FOUNDER DIANNE GRAY

HOW DIANNE GOT INTO HOSPICE AND PALLIATIVE CARE: A PERSONAL STORY

The story of Hospice and Healthcare Communications starts with a simple storyline: "It was the best of times. It was the worst of times."

I was 28-years-old and had what society deemed "everything," including a long awaited blonde-haired, green-eyed son named Austin. What we didn't know was that Austin had 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 processes intact. By the time Austin was nine, he could no longer attend school and was in extraordinary pain due to spasticity and dystonia. He cried, I cried and we all struggled to hold on. We desperately needed help.

So following Austin's horrific few weeks of pain and 32 days of hospitalization, our local hospice was called and we became an at-home hospice family-- which also meant that my joyous, healthy, pre-school daughter would also bear witness to extraordinary suffering and compassioante care in her home, too. 

As a caregiver, what do I remember most? That I was emotionally drowning and 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.

Sadly, in 2005 I had to make the most difficult medical ethical decision of my life regarding my son's care and prognosis, and Austin died February 25, 2005 at age 14 -- comfortable and at peace with my then 10-year-old daughter and I holding his hands.

The fourteen-year experience with Austin and Christina, our hospice and palliative care providers, friends, family and faith community was filled with the best and worst of pretty much everything. I look back now and see that it also provided me with a wealth of insight and wisdom. For this, I'm immensely thankful...and trust me, I never, ever thought I'd be able to say that. In closing, thank you for being a part of this journey...and for walking the walk with me. With each passing year, I'm more sure than ever that though we can't escape death, we can certainly choose how we live and love... each and every day.