The Whole Care Network

Drs. Barry Jacobs and Julia Mayer join the podcast for a great conversation about bringing your best to caregiving, reminding us that caregivers don’t have to be perfect.  As authors and clinical psychologists, Barry and Julia support family caregivers, guiding them through the messiness of caring for a loved one. As a married couple, they’ve had lived experience with caring for their parents and in-laws with Alzheimer’s and dementia. Dealing with caregiving issues in their personal lives taught them invaluable lessons, which they now share with clients and readers of their books.   Barry and Julia’s newest book is the “AARP Caregiver Answer Book” - Purchase your copy at caregiveranswerbook.com Find the AARP Caregiver Answer Book on the AARP website.  Connect with Dr. Barry Jacobs and Dr. Julia Mayer on their website: loveandmeaning.com Read Barry’s latest blog post “My Care Receiver’s Doctors Don’t Respect My Boundaries” here.  Find Dr. Barry Jacobs on social media: Facebook Twitter (X) LinkedIn Find Dr. Julia Mayer on social media: Instagram Facebook Twitter (X) LinkedIn Bluesky  You can find the Approaching Death Support Kit by End of Life Educator Barbara Karnes at bkbooks.com. Find all of Barbara Karnes’ products and resources at bkbooks.com. Read Barbara’s blog at bkbooks.com. Connect with Barbara Karnes on Facebook IG LinkedIn Twitter (X)  YouTube Hospice Navigation Services understands that you need unbiased, expert support to have the best end of life experience possible.  If you have questions about hospice care for yourself or someone you care about, Hospice Navigation Services can help. Whether you want to connect by phone or video, you can book a FREE 30-Minute Hospice Navigation Session, or a more in-depth 60-Minute Navigation Session for $95. If you need to troubleshoot the care you’re already receiving, we’re here to answer your questions. A 60-Minute Navigation Session by video call allows up to 3 family members to get the same expert information at the same time. We believe you deserve to have good hospice care. Book your session with an expert Hospice Navigator at theheartofhospice.com.   Connect with The Heart of Hospice Podcast and host Helen Bauer Website: theheartofhospice.com Social media: Facebook  Twitter  Instagram LinkedIn

Meet Scott Lien, a working family caregiver and member of the sandwich generation, who navigated the loss of four parents and in-laws over twelve years. His caregiving journey, combined with his extensive tech background, inspired him to co-found GrandPad, a user-friendly platform designed to keep seniors connected and engaged. In this episode of the Happy Healthy Caregiver podcast, Scott and I dive into practical ways families and society can combat senior isolation and loneliness. We also explore the unexpected benefits—such as reducing elder fraud and financial scams—and how fostering meaningful connections can help us all live without regrets. Plus, Scott shares wisdom from the “super seniors” he works with and reveals his secrets to ensuring joy in every day. And…stay tuned for how you can take advantage of an exclusive GrandPad offer for the HHC Community!

Poet Marjorie Maddox and acquisitions editor Sheila Luna join host Marianne Sciucco to discuss the healing power of poetry, the realities of long-distance caregiving, and finding hope through the complexities of Alzheimer’s and dementia. Maddox’s, recent collection, Seeing Things, explores the tangled emotional landscape of dementia caregiving. The discussion examines the ways poetry can illuminate and comfort those touched by memory loss. Marjorie reads several of the poems, a gift to all . The conversation moves beyond the personal to the universal. Marjorie shares that many poems in Seeing Things draw on her caregiving experiences for her mother, who lived with dementia, as well as her supportive role with her father-in-law—both journeys complicated by long distance and pandemic separation. As Marjorie admits, “You do feel so isolated when you’re going through it,” but the overlap in experience and shared vulnerabilities make poetry a communal space for catharsis. Poems in the collection touch not just on family memories but also larger societal losses—mass shootings and cave rescues—drawing lines between personal and collective grieving. Marianne and Marjorie bring up a topic rarely discussed: the fractured roles in family caregiving, particularly for long-distance caregivers. Marjorie, based in Pennsylvania, supported her mother by daily phone calls and periodic visits, while her sister managed in-person care in Phoenix. Meanwhile, her brother handled the finances. These divisions, while pragmatic, often go unrecognized, and both the emotional and practical burdens can be immense. The episode closes on the essential role of poetry—and storytelling—in chronicling caregiving journeys and connecting with others who walk a similar path. Whether it’s through a poem, a book, advocacy, or acts of compassionate service, these stories, hard-won and deeply personal, help others feel less alone. As Marjorie shares: “Being there for those little moments…even when you don’t feel like you’re doing anything, just holding someone’s hand… still does a lot.” And, perhaps, reading or writing poetry about those moments offers a light, a “slice of joy,” for a world too often shaped by loss. After the Podcast Purchase Seeing Things Learn about the Moderators Marianne Sciucco Sheila Luna About the Podcast AlzAuthors is the global community of authors writing about Alzheimer’s and dementia from personal experience to light the way for others. Our podcast introduces you to our authors who share their stories and insights to provide knowledge, comfort, and support. Please subscribe so you don’t miss a word. If our authors’ stories move you, please leave a review. And don’t forget to share our podcast with family and friends on their own dementia journeys. We are a 501(c)(3) charitable organization totally reliant on donations to do what we do. Your generosity will help cover our many operating costs, which include website hosting and maintenance fees, service charges to keep things running smoothly, and marketing expenses to promote our authors, expand our content, improve our reach, and more. Our ongoing work supports our mission to lift the silence and stigma of Alzheimer’s and other dementias. To sustain our efforts please donate here. Ideas and opinions expressed in this podcast belong to the speakers and not AlzAuthors. Always consult your healthcare provider and legal and financial consultants for advice on any of the topics covered here. Thanks for listening. We are a Whole Care Network Featured Podcast Proud to be on The Health Podcast Network Find us on The World Podcast Network and babyboomer.org Want to be on the podcast? Here’s what you need to know. We've got merch! Shop our Store

