Starting Out in the End: Talking With Barbara Karnes

Licensed funeral director and End of Life Doula Christa Ovenell is busting myths about funerals, and sharing practical tips on how to plan a funeral service that reflects your values and needs. As a community-based Death Educator, Christa is the founder of Death’s Apprentice Education & Planning Inc., a company that specializes in holistic advance care planning for individuals and forward-thinking companies. Christa leads with her heart when it comes to guiding clients through death and funeral planning. She’s also a great resource for funeral planning, making arrangements after a death to create a meaningful service, and having bold conversations about death and dying to help all of us get more comfortable with our mortality. Connect with EOL Doula and Funeral Director Christa Ovenell Website: deathsapprentice.ca Email: [email protected] Instagram: deathsapprentice.ca Interested in purchasing a GrandPad to stay connected with a senior loved one? Get more information at https://www.grandpad.net/thoh. GrandPad website: https://www.grandpad.net/ Social Media for GrandPad https://facebook.com/grandpad https://instagram.com/grandpad_social/ https://www.linkedin.com/company/grandpad https://www.youtube.com/channel/UCuFAJCb7_tTneM_ikABq08Q Hospice Navigation Services is here for you. If you have questions about hospice care or need to troubleshoot the care you’re already receiving, book a session with an expert Hospice Navigator at theheartofhospice.com. Connect with The Heart of Hospice Podcast and host Helen Bauer Website: theheartofhospice.com Email: [email protected] More podcast episodes: The Heart of Hospice Podcast

Barbara Drake-Vera’s caregiving journey in Peru, caring for her American father with Alzheimer's, is a unique and eye-opening story that sheds light on cultural differences in elder care. While Barbara lived in Lima, Peru with her Peruvian husband, her widowed father was diagnosed with Alzheimer’s. He lived in a four-bedroom home he previously shared with his late wife in Florida, USA, and it was soon determined he could not live alone at home. As the only child, Barbara felt compelled to come to his assistance. She knew that elder care was manageable and affordable in Lima, where multigenerational families living together was the norm. So, she and her husband made the unconventional decision to move her dad to Peru to be cared for in their home. This was a radical change for him, a proud and independent American man, World War II veteran, and former postal worker in his eighties. Together, they navigated the cultural nuances of caregiving within a Latin community that, in spite of their challenges, led to success. Barbara, the author of Melted Away: A Memoir of Climate Change and Caregiving in Peru,had had a difficult relationship with her father for many years, but this caregiving journey helped heal old wounds. Quotes “Caring for someone with dementia can be a real gift, but you don't think of it at the time because you're just trying to get through each day.” - Barbara Drake-Vera “I decided to be compassionate. It wasn't forgiveness, but I chose not to let the past be my present.” - Barbara Drake-Vera “My father, who was a self-absorbed, narcissistic jerk, was never such a nice person as when he was finally treated for Alzheimer's and cared for in Peru.” - Barbara Drake-Vera In this episode, you will: Explore the impact of cultural differences in elder care and learn how diverse perspectives can enrich the caregiving experience for individuals with Alzheimer's. Discover the benefits of multigenerational living for Alzheimer's caregiving and how it can positively influence the well-being of both the individual with Alzheimer's and the caregivers. Learn effective strategies for transitioning elders with Alzheimer's to new environments and understand the importance of creating a supportive and familiar space for them. After the podcast Purchase Melted Away: A Memoir of Climate Change and Caregiving in Peru Note: We are an Amazon Associate and may receive a small commission from book sales. Learn more about Barbara Drake-Vera 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

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.

Marty Schreiber has dedicated his life to advocating for Alzheimer's patients and their caregivers. As the former governor of Wisconsin and author of the acclaimed memoir "My Two Elaine's", Marty draws from his own deeply personal experience as a caregiver for his wife of 61 years, Elaine. For eight years, Marty cared for Elaine in their home as her Alzheimer's progressed, but he now admits he was unprepared for the physical and emotional toll it would take. Marty candidly shares his struggles, from trying to keep Elaine in his world to nearly working himself to exhaustion. He also opens up about difficult decisions like placing Elaine in assisted living and the guilt he still feels over not supporting his children through the process. However, Marty channels his regrets into wisdom, urging caregivers to accept help, join their loved one's reality, and focus on living fully themselves to best support their person. Through humor, heartache, and hard-won insight, he offers invaluable insights aimed at aiding fellow caregivers to embrace support, understand the dual realities of their loved ones, and nurture their own well-being for more effective care. About Marty: Former Wisconsin Gov. Martin J. Schreiber is an award-winning crusader for Alzheimer’s caregivers and persons with dementia. Reaching audiences nationwide at live events and through various forms of media, Marty uses humor and compassion as he shares lessons from his ongoing, decade-plus journey as a caregiver. His speaking tour takes him to conferences, civic organizations, senior communities, libraries, and more around the country. He has given more than 300 presentations since launching his awareness campaign in late 2016. Whether in Texas, Idaho, New York, Missouri, Florida, Ohio, or closer to home, caregivers tell Marty that his message encourages them and hope that they can manage their challenging situation. Marty’s book, My Two Elaines: Learning, Coping, and Surviving as an Alzheimer’s Caregiver, is winning acclaim from caregivers across the country. It was rated as the No. 11 “Best Alzheimer’s Book of All Time” by bookauthority.org and was named to Caring.com’s list of “Best Caregiving Books” of both 2017 and 2018. 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

Holiday survival tips for caregivers!. The holidays are a time for joy, but for families caring for someone with Alzheimer's or dementia, they can be a source of stress and anxiety. Don't let the pressures of the season overwhelm you. In this episode, we offer essential tips to help you navigate the holidays with grace and resilience. Discover practical strategies for creating a calm environment, managing challenging behaviors, and involving your loved one in meaningful activities. We'll also share advice on setting realistic expectations, seeking support, and prioritizing self-care. Remember, you're not alone. By implementing these holiday survival tips and tuning into the entire episode, you can create a more peaceful and enjoyable holiday season for everyone involved. We'll cover topics like: Creating a soothing holiday atmosphere Managing challenging behaviors Involving your loved one in meaningful activities Setting realistic expectations Seeking support from family and friends Self-care tips for caregivers

As caregivers for our loved ones with Alzheimer’s and other types of dementia, we often struggle with adapting activities to their changing abilities. Through our experiences, and what we’ve learned from others on their caregiving journeys, Nancy Treaster and I developed three important tips to help you create meaningful engagement that honors who our care receivers are today. Connect with us and share your tips: Website: https://www.thecaregiversjourney.com Instagram: https://www.instagram.com/thecaregiversjourney/ Facebook: https://www.facebook.com/TheCaregiversJourneys/ Linkedin: https://www.linkedin.com/in/suearmstrongryan/, https://www.linkedin.com/in/nancytreaster/ Email: [email protected], [email protected] Additional Resources Mentioned Other The Caregiver’s Journey podcast mentioned Home Safety here These resources contain affiliate links so we may receive a small commission for purchases made at no additional cost to you. Large plastic rings child's toy that center screws into base here Adult coloring book here Dementia friendly puzzle here Lavender lotion here Bead maze here Fidget blanket here Photo gifts Shutterfly here Memory Cafe example here Takeaways From the moment of diagnosis, we need to shift our focus from what our care receivers used to do to what brings them joy now. Tip 1: Adjust Our Expectations Our care receivers’ engagement and abilities change throughout their journey — even throughout each day. Key points: Let go of ‘before’ comparisons Let go of outcomes Watch for signs of enjoyment or frustration Pay attention to new interests Adapt activities to current abilities Accept different ways of engaging Tip 2: Prioritize Their Safety As we introduce or adapt activities, safety must be a primary concern, considering both cognitive and physical abilities. Key points: Consider vision changes and depth perception challenges Adapt activities to safely maintain independence Provide appropriate supervision and get creative in places to find it Make creative adjustments to familiar activities Create support networks for safety Tip 3: Create Engaging Activities Create activities to reflect their personal history, career, hobbies and interests, while engaging their senses. Whenever possible, engage multiple senses for a deeper connection and engagement. Key points: Engage their senses: • Touch (e.g.: fidget blankets, textured items) • Sound (e.g.: familiar music, calming sounds) • Smell (e.g.: familiar scents, cooking aromas) • Sight (e.g.: colorful objects, family photos) • Movement (e.g.: seated dancing, simple exercises) Create social connections through: • Small group activities • Religious or spiritual practices • Memory cafes • Senior center programs • Family gatherings When planning activities: Observe body language for signs of engagement or distress Have backup calming activities ready if they get agitated Remember that watching can be a form of participation Consider “drip grief” (see bottom of post for definition) — both yours and theirs Be flexible and creative in your approach Accept help from others who want to support you Read Full Blog here

Gradual changes in children and the elderly often go unnoticed, but when a noticeable shift occurs in an elderly loved one, it can lead to the need for challenging conversations. These moments can be delicate, whether you're the one initiating the conversation or on the receiving end of it. If you're the one starting the conversation, take time to understand the perspective of those you're speaking with. People generally mean well and want what’s best for their loved one, even if their words or actions seem hurtful. Avoid taking things personally, and focus on the shared goal of caring for your loved one. If you're on the receiving end, pause before reacting. Listen carefully, even if the feedback feels difficult to hear, and let go of any unnecessary emotional baggage. If the message isn’t clear, ask thoughtful questions for clarification. If you find yourself becoming upset, step away to cool down and revisit the topic later with a calm and open mind. By approaching these conversations with empathy, patience, and understanding, you can turn them into opportunities for deeper connection and better care for your loved ones.

