Neal Shah’s journey, showcases the impact of caregiving on individual lives and the broader healthcare system. Raised in a close-knit immigrant family, Neal's values were shaped early by the examples set by his parents and grandparents. After building an impressive career in finance, a series of personal experiences as a caregiver—first supporting his grandfather through end-of-life care, then facing his wife’s severe illness—transformed his outlook and priorities. He became intimately aware of both the emotional toll and practical challenges caregivers face and the systemic flaws that make caregiving in America so difficult.

These experiences motivated Neal to leave his high-powered finance career to focus on creating social impact. He founded Carry Ya, a not-for-profit project that connects families in need with qualified, motivated student caregivers at affordable rates, disrupting the expensive, often impersonal agency model. 

Neal is also the author of the book "Insured to Death," which exposes the failures of the American health insurance system, and he launched Counterforce Health, an AI-powered platform that empowers patients and caregivers to fight insurance denials. Neal’s innovative, empathetic responses to systemic challenges underline his commitment to honoring caregivers as the backbone of the healthcare system and ensuring that their support, as well as that of care recipients, is financially and emotionally sustainable.

About Neal:

America's Chief Elder Officer. CEO of CareYaya Health Technologies and Chairman of Counterforce Health. Working hard to improve healthcare. Author of #1 Bestseller in Health Policy, "Insured to Death: How Health Insurance Screws Over Americans - And How We Take It Back". After a successful career as a $250 million hedge fund manager, deeply personal caregiving experiences inspired a pivot to social entrepreneurship. Now, determined to transform care delivery through technology.

Building a rapidly-growing tech startup to expand access to affordable care. Pioneering cutting-edge AI applications and neurotechology to fundamentally elevate quality of life for those needing care. Motivated by creativity and humanitarian progress.

Leveraging experiences guiding multi-billion dollar investments to make an impact on improving care for our most vulnerable populations. Leading with both heart and analytical rigor.

Building unrivaled technical capabilities and strategic partnerships to establish CareYaya as America's leading launchpad for care innovation. Together, let's build a better future for care! 

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Zack Demopoulos’s story begins with his upbringing as the proud son of Greek immigrants, whose journey to the United States instilled in him a deep sense of gratitude, resilience, and responsibility. He shares how his family’s experiences shaped his values and work ethic, from working in his father’s restaurant as a teenager to pursuing higher education and a successful corporate career. Zack’s life took a dramatic turn in 2006 when he was suddenly thrust into the role of caregiver for his father after a major stroke, all while balancing a demanding job and a young family of his own.

Throughout the episode, Zack candidly discusses the emotional, logistical, and financial challenges of caregiving, including the complexities of sibling dynamics and the importance of open communication and planning. He reflects on the mistakes and lessons learned during his father’s illness, such as the need to involve siblings, have difficult end-of-life conversations, and seek out resources—even when they seem limited. Zack’s journey didn’t end with his father; he later became a key support for his mother, applying the hard-earned wisdom from his earlier experiences to ensure her well-being and dignity.

Now, Zack channels his expertise and empathy into advocacy for working caregivers. Drawing on his background in HR, home care, and personal caregiving, he collaborates with his partner Selma to develop resources and support systems for employees balancing work and caregiving responsibilities. Zack’s story is a testament to the resilience of caregivers and the critical need for greater awareness, support, and compassion in both families and workplaces.

About Zack:

Zack Demopoulos along with his partner Selma Archer founded ieadvocates llc, or Invisible Employee Advocates, a consulting firm created to support working caregivers by working with their employers.   He has over 36 years of diverse experience working in the corporate and small business environments. His expertise spans across sales management; executive leadership; human resources; diversity, equity, and inclusion; small business; board leadership; and caregiving.  Zack along with his wife Phyllis founded and operated a home care agency for 13 years, helping over 500 families care for their family loved ones, and hiring over 700 professional caregivers to provide that care. 

Zack is a caregiver advocate as well as a caregiver--long distance for his mother who is in a nursing home in Charlotte NC.  He commutes 1-2 x every four months to spend time with her and be her advocate.  

