Whole Caregiver

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

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  

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    

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/orwzG NPR Feature - https://shorturl.at/kAFRS Tv Writing Articles -  https://shorturl.at/jpuJM https://shorturl.at/gipuz

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!

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.

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      

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.

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/  

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      

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. 

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. 

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. 

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. 

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.

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.

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.

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.

Welcome to this episode of The Whole Caregiver, where hosts Erna and Meg delve into the complex and often challenging world of medical gaslighting. In this candid discussion, Erna shares her personal experiences with medical gaslighting, shedding light on how assumptions and bias can impact patient care. Megan adds her own encounters from the perspective of a family caregiver, offering insights into the systemic issues that caregivers face when advocating for loved ones. With stories ranging from dismissive physicians to impactful encounters that changed their healthcare journey, this episode serves as a powerful reminder of the importance of advocating for one's own health and the health of those under their care. Join Erna and Meg as they explore the significant role of self-advocacy in healthcare, providing listeners with strategies to ensure their voices are heard, respected, and valued. Takeaways Medical gaslighting can manifest in various forms, often related to biases. Advocacy is crucial for patients and caregivers in healthcare settings. It's important to seek second opinions when feeling dismissed by healthcare providers. Personal experiences can shape our understanding of the healthcare system. Empathy from healthcare providers can significantly impact patient experiences. Navigating caregiver challenges requires support and understanding from medical professionals. Building relationships with healthcare providers can lead to better care. Awareness of one's rights as a patient is essential. The healthcare system can be overwhelming, but advocacy can help navigate it.

In this fascinating episode, hosts Erna Alfred-Liousas and Megan Thomas Hebdon delve deep into the world of medical gaslighting. They explore its definitions, origins, and the continuum of medical gaslighting, including medical invalidation, and discuss how it manifests in modern healthcare settings. The conversation highlights the challenges both patients and healthcare providers face, emphasizing the importance of awareness and effective communication in overcoming these barriers. The episode concludes with actionable takeaways for patients to enhance their advocacy and awareness during medical interactions. Stay tuned for their follow-up episode where they share personal experiences and practical tips for navigating potential gaslighting scenarios. Takeaways Gaslighting is a manipulation that invalidates a patient's concerns. Medical gaslighting can stem from provider inexperience or implicit bias. Patient-centered care focuses on collaboration between patients and providers. Awareness of one's symptoms is crucial for effective communication with healthcare providers. Keeping a journal of symptoms can aid in medical consultations. Patients should advocate for themselves and their loved ones in healthcare settings. The healthcare system often pressures providers, impacting patient care. Not all disagreements with a provider constitute gaslighting. Understanding the continuum of medical gaslighting can help patients identify their experiences. Effective healthcare interactions require preparation and open dialogue.

In this enlightening episode, hosts Erna Alfred-Liousas and Megan Thomas-Hebdon welcome a special guest, Erin Cebreros, Megan's older sister, to discuss the journey of living with epilepsy. Erin shares her personal experiences dealing with epilepsy, a condition she developed as a young adult amidst family trauma. Through her story, Erin explores themes of resilience, emotional processing, and the importance of acceptance in managing chronic illness. Erin's narrative highlights her battles with epilepsy and the impact it had on her life aspirations, independence, and family dynamics. From lost opportunities to unexpected challenges, Erin provides insight into the emotional and physical demands of chronic illness, while emphasizing the power of communication and self-awareness in overcoming obstacles. Listeners will gain valuable advice on supporting loved ones with epilepsy, understanding the condition, and the importance of discussing health openly. Erin's wisdom and experiences serve as a beacon of hope and strength, showcasing how individuals can navigate life's hurdles while maintaining a focus on personal wellness and acceptance. Purple Day is March 26, 2025. Please join us in wearing purple and raising awareness for epilepsy.  If you want to understand more about epilepsy, check out this link. 

In this episode, Erna Alfred-Liousas and Megan Thomas Hebdon welcome a special guest, Caitie Thomas, a dedicated second-grade teacher. Caitie shares her journey and offers a glimpse into the challenges teachers face in low-income schools, from crowded classrooms to policy hurdles. She emphasizes the importance of viewing education as a team effort between teachers and parents/caregivers. The conversation emphasizes the need for understanding and support from parents/caregivers, highlighting the dedication teachers have towards their students' well-being and education. The episode also explores the essential role of advocacy and communication in fostering an environment where every child can thrive. Caitie mentions this John Green quote: "Public education does not exist for the benefit of students or the benefit of their parents. It exists for the benefit of the social order. We have discovered as a species that it is useful to have an educated population. You do not need to be a student or have a child who is a student to benefit from public education. Every second of every day of your life, you benefit from public education." Megan mentions this book: The Teachers: A Year Inside America's Most Vulnerable, Important Profession by Alexandra Robbins  

In this episode, Erna and Megan delve into the essence of self-compassion, particularly for family caregivers. Drawing on Megan's nurse coaching training and the influential work of Dr. Kristin Neff, they explore practical love and kindness toward oneself, especially crucial for those who dedicate their lives to caring for others. The discussion unveils the RAIN framework—Recognize, Allow, Investigate, Nurture—as a guide to channel compassion inward, alongside engaging with emotions rather than dismissing them. Megan and Erna share personal stories and insights into overcoming cultural and personal barriers to self-kindness.  Listeners are encouraged to advocate fiercely for themselves, just as they would for their loved ones, and to recognize their inherent worth, independent of external validation. With relatable anecdotes and a sprinkle of humor, this episode invites caregivers to honor their own inner wisdom and embrace the transformative power of self-compassion. Here are some resources about self-compassion and Dr. Kristin Neff's work: https://www.psychologytoday.com/us/blog/finding-true-refuge/202001/radical-self-compassion   https://www.youtube.com/watch?v=11U0h0DPu7k   https://www.youtube.com/watch?v=rUMF5R7DoOA   https://www.youtube.com/watch?v=IvtZBUSplr4   https://www.youtube.com/watch?v=JVgb9yXeVCY   https://www.youtube.com/watch?v=JCUGj3H_86g   Here is information about Dr. Becky Kennedy's work--Good Inside: https://www.goodinside.com/about/

Welcome to a special episode dedicated to National Caregivers Day, hosted by Megan and Erna. This episode sheds light on the importance of both formal and informal caregivers and their invaluable contributions to families, communities, and society. Discover the origins of this special day, established to recognize the dedication of caregivers across the U.S., and learn about the positive impact they have, not only on the healthcare system but also in providing continuous, loving care to those in need. Join us as we discuss the ways to participate in National Caregivers Day, whether by supporting caregivers through gestures of gratitude or simply holding space for their experiences. In this episode, we highlight the significance of acknowledging the immense hard work done by caregivers and the need for community support and appreciation. Learn more: https://caregiverdoc.com/national-caregivers-day/

Join hosts Erna and Megan in a conversation with special guest Matt Hebdon. As an associate professor and professional engineer, Matt ventures beyond his academic role to share his deeply personal journey as a caregiver. In this episode, we explore the dual focus on partner caregivers and Rare Disease Month, shedding light on the unique challenges faced by families. Matt, Megan's husband, reflects on the complexities of managing a career, family, and caregiving responsibilities, particularly with two children diagnosed with rare diseases. Through candid discussions, Matt reveals the emotional and practical growth experienced while navigating the healthcare system, insurance challenges, and the weight of caregiving responsibilities. The episode delves into the nuanced dynamics of a partnership tested by health crises and emphasizes the strength found in shared resilience and support. Matt emphasizes the need for teamwork in caregiving roles and the significance of asking for help when needed. The conversation concludes with Matt's valuable advice for caregivers including balancing individual coping mechanisms with collective family support and underscoring the importance of empathy, adaptability, and community involvement in caregiving journeys.  

In this enlightening episode of The Whole Caregiver, hosts Erna and Megan dive deep into the essential topic of financial well-being for family caregivers. Through personal anecdotes and professional insights, Erna shares her experience with financial planning while managing her mother’s care, offering practical advice on balancing caregiving responsibilities with personal financial health.  Listen in as they explore the importance of having open conversations with loved ones about financial matters and the necessity of thinking ahead to safeguard your own financial future. The discussion also highlights the value of enlisting professional help, such as accountants and elder care attorneys, to manage caregiver finances effectively. Erna and Megan emphasize that preparation is key to self-care, urging caregivers to prioritize their own financial needs alongside those of the people they care for. This episode is a must-listen for anyone who finds themselves in the caregiving role, offering invaluable resources and support to maintain financial balance and overall well-being. Here are some resources to support caregivers with their financial responsibilities: https://files.consumerfinance.gov/f/documents/cfpb_considering-a-financial-caregiver-know-your-options_guide_2021-05.pdf   https://www.aarp.org/caregiving/financial-legal/info-2020/managing-someone-elses-money.html   https://www.aarp.org/caregiving/financial-legal/info-2020/caregivers-legal-checklist.html   https://www.caringinfo.org/planning/financial-matters/how-to-provide-financial-caregiving/   https://www.schwab.com/schwabsafe/financial-caregiving-101

In this short episode, Erna and Megan reach out to listeners, particularly those in the Los Angeles area, who are facing dire circumstances due to recent wildfires. They express solidarity and offer support, sharing their thoughts and prayers with those affected.  This page is a good place to start for area resources and how to assist those needing support. Please see additional resources below: California Wildfire Resources 2025  The Department of Forestry and Fire Protection  SoCal Wildfires: How You Can Help 

Welcome to a new episode of The Whole Caregiver, where hosts Erna and Megan kick off the New Year 2025 with a critical discussion on financial well-being. This episode is part one of a two-part series focusing on the financial challenges faced by caregivers. Megan shares her personal journey into caregiving research, driven by her own experiences during the Great Recession, emphasizing the intersection of health, caregiving, and financial stress. The conversation delves into Megan's research findings, highlighting the lack of structural support in the U.S. for unpaid caregiving roles. The discussion also touches on the broader societal issues such as essential workers, gender norms, socioeconomic disparities, and the cultural undervaluing of care work that compound financial difficulties for caregivers. Whether it's through advocating for paid family leave or supporting fellow caregivers, Erna and Megan encourage listeners to explore ways to alleviate the financial burdens in caregiving. Tune in to uncover insights and practical approaches to support caregivers financially and stay tuned for the continuation of this important discussion in the next episode.  Check out this article for an example of Megan's academic work: https://pmc.ncbi.nlm.nih.gov/articles/PMC10365074/ Check out Moms First for advocacy opportunities related to care work and mothers: https://momsfirst.us/our-work/

Join hosts Megan and Erna on "The Whole Caregiver" podcast as they reminisce about holiday caregiving memories. In this episode, they share personal stories and reflections, highlighting the challenges and rewards of caregiving during the festive season. Listen as Erna shares memorable moments from her family traditions, including key experiences with her mother and mother-in-law. Megan recounts bittersweet memories from her daughter's hospital visits during the holidays, offering insight into the resilience and strength found in difficult times. Together, they explore the emotional complexity of caregiving, balancing the joys and the hardships, and emphasize the importance of reflecting on one's caregiving experiences. As they exchange stories and traditions, Megan and Erna also discuss the beauty of human connections, love, and support that illuminate even the most challenging caregiving journeys. If you are interested in reading "Bittersweet: How Sorrow and Longing Make us Whole" by Susan Cain, check out this link: https://susancain.net/book/bittersweet/ Happy holidays and love to all of you!

Join Erna and Megan in a special December episode as they discuss the transformative experiences and insights gained from the Caregiver Nation Summit. Recorded amidst holiday preparations, this episode highlights the significance of advocacy and awareness in family caregiving. Megan shares her journey as a participant at the Summit, organized by the National Alliance for Caregiving, an advocacy group focused on family caregiving research and awareness. She reveals the unique aspects of this conference, which emphasized advocacy in tandem with traditional research, and how it brought together people from varied backgrounds, including policymakers and individual advocates. Listen to inspiring stories and discussions on the universal nature of caregiving, the importance of narrative change, and powerful moments when personal stories were used to advocate for policies like the Older Americans Act. Megan and Erna emphasize the role each of us plays at our community level to support caregivers and influence legislative decisions. This episode reminds us of the strength in collective experiences and the potential to make caregiving a normalized and supported aspect of life. Tune in to feel empowered and informed about how you can contribute to the caregiving community, regardless of your current caregiving status. Senate Bill Information for Older Americans Act Reauthorization: https://www.congress.gov/bill/118th-congress/senate-bill/4776 Administration for Community Living Older Americans Act Information: https://acl.gov/OAArule National Alliance for Caregiving Information: https://www.caregiving.org/research/caregiving-in-the-us/caregiving-in-the-us-2020/ Caregiver Nation Summit Recordings: https://www.youtube.com/playlist?list=PLqooqFMD2JDsSNai8JCNe8rGPymVEVHcR    

Join hosts Erna and Megan in a compelling episode of The Whole Caregiver as they welcome Ellen Patnaude, an award-winning author and coach, to share her candid caregiving journey. Ellen opens up about the assumptions she had before stepping into the caregiving role and the emotional complexities that followed. In a heartfelt conversation, Ellen discusses the misconceptions surrounding caregiving and the internal and external pressures caregivers face. She emphasizes the importance of self-compassion and the need for more honest discussions about the realities of caregiving. Listeners will also hear about Ellen's book, "You're Not Doing It Right," which sheds light on the raw truths of caregiving, offering a voice to those who feel unseen. Discover how Ellen's journey can inspire and validate your own experiences in this powerful episode. For more information on Ellen's book, please check out the links below: To buy a signed copy (paperback or hardcover) from Ellen directly, AND to download a resource list and see photos of her family's journey: https://patnaudecoaching.com/patnaude-coaching-books/not-doing-it-right/ To buy the book from Amazon, in paperback, hardcover, or on Kindle: https://www.amazon.com/Youre-Not-Doing-Right-Unpredictable/dp/B0D2Z5H7BH/?_encoding=UTF8&pd_rd_w=jpU4W&content-id=amzn1.sym.e5c4b41c-5fcc-40aa-ba1a-d4f042d962e8&pf_rd_p=e5c4b41c-5fcc-40aa-ba1a-d4f042d962e8&pf_rd_r=139-7026157-9939007&pd_rd_wg=vT1Ta&pd_rd_r=4e838b52-2998-40e9-ae30-99c7796090a1&ref_=aufs_ap_sc_dsk To listen to a free sample of the audiobook and order it from the platform that gives authors the most credit for their own work: https://awesound.com/a/youre-not-doing-it-right The audiobook is also now available on Audible, Spotify, Barnes & Noble, Nook, and more.

