Whole Caregiver

Caregiving Is Everyone's Work: Audio Version

This episode explores the social and personal dimensions of caregiving, highlighting its undervaluation, gendered expectations, and the need for supportive policies. Hosts Erna and Megan share personal stories, societal observations, and call for greater recognition and support for caregivers across all experiences. 
Caregiving Documentary Information: https://www.pbs.org/show/caregiving/
Megan discussed full day kindergarten--her state has a policy for optional full day, and here is a report detailing the impacts of full day kindergarten: https://edworkingpapers.com/sites/default/files/ai24-987.pdf

Caregiving is Everyone's Work: Video Version

This episode explores the social and personal dimensions of caregiving, highlighting its undervaluation, gendered expectations, and the need for supportive policies. Hosts Erna and Megan share personal stories, societal observations, and call for greater recognition and support for caregivers across all experiences. 
Caregiving Documentary Information: https://www.pbs.org/show/caregiving/
Megan discussed full day kindergarten--her state has a policy for optional full day, and here is a report detailing the impacts of full day kindergarten: https://edworkingpapers.com/sites/default/files/ai24-987.pdf
 

Doing Hard Things: Hannah Setzer on Disability, Joy, and Community

Hosts Erna and Megan interview Hannah Setzer—author, advocate, adaptive fitness coach, and parent—about living authentically with disability, caregiving, and creating community. Hannah shares stories of resilience, parenting children, and how she turned a dream for an inclusive playground into new local initiatives.
The episode highlights practical advice on building supportive communities (both online and in-person), pursuing and achieving goals, and finding joy in everyday life while navigating challenges.
To learn about Hannah and her work, check out the following links:
Uniquely Abled — organization that supports adaptive sports and fitness
https://www.uniquelyabledfitness.org/
Washington Post — featuring Hannah’s community project
https://www.washingtonpost.com/local/setzer-accessible-playground-disabled-foster/2021/06/16/8af7a452-cebb-11eb-a7f1-52b8870bef7c_story.html
Hannah Setzer’s Instagram — for ongoing advocacy and updates
@hannahvsetzer
Hannah's Farm
https://handcraftedbyhannah.com/
One of Hannah's Books:
https://tantor.com/author/hannah-setzer.html
 
 

When Care Calls: A Daughter's Journey from NYC to Home

In this episode, hosts Erna and Megan sit down with Jacquelyn Revere to hear her family caregiving story: moving home to care for her mother and grandmother with dementia, the shock of sudden responsibilities, and the emotional complexity of caregiving as a young adult.
They discuss sharing her experience publicly, building The Care Den community, the importance of honesty, softness, and mental health support, and the ongoing need for reliable respite and connection for family caregivers.
To find out more about Jacquelyn:
Instagram: @momofmymom
La Times Op-Ed -https://shorturl.at/orwzGNPR Feature - https://shorturl.at/kAFRSTv Writing Articles - https://shorturl.at/jpuJMhttps://shorturl.at/gipuz

Caregiver Levels: Alma Valencia's Story

Alma Valencia shares her 10-year journey caring for her mother with frontotemporal dementia, explaining how caregiving roles evolve from a helper to a full-time protector.
She discusses balancing family responsibilities, stepping away from her career, building community through her Instagram accounts, and finding small moments of joy amid challenges.
Alma emphasizes the need for understanding and collaboration between caregivers and healthcare professionals, advocating for a more inclusive approach to dementia care.
To learn more about Alma and her work, please find her on Instagram at: @mom_has_dementia and @thecaregivercomadre
Many thanks to Alma for sharing her time with us!

2026: The Year Caregivers Take Action

In this conversation, Erna and Megan discuss the challenges faced by caregivers in 2026, emphasizing the need for community support, the importance of respite, and the impact of Medicaid cuts. They explore the necessity of self-care for caregivers and the importance of taking action to support one another. The discussion highlights the need for collective values in caregiving and the importance of finding common ground across political divides. The conversation concludes with a call to action for caregivers to take care of themselves and each other as they navigate the complexities of caregiving.

"Soaring Together": More with Jillian Arnold

In this episode of the Whole Caregiver podcast, hosts Erna and Megan engage in a heartfelt conversation with Jillian Arnold, author of 'Soaring Together.' They explore Jillian's journey as a caregiver, the emotional complexities of caring for children with disabilities, and the importance of inclusion and understanding differences. The discussion delves into the balance between caregiving and personal identity, the toll of caregiving on mental health, and the profound impact of loss. Jillian shares her insights on finding beauty in non-traditional lives and the lessons learned from her children, emphasizing that life can be beautiful even when it doesn't fit the typical mold. Jillian also shares how her creative projects—podcast, merch, and a book—help sustain purpose and connection.
If we want to learn more about Jillian's book and where to find it, check out her website:
https://www.confessionsofararediseasemama.com/donate
 
 
 

Gratitude & Holiday Wishes

In this heartfelt holiday message, Megan and Erna express their gratitude to their listeners and reflect on the themes of love, service, and community. They share personal insights about the importance of connection during the holiday season, especially for those who may be grieving. The conversation emphasizes the value of friendship and support, and they look forward to engaging with their audience in the new year.

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