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.
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.
Choosing hospice care doesn’t mean giving up hope — you are in fact redefining it.
While those who choose hospice accept that further medical treatment almost certainly won't help them, they also choose to redirect their hope into mending and restoring relationships, spending quality time with those they love, and finding peace and comfort.
A few years ago, while watching 'Law & Order,' I thought, “I’d make a terrible witness; I never notice anything.” So I decided to pay closer attention to my surroundings, at least while walking my dogs in the woods. This would help my art, too, I felt.
At first, I noticed trees, discovering that, for me, trees with broken or damaged bark offered more interesting compositions. But I gradually realized that a scarred trunk and missing bark exposed the beating heart of the living creature, and its vulnerability. I began to feel compassion and affection for the trees in the forest preserve.
JourneyCare volunteer Steve Crews was a lifelong writer and communicator. He worked as a reporter with the Chicago Tribune, deputy press secretary with former Chicago Mayor Jane Byrne, an executive with two international public relations firms, and head of communications with Hallmark Cards and later, with Alberto Culver Corp. He was an Army vet, married and the father of two.
Steve was a much beloved JourneyCare volunteer who was always willing to do anything we asked of him. He was a patient care volunteer, a reception volunteer at two different desks on two different days, sat on our Veterans’ Advisory Council, helped at community health fairs and wrote numerous posts for our JourneyCare blog.
Steve died in November in our care, with friends and family nearby.
Below is the last piece Steve wrote for us, which his family is allowing us to share in his honor.
He is greatly missed.
Like My Uncle Ed
When I die, I want to go like my uncle Ed, a quiet guy with a blue-collar job at a local newspaper and a love of fresh water fishing. He was a man who never got excited. Pleased? Impatient? Sure. He was not without emotion. But excited? Not that I ever saw. Still, sitting in his chair, sipping an Edelweiss beer and reading the paper, he was always in control. If a problem arose, he was the one who solved it.
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.
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.
It’s the last thing hospice patients do before they are discharged from service.
Lilian, Mary, Emmett and so many more.
As hospice nurses, we all have patients who have touched our hearts in profound ways.
Many folks think hospice is a sad thing. It’s not though. The grief families experience comes from losing these beautiful souls and anticipating a world without their jokes, their laughter, and their wisdom gained from a lifetime of experience. It's not sad for me though ― each is a celebration of a life and the end of one soul's human experience. But hospice nurses experience the loss in some ways as well. We all have different ways to cope too.
If you knew today would be the last day of your life, how would you live it?
Many might imagine themselves emptying their bank accounts, splurging on an over-the-top dinner and night of frivolity in a last grasp at indulgence. Others possibly envision doing something taboo because they wouldn’t be around to suffer the consequences. Many see themselves scrambling to check off items on their “bucket lists.”
I think these are fantasies. Daydreams. In fact, I believe most of us actually would spend our final 24 hours with just a little bit more of what we already have. A little more love. A little more time spent with friends. A little more family. I don’t think we would change much. We probably would call everyone we cared about and tell them, “I love you.”
Hospice care offers us this closure.