I’m a 29 year-old founder and startup CEO. Over the past six years I’ve lost my mother, grandmother, business partner and father-in-law to various cancers. With no prior medical training, I became the primary caregiver or part of the primary caregiving team on each of these four occasions.
It started when my mother was diagnosed with an aggressive form of Multiple Myeloma. I was in my last semester at college and starting my first company when I moved home to help with her care. She had been an oncology nurse for over 30 years and over the course of her disease, which she fought for almost two years, she taught me about being a patient advocate and how to be a better caregiver.
It was one of the most rewarding experiences I’ve ever had. It was also one of the most difficult and painful. I was 21, my father was out of the picture and my brother lived hundreds of miles away.
It was my mom and me against the world. It was us against Multiple Myeloma.
Luckily, one of the benefits of being a nurse for over 30 years is that most of my mom’s friends were nurses. Very quickly, we developed an informal network of friends to help out – most of whom were oncology nurses with decades of experience. Together we struggled through massive doses of steroids (with a shaved head and a penchant for cleaning, my mother’s steroid fueled alter ego soon became known as Mr. Clean); days when my mother could barely walk down the hall to go to the bathroom; and nights where cold sweats, dry heaves and no appetite were the norm.
Regardless of the time or situation, I could pick up the phone and call over a dozen nurses to get the support that I needed. Most often, it was just to hear, “It’s OK. You’re doing a great job. Relax.” Followed by instructions on how I could better help my mother.
There are an estimated 40-50 million unpaid caregivers in the US. This number will continue to grow as the population ages, as earlier methods of detection are introduced and as survival rates increase. I was lucky to have a strong support system made up of oncology nurses but even with my network, I found myself at times suffering in silence because fear, anger, depression or anxiety had started to take control.
I began writing and speaking so that I could share these experiences. Because I learned first hand how important a strong, informed support system is and I’ve seen how difficult it is for caregivers, families and patients who don’t have one.
I speak about patient advocacy, cancer support, and entrepreneurship. Please send me an email to check my availability.