In this special episode, Erna shares a reflection in honor of National Caregiver Month, emphasizing the importance of hitting the reset button in our lives. Through a personal story of hiking an active volcano in Sicily with her husband, Erna explores how this challenging yet rewarding experience allowed her to confront fears and gain new insights. The episode delves into the emotional journey from the somber start of summer, marked by the loss of a beloved niece, to the joyous celebration of a family wedding. Erna highlights the profound impact of stepping away from routine and embracing new adventures, ultimately finding gratitude and joy amidst life's challenges. Listeners are encouraged to find their own way to reset, whether through travel or simple changes in daily life, to gain a fresh perspective and rejuvenate their spirit. Tune in to discover the transformative power of taking time for yourself and embracing life's unexpected adventures.

In this heartfelt episode of "The Whole Caregiver," host Megan Hebden shares her personal reflections on the challenges and triumphs of family caregiving. As Family Caregiving Month is celebrated, Megan opens up about her own struggles in balancing numerous responsibilities, from hosting the podcast to caring for her family, including a father with Alzheimer's disease. Drawing from her own experiences and a well-known biblical story of Mary and Martha, Megan explores the importance of finding a balance between caring for others and taking care of oneself. She candidly discusses the difficulties of asking for help, the societal gaps in support systems, and the need to acknowledge personal needs. Listeners are encouraged to explore hidden sources of support and to let go of the notion of being a martyr in caregiving. Megan also highlights ongoing efforts in caregiving research aimed at making resources more accessible. Tune in for an honest conversation about the reality of caregiving and the significance of self-compassion. If you do need help, consider the following resources: 2-1-1 Area Agencies on Aging Churches in your community (even if you are not religious--some resources are for the community) Family (sometimes boundaries need to be drawn and specific requests need to be made)  

Join hosts Erna and Megan in the final episode of The Whole Caregiver podcast as they welcome back Susan Chaityn Lebovits. Dive into a comprehensive discussion on ensuring the safety of aging loved ones, emphasizing early preparation. Susan shares practical tips on home modifications, from installing grab bars to rearranging household items for accessibility. Discover strategies to introduce safety measures to loved ones and learn the importance of regular health check-ups, including eye and hearing tests. The episode highlights the significance of power of attorney, healthcare directives, and POLST forms in planning for end-of-life care. Gain valuable insights and resources to support caregivers on their journey, ensuring they are not alone in navigating the complexities of aging care. You can find Susan at Ease into Aging: [email protected] Here is the helpful information Susan compiled for our episodes:  Secure your loved one with a home care organization before there’s an emergency. At the least, do the research and have the information ready! Maintaining social connections is critical to healthy aging for: ● Sense of community ● Strengthening brain synapses to maintain memory ● Physical activity (getting to and from event) Some seniors avoid socializing. Keep in mind that what may appear as being stubborn could actually be: ● Social anxiety ● Concern of finding a toilet ● Painful to walk ● Fear of technology ● Lack of transportation ● Hearing loss ● Vision loss Have an annual vision check to ensure safety. Have an annual hearing test to avoid social isolation. Home Safety Checklist Find Caregiving Caregiving Plan to Download and Print Websites and Apps to Aid Families with Caregiving Support Find a Geriatric Care Manager Moving Support- Find a Senior Moving Manager End of Life Planning POLST Forms

