Navigating the emotional labyrinth of Alzheimer's care can be both heartbreaking and frustrating, especially when personalized care falls by the wayside. Our journey begins with a relatable exploration of these challenges—stories of care facilities that miss the mark on truly understanding their residents, turning beloved family members into mere room numbers. We wrap this poignant narrative with a lighthearted twist, sharing personal anecdotes about how life’s quirks and ailments can be surprisingly comedic.

Enter Tim and Tannis Roberts, the innovative duo behind EchoBox Memory Vault, who are reshaping person-centric healthcare with their groundbreaking tool. Neither were tech people, worked in healthcare, or had a business background.  Yet both were moved to improve our care model by providing the comfort of a loved one's voice. EchoBox preserves cherished memories and stories, enriching family bonds and supporting those dealing with dementia and palliative care. Tim and Tannis share profound insights and personal stories that illustrate how capturing memories can provide lasting emotional benefits and a sense of belonging, transforming the caregiving experience.

This episode celebrates the importance of personal connections and innovation in Alzheimer’s care. We discuss the powerful impact of EchoBox, a technology that helps preserve and share the stories of loved ones, offering caregivers the ability to provide individualized care. 

• Conversations surrounding the emotional challenges of caregiving 
• The dehumanization often faced in care facilities 
• Introduction to EchoBox and its founding story 
• How EchoBox captures memories and personalizes care 
• Real-world examples showcasing its effectiveness 
• Technical details on practically using the app 
• Insights on the growing adoption of EchoBox in care facilities 
• Encouragement for advocacy and connection in caregiving

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What better way to celebrate our 100th episode than with an interview that truly reflects the definition and the title of our show: Love Conquers Alz. Former Wisconsin Gov. Martin J. Schreiber is an award-winning crusader for Alzheimer's caregivers and persons with dementia and author of the best selling novel, My Two Elaines: Learning, Coping, and Surviving as an Alzheimer’s Caregiver.

Since 2016, Marty has been campaigning unlike anything he experienced while in office. Rather than seeking votes, Marty now works to recognize and support Alzheimer’s caregivers – an unpaid workforce that now exceeds 16 million people nationwide. Schreiber's goal for caregivers (whom he calls heroes) is that they learn, cope, survive and even thrive during their difficult journey. All things that Marty learned caring for his beloved wife, Elaine.

Imagine your spouse falling in love with you over and over again. Romantic, right?  But what if they kept falling in love with you because every morning they woke up they’d forget who you were?  The love story of Marty and his wife Elaine that began in the 1950s when they were high school freshmen began to take the cruelest of twists when Elaine, diagnosed with Alzheimer's, gradually transformed from the woman who had gracefully entertained in the Executive Residence to one who sometimes no longer recognized Marty as her husband.  Yet, the two still found moments of joy which Marty lovingly talks about in his acclaimed My Two Elaines.

We share insights from "My Two Elaines," a poignant memoir that highlights the emotional journey from partner to caregiver, offering practical advice on therapeutic fibbing and redirection. The episode underscores the importance of male caregivers seeking help and stepping away from outdated stereotypes, as we discuss the necessity of systemic reform in care facilities.

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Betsy Wurzel started her career as a Talk Show Host at Passionate World Talk Radio and the name of her show was Chatting with Betsy. Betsy is also is an unwavering advocate for Alzheimer's caregivers who shares her own heartfelt experiences caring for her husband, Matt Sloan. Her stories are candid and passionate and truly exemplify the transformative power of love, humor, and community in the difficult landscape of dementia care.

Shifting gears, we confront the murky waters of hospice care—a field riddled with misconceptions and often misunderstood protocols. Misunderstandings about hospice care and the rights of patients can lead to inadequate pain management, affecting the dignity and well-being of those with dementia. Through our unvarnished discussion, we unearth Betsy's personal story of advocacy, emphasizing the critical role caregivers play in ensuring comfort and respect for their loved ones. This chapter serves as a poignant reminder that caregivers must be steadfast in their rights to demand the best care possible.

Finally, we tackle the systemic challenges plaguing senior healthcare, from understaffing and inadequate training to the pitfalls of profit-driven care models.  Betsy guides us through a sobering exploration of these issues, pointing out how they result in inconsistent care for vulnerable populations, like those with Alzheimer's. With a call to action for more compassionate and consistent caregiving, she stresses the importance of prioritizing people over profits, advocating for a system that values quality care above all. Through this inspiring episode, we aim to empower caregivers to fight for the dignity and quality care their loved ones deserve.

Connect with Betsy:
Email - [email protected]
IG
FB
LinkedIn

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In Episode 98, Don and I have a fantastic conversation with Dr. Marc Rothman, MD,founder and president of the Dementia Spring Foundation, a non-profit 501(c)(3) venture studio that invests in visual and performing artists and innovators who are changing the prevailing narrative of dementia and bringing joy and creativity to the dementia community through their work. Founded in 2020, the Artist Network now includes over 200 artists and innovators from around the world who are grappling with memory loss, Alzheimer’s disease and other dementias in their work. New artist Spotlights are shared every week on the Dementia Spring website. (Including our Oscar qualified short film, My Mom and the Girl ,starring Valerie Harper in her final performance!!)Through the Foundation’s annual, competitive Dementia Arts Impact Award program, funding, technical & marketing support, and subject-matter expertise are provided to a select group of artists and innovators who are telling new stories of dementia and bringing theatre, dance, music, and other visual/performing arts programs to those living with dementia.And if that's not enough, Dr. Rothman is also the CEO of Lizzy Care, a company providing tools and resources for dementia care at home.

