By Allison J. Applebaum, PhD, New York, New York, USA
When I began my postdoctoral fellowship in Psycho-Oncology at Memorial Sloan Kettering Cancer Center in 2010, I was working primarily with patients with advanced life limiting cancers. What was so striking to me about these patients’ narratives was that, as opposed to focusing on their own mortality, they were focused on their parents and partners and children and siblings and friends, the individuals left in the waiting rooms and left at homes. Individuals who they identified as the linchpin of their care, and who would be most deeply impacted by their eventual deaths.
I realized back then that even though cancer care – and healthcare more broadly – was increasingly relying on family caregivers to shoulder tremendous responsibilities, and even though the scientific literature had already well documented the distress experienced by caregivers, there were no targeted support services for caregivers in any cancer center in the country.
And so, a year later in 2011 I founded the Caregivers Clinic at MSK, the first targeted mental health clinic for family caregivers in the country. The mission of the Clinic is to assure that no caregiver experiencing significant distress as a result of their critical role goes unidentified of necessary psychosocial support.
That same year, my caregiving journey for my dad, Stan Applebaum, began. My dad was diagnosed with Lewy Body Disease (or Lewy Body Dementia, as it is also called), which in him presented in fluctuations in automatic functioning and consciousness. He would have sudden drops in blood pressure and temperature to near hypothermia levels, and he would hallucinate, anywhere from a few minutes to a few hours, occasionally an entire day, and, once, nearly a week. My Dad’s diagnosis came after a medical mistake put him into a coma. He never fully recovered physically and from that point until his death in 2019, he was “full assist,” and required help with all ADLs (activities of daily living) and IADLs (instrumental activities of daily living). When he wasn’t hallucinating, however, my dad retained his short term, long term, and working memory, his curiosity and zest for life.
Dad was a prolific musician – best known for his arrangement and string interlude for Ben E. King’s Stand By Me – and wanted to continue to write music and be creative despite his physical and cognitive limitations. It became clear to me, however, during his coma and each hallucination, that without me by his side to serve as his eyes, ears, and voice, there would be no way for any members of the passing medical teams taking care of my dad to truly know Stan Applebaum, to know what mattered to the man lying on the stretcher in front of them. It was also clear, despite my professional experience in healthcare, that navigating the challenges of caregiving would be profoundly difficult, and that my experience was just a microcosm of challenges faced by the 53 million U.S. caregivers.
Inspired by my dual experience as a caregiving scientist and family caregiver, Stand By Me: A Guide to Navigating Modern, Meaningful Caregiving is a narrative nonfiction book that seeks to give readers a “cliff notes” version of the type of support they might receive should they come to the Caregivers Clinic at MSK. Intended for caregivers of patients with all illnesses, disabilities, and conditions, Stand By Me covers topics ranging from sitting with uncertainty and managing anxiety, and engaging in advance care planning discussions, to implementing home care, navigating grief, and connecting to meaning and purpose despite the challenges of caregiving. Each chapter weaves in my personal experience as well as case examples from caregivers seen at MSK, and provides concrete tools, strategies, and guidance that can help you navigate the challenges of your caregiving journey, whatever your unique journey may bring.
About Dr. Allison Applebaum
Dr. Allison Applebaum is a caregiving scientist, writer, researcher, speaker, and advocate. She is a Professor of Geriatrics and Palliative Medicine and the Director of the Center for Caregiving at the Mount Sinai Health System. She was previously the Founding Director of the Caregivers Clinic at Memorial Sloan Kettering Cancer Center, the first program of its kind in the United States to provide comprehensive psychosocial care to family members and friends of patients who are in the caregiving role. Dr. Applebaum’s program of research focuses on the development and dissemination of supportive services for family caregivers. She has published over 100 articles, reviews, and book chapters on these topics, and is the editor of the textbook Cancer Caregivers (Oxford University Press, 2019). Dr. Applebaum has received competitive funding for her research, including awards from the National Cancer Institute, the National Institute of Nursing Research, and the American Cancer Society. She is also the author of the recently published narrative nonfiction book, Stand By Me: A Guide to Navigating Modern, Meaningful Caregiving (Simon Element, 2024).
Connect with Dr. Applebaum
About the Moderators
About the Podcast
AlzAuthors is the global community of authors writing about Alzheimer’s and dementia from personal experience to light the way for others.
Our podcast introduces you to our authors who share their stories and insights to provide knowledge, comfort, and support. Please subscribe so you don’t miss a word. If our authors’ stories move you, please leave a review. And don’t forget to share our podcast with family and friends on their own dementia journeys.
We are a 501(c)(3) charitable organization totally reliant on donations to do what we do. Your generosity will help cover our many operating costs, which include website hosting and maintenance fees, service charges to keep things running smoothly, and marketing expenses to promote our authors, expand our content, improve our reach, and more. Our ongoing work supports our mission to lift the silence and stigma of Alzheimer’s and other dementias. To sustain our efforts please donate here.
Ideas and opinions expressed in this podcast belong to the speakers and not AlzAuthors. Always consult your healthcare provider and legal and financial consultants for advice on any of the topics covered here.
Thanks for listening.
We are a Whole Care Network Featured Podcast
Proud to be on The Health Podcast Network
Find us on The World Podcast Network and babyboomer.org
Want to be on the podcast? Here’s what you need to know
We’ve got merch! Shop our Store
