I am nine years old, standing wide-eyed, frozen in the darkened hallway by the closed door to my parent’s bedroom. My mother is inside, gasping the words to the 23rd Psalm. Something is terribly wrong. Terribly wrong. I don’t know what it is, and I don’t ask. She’s been sick for more than a year, spending more time in bed as the months pass and recently, oxygen tanks were hauled up to her bedside.
You are dying.
I have reviewed the Cat Scans, spoken to the specialists, and studied the labs. There are many possible treatments that could be offered, but I fear they will not stem the course of all that is happening already. The tumor is too advanced, the metastases, too malignant.
I know there are many questions about chemotherapy, radiation, and feeding tubes. I would caution you to think of death as the inevitable endpoint. There are many things we can do between now and that endpoint. Some will increase your life expectancy, and some will cause pain and discomfort. The trick is to decide what is more important to you: quantity vs quality.
Today Jin Schnitzler, RN, and Chef Stephen Manno, Director of Dining Services in Glenview, share their story of how they worked as a team to help a patient and his wife experience a day of joy in hospice – all through the simple comfort of food. The duo is part of the team at our Marshak Family Hospice CareCenter in Glenview and both help spread the JourneyCare philosophy of treating the whole patient: body, mind and spirit.
Jin: When our patient arrived he could not swallow and had medical devices for nourishment. But he wanted to experience food, even if it was just to chew. So I got to talking with him and asked about his favorite food.
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.
Not long ago, I received a voicemail from one of my former bereavement clients. She thanked me profusely for all of my help and indicated that her life was decidedly better, and her outlook much more positive than it had been before we had started meeting. She, like many others, expressed during our first session sentiments such as, “I don’t know if I can make it through this;” “I’ve never gone through a loss like this before;” "I don’t even know what to expect.”
I met the revered artist Robert Guinan and his partner, Rita O’Hara, when he became a home patient with JourneyCare and I became his nurse case manager.
Bob had a fascinating life. Born in New York, he spent time in the military, then moved to Chicago and attended the School of the Art Institute. He then taught art at New Trier High School and the Art Institute, eventually becoming an independent artist. His art focused on tough scenes of Chicago’s West Side, street musicians and life along Maxwell Street.
He became especially famous in Europe. Bob’s son, Sean, explained to The Chicago Tribune his theory on the reason why:
This year marks our country’s 250th Independence Day. But when’s the last time something made you feel good and hopeful about our country? With the senseless violence and crazy political climate we’ve witnessed in recent months, it’s often been hard to feel positive.
But I found an antidote! Volunteer with Honor Flight.
As JourneyCare's We Honor Veterans program coordinator, I frequently interact with other veteran-serving organizations. And there’s no other volunteer experience quite like serving as a guardian for a veteran on an Honor Flight.
For over 30 years, three nonprofit, community-based hospice agencies separately served parts of 10 counties in the Chicago area and northern Illinois. In June 2015, these organizations combined more than 100 years of experience and expertise to become one: JourneyCare. Today, JourneyCare serves nearly 400 communities in those 10 counties. It’s been one year since we made that announcement ... and what a year it has been!
The JourneyCare Juniors and JourneyCare Youth Advisory Board participated in Global Youth Service Day, the largest day of volunteer service on the planet for kids and teens, with Planting Smiles. As part of Planting Smiles, the two groups prepared potted flowers and inspirational poems to be delivered to JourneyCare hospice patients and their families. JourneyCare has one of the few active Youth Hospice Volunteer programs in the nation, and Planting Smiles was made possible by support from HandsOn Suburban Chicago, Youth Service America and State Farm.
Today, JourneyCare Juniors Bridget and Annie, 10-year-old twin sisters, detail their experiences and discuss why they choose to volunteer: