The Caregiver's Journey

“When families are prepared — physically, emotionally, logistically — they are able to handle these moments a lot differently. There’s less panic, less guilt, and a little bit more empowerment.” — Dr. Taylor Rush One minute, everything’s fine. The next minute, your loved one is on the floor. If fall prevention isn’t on your radar yet — or if you’re waiting until after the first fall happens — you’re not alone. But there’s a lot you can do right now to be better prepared. We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we know firsthand how frightening falls can be — and how much the fear of a fall can affect both the person you’re caring for and yourself. We’re sharing five practical tips drawn from the expertise of Dr. Taylor Rush, clinical health psychologist and director of behavioral sciences and interdisciplinary programs at the Cleveland Clinic Center for Neurological Restoration. Taylor specializes in chronic neurological conditions including Parkinson’s and movement disorders, with a deep focus on supporting care partners through the challenges they face every day. Let’s walk through five essential tips for preventing falls, handling them when they happen, and managing the emotional aftermath — for both you and your loved one. 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 Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourneyTaylor Rush: https://www.linkedin.com/in/taylor-rush-phd-488149352/Cleveland Clinic for Neurological Restoration: https://my.clevelandclinic.org/departments/neurological/depts/neurological-restorationThe Caregiver’s Journey Navigating Dementia Caregiving Roadmap: https://roadmap.thecaregiversjourney.org/ Available as an interactive page on our website that walks you through the three stages of your dementia family caregiver journey. Includes the option to download the guide for free. Takeaways We shared 5 tips: Know your loved one's fall risk factorsReduce risk with practical prevention strategiesStart the conversation early — and have a planStay calm and assess — don't panic in the momentManage the emotional aftermath of a fall Read More in This Blog

“I don’t think any of us should be trying to assist a person with dementia without first walking in their shoes.” — PK Beville, Ph.D. Have you ever wondered what it actually feels like to live with dementia? Do you find yourself struggling to understand why your loved one behaves the way they do, wishing you could see the world through their eyes- even for a moment? There’s a powerful tool that can help you do exactly this. We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we know how much empathy and understanding matter in day-to-day care. We’re sharing insights today from PK Beville, Ph.D., founder of the global nonprofit Second Wind Dreams® and inventor of the Virtual Dementia Tour, a simulation experience that has changed how nearly five million people worldwide understand and care for people living with dementia. If you’re following along with the Navigating Dementia Caregiving Roadmap, this is part of Step Seven — educating yourself. You can find the full roadmap as an interactive page on our website at thecaregiversjourney.org. Steps one through six help you build your foundation right after a diagnosis. Steps seven through ten are about deepening your understanding, and the Virtual Dementia Tour is one of the essential resources we recommend in this phase. Let’s explore three essential tips — from understanding what the Virtual Dementia Tour is, to applying what you learn at home, to finding one near you. 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/62-what-is-a-virtual-dementia-tour-three-essential-tips-alzheimers-and-other-dementias/ Additional Resources Mentioned Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourneySecond Wind Dreams: https://secondwind.org/The Caregiver’s Journey Navigating Dementia Caregiving Roadmap: https://roadmap.thecaregiversjourney.org/ Available as an interactive page on our website that walks you through the three stages of your dementia family caregiver journey. Includes the option to download the guide for free. Takeaways We shared 3 tips: Learn what happens in a Virtual Dementia TourApply what you learn at homeFind a virtual dementia tour near you Read More in This Blog https://thecaregiversjourney.org/62-what-is-a-virtual-dementia-tour-three-essential-tips-alzheimers-and-other-dementias-2/

"While we can't reverse aging, regular mental activity — these exercises, regular cognitive engagement — helps keep cognitive skills stronger for longer. It's like exercising your body." — Dr. Daniel Fenton What if you could make small changes and have more intentional conversations with your loved one that actively stimulate their brain? You're not doing one more thing — you're simply being more deliberate about conversations you're already having and sneaking in more benefits along the way. We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer's and other types of dementia, we understand how meaningful it is to find ways to help our loved ones function at their best for longer. We're sharing insights about cognitive stimulation therapy (CST) from Dr. Daniel Fenton, head of neuropsychological services at New Days, a virtual clinic specializing in care for people with mild cognitive impairment and early-stage dementia. Let's explore three essential tips for bringing cognitive stimulation therapy into your everyday conversations at home. 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/60-use-cognitive-simulation-therapy-at-home-three-essential-tips-alzheimers-and-other-dementias/ Additional Resources Mentioned Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourneyhttps://www.newdays.ai/The Caregiver’s Journey Navigating Dementia Caregiving Roadmap: https://roadmap.thecaregiversjourney.org/ Available as an interactive page on our website that walks you through the three stages of your dementia family caregiver journey. Includes the option to download the guide for free. Takeaways We shared 3 tips: Tip 1: Create A Simple Structure Tip 2: Leverage These Types Of Activities Tip 3: Don’t Forget To Wrap Up And Reflect Read More in This Blog https://thecaregiversjourney.org/60-three-tips-for-using-cognitive-stimulation-therapy-at-home/

