In this episode, Ed DeVaney joins the sisters of "Confessions of a Reluctant Caregiver" to share his deeply personal caregiving experience. Raised in a competitive and close-knit Irish Catholic family in Chicago, Ed describes a childhood filled with familial connections and strong influences from his mother, who not only modeled the values of care and perseverance but also became the central figure in his own journey as a caregiver. When Ed moved to North Carolina for a major career opportunity, it coincided with the onset of his mother's dementia and Alzheimer’s diagnosis—changes that altered the dynamic of his family and thrust him, alongside his two older sisters, into the complexities of caring for an ailing parent.

Ed speaks candidly about the emotional and logistical challenges that came with balancing his professional growth, the demands of an MBA program, and raising his young family while regularly traveling back to Chicago to help care for his mom. He highlights the family tensions, the guilt of missing pivotal moments in his children’s lives, and the difficulties of honoring his mother’s wish never to enter a nursing home—a promise the siblings ultimately struggled with before acknowledging her increasing needs. Looking back, Ed shares honest reflections on vulnerability, the importance of asking for help, and the lessons this experience has taught him as both a leader and a father. Above all, his story underscores the universal challenges faced by caregivers, the enduring bonds of family, and the need for grace—toward others and oneself—throughout the journey.

About Ed:

Ed DeVaney is a Chicago native from a large, close-knit family. Growing up, he was a dedicated athlete, and that competitive spirit continues to drive him today. Ed has been married to his wife, Michelle, for 20 years, and together they have three children: Grace, Chloe, and Ryan. Their family also includes three dogs: Lakota, Lola, and Poncho.

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This week’s episode focuses on Christopher “Chris” Schuler—his journey as a son, father, and most notably, a devoted caregiver. Chris, adopted from Colombia and raised in a loving, close-knit family in New York, reflects deeply on identity, belonging, and the power of chosen family. His parents’ move to Rhode Island marked a period of even stronger family bonds, which would later prove invaluable when his father was diagnosed with glioblastoma, an aggressive form of brain cancer. The diagnosis and subsequent caregiving experience were transformative for Chris: he describes the initial shock, the emotional toll of shifting immediately into crisis mode, and the unwavering determination to care for his father, drawing strength from childhood lessons of love, attachment, and resilience.

Throughout his father's illness, Chris balanced being a parent himself, maintaining his job, and providing near-round-the-clock care. He candidly shares the physical and mental challenges of caregiving, including the toll on his own health and the burnout that caregivers often experience. Yet, amidst the difficulty, he found meaning by staying present, bringing humor to dark moments, and cherishing precious time with loved ones. The experience has forever changed Chris—today, he proudly claims his identity as “Dad,” guided by his father’s legacy of love and laughter, and is committed to using his voice to support and advocate for other caregivers navigating similar journeys.

About Chris:

Chris is a staunch brain cancer awareness advocate. He was the primary caregiver to his late Dad, Donald Schuler, who was diagnosed with GBM in July 2021. He works closely with biotech’s and patient advocacy organizations across the globe, amplifying their critical work and building key relationships to further improve outcomes for patients. He spent eighteen years as a successful philanthropic facilitator, having raised millions for a variety of causes. He's currently a Venture Partner with Varia Ventures, working to raise awareness for emerging venture funds dedicated to uncovering and funding innovative discoveries to improve brain health. Chris continues as his Dad's caregiver — caregiver to his life, legacy and memory.

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Tricia Fitzgerald brings a deeply personal and candid perspective to the experiences of long-term caregiving within a family affected by chronic illness. Drawing from over two decades of advocacy and professional work supporting children and families, Tricia’s story is rooted in her own journey—beginning with undiagnosed chronic illness symptoms as a child and culminating in the late discovery of Ankylosing Spondylitis and rheumatoid arthritis in adulthood. These diagnoses not only shaped her own life but also set the stage for her caregiving journey when several of her six children began exhibiting similar autoimmune conditions, adding layers of both challenge and resilience to her role as a mother and advocate.

Through her story, Tricia highlights the complexities of navigating the medical system, including the frequent dismissal of symptoms, gender disparities in medical treatment, and the persistent need to advocate fiercely for proper diagnoses and care. She candidly shares the toll caregiving takes on personal well-being, marriage, and professional life, while emphasizing how communication, mutual support, and humor—such as the family’s use of “mashed potatoes” or “mockingbird” as de-escalation cues—have fortified her marriage and family bonds. Tricia also reflects on the importance of self-care, finding joy in small moments, and encouraging her children to develop their own voices as advocates as they transition into adulthood.

Her journey is one of perseverance, love, and a relentless pursuit of both care and authenticity, making her story both inspiring and deeply relatable for caregivers everywhere.

About Tricia:

Tricia Fitzgerald, M.Ed., is a seasoned leader in social and family services with over 20 years of experience in education, advocacy, and program management. As the Program Director for Maryville Crisis Nursery, she oversees critical services for families in crisis. Her expertise is further honed by her role as Adjunct Faculty in the College of Education at DePaul University, where she has trained and supervised aspiring teachers since 2005.

Tricia is also the founder of Gentle Beginning, Inc., through which she provided childbirth education, doula services, and family advocacy for a decade. Her professional passion for supporting families is deeply personal; as a mother of six children, all with chronic health conditions, she brings unparalleled empathy and firsthand knowledge to her work. Tricia is a dedicated advocate, committed to ensuring every child and family has the resources and support they need to thrive.

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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?”

subscribepage.io/caregiverquiz

Carewell Circle:

swarm.store/jenn-fredericks-prosilience-coach

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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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Confessions of a Reluctant Caregiver

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