Navigating Dementia Caregiving Roadmap: Messy Middle Steps 11-17 / Alzheimer’s and Other Dementias

Have you moved beyond the initial steps of your caregiving journey and now find yourself needing to take more control while your loved one still believes they can do most things independently? Are you noticing that simple tasks are becoming increasingly challenging for them, yet they resist your help? You’re not alone! You’ve entered what we call the “messy middle” stage of your caregiving journey. We created for you the comprehensive, 20-step caregiving journey roadmap guide, Navigating Dementia Caregiving Roadmap Connect with us and share your tips: Website: https://thecaregiversjourney.org/Donate: https://give.cornerstone.cc/thecaregiversjourneyInstagram: 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] Full Show Notes Additional Resources Mentioned Messy Middle First Steps - You recognize it’s time to assert more control  11. Focus on safety.  Listen to these podcasts or read these blogs.Home Alone - Hear about the deal breakers for living home alone:21 minute TCJ podcast: 6. Home AloneTCJ blog: 6. Home Alone.Medication - Understand strategies to safely manage medication:20 minute TCJ podcast: 20. Medication ManagementTCJ blog: 20. Medication Management.Home Safety - Find approaches to the basics of home safety:25 minute TCJ podcast: 7. Home Safety TCJ blog: 7. Home SafetyWandering - Learn ways to manage three types of wandering: outside, inside and during the night.20 minute TCJ podcast: 4. Wandering TCJ blog: 4. Wandering. 12. Continue to prioritize your self-care.  Understand how to approach the realities of self-care:23 minute TCJ podcast: 27. The Realities of Caregiver Self-CareTCJ blog: 27. The Reality of Caregiver Self-Care. 13. Educate yourself on activities of daily living (ADLs). Prepare for changes in your loved ones ability to manage their ADLs.Listen to these podcasts or read these blogs on activities of daily living:26 minute TCJ podcast: 9. Preparing for Incontinence TCJ blog: 9. Preparing for Incontinence21 minute TCJ podcast: 14. Bathing and DressingTCJ blog: 14. Bathing and Dressing21 minute TCJ podcast: 15. Personal Care e.g. brushing teeth, trimming hair TCJ blog: 15. Personal Care21 minute TCJ podcast: 16. Eating and Drinking TCJ blog: 16. Eating and Drinking. 14.Create a Care Plan - at minimum a Family Emergency Plan. 25 minute TCJ podcast: 33. How to Create a Care Plan TCJ blog: 33. Creating a Care Plan. Messy Middle - Continued Second Steps - It’s time for more support 15. Start or increase leveraging dementia/adult day programs.  Community resource finder: Select Community Services and choose Adult Day Centers for your search. 16. Start thinking about professional help. Educate yourself: Evaluate continuing care communities (even if you never plan to use one) just in case.33 minute TCJ podcast: 28. Home and Community Living Options TCJ blog: 28. Home and Community Living Options.Understand the types of paid caregivers:26 minute TCJ podcast: 32. Hiring a Paid Caregiver TCJ blog: 32. Hiring a Paid Caregiver.Find an organization to help. Search online: ‘Senior Care Advisor’ + ‘your area’.Look for options yourself. Go to the Community Resource Finder sponsored by the Alzheimer’s Association and AARP. 17. Continue your education. Take the Savvy Caregiver Advanced training (this can be taken in-person or virtually).Delusions:38 minute TCJ podcast: 23. DelusionsTCJ blog: 23. Delusions.Incontinence:26 minute TCJ podcast: 10. Incontinence Begins TCJ blog: 10. Incontinence Begins. Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney

DNP Elena Prendergast is empowering people with serious illness to find their voices, and advocate for their best quality of life. Working with patients who are dealing with end of life issues showed her how much extra support is needed, even when there’s a healthcare team providing care. Elena helps clients navigate the confusing maze of the US healthcare system. She listens to what they think is important, and equips them with the tools to make their needs and wishes known. Her education as a doctorally prepared nurse practitioner with extensive experience in palliative care, additional training in trauma/resilience, and the sacred work of an end-of-life doula provides a unique perspective of the needs of clients with serious-illness.  If you’re a patient, a caregiver or loved one, or a long-distance caregiver, you can work with Elena at Tree of Life Health Consultant by visiting treeoflifehealthconsultant.com.  Connect with Elena Prendergast, DNP on social media: Facebook  Instagram  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. And we believe you deserve to get good hospice care. 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. 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 Social media: Facebook  Twitter  Instagram LinkedIn Email: [email protected] More podcast episodes: The Heart of Hospice Podcast Podcast host Helen Bauer is a great addition to your event or conference! For speaking inquiries, send an email to [email protected].