We’re getting back to the basics of hospice care, sharing information about complaints, when to make them, and what should happen when you do. Hospice Social Worker Lisa Pahl (creator of The Death Deck and End of Life Deck) helps drive this discussion. Here are a few highlights from our discussion: •Patients and/or caregivers have a right to make a complaint. •There are numerous reasons a complaint might be needed: visits aren’t being made, symptoms aren’t being managed, response time is slow, or the care is out of alignment with the beliefs or needs of the patient. •Care of a hospice patient should never be rough or insensitive - this is always a reason to make a complaint. •If delivery of medications or medical equipment (DME) is very late or doesn’t happen, a complaint should be made. •A complaint can be given directly to the case manager or director/administrator of the agency. •The hospice agency should immediately investigate, talk to everyone involved, and work to resolve the issue to the satisfaction of the patient or caregiver. •If the hospice agency doesn’t resolve the complaint in a timely manner or to the point the patient/caregiver is satisfied, the complaint can be elevated to the state organization that provides licensure to hospice agencies. It might be the Health and Human Services Department for the state. •The hospice agency is required to furnish the patient/caregiver with contact information about making complaints, including the information for their accrediting organization. (This could be Joint Commission, CHAP, or ACHC).  Connect with Lisa Pahl, owner/creator (thedeathdeck.com) The Death Deck and End of Life Deck     Find The Death Deck on social media: Facebook  IG  LinkedIn You can find the Approaching Death Support Kit at bkbooks.com. Find all of Barbara Karnes’ products and resources at bkbooks.com. Read Barbara’s blog at bkbooks.com. Connect with Barbara Karnes on Facebook IG LinkedIn Twitter (X)  YouTube Hospice Navigation Services understands that you need unbiased, expert support to have the best end of life experience possible.  If you have questions about hospice care for yourself or someone you care about, Hospice Navigation Services can help. Whether you want to connect by phone or video, you can book a FREE 30-Minute Hospice Navigation Session, or a more in-depth 60-Minute Navigation Session for $95. If you need to troubleshoot the care you’re already receiving, we’re here to answer your questions. A 60-Minute Navigation Session by video call allows up to 3 family members to get the same expert information at the same time. We believe you deserve to have good hospice care. Book your session with an expert Hospice Navigator at theheartofhospice.com.   Connect with The Heart of Hospice Podcast and host Helen Bauer Website: theheartofhospice.com Socialmedia: Facebook  Twitter  Instagram LinkedIn

Is the Medicare GUIDE Program for you? Today Nancy and I are sharing insights from Amy Imes of Emory's Integrated Memory Care about the new Medicare Program GUIDE. We're going to help you understand what it is and how to know if you can leverage it. We're sharing three tips. We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer's and other types of dementia, we are so excited to share this information with you. This is an awesome opportunity to learn about the US Medicare GUIDE Program. With big announcements happening on July 1, 2025, we're excited to give you an overview so you can understand how you might participate in the GUIDE program. Let us introduce you to Amy. Amy Imes is a gerontological nurse practitioner who is a trusted expert in geriatrics, demonstrating a deep understanding of the unique healthcare needs of the aging population. Throughout her career, Amy has played a pivotal role in building care models—that's important to the GUIDE program—and developing teams that yield superior outcomes. In addition to her clinical work, she is a member of the team at Emory's Integrated Memory Care, which is a nurse practitioner-led primary care practice for patients living with dementia. She's also the program lead for the Medicare GUIDE Program at Emory Healthcare. GUIDE stands for Guiding an Improved Dementia Experience. It is a US Medicare pilot program that aims to provide better support and resources for persons living with dementia and their caregivers. Which is awesome. You should know that it's a pilot program. Please let's all support it because we need to prove that this pilot program which focuses on helping dementia caregivers actually works so that this can become a standard part of Medicare and can also be expanded globally. It would be ideal for the US to prove it's worth so that we can help other countries take advantage of these kinds of support because they're watching and they're aware of it. This is a groundbreaking program that is being offered around the country. So definitely we want to show up and show out as people tend to say sometimes. As of today, July 1st, there are approximately 390 programs across the country that have been vetted by Medicare to provide this program, and so it is really going to have an impact for persons living with dementia. Full Show Notes https://thecaregiversjourney.org/39-is-the-medicare-guide-program-for-you-three-essential-tips-alzheimers-and-other-dementias/ Additional Resources Mentioned To find a guide program near you: Go to this CMS website page and put in your state and under models select ‘Guiding an Improved Dementia Experience (GUIDE) Model’ Then click ‘Display selected’ You can use the plus and minus signs in the upper right corner to zoom in closer to your area and find the program closest to you. There may be several who cover your zip code so explore options Emory Integrated Memory Care: https://www.emoryhealthcare.org/centers-programs/integrated-memory-care-clinic Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney Takeaways What the Medicare GUIDE Program Offers One-on-one support and coaching by dementia prevention providers Care navigation through an often difficult and chaotic healthcare system Education and training resources for caregivers Respite care Tip 1: Understand Your Eligibility Tip 2: How to Find a GUIDE Program Near Me Tip 3: How to Integrate GUIDE with Your Existing Medical Team About Emory's Integrated Memory Care GUIDE Program For those in the Atlanta area, Emory's Integrated Memory Care is led by nurse practitioners who are all dementia specialists and geriatric specialists. They bring everything under one umbrella with geriatric psych, licensed social workers, and RNs on their team. This eliminates doctor hopping and multiple visits. Read More in This Blog here

On what was supposed to be Gavin's last day of his cancer treatment, everything changed in an instant. In this episode of I Saved You. Now, Do the Dishes, I share the story of an unexpected and frightening detour — a rush to the ER that none of us saw coming. This episode dives into the emotional whiplash of caregiving: the mental load, the constant uncertainty, and how quickly a “normal” day can unravel. It’s raw, it’s real, and it’s another reminder that caregivers are constantly navigating the line between hope and emergency. If you’ve ever felt like the ground shifted beneath you in an instant, this one’s for you. If you're a family caregiver, reach out to Carrie at www.carrieseverson.com or follow at https://www.instagram.com/authorcarrieseverson/. In I Saved You. Now, Do the Dishes, Carrie discusses the importance of caregiver support as she reflects on being a family caregiver during her husband's cancer journey. She shares stories and tips from her experience, highlighting the need for essential caregiver resources. As season one comes to a close, she teases the return of the podcast in the fall.

What is the legacy of a legend facing Alzheimer's? Join us for a personal talk with Tony Bennett's daughters, Antonia and Johanna. They share insights into their father's life and his Alzheimer's journey. Go beyond fame and sold-out shows with their family's story. Discover how Tony navigated Alzheimer's while sharing his music. Learn about their family dynamics and resilience. Explore how his discipline and muscle memory aided his performances. This episode looks at Alzheimer's impact on a celebrated artist. It also covers family, resilience, and the human spirit's strength. Understand Tony's unique brain and the intersection of fame and this disease. Gain a new view of Tony Bennett's lasting legacy

Alzheimer's and elder care demand our attention not just because millions endure them, but because the systems that are supposed to protect our most vulnerable are fundamentally broken. In light of the upcoming release of our documentary, No Country For Old People; a Nursing Home Exposé, August 1st on Amazon, my producing partner and today's guest host, Rick Mountcastle (whose work prosecuting Purdue Pharma was dramatized in Hulu's "Dopesick") and I are turning our focus on elder abuse.  In this powerful episode, we're joined by Richard Routman, whose 14-year career at the Department of Health and Human Services gave him a front-row seat to nursing home neglect cases, pulls back the curtain on why elder abuse persists despite seemingly robust regulations. The reality is sobering: residents fear retaliation if they report mistreatment, staff worry about losing jobs if they speak up, and facility administrators actively obstruct investigations by altering records or instructing employees to "forget" incidents when questioned by surveyors. Meanwhile, the regulatory landscape remains fragmented between federal agencies, state surveyors, Adult Protective Services, and law enforcement—creating dangerous gaps where abuse reports disappear. Most troubling is how money influences the entire system. The nursing home industry spends hundreds of millions annually on political contributions and lobbying, effectively buying themselves protection from meaningful reform. As Richard notes, ordinary citizens advocating for better care are "fighting with sticks" while the industry fights "with guns." Yet this conversation offers hope through specific action steps. Every county has a Commission on Aging that citizens can join to question officials and advocate for improved oversight. Families should learn their rights regarding documenting care—in many cases, they can legally record conditions despite what staff might claim. Most importantly, Richard reminds us that cultural change starts with rejecting the ageism that treats elder abuse as somehow less urgent than child abuse. Don't miss our documentary "No Country for Old People" launching on Amazon August 1st. Until then, remember that knowledge, community action, and love remain our most powerful tools against a system that too often fails those who built our world. Support the show Be a ROAR-ior!! JOIN THE R.O.A.R. MOVEMENT for quality long term care! Visit the No Country For Old People Website for more information. YOU CAN ALSO SUPPORT THE ABSOLUTELY CRUCIAL PROMOTION OF OUR DOCUMENTARY "NO COUNTRY FOR OLD PEOPLE" BY MAKING A TAX DEDUCTIBLE DONATION THROUGH THE NATIONAL CONSUMER VOICE HERE Follow us on Twitter, FB, IG, & TiK Tok 💜 Listen on your favorite platform 💜 If you like what you hear leave us some love. 💜

