Boundaries in Caregiving with Loren Gelberg-Goff

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