Have you ever heard of a certified senior advisor? Would you even know what you needed or how to find one? You're not alone if the answer is no — and there are clear steps you can take to get the right help at the right time. We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer's and other types of dementia, we understand how overwhelming it can be to recognize when something has changed and know where to turn next. We're sharing insights from Cynthia Perthuis, principal owner of Senior Care Authority in Southwest Florida and a certified senior advisor, about finding, evaluating, and implementing solutions along the caregiving journey. If you're following along with the Navigating Dementia Caregiving Roadmap, this aligns with Step Eight. You can find the roadmap as a downloadable digital guide on the guides page of our website, and we've also created it as an interactive page where you can click directly into each step. Let's explore three essential tips for navigating this process — from recognizing when something is wrong, to finding the right help, to building a strategy that works for your whole family. 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/58-what-is-a-certified-senior-advisor-three-essential-tips-alzheimers-and-other-dementias/ Additional Resources Mentioned Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourneySociety of Senior Care Advisors: https://www.csa.us/Cynthia Perthuis: https://www.seniorcare-nyfl.com/eldercare-consultants-in-new-york-city-and-southwest-florida.html#aboutThe Caregiver’s Journey Navigating Dementia Caregiving Roadmap: https://roadmap.thecaregiversjourney.org/ Available as an interactive page on our website that walks you through the three stages of your dementia family caregiver journey. Includes the option to download the guide for free. Takeaways We shared 3 tips: Tip 1: Evaluate your situation Tip 2: Reach out for help Tip 3: Create a strategy Read More in This Blog https://thecaregiversjourney.org/58-what-is-a-certified-senior-advisor-three-essential-tips-alzheimers-and-other-dementias-2/

"One of the hardest parts in spousal caregiving is accepting that we're no longer just partners. We're now caregiver and care receiver. The loss of our emotional and physical partner and the emotional responsibilities we're taking on can really take an enormous toll." Are you struggling to find balance between being a spouse and being a caregiver? Do you find yourself wondering when the shift happened—when your partner became your patient? Have you noticed yourself "forgetting to be a spouse" because you're so focused on getting the caregiving right? We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer's and other types of dementia, we've experienced firsthand the complex role transition that happens when your spouse becomes your care receiver. This journey isn't a sudden switch that flips on diagnosis day—it's a slow, gradual transition that unfolds over years. There's a moment when you realize your relationship has fundamentally changed. Your spouse, your partner, your companion—they're still there. But the person you used to bounce ideas off of can't be that person for you anymore. This transition brings unique challenges, from managing new responsibilities to redefining intimacy to letting go of promises made years ago. Let's explore four essential tips for navigating the changing role from spouse to caregiver while preserving your relationship and your own wellbeing. Connect with us and share your tips: Website: https://thecaregiversjourney.org/ Donate: https://give.cornerstone.cc/thecaregiversjourney 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: sue@thecaregiversjourney.org, nancy@thecaregiversjourney.org Full Show Notes https://thecaregiversjourney.org/56-when-your-spouse-becomes-your-patient-alzheimers-and-other-dementias/ Additional Resources Mentioned Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney Takeaways We shared 4 tips: 1. Find the balance in your changing role 2. Give yourself permission to get help 3. Keep connection while intimacy is redefined 4. Give yourself permission to let go of promises you made years ago. Read More in This Blog https://sueryansolutions.medium.com/the-changing-role-navigating-the-transition-from-spouse-to-caregiver-90acd5fde819?postPublishedType=repub

“An accurate early dementia diagnosis is essential. It can make a significant difference in how families navigate the diagnosis.” Esther Kane, MSN, RN Your loved one has been diagnosed with dementia… but do you ever wonder if they’ve been diagnosed with the correct type? Do you find yourself thinking: “This diagnosis doesn’t quite fit what I’m seeing.” You’re not alone. Getting the correct diagnosis opens the right doors to support, care, and community that you might not have known existed. We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we’ve learned firsthand that not all dementias are the same. Understanding the specific type of dementia your loved one has ensures they’re receiving the correct medical care and helps you connect with the education, targeted support groups, and research opportunities tailored to your loved one’s specific needs. In this post, we’re sharing insights from Esther Kane, a registered nurse and the Director of Support and Education for the Association for Frontotemporal Degeneration (AFTD). As a director of nursing in multiple memory care facilities, Esther’s entire career has been supporting and caring for individuals living with all types of dementia. In her role at AFTD, Esther works to advance early, accurate FTD diagnoses in order to improve the quality of life for those impacted by the disease. We’re exploring five essential tips for ensuring your loved one receives the correct dementia diagnosis and how to leverage this knowledge for better care. Full Show Notes https://thecaregiversjourney.org/54-why-the-right-dementia-diagnosis-matters-five-essential-tips-alzheimers-and-other-dementias/ Additional Resources Mentioned Alