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.
“The past is gone, the future is not yet here. If we do not go back to ourselves in the present moment, we cannot be in touch with life.” ̶ Thich Nhat Hanh
Before I came to work as a social worker at JourneyCare, I was a volunteer for many years. During that time, I visited with a hospice patient, who I will call Susan. Susan was in her 50s and had ovarian cancer. One day she shared with me that she had been an avid golfer and that she was feeling sad that she would never golf again. I asked her if she would like me to take her to the driving range and she lit up. Her family was pretty nervous about the idea, but Susan said to all of us, “I want to live until I die.”
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.
A total solar eclipse is one of nature’s most awe-inspiring events. In those brief enchanting minutes, the natural becomes the supernatural. The solar eclipse of 2017 was an incredible visual spectacle that many JourneyCare staff members shared as we gathered in The Waud Family Healing Garden and at our other locations. Not only did we share protective glasses so everyone safely experienced the eclipse firsthand, but we also took the time to meditate together focusing on our personal and communal growth.
"When we are no longer able to change a situation, we are challenged to change ourselves." - Viktor Frankel
My husband Victor Morris and I have years of experience working in special education, community mental health, and wellness. However, most of our experience on the topic of understanding caregiver stress comes from personal experiences. Early in life, we both witnessed loved ones in caregiver roles as Vic's mother was seriously ill when he was in grade school, and my sister was born with medical issues and developmental disabilities. Those early experiences were profound and made us who we are today. But our caregiver experiences didn't end there, and we both pursued professions which sometimes could tax us and deplete our energies.
We understand very well that parenting (especially children with special needs), taking care of ailing loved ones or working in care giving professions can sometimes cause us to forget our own self-care.
My career as a physician has paired me with many facets of medicine. I have explored private family practice, treated patients in nursing homes and even treated infants. Each of these are wonderful and worthy specialties, but I never felt the visceral connection to them that I feel with hospice and palliative care.
This work is a calling. And as JourneyCare celebrates our physicians this month, I celebrate my colleagues who also feel called to serve patients facing serious illness or the end of life.
Camp Courage is JourneyCare's annual grief support camp that helps children and teens cope with the death of a loved one while having summer fun. Entirely supported by charitable donations, the program helps campers deal with their loss while they enjoy art, music, sports and other activities with friends.
I cannot begin to explain how remarkable Camp Courage is for everyone involved in just a quick blog post. My intention here is to convey what Camp Courage meant to me as a camp counselor this summer, and what I hope the kids can take from camp to use in the future to help cope with the loss of a loved one. The most wonderful thing I observed was how these kids recovered the hope and confidence they may have initially lost along with their loved one.
I joined the JourneyCare Foundation five weeks ago, helping the Foundation raise funds to cover uncompensated care. Because I’m not a clinician and I don’t work in any of our other patient or family facing departments, I quickly realized that in order to be most effective, I needed to find a way to keep patients front and center in my mind and never lose sight of my “why” for being at JourneyCare. I brought in a photo of my Nana who passed away eight years ago after seven years of round-the-clock care by my family. We didn’t know about hospice or palliative care services. I joined JourneyCare because I want to help ensure other families don't go through such a physically and emotionally painful ordeal alone.
In my short time at JourneyCare, I’ve discovered that we go over and above to provide extra care and services that patients and their families don’t even realize they need or want, but which help provide comfort. One of these extras has been particularly impactful on me.
A nurse by trade long retired, I missed that special contact caregivers have with their patients. So when I heard of JourneyCare’s CNA Assist program ̶ to partner closely with certified nursing assistants to care for hospice patients ̶ I signed up immediately. From my very first shadow shift, I knew I had made the right choice.
I have the privilege of comforting patients with my presence, my skills and the assistance of a supportive staff from whom I learn something new every time I volunteer.