Zack with his wife, Phyllis, reside in New Jersey and spend significant time with their family who live nearby and include 2 rescue dogs, three adult children, their spouses, and 3 grandchildren.

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With a lifelong passion for nursing, Donna Steigleder’s journey began in her childhood and evolved into a career in healthcare, where she gained a wealth of experience across various medical settings. Her personal caregiving story started early, as she recognized and advocated for her daughter’s mental health needs at a time when such issues were often dismissed. Despite resistance from family and medical professionals, Donna’s persistence ensured her daughter received the care she needed, ultimately enabling her to thrive as an adult and nurse herself.

Donna’s caregiving responsibilities expanded over the years, encompassing her first husband, who struggled with denial about his MS diagnosis, and later her mother, who battled cancer. Balancing full-time work, Donna managed complex medical care at home, often feeling isolated and emotionally compartmentalized to cope with the relentless demands. Her experience as a director of employee relations gave her unique insight into the challenges working caregivers face, and she advocated for flexibility and support within her organization.

Recognizing the lack of accessible resources for caregivers, Donna created the “Healthcare to Home Care” website, a comprehensive hub for practical information and community connections. She also launched the “Compassion Mission” initiative, encouraging churches to support caregivers and those in need within their congregations. Donna’s story is not only one of personal sacrifice and strength but also of transforming her experiences into resources and advocacy to uplift others navigating the caregiving journey.

About Donna:

Donna Steigleder, a native of Henry, Virginia, began her career with a passion for writing and leadership, graduating in the top 1% of her high school class. After earning her nursing diploma, she obtained her Bachelor of Science in Nursing. Her first job as a nurse clinician provided a broad range of experience, leading to her promotion to Director of Human Resources. After a divorce, she became a single mother and took on a second job to support her family. Following her marriage to Lynn Steigleder in 1997, she transitioned to working from home to care for him while continuing her HR duties until her retirement in 2018. Now retired, Donna has combined her personal caregiving experience with her professional healthcare background to create Healthcare to Homecare, a website offering resources for family caregivers. She is also an advocate for churches to provide support to the sick and needy in their communities.

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Jenn Fredericks is the featured guest in this episode, sharing her deeply personal journey as both a long-term patient and a dedicated caregiver. Diagnosed with chronic kidney disease as a teenager, Jenn received her first kidney transplant from her father at age 15, and later a second from her husband’s twin brother. Her life took another challenging turn when her adopted daughter was diagnosed with a brain tumor at the age of eight. Jenn describes the overwhelming responsibilities of managing her own health while navigating her daughter’s complex medical needs, all while supporting her family and working through the emotional toll of caregiving.

Throughout the episode, Jenn offers candid insights into the realities of caregiver exhaustion, discussing moments of vulnerability, anxiety, and the struggle to maintain resilience. She emphasizes the importance of taking intentional pauses—physical, mental, emotional, and spiritual—to recharge and remain present for loved ones. Drawing from her experiences, Jenn has developed resources such as a caregiver exhaustion quiz and founded the Carewell Circle, an online community for caregivers seeking support and connection. Her story is a testament to the power of self-awareness, community, and proactive self-care in the face of ongoing caregiving challenges.

About Jenn:

Jenn Fredericks understands the unique challenges of caregiving from a deeply personal perspective. For over 30 years, she has navigated her own health journey with chronic kidney disease, which has included two transplants. For more than a decade, she has also been a caregiver for her daughter through complex health challenges, including a brain tumor, and she now provides long-distance care for her parents.

This extensive experience led Jenn to a powerful realization. While others called her "resilient," she often felt overwhelmed, to the point of being unable to walk through her own front door. Recognizing the gap between her inner feelings and the world's perception, she became a Personal Resilience Practitioner and Prosilience Coach. She discovered that true resilience isn't about being tougher; it begins with learning how to find small moments of presence, even in the middle of chaos.

