In this wrap-up episode, we discussed the "Caregiving Youth Hidden in Plain Sight" special series, a collaboration between JJ and Natalie and My Care Friends CEO Todd Keitz and Katie Seymour (VP of Programming and Community). We were all amazed at how eye-opening it was to learn about the challenges faced by young people caring for family members with disabilities or illnesses. We highlighted the wisdom and resilience shown by many of the youth caregivers featured while acknowledging the need to support those struggling.

In this episode, we underscored the vital role of policies, programs, and community coordination in identifying and assisting youth caregivers, drawing inspiration from successful initiatives in the UK. We stressed the ongoing need to raise awareness and provide resources to connect youth caregivers with the support they need. We urged our listeners to visit the podcast's website, where they can access the full series and contact information for the various organizations featured. We aim to create a centralized hub of information, empowering and assisting this often-overlooked population.

We also discussed the hidden nature of many caregiving programs and the challenge of self-identification among youth caregivers. We discussed ways to help overlooked youth, including a broader focus beyond the US, and the significance of awareness within the community, including schools and teachers.

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We are honored to hear from two extraordinary young women, Alia and Nahla Ahmed, who have been caring for their mother since the ages of 10 and 8. Their story is one of resilience, responsibility, and the unbreakable bond of sisterhood.

Alia (16) and Nahla (14) candidly share how their lives were upended when their mother suffered a debilitating polio relapse amidst the stress of moving their family. With no other relatives nearby, these remarkable teens became their mother's primary caregivers, tackling everything from helping her walk to managing the household. Their dedication and maturity beyond their years are truly inspiring as they navigate the challenges of balancing schoolwork, social lives, and the ever-changing needs of their beloved mother.

Throughout their journey, Alia and Nahla have faced misunderstandings from teachers and peers who fail to grasp the full scope of their caregiving responsibilities. Yet, these young trailblazers refuse to be defined by their circumstances, finding solace in the support of organizations like Australia’s Little Dreamers and the power of their unbreakable sisterly bond. Their story is a testament to the strength and resilience of caregiving youth, hidden in plain sight, and a reminder that these remarkable individuals can thrive with compassion and understanding.

About Alia:

Alia Ahmed is 16 years old and has been a carer for her mother since she was 10, following her mother's polio relapse. Initially, she helped her mother walk before she got crutches. Now, Alia assists with appointments, cooking, cleaning, and providing overall support and companionship.

About Nahla:

Nahla is 14 years old and has been caring for her mother since she was 8. In late 2018, Nahla, her sister, and her mother left their family home due to domestic violence. Shortly after, her mother experienced a polio relapse, initially undiagnosed, which required Nahla and her sister to help her walk until she received crutches. At home, Nahla and her sister assist with cooking and cleaning to make things easier for their mother.

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This episode highlights the impactful work of Lorenzo's House, supporting youth and families dealing with younger onset dementia. Featuring Olivia Compton, a 15-year-old youth leader, and Patti LeFleur, who leads the organization's youth programming, the discussion delves into empowering young caregivers.

Olivia shares her journey, explaining how she found support and community through Lorenzo's House after her father was diagnosed with Lewy Body Dementia. She describes the transformative impact of the organization's "light club" groups, which provide a safe space for young people to connect, share experiences, and learn mindfulness techniques. Patti elaborates on Lorenzo's House's three core programs - the match, clubs, and youth summit - all aim to combat isolation, build alliances, and drive dementia justice. The discussion highlights the organization's commitment to centering youth voices and experiences and empowering young caregivers to advocate for change.

Olivia's wisdom and resilience shine through as she offers advice to other youth navigating the challenges of having a parent with dementia. The episode underscores the critical need to support caregiving youth, who often face stigma and struggle to find resources tailored to their unique experiences. Lorenzo's House emerges as a beacon of hope, providing essential services and fostering a growing community of young advocates determined to make a difference.

About:

Olivia:

Olivia, a 15-year-old 9th grader, is a vital part of Lorenzo's House. After her father's Lewy Body Dementia diagnosis, she found community in the Teen Light Club and served as a Youth Lead at the 2023 and 2024 Youth Summit. Olivia leads mindfulness sessions, openly shares her story, and warmly welcomes others. A talented pianist, cellist, and choir singer, she enjoys video games, reading, crafts, and anime. Passionate about helping peers through similar challenges, Olivia cherishes the connections and friendships she's built at Lorenzo's House.

Patti:

Patti is the former carepartner to her mom, Linda, who had younger-onset dementia - and a former elementary educator of over 10 years. Patti designs and leads our youth programming with intentionality, knowledge and love. Her capacity to connect with family members through lived experience and profound generosity of spirit sets the tone for how Lorenzo’s House shows up for families. Patti has a Masters Degree in Instructional Leadership and is a Certified Dementia Practitioner, has spent countless hours volunteering with people living with neurocognitive disorders, and as a community educator for the Alzheimer’s Association.

