Whole Caregiver

Parenting Children with a Rare Disease: Our Conversation with Jillian Arnold

Hosts Erna and Megan welcome Jillian Arnold, who shares her family’s journey after both of her children were diagnosed with ASMD, a rare and progressive genetic condition. Jillian Arnold is the proud mom of two children, Roman and Stella, who both live with ASMD, a rare and terminal genetic condition. She’s the host of Confessions of a Rare Disease Mama, a podcast where she shares honest conversations about caregiving, medical parenthood, and finding purpose through life’s hardest moments. Jillian is also the author of the children’s book Soaring Together, which celebrates inclusion and differences, inspired by her own family’s journey. In addition to her creative work, she’s a passionate rare disease advocate and speaker."
 
In this episode, Jillian discusses the early diagnosis, building a trusted care team, and navigating treatments while raising awareness through her podcast and children’s book. She also opens up about the everyday realities of caregiving — the importance of advocacy, finding community both online and in person, and carving out small acts of self-care to sustain resilience. Jillian reflects on how her experiences have positioned her as a resource for others facing similar challenges.
If you would like to find out more about Jillian and her work check out her website: https://www.confessionsofararediseasemama.com/
 

Building Caregiver-Friendly Workplaces

Hosts Erna and Megan interview Tracy Dunbar, founder of HR Redefined, about navigating caregiving in the workplace.
 
Tracy is a dedicated leader who strongly believes in the power of Human Resources and Talent Management to drive social justice and equity in our workplaces. With a deep commitment to creating fair and inclusive environments, Tracy strives to demonstrate what true equity and inclusion can look like every single day and leads with a set of core values that guide her approach. Sharing power and decision-making is a fundamental principle she upholds, empowering individuals to actively participate in shaping their work environment. Leading with empathy, Tracy strives to understand and support the unique needs and experiences of individuals and build solutions that meet their needs. Moreover, she is a proponent of challenging the status quo, constantly seeking innovative approaches to drive positive change.
They explore the challenges faced by caregivers, the importance of creating supportive workplace policies, and the role of leadership in fostering a caregiver-friendly environment. Tracy shares her insights on the need for transparent communication, defining caregiving roles, and the balance between organizational needs and employee support. The discussion emphasizes the importance of empathy, structure, and advocacy in improving the workplace for caregivers.
Tracy offers practical steps—flexible work arrangements, parental/paid leave, donated time banks, childcare options, knowledge management, cross-training, and budgeting for coverage—and emphasizes leadership courage and storytelling to normalize caregiving.
The episode gives actionable advice for caregivers to speak up and for employers to build equitable, sustainable systems that support staff while maintaining performance.
Links to find out more about Tracy's work:
 
Company website: https://hr-redefined.com/
 
BIO: https://hr-redefined.com/about/
 
LinkedIn Profile: www.linkedin.com/in/tracydunbar
 
Sample Work: Our Approach to Bereavement Policy
 
 
 

Finding Grace Through ALS

Erna and Megan talk with Lisa Valentine Clark about caring for her late husband, Dr. Christopher Clark, who was diagnosed with ALS. Lisa emphasizes the need to share experiences and the legacy of love that caregiving can create, even in the face of adversity. The conversation serves as a reminder of the strength found in vulnerability and the connections formed through shared experiences.
She offers three core takeaways for caregivers: give yourself grace, accept help from your community, and speak openly about caregiving to support others facing similar journeys.
If you want to learn more about Lisa Valentine Clark, you can find her podcast "The Lisa Show" wherever you get your podcasts. 

From Grief to Growth

In this episode hosts Erna and Megan reflect on Erna’s origin story as a caregiver, exploring grief, the temptation to idealize loved ones, and the move toward honest remembrance.  They explore the balance between honoring loved ones and acknowledging their complexities. They discuss connecting with other caregivers, building a supportive platform, and advocating for compassion within workplaces.
Erna shares her journey toward setting boundaries, prioritizing health, and pursuing a more fulfilling, multi‑threaded career. The episode ends with practical encouragement for listeners to care for themselves and others.
Check out Season 1 Episode 4 for Erna's origin story. 

Letting Go, Holding On

Hosts Erna and Megan reflect on two years of The Whole Caregiver Podcast, revisiting their origin stories and how caregiving roles have changed over time. They discuss transitions—preparing children for independence, supporting aging parents, and the messy, non‑linear reality of caregiving.
The episode highlights learning to accept uncertainty, approach conflict constructively, advocate for loved ones, and embrace growth through caregiving’s ebbs and flows.
See Season 1 Episode 3 for Megan's origin story. 

Self-Worth and Self-Care

In this episode, Erna and Megan share valuable insights from their caregiving journeys, discussing themes of self-worth, the importance of preparation, and the dynamics of healthy relationships. They emphasize the significance of deep self-care as a holistic approach to living.
They discuss mindfulness, the peaks and valleys of caregiving, and the importance of community and mutual support as keys to staying whole while caring for others. 

Caregiving in Uncertain Times

Hosts Erna and Meg open season three discussing how caregivers can live with uncertainty: accepting what is out of our control, setting boundaries, and trusting ourselves and others. They share practical strategies—turning off notifications, pacing information, extending grace, and learning from mistakes—to reduce anxiety and stay present.
The episode emphasizes community and forgiveness within the healthcare system, the power of doing the next right thing, and holding on to hope as a sustaining force for caregivers.

Memorable Moments from Season Two

In this final episode of Season 2, Erna and Megan revisit the podcast's original intent to create a supportive community for family caregivers, while sharing personal highlights, factual information, and lessons learned.
The hosts recount favorite episodes, including interviews and discussions addressing the often-overlooked challenges in caregiving, such as financial struggles and medical gaslighting. With an emphasis on authentic storytelling, they reflect on how these narratives have broadened their understanding of the caregiving continuum.
Looking ahead to Season 3, Erna and Megan explore plans for new formats and soliciting audience input on topics of interest. They extend gratitude to their "Whole Caregiver family" and encourage listeners to help expand their reach, ensuring more caregivers can access the resources and connections they offer.

Let Them Part II Episode

Join hosts Erna and her guests Rachel and Xue as they explore the application of Mel Robbins' book, 'The Let Them Theory', in the context of caregiving. In this episode, they discuss the constant state of stress caregivers experience and how understanding and managing stress can impact caregiving. The conversation delves into the personal journeys of the hosts, sharing revelations and challenges faced in balancing caregiving duties with personal life. They reflect on the nuances of control, guilt, and the importance of prioritizing self-care amidst caregiving responsibilities. Listen as the group shares personal insights on overcoming self-doubt, letting go of societal 'shoulds', and navigating family dynamics. They also reflect on the obstacles that hinder the application of the theory and the exceptions to its use, emphasizing the need for self-compassion and openness to personal growth.

Let Them Part I Episode

In this engaging episode, hosts Megan and Erna, along with their guests Xue Peng and Rachel Cohen, delve into the transformative ideas presented in Mel Robbins' book, The Let Them Theory. The discussion explores personal insights, mindset shifts, and the balance between caregiving and self-care, emphasizing the importance of letting go.
They navigate the controversy surrounding the book, crediting its foundational ideas while acknowledging its impact on personal empowerment. Join the conversation to discover how these principles can lead to personal growth and resilience in everyday relationships and caregiving scenarios.