When my mother's relatively routine spinal surgery went wrong nearly seventeen years ago, leaving her in chronic pain and unable to work, my brother gave up his life as he knew it. We call him "the sacrificial lamb." Like Jesus Christ before him, my older brother laid down his entire life at the feet of the people he loves. At 18 years old, my brother was entering his sophomore year in college. He was doing well with his mechanical engineering classes, made many friends, and enjoyed the occasional road trip out of state to go rock climbing. Our mother's surgery shattered his world. My brother came home from college for the weekend, thinking he'd only need to be present for the surgery -- he never returned. He spent his days helping our mother to the bathroom, cooking, cleaning, and driving me to middle school. He got a full-time job as a package handler and became responsible for our mortgage and all other household bills. As time went on, his friends from college stopped calling. Providing care for us took over his life, so much so that he was no longer able to engage in his love of outdoor sports.
I was not spared in the upheaval of our lives. My childhood was an anxious and confused one. My previously healthy, long-distance marathon running mother suddenly could not leave her bed. While I was present to help meet some of my mother's care needs, in part because of our seven year age difference, my brother served as the primary caregiver. His caregiving continued as I pursued my dreams of attending college.
Sometime during my senior year of college, we met with a financial planner. She tasked all of us with writing down a list of our life goals. I had just made the decision to go on to law school in the upcoming year, so my list was highly detailed with 50 items, including law school. The lists from my mother and brother, in contrast, had no more than a handful of goals. The financial planner took one look at our respective lists and suggested a complete overhaul. Rightfully so, she declared that it wasn't fair that my brother stopped pursuing his life goals to serve as caregiver. She suggested that my brother and I switch places: I would forgo law school and get a full-time job, so that my brother could go back to college. She couldn't fathom why I should pursue a graduate degree, when my brother hadn't finished his undergraduate degree.
The "no" from my mother and brother came in unison. The recession had just hit, and jobs were scarce, even for college graduates. My own venture to law school was partly intended to ride out the recession, hoping that I'd at least have an employable degree upon graduation. My brother echoed the same sentiment: our finances were already stripped bare; it made more sense for someone in the family to have a degree with a higher earning potential. My mother felt strongly that my brother's sacrifices were validated. She didn't think his life was fair, nor did she believe "switching places" would remedy our plight.
In agreement with the financial planner, I told my family that I would get a full-time job to do my share. I was overruled. We left the financial planning meeting and not much was to change within our family. My task was to go onto law school, graduate, and get a high-earning job. In short, be successful. The life as primary caregiver would go on as usual for my brother-- ever-present, ever-faithful.
Eight years later, I remain uncertain if we made the right decision as a family. The guilt lingers and likely forever will. As young adults typically do, I tweaked my career choice a few times--left law school, got a masters degree in counseling, and am now nearly finished with a doctorate. My thoughts towards my career became less focused on earning potential but on honoring my brother. My doctoral research seeks to understand the ways a young adult's identity may have been shaped through caregiving, and to learn more about how to better support young adult caregivers as they transition into adulthood. My work is guided by my brother's caregiving experience, as my brother felt that his identity was wrapped up entirely in the role as caregiver.
At the time of the financial planning meeting, my brother was presented with the opportunity to break free and be rid of us. He could have returned to college, finished his degree in mechanical engineering, and secured a high-paying job. The likelihood of me finding a job to support the family certainly weighed into his decision, but something more abstract and less calculated ruled that day- love, compassion, and devotion.
That financial planning meeting was just another instance of my brother denying his own interests, wishes, and goals so I might feel free to have my dreams fulfilled. He had selflessly left college to care for us--and every day for seventeen years and counting, he made that choice to continue caring. He lost everything, so that I might gain everything.
He and the other 6.9 million child and young adult caregivers currently living in the United States need more than our praises. Our recognition of their tireless efforts must extend to advocacy and real change. Funding on national and state levels must be directed to providing younger age caregivers with targeted support, e.g., respite care, peer support groups, and transportation assistance. The financial strain on young caregivers cannot be overlooked; policy must include stipends for younger age caregivers for both daily living costs and educational pursuits. Our conversation on supporting caregivers has to broaden to consider the needs of the entire family: those with health conditions and disabilities need better support so that undue burden is no longer borne on the backs of children and young adults.
If we believe in honoring younger age caregivers, we must also take up the fight to support them.
True healing requires more than just medicine and treatment, which is why we've teamed up with Dignity Health to discuss how compassion and a human touch can benefit our health and our lives in myriad ways.
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