The Cost of Caregiving: Survivor’s Guilt

If I could turn back time, I certainly would. I try not to live life in the rearview, yet, as they say, hindsight is 20/20. I also believe that we learn from our past so that we can focus on our future more intentionally. However, after losing a loved one to cancer after years spent caregiving, I have admittedly experienced some survivor’s guilt. It has washed over me in waves and disrupted the life and identity I once had.

Guilt is a tricky wicket. It involves contemplating a conundrum of deep regret mixed with shame. It’s not an emotion; perhaps more like a heavy, dark cloud hovering above, casting judgment of wrongdoings. I often asked myself the ultimate question as guilt seeped into my thoughts. “Have I done all I could?” 

I recall a conversation with my pops at a point when I was burnt out from the constant around-the-clock cancer caregiving for my first husband, Nate. “I won’t have any regrets,” I said matter-of-factly. Speaking from his own experience of caretaking for his parents, Pops told me that the finality of death presents a different spin on what we thought we once knew.

I often thought that I’d rather be the one going through treatment than intimately observing a loved one suffer. I felt helpless. All I could offer was caretaking of Nate while running our business and the logistics of our intertwined life. Since doing things felt like an act of love, I worked relentlessly. This made me feel helpful. Driving to endless treatments and doctor’s appointments while juggling the preparation of fresh juice and vegan food, organizing countless meds and supplements on top of the never-ending list of business as usual… I remember feeling pulled in too many directions with my sanity wavering like a glimmer of sunshine through gray skies.

Nate had always been the strong, athletic type full of adventure. “Natestrong” as we called him or “The Yeti” because of his love of the outdoors. But once cancer side effects kicked in, all Nate wanted was for me to sit with him on the couch with our cat, Abercrombie. But how could I simply sit when there was so much to do and so little time?! Looking back, I’d gladly trade that relentless list full of trivial things for quality time with my partner-in-crime. I often think of this when I sit down to binge on Netflix with my new partner and pup. Why was it so hard then? Guilt.

At the end, Natestrong confirmed his strength and held on so long that it was hard to know when he would take his last breath. As it turns out, I wasn’t there. I convinced myself that he was protecting me, that Nate didn’t want me to be present for his grand exit. He said goodbye in a different way, I assured myself. I was this guilt-stricken girl who was too numb to even grieve. His parents brought him into this world and were the ones to help him leave it. There are times this hint of negligence still haunts me today.

After he passed, I quickly sold the business we ran together. How could I run Yeti’s Grind coffee shop without the “Yeti” himself? Letting go of our business closed a door on the community that supported us through the darkest days of cancer. They were the ones who sent us rainbows of love and hope, and I felt like I let them down by giving up on our 10 year crusade of serving small town comfort in a cup. More guilt.

Riding mountain bikes was Nate’s passion that he instilled within me as well. He even had a bike company, LOV Bikes, for which he painted custom, colorful bike frames and built dream machines worthy of joy rides. I had six bikes, yet riding daily turned into riding rarely. I couldn’t even touch a bike for a solid year post Nate’s passing. I needed to grieve, to feel the guilt, and then eventually the cloud lifted, turning to lighter shades of gray and eventually blue skies. When I got back on a bike it was in honor of Nate and it honestly began to change my outlook on life.

At first I was afraid to be happy after Nate passed, as though my suffering could relieve the guilt I felt. I tried to run from my grief to Iceland, Italy, Amsterdam, Bali, Australia, and Thailand. Grief found me in each country along with signs from Nate as though he was telling me, “It’s okay, this is for good for you, good for us.” Traveling became cathartic and I slowly found my new self. I also realized that Nate was still with me and always will be, no matter where I go or what I do.

Sometimes still today, I catch myself hesitant to embrace positive things happening in my life. I even feel guilty that I don’t constantly think about Nate and our life together anymore as I move forward in love with gratitude for the present moment. However, I know that Nate always wanted the best for me. So now guilt arises as a slow burn and thankfully fizzles before engulfing me in fire.

My evolving career as a yoga therapist in the young adult cancer space is inspired by Nate and his entrepreneurial spirit with LOV Bikes. Yoga became my therapy while caregiving and grieving. Processing and feeling led to healing and this authentically raw experience is now accompanied with extensive education. LOV Yoga is my ongoing connection to Nate’s legacy and the love he shared while on earth. It is my dharma, or purpose, which I gratefully embrace because of God’s grace. I was somehow spared and then learned through loss. This grace is a gift and it will no longer trigger guilt.

With this evolution of guilt through grief, some things have come full circle. The cycle of life has spiraled around so that my now husband, Ryan, and I prioritized family planning. We both feel called to create life from the losses we experienced. Our angels, both young adult casualties to cancer, are watching over our baby-to-be. Guilt has now turned to hope through love.

So through this journey of caregiving, loss, grief, and now new love, I have learned that guilt is a double sided coin, a parallel path we walk. Is the glass half empty or full? That’s up to us to decide. We feel guilty we survived yet are blessed that we are alive. We grieve because we loved and then lost, which is better than not loving at all. Love lives on and forever outshines guilt. LOVE is truly our greatest gift.