The Caregiver's Journey

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: sue@thecaregiversjourney.org, nancy@thecaregiversjourney.org Full Show Notes Additional Resources Mentioned 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.  Read More in This Blog here

Have you ever felt overwhelmed because you don’t know what information you need, can’t find reliable sources, or feel frustrated by too much conflicting advice? We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we’ve learned having a step-by-step roadmap is crucial for navigating the beginning of your caregiving journey. We recently talked with Jenny Gay, licensed clinical social worker with Emory Integrated Memory Care, about the comprehensive 20-step caregiving journey roadmap guide Navigating Dementia Caregiving: Your Resource Roadmap for Every Stage. This podcast is bringing the first six essential steps to take immediately after diagnosis. Connect with us and share your tips: Donate: https://give.cornerstone.cc/thecaregiversjourney Instagram: https://www.instagram.com/thecaregiversjourney/ Facebook: https://www.facebook.com/thecaregiversjourneys/ Full Show Notes Here In the Beginning - First Steps - Right after the diagnosis 1. Choose a palliative care organization. This will likely also serve as your hospice organization later in your journey. In your search engine, type ‘Palliative Care’ + ‘the name of your country’ or, in the US ‘the name of your state’. Schedule an initial consultation with more than one so you can compare. Educate yourself on what palliative care is: 27 minute The Caregiver’s Journey (TCJ) podcast: 42. When To Call In Palliative Care 2. Create an Advance Care Plan. Get your legal documents in order and do some initial end of life preplanning with your loved ones input: Contact your attorney or an elder law attorney NAELA.org. Listen to this podcast or read this blog on elder law attorneys: 32 minute TCJ podcast: 31. Elder Law Attorneys Alzheimer’s Association legal documents overview: Leverage this End of Life Planning Worksheet. 3. Understand the financial situation. Work with a financial advisor - especially those who focus on seniors. Elder law attorneys can also advise in this area. Alzheimer’s Association resources overview of financial planning 4. Find support groups. First and foremost for you. If possible, find a support group you can attend in person: The Alzheimer's Association support group finder has support groups for a variety of types of dementia. If your loved one is interested a support group: Dementia minds has online groups for people living with dementia. Many local senior centers have support groups for your loved one to increase socialization: In the US, go to your ‘countyname’.gov website and search for a senior center. The Alzheimer’s Association 24/7 helpline in the US: 1.800.272.3900. 5. Educate yourself on early caregiving journey topics. Listen to these two podcasts or read these two blogs. Memory Loss: 29 minute TCJ podcast: 2. Memory Loss Communication: 20 minute TCJ podcast: 3. Communication – in the Beginning 6. Investigate the US Medicare GUIDE program. Listen to this podcast or read this blog: 23 minute TCJ podcast: 39. Is the Medicare GUIDE program for you Understand if your loved one may be eligible: https://www.cms.gov/priorities/innovation/guide/faqs#ben-cgs. If you think you might be eligible, find a US Medicare GUIDE program provider near you. There may be several who cover your zip code so explore options. Go here to find a GUIDE program: Enter your state. Under models select ‘Guiding an Improved Dementia Experience (GUIDE) Model’. Click ‘Display selected’. You can use the plus and minus signs in the upper right corner to zoom in closer to your area. When you find the location you want, click on the blue dot and detailed contact information will show. 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. Full blog here

Are you feeling overwhelmed by the complexity of dementia care? Do you find yourself wishing you had more support navigating medical decisions and planning for the future? You’re not alone - and there’s specialized help available that many caregivers don’t fully understand. We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we both wish we had understood what palliative care is and how to leverage it earlier in our journeys. Unfortunately, when palliative care was first explained to us, it was explained incorrectly, and neither of us took advantage of all the great things palliative care has to offer. We recently spoke with Dawn Kolderman, a registered nurse and Senior Clinical Director of Palliative Care Services at Avow, who has more than 30 years of nursing experience with the last 20 focused on palliative and hospice care. Dawn shared invaluable insights about palliative care that we wish we had known sooner. 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: sue@thecaregiversjourney.org, nancy@thecaregiversjourney.org Full Show Notes Additional Resources Mentioned Avow Palliative Care LinkSupport the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney Takeaways Tip 1: Understand What Palliative Care Actually Is The first step is clearing up common misconceptions about palliative care.  Palliative care is a holistic approach to a life-limiting disease. This includes dementia — which is indeed a life-limiting disease.  The key difference between palliative care and hospice care: Palliative care patients are at the beginning of their journey and are still seeking aggressive, curative treatment while seeing all their providers and specialistsHospice care patients are generally at the end of their journey, no longer seeking aggressive treatment, and focusing on comfort care. Palliative care is an additional supportive layer of care that works collaboratively with all your existing medical providers. Most importantly, palliative care focuses heavily on the caregiver. Tip 2: Call Palliative Care In — Here’s How Many caregivers don’t realize how accessible palliative care is or when to call it in. The answer is simple: the earlier, the better. Tip 3: Understand the Goals of Palliative Care Palliative care has specific, comprehensive goals that address both immediate and long-term needs. Primary goals include: Relieving physical symptoms first Supporting the caregiver and family Education and collaboration Advanced care planning (ACP). This crucial component involves sitting down with the patient, caregiver, and family to discuss important decisions while your loved one can still participate in these conversations. Tip 4: What Else You Need to Know About Palliative Care There are several important aspects of palliative care that many people don’t realize. Your loved one won’t look sick. The goal is to help them live their life fully. Early intervention builds stronger relationships. The nurse navigator’s role is specifically to connect you with community resources you might not know about.  Read More in This Blog here

