what is an end-of-life doula?
To me an End of Life Doula is a companion to be by your side as you make your final wishes so that when the time comes the only thing that remains for your loved ones is to be with you and love you. Until then we navigate together all of the in between so that your remaining time is to be lived to its fullest, however that may look to you. You are ALIVE until you are not.
As a 23-year-old new mom, I never would have imagined I would outlive the baby I was holding in my arms, as well as the one that would arrive two years later. But my experience as a mother was vastly different from my dreams... In addition to being a typical parent, it included being an (unlicensed) nurse, home healthcare and hospice provider - all while preparing for the inevitable early deaths of both my children who had cystic fibrosis. We learned how to make the most out of every day and live every day as if it was our last.
My oldest, Christina's, baby years were spent with regular hospitalizations. The pink bows I wanted to dress her in were accompanied by IVs, PICC lines and portacaths, which we eventually learned to manage at home. Not knowing her disease was a genetic defect, we wanted a second child and were hopeful for a better outcome with our son, Josh. He was tested at birth, which confirmed he was a carrier, and eventually diagnosed with CF in a sweat test four months later.
Nina was sick all her life and Josh was healthy. Camping and ski trips were sandwiched between doctor visits and therapies. She had a double-lung transplant in 2010 and was on a ventilator for three weeks waiting for her new lungs to accept her body. I lived with the constant anxiety of losing her.
But on the one year anniversary of Nina's lung transplant, Josh went into cardiac arrest. Staring at my 20-year-old son on life support, I was told to say goodbye. But I refused. A neurologist confirmed he still had brain activity and transferred him to Harborview Medical Center. When he came out of his coma and rehabilitated, we had him with us four more months. My son eventually refused additional care, said his goodbyes and went into hospice. He died in 2012, having lived 70 years in 21.
My daughter is still thriving 12 years later, and I've supported many other friends and family members through death. I know what loss looks like, feels like, and how death affects everyone individually. My hope is to help others plan ahead, be prepared and then be able to enjoy the rest of their lives as much as possible knowing the end is covered.
End-of-Life Doula Professional Certificate - The University of Vermont
Companion Animal End-of-Life Doula - The University of Vermont
“I see you as a guide or a witness to someone's life. That is important for so many people. You guide them through the questions, so they discover the answers... or discover their own perspective. Then people can OWN their ideas on what is important, their relationships to others and define their own process of dying. What does a good death look like, what is a peaceful death? Someone said a good death is well-prepared and a peaceful death is within... and you do BOTH... Amazing you." - CK