When Rachel Shapiro’s daughter suffered a severe stroke just before her second birthday, Rachel and her husband were told their child might not survive. Despite the devastating prognosis, they refused to give up, navigating a complex medical journey that transformed their family's life. Their daughter now lives with significant medical needs, requiring a tracheostomy and ventilator support, which initially seemed overwhelming to Rachel. What makes Rachel's story remarkable is her determination to maintain a full, vibrant life despite the intense caregiving responsibilities. Working full-time in marketing while managing her daughter's complex medical care, she and her husband have intentionally preserved their family's sense of normalcy. They continue to be active in their community, host events, and ensure their other children feel supported and engaged. Rachel's approach is characterized by a deep faith and a belief that their current circumstances serve a greater purpose. Her perspective on caregiving is both practical and inspirational. Rachel approaches challenges with low expectations and a remarkable ability to adapt, viewing unexpected changes as opportunities rather than obstacles. She emphasizes the importance of open communication with her spouse, maintaining their relationship through shared goals, and making time for self-care, such as occasional shopping trips or simply enjoying a quiet meal. Her story illustrates that while caregiving can be incredibly demanding, it doesn't have to consume or define one's entire existence. Thank you to our sponsor: CareScout Learn more about Confessions of a Reluctant Caregiver: https://www.confessionsofareluctantcaregiver.com/ ** Caregiver Action Network 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.** 🔔 Don’t forget to like, subscribe, and share for more real stories from the frontlines of caregiving. Support the show Confessions of a Reluctant Caregiver Sisterhood of Care, LLC Website: www.confessionsofareluctantcaregiver.com Like us on Facebook! Tweet with us on Twitter! Follow us on Instagram! Watch us on Youtube! Pin us on Pinterest! Link us on LinkedIn! Tune in on Whole Care Network

We’re getting back to the basics of hospice with Hospice Social Worker Lisa Pahl, sharing information about transfers from one hospice agency to another. It’s really important for patients and their decision makers to know they can transfer to another hospice agency if the care isn’t a good fit. Hospice team members should be knowledgeable about how transfers work and what needs to be done.   Here are some things you need to know about transfers: • The patient or decision maker has the right to request a transfer to another hospice agency. • There are several reasons a transfer might happen, including being dissatisfied with the care, personality clashes with the hospice interdisciplinary team, or wanting to be cared for by a friend working for another company. • When the patient or decision maker requests a transfer, the current agency is required to coordinate the transfer with the new agency. • The current agency should provide a report of the care being provided, including the plan of care, list of medications, and a discharge summary. • Transfers are allowed only once during a benefit (certification) period. The current agency should make that information available to the patient and caregiver.   Connect with Lisa Pahl, owner/creator (thedeathdeck.com) The Death Deck and End of Life Deck   You can find the Approaching Death Support Kit at bkbooks.com. Find all of Barbara Karnes’ products and resources at bkbooks.com. Read Barbara’s blog at bkbooks.com. Connect with Barbara Karnes on Facebook IG LinkedIn Twitter (X)  YouTube Hospice Navigation Services understands that you need unbiased, expert support to have the best end of life experience possible.  If you have questions about hospice care for yourself or someone you care about, Hospice Navigation Services can help. Whether you want to connect by phone or video, you can book a FREE 30-Minute Hospice Navigation Session, or a more in-depth 60-Minute Navigation Session for $95. If you need to troubleshoot the care you’re already receiving, we’re here to answer your questions. A 60-Minute Navigation Session by video call allows up to 3 family members to get the same expert information at the same time. We believe you deserve to have good hospice care. Book your session with an expert Hospice Navigator at theheartofhospice.com.   Connect with The Heart of Hospice Podcast and host Helen Bauer Website: theheartofhospice.com Social media: Facebook  Twitter  Instagram LinkedIn

