I visited a recently admitted pediatric patient, 17-year-old Lucía. Here from Mexico City for treatment in Chicago, she was later discharged to hospice in her aunt’s home in a nearby Illinois town. In reviewing the most recent notes for this young cancer patient, I was upset to find that her parents were not here with her. Her dad had died, as well as one of her brothers, and her mom was recently hospitalized. Make-A-Wish Foundation was trying to get her mom here on a temporary visa to visit.
But when I arrived, a large support group of well-dressed cousins and aunties were there. They were all in a celebratory mood. They had brought home-cooked food, and were smiling, friendly and happy. And her wonderful brother, Alonso, who was also her best friend, was by her side.
Yeimy, a beautiful mother of three, lost her hair to chemotherapy. By the time she came to our Pepper Family Hospice CareCenter in Barrington, her hair had started to grow back but was still very short. As a show of support, seven of her family members buzz cut their hair as short as hers, including her 16-year-old daughter Maggy. They did this en masse on a Saturday afternoon at the Barrington CareCenter.
Yeimy's husband was hesitant about having Wendy, their 9-year-old daughter, cut her hair quite that short. Wendy was unhappy about this, but began to search for another inspiration.
My path to becoming a hospice volunteer is unusual in that the first step was taken by my wife who checked out the Marshak Family Hospice CareCenter in Glenview, assuming I was going to need it.
I’d been experiencing dizzy spells that on a few occasions toppled me to the floor. Being a committed idiot, I didn’t tell anybody about this until one morning, after nearly falling down, the thought occurred that this might not be normal and that an emergency room visit just might be appropriate.
As an employee of JourneyCare and a person working in hospice for many years, I understand the importance of dying with dignity. My grandfather had been declining since September of 2015. My mom and I flew out to Puerto Rico and brought him home to Chicago to take better care of him. It was an ongoing battle with my family. I wanted hospice and they wanted to fight to keep him alive by any means necessary. I had to learn, with the help of my wonderful coworkers, to take a step back and wait for her to ask me.
Advance care planning is something I'm passionate about. As an Advanced Care Planning Advocate for JourneyCare, I am very lucky that my job allows me to do something I believe in so strongly.
An important part of my work is to bring focus to National Healthcare Decisions Day, which is approaching on April 16. This nationwide initiative exists to inspire, educate and empower you, as well as your healthcare providers, about the importance of advance care planning.
This year’s theme is “It Always Seems Too Early, Until It’s Too Late.” I have witnessed the truth of this slogan firsthand.
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.
Children can, and do, grieve and children process their grief through play. Two concepts that my training has taught me and two concepts that I have witnessed firsthand countless times as a child life specialist. Yet, somehow, these two concepts became more real to me than they ever were as I sat with a five-year-old sibling of a three-year-old hospice patient in her backyard, providing support as she learned that a frog she caught and had been caring for had died.
She talked about playing with him the day before, how he seemed to really enjoy the dirt, and how sad she was that he had died. She cried as she talked about how much she would miss him; kissed him as she talked about saying goodbye. We picked flowers, prepared his resting place, and said what we would miss about him. Throughout the interaction, she discussed the parallels between her brother’s anticipated death and the death of her frog. She cried for both as she attempted to reconcile what was to come.
I am so blessed to be working here at JourneyCare. My first two months have been filled with one amazing day after another. I am humbled by the heartfelt work I have seen firsthand and I am so proud and thankful for everything I have experienced thus far.
I joined JourneyCare in December, 2015, as Senior Director of Service Excellence. In this role, I’m collaborating with virtually every aspect of the organization; with a focus on developing a culture filled with programs and values and a walk-of-life that prepares us to deliver service excellence filled with magic moments.
We all have unique journeys to share that somehow guide us to where we are today.
Many people know the beauty of the words drawn from the Biblical Book of Ecclesiastes, Chapter 3. This ancient poem (in the 1611 King James Bible) begins, “To everything there is a season, and a time to every purpose under the heaven.” And then, the second verse continues, “A time to be born, and a time to die.”
The writer is correct, every one born will, someday, die. That we will die is not unexpected, but it is a moment not easily faced. It is not a topic we lift up in polite company. We sense its finality in our souls and are often ill-equipped to face it. Death can feel like the ultimate thief, the ultimate enemy and so we convince ourselves that it is far away and refuse to acknowledge it is a reality for all who ever draw breath.
The first patient to be admitted to the Marshak Family Hospice Pavilion was a 64 year old married female who was admitted to IPU at Lieberman with metastatic melanoma. She was admitted for management of abdominal pain and for end of life care. She was the first patient transferred from the IPU at Lieberman to the Hospice Pavilion. Her name was Utaiwon Maleegrai and she was my mother.