Editor’s Note: The John A. Hartford Foundation is collaborating with ASA to advance equity in aging by supporting ASA RISE, a 20-week social justice and leadership program for rising leaders of color in aging, and via the development and dissemination of equity-related, partnership-based thought leadership through ASA’s Generations platform. This blog post is part of that series.
The word “care” is used loosely across the field of aging and in healthcare settings—childcare, healthcare, care provider, selfcare, care planning, in-home care agency, caregiver, care receiver, care programs, care facility, family care services, geriatric care and elderly care. But what does care mean? This question is often asked of young and upcoming healthcare professionals. How will their definition of care define how they treat those needing care? The act of caring is a multifaceted experience requiring as much thought put into defining the term as to its personal meaning.
I asked this question this past March at On Aging 2024 in San Francisco, as I was honored to present to a special group of students from Hilarity for Charity’s Youth Movement Against Alzheimer’s (YMAA) program. The program offers students and youth increased awareness, aiming to narrow the gap in our country’s understanding of Alzheimer’s and other types of dementias. Alongside education and action, YMAA enhances personal and professional skills. Not only is YMAA educating students and youth about how to better support care receivers and caregivers, but also it educates students on how to care for themselves and their brain health.
Representing ASA as one of its Cohort One ASA RISE Fellows, for two days in a somewhat intimate environment, I engaged about 30 students in discussions on brain health, caregiving, care receiving, and health service equity. Sessions covered “Exploring Challenges and Opportunities in Aging,” and “Young Adult Caregivers: Managing Multiple Roles.”
Preparing the presentations was an anxiety-inducing task for me. I wanted to ensure students knew their significant place in the field of medicine today, and how vital it will be for them to “stand out” as they achieve goals and look to the future. Not knowing beforehand who would make up the group of students, I was thrilled to see that I would be sharing narratives with a highly diversified group of BIPOC women, and a couple of men. There were a few students specializing in gerontology, but the majority will become primary care doctors. I share this detail because I, too, am part of our BIPOC community. I am one of many whose lived experiences as caregivers and care receivers have been often shadowed by healthcare injustices.
As I prepared the slides, pulling research literature and data, memories surfaced from my time as an unsupported young caregiver, a journey that began at about age 12, and how those experiences cultivated a person who became empathetic, patient, a good listener, and able to easily engage with others. But best of all, I’m someone who meets everyone exactly where they are. From my experience as a young caregiver (and still today, unfortunately) it seems these characteristics often are missing in our healthcare providers.
‘Although I knew how to take care of my father, I didn’t know how to take care of the disease.’
I shared with the group that while a freshman in high school, my father was in the infancy stage of what would become a diagnosis of Frontotemporal Demetia (FTD). For my father and me, FTD was marked by symptoms of compulsive/inappropriate behaviors in public settings that were embarrassing, sudden onset of hygiene routine changes, and a what I would describe as a pure emptiness, emotionally.
By the time I was 20, his symptoms intensified, till he passed away, with me by his side, when I was 22. “Although I knew how to take care of my father, I didn’t know how to take care of the disease,” I told the group. No one, despite knowing our situation, had ever shown me.
Uncharted territories were the lessons of self-care. I knew nothing about caring for another human life with such great needs, nor did I understand what was happening to me. Here care was wrapped in a negative self-efficacy. I was full of self-doubt, guilt and confusion, coupled with feelings of honor to be the one caring for him. Respect, and the morals both parents and family members had shown me through exampling, made these feelings and thoughts more intense. I had to self-educate and learn on the fly, how not only to care for my father without knowing the disease, but also how to ground myself in humility, patience with myself, devotion, and laughter. Lessons that are evolving still.
You may wonder, weren’t there outside healthcare providers helping? Where was your family support? Healthcare providers, yes, but that’s all part of the extrinsic side of care. Via advocacy, a nurse practitioner, occupational, physical, and speech therapists were brought in, but only for brief stints. I reached out for help from short and long-distance relatives, all of whom either remained silent or actively turned away.
Turning Life Lessons into Career Goals
These reflections supported the 6 unconventional course objectives I laid out at the session’s beginning, on the challenges and opportunities in aging:
- Understand a bit more about this word “care.”
