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.
“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.
Today on Black Friday, many of us are searching for the very best bargains we can find on our holiday gifts, but I hope many of you will also join me in extending the “thanks” and the “giving” of yesterday a bit longer.
Since joining JourneyCare early this year, this November is the start of my first holiday season as President of the JourneyCare Foundation. This month is also my first time celebrating National Hospice and Palliative Care Month. Both events have created a valuable opportunity to reflect on the amazing care our JourneyCare teams deliver to our patients and their families every single day.
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 daughter Olivia died last December, just a few days before her third birthday. We had been working with JourneyCare for about a year and my entire family is so grateful to have had them in our lives. Hospice gave us a safe and trusting place to talk about all the difficult things that would arise in Olivia's life. It allowed me and Olivia's dad to have ongoing conversations about what kind of life we wanted for her, and it empowered us to do things that we might not have done with her had we never met her JourneyCare team. We were able to go on trips with her ― even taking her to SeaWorld because she loved the aquarium.
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.
I read. And I write, but not nearly as much as I read. And sometimes I read books about dying. I recently read "When Breath Becomes Air" by Paul Kalanithi, which has been on The New York Times best seller list for several weeks. It is written by a neurosurgeon regarding his diagnosis with terminal lung cancer.
I flagged several lines in the book because they resonated with me.
The first part of the book is a reflection on his life in the medical field.
· On page 80: “Learning to judge whose life could be saved, whose couldn’t be, and whose shouldn't be requires an unattainable prognostic ability.”
· On page 102: “How little do doctors understand the hells through which we put patients.”
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.
I am so blessed to be working here at JourneyCare. My first two months have been filled with one amazing day after another. I am humbled by the heartfelt work I have seen firsthand and I am so proud and thankful for everything I have experienced thus far.
I joined JourneyCare in December, 2015, as Senior Director of Service Excellence. In this role, I’m collaborating with virtually every aspect of the organization; with a focus on developing a culture filled with programs and values and a walk-of-life that prepares us to deliver service excellence filled with magic moments.
We all have unique journeys to share that somehow guide us to where we are today.
It’s pretty much a fact that bitterly cold winter days are made infinitely better by a bowl of soup, a warm blanket and a game of cards. JourneyCare’s third annual Soup & Stories volunteer service project, which takes place over the Martin Luther King, Jr. Holiday weekend, exists to provide these very items to hospice patients and their families.