“I just want her to be comfortable.”
“How much longer will she be with us?”
“God is happy that my brother is with Him now. He is giving my brother a hug and is glad my brother is there to make Him laugh.”
Working in pediatic palliative and hospice care, I've seen that it can be easy for siblings to “get lost” amongst all that is happening when they have a brother or sister with life-threatening illness.
Given the understandably consuming emotions and frequently busy environment, siblings are often left to understand and process what has been experienced or witnessed on their own.
Sympathetic adults often feel at a loss regarding how to disclose a sibling’s illness, or anticipated death, or how to prepare a sibling for such a death — a death that they themselves are still trying to grasp and reconcile.
Susan was overwhelmed. Her job allowed her to work from home to care for her mother, Adeline, but juggling work tasks with her mother’s increasing need for care proved challenging beyond what she thought was possible.
Adeline had dementia and colon cancer. She had been a school teacher and in between moments of agitation she still had a warm, friendly tone to her now nonsensical speech.
As a music therapist for Adeline, I would visit her home, and Susan was always quick to apologize as their three large, joyful rescue dogs tripped over each other to greet me at the door, or tried to vocalize along with our music. Even with a caregiver eight hours a day and support from our hospice staff, Susan was hurried and anxious.
Susan grieved her mother’s cognitive decline. Growing up, she had admired her mother’s intelligence and was taught to value her own. Now that Adeline could no longer answer simple questions, Susan felt her mom was "already gone." She spoke of rare moments of increased lucidity like visits from a ghost — each time her mother was able to orient to reality and speak with her, she knew it may be the last time.
I’ve worked in the healthcare industry my entire professional life.
During my last year at Northern Illinois University, I completed an internship at a local nursing home and after graduation, became the director of social services there. This experience truly allowed me to foster my love of helping others and making a difference. Through the years, I found where my strengths lie in service to others. I achieved certification and received my Nursing Home Administrator’s License, quickly accepting an administrator position locally.
Shortly thereafter, my mother was diagnosed with a terminal illness.
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.
Hospice therapy pets, like the sweet miniature therapy horses that visit our Hospice CareCenters, bring love, laughter and comforting companionship to those on the end-of-life journey. Visits from these furry volunteers and their handlers provide patients with a welcome distraction from illness and help them feel more relaxed.
Becoming a volunteer for JourneyCare, doing pet therapy, has been a high point in my life.
It was more than two years ago when my mom, Rachel, had cancer that had advanced so severely, our family chose hospice.
I was 15 and remember her doctor recommending hospice, and then her sisters and my cousins coming over for a big family meeting. We all decided together that she would be cared for by JourneyCare.
Today I want to thank you, our donors, for your support and leadership. But when I think about what to share with you or how to show you the impact you make every day, my mind goes racing. That is because I have the honor of witnessing firsthand all the ways you help the third largest region in our country, the Chicagoland area and northern Illinois, and my mind is filled with so many wonderful examples of the difference you make.
But while I write this post, two stories keep coming to mind. The first is of an 11-year-old boy who lives in the far west part of our service region.
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.
As a hospice lead volunteer coordinator, I have the privilege of working with amazing people who do amazing things every day. These real life superheroes spend countless hours with our staff, patients and families, making a real difference in the final moments of someone’s life. Their super power is their ability to transform lives through compassionate care.
Caregiving in itself can be difficult. Ones desire to help, nurture and support a loved one at end of life is daunting. Most of the time, caregivers have made a decision to care either by desire, or necessity. In any case, unless they care for themselves, there is little they can do for their loved one.