Do you wish you could get a good night’s sleep? We do too! We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we appreciate the insights Dr. Glenna Brewster, PhD, RN, FNP-BC, Assistant Professor at Nell Hodgson Woodruff School of Nursing at Emory University, shared for all of us about her sleep study titled SLEEPMATE, and how we can all create good sleep habits. Dr. Glenna Brewster’s background is impressive, and her passion for good sleep is inspiring! In addition to her responsibilities as a professor, she is a nurse scientist, family nurse practitioner, and she leads the Emory University Mind at Rest research team, which develops and tests practical, evidence-based programs to reduce sleep problems and improve health outcomes for people living with memory loss or dementia and their caregivers. Good sleep isn’t just for your care receiver, this is for you too! According to Dr. Brewster: Sleep problems, especially if you’re a caregiver or person living with cognitive impairment, are significant. You might have a hard time falling asleep, wake up multiple times during the night, or notice that as the disease progresses there is daytime sleepiness. Sleep disturbances are prevalent both in care partners or caregivers and people living with cognitive impairment. Dr. Brewster has developed the SLEEPMATE study for caregivers and people living with cognitive impairment and types of dementia. It’s a six-week virtual intervention where you participate together. The study examines whether the intervention is feasible, acceptable, and if it improves sleep outcomes. At the end of this blog post is the link you can use if you’re interested in participating in this virtual study. This topic is incredibly valuable for us as caregivers. We’ve learned the need for quality sleep — and what not having it is like. We’ve also learned that we’re often so focused on quality sleep for our care receiver, we don’t prioritize our own sleep as caregivers! One important take-away from Dr. Brewster for caregivers it’s so easy not to consider — or to lose sight of: Your quality of sleep is every bit as important — and sometimes even more — important than your care receiver’s. Full Show Notes here Additional Resources Mentioned Dr. Glenna Brewster, assistant professor, shares her innovative study designed to improve the sleep outcomes of persons living with preclinical and early-stage dementia and their caregivers. Brewster is also founder of the Mind at Rest research lab.For more information about joining this study, visit mindatrest.org/contact/.Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney Takeaways Tip 1: Practice Good Sleep Hygiene Tip 2: Limit Daytime Naps Tip 3: Make Your Bedroom Like a Cave Tip 4: Schedule Worry Time Earlier in the Day Tip 5: Keep Your Bedroom for the Three S's About the SLEEP-MATE Study Dr. Brewster's study is recruiting pairs. The person who is receiving the care doesn't have to be diagnosed with dementia, just have a complaint or an experience of cognitive changes. Caregivers or care partners—different people want to be called different things based on where in the dementia journey they are—both people participating, both having some type of sleep disturbance or sleep problems. That could be difficulty falling asleep, difficulty staying asleep (meaning that you fall asleep and then you wake up, and when you wake up, you have a hard time falling back asleep), or significant daytime sleepiness or some other type of impairment during the day. It's for people who are living within the contiguous US. Each of you gets an honorarium for participating as a thank you for your time and investment in participating in the study. If you have any questions or want to find out more about the study, please reach out at 404-712-9164 or you can check out their lab's website at www.mindatrest.org.

In this episode of I Saved You. Now, Do the Dishes Podcast, Carrie Severson shares the moment she realized they'd fallen through the cracks. Despite all the check-ins, appointments, and protocols, Carrie learned—after Gavin was nearly finished with his cancer treatment plan, including several rounds of chemotherapy—that he was never even scheduled to see an oncology nurse. That same day, his essential medication was sent to the wrong pharmacy during one of the most critical and fragile points in his care. This episode is a raw look at the administrative breakdowns that can define the caregiver experience, and what it's really like to become the coordinator, advocate, and emotional anchor all at once. This episode reflects on the purpose of I Saved You. Now, Do the Dishes podcast and Carrie share more tips for caregiving from her experience and invite listeners to share their thoughts. As this season of the show is coming to a close, she hopes to continue providing caregiver support for family caregivers when season two picks up in the fall! If you're a family caregiver, reach out to Carrie at www.carrieseverson.com or follow at https://www.instagram.com/authorcarrieseverson/.