To share these insights with other caregivers, Jenn founded Carewell Circle, a community for those who understand the complex emotions of loving someone deeply while feeling trapped. She has also created a guide titled "Caregiving Relief You Don't Have to Wait For." Through her work, she teaches others the same powerful techniques that helped her find peace amidst her own challenges.

Quiz: “What’s Draining You Most Right Now?”

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Carewell Circle: 

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Jason Binder, the founder of Aware Coaching, is a dedicated husband and father of five. His caregiving journey began unexpectedly when his wife, Tracy, a lively marathon runner and mother, received a diagnosis of glioblastoma, a terminal brain cancer. This news came just weeks after they had moved into their dream farmhouse. Drawing on his background in pharma and his experience as a change agent, Jason quickly mobilized a support network, leveraging both his professional connections and the strength of his local community to ensure Tracy received the best possible care. His story is one of resilience, as he navigated the emotional and logistical challenges of caregiving while maintaining a sense of hope and purpose for his family.

Throughout our conversation, Jason shares candidly about the toll that long-term caregiving has taken on his mental and physical health, as well as the impact on his children and marriage. He discusses the importance of building a strong support system—what he calls the “three and twelve”—and the need for emotional resilience, especially for men in caregiving roles. Jason’s commitment to advocacy extends beyond his own family; through Aware Coaching, he offers free support and resources to other families affected by brain cancer, aiming to change the narrative around male caregivers and reduce the alarming rate at which female patients are abandoned during serious illness. His story is both inspiring and deeply human, offering valuable insights and hope to anyone facing similar challenges.

About Jason:

Jason Binder is a caregiver, advocate, and founder of Aware Coaching, a free support service for families impacted by brain cancer. His journey began when his wife, Tracy, was diagnosed with glioblastoma in 2022, thrusting him into the uncharted territory of high-stakes caregiving while raising five children. Drawing from his background as a pharmaceutical executive in oncology, Jason blends professional expertise with lived experience to help others navigate the emotional, relational, and practical realities of cancer.

Through Aware Coaching, Jason offers coaching and AI-driven tools like the GBM AI Agent to provide patients and caregivers with real-time answers, hope, and connection. He is also the creator of BrainStorm Health, a substack platform using anonymized caregiver and patient conversations to identify unmet needs and influence care innovation.

Jason’s work is rooted in a belief that no one should face a brain cancer diagnosis alone — and that emotional resilience and relational health are as essential to quality of life as medical treatment. He speaks candidly about the toll caregiving takes, the importance of community, and the need for better integration of patient and caregiver voices in research, clinical trials, and healthcare policy.

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From a young age, Jenifer Massie was immersed in a culture of service, beginning with volunteering in her school’s “gramps and grannies” program and extending to caring for her own family members. Her caregiving roles evolved over the years, from supporting her grandmother and great aunt to becoming a “sandwich caregiver” while raising her own children. Jenifer’s approach to caregiving was shaped by her family’s tradition of stepping in where needed, often without formal discussions, and by her deep sense of gratitude and responsibility.

A pivotal chapter in Jenifer’s journey came when her oldest brother was diagnosed with stage four lung cancer, and she became part of his care team. This period was marked by emotional vulnerability, profound family connection, and ultimately, her own diagnosis with colorectal cancer just weeks before her brother’s passing. Experiencing both sides of care—giving and receiving—transformed Jenifer’s perspective, teaching her the importance of self-advocacy, setting boundaries, and embracing vulnerability. Her faith played a central role in her healing and resilience, guiding her through the most challenging moments. Today, Jenifer channels her experiences into her professional work, supporting other caregivers and advocating for resources, self-care, and open family communication. Her story is a reminder of the strength found in community, the necessity of self-care, and the enduring impact of compassion.

About Jenifer:

Jenifer Alty Massie, Regional Director BrightStar Care, is a dedicated advocate for compassionate care and community support. A Lynchburg native, she deeply values the strong sense of connection between caregivers, clients, and staff.

Before dedicating herself to raising three children, Jenifer worked as a counselor for runaway and at-risk youth, providing guidance and support during critical times. Over the years, she has also cared for aging and terminally ill family members, gaining firsthand experience in the importance of quality home care.

