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.
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.
The CBS Sunday Morning show featured Dennis and Maggie's story this Sunday, Valentine’s Day.
“No thank you,” I told Cathy Fine, a bereavement counselor from JourneyCare, “I have no interest in counseling. I’m a trained social worker who has helped many others deal with loss and I certainly can handle mine.” I informed Cathy that I knew what to expect in the stages of grief and that I had my adult children to comfort me. I didn’t need anything else. I couldn’t have been more wrong.
My wife, Maggie, died in our home after three weeks of hospice care. We had been married for 41 years, 2 months, 20 days, 9 hours, and 50 minutes and we were blessed with four children and seven grandchildren. When Maggie’s life ended, my life stopped.