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.
Take a moment to recall how you became part of our JourneyCare community.
Maybe you heard of us at a community education event on advance care planning. Or you learned about JourneyCare through a friend or neighbor who was touched by our amazing team of employees and volunteers. Or maybe you simply stumbled upon this blog and became inspired to engage.
However you joined our JourneyCare community, it was likely thanks to word-of-mouth and personal experience. As a friend of JourneyCare today, you have a personal understanding of the exceptional care and support we provide for patients and families dealing with serious illness and end-of-life issues.
My family was thrown into a crisis when my mother suddenly collapsed at home. She experienced multiple, catastrophic health events that lasted for more than a year. She ended up in a viscous cycle of recurring pain, hospitalizations, surgeries, complications, re-hospitalizations, infections and – just when we thought it couldn’t get worse – amputations to her lower extremities.
We ended up in just about every setting of care in Chicago, none of which could address all her needs. At one point, we brought her home with 24-hour care and were outraged to learn we had to pay $15,000 per month out of pocket because Medicare didn’t cover it.
We wished we would have been more educated and better prepared.
Massage therapy has proven to be very beneficial for hospice patients and can lessen the need for pharmaceutical intervention. Massage therapy can provide immediate relief of pain, discomfort and anxiety caused by symptoms such as contractions, stiffness, shortness of breath, nausea, cramping and muscle spasms while simultaneously increasing feelings of peace and comfort. The simple act of human touch is one of the most ancient and effective ways to relieve discomfort in the body. Providing massage to the dying reinforces the wholeness of the individual regardless of what is happening to their body.
As a massage therapist for hospice patients, I went to see a woman with cancer. She was a published poet, very creative and very insightful, and the more I got to know her the more remarkable I felt she was.
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.
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.
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!
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.
On a recent visit to Journeycare, we stood outside the doorway of a patient and asked the family if he wanted to visit with Mystery, one of our miniature therapy horses.
We were told the patient really loves animals, but that they were uncertain whether he was prepared for it at this time. Encouraged to ask the patient himself, we walked into the room. The man slowly opened up his eyes.