- Create the space for students to define their own definitions of care as professionals-to-be or emerging professionals in the field.
- Stay the course of pursuing a career in the field of aging, by understanding their unique and individualized importance to the field.
- Have them exit the sessions full of knowledge and new questions to ask.
- Consider taking on a specific new question to generate a legacy that finds the answer to that question.
- Examine a bit the values behind their decision to work with humans in need of care.
I was optimistic that sharing a personal narrative and leading the presentation with open-ended objectives would positively influence a few students to intentionally be mindful of how they will make a difference in the field. Pondering what will set them apart so that they stand out.
The end of the two sessions was touching. I was a bit taken aback to see that I had captured the student’s attention, their questions spoke to feeling empowered to carry out the hard work and the dedication that will require them to be intentional in their advocacy efforts and learning.
Not only about their patients, but also to not forget the needs of patients’ families, and particularly their primary caregivers. As in doing so, care would be implemented as a “best practice,” professionally. Conversations were fueled with an in-depth understanding by students for “how health disparities emerge differently” across not only communities, but also across time. And that moving forward, the future generation of care professionals “must make a discerned effort” toward “understanding the significance of their contributions,” to the “demographic shifts and trends we now see within the field of aging.”
I mentioned how we are all connected by space and time, in that at some point in our lives every human has had someone who showed affection toward us, took an interest in us, and attached a degree of importance to us, even if briefly—and that here, too, care is carefully defined; as we have (i) been watched over in our infancy, (ii) protected in toddler hood and up through childrearing years. We are (iii) cautioned as teens, and (iv) offered concern at all three phases of adulthood: young adulthood, midlife, and as an older adult.
‘Conversations were fueled with an in-depth understanding by students for “how health disparities emerge differently.” ’
Care may only be four letters, yet the weight of the word is vast. I had students question themselves and think about care in terms of working across various cultures, ages, and needs. I asked the students the following questions:
”At each stage (of life)—who here has gone without care?”
And: “What does that say about humanity and society collectively? How will you assure that as you support caregivers overseeing a loved one’s care, or work on a multidisciplinary team, that you consider significant factors as they pertain to the trends in aging, the opportunities to enhance quality of life as a well-rounded, cross-cultural provider? And how will you seat yourself as a care professional who sees a problem, as an opportunity for solution-orientated success?”
I asked the group to take notes and reflect upon the above questions as I spoke about the trends in aging for the general population verses specific trends pertaining to certain groups such as our LGBTQ+, Latinx and other demographic communities. Communities where care receiving and caregiving have barriers that are slowly being dismantled. I trusted that for some, ideas for how they, too, would rise as medical students, would come to mind. I’m happy to say that for the few who spoke with me privately, it seemed as though it did.
Perhaps it was because when discussing the specific trends for aging adults, I asked that they again consider what they will do differently. This time, the emphasis was what will it be that sets them apart from others in the session? I really wanted to emphasize not being average as a doctor or healthcare professional, and to not become one locked into care-barriers such as ageism, sexism, xenophobia, or any other -isms.
Finally, I asked that they consider their own cultural experiences, how they identify with society as an individualist or collectivist, and to think, too, about how their personal experiences impact how they view others who identify and understand living on a continuum differently than their own. The takeaway was that all these factors are interwoven, hence all of it together impacts care. Not only the care they receive now and moving forward, but most importantly how care will be offered by them to the communities and members of a community.
I was there to help encourage and influence their career objectives, yet the experience realigned how I define care and how I provide it, too. It reaffirmed that learning and understanding the needs of those who ask for care must be on a continuum as our communities, our societies, the nation, and simply put—the world, is forever changing with respect to how we view ourselves and each other. The commitment to dialogues about care is a must, as none of us—reader or writer, speaker or listener—can go without care in its many shapes, sizes or forms.
Norell J. Wheeler, MPH, MBH, is a family consultant for the Family Caregiver Alliance and a member of ASA RISE Cohort 1. She lives in the San Francisco Bay Area.
Photo caption: Norell Wheeler, in the back row, under the On in On Aging, with other RISE fellows and alums at On Aging 2024.
Photo credit: Stuart Locklear