Welcome back to another enlightening episode of "The Whole Caregiver" with your hosts, Erna and Megan. In this second installment of our series with Susan, we delve deep into the intricacies of communication as our loved ones age. Susan shares her wealth of experience and insights on the physical and emotional changes that impact communication, offering practical techniques to improve interactions with aging parents. Throughout the episode, Susan highlights the importance of understanding the emotional versus cognitive changes in our loved ones and how these affect their ability to express and process information. From mobility issues to social isolation, learn about the barriers that can hinder effective communication and how to overcome them. Discover strategies to help aging parents maintain their dignity and independence, while also ensuring their safety and well-being. Explore the role of social connections in enhancing emotional and physical health, and hear real-life examples of how caregivers can navigate challenging situations with empathy and understanding. Tune in for valuable takeaways on utilizing geriatric care managers, community resources, and innovative solutions to support caregivers and their loved ones. This episode is a must-listen for anyone navigating the complexities of caregiving and seeking to foster meaningful communication with their aging family members. You can find Susan Chaityn Lebovits at Ease into Aging: [email protected] Here is the information Susan compiled for our episodes: Secure your loved one with a home care organization before there’s an emergency. At the least, do the research and have the information ready! Maintaining social connections is critical to healthy aging for: ● Sense of community ● Strengthening brain synapses to maintain memory ● Physical activity (getting to and from event) Some seniors avoid socializing. Keep in mind that what may appear as being stubborn could actually be: ● Social anxiety ● Concern of finding a toilet ● Painful to walk ● Fear of technology ● Lack of transportation ● Hearing loss ● Vision loss Have an annual vision check to ensure safety. Have an annual hearing test to avoid social isolation. Home Safety Checklist Find Caregiving Caregiving Plan to Download and Print Websites and Apps to Aid Families with Caregiving Support Find a Geriatric Care Manager Moving Support- Find a Senior Moving Manager End of Life Planning POLST Forms

Join hosts Erna and Megan in this heartfelt episode of The Whole Caregiver, where they welcome their friend and guest, Susan Chaityn Lebovits. Susan shares her personal and professional caregiving journey, providing insights into the challenges and solutions she encountered along the way. Susan recounts her experience of stepping up to care for her mother after her father's passing, highlighting the importance of support systems and addressing the emotional and practical aspects of caregiving. With stories of empathy and community, Susan emphasizes the need for early planning and the benefits of building a supportive network before crises arise. The episode also explores Susan's professional path, including her initiative, Ease Into Aging, aimed at supporting caregivers and corporations. Erna, Megan, and Susan delve into the significance of asking for help and fostering a broader community of care. Tune in to discover valuable takeaways for caregivers, including the importance of seeking help, preparing for the unexpected, and embracing a village approach to caregiving. This episode is a touching reminder of the strength found in community and the power of empathy in caregiving. Susan shared some important insights and resources with us that we will include in our show notes for the next three episodes. You can find Susan at Ease into Aging: [email protected] Secure your loved one with a home care organization before there’s an emergency. At the least, do the research and have the information ready! Maintaining social connections is critical to healthy aging for: ● Sense of community ● Strengthening brain synapses to maintain memory ● Physical activity (getting to and from event) Some seniors avoid socializing. Keep in mind that what may appear as being stubborn could actually be: ● Social anxiety ● Concern of finding a toilet ● Painful to walk ● Fear of technology ● Lack of transportation ● Hearing loss ● Vision loss Have an annual vision check to ensure safety. Have an annual hearing test to avoid social isolation. Home Safety Checklist Find Caregiving Caregiving Plan to Download and Print Websites and Apps to Aid Families with Caregiving Support Find a Geriatric Care Manager Moving Support- Find a Senior Moving Manager End of Life Planning POLST Forms

Join Megan for a bonus episode focusing on the importance of self-care during life's many transitions. Having recently moved and faced with a new environment, Megan shares her personal journey of managing anxiety and OCD, particularly the challenges associated with returning to a culture that contributed to her struggles with scrupulosity. Discover how a health coaching session helped Megan realize the weight of her responsibilities and the importance of acknowledging feelings of overwhelm. This episode serves as a reminder that caregiving, while rewarding, can be exhausting and it is okay to seek support when needed. Megan encourages listeners to validate their feelings, embrace both positive and challenging experiences, and find solidarity in shared journeys. Tune in to hear her reassuring message that you're not alone, and we're all doing the best we can.

In this episode, Megan interviews Erna about the ongoing challenges she encountered while caring for her mom. Erna described the following challenges: 1. Scheduling and Traveling: By trying to do everything, Erna realized she had not planned time for herself. Because of this, she made herself sick.  2. Asking for Help: Due to the wise words of a therapist, Erna learned that she was doing too much, and she could rely on others to help with her mom. She used an organization called Visiting Angels: https://www.visitingangels.com/. Episode take homes: It is okay to not be there all of the time or do everything. Also, get therapy if you need it :).  Don't forget to find us on Facebook at The Whole Caregiver or follow us on Instagram @thewholecaregiver. Email us any questions, ideas, or feedback at: [email protected]