Social Media:

Website: https://lorenzoshouse.org/

Facebook: https://www.facebook.com/lorenzoshouseofficial/

Instagram: https:

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This week, we’re shining a light on the inspiring stories of two young caregivers, Aaliyah and Samiha, from Canada. At just 14 years old, Aaliyah has been caring for her younger sister with autism her entire life. She shares how she supports her sister's social interactions, helps with schoolwork, and even shares her passion for rock climbing. Aaliyah’'s courage in the face of such responsibilities is inspiring. She found an outlet in the sport, using it as a way to channel her energy and reduce stress from the added responsibilities of caregiving.

Samiha's story is equally powerful. She began caregiving at the age of 11 when her mother was diagnosed with ALS. Now 24, Samiha continues to care for her mother, who is on a ventilator and uses eye-gaze technology to communicate. Samiha describes the challenges of being a "sandwich generation" caregiver, caring for her mother while also supporting her younger sister. She credits the young carers program through Hospice Toronto for providing validation, support, and leadership opportunities that helped guide her through those difficult years.

Both Aaliyah and Samiha emphasize the importance of finding community with other young caregivers who can truly understand their experiences. The young carers program gave them a space to be "normal kids" and build connections with peers facing similar circumstances. Their stories highlight the resilience, compassion and leadership skills that often develop in young caregivers, despite the challenges they face. This episode is a powerful testament to the strength of the human spirit in the face of adversity, and the crucial role that community support plays in their journey.

About Samiha Rahman:

I’m Samiha, a 24-year-old young caregiver from Toronto, Canada. I graduated with a Bachelor of Medical Sciences in 2022 from Western University and am going back there this fall for Medical School. Since graduating, I’ve been working at Hospice Toronto, a non-profit organization that I’ve been a part of for almost 10 years (with their Young Carers Program). I love spending time with my friends and family, walks by the lake, and trying new restaurants.

About Aaliyah Zarem:

I am a 14-year-old older sister and competitive rock climber. I also love camp and canoe trips.

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This week’s special policy panel, featuring experts Marvell Adams Jr. and Toni Gingerelli, discussed policy change and support for caregiving youth. They highlighted the significant gap between the estimated 5.4 million youth caregivers and the likely much larger actual number, emphasizing the need for better data collection through school-based assessments and self-reporting to understand this hidden population's challenges and experiences.

The discussion, featuring Marvell Adams Jr. and Toni Gingerelli, covered the impacts of youth caregiving, such as educational disruptions and mental health struggles. They emphasized the need for recognition, resources, and inclusive policies, praising the national strategy to support family caregivers while calling for more inclusivity of youth caregivers. The conversation highlighted the urgent need for equitable, innovative, and collaborative policy solutions to better serve caregiving youth.

About:

Marvell Adams Jr. is the CEO of Caregiver Action Network (CAN), dedicated to serving caregivers, marginalized communities, and older adults. Inspired by Alzheimer’s disease since high school, he holds a Bachelor’s in Political Science and a Master of Healthcare Administration specializing in Aging Services. CAN aims to improve the quality of life for millions of family caregivers supporting loved ones with chronic conditions, disabilities, or diseases.

Website: www.caregiveraction.org/
Facebook: @CaregiverActionNetwork
Instagram: @caregiveraction
Linked In: @caregiver-action-network
YouTube: @CaregiverAction
TikTok: @caregiveraction

Antoinette 'Toni' Gingerelli, Director of Policy and Advocacy for the National Alliance for Caregiving, translates research into policy for America's 53 million family caregivers. She oversees operations for Act on RAISE, Caregiver Nation Network, and the direct care workforce policy portfolio. Previously Chief of Staff for NJ State Senator Vin Gopal, Toni holds a Master of Public Policy from Harvard Kennedy School and is an advocate for gender equity.

Website: https://www.caregiving.org
Facebook: https://www.facebook.com/NA4Caregiving/
Instagram: https://www.instagram.com/caregiver_nation/
LinkedIn: https://www.linkedin.com/company/national-alliance-for-caregiving/ Twitter: https://twitter.com/NA4Caregiving
YouTube: https://www.youtube.com/c/TheNationalAllianceforCaregiving

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This week’s episode gives us a powerful and insightful look into the life of Aditya Akella, a 16-year-old caregiver for his younger brother with autism. Aditya's story is one of resilience, responsibility, and a deep commitment to his family. From navigating cultural differences in caregiving between India and England to balancing his academic and social life, Aditya's experiences offer a rare and valuable perspective on the challenges and triumphs of being a young carer.

