This month’s article has been particularly hard to write. I have started and stopped often, searching for the correct words to reflect on a subject that always incites more questions than answers. But the reality is, there is no correct language, no perfect words to offer when a caregiving journey comes to an end.
This February marks my sixth year in the world of caregiving. It’s a journey that began when I was 25 years old, fresh out of graduate school and working at my first real job. That’s when I got the call that my father was sick. At that time, no one knew what was wrong, only that it was serious. In the six years since that phone call I have watched my father survive astonishing circumstances: liver transplant, multiple strokes, bowel obstructions, and finally, renal failure. Last week he made the courageous decision to end dialysis and spend his final days at home. And so begins a new first in caregiving: learning to say goodbye.
Six years has taught me a lot, but the biggest lesson I’ve learned is to protect my heart. You see, I used to be the kind of girl who wore her heart on her sleeve. I fell in love fast, hard, and committedly. My love for my family has always occupied a niche in my heart so deep and so loyal, I’d willingly fight for them until the bloody end. But when I nearly lost my husband eighteen months ago to a severe brain injury, I had no choice but to learn to restrain my heart. I simply couldn’t survive heartbreak of that magnitude.
There are many things I like about the person caregiving has taught me to be, but my dulled heart isn’t one of them. Like a soldier in an epic battle, brain injury forced me to build a barricade around myself. The grief associated with losing the life my husband and I once had and the connection we once shared was so tremendous, I knew if I allowed myself to feel the weight of that sadness each day, I would never get out of bed, let alone be able to help TC through his recovery. What few people realize, however, is that my grief over brain injury has always been compounded by the slow and agonizing loss of my father. In a way not dissimilar from brain injury, my dad’s health problems have transformed him into a new person over the past six years, and, as a result, I had to learn to let go of my former attachment to the two most important men in my life.
Witnessing six years of almost constant suffering has made me hard. I can’t get worked up in the way I did during the early days of this journey. I’m pretty sure I’m nearly out of tears. I’ve spent more time in hospitals than I have with friends over the past six years, and most days, I feel twice my age. Yet, my heart is still tender and that’s why I’ve learned to keep it safe.
But here I am, with hours, a day or two at most, to say goodbye to my father and I realize that the next step for us all involves more courage and more bravery than we’ve displayed before: we need to surrender. My dad needs to surrender his tired body and acknowledge the fullness and beauty of his extraordinary seventy years on this planet. My mom will need to surrender her role as a full-time caregiver and learn to make peace with some of the more painful memories of the past six years. And me? I will need to surrender my closed heart.
As I watched my three-year-old son sit beside me the other day, eagerly helping me to feed my dad, I was struck by his fearlessness. It didn’t occur to him to be scared or nervous in the presence of someone who is dying, much the same way it’s never occurred to him to be confused or embarrassed by a father with unusual disabilities. And unlike me, who has shied away from strong outputs of emotion during this experience, my son is willing to unleash his love both loudly and frequently. “I love you, Pop-Pop!” he smiles, clinging to the rail of my dad’s hospice bed.
Why can’t I be that brave? I asked myself, questioning for the first time whether my dull heart is the consequence of my fear, not the achievement of my strength. Am I so scared of getting hurt again, of having that rug swept out from underneath that I’ll sacrifice the time I do have with my loved ones?
Caregiving is not for the weak of heart. Neither is love. In this life, we will be hurt in unimaginable ways. But we will also survive. These past six years have been tough and, at times, incredibly overwhelming. However, they’ve also been insightful, reflective, and joyous. At times I feel I am holding onto a basket of contradictory life truths. The body is fragile, yet built for resilience. The heart is tender, but remarkably iron clad. Life is generous, but, at times, inexplicably cruel. There are so many lessons to be learned on this journey, I can only hope to put a few into practice as I move forward.
Yesterday, the tears finally came. Driving down the long country roads of the rural town my dad so loved in his lifetime, his legacy was suddenly transparent. Open your heart. Love big. Cry often. Nothing is scarier than missing out on life. The surrendering part is hard, but there is so much reward.
In these bodies we will live, in these bodies we will die.
And where you invest your love, you invest your life.
- Mumford and Sons, from “Awake My Soul”