In this episode, Erna interviews Megan about the consistent challenges related to family caregiving in her life. Megan identifies: 1. Sleep (or lack of) 2. The difficulty of transitioning care during a move.  With caregiving, Megan has lived in four different states and has navigated the health and school systems with her kids. A big surprise with this current move was the nurse ratios at the school, which are far below the national recommendations of 1 nurse per 750 children as a minimum. With the growing complexity of child health, these ratios should be even further reduced. Here is more information about school nursing and safe ratios, if you want to reach out to school boards and state legislators: https://publications.aap.org/pediatrics/article/137/6/e20160852/52405/Role-of-the-School-Nurse-in-Providing-School https://www.nasn.org/nasn-resources/professional-practice-documents/position-statements/ps-workload Our take home is to not forget the power of your voice, and advocate for the helpers such as teachers and nurses among us.  Don't forget to find us on Facebook at The Whole Caregiver or follow us on Instagram @thewholecaregiver. Email us any questions, ideas, or feedback at: [email protected]

Hello and welcome back to The Whole Caregiver! We are excited to launch our second season. This brief episode introduces you to some important changes that will be coming your way this season: 1. Social media engagement! We now have a Facebook page: The Whole Caregiver and an Instagram handle: @thewholecaregiver. 2. Email to share feedback and ask questions: [email protected] 3. Content on social media including episode drops, Quote of the Week, Policy Advocacy with Erna, and Megan's Media Corner.  We look forward to another season with all of you! Thank you for your support!

In this short episode, we reflect on the first season of "The Whole Caregiver," and discuss what is ahead. We have so much gratitude for those who have been interviewed and for our listeners. Thank you for joining us on this journey as we have learned and continue to learn. Please join us next season starting in Fall 2024. Be on the lookout for social media engagement opportunities and ways you can communicate with us about your caregiving experiences and needs.  Thank you and take care!!

As we start wrapping up the season, Erna interviews Megan about caregiving transitions she has experienced. We discuss what might be ahead for Megan with her caregiving responsibilities for growing children and aging parents. The take home from this episode is to be present and accepting of where we are, regardless of whether it fits what we wanted or imagined.  The quote of the week is by James Baldwin: “Not everything that is faced can be changed, but nothing can be changed until it is faced.” Many caregivers can relate to the experience of just having to go through, because sometimes that is the only choice.  Megan mentioned once of James Baldwin's short stories--she called it "Sonny's Song," but it is called "Sonny's Blues." It is a beautiful story and worth checking out.  Our news of the can be found here: https://fortune.com/well/2024/05/20/health-care-low-trust-health-literacy-cvs/ This article had sobering statistics about health literacy and how far we need to go in ensuring individuals have access to and can understand the health care system in the United States.  Thank you for listening. We look forward to engaging with you more on social media and other outlets. 

For this episode, we welcome a wonderful guest, Lindsay Fernandez. Lindsay Fernandez is a bereavement counselor, certified grief educator, certified grief movement guide, and founder of Life After Loss. Lindsay has navigated family caregiving with her mother, as well as the deep grief of her mother's death. Lindsay provided beautiful and insightful experiences and information for anyone who has been, is, or will be working through grief. We are so grateful for her time and expertise. We have provided additional information if you want to learn more about Lindsay and her work: Her Instagram handle: https://www.lifeafterloss.co/blog/learning-to-live-without-you Our news item of the week focuses on paid caregivers, essential workers who deserve higher wages for the care and work they do. The article Erna highlighted addressed paid caregivers in Nebraska and the impact of increasing wages for these folks. Importantly, when these caregivers are paid a living wage, or higher than a living wage (ideally), the economy can be more robust, family caregivers receive some reprieve, and everyone is more well (paid caregivers, family caregivers, and the people receiving care).  https://theconversation.com/paying-caregivers-more-could-boost-nebraskas-economy-new-research-227646 We will end with the quote of the day, which is the Serenity Prayer. This prayer represents a spiritual orientation to life that is used in Alcoholics Anonymous and other 12-step programs. It is most often attributed to Reinhold Niebuhr, an American theologian.  "God grant me the serenity to accept the things I cannot change, the courage to change the things that I can, and the wisdom to know the difference." Thank you for spending time with us! Take good care.   