magine stepping into a marriage knowing you're immediately going to become a full-time caregiver. That was Hope Cross's reality when her husband, Steve, was diagnosed with ALS while they were dating. For nine years, she cared for him up until his passing, and it was a journey filled with love, challenges, and deep emotions. Hope has openly shared the raw and unfiltered sides of caregiving, offering a rare glimpse into the realities many face, but sometimes don't discuss. In this episode, Hope shares how she navigated life after loss, rediscovering herself and ultimately launching a therapy practice focusing on family caregiving, trauma, PTSD, grief and anxiety. We also explore the powerful role of art, nature, friendships, writing, and even our own noses in the healing process. Show notes with product and resource links: https://bit.ly/HHCPod207 Receive the podcast in your email here: http://bit.ly/2G4qvBv Order a copy of Elizabeth's book Just for You: a Daily Self Care Journal: http://bit.ly/HHCjournal For podcast sponsorship opportunities contact Elizabeth: https://happyhealthycaregiver.com/contact-us/ The Happy Healthy Caregiver podcast is part of the Whole Care Network. Rate and Review the podcast: https://bit.ly/HHCPODREVIEW

This podcast brought together two remarkable friends—Peter Berry and Deb Bunt—for a conversation that was as inspiring as it was deeply honest. Hosted by Marianne Sciucco and Christy Byrne Yates, the discussion explored not only the personal journeys and books of Peter and Deb, but also the profound insights they’ve gained into living well with dementia. Peter's journey began with a diagnosis of early-onset Alzheimer’s at the age of 50. As a successful business owner, he was shocked—and initially devastated—by the news. He shares openly about the dark period following his diagnosis, describing it as “a year of hell,” marked by depression and even suicide attempts. What’s remarkable, though, is how Peter transformed that despair into a renewed sense of purpose. Inspired by both his own experience and his father’s long journey with Alzheimer’s, Peter resolved to become a source of hope and understanding for others facing similar challenges. Enter Deb Bunt, Peter’s cycling buddy-turned-co-author and close friend. Their relationship is a beautiful demonstration of how support doesn’t just flow one way. As Deb and Peter describe it, they each bring unique strengths to the friendship: Deb provides companionship and boundless camaraderie, while Peter offers technical know-how and navigational skills. Together, they reinforce the idea that living well with dementia is as much about mutual support and meaning as it is about medical care. This mutuality spills into their advocacy efforts—travelling throughout the UK, speaking at events, and writing books together. Their creative journey produced two books so far: Slow Puncture, a memoir of Peter’s life post-diagnosis, and Walk With Me: Musings Through the Dementia Fog, a collection of Peter’s raw and poetic reflections. Deb explained how Peter’s poetic descriptions became the muse for her own long-harbored ambitions to write, and how collecting Peter’s texts and turning them into a book gave both of them a sense of validation and purpose. These works don’t just recount Peter’s experiences; they offer a window into his emotional landscape—with metaphors that make the inexplicable aspects of dementia relatable. For Peter, cycling is like “a balloon that takes me high into the sky”—a momentary escape from the limitations of his diagnosis. Read their books: Slow PunctureWalk With Me Watch “The Restaurant That Makes Mistakes”  About the Podcast AlzAuthors is the global community of authors writing about Alzheimer’s and dementia from personal experience to light the way for others. Our podcast introduces you to our authors who share their stories and insights to provide knowledge, comfort, and support. Please subscribe so you don’t miss a word. If our authors’ stories move you, please leave a review. And don’t forget to share our podcast with family and friends on their own dementia journeys. We are a 501(c)(3) charitable organization totally reliant on donations to do what we do. Your generosity will help cover our many operating costs, which include website hosting and maintenance fees, service charges to keep things running smoothly, and marketing expenses to promote our authors, expand our content, improve our reach, and more. Our ongoing work supports our mission to lift the silence and stigma of Alzheimer’s and other dementias. To sustain our efforts please donate here. Ideas and opinions expressed in this podcast belong to the speakers and not AlzAuthors. Always consult your healthcare provider and legal and financial consultants for advice on any of the topics covered here. Thanks for listening. We are a Whole Care Network Featured Podcast Proud to be on The Health Podcast Network Find us on The World Podcast Network and babyboomer.org Want to be on the podcast? Here’s what you need to know We’ve got merch! Shop our Store

In today’s episode of A Time to Care: The Caregivers Podcast, we sit down with Brian Lerch, a seasoned executive in healthcare who works at a rehabilitation hospital that supports individuals recovering from traumatic events—such as car accidents or major strokes. Brian shares valuable insights into the journey of rehabilitation, where the goal is not just physical recovery but also emotional and mental transformation. Patients at his facility participate in three hours of therapy a day, focusing on regaining the ability to perform daily tasks. But the journey doesn’t stop there. A crucial part of healing, he explains, is working on one’s mindset—regardless of whether the outcome is returning to independent living or transitioning into hospice care. He emphasizes the importance of accepting change, embracing the good that remains, and learning to appreciate the present. According to Brian, healing includes discovering new sources of joy—like trying a hobby or exercising in ways that weren't part of your routine before. These activities not only help people cope with their new reality but also allow them to explore aspects of themselves they may have never known. Brian reminds us that it's okay to feel uncomfortable when trying something new. In fact, feeling “bad at something” is the first step toward eventually becoming good at it. Whether it’s painting, yoga, or simply walking again—small efforts can lead to big emotional wins. He also discusses how some people naturally possess a positive mindset, while others may struggle. For caregivers and family members, he advises practicing empathy by putting yourself in your loved one’s shoes and highlights how a strong support system can make a world of difference—for the person in recovery and for those supporting them. This episode is a heartfelt reminder that recovery is not just about returning to the past—it’s about rewriting your story with hope, patience, and new possibilities. Tune in, reflect, and share this with someone who needs encouragement in their caregiving or healing journey. To get in touch with Brian Lerch: linkedin.com/in/brianlerch about.me/brianlerch brianl1@live.com

