregivers, approximately one-third of employees end up leaving a job at some point because of their caregiving obligations. For many such caregivers, leaving a job means losing health insurance and sacrificing their own short-term and long-term financial stability. Approximately 20%–40% of caregivers and their families face financial hardships, particularly for persons in lower income families providing care for someone with cancer. Caregivers also may have to forego promotions with associated pay increases if a promotion requires moving to a new location and/or having less flexibility in work schedule. For men who become caregivers, they commonly decrease their work hours gradually before eventually leaving the workforce, and men generally do not return to work. Women tend to leave work more abruptly and then return after approximately 2 years on average, but they generally return only part time with lower wages (1). Caregiving also leads to increased absenteeism and “presenteeism”—the loss of productivity when a worker is not fully engaged in the workplace. While challenging to quantify, losses from absenteeism and presenteeism likely exceed $50 billion annually and will continue to increase.

The experiences and life stresses faced by my family and me are common to caregivers in cancer and other diseases. Depression and anxiety are frighteningly common among informal caregivers in cancer, occurring in 40%–50% (2). The United States National Cancer Institute notes that approximately 20% of caregivers report adverse effects on their own physical health, and many caregivers forego their own health care visits and self-care activities. Caregiving fatigue, or burnout, is an ongoing risk and concern for caregivers. Caregiving fatigue can make one less compassionate and understanding, leading to feelings of guilt and poorer outcomes for the family member and caregiver. I am thankful that I could share the responsibilities of caregiving with other family members, which reduced feelings of caregiving fatigue for all of us. I know that not everyone has the luxury of a team approach and the opportunity to take a break.

The caregiving experience with my family member ended the way far too many do—with the death of this person in whom my family and I invested so much time and love. Just as I felt unprepared for the challenges of caregiving, I was equally unprepared for the grief that came from the sudden end of this caregiving experience. The Ontario Canada Caregiver Association lists themes for grieving caregivers that mirror those of many organizations: accept the range of feelings one experiences, including sadness, regret, and relief; be patient with oneself; do not compare oneself to others in their grieving experiences; accept limits; and find ways to relieve the tensions of each day. These are great pieces of advice that I find hard to implement daily. Despite assurances from many others that I did a great job as a caregiver, I still wonder what I could and should have done better. There are many situations that, in retrospect, I wish I had handled differently. Did I find joy in every moment? My honest answer is no. Sometimes I pasted a smile on my face to hide my desire to scream, cry, or both. Recognizing that I am far from an expert in this area, my first advice to caregivers is to find or build a support group. Many hospitals and community organizations sponsor support groups for informal caregivers. Two of the administrators with whom I work are managing similar caregiving experiences, and we continue to share stories and encouragement. Second, try to find joy in the moment and treasure your time together, as hard as that may be on some occasions. You never know what moment is the last you will share together.

Beyond this editorial, we at Radiology: Imaging Cancer have two other presentations that address the challenges of caregiving and new programs to support caregivers in cancer. After learning of our intent to highlight NFCM in the November issue, Jennifer Michalek, MS, Associate Executive Director for Marketing and Communications at RSNA, contacted me to express her interest in contributing to the effort. Her editorial provides a thoughtful, personal reflection on caregiving in cancer that I am sure you will want to read. Additionally, Brandon Fields, MD, a member of the Radiology: Imaging Cancer Trainee Editorial Board, recorded a podcast interview with Allison Applebaum, PhD, a psycho-oncologist at Memorial Sloan Kettering Cancer Center in New York City. She founded and currently directs the Caregivers Clinic. This program provides support from the time of diagnosis through the grieving process. Her program is one of many such support programs recently developed that recognize the challenges of caregiving and support caregivers in their vital roles. Please tune in to this podcast to learn more about caregiving in cancer from a world expert in the field. I also encourage you to take time to thank caregivers you see during your workday; listen to their concerns; and work to improve support programs for the community of caregivers in cancer and other health care conditions.