Have you ever thought, "I wish I knew how to have a constructive conversation with my manager about how to align my work responsibilities and my caregiving responsibilities?" Today we're sharing strategies to help working family caregivers thrive at both work and at home. We're sharing four tips. We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer's and other types of dementia, we understand how caregivers often feel torn between their responsibilities at home and their professional responsibilities, which they're trying desperately to fulfill, often without support. 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: sue@thecaregiversjourney.org, nancy@thecaregiversjourney.org Full Show Notes https://thecaregiversjourney.org/41-aligning-work-and-caregiving-responsibilities-four-essential-tips-alzheimers-and-other-dementias/ Additional Resources Mentioned Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney Takeaways Tip 1: Self-Identify and Strategically Disclose Assess your company culture firstExamples of supportive company policiesDisclose early in the journeyPlan your conversationFrame it collaborativelyDocument everything Tip 2: Build Flexibility Explore flexibility options in your organizationPropose pilot arrangementsConsider team involvementCreate backup plansLeverage technologyConsider career flexibility Tip 3: Leverage Your Resources Connect with colleagues who are also caregiversExplore Employee Assistance Programs (EAPs)Look for community resourcesTake things off your plate Tip 4: Plan for the Unplanned Understand your benefits and protectionsCreate a caregiving budgetExplore financial resourcesBuild an emergency fundPrepare for career transitions Read More in This Blog https://sueryansolutions.medium.com/40-building-your-personal-caregiving-support-network-9f9639e9ae87

“In the marathon that is caregiving, the difference between exhaustion and endurance isn’t willpower, it’s the strength of the support network we build around us.” Sue Ryan Are you feeling overwhelmed by the responsibilities of caregiving? Do you find yourself thinking, “I don’t have time to get everything done.” or “I should be able to do this myself.”? You’re not alone, and there’s a better way forward. We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we’ve learned building a strong personal support network is crucial for sustainable caregiving. Studies show that dementia family caregivers face overwhelming emotional challenges. Connect with us and share your tips: Website: https://www.thecaregiversjourney.comDonate: 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: sue@thecaregiversjourney.com, nancy@thecaregiversjourney.com Full Show Notes: https://thecaregiversjourney.org/40-create-your-personal-support-network-five-essential-tips-alzheimers-and-other-dementias/ Additional Resources Mentioned 27. The Realities of Caregiver Self-Care https://thecaregiversjourney.com/the-realities-of-caregiver-self-care-four-essential-tips-alzheimers-and-other-dementias/32. Navigating the Caregiver Hiring Process https://thecaregiversjourney.com/32-navigating-the-caregiver-hiring-process-five-essential-tips-alzheimers-and-other-dementias/Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney Takeaways Tip 1: Assess Your Needs and Make a List Ask yourself: Do I have time to get everything done that needs to be done?Am I physically strong enough to handle all caregiving tasks?Do I find myself losing patience or empathy?Is my loved one struggling with activities of daily living that I can't manage alone? If you answered yes to any of these questions, it's time to ask for help.  Tip 2: Create a List of Who Can Help and What They Can Do Think about all the people who have offered to help or who might be willing to help. Map your list of potential helpers to your list of needs. If multiple people can help with a particular task, list them all—it's better not to rely on just one person. Tip 3: How to Effectively Ask for Help Recognize that some people want to help your care receiver, while others want to help you. Be specific and direct about what you need and why you need it.Remember that the people on your list have likely already offered to help or have shown willingness to support you.Adapt your approach based on the person you're asking.  Tip 4: When People Offer to Help, Say "Yes" Avoid these common traps: "It would be easier just to do it myself.""No one can care for my loved one like I can.""I should be able to do this myself.""I feel guilty—they have their own busy lives." Tip 5: Maintain Your Support Network and Adjust as Things Change Encouraging open communication with your support team membersBeing proactive about finding new support team members when neededChecking in regularly with your helpers to keep them informed and engagedWatching for signs of burnout in your helpers—they may experience caregiver fatigue tooAddressing inflection points in your loved one's care needs Read More in This Blog https://sueryansolutions.medium.com/36-building-your-personal-caregiving-support-network-9f9639e9ae87

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

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.