Elder law attorney Patrick Cawley is equipping dementia caregivers with the essential tools they need for estate planning, including advance care planning for end of life. Patrick guides family members as they navigate the health care system and complicated ways to pay for long-term care for their loved one. He is a certified dementia care consultant, and host of the Dementia Empowered podcast.  Patrick has lived experience with a family member who has Frontotemporal Dementia (FTD), so he knows firsthand what dementia caregivers face. Here are some highlights from this episode: Patrick endorses trying care solutions before going straight to legal solutions which might escalate problems and family dynamics. The biggest challenges for dementia caregivers that Patrick sees are financial issues, forming a care team, and complicated or discordant family dynamics.Patrick advocates for caregivers to be paid in certain situations, depending on estate taxes and the financial burden on the caregivers. Recording keeping is vitally important; Patrick recommends keeping a paper trail of transactions and healthcare decisions.  Listen to the Dementia Empowered Podcast here. Connect with Keystone Elder Law here. Connect with Patrick Cawley on LI Find an Elder Law Attorney in your area at naela.org You can find the Approaching Death Support Kit at bkbooks.com. Find all of Barbara Karnes’ products and resources at bkbooks.com. Read Barbara’s blog at bkbooks.com. Connect with Barbara Karnes on Facebook IG LinkedIn Twitter (X)  YouTube Hospice Navigation Services understands that you need unbiased, expert support to have the best end of life experience possible.  If you have questions about hospice care for yourself or someone you care about, Hospice Navigation Services can help. Whether you want to connect by phone or video, you can book a FREE 30-Minute Hospice Navigation Session, or a more in-depth 60-Minute Navigation Session for $95. If you need to troubleshoot the care you’re already receiving, we’re here to answer your questions. A 60-Minute Navigation Session by video call allows up to 3 family members to get the same expert information at the same time. We believe you deserve to have good hospice care. Book your session with an expert Hospice Navigator at theheartofhospice.com.   Connect with The Heart of Hospice Podcast and host Helen Bauer Website: theheartofhospice.com Social media: Facebook  Twitter  Instagram LinkedIn

"When it comes to caregiving, the assumption about being able to take what we've learned and just naturally grow is not always going to be true." How do you think you would feel if you were caregiving for a second or third person living with dementia? Would you feel more prepared because of your previous experience? If you answered "yes," you might be surprised by what research is revealing about experienced caregivers. We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer's and other types of dementia, both of us have been caregivers more than once, and we recently learned about enlightening research from Dr. Emily Mroz, a researcher at Emory University's School of Nursing who coined the phrase "experienced caregiver." Her research is shedding light on a common phenomenon that affects millions of families: providing dementia care for multiple loved ones throughout adulthood. Dr. Mroz is a tenure-track assistant professor and social behavioral scientist who studies how people think, feel, and act within their social and personal situations. With training in developmental psychology, gerontology, geriatrics, and public health, she uses her multidisciplinary perspective to develop resources and interventions that support people living with serious illness, family caregivers, and those who are bereaved. Through her research and interviews with caregivers, Dr. Mroz has identified crucial insights about experienced caregivers that challenge common assumptions and offer practical guidance for those stepping into the caregiving role again. Full Show Notes https://thecaregiversjourney.org/37-studying-experienced-caregivers-four-essential-tips-alzheimers-and-other-dementias/ Additional Resources Mentioned Dr. Emily Mroz, assistant professor and social-behavioral scientist, discusses her research on improving how patients and caregivers navigate serious illnesses such as dementia, end-of-life care and bereavement. Link to study flyer here To join this study, visit survey.qualtrics.emory.edu/jfe/form/SV_cYfshxWcThSSV5s.Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney Takeaways Tip 1: Avoid Assumptions About Who Is Prepared to Be a Dementia Caregiver Tip 2: Assess How Prepared You Really Feel Tip 3: Don't Hesitate to Get Involved in Skills Training and Support Groups Tip 4: Share Your Stories with Grace, Not Judgment The Importance of Research for Experienced Caregivers Dr. Mroz's study is part of a growing recognition that experienced caregivers represent a significant population with unique needs and strengths. Her virtual research study involves participants completing surveys about their caregiving experiences and sharing their stories to help researchers understand the differences between new and experienced caregivers. Study details: Focuses on people currently in active caregiving roles, including those early in their journey with a second or third care recipientParticipants receive a $50 gift card honorariumSessions are conducted virtually and take about one to two hoursCan participate alongside other dementia caregiver research studiesResearch is crucial for developing resources specifically tailored to experienced caregivers Read More in This Blog here

