S4E37: A Family’s Perspective on Palliative Care – with Connie Baker
Connie Baker – co-creator of the Wong-Baker pain scale (the one with the faces) – has had her own journey with cancer and now her father’s advanced cancer. Learn about her experience with palliative care and how people have a voice in their care.
We also are rebroadcasting one of our very first episodes: “What is Palliative Care?” This is one of our most foundational podcasts – we discuss how important palliative care is through the course of an illness and how it differs from hospice. Please take a listen and see how this can help you in your life and those around you.
Connie was diagnosed with breast cancer. She also helped her family navigate her father’s advanced cancer. In this interview with Marianne, she talks about her journey with a palliative care consult and thoughts about palliative and hospice benefits.
If You Had Three Months Left to Live…How Would It Change Your Perspective?
Connie talks about a program she is involved with called the Conscious Dying Institute. Whether you’re a caregiver, family member, or simply exploring your own relationship to death and dying, their course offers a new lens through which to experience the end-of-life process. It deeply examines spiritual, physical, emotional domains. There are also certification opportunities for death doulas and end-of-life professionals and educators.
Connie on How to Build Resilience and Thrive
In Stay On: Build Resilience and Thrive While Facing Cancer, Connie guides patients, and their care providers, through the often unnerving maze of health care choices that arise with a new cancer diagnosis, helping them learn how to thrive with grace and ease amidst inevitable change. You can learn more on her website, or find her book on Amazon here.
Connie also mentions a book called I’ll be Right There– a manual for caring for aging parents. The book description says this: “Pulled in a hundred directions at once, answers need to be easy to find and access. IBRT is a guidebook to help get from day one (“I’m worried about mom/dad”), to the end and beyond (“What are we supposed to do with all this stuff????”) of caring for a loved one.
“Get ahead of last minute decision making to reduce stress, make things easier with step by step guides and checklists, access resources you might not know exist, find free help, get siblings to work together (even if you live miles or continents apart) and more. This comprehensive workbook is filled with stories and humor (you are not alone!) between worksheets and places to gather and store important information for each stage of your parents’ aging. You only need one chapter at a time, but the others are there when you (or your neighbors or friends) have questions.”
What Is Palliative Care?
A fireman wrapping a red blanket around a survivor. Palliative comes from Latin “palliare” – or “cloak”
If you watch any newsreel of trauma or disaster victims, you will surely see somewhere a responder or volunteer draping a blanket over injured, wearied, or shell-shocked victims. There is something healing in the simple act of draping this cloak around someone.
The word “palliative” comes from palliare – the Latin word for “cover” or “cloak.”
The word “palliative” comes from palliare – the Latin word for “cover” or “cloak.” Palliative care extends the same comfort to patients that the ubiquitous blanket does for disaster victims.
Palliative care is the management of symptoms and providing comfort to patients with life-threatening illnesses and their families. This model of care starts at the time of diagnosis of any life-limiting illness and continues throughout the disease. This episode discusses the concept of palliative care, how it integrates with medical care, and the differences between palliative care and hospice care.
Palliative care is the management of symptoms and providing comfort to patients with life-threatening illnesses and their families.
Palliative Care Resources:
GetPalliative.org – Information on all the aspects of Palliative Care
Everyone Dies (and yes, it is normal) is a story about a young boy named Jax who finds something special on the beach where he and his grandpa Pops are enjoying a wonderful day. Pops helps Jax understand that death is a normal part of life. This book provides an age appropriate, non-scary, comfortable way to introduce the important topic of mortality to a preschool child. Its simple explanation will last a lifetime. Autographed copies for sale at: www.everyonediesthebook.com. Also available at Amazon
Mourning Jewelry
We offer a way to memorialize your loved one or treasured pet with a piece of handmade jewelry. When people comment on it and the wearer can say for example “I received this when my mother died” which opens the conversation about this loss. All our jewelry is made with semi-precious stones and beads, vintage beads, and pearls. You can choose between earrings or bracelets and the color family. Learn More