"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

“An educated and confident family caregiver who knows what to do in their role is really the absolute best medicine for the care receiver.” Dr. Carolyn Clevenger Do you know extensive research specifically focused on dementia caregivers is being conducted? Are you aware of innovative studies designed to equip family caregivers with navigation skills? Now you will, and you’ll be learning about valuable opportunities to strengthen your caregiving journey. We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we are continuously learning new ways to support our health and well-being, and that of our care receivers. We recently discovered the groundbreaking dementia caregiver research, the CANDO Study, Dr. Carolyn Clevenger, DNP, RN, GNP-BC, AGPCNP-BC, FAANP, FGSA, FAAN, Professor at the Emory University Nell Hodgson Woodruff School of Nursing is conducting. When most people think about dementia research, they focus on studies involving people living with dementia or pharmaceutical treatments. This crucial area of research focuses on supporting the family caregivers themselves. Dr. Clevenger is a professor and gerontological nurse practitioner who is nationally recognized as an education leader in advanced practice nursing and geriatrics. Carolyn founded, and directs, the comprehensive dementia care model called Integrated Memory Care (IMC), which provides memory and primary care in a single integrated approach for people living with dementia and their care partners. Full Show Notes https://thecaregiversjourney.org/36-learn-to-navigate-support-systems-four-essential-tips-alzheimers-and-other-dementias/ Additional Resources Mentioned Dr. Carolyn Clevenger, a nationally recognized educational leader in advanced practice nursing, geriatrics and gerontology, shares her groundbreaking work on dementia family caregiver education programs that teach new caregivers how to transition into the role and navigate various support systems.For more information about joining this study, visit scholarblogs.emory.edu/CAN-DO/.Savvy Caregiver course: Available face-to-face or online (in-person version includes support group benefits)“Best Programs for Caregivers” website: A collaboration between the Benjamin Rose Institute on Aging and Family Care Alliance featuring only research-proven programs.Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney Additional Resources Mentioned Takeaways Tip 1: Understand Different Levels of Care Early Home-Based CareCommunity-Based ProgramsResidential Care Options Key considerations: Each level has different eligibility requirements and payment structuresAvailability varies by state—some follow federal guidelines, others have state regulationsPeople often wait until they desperately need memory care but try to access assisted living instead, creating unnecessary stress Tip 2: Stay Ahead of Financial Challenges Protect your assets while maintaining oversightUnderstand the early warning signsWatch for judgment impairment issues Tip 3: Leverage Legal Support from Elder Law Experts What sets elder law attorneys apartSpecialized dementia expertiseLong-term benefits Tip 4: Take Evidence-Based Classes What makes evidence-based courses effectiveMeasurable outcomes The CAN-DO Study: Training Caregivers as Navigators Dr. Clevenger's current research project, CAN-DO (Caregiver As Navigator Developing Skills Online), trains family caregivers to navigate four critical systems: healthcare, financial, legal, and family systems. Course structure: Six-week online course following three families through different types of dementiaEach day presents real-life scenarios with appropriate responses and preventive measuresVideos from subject matter experts including elder law attorneys, investigators, estate planners, and healthcare providers

Is your loved one in a memory care community, or are you considering moving them into one? Understanding how to build a collaborative relationship with the care team is crucial for ensuring the best outcomes for your loved one. 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 creating a true partnership with care community staff can dramatically improve quality of care and reduce stress for everyone involved. We recently spoke with James Lee, CEO and co-founder of Bella Groves, an award-winning memory care community. With over 17 years of experience in senior living and memory care, James has developed valuable insights on how to transform what is often an adversarial relationship between family caregivers and professional caregivers into a collaborative partnership. Full Show Notes https://thecaregiversjourney.org/35-build-a-partnership-with-your-care-community-six-essential-tips-alzheimers-and-other-dementias/ Additional Resources Mentioned Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney Takeaways Tip 1: Assess the Overall Fit When looking for a memory care community, many families focus on practical aspects like location, price, and amenities. While these factors are important, James suggests that philosophical alignment and rapport with the management team are even more crucial for long-term success. When evaluating potential communities, James recommends shifting your mindset from "us versus them" to "us collectively versus dementia." This perspective can transform the relationship from the beginning. Tip 2: Embrace the Community Aspect Moving your loved one from home to a community setting represents a fundamental shift in their care environment—from one-on-one care to being part of a group. Tip 3: Acknowledge Your Role Has Changed When your loved one moves into a care community, your role shifts from being the primary caregiver to being a care partner working alongside professional caregivers. Tip 4: Recognize That the Diagnosis Will Progress A critical aspect of the care partnership is understanding that your loved one's condition will continue to change over time. In fact, by the time someone moves into a memory care community, they're often in the steeper part of their dementia journey where changes happen more rapidly. Tip 5: Acknowledge Your Grief The dementia journey involves ongoing loss, a phenomenon Sue calls "drip grief." As your loved one's condition progresses, you experience new losses almost daily—abilities that disappear, memories that fade, personality changes that emerge. Tip 6: Engage with the Community Caregiving Team The families whose loved ones have the best quality of life tend to be those who actively engage with the care team. This engagement goes beyond basic communication to building genuine relationships with the people caring for your loved one. Building a True Partnership Creating a collaborative relationship with your loved one's care community team isn't just about being nice—it's about achieving the best possible outcomes for your loved one with dementia. By reframing the relationship from "us versus them" to "us collectively versus dementia," you can transform what is often an adversarial dynamic into a true partnership. As James explains, "You are your loved one's expert, we are dementia experts. And the two together give us the best chance to get this right." Read More in This Blog here