Dan Contreras is a U.S. Army veteran, proud husband, and devoted caregiver to his wife, Teresa. After years of service and leadership with DAV (Disabled American Veterans)—including his role as National Commander—Dan has become a strong advocate for both caregivers and care receivers. Like many military spouses and family members, Dan didn’t initially see himself as a “caregiver.” That changed when, as a DAV leader, he sought to better understand the DAV’s Caregiver Support Program by completing the onboarding process. Now, he’s on a mission to raise awareness and provide resources for the 70% of veterans who are caring for loved ones. In this episode of the Happy Healthy Caregiver podcast, Dan shares: The resources DAV offers to support veterans who are also caregiversHow his perspective on self-care has shifted as Teresa’s cancer journey has progressedThe creative outlets he and Teresa enjoy together, including Legos, crafts, and hobbies that bring them joyHow something as simple as a karaoke app helps him relieve stress and recharge Show notes with product and resource links: http://bit.ly/HHCPOD216 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

In this episode of AgingGayfully®, hosts Chris and Josh discuss health updates, personal growth, and the importance of stepping into one's comfort zone. Chris shares his recent experiences with artistic expression and how it has helped him rediscover himself. The conversation reflects on life lessons, regrets, and the significance of using one's talents and skills. Takeaways Life does not stop when we get sick.Stepping into your comfort zone can lead to personal growth.Artistic expression can help rediscover oneself.It's important to use your talents and skills.Reflecting on life can help identify what truly makes you happy.There are no regrets, only lessons learned.Finding the right environment can foster growth.Everyone has a story worth sharing.Engaging with the community can lead to meaningful connections.Happiness often comes from using your innate talents. Share your story or drop a line: [email protected] Like, subscribe, and ring our bell (figuratively or otherwise). Let’s AgeGayfully® together, with intention, humor, and each other. A gay senior, Christopher MacLellan, and an ally, Josh Wilson, podcasting about life, love, liberty and travel. Don’t Say Gay?… Say AgingGayfully®! AgingGayfully® is about living life with dignity in an age-friendly society regardless of orientation or economic status because longevity is a justice issue. AgingGayfully® is about finding your voice as we age. We are all part of the aging process and have real connections in diversity. AgingGayfully® is a modern type of activism that supports the concept of belonging. AgingGayfully® is about Adventure, Leisure, Travel, being a citizen of the world, traveling to destinations, and being part of the global community as we age and prosper in body, mind, and spirit.