Allison Applebaum stood by her dad Stanley as his caregiving partner, respecting his wishes and maintaining his quality of life through the very end of his life. Allison was previously the Founding Director of the Caregivers Clinic at Memorial Sloan Kettering Cancer Center, the first program of its kind in the United States to provide comprehensive psychosocial care to family members and friends of patients who are in the caregiving role. Her father Stanley, a talented and prolific composer and musician, worked with many great artists for the 50’s and 60’s, including Neil Sedaka, Ben E. King, and Connie Francis. Allison took a lead role as her dad’s caregiver after the death of her mother, helping him deal with Lewy Body Disease (Lewy Body Dementia). After her mother died, Allison and Stan went forward, dealing with intense and traumatic grief. Allison’s caregiving story is a beautiful tribute to her dad, and there are many caregivers across the U.S. doing the same job for someone they care about. LBD carries an unusual set of caregiving challenges. Stan defined quality of life as the ability to be creative, grow, and continue to compose his music. As a caregiver, Allison respected his wishes and ensured he lived fully until his death at 96. Some highlights from Allison’s unique caregiving story include: Her dad retained his creativity and this contributed greatly to his quality of life Stan never had a DNR (Do Not Rescucitate) document, and Allison respected that wish through his death Intermittent hallucinations were part of his disease, a great source of pain for both Stan and his daughter. Allison considered them partners in caregiving, and worked to build a caregiving village customized to her dad’s needs. Connect with Dr. Allison Applebaum: Website: allisonapplebaum.com Book: Stand By Me: A Guide to Navigating Modern, Meaningful Caregiving Socials: Twitter Instagram Interested in purchasing a GrandPad to stay connected with a senior loved one? Get more information at https://www.grandpad.net/thoh. GrandPad website: https://www.grandpad.net/ Social Media for GrandPad https://facebook.com/grandpad https://instagram.com/grandpad_social/ https://www.linkedin.com/company/grandpad https://www.youtube.com/channel/UCuFAJCb7_tTneM_ikABq08Q Hospice Navigation Services is here for you. If you have questions about hospice care or need to troubleshoot the care you’re already receiving, book a session with an expert Hospice Navigator at theheartofhospice.com. Connect with The Heart of Hospice Podcast and host Helen Bauer Website: theheartofhospice.com Email: [email protected] More podcast episodes: The Heart of Hospice Podcast

After struggling with the demands of caring for her aging mother, Paige Wilson made a bold move, leaving her corporate career and becoming an entrepreneur with a big idea to help family caregivers. In this episode of the Happy Healthy Caregiver podcast, we learn about her disruptive care solution that utilizes technology to harness the strength of community. We also discuss normalizing asking for help, the longevity economy, downsizing possessions, and the self-care comfort of a McDonald’s diet coke. Show notes with product and resource links: https://bit.ly/HHCPod195 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

Susan Combs will tell you she had a great dad. Her caregiving experience at the end of his life inspired her to give back to the veteran community. Susan’s dad Major General Roger E. Combs was a huge influence on her life. Roger battled with throat cancer related to Agent Orange for ten years, eventually dealing with a feeding tube toward the end of his life. A simple act - his request to eat pancakes - launched a non-profit organization that supports military veterans. Susan is the president of Combs and Company, based in New York City. Her movement Pancakes for Roger occurs every February. For every pancake-loving picture posted on social media post using the hashtag #PancakesForRoger, Combs & Company will make a donation to the University of Missouri School of Law Veterans Clinic which helps veterans and their families navigate the VA claims process and secure disability benefits when they are faced with obstacles along the way. Here’s some advice Susan gives to other end of life caregivers: Do one thing every day for yourself Bring in your “crew”, those friends who can support you Have the advance care plan conversations, even though it’s difficult Connect with Susan Combs and Pancakes for Roger: Website: pancakesforroger.org Book: Pancakes for Roger Social media: Instagram Facebook Twitter (X) YouTube Honor your veteran on their Wall of Honor: Interested in purchasing a GrandPad to stay connected with a senior loved one? Get more information at https://www.grandpad.net/thoh. GrandPad website: https://www.grandpad.net/ Social Media for GrandPad https://facebook.com/grandpad https://instagram.com/grandpad_social/ https://www.linkedin.com/company/grandpad https://www.youtube.com/channel/UCuFAJCb7_tTneM_ikABq08Q Hospice Navigation Services is here for you. If you have questions about hospice care or need to troubleshoot the care you’re already receiving, book a session with an expert Hospice Navigator at theheartofhospice.com. Connect with The Heart of Hospice Podcast and host Helen Bauer Website: theheartofhospice.com Email: [email protected] More podcast episodes: The Heart of Hospice Podcast