In 2021, Jenifer was diagnosed with colorectal cancer, an experience that gave her a profound understanding of the impact exceptional home care can have during times of pain and uncertainty. She believes that the relationships between clients, caregivers, and nurses can provide comfort and stability when it is needed most.

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Over the course of several years, Angela Ibarra faced a series of profound losses, including her husband, her mother, her job, and eventually her father. Her caregiving journey began early, shaped by a childhood spent supporting a sister with muscular dystrophy and later intensified as she became the primary caregiver for her mother, who suffered from Alzheimer’s. Angela candidly shares the emotional toll of watching her mother’s personality change, the exhaustion of managing her care, and the heartbreak of feeling both anger and love during her mother’s decline. She describes the unique pain of grieving someone long before their physical passing and the complicated relief that can accompany the end of a loved one’s suffering.

Angela’s story is also one of adaptation and self-discovery. After losing her husband and mother within weeks of each other, and later her father, Angela was forced to confront not only her grief but also the impact these experiences had on her career and sense of self. She speaks openly about the challenges of returning to work, the lack of understanding from colleagues, and the eventual loss of her job, which became a catalyst for seeking therapy and reevaluating her life’s direction. Through writing, connecting with others, and embracing her vulnerability, Angela has found new purpose in sharing her story and supporting others who are navigating similar journeys. Her reflections underscore the importance of self-compassion, the messiness of caregiving, and the ongoing process of healing after loss.

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Angela Ibarra is a former VP of HR who spent over 30 years at HP in a variety of leadership roles. Now, she helps entrepreneurs launch their own staffing agencies. She is still figuring out who she wants to be when she grows up. What she can say is that she is a survivor, a storyteller, and a lifelong work in progress.

She has raised an incredible and very spirited daughter who has taught her the importance of having several bottles of red wine on hand at all times.

She now proudly answers to "Gigi" to a growing crew of grandkids, which is a whole different level of joy.

When she's not coaching future business owners, she's probably writing, cooking, sipping wine, or watching animal videos, which is one of her passions. She is known as the animal whisperer.

Whether through poetry, songwriting, or her in-progress book, she believes in the power of sharing stories—the real ones, with heart, grit, and humor. And yes, she’s got a few to share.

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Michelle Cain’s journey as a caregiver began when her mother was diagnosed with Lewy Body dementia during the pandemic, a time already fraught with uncertainty and stress. At 47, Michelle found herself in the “sandwich generation,” balancing the needs of her own family—her husband and two sons—with the increasing demands of caring for her mother. The diagnosis came as a shock, and Michelle quickly had to navigate the complexities of her mother’s delusions, the challenges of finding appropriate care, and the emotional toll of watching a parent’s health decline. Despite a complicated relationship with her mother, Michelle became the primary caregiver, a role shaped by both proximity and necessity.

Throughout this experience, Michelle confronted not only the practical aspects of caregiving but also deep-seated emotional issues. Her mother’s illness unearthed decades of unresolved resentment and anger, forcing Michelle to process and ultimately find forgiveness. This journey was made even more challenging by the pressures of the pandemic and personal struggles within her own family, including her son’s eating disorder and her ongoing commitment to sobriety. Michelle’s story is one of resilience and growth—she openly shares how her caregiving role, though difficult, became a catalyst for healing and self-discovery.

Michelle’s insights, captured in her book “Did Mom Drop Acid?”, offer valuable lessons for others in similar situations. She emphasizes the importance of accepting help, maintaining a sense of humor, and recognizing that grief and forgiveness are complex, ongoing processes. Her candid reflections provide hope and guidance for caregivers facing their own challenges, illustrating that even in the midst of chaos, there can be unexpected gifts and opportunities for personal transformation.