Aditya demonstrates a level of wisdom and maturity that belies his young age. He eloquently articulates the importance of understanding the unique needs of each young carer, rather than making assumptions or providing one-size-fits-all solutions. Aditya's advocacy efforts, including speaking at the House of Lords and participating in a documentary, further highlight his dedication to raising awareness and creating positive change for young carers like himself.

Aditya touches on the importance of self-care and finding balance as a caregiver. He shares his personal strategies, such as spending time with his beloved dog and indulging in the occasional video game or hot chocolate, as ways to recharge and maintain his own well-being. Aditya’s story serves as an inspiration to other young carers, reminding them that they are not alone and that their experiences, though challenging, can also be a source of strength and personal growth.

About Aditya:

A self-described “regular teenager in England”, Aditya is interested in cars, public speaking, sports and politics. He is a proud older brother for his younger brother, age 11, who has severe autism, ADHD, and is non-verbal. Aditya share, “A lot of carers fall into the trap of feeling insecure or restricted by their role, though being a carer is more of a launchpad than it is a well”.

Connect with Aditya:

Linked In: https://www.linkedin.com/in/aditya-akella-349297267/

Blog: https://akellatech.blogspot.com/

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

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Kids Kicking Cancer's work is vital in supporting families navigating the complexities of chronic illness. KKC empowers children with chronic illnesses and their families through the power of martial arts and breathwork. Founder and International Director Rabbi Elimelech Goldberg “Rabbi G” shares his deeply personal story that led to the creation of Kids Kicking Cancer and the organization's remarkable growth from 10 children in 1 facility to over 126 facilities across 10 countries.

Rabbi G, alongside Global Program Director Cindy Cohe, explains the organization's distinctive method - using therapeutic martial arts techniques to assist children in handling pain and stress. KKC also promotes a sense of purpose, peace, and community. Kids Kicking Cancer values the family unit as a whole, offering support not only to the child in treatment but also to siblings, parents, and other caregivers. We discuss the difficulties faced by caregiving youth and stress the significance of establishing a supportive network for these often-overlooked individuals.

They go on to share about The Heroes Circle Pediatric Healing Program, which teaches martial arts meditation, non-contact movement, and breathing techniques designed to empower children to take control of the pain and stress of their illness. Their evidence-based program is taught in-person and virtually by black belt Therapeutic Martial Arts Instructors and is provided to families at no cost. Children 3 years and older with ANY pediatric illness, and their siblings, are eligible for the program.

Social Media:

Website: https://heroescircle.org/

Facebook: https://www.facebook.com/kidskickingcancer

Instagram: @kidskickcancer

Linked In: https://www.linkedin.com/company/kids-kicking-cancer

Twitter: x.com/kidskickcancer

YouTube: https://www.youtube.com/c/KidsKickingCancer

Books/E-Book/Resource: https://a.co/d/0bs6YgyG

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This week, we explore the compelling story of Dr. Feylyn Lewis, who assumed the role of caregiver for her mother at the age of 11. Following an unsuccessful spinal surgery that resulted in her mother's severe disability, Feylyn found herself taking on the responsibilities of a youth caregiver, assisting with her mother's daily needs and medication regimen.

Despite facing significant challenges, Feylyn balanced her caregiving duties with her education and personal life. Her story serves as a testament to the strength and determination of young caregivers, who often bear burdens beyond their years. Through her advocacy and research, Feylyn has become a leading figure in supporting and empowering these unseen heroes, striving to ensure that no child experiences the isolation and fear she encountered as a young caregiver.

Feylyn candidly reflects on her caregiving journey and shares insights into the unique challenges and needs of youth caregivers. Her narrative reminds us of the importance of recognizing and supporting these unsung heroes and underscores the profound impact that even the youngest individuals can have on the lives of their loved ones.

About:

A native of Nashville, Tennessee and a Vanderbilt University alumna, Dr. Lewis grew up as a youth caregiver for her disabled mother. Her experience with caregiving, disability, and living life on the margins led her on a path of global research and advocacy. She has a Master’s degree in Clinical Mental Health Counseling and a PhD in Social Work. Her research focuses on mental health and resiliency in youth and young adult caregivers, and she conducts research in the US, Europe, UK, and Australia. Dr. Lewis currently works as the Assistant Dean of Student Affairs at Vanderbilt University School of Nursing, where she is responsible for providing vision, leadership and strategic planning for student affairs programming that delivers holistic wellness formal support services, student life and community engagement.

Outside of work, she serves as the Vice-President of Diversity, Equity, Inclusion, and Belonging in the Junior League of Nashville and co-chairs the Congressionally appointed PCORI Healthcare Delivery and Disparities Research Advisory Panel, and she sits on numerous other international advisory boards. She currently resides in Nashville where she continues to provide care for her mother.

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Confessions of a Reluctant Caregiver

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