I first met Robin, a 53-year-old ALS (amyotrophic lateral sclerosis) patient, when JourneyCare began caring for her about two years ago. I was welcomed in Robin’s home to make weekly visits. I instantly hit it off with Robin and always look forward to my weekly visits with her.
The French writer and philosopher Albert Camus once wrote, “In the midst of winter, I found there was, within me, an invincible summer.” For those who are grieving the loss of a loved one, especially as winter and the holiday season approaches, it can be challenging to find that “invincible summer” through one’s anguish and tears. When burdened with sadness and pain, how do we find that which comforts and calms us? I believe the foundation of the resilience of which Camus writes is hope.
During this Pastoral Care Week, I would like to celebrate the chaplains at JourneyCare and around the world for all the care that you provide to people and families in the various ways you serve. As I reflect on my own pastoral care journey, I am appreciative of the profession I feel called to do.
What do I love about hospice care? I love that it is not specifically focused on death, but on the life of the patient. As a chaplain, this has afforded me the opportunity to hear each patient's life journey. It is in this sharing that I have gained the opportunity to celebrate patients’ lives in the present. Listening to the patients and their families allows their life experiences to be honored. It also has allowed me the opportunity to hear how their lives connect the past, present and their desires in their final months and days. These stories have really influenced my calling as a chaplain.
Mary and her husband Bob are, it seems, glued at the hip, two bodies with one soul. They remind me of my parents who are also in their early nineties, failing in health after living fulfilled, long and good lives, coming from similar backgrounds, with A LOT of kids (eight), a Catholic upbringing and of course, hoping to live forever.
As her massage therapist, I visit Mary, who has congestive heart failure and dementia. Mary has been declining fast and losing her hearing, so I often place my iPhone music right down next to her so she can feel the vibrations. She always smiles. I tell her at each visit that she looks just like the gorgeous Hollywood diva Lana Turner, and she smiles again.
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.
I will always remember my hospice patient’s dog, Jack. Jack was a medium-sized, furry mutt, with all the friendliness of a well-loved and trained dog. My patient was a man who was deeply loved by family and friends... and his dog, Jack.
As the patient was dying, Jack was lying awake with his head on his front legs, under the patient’s bed. The family told me Jack had been there over 24 hours and was refusing to come out to eat or drink. Jack and his human friend were inseparable in life. And Jack stayed there, under the patient’s bed, until the funeral home arrived.
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.