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Learn more about Confessions of a Reluctant Caregiver: https://confessionsofareluctantcaregiver.com/

** Caregiver Action Network Caregiver Help Desk offers free support to family caregivers via phone, chat, or email Monday through Friday, 8:00 am - 7:00 pm Eastern. Get answers, resources, support group info, or a listening ear. Visit www.caregiveraction.org/helpdesk/ or call 855-277-3640.**

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The story of Mollie and Maureen powerfully illustrates the emotional depth and complexities of family caregiving when ALS profoundly impacts a household. Maureen, a pediatric nurse from Philadelphia, took on the primary caregiving role for her mother after her father's death. This decision was driven by both her medical background and a deep sense of love and responsibility. She skillfully managed the demands of her career, family, and caregiving, coordinating her siblings and extended family to honor her mother's desire to remain at home. The path to an ALS diagnosis was uncertain, involving multiple specialists and a gradual understanding of the disease's progression. Despite her professional experience, Maureen found herself learning extensively about ALS, underscoring how even healthcare professionals face significant learning curves when caring for loved ones.

Maureen's daughter, Mollie, offered a distinct perspective as a support to her mother and as a member of the next generation grappling with the implications of a genetic disease. After her grandmother's diagnosis and passing, Mollie's career shifted toward pharmaceuticals and rare disease case management, fueled by her connection to ALS. She also confronted the difficult decision of genetic testing, discovering she carried a mutation linked to ALS. This knowledge influenced significant life choices, including family planning and open discussions with her now-husband about their future. 

Their narrative highlights the importance of workplace flexibility for caregivers, the value of transparent family communication, and the necessity of support systems, both within and outside the family. Through their involvement, they are contributing to a more informed and compassionate approach to ALS and caregiving, offering hope and guidance to others navigating similar journeys.

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Learn more about Confessions of a Reluctant Caregiver: https://confessionsofareluctantcaregiver.com/

** Caregiver Action Network Caregiver Help Desk offers free support to family caregivers via phone, chat, or email Monday through Friday, 8:00 am - 7:00 pm Eastern. Get answers, resources, support group info, or a listening ear. Visit www.caregiveraction.org/helpdesk/ or call 855-277-3640.**

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Shannon Traphagen became a caregiver at 43 when her husband Mike was diagnosed with incurable brain cancer. Their 14-month battle was fraught with heartbreak, including losing an adoption opportunity just before his diagnosis. Despite the challenges, Shannon showed remarkable strength, focusing on Mike's care while managing her own health and emotions.

Her experience highlights the emotional challenges of caregiving for young couples facing medical crises. Shannon and Mike's relationship stayed strong through his illness, with Shannon noting their silent communication in his final hours. After Mike's death, she turned her grief into purpose by creating the "Game On Glio" podcast to support others and focusing on her healing through counseling, self-care, and openness to love again.

Today, Shannon honors Mike's memory while building a new life. She’s writing a book about their journey to share hope and resilience. Her goals are to find love, stay healthy, and create a lively, connected home. Her story shows how caregivers can survive loss and stay hopeful.

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Learn more about Confessions of a Reluctant Caregiver: https://confessionsofareluctantcaregiver.com/

** Caregiver Action Network Caregiver Help Desk offers free support to family caregivers via phone, chat, or email Monday through Friday, 8:00 am - 7:00 pm Eastern. Get answers, resources, support group info, or a listening ear. Visit www.caregiveraction.org/helpdesk/ or call 855-277-3640.**

Shannon Traphagen became a caregiver at 43 when her husband, Mike, was diagnosed with incurable brain cancer. Their 14-month journey was filled with challenges, including the heartbreak of losing an adoption opportunity shortly before his diagnosis. Despite this, Shannon focused on Mike's care and maintained her own well-being.

After Mike's passing, Shannon channeled her grief into purpose by creating the "Game On Glio" podcast, which supports brain cancer patients and their families while spreading awareness. The podcast, which ranks in the top 10% globally and won a 2023 Ignite Award, shares stories of resilience and hope.

Shannon is also the founder of Traphagen’s Trail Ride 4 Brain Cancer, raising over $75,000 for clinical trials. As an accomplished writer and motivational speaker, she continues to honor Mike’s memory while writing a book about their journey and focusing on her healing, health, and

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