Adding a new caregiver to your support team can be a challenging transition, whether they're coming into your home, assisting your loved one who lives alone, or joining the care team in a memory care community. This transition can be particularly difficult for those caring for loved ones with Alzheimer's or dementia, as changes in routine can cause confusion and resistance. If your loved one doesn't think they need help (and let's be honest, many don't), don't give up too quickly. Be patient and allow the process time to unfold. As one experienced caregiver shared, "He told the new caregiver for at least the first couple of weeks, every time she came, 'You need to go home.' She would just smile at him and say, 'Well, I'm not going home just yet.'"

Are you prepared for others to take care of your loved one? Do you have a care plan in place? Having a comprehensive care plan is one of the most important tools a caregiver can create — not just for emergencies, but for everyday peace of mind. We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we’ve learned the importance of creating a care plan for our loved one. We spoke with Amanda Lukoff, co-founder and CEO of Eleplan, about what a care plan is and how to create one that works for your unique situation. Amanda's journey to creating Eleplan was deeply personal. Her brother Liam, who has autism, is her "North Star" and the inspiration behind her career path, including going to law school for special education law. Through observing her parents' caregiving journey with Liam, Amanda recognized the need to capture all the knowledge that lived in her parents' heads so that others could provide care that truly honored who Liam is as a person. Connect with us and share your tips: Website: https://www.thecaregiversjourney.comDonate: 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: sue@thecaregiversjourney.com, nancy@thecaregiversjourney.com Additional Resources Mentioned Episode 32: Navigating The Caregiver Hiring Process https://thecaregiversjourney.com/32-navigating-the-caregiver-hiring-process-five-essential-tips-alzheimers-and-other-dementias/Eleplan Website: https://www.eleplan.com/Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney Full Show Notes https://thecaregiversjourney.com/33-how-to-create-a-care-plan-five-essential-tips-alzheimers-and-other-dementias Takeaways Tip 1: Start with the Basics The first step in creating a care plan is to document the essential information that would allow someone to provide short-term care (even for just 30 minutes) while you step out. This includes: Emergency contactsMedications and dosagesHigh-level meal preferencesAllergiesRelevant medical conditions Tip 2: Outline Preferences and Daily Routines Beyond the basics, a good care plan should capture what makes your loved one unique—their preferences, personality traits, and daily routines. Your care plan should include: Likes and dislikesDaily schedule and routinesBedtime and morning ritualsBehavioral patternsEmotional triggers (both positive and negative) Tip 3: Document What to Do in an Emergency Crisis situations demand clear instructions. Your care plan should outline: What constitutes an emergency for your loved oneWhen to call 911 vs. other resourcesWho to contact and in what orderSpecial instructions for EMTs or ER staffLocation of important medical documents Tip 4: Collect Key Contacts and Documents Gathering important documents in one accessible location is critical for seamless care. This includes: Insurance cardsHealthcare directivesPower of Attorney documentsGuardianship formsMedical history and medication lists Tip 5: Keep Everything Accessible and Current A care plan is only effective if it's up-to-date and easily accessible. Amanda frames this with an important question: "Do I have a system that is as dynamic as the needs of my loved one and the ever-changing piles of documents and information?" Whether you're using a physical binder, shared digital documents, or a specialized platform like Eleplan, the key is having a system that makes updates easy and ensures the information is available whenever and wherever it's needed. Read More in This Blog