Have you completed the first six essential steps of the comprehensive 20-step caregiving journey roadmap guide Navigating Dementia Caregiving: Your Resource Roadmap for Every Stage? Are ready to take on more? Do you find yourself wanting to learn faster and more easily than trying to figure everything out on your own? If you answered ‘Yes’, you’re in the right place for the next phase of the dementia “In the Beginning” journey. We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we’ve learned that building knowledge, and preparing for progression, are crucial for sustainable caregiving. We recently talked with Jenny Gay, licensed clinical social worker with Emory Integrated Memory Care, about our comprehensive 20-step caregiving journey roadmap guide: Navigating Dementia Caregiving Roadmap. In this podcast, we’re sharing steps 7–10. Connect with us and share your tips: Website: https://thecaregiversjourney.org/Donate: https://give.cornerstone.cc/thecaregiversjourneyInstagram: 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] Full Show Notes https://thecaregiversjourney.org/44-navigating-dementia-caregiving-roadmap-in-the-beginning-steps-7-10-alzheimers-and-other-dementias/ Additional Resources Mentioned Navigating Dementia Caregiving Roadmap Guide In the Beginning - continued Next Steps - You are ready for more  7. Continue your education: Take the Savvy Caregiver course in person or online.Read this magazine:  Mayo Clinic Living with dementia: A guide to caregiving and support. Find and take a virtual dementia tour near you. In the United States, in your search engine, type ‘virtual dementia tour’ + ’your state’. For example: ‘virtual dementia tour Florida’ or, outside the US, replace your state with your country. 8. Start planning for the next stage of care. Build your personal support network:21 minute TCJ podcast: 40. Create Your Personal Support NetworkTCJ blog: 40. Create Your Personal Support Network.Find and try a memory cafe (Caregivers and care receivers go together).Investigate dementia day centers (also known as adult day centers that include dementia care programs) for your care receiver. Community resource finder: Select Community Services and choose Adult Day Centers for your search.Ask your loved one’s medical team for a home safety assessment.The goal is to have someone evaluate your home for safety and dementia care needs. This is usually available through palliative care, GUIDE program, or an order from a physician.You can get a free assessment from social services with this order, or you can pay for an independent assessment from a private organization. 9. Investigate your local government community support:  In the US, contact your local Area Agency on Aging. Search for yours at Eldercare.acl.gov or call 1-800-677-1116.Call and set up a screening for eligibility:They will point you to any free government services where you are eligible. Be sure to find out if you are eligible to get paid to be a caregiver.  10. Evaluate driving risks.  Some US states have specific requirements for individuals with dementia to report their diagnosis and potentially undergo driving evaluations. Listen to this podcast or read this blog:21 minute TCJ podcast: 5. Taking Away the KeysTCJ blog: 5. Taking Away the Keys.  Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney Takeaways The Three Stages of the Dementia Caregiving Journey 1. In the Beginning - Your loved one receives a diagnosis.  2. The Messy Middle - You begin asserting control; this is when it gets messy! 3. Later On - You are managing all aspects of their care. 

Palliative physician Emma Jones knows the real effects of burnout, and now she’s coaching others to rise from the ashes. While working in a high-pressure pediatric palliative care job, she found herself suffering the fallout of severe burnout. Emma was told to go home and figure out what was going on, but she realized there was no guide for how to do that. She began dealing with depression, trying to rebuild her self care. The care started with yoga, and grew to include healthy habits including daily movement, therapy, rest, and boundary setting. She calls them “small, radical changes”. Emma wanted to give other people a way out of their own burnout and validate their experiences. Her book The Phoenix Blueprint: Emerging Stronger From The Blaze of Healthcare, shares the skills and practices that have allowed her to emerge stronger from burnout and rediscover her calling to serve patients and colleagues. The Phoenix Blueprint provides a step-by-step guide to help those in healthcare rise like a phoenix from the ashes. Connect with Dr. Emma Jones: LinkedIn Facebook Instagram       Website: emmajonesmd.com Work with Dr. Jones to reclaim your career from burnout. Purchase your copy of The Phoenix Blueprint: Emerging Stronger From The Blaze of Healthcare here. 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. And we believe you deserve to get good hospice care.  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. 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 Social media: Facebook  Twitter  Instagram LinkedIn Email: [email protected] More podcast episodes: The Heart of Hospice Podcast Podcast host Helen Bauer is a great addition to your event or conference! For speaking inquiries, send an email to [email protected].

In this intimate and heartfelt episode of I Saved You. Now Do the Dishes podcast, Carrie sits down with her husband, Gavin—the very person who inspired this podcast after his head and neck cancer diagnosis two years ago. With honesty, humor, and the kind of raw vulnerability that only comes from living through it, they revisit the milestone that changed everything. Carrie and Gavin unpack the days leading up to his diagnosis: a strange lump, escalating worry, and the surreal contrast of preparing to host their very first Thanksgiving while bracing for news that would upend their lives. Carrie shares what it was like to sit in the waiting period of uncertainty. Gavin opens up about hoping—really hoping—that the whole thing was nothing more than a big, stubborn boil. Together, they reflect on how fear, denial, intuition, partnership, and even humor carried them through that chapter. This episode is a testament to resilience, love, and the unseen emotional labor of caregiving and being cared for —spouse style.  If you’ve ever navigated a medical unknown, stood in the tension between hope and fear, or loved someone through a life-altering moment, this conversation is for you.

