As a palliative care nurse practitioner, I get an opportunity to meet a variety of patients that are at differing stages of their lives. A new patient, who I’ll call Caroline, recently taught me that we should never ever make up our plan of care before we meet the person.
What I read about Caroline made me think I was about to meet somebody who was dying.
Hospice can be a very scary and ominous word to many people. As a hospice admissions nurse, I see the fear, indecision, vulnerability, confusion and despair firsthand.
Some patients I meet have a newly diagnosed terminal disease, and others suffer from a long-protracted disease that is now in the last stages. More often than not, the patient is ready to stop treatments and focus on pain and symptom management. They want to remain at home in safe, warm and familiar surroundings, rather than the grueling routine of a hospital or skilled nursing facility with endless doctor visit cycles.
My beloved late husband, who died November 11, 2014, was in the care of JourneyCare in our home for the last four days of his life. Coming from Serbia, neither one of us knew much about this health service, except that we were both scared by the word “hospice!” We associated it with the end of life and we were both horrified.
“Please don’t mention the word hospice,” I begged a social worker, who later helped both of us a great deal. “No worries, nobody likes that word,” she told me with a hug like a sister, and sympathy deep in her eyes.
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:
Choosing hospice care doesn’t mean giving up hope — you are in fact redefining it.
While those who choose hospice accept that further medical treatment almost certainly won't help them, they also choose to redirect their hope into mending and restoring relationships, spending quality time with those they love, and finding peace and comfort.
I’ve worked in the healthcare industry my entire professional life.
During my last year at Northern Illinois University, I completed an internship at a local nursing home and after graduation, became the director of social services there. This experience truly allowed me to foster my love of helping others and making a difference. Through the years, I found where my strengths lie in service to others. I achieved certification and received my Nursing Home Administrator’s License, quickly accepting an administrator position locally.
Shortly thereafter, my mother was diagnosed with a terminal illness.
It was more than two years ago when my mom, Rachel, had cancer that had advanced so severely, our family chose hospice.
I was 15 and remember her doctor recommending hospice, and then her sisters and my cousins coming over for a big family meeting. We all decided together that she would be cared for by JourneyCare.
Today I want to thank you, our donors, for your support and leadership. But when I think about what to share with you or how to show you the impact you make every day, my mind goes racing. That is because I have the honor of witnessing firsthand all the ways you help the third largest region in our country, the Chicagoland area and northern Illinois, and my mind is filled with so many wonderful examples of the difference you make.
But while I write this post, two stories keep coming to mind. The first is of an 11-year-old boy who lives in the far west part of our service region.
Take a moment to recall how you became part of our JourneyCare community.
Maybe you heard of us at a community education event on advance care planning. Or you learned about JourneyCare through a friend or neighbor who was touched by our amazing team of employees and volunteers. Or maybe you simply stumbled upon this blog and became inspired to engage.
However you joined our JourneyCare community, it was likely thanks to word-of-mouth and personal experience. As a friend of JourneyCare today, you have a personal understanding of the exceptional care and support we provide for patients and families dealing with serious illness and end-of-life issues.
My family was thrown into a crisis when my mother suddenly collapsed at home. She experienced multiple, catastrophic health events that lasted for more than a year. She ended up in a viscous cycle of recurring pain, hospitalizations, surgeries, complications, re-hospitalizations, infections and – just when we thought it couldn’t get worse – amputations to her lower extremities.
We ended up in just about every setting of care in Chicago, none of which could address all her needs. At one point, we brought her home with 24-hour care and were outraged to learn we had to pay $15,000 per month out of pocket because Medicare didn’t cover it.
We wished we would have been more educated and better prepared.