When the time comes to bring professional caregiving support into your loved one’s life, the process can feel overwhelming. Whether you’re hiring a caregiver for home care or to complement care in a community setting, understanding how to find, evaluate, and select the right person is crucial for both your peace of mind and your loved one’s well being. We are Nancy Treaster and Sue Ryan, we’ve developed five essential tips for hiring a paid caregiver, based on real experiences and practical advice from caregiving experts. These insights will help you navigate this important transition with confidence and clarity. Connect with us and share your tips: Website: https://www.thecaregiversjourney.comDonate: 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: sue@thecaregiversjourney.com, nancy@thecaregiversjourney.com Full Show Notes https://thecaregiversjourney.com/32-navigating-the-caregiver-hiring-process-five-essential-tips-alzheimers-and-other-dementias/ Additional Resources Mentioned Episode 5: Home Alone https://thecaregiversjourney.com/leaving-your-care-receiver-alone-six-essential-tips-alzheimers-and-other-dementias/Episode 28: Home and Community Living Options https://thecaregiversjourney.com/time-for-a-change-home-and-community-living-options-five-essential-tips-alzheimers-and-other-dementias/Episode 30: Elder Law Attorneys https://thecaregiversjourney.com/they-know-what-we-dont-elder-law-attorneys-four-essential-tips-alzheimers-and-other-dementias/Episode 33. How To Create a Care Plan: Five Essential Tips / Alzheimer’s and Other Dementias https://thecaregiversjourney.com/33-how-to-create-a-care-plan-five-essential-tips-alzheimers-and-other-dementiasSupport the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney Takeaways Tip 1: Assess Your Loved One’s Needs Before you begin searching for a caregiver, it’s important to thoroughly understand what kind of support your loved one requires. This assessment will guide all your subsequent decisions about the type of caregiver, frequency of care, and specific qualifications needed. Consider these key areas when assessing needs: Activities of Daily Living (ADLs)Medical NeedsHousehold Management TasksSafety ConcernsTransportation and MobilityCompanionship Needs Tip 2: Determine the Type of Caregiver and Frequency Needed There are three main categories of paid caregivers, each with different training levels and capabilities: Companion CareCertified Nursing Assistant (CNA)Skilled Nursing Tip 3: Understand Your Financial Resources Review Your Financial Resources Savings and investment accountsLong-term care insurance policiesRegular income sourcesFamily financial contributions. Explore Available Benefits MedicareMedicaidVeterans Benefits Consider Family Contributions Tip 4: Decide Between Agency or Private Hire When you work with a caregiving agency: They Handle Administrative TasksThey Provide Backup CoverageThey Offer Training and SupervisionThey Assume Liability Private Hire Benefits It’s Usually Less ExpensiveYou Have Complete ControlThere’s Often More FlexibilityYou May Find Through Word-of-Mouth Private Hire Challenges You’re the EmployerNo Backup CoverageLimited Screening Resources Tip 5: Evaluate potential caregivers thoroughly Key Questions for Interviews Scheduling and AvailabilityQualifications and ExperienceApproach to CareCommunication Style Background Checks and References Set Clear Expectations Especially for private hires, establish from the beginning that the arrangement is on a trial basis. Include Your Loved One When Appropriate Next Steps: Care Plans and Integration Develop a written plan Develop an Integration Strategy Read More in This Blog here 

We don't know what we don't know. But elder law attorneys do, and their expertise can be transformational for families facing aging-related challenges. Whether you're dealing with a recent diagnosis, planning for potential long-term care needs, or simply trying to prepare for the future, understanding how and when to work with an elder law attorney can make all the difference in your journey. In this episode, we'll explore four essential tips for working with elder law attorneys, based on insights from Beth Prather, a board-certified elder law attorney with 32 years of experience, and Courtney Lovejoy, an elder law attorney with a Master of Laws in elder law. Their expertise in Medicaid planning, VA benefits, estate planning, probate, trust administration, and guardianship offers valuable perspective for anyone navigating the complex legal landscape of aging and caregiving. Connect with us and share your tips: Website: https://www.thecaregiversjourney.comDonate: 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: sue@thecaregiversjourney.com, nancy@thecaregiversjourney.com Full Show Notes https://thecaregiversjourney.com/they-know-what-we-dont-elder-law-attorneys-four-essential-tips-alzheimers-and-other-dementias/ Additional Resources Mentioned www.NAELA.org The National Academy of Elder Law Attorneys website has a searchable directory. "They have a really good search function where you can type in your zip code and find elder law attorneys within a certain radius," Courtney notes.State-specific organizations: For example, Florida has the Academy of Florida Elder Law Attorneys (www.AFELA.org).Beth Prather: https://www.gskattorneys.com/attorneys/beth-a-prather/Courtney Lovejoy: https://www.gskattorneys.com/attorneys/courtney-van-emmerik-lovejoy/Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney Takeaways Tip 1: How to Find an Attorney Who Specializes in Elder Law Finding the right elder law attorney requires more than just a quick Google search. Here's how to identify professionals with genuine expertise in this specialized field: Look for Specialized Credentials Professional credentials can be helpful indicators of specialized knowledge in elder law: Board Certification: IMaster of Laws (LLM) in Elder Law: Ask the Right Questions How many Medicaid applications did they file last year?What percentage of their practice focuses on elder law?Do they handle guardianships, Medicaid planning, or VA benefits cases regularly? Use Reliable Resources to Find Specialists NAELA.org:State-specific organizations: For example, Florida has the Academy of Florida Elder Law Attorneys (AFELA.org).Personal referrals: Tip 2: Prioritize These Legal Documents and Planning Tools Once you've found an elder law attorney, certain planning tools should take priority: Comprehensive Durable Power of AttorneyConsider Long-Term Care InsuranceLimit or Avoid GiftingAvoid DIY Planning Common DIY mistakes include: Adding children to bank accounts or property titlesGiving away assets based on outdated or incorrect adviceTrying to "hide" assets from Medicaid Tip 3: Understand Medicaid and VA Benefits Options A significant part of elder law involves helping clients navigate government benefits for long-term care: Tip 4: Use This Time to Address Other Important Legal Matters Review Beneficiary DesignationsCreate an Asset InventoryConsider Account ConsolidationAddress Healthcare Decision DocumentsBe Cautious About Adding Others to Accounts or DeedsDiscuss End-of-Life Preferences