Dr Shoshana Ungerleider, is a board-certified internal medicine physician, science journalist, and passionate advocate for compassionate end-of-life care.  She hosts and produces TED Health and the NY Radio Award–winning podcast Before We Go, and founded the End Well Foundation to make end of life a part of life. Shoshana regularly appears as a medical expert on CNN, MSNBC, and CBS News, with bylines in TIME, USA Today, Scientific American, and more. She executive produced the Oscar-nominated Netflix film End Game, funded the Emmy-winning Extremis, and produced Robin’s Wish, about the final years of Robin Williams.  In this episode, we explore how popular culture and healthcare meet—how film, media, and storytelling shape the way we see end-of-life, grief, loss, and caregiving—and we’ll hear Shoshana’s story of caring for her father through cancer. From documentaries to news headlines, including EndWell’s part in consulting on HBO’s Emmy winning drama The Pitt, these cultural moments guide how we talk about death, support those we love, and face our own final chapters. TRANSCRIPT with resources Daughterhood

In a conversation that challenges stereotypes and brings to light the unexpected realities of caregiving, this episode reveals the experiences of three men who stepped up to care for their mothers with dementia. It's a heartfelt exploration of grief, growth, and the bonds that are both tested and strengthened through caregiving. Shattering Stereotypes: Men as Caregivers We often associate caregiving with daughters, wives, and sisters, yet over 40% of caregivers are men. Many of them, like guests David Bredbenner, Alfredo Botello, and Vincent Zappacosta, find themselves in this role simply because "there really was no other option." Their stories reveal that caregiving isn’t just a woman’s job—it’s a human one. Vincent shares, “My mother and I were always close and I just didn’t trust anyone else to take care of her, because nobody knew her as well as I did.” David talks about “reacting, firefighting, and suddenly you’re just drawn in, and before you know it, it becomes part of your routine.” Alfredo, navigating life as an only child, speaks honestly about how necessity and love for his mother collided the moment his stepfather passed away. Lifestyle Overhauls and Personal Sacrifice For each son, caring for their mothers led to seismic shifts in their daily lives. Plans are always tentative, boundaries are tested, and a new form of “parenting” emerges. As Alfredo vividly describes: “Nobody told me growing up that I'd have another kid in my 50s—only she’d be in her 80s and have opinions!” From rearranging work schedules to leaving reassuring Post-its for an anxious parent, the logistics become second nature, though the emotional toll lingers. The men openly discuss balancing frustration, guilt, and even resentment with deep love. They offer comfort in recognizing that no one is “superhuman”: “It’s almost like we do expect ourselves to be perfect...and that never happened,” Christy reflects. While the stories in “Sons Caring for Mothers” circle around men, the lessons ring true for anyone on a caregiving journey. There are no perfect solutions, only the imperfect, beautiful bonds of love, memory, and forgiveness. After the Podcast Learn more about David, Vincent, and Alfredo and purchase their books here. Learn about the Moderators Marianne Sciucco Christy Byrne Yates 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 welcome grief expert Danielle Southwick for a heartfelt and enlightening conversation on one of the most universal yet often misunderstood experiences: grief. Danielle reminds us that grief is a normal and natural part of life—it’s not something to hide, fix, or rush through. She expands our understanding of grief by explaining that it doesn’t only come from the death of a loved one. Grief shows up in many forms: Tangible losses, such as the death of someone close, graduating from school, or relocating to a new city.Intangible losses, like losing a sense of identity, confidence, faith, or emotional connection.Disenfranchised grief, a type of loss that isn’t always recognized or validated by society—for example, mourning the death of a public figure or a pet, or feeling grief over a relationship that others might not have seen as significant. Danielle explains that the grieving process is deeply personal and complex. It’s not just about what we’ve lost—it’s also about the unspoken words, the dreams that were never fulfilled, the roles we no longer play, and the parts of ourselves that don’t feel heard. The healing process begins with a small but essential step—what she calls the 1%. It’s the decision to acknowledge the grief and allow ourselves to feel it. That small act of courage can open the door to greater healing. As Danielle says, "The rest will come, but the first step must be yours." This episode is a powerful reminder that grief is not a weakness—it's part of being human. Whether you're grieving a person, a season of life, or an old version of yourself, there’s space for your feelings, and healing is possible. Join us for this deeply compassionate conversation about how to give yourself—and others—permission to grieve and the grace to heal.