FOUNDER DIANNE GRAY
HOW DIANNE GOT INTO HOSPICE AND PALLIATIVE CARE: A PERSONAL STORY
Like many people, our best choices often revolve around our personal lives. The story of Hospice and Healthcare communications starts with a simple storyline: "It was the best of times, it was the worst of times."
You may recall this phrase from a well known book, but it also applies to my life.
I was 28 years old, had what society deems "everything" including a long awaited blonde-haired green-eye son named Austin. What we didn't know was that Austin has a rare neurodegenerative disease named NBIA Disorders (neurodegenerative brain iron accumulation disorders). www.nbiadisorders.org
The disease slowly took away five year old Austin's ability to walk, crawl, move and see clearly. It also removed his ability to eat and talk over a period of years, while leaving his cognitive process in tact. By the time Austin was nine, he could no longer attend school and he was in extraordinary pain every day due to his speacticity and dystonia. He cried, I cried and we were all struggling to hold on. We needed help.
So in 2000, I called hospice and we became an "in home" hospice family-- and "family" now included a joyous, healthy little daughter, Christina.
I desperately needed help titrating thirteen different medications which included morphine, methadone, and valium. Like most pediatric palliative care/hospice families, I was in way over my head with nursing schedules, contracts, medications, skin care, and grief issues...not to mention emergency issues: hurricanes, pharmacy errors, and nursing no-shows. Let's also not forget normal things like Santa, homework, bath and story time, holidays, friends and much coveted sleep.
Unfortunately, in 2005, I had to make the most difficult medical ethical decisions of my life regarding my son's care and prognosis. Austin died February 25, 2005 at age 14, comfortable and at peace with Christina and I holding his hands.
The fourteen year experience with Austin and Christina, our hospice and medical care providers, friends, family and faith community, was filled with the best and worst of pretty much everything which has provided me with a bundle of insight, and the desire to create incredible programming and education projects and partnerships in the hospice and palliative care fields.
This experience changed forever my views not only on death and dying but also on life and living. Make no mistake about it: I want my son alive and healthy, but I can't change that. What I can change is how I live the rest of my life.
I commit to doing substantive work where and when I can in the areas of hospice and palliative care (including pain management and end of life care.)
To me, its this simple: Death is not optional, but living life fully is.