When you’re grieving, the last thing you need to be doing is planning a service. Pre-planning allows you to make only two decisions when death occurs: what day and what time the service will be held. Everything else can be arranged in advance, giving you the space to honor your loved one while processing your grief. We are Sue Ryan and Nancy Treaster, and we recently spoke with Greg Cannon, who has more than 45 years of experience in the funeral profession, including as a funeral director. Greg shared his expertise on planning ahead for a loved one’s service, offering eight essential tips that can make all the difference during a difficult time. Rate, Subscribe, Share the Podcast and Share Your Tips on Social Media! Please click here to review, follow, subscribe to and share our podcast.   Connect with us and share your tips: Website: https://www.thecaregiversjourney.comInstagram: 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: sue@thecaregiversjourney.com, nancy@thecaregiversjourney.com Full Show Notes https://thecaregiversjourney.com/finding-peace-in-preparation-end-of-life-service-preplanning-eight-essential-tips-alzheimers-and-other-dementias/ Additional Resources Mentioned End of Life Service Worksheet here Takeaways Tip 1: Choose a Funeral Home Select a funeral home that will meet your needs. This choice may be based on location, previous experience with them, or their reputation.  Tip 2: Decide on Burial or Cremation This fundamental decision shapes many subsequent choices.  If choosing burial, consider: Cemetery locationIf the person is married, reserving an adjoining space for the spouseWhether traditional burial or green burial options are preferred. For cremation, consider: Whether the cremation will happen before or after the service.What will be done with the cremated remains afterward. In both cases, you’ll need to decide what clothing the person will wear. Greg advises bringing a complete set of clothing, including undergarments and outerwear. Shoes are optional and often difficult to put on, but can be included if they’re meaningful. Tip 3: Decide on the Type of Service Funeral services have evolved beyond the traditional.  Traditional Service (for either burial or cremation) Memorial Service Green Burial Direct Cremation or Direct Burial Tip 4: Choose a Location The location for the service could be: A funeral homeA place of worshipA location meaningful to the deceased Tip 5: Prepare the Obituary Rather than writing the complete obituary under time pressure, prepare by: Compiling all necessary information ahead of timeCreating a comprehensive list of family members to includeSelecting a photo or photos to accompany the obituary. Tip 6: Create a Notification Tree Decide ahead of time: Who needs to be notified of the deathWho will notify whomCreate a “notification tree” so you’re not responsible for contacting everyone. Tip 7: Plan the Service Consider these elements and include your care receiver as much as possible: Officiant: Choose the clergy or person who will lead the serviceEulogies: Decide who will deliver them and provide guidanceMusic: Select meaningful songs or hymnsReadings: Choose scripture, poetry, or other readingsPersonal touches: Include memorabilia, photos, or items that represent the person’s life. Consider alternatives to traditional floral arrangements: Family quiltsMeaningful objects (like golf clubs for an avid golfer)Photos. Tip 8: Plan the Gatherings Consider various types of gatherings: Private family dinner before the serviceReception after the service for all attendeesInformal gathering at home with close family and friends.

As caregivers for our loved ones with Alzheimer's and other types of dementia, we've learned that there are many misconceptions about hospice care. Today, we're joined by hospice nurses Nancy Heyerman and Brenda Kizzire to help clarify what hospice really is and when to consider it. Through their extensive experience, they've developed four essential tips to help you navigate this important transition in your caregiving journey. Connect with us and share your tips: Website: https://www.thecaregiversjourney.comInstagram: 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: sue@thecaregiversjourney.com, nancy@thecaregiversjourney.com Full Show Notes https://thecaregiversjourney.com/when-to-call-in-hospice-four-essential-tips-alzheimers-and-other-dementias/ Additional Resources Mentioned The Hospice Care Plan website here Frailty scale here The Hospice Care Plan booklet here The Hospice Care Plan YouTube channel here YouTube video - End of life for a person with dementia here Takeaways 1. Access Your Care Receiver Using the Frailty Scale One of the most important tools in determining when hospice might be appropriate is the frailty scale. This helps track changes that might indicate a need for hospice care. What to Monitor: - Weight loss patterns - Ability to feed themselves - Changes in mobility (e.g., walking distance decreasing) - Transition from walking to wheelchair - Changes in activities of daily living - Increased anxiety or behavioral changes - Decreased verbal communication - Mental status changes 2. Start Documenting This tip might seem obvious, but proper documentation can make a significant difference in getting hospice care approved. How to Document: - Keep a calendar with regular weight measurements - Note changes in mobility and daily activities - Use your phone to track behavioral changes - Record any falls or incidents - Track medication changes and effectiveness - Document observations from other family members and caregivers Important Note: Many primary care providers may not be familiar with the latest hospice criteria. Your documentation helps build a case for hospice evaluation and provides concrete evidence of decline. 3. Research Hospice Organizations  Don't wait until you're in crisis to start researching hospice organizations. Start your research early and be prepared. What to Research: - Available hospice organizations in your area - Their team structure and approach to care - Response time for evaluations and care - Experiences of other families - Specific services offered - Their experience with dementia patients Additional Tips: - Ask for recommendations from other caregivers - Read reviews and testimonials - Consider visiting their facilities if applicable - Ask about their approach to dementia care - Understand their after-hours support system 4. Request a Hospice Evaluation Don't be afraid to ask for a hospice evaluation, even if you're not sure your loved one qualifies. Steps to Get an Evaluation: 1. Ask your primary care provider for a hospice evaluation 2. If met with resistance, emphasize your goals of care 3. Frame it as establishing a baseline if needed 4. Remember that two physicians must agree - your primary provider and the hospice doctor 5. Be prepared to be a "squeaky wheel" if necessary The Hospice Care Plan: A Valuable Resource Nancy and Brenda have created "The Hospice Care Plan: A Path to Comfort," a comprehensive guide that helps families navigate hospice care. This resource includes: - Detailed symptom management guidelines - QR codes linking to instructional videos - Space for individualized care plans - Information about the hospice team - Practical tips for daily care Read More in This Blog here

