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.
Pelayia Limbos was an extraordinary artist. She was also my best friend, as well as my mother. Her paintings and photography reflect the many facets of her "core being." She was brilliant, pioneering, solid, modest, gentle, soft spoken, subtle, complex, honest and to put it simply – exceptional.
Her style was definitely her own. She was an individual, and she was completely authentic. I found it hard to imagine, however it’s true, that my mom did not believe the masses liked or appreciated her artwork! When I reminded her that someone had commented on the absence of a newsletter issue, or that a friend had just requested to be on her newsletter list (or when the deadline was missed, due to illness or life ... or that people were inquiring/still awaiting its arrival) … or when I tried to remind her that people purchased her paintings from her original art show many years ago ... or when I reminded her, “that it is always an honor... whenever people choose to hang an artist’s work in their home”... she consistently, modestly replied, “Oh, they are just being kind.”
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.
One of the highlights of my career as a Massage Therapist and member of JourneyCare's Integrative Therapies team was also the most challenging of all. My husband and love of my life, Peter, was the patient, unfortunately, at the young age of 64. It tested all my strength, boundaries, love and belief in God and this world.
Peter inspired me to become a massage therapist and always supported and loved therapeutic massages, which he always insisted I do to practice on him (in the beginning) and then after that because it helped him so much.
I like to talk. I talk a lot. Many of my coworkers know this already. Sometimes I talk because I have something to say. Sometimes I talk to fill space and silence.
I like to listen. I listen a lot. I love to listen to the stories and the memories I am privileged to hear from patients, families, facility staff, caregivers, and my coworkers. Hopefully my coworkers would tell you I listen too. Hopefully.
What happens when there isn’t much to say? What happens when words fail us or simply cannot adequately express what is happening or what someone is feeling? And, if no one’s saying anything, what is there to listen to? This is a time for presence.
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.
Bill came to JourneyCare several months ago and was initially very hesitant to accept our hospice team into his life and his home. The reason for this was that Bill’s wife had died two years before while on hospice care, but she only lived for a few hours after being admitted. In addition, Bill is a very private and proud man and later said he sometimes is embarrassed by his symptoms. After the first few weeks of routine visits, friendly and caring encouragement, and his care team responding to his needs and wishes, Bill began to accept the team into his life.
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.
Who amongst us feels like a superhero at the end of the day? Do you ever feel like we must have superhero powers to manage juggling all that is on our plates, including all our daily professional and personal responsibilities, not to mention all the emotions included in our day-to day-lives?
Well, I stopped asking myself that question. I stopped thinking in terms of how busy am. Instead, in the new Jewish year as I try to be more introspective, I’m going to try to stop and ask myself what have I missed in the process of my juggling act. In terms of hospice patients, was there something I missed? I will remind myself to ask what stumbling blocks are in the way of a patient’s ability to feel like a superhero and how can I help remove them.