Congratulations to Grand Prize Winner Robin P. from Washington.
“The Pegi Experience”
Caregiving is so close to my heart that it’s one of the hardest things to write about. My first experiences in caregiving came as a young child to dysfunctional parents. When I was 16, my uncle died. I stayed with him in the hospital at the end for several weeks as he passed from an aggressive form of lung cancer. I remember it as one of the most painful things I’d ever been through. I had no idea what I was doing and knew work in the medical field wasn’t for me. I just didn’t want him to be alone. It ended up being a defining moment in my life.
After the birth of my second child, my grandmother became ill and was placed in hospice. I drove four hours through the mountains to take care of her every weekend so my aunt could have a break. They were some of the most difficult but poignant and wonderful memories I have of my grandmother, who was truly my hero in life. Taking care of her, full care as she was blind with limited mobility and bedridden, was challenging and hardest for her. I remember trying to be as gentle as I could. Again, I decided medical care wasn’t something my tender heart could handle. Fast forward a few years, and my oldest daughter started to show signs of mental illness. I became her fiercest advocate and spent a decade trying to get her adequate care and trying to protect her. So, I guess you could say I was a caregiver since I was a child, although I thought it was something I would never be capable of doing.
I moved to the Pacific Northwest in 2001 and didn’t know anyone but my in-laws. I quickly became lonely as a stay-at-home Mom and part-time freelance writer. I found a friend site online and made friends with “AndromedaNova111”. We quickly realized we had an incredible amount in common and became fast friends. Over the years, she supported me through starting and running my business, the tumultuous teenage years of my children, and both of our marriages and divorces. Our friendship was the kind that no amount of time or miles could change. We always seemed to pick up where we left off like nothing had changed.
In February of 2008, I got a frantic phone call at 6am from a mutual friend. Pegi, who had terrible headaches, was in the hospital. They had found a massive tumor and she needed immediate brain surgery. I went to the hospital and stayed with her through the surgery. The news following the surgery wasn’t good. Pegi had Glioblastoma Multiforme, a stage four aggressive brain cancer. It was terminal. We went home, and I stayed with her in the days following her surgery. I went back and forth caring for my own family 20 miles away, and then drove to take care of her and her two children. I did this every day for three months before I temporarily left home to move in with Pegi as she was rapidly declining.
We went through four brain surgeries together. I became her full-time, unpaid, caregiver out of sheer necessity as her family lived far away. I had a team of wonderful friends who helped along the way and “Team Pegi” surrounded her with love until she left this world on July 5th, 2008. It was the single most defining moment of my life; it changed me forever and inspired me in unexplainable ways. I had no idea it was only the catalyst of what would prepare me for what was ahead.
In September of 2008, I was gifted my first grandchild and became her full-time Mom because her birth Mom was too young yet to care for her. I single-parented her for 15 years as her full-time caregiver. She is on the autism spectrum and was diagnosed with Ehlers-Danlos Syndrome and a benign pineal brain cyst. She would go on to have spinal surgery and two brain surgeries. While high functioning, she still required constant care and advocacy. I have taken this on with every beat of my heart as my life’s purpose.
So, in the end, caregiving means everything to me. It is who I am. I learned this through life experiences, love, empathy, and compassion toward others. Over the years, I developed Intracranial Hypertension, and I have been through eight brain surgeries of my own. The experience I gained through caregiving I believe gave me the tenacity to survive this. I became humbled as I went into full-time care and became in need of a caregiver. I at this time have 166 hours a month of care just so I can live independently.
Seeing it from both perspectives has given me a unique understanding of what caregiving means. As I recover, I’m considering caring for others. I thought it was something I never wanted to do with my life, and it ended up becoming my life. Now I believe it is the highest gift I can give; my life’s purpose is to lend compassion to others in need and to learn to accept help with grace when I need it.