This week we had the privilege of interviewing Cindy, a nurse and family caregiver who has a remarkable story about caring for her daughter with Hirschsprung's Disease. During the interview, we found ourselves in awe and in tears. We are super grateful to Cindy for sharing her time and insights with us. For those who may not have understood some of the terminology, we have some definitions below.  Our quote of the week was from Pema Chödrön: "The off-center, in-between state is an ideal situation, a situation in which we don’t get caught and we can open our hearts and minds beyond limit."  Our news of the week was: https://www.aarp.org/caregiving/home-care/info-2024/carehaus-baltimore.html This article talked about an intergenerational cohousing community in Baltimore for older adults. They will reside in the community with caregivers and caregivers' families. This housing setup will benefit all involved by providing an affordable space to live, work, and socialize. We could not help but think of Rachel Cohen and her inspiring interview in which she shared the value of intergenerational communities. Definitions:  -TPN (Total parenteral nutrition): nutrition that is delivered through an IV to bypass the digestive system.  - Ileostomy: a surgical opening connecting the ileum (part of the small intestine) to the skin surface to allow for stool to pass into a collection bag.  - Hirschsprung's Disease: a birth defect where the nerve cells that affect the colon do not work. This can lead to serious issues such as infection. - Thymoglobulin - ED (Emergency department): AKA emergency room. - GI (Gastrointestinal): the digestive system starting at the mouth and ending with the anus.  - Vent (Ventilator): a machine that helps someone breathe. - IV (Intravenous): A plastic tube placed in a peripheral vein for fluids and medication.  - Central line: A line like an IV that provides access to veins near the heart.  - PICC (Peripherally inserted central catheter) line: A line like an IV that provides access to veins near the heart. It is generally inserted in the arm where it bends.  - Port (Port-a-cath): A type of central line that is surgically embedded underneath the skin and accessed with a specialized needle called a Huber needle. - Heparin: A type of medication that is used to prevent clots in central lines. It may also be used to treat clotting issues.  - IVIG (Intravenous immunoglobulin): An antibody treatment that is used to treat  autoimmune, infectious, and inflammatory conditions. It is given through an IV.   

This week, we had the privilege of interviewing Annie, a family caregiver of two adult children on the autism spectrum. She shared her insights about supporting her children into adulthood, while also maintaining other important family relationships. We are so grateful to Annie for her time and wisdom! Our quote of the week was from Megan and it was short and sweet: "Change is hard." We recognize that there are always opportunities for growth and good things with change, but that does not diminish the difficulty of it. Our news of the week can be found at this link: https://www.whitehouse.gov/briefing-room/statements-releases/2024/04/09/fact-sheet-biden-harris-administration-highlights-substantial-progress-on-the-presidents-care-agenda-during-month-of-action-on-care/ This highlights President Biden's support for care workers and recognizes the important work they do in caring for children, older adults, and those with disabilities and chronic health conditions. Sometimes the line between care worker and family caregiver is not that distinct, and we want to celebrate all those who do the work. The best way we can do this is by supporting policies that enable health and well-being for care workers and family caregivers. 

This week, Erna gives us a deeper perspective of her experiences as a caregiver. She describes the transitions she experienced throughout her twenty-year caregiving trajectory, including the transition away from caregiving when her mother died. For those caregivers experiencing such transitions, it can be a time of both growth and deep difficulty. We see you.  To go along with our topic, here is our quote of the week from Ecclesiastes Chapter 3 verses 1-4: "To every thing there is a season, and a time to every purpose under the heaven: A time to be born, and a time to die; a time to plant, and a time to pluck up that which is planted...a time to break down, and a time to build up; A time to week, and a time to laugh; a time to mourn, and a time to dance;" We recognize that life is lived in the transitions and ups and downs, which is often the fundamental nature of caregiving.  Our news of the day is about a grassroots movement at Pinterest, now called the Pinterest Caregivers group, which has influenced policy and culture at the company: https://www.forbes.com/sites/christinecarter/2024/04/01/pinterest-employees-drive-policy-and-benefits-change-boost-productivity/?sh=268a6d29187e Thank you for joining us!

In this episode, Megan introduces the topic of transition with her experiences as a nurse, researcher, and family caregiver. The next several episodes will focus on transition experiences, starting with Erna and followed by some podcast guests. The quote of the day is attributed to Abraham Maslow: “One can choose to go back toward safety or forward toward growth. Growth must be chosen again and again; fear must be overcome again and again.” The caregiver news item is an article focused on an organization that offers online support groups and educational programming called Duet. Here is a link with more information: https://www.cbsnews.com/news/family-caregivers-nationwide-support-group-duet-aims-to-help-them/ If you want to learn more about Megan’s family caregiving research, here is a link to her Google Scholar profile: https://scholar.google.com/citations?user=HVNx3_wAAAAJ&hl=en  

