Just five days before his first scheduled chemotherapy treatment, my dad felt ‘off,’ slightly dizzy, and his walking gait changed. Within 48 hours, a tumor in his spine caused permanent lower-body paralysis.
Ready or not, everything about life was significantly different. Our family patriarch was instantly replaced by a man now dependent on others for 98% of daily living. He felt shocked, defeated, helpless, and scared. My mother was deeply unsettled, unsure of what modifications were required to bring my father home from the rehabilitation hospital.
Life suddenly felt like a rollercoaster. One second, we were going up, the next, we were plummeting down. Sometimes we were being flipped and dragged backward through twists and turns and violent curves. It was a jarring disjunction for every member of the Florida Jackson Five. We were all shrouded by feelings of sadness, fear, overwhelm, and even anger that we didn't understand.
Despite much trial and error and a steep learning curve, I became the appointed family caregiver for both of my parents. I uprooted myself for 5 months to sleep in my childhood bedroom, while my family stayed at home, 1200 miles away. I sacrificed everything in my life to bring my father home. He deserved the best quality of life possible in the comfort of his home, and my mother yearned to feel capable, safe, and supported.
We go up, we go down. It became a reliable pattern: I felt great, then I felt horrible. One moment I felt empowered that I could change the entire world, and the next, it's too much to ask me to move off the couch. I started to dread when things were going smoothly because I knew the inevitable was coming next. That stomach-churning, heart-breaking, free-fall life turned upside-down emotional low that feels like it might wipe me out completely.
What if...instead of screaming and clinging desperately to the bar in front of me, what happens if I loosen my grip and peek through my squint? What happens if I reach for a supportive hand as we round the next bend? What if I could just ride the terrifying ride and stop praying for it to end? What if I take a deep breath and ease my head back, while surrendering to the g-forces and constantly changing track?
At some point, I realized we go up, we go down, and even though it feels like we are on the verge of derailing, we actually don't crash. We can learn to enjoy the ride. We can recognize the lows amplify the highs, and the unexpected turns are confusing but sometimes exciting.
My focus became less about helping my father heal from his chronic situation, and more about helping him achieve a more peaceful landing at the end of his life. I stopped anticipating the next low as we started a steep ascent to a high. I practiced surrendering, noticing where I was at any given moment on the track.
I connected with my parents in a way that words don't adequately describe. We took the time to pause, connect, and find joy in drinking our favorite smoothie. I spent quality time snuggled in my dad's hospital bed, talking, laughing, and reminiscing. I gave my mother unconditional emotional support. There was nothing she could say or do that I wouldn't try to solve, repair, address. I learned to be patient with my parents and myself in a way I have never imagined possible. I experienced the priceless gift of extending dignity and grace to those who are frustrated that they can't change their situation or even help themselves.
Caregiving doesn't change you. It reveals the essence of you. Caregiving's rigor sculpted me into someone who understands more deeply, appreciates more quickly, cries more easily, hopes more desperately, and loves more openly.
Note to Self: We go up. We go down. There will be big climbs. And then there will be, without a doubt, some pretty big falls. Either left or right, the ride always goes one way. Just allow yourself to be right there. The track will continue on. It will take you to where you need to go.
By day, Jami is a healthcare marketing strategist. By night, she is a yoga teacher and the Chief Chaos Coordinator of her family. Jami is imperfectly parenting her two kids: A kindhearted and autistic 20-year old stepdaughter, and a precocious and curious 9-year old son. During the COVID-19 quarantine, Jami became primary caregiver to her elderly parents. This is the first time she is sharing any original work. Her personal mantra is “Always, always, always take the high road”. Jami is a gifted napper and is captivated by colorful sunsets.
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