As caregivers for our loved ones with Alzheimer's and other types of dementia, we often face the challenging question: "Is it time to change my care receiver's living situation?" We are Nancy Treaster and Sue Ryan, and through our experiences, we've developed five essential tips to help you navigate this complex decision-making process. Connect with us and share your tips: Website: https://www.thecaregiversjourney.comInstagram: 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: sue@thecaregiversjourney.com, nancy@thecaregiversjourney.com Full Show Notes https://thecaregiversjourney.com/time-for-a-change-home-and-community-living-options-five-essential-tips-alzheimers-and-other-dementias/ Takeaways 1. Understand Your Financial Resources This foundational step requires a thorough assessment of both current and future financial resources. Professional Resources to Consult: - Financial advisors (especially those specializing in senior care) - Elder care attorneys - Government program specialists Income Sources to Consider: - Care receiver's savings - Pensions - Long-term care insurance - Public health insurance (Medicaid in the US) - Social Security disability benefits - Family contributions Expenses to Evaluate: - Home modifications - Safety adjustments - In-home caregiving costs - Day program fees - Potential lost income if reducing work hours - Care community costs 2. Research Care Options There are three main categories of care options to evaluate: Non-Residential Options: - Respite programs - Memory cafes - Day programs In-Home Options: - Professional caregiving services - Government programs (VA benefits, Medicare services) - Family caregiver arrangements Care Communities: - Memory care specific facilities - Communities with memory care units - Different care models and staffing levels - Waiting list considerations 3. Assess Home Safety This evaluation should include multiple perspectives: Medical Assessment: - Get an updated medical evaluation - Discuss current and future safety risks - Request occupational therapy assessment Key Safety Considerations: - Wandering risk - Cabinet and door safety - Mobility challenges - Fall prevention - Depth perception issues - Stairs and accessibility - Emergency services access 4. Evaluate Medical Needs Current and Future Medical Considerations: - Impact of multiple diagnoses - Care complexity - Required medical procedures - Medication management - Physical care requirements 5. Prioritize Wellbeing for Both Care Receiver and Caregiver This final tip focuses on quality of life considerations for everyone involved. Socialization Needs: - Care receiver's social preferences - Community engagement opportunities - Caregiver isolation prevention - Balance of stimulation and comfort Safety and Emotional Considerations: - Physical safety for both parties - Emotional wellbeing - Caregiver burnout prevention - Managing aggressive behaviors - Personal boundaries Making the Final Decision: - Consider all evaluation points - Involve family members - Maintain awareness of available options - Stay connected with potential care communities - Be prepared to act when needed

When you’re caring for a family member with Alzheimer’s or other type of dementia, you’ve probably heard countless times: “Don’t forget to take care of yourself.” While well-intentioned, this advice can feel overwhelming when you’re already juggling multiple responsibilities! Through our conversation with Elizabeth Miller, we’ve learned that effective self-care is about more than just general advice — it’s about finding practical, sustainable ways to maintain your own wellbeing while caring for others. Connect with us and share your tips: Website: https://www.thecaregiversjourney.comInstagram: 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: sue@thecaregiversjourney.com, nancy@thecaregiversjourney.com Full Show Notes https://thecaregiversjourney.com/the-realities-of-caregiver-self-care-four-essential-tips-alzheimers-and-other-dementias/ Additional Resources Mentioned Happy Healthy Caregiver website here  20 for 2025 Funsheet here Self-Care at Sea cruise here Happy Healthy Caregiver podcast here Just for You daily journal here Takeaways Tip 1: Give Yourself Permission One of the biggest barriers to self-care is the guilt that comes with taking time for yourself. Many caregivers feel it's selfish to focus on their own needs when their care recipient is struggling. Tip 2: Think Broadly About Self-Care Self-care encompasses much more than just physical health. Elizabeth identifies eight key categories: - Practical self-care (like organizing your desk) - Emotional self-care (therapy, journaling) - Social self-care (connecting with others) - Spiritual self-care (following your spiritual path) - Intellectual self-care (learning new things) - Financial self-care (budgeting, planning) - Professional self-care (career development) - Physical self-care (exercise, nutrition) Tip 3: Prioritize and Schedule Self-Care The best self-care strategy is simply putting it on your calendar. Elizabeth recommends creating a "20 for 25" list—twenty things you want to do this year that bring you joy, energy, or peace of mind. These can range from small activities like learning a new game to bigger plans like taking a vacation. Tip 4: Give Yourself Credit Instead of focusing solely on to-do lists, create a "ta-da" list celebrating what you're already doing right. Remember that self-care includes basic activities you're already doing: - Getting sleep - Preparing meals - Basic hygiene - Managing finances - Taking breaks Read More in This Blog here