Hello and welcome to our podcast this week! We have a wonderful friend and guest, Rachel Cohen. She has a robust background in aging and intergenerational communities. She is so many things, but a few of the many are: a caregiving and community advocate, a wife, a duck mom, the founder and CEO of a consulting firm called Aging Dynamics, the Executive Director of LinkAGES Connects, and co-designer and instructor for Change Makers, a course at the University of Colorado Denver.  If you would like to find out more about Rachel's work, here are some links to explore:  https://www.aging-dynamics.com https://www.LinkAGESconnects.org https://www.ucdenver.edu/change-makers   We talked about intergenerational communities and some innovations to promote intergenerational or multi-generational living and being including parks and housing. In addition, we discussed the importance of intentional programming to foster better community awareness and support, and taking responsibility at both the individual and systems levels to improve community cohesion and care for those aging among us. Which, let's be real, is all of us.  In closing, here is our quote and news of the week:  Quote of the week: "In Africa there is a concept known as 'ubuntu' - the profound sense that we are human only through the humanity of others; that if we are to accomplish anything in this world it will in equal measure be due to the work and achievement of others." Nelson Mandela News of the week: "In October, nonprofit Area Agency on Aging 1-B launched the [Caregiver Respite Voucher Program](https://www.caregiverrespiteprogram.org/), which provides informal and family caregivers a voucher worth up to $575 to pay for respite care, or temporary relief from caregiving responsibilities." https://www.hometownlife.com/story/news/health/2024/01/02/caregiving-vouchers-southeast-michigan-area-agency-on-aging/72086273007/

We are pumped to dive into our topic of the month: Caregiving in Community. To open the show, Megan shared a Yiddish Proverb for the quote this week: "God gave burdens, He also gave shoulders." We like to think of shoulders as our own and the shoulders of others. As social beings, we need the support of each other to make it through the mess of life. We both shared the importance of having chosen family and of creating community with our caregiving experiences.  Here is our caregiving news: More states are and are also considering additional ways of providing support to caregivers. Here's what Oklahoma is doing.  https://states.aarp.org/oklahoma/what-oklahoma-family-caregivers-need-to-know-about-the-caring-for-caregivers-act For the 2024 tax year, unpaid family caregivers will be able to claim up to $2,000 or $3,000 in tax credits for out-of-pocket costs incurred for eligible expenses, depending upon the person for whom they are providing care. New York state is considering new legislation that would increase the amount of family leave time allowed under New York’s program to 26 weeks and allow for 100% wage replacement.  https://www.observertoday.com/news/top-stories/2024/01/legislation-to-expand-nys-paid-family-leave-proposed/ Yay for the states who are putting their money where their mouth is. Caregivers need all of the support--social, financial, emotional.  Megan mentioned land grant universities, and here is a link to learn more: https://www.aplu.org/about-us/history-of-aplu/what-is-a-land-grant-university/ Thanks for taking time to join us for this episode!

Hello and welcome to our second episode of the month focused on sandwich caregivers. We are really excited to welcome a friend and fellow caregiving advocate, Xue Peng. To us, Xue epitomizes a sandwich generation caregiver. She took on the care for aging parents as well as her nephews. With these responsibilities, she had to leave the workforce for a time. As she will discuss in the show, there were some clear challenges with caring for people at both ends of the aging spectrum.  Before we dive in, here is the quote for this week's episode: “Heroes didn't leap tall buildings or stop bullets with an outstretched hand; they didn't wear boots and capes. They bled, and they bruised, and their superpowers were as simple as listening, or loving. Heroes were ordinary people who knew that even if their own lives were impossibly knotted, they could untangle someone else's. And maybe that one act could lead someone to rescue you right back.” – Jodi Picoult While caregivers are human and are dealing with their own knotted lives, they certainly do so much to untangle the lives of those they support. Thank you to all of you who are doing this work. Also, our news about family caregiving highlighted new AARP Vermont research: https://www.reformer.com/news/study-supports-need-for-paid-family-and-medical-leave-in-vermont/article_07c697aa-c512-11ee-966b-bf840ddde62e.html "Among the financial expenses Vermont’s caregivers have incurred to help care for a loved one, AARP Vermont’s research shows 49 percent are paying for modifications to their or their loved one’s home and 40 percent are buying assistive technology such as a wheelchair, hearing devices and vision aids."  We know that many caregivers contribute significant out-of-pocket funds to support those for whom they care. It is exciting to hear about the states that are acknowledging this and supporting caregiver needs with policy.  Back to Xue! Xue shared so many important insights with us during the show. As part of her Chinese culture, she discussed that being there for her parents and nephews is just what she does. She did not even identify herself as a family caregiver until she was pretty far along her journey. There are many caregivers out there who can relate to this. Taking care of family is who we are and what we do. When her dad had a health scare, Xue dove right in with arranging care, going to appointments, figuring out power-of-attorney, and advanced directives for her parents. She also stepped up to raise her nephews and did the hard work of supporting her nephews during the pandemic while they did schooling at home. That is no easy task and as Erna noted, Xue did a beautiful job providing the support her nephews needed to thrive academically during the pandemic.  Some great takeaways from Xue and this conversation are: -The importance of caregivers talking to and supporting each other like Erna and Xue did. -Letting go and not trying to control everything. -Realizing that we have to do things for ourselves. We do not always have to volunteer to do all of the things. We can step back and take the time we need to be well.  A big thank you to Xue for her wisdom and time!