In this deeply personal podcast episode of, I Saved You. Now, Do the Dishes, I share the raw, nerve-wracking experience of bringing my husband home from the long-term cancer wing before I was ready. He wanted out of the hospital, but I wasn't prepared for everything I had to do for him. I shared my anxiety with the internal medicine department in hopes that they would keep him longer, but the team saw no reason to keep him, despite my pleas and the visible reality of our situation. My concerns were brushed off as caregiver overwhelm and I was advised to bring in an at-home nurse to help me with feedings, cleanings, and the drugs. I got a quick tutorial of how to feed my husband through his feeding tube by hand every three to four hours, a box of formula, a box of syringes and a vial of anti-anxiety prescription I had to give him before radiation every day. This is the reality of caregiving in crisis and what it takes to keep going when you are given more than you know what to do with and even more questions. If you're a family caregiver, reach out to me at www.carrieseverson.com or follow me at https://www.instagram.com/authorcarrieseverson/. #caregiver #caregiverburnout #marriage #cancer #mentalhealth #cancertreatment

On-call, after hours, 24/7 services - no matter what you call it, hospice care is available to patients and caregivers every hour of every day. Regardless of the day of the week, whether it’s a holiday, or the office is closed, a member of the hospice team is accessible all the time. Some hospice agencies have answering services or triage teams, but the final result of a call is connection with a nurse. If another discipline is needed, that’s going to be coordinated by the agency. No question or concern is dumb. Hospice agencies offer this service to make sure patients and caregivers feel comfortable in their homes while experiencing the end of a life.  Here are some of the reasons a caregiver or patient might want to contact the hospice team when the office is closed. The patient has had a change in condition, and is showing different symptoms.Your person (the patient) has died. There’s a question about medications. A piece of critical equipment isn’t working (oxygen, BiPap, electric hospital bed, air mattress or overlay).There are spiritual or faith needs, and the chaplain’s (or social worker’s) support is needed.  The patient has had a fall and there’s an injury.  You can find the Approaching Death Support Kit at bkbooks.com. Find all of Barbara Karnes’ products and resources at bkbooks.com. Read Barbara’s blog at bkbooks.com. Connect with Barbara Karnes on Facebook IG LinkedIn Twitter (X)  YouTube Hospice Navigation Services understands that you need unbiased, expert support to have the best end of life experience possible.  If you have questions about hospice care for yourself or someone you care about, Hospice Navigation Services can help. Whether you want to connect by phone or video, you can book a FREE 30-Minute Hospice Navigation Session, or a more in-depth 60-Minute Navigation Session for $95. If you need to troubleshoot the care you’re already receiving, we’re here to answer your questions. A 60-Minute Navigation Session by video call allows up to 3 family members to get the same expert information at the same time. We believe you deserve to have good hospice care. Book your session with an expert Hospice Navigator at theheartofhospice.com.   Connect with The Heart of Hospice Podcast and host Helen Bauer Website: theheartofhospice.com Social media: Facebook  Twitter  Instagram LinkedIn Email: helen@theheartofhospice.com Book podcast host Helen Bauer to speak at your event or conference by sending an email to helen@theheartofhospice.com. Find more podcast episodes from The Heart of Hospice at The Heart of Hospice Podcast (theheartofhospice.com)

 In this inspiring episode of A Time to Care: The Caregivers Podcast, we sit down with Alara Rosenberg, a retirement coach who helps individuals navigate the emotional and practical transition into post-career life. Alara shares that one of the most essential steps in this phase is taking the time to reflect on key questions: Who are you now? What do you want to do? Who do you want to become? She emphasizes the importance of social connection, encouraging retirees to build meaningful relationships and embrace the freedom to explore new interests. Retirement, she reminds us, is not a fixed destination—it’s a journey of self-discovery where everyone’s path is different. Alara invites retiree listeners to experiment with new hobbies, seek out fresh friendships, and pursue long-forgotten passions. This stage of life is a unique opportunity to realign with your values and find joy in new experiences. She leaves us with three powerful pieces of advice: Take intentional time to plan your retirement journey.Identify your new values, goals, and priorities.Take care of your brain and body to maintain vitality and good health. Tune in to be inspired and to rethink retirement not as an end, but as a new beginning filled with possibility.