When you’re caring for a family member with Alzheimer’s or another type of dementia, worries can keep you up at night — but they don’t help you. Through our conversation with Denise Brown, we’ve learned having a solid emergency plan helps calm your worries, reduce your fears, and provide you with peace of mind. Full Show Notes https://thecaregiversjourney.com/are-you-ready-for-an-emergency-get-a-plan-four-essential-tips-alzheimers-other-dementias/ Additional Resources Mentioned Slides used in episode here Caring Our Way community here Family Emergency Plan space on Caring Our Way here Schedule of free planning sessions with consultant here Takeaways Tip 1: Name Your Worry The first step in creating an emergency plan is identifying specific concerns that keep you up at night. Denise's Family Emergency Plan includes eight categories of common caregiver worries: - Delays - Health emergencies - Hospitalizations - Behavioral challenges - Transportation issues - Medication management - Care coordination - Communication needs Tip 2: Develop Your Plan Once you've identified your concerns, it's time to create actionable plans. Remember that plans can take many forms: - Written instructions - Maps or diagrams - Medication lists - Contact information - Behavior management strategies - Transportation arrangements Tip 3: Communicate Your Plan Effective communication ensures everyone involved understands their role. Consider multiple methods of sharing information: - Written letters or emails - Shared online documents - In-person meetings - Physical copies in accessible locations - Regular updates and reminders Tip 4: Update Your Plan Regularly Emergency plans should evolve as circumstances change. Watch for these common triggers that signal the need for updates: - Changes in your care recipient's condition - New diagnoses or medications - Shifts in your own availability - Family member changes - Service provider updates - Transitions to palliative or hospice care About Our Guest Expert Denise Brown founded the Caring Our Way community to support family caregivers. The community offers free resources, including: - Monthly planning sessions - Family Care Manager course - Downloadable planning templates - Online support spaces - Access to certified caregiving consultants You can find these resources at caringourway.com. Read More in This Blog here

When a parent is diagnosed with Alzheimer’s or another type of dementia and the other parent begins their caregiving journey, the dynamic between the caregiving parent and child shifts dramatically. Through our experiences and conversations with families navigating this transition, we've developed six essential tips to help you support your parent as they take on the role of primary caregiver. Connect with us and share your tips: Website: https://www.thecaregiversjourney.comInstagram: 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: sue@thecaregiversjourney.com, nancy@thecaregiversjourney.com Full Show Notes Takeaways Tip 1: Insert Yourself into the Journey The first step is making your presence and support known while respecting your parent’s role as primary caregiver. Key points: Increase visit frequency or phone callsPosition yourself to observe daily dynamicsAvoid judgment of decisionsListen more than adviseShow support without taking over Tip 2: Monitor Caregiver Health Ensuring your caregiving parent maintains their own health is crucial for sustainable care. Key points: Ask specific questions that can’t be answered with “I’m fine”Monitor medical appointmentsDiscuss challenges they’re facingWatch for signs of stress or exhaustionEncourage preventive health care Tip 3: Provide Emotional Support Help your parent maintain connections and avoid isolation while caregiving. Key points: Listen actively to what’s said and unsaidValidate feelings before offering solutionsMaintain normal conversations beyond caregivingEncourage outside activities and interestsHelp research support resources Tip 4: Share the Load Even from a distance, there are many ways to help manage caregiving responsibilities. Key points: Handle digital tasks remotelyCoordinate with local friends and familyCreate support networksHelp with scheduling and planning Tip 5: Participate in Care Details Get involved in both practical and legal aspects of care management. Key points: Obtain necessary legal documents earlySecure medical power of attorneyAddress privacy laws and documentationArrange financial access if neededSupport decision-making processes Tip 6: Support Through Grief Grief occurs throughout the journey, not just at its end. Key points: Acknowledge “drip grief” throughout the journeyHelp maintain connections during caregivingSupport through the final transitionAssist with post-care legal mattersBe sure to process your own grief Special Considerations When creating support systems: Develop emergency plans earlyCreate shared care plansDocument important informationKeep contact lists updatedMaintain flexibility in arrangements About Our Guest Expert This episode featured Andrew Phipps from Empathy Unbound, who shared his personal experience supporting his father as he cared for Andrew’s mother with dementia. Andrew created Empathy Unbound to promote the idea that empathy is one of our greatest superpowers — one that we often don’t recognize or use enough. As Andrew explains, “The ability to take on the experience or position of another to help understand them is invaluable. Putting ourselves in someone else’s shoes helps us understand their situation in a way we couldn’t otherwise.” You can find the Empathy Unbound podcast wherever you get your podcasts. Read More in This Blog here