For almost 12 years after his first heart attack, I tried to prepare for my father’s death. At first, my attempts were a protective measure, as if imagining the worst-case scenario equaled my survival. I’d let my mind drift into these horrific, albeit, creative scenarios of marching down hospital halls, getting news from doctors, comforting family and friends. Basically, I produced, directed, and starred in my own dramatic series for an audience of one.
After his second heart attack and a cancer diagnosis, the worst-case scenario felt too close for comfort. I ceased, to some extent, with the fictional imaginings. Instead, questions and a search for answers became a means to cope. I thought understanding the landscape of my dad’s illness would help our family navigate the worst, with some dignity, clarity, and agency. Cancer, however, could care less about dignity, clarity, or agency. This was a new space of life in which my family and I were forced to learn, assess, decide, watch, wait, react, prepare, in no particular order. The experience pierced my soul. There was no order, so I fought to create some. This fight led me to reside in an unfamiliar and painful space where you do the smart thing and prepare for a loved one’s death, while hoping with every ounce of everything that they live. Throughout the whole process, I found my best and worst self, and created my caregiving mindset.
My caregiving mindset was tricky. At my best, I operated with laser-like focus and precision. I was an advocate, a champion, a protector of my loved ones. My energy was relentless. I built solid relationships with medical professionals and mastered medical speak like a pro. Bureaucracy was no match for the levels of patience I could exhibit. Organization, multi-tasking, focus, and sharp listening skills were tools I could wield with ease. Something that seemed minor, like hiccups, required analyzing and prioritizing, and I’d do it, with gusto, creating scenarios and a strategic plan on how to address said hiccups. I was hard core.
At my worst, I drowned in fear. The nuances and details of a cancer diagnosis often left me feeling lost or confused. I bullied and forced information and clarity down my family’s throats. Somehow, I morphed into an excellent and mediocre person, and stopped distinguishing the difference between the two. Terror, over the physical impact of treatment and illness on my father’s body, left me with many sleepless nights. At the same time, I carefully watched my mother who is now a survivor, but had also been diagnosed with cancer at the same time. Except for a few futile attempts to remember my own life, I stopped striving for much of anything. My family was my life. I performed professionally because that’s what you do. I focused almost 95% of my time on everyone else. But at a certain point, the fear translated into mental, emotional, and physical exhaustion. Every day, my caregiving mindset embodied these opposite dynamics and everything in between. I felt like a fierce, fabulous, fear-filled failure.
And then during one random middle of the night, my dad died from his third heart attack.
In an instant, we no longer had to worry about blood tests, multiple myeloma, treatment options, or emergency room visits. Instead, grief gripped me from the inside and rendered me vulnerable to a painful decline. Confusion and anger dropped on me like a net of twisted ropes. Life goes on, but I couldn’t reconcile that fact. A horn from the car behind me could create an irrational surge of anger on a simple drive to the store--“don’t honk at me, my dad died.” A song on the radio could send me into a fit of deep, soul-felt sobs. Small talk felt like agony. Real talk felt too heavy.
In my mind, and sometimes in real time, my expressions of grief made others uncomfortable. People needed me to keep living, yet my only certainty was that I was uncertain I could survive the process. For the most part, this stayed inside my heart and mind, a conversation between me and God. I kept going, and tried to find my footing in this rocky terrain of grief and sorrow. My previous life roles, as a daughter, sister, niece, cousin, aunt, friend, professional, love interest, all felt foreign and painful. After 11 months, and a series of small-to-large crisis situations, mishaps, mistakes, and missteps, (including, literally, a fractured foot), I realized that, as things were, I wasn’t going to live a very good life.
What I understood clearly was that I’d either exist until I died, or thrive until I no longer lived. Two very different paths. I would never stop missing my father or ever understand this human experience where we all leave our bodies and our loved ones behind, but I had reached a crossroads. Either way, grief would be my forever companion; but I now understood that I had a choice to either focus or fold.
During this time, my caregiving mindset was dormant, but had not disappeared, despite my father’s death. Somewhere, the advocate, champion warrior, who was both courageous and afraid, waited for me to choose. Focus or fold? When I chose to focus, the mindset kicked back in, but this time the energy was directed towards myself. I decided to live and, in that decision, accidently discovered another use for my caregiving mindset. I would learn the practice of self-care and I would save my life.
This new mission, to find a way to cope with the unimaginable, became my focal point. It was daunting, and sometimes it still is. There are so many ways, small and large, where my wants, my needs, my own thoughts about my life are hidden or intertwined with what others think or believe. I often find that I have to take small steps with careful consideration and large leaps into nets that I’m not even sure exist. Back then, however, the process was so new to me, but I was committed. Piece by piece, I started to unravel my life and ask questions. “Am I on the right professional path?” The answer was not really. “Are my interactions with family and friends helpful or hindering to myself and to others?” Sometimes, they were both. “Are my habits, poor or healthy, leading me to a life I could be proud of?” Yes and no. “If I died tomorrow, what would be painful to not accomplish?” That answer actually produced an entire list. That was when I knew, that no matter how hard, I would fight for my life. Small steps. Piece by piece. I would break it all apart and put it back together.
It’s been almost six years since my father died and I marvel at my journey, and that of others who walk or have walked a similar path. Today I have my struggles, but they feel a little different. There’s an exciting present right now and a promising future in front of me; both are reminiscent of dreams and ideas I said mattered a long time ago, before my caregiving mindset became real. This new life, the growth after grief, it doesn’t feel familiar nor comfortable quite yet. It feels real and surreal, both at the same time, and that’s okay. My father’s life and death taught me that sometimes faith and fear intertwine before they stand alone, or before faith takes the lead. Sometimes the worst-case scenario is both an end and a beginning. You can take care of others and take care of yourself. You can survive and thrive. These haven’t been easy lessons, but I know now that’s kind of the point. Life can be hard and so can life lessons.
So now, I keep going; no matter what, I keep going. I miss my dad, but I’m so grateful to have found my silver self-care lining. I choose focus, and feel grateful for that choice every day.
By Michon Lartigue
From the Book Living With Grief: Transforming Loss Finding Potential for Growth
This chapter was reprinted with permission from Hospice Foundation of America
Hospice Foundation of America’s mission is to provide leadership in the development and application of hospice and its philosophy of care with the goal of enhancing the U.S. health care system and the role of hospice within it.
Purchase this book or any of their other resources at http://hospicefoundation.org/