April 16 is National Healthcare Decisions Day, a nationwide initiative that aims to help people across the U.S. understand the value of advance healthcare planning.
I want to tell you about why I'm passionate about advance directives, with a hint of my irreverent sense of humor to boot.
Advance directives should be filled out when we are healthy and lucid. They should not be something we hastily prepare as our stretcher is being loaded into an ambulance.
They don't affect our everyday lives or even take effect until we are unable to make healthcare decisions for ourselves. How many people end up being non-decisional at some point? I’ve worked at the JourneyCare’s Pepper Family Hospice CareCenter in Barrington for five years now, and I can say, without exaggeration, that everyone reaches a point wherein they are unable to make decisions for themselves. This appears to only apply to mortals. So far, I have been alive for 29 years and it appears that everyone is mortal, possibly even including myself.
Everyone has heard the words “social work” and “social worker," but do you know what they really mean? When I was growing up, I thought social workers were men and women who wanted to devote their lives working in underprivileged countries helping poor people enrich their lives.
Well, I grew up and learned I wasn’t completely wrong. And after 20 plus years as a social worker, I continue to learn everyday what social work and being a social worker truly mean.
As a hospice social worker I wear many hats. I am a noun, verb, adverb and adjective. I'm a counselor, confidante, advocate, researcher and resource. I'm a cheerleader, motivator, listener, party planner, wedding coordinator and dream maker.
Mainly, I am a humbled and privileged, invited guest into the lives of patients and families who I've been honored to know over the years. Here are a few of them:
I was born in El Paso on an Army base, moved back to Puerto Rico and then to my forever home, Chicago. I am a single mother of a wonderful eight-year-old boy who I named after her late grandfather, Antonio. The first few months of working for hospice was a definite adjustment and now, 15 years later, I can’t imagine my life without it.
This year marks our country’s 250th Independence Day. But when’s the last time something made you feel good and hopeful about our country? With the senseless violence and crazy political climate we’ve witnessed in recent months, it’s often been hard to feel positive.
But I found an antidote! Volunteer with Honor Flight.
As JourneyCare's We Honor Veterans program coordinator, I frequently interact with other veteran-serving organizations. And there’s no other volunteer experience quite like serving as a guardian for a veteran on an Honor Flight.
For over 30 years, three nonprofit, community-based hospice agencies separately served parts of 10 counties in the Chicago area and northern Illinois. In June 2015, these organizations combined more than 100 years of experience and expertise to become one: JourneyCare. Today, JourneyCare serves nearly 400 communities in those 10 counties. It’s been one year since we made that announcement ... and what a year it has been!
After a 10 year hiatus as a stay-at-home mom, Debra returned to the workforce when she joined the organization in 2013. In her former professional life, she managed the U.S. office for a British manufacturing company, started her own cleaning business, ran a showroom at the Merchandise Mart and practiced law. As a volunteer, she served as an officer for a number of non-profit organizations. In her spare time, Debra enjoys decorating, event planning, gardening, singing and performing in local theatre productions.
I have been so fortunate to be a social worker and now a field team manager for JourneyCare. The patients and families I meet truly affirm why I was drawn to this work. Some of the most challenging circumstances I have experienced working with family members became some of the most exciting, compelling and educational cases I have ever had the privilege of working on and I consider them “gifts.”
In my five years with JourneyCare, there have been so many moments that stand out and truly touched my heart...moments made possible by care teams working together creatively and pooling resources, all to make a difference, big or small, for patients and families.
My nursing career was born in intensive care units and emergency trauma rooms, serving patients in fast-paced, critical settings. When dealing with cardiac arrests or other life-and-death emergencies, I felt highly comfortable helping patients in these crucial moments.
So when my nursing focus shifted to hospice and palliative care (first in Northern Virginia), I was also comfortable asking the tough questions.
My mentor, author and RN Maggie Callanan, taught me to use the first two to three hospice visits with our patients to build trust and understand their beliefs, wishes, and needs so that we could best serve them in whatever time they might have.
Maggie stressed the importance of hoping for the best by preparing for the worst and so during the initial visits we intentionally asked: “If you could design your own death, how would you do it?; Where would you want to be and who would you want to be there?; Do you believe in something after death?; What do we need to do to make you feel as comfortable as you can be?”
It was earlier this fall that the idea struck me and four of my fellow volunteers. After several years of giving our time at JourneyCare’s Markshak Family Hospice CareCenter in Glenview, so many people had thanked us for our time and effort. But we realized there was no special event for us to thank the dedicated CareCenter staff for their hard work.
I feel so blessed to live during a time when advances in medical care and technology have helped many to live with or live through life-altering conditions, exceeding disease trajectories by not just weeks, but months and even years. But there comes a point in a serious illness when even the most cutting-edge, technical, and specialized medical interventions do not get us where we want to be.