This episode is sponsored by Authentic Presence training for healthcare providers from the Spiritual Care Program. You can receive a certificate in contemplative end-of-life care by completing this series of three courses, including an 8-day residential immersion retreat. Highly recommended!
Today Julie Saeger Nierenberg and Victoria Brewster join me to talk about their book Journey’s End: Death, Dying, and the End of Life, which is a compilation of quotes, stories and resources that look at death from various perspectives. In our conversation we discuss:
How Julie and Vikki ended up collaborating on this book
How the stories in the book are organized:
Personal Stories of Professionals and Lay People
Professional Support and Caregiving Perspectives
Funeral Home, Post-Death and Alternative Burial
Grief and Bereavement
How they chose the contributors for the book
The feedback they’ve received from readers
How this book of stories can be useful in many settings for both professionals and lay people
How to submit a story for the next book in the series which will feature various cultural, ethnic and religious perspectives on death and dying
Learn how Blyth Lord coped with the illness and death of her young daughter and went on to create the Courageous Parents Network.
In this episode I share an interview with Blyth Lord whose daughter Cameron died before the age of two of Tay-Sachs disease, a rare genetic disorder. She describes how she coped with her grief and established a non-profit to help other parents who are caring for children with life-limiting illness.
On the evening of August 21st I’ll share a conversation with hospice and palliative care physician Dr. Ira Byock about the 20th Anniversary of his groundbreaking book Dying Well. Join us for this LIVE event where you will be able to chat with Dr. Byock and ask questions about his books and his work. Let’s show our gratitude for his dedication to improving the way we care for people at the end of life. Learn more and register here. (It’s free and you’ll receive the replay if you can’t join us on the 21st.)
This podcast is supported through the generous donations of “patrons” who chip in $1 or $2 per month to help cover the costs of production. A HUGE thank you to all of you who are helping out! Our next Hospice Happy Hour will take place on Friday August 25th (you’ll receive all the information by email.) If you’d like to become a donor go to Patreon.com/eolu to learn more!
I chose to share today’s interview because of the very recent death of Charlie Gard, an 11-month old boy in England with a rare, inherited mitochondrial disease. His terminal condition sparked a controversy that spread around the world when the hospital providing his care proposed that Charlie’s life support be terminated. Even the Pope and President Trump weighed in on the issue that went to a high court to decide little Charlie’s fate. Ultimately his parents yielded to the court’s decision and Charlie died on Friday July 28th.
This heartbreaking story points out how nearly impossible it can be for parents to make life-and-death decisions for their children. In this interview my guest Blyth Lord experienced a similar tragic situation when her baby daughter was diagnosed with Tay-Sachs disease, a rare genetic disorder. Blyth shares how she coped with the diagnosis and the remaining months of her daughter’s life, as well as her subsequent grief.
Blyth went on to found the Courageous Parents Network and to contribute to the Pediatric Starter Kit for the Conversation Project. You’ll learn:
What factors are most helpful to families coping with the devastating loss of a child.
The benefits of Pediatric Palliative Care from a parent’s perspective.
How the Courageous Parents Network is offering support to parents caring for terminally ill children.
How the Pediatric Starter Kit from The Conversation Project is helping parents have important conversations with their ill children.
Blyth Lord is the founder and Executive Director of Courageous Parents Network, a nonprofit focused on improving the experience of parents caring for children with life-limiting illness through education, advocacy and parent-to-parent support. Blyth is also the Executive Director of the Cameron and Hayden Lord Foundation, a small family grant-making foundation whose mission is to advance pediatric palliative care in the United States, as well as fund research of therapies for lysosomal storage diseases. Blyth’s daughter, Cameron, and nephew, Hayden, died of Tay-Sachs disease in 2001. In the years following, Blyth has promoted the needs of families caring for children with serious illness and how providers can best meet these needs. Blyth is also co-chair of the Parent Advisory Group for the AAP’s Section on Hospice and Palliative Medicine.
Blyth sits on the board of National Tay-Sachs and Allied Disease and on the board of The Children’s Room, a bereavement support program for young families who have lost parents/siblings/children.