Join us as our guest,Dr. Rothman, reveals his insights on harnessing artistic talents to enhance caregiving experiences. Discover how integrating art into dementia care not only brings joy and connection but also offers a holistic approach to treatment that blends medical and artistic perspectives, creating a more enriched life for both caregivers and individuals with dementia.

Immerse yourself in discussions on the profound impact of music and visual arts on mental health and healing. We underscore the importance of preserving memories through photography and the ethical considerations that come with sharing such intimate moments. The episode also touches on the cultural shift required in our institutions to prioritize arts therapy, advocating for comprehensive care models that improve quality of life. With personal stories and innovative projects, including virtual reality and comedy, we demonstrate how creativity stands as a beacon of hope and connection for those affected by dementia. And that includes, Love Conquers Alz, of course!
xoxo
Susie

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Elopement usually conjures up visions of secret excursions or maybe even the Elvis Chapel in Las Vegas. But elopement is also used to describe what happens when someone with dementia or cognitive loss leaves a safe area, such as a home or care facility, without supervision or awareness of the potential dangers.  In dementia care facilities, it is a heartbreaking reality that needs urgent attention.

With over 30 years of experience as an occupational-therapist-turned-dementia-coach and 5 years of being a daughter-of-dementia, our guest, Lizette Cloete  OTR/L, CADDCT, CDP, shares her first-hand, personal experience with elopement, how it can lead to accidents, injuries, and even death as a result of hypothermia, malnutrition, and weight loss, and why there is a huge need to protect vulnerable residents living in long term facilities.  Lizette is the owner of “Think Different” Dementia, helping families navigate dementia together, using science-backed strategies, has become a sought-after speaker on dementia-related topics, both nationally and internationally. Her podcast, Christian Dementia Caregiving, is a key resource for connecting and sharing her valuable insights.

In 2023, Lizette was awarded a grant to create an online education and coaching community for family care partners. She is truly a fount of information and support for our caregiving community.  We recount personal stories, including a tragic incident from 1994, highlighting the dire consequences of inadequate staffing and training in these facilities. By sharing these narratives, we stress the critical need for improvements in care and safety measures to protect vulnerable individuals. The broader implications of facility understaffing reveal a pressing need for vigilance and proactive strategies to prevent similar tragedies.

Understanding and managing dementia-related wandering is a complex challenge for caregivers and families. From unpredictable behaviors to ethical dilemmas around monitoring technology, we discuss real-life anecdotes that underscore the relentless nature of wandering. With hopes pinned on proactive engagement and innovative solutions, we aim to inspire meaningful change in caregiving practices, ensuring the safety and well-being of loved ones.

Connect with Lizette: Think Different Dementia
Christian Dementia Caregiving

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In honor of Residents’ Rights Month, Don and I, along with our special guest-host, Producer Rick Mountcastle, the former US attorney famed for his role in the Purdue Pharma case,  are highlighting the importance of listening to residents who live in our country’s nursing homes, assisted living and board and care facilities.

In episode 96, our guest, AARON ADAMS, helps us explore the emotional labyrinth of healthcare navigation which in too many cases isn't always kind.  Aaron is a son, author inventor and former caregiver for his father, Thomas Adams, was a robust 75-year old.  After treatment for heart issues, Thomas was sent to an acute rehab hospital.   

Through Aaron's poignant personal story caregiving for his father, we unveil the harsh realities of seeking adequate medical care and the systemic flaws that many families encounter. From Aaron's fiery exchange with healthcare providers who underestimated his father's needs, to the desperate struggle of a family fighting against hospital bureaucracy to grant their father a peaceful end at home, these narratives underscore the dire need for advocacy and transparency. Rick Mountcastle lends his legal expertise, dissecting these challenges and providing a sobering perspective on patient neglect and the systemic issues at hand.
In a world where medical decisions can feel like a battlefield, the emotional rollercoaster of advocating for loved ones becomes evident. As families grapple with complex treatments and the ethical dilemmas surrounding end-of-life care, they find themselves questioning the motivations of medical professionals and the adequacy of patient care.

The stories shared here emphasize the importance of informed advocacy, the emotional toll of feeling sidelined, and the sacrifices made to ensure dignity and respect for loved ones. Join us as we unravel these deeply personal and universal struggles, offering insights and solidarity to those navigating similar journeys.

Connect with Aaron Adams on Facebook.

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How can a system meant to care for our most vulnerable turn into our worst nightmare? Join us as we kick off a special series of Love Conquers Alz episodes, inspired by our soon-to-be-released documentary, "No Country for Old People." We’re honored to have Rick Mountcastle, former U.S. attorney and co-producer of our documentary, with us. Rick offers his eye-opening experiences prosecuting nursing homes for fraud and abuse.  Together, we hope to shed light on the urgent need for public awareness and collective action to combat the systemic neglect rampant in the long-term care industry. In this series, we will present personal narratives that serve as powerful calls to action, urging us to demand better care standards and advocate for systemic change.

In this episode, we feature the poignant account of Jen Trejo, who faced unimaginable hardship after her son Christopher (whose story was featured in the Netflix limited series "Painkiller") was prescribed OxyContin. From a mother's gut-wrenching moment of signing surgery papers for her son, to the neglect suffered within skilled nursing facilities, her story uncovers the severe failings of our profit-driven healthcare system. Jen shares the struggle of finding appropriate care for a loved one with a history of drug addiction and the frustrations of a system that prioritizes financial considerations over patient care. Jen also talks about the poor conditions in certain facilities and the lack of support for patients with more intensive care needs are also examined.

We also explore the transformative power of love and advocacy in these challenging times and how collective efforts have sparked progress, especially in addressing the opioid crisis and improving caregiving standards.

From the emotional toll of dealing with addiction and inadequate medical care, to the relentless pursuit of improvement despite resistance, this episode underscores the importance of empathy, persistence, and the human spirit in driving change. Tune in and join us in our mission to make a real difference.
FACEBOOK
Instagram

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What if the shift towards for-profit hospice care models is compromising the quality of your loved one's final days? In this episode, Don and I have a robust conversation on hospice with Penny Hawkins Smith, BSN, RN, CHPN.  Hospice Nurse Penny, as she is known to her millions of social media followers, is a nationally certified hospice and palliative care registered nurse with over 17 years of experience  with a passion for hospice advocacy and normalizing death and dying.   

Have you ever wondered how hospice care is funded and what services are actually covered? We break down the often-misunderstood world of hospice care funding, highlighting the system used by nonprofit agencies and detailing the array of services provided under this model, as well as the hidden truths behind the financial practices of many hospice agencies and their unsettling impact on patient care. We confront the alarming rise in Medicare spending and the exodus of physicians from the field. The episode also tackles the aggressive marketing strategies in the industry and the emotional turmoil families face when navigating palliative and hospice care. From the importance of clear communication and family advocacy to the systemic hurdles within end-of-life care, this conversation offers insights and personal stories that resonate deeply.

Navigating the maze of hospice care decisions can be daunting, especially when facing ethical dilemmas and advocating for compassionate treatment. We explore the critical role of hospice advocacy, the rights of patients and families, and the often-overlooked challenges of caregiving in nursing homes. Through personal anecdotes and professional insights, we shed light on the importance of respecting patient dignity and goals, and the necessity for better education and support in end-of-life decisions. Join us as we call for empathy, open dialogue, and a more humane approach to hospice and elder care.

Follow Hospice Nurse Penny on TIKTOK

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Can human connection and dignity survive in a profit-driven healthcare system? On this episode of "Love Conquers Alz," we are joined by the talented artist and filmmaker Teace Snyder, who introduces his thought-provoking film "Hold Me." The film explores the emotionally charged and controversial topic of voluntary euthanasia, focusing on a woman whose job is to comfort individuals in their final moments. Teace shares the poignant inspiration behind the film, highlighting the ambiguous professional role of a "holder" and how the film raises essential questions about human connection, grief, and end-of-life care. Our conversation with Snyder sheds light on the delicate balance between personal choice and ethical implications in these profound moments.

Our discussion expands to the broader issues of systemic neglect and the isolating experiences of the elderly and sick in our healthcare system, especially during the COVID-19 pandemic. We draw parallels to solitary confinement and critique the pervasive influence of money in healthcare, particularly within the hospice system. Through a candid examination of systemic corruption and the hidden influence of the nursing home lobby, we aim to inspire grassroots movements and honest conversations. Our goal is to foster empathy and prioritize human dignity in a system too often driven by profit. Join us as we navigate these complex topics with hope and a commitment to meaningful change.

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In Episode 92, Don and I talked with three prolific writers who have made profound literary  contributions to the Dementia community and now pooled their talents and love of poetry to launch a beautiful anthology, “Poetry For the Dementia Journey”, that sprung from an online event featuring over 30 poets. (This just may be one of my favorite episodes!!)
Marianne Sciucco is not a (dementia) nurse who writes but a writer who happens to be a nurse.  Her novel, Blue Hydrangeas, an Alzheimer’s Love Story, is a testament to the power of love in the face of this heart wrenching disease.  She has since launched her own podcast “Untangling Alzheimer’s and Dementia: An AlzAuthors Podcast” and is the Co-founder of the non-profit AlzAuthors.com, a global community of over 300 dementia-centered writers.
Ann Campanella is the manager/director of AlzAuthors and is a former magazine and newspaper editor. She is the author of two award-winning memoirs and four collections of poetry. Her first memoir, Motherhood: Lost and Found, tells the story of her mother’s descent into Alzheimer’s and was named “One of the best Alzheimer’s books of all time,” by Book Authority two years in a row.
Sue Fagalde Lick has been n

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