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.
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.
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.
As a Marine veteran who served two tours of duty in the Vietnam War, I’m well-aware of the sacrifices our men and women make to serve their country in the armed forces. And as a hospice volunteer who works primarily with veterans, I’m able to express my gratitude to veterans for their service in multiple ways.
Time visiting with a veteran and his or her family ̶ the sharing of stories and experiences ̶ are some of the most precious moments in my life. The Marine Corps motto is Semper Fi, meaning always faithful to God, country, and your fellow marine. Well, JourneyCare's volunteer program enables me to carry out that mission not only to other marines but to all veterans.
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.