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.
In our fast-paced, success-based society, people often feel stigmatized for the need to seek out counseling support. There’s this expectation that people will “pull themselves up by the bootstraps,” and the desire for help is deemed a failure. Men in particular are taught early on to withhold their emotions, and those who remain stoic in the face of adversity are considered heroic. Although we each carry a unique perspective, there are certain universal experiences that alter the course of our lives and inevitably affect our way of thinking.
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.”
Advance care planning is something I'm passionate about. As an Advanced Care Planning Advocate for JourneyCare, I am very lucky that my job allows me to do something I believe in so strongly.
An important part of my work is to bring focus to National Healthcare Decisions Day, which is approaching on April 16. This nationwide initiative exists to inspire, educate and empower you, as well as your healthcare providers, about the importance of advance care planning.
This year’s theme is “It Always Seems Too Early, Until It’s Too Late.” I have witnessed the truth of this slogan firsthand.
Make a difference: volunteer.
I know! We’ve all heard the platitudes. How the actions of one person can change someone’s life, their community, the world. Really? Let’s be honest, isn’t volunteering just something nice people do so they can feel good about helping? I mean, what impact does it really have?
In a word – enormous and invaluable. (Ok, I know that’s two words...)
In my family of origin, I saw illness from an early age. My sister is developmentally challenged and she also has severe epilepsy. My father was diagnosed with Parkinson’s disease when I was in my early 20s. This was a prolonged illness that took its toll over the last 20 years of his life. My whole life I witnessed my mother as the caregiver for my sister, and then later for my father. After my father passed, my husband and I found an excellent group home for my sister. We did this in hopes to give my mother a much-needed break from the role of caregiver, and to allow my sister to live as independently as she possibly could. Finally, I would have my mother back as her relaxed and fun-loving self. Finally, she would be free to have more enjoyment and freedom in her life!
Something unexpected occurred, however.
Like the Bee-Gees famously said: You should be dancing! That advice will be especially true on April 2, when JourneyCare hosts our annual Decades Dance that will celebrate the grooviest era of them all, the 1970s.
Of course, you should put on your boogie shoes so you can enjoy a night of music by Libido Funk Circus, cocktails, dinner, auctions and even prizes for the grooviest outfits.
But the most important reason you should head to this boogie wonderland (which will be The Stonegate in Hoffman Estates) is to support JourneyCare’s All About Kids pediatric care program.
I have been so fortunate to be a social worker and now a field team manager for JourneyCare. The patients and families I meet truly affirm why I was drawn to this work. Some of the most challenging circumstances I have experienced working with family members became some of the most exciting, compelling and educational cases I have ever had the privilege of working on and I consider them “gifts.”
In my five years with JourneyCare, there have been so many moments that stand out and truly touched my heart...moments made possible by care teams working together creatively and pooling resources, all to make a difference, big or small, for patients and families.
Children can, and do, grieve and children process their grief through play. Two concepts that my training has taught me and two concepts that I have witnessed firsthand countless times as a child life specialist. Yet, somehow, these two concepts became more real to me than they ever were as I sat with a five-year-old sibling of a three-year-old hospice patient in her backyard, providing support as she learned that a frog she caught and had been caring for had died.
She talked about playing with him the day before, how he seemed to really enjoy the dirt, and how sad she was that he had died. She cried as she talked about how much she would miss him; kissed him as she talked about saying goodbye. We picked flowers, prepared his resting place, and said what we would miss about him. Throughout the interaction, she discussed the parallels between her brother’s anticipated death and the death of her frog. She cried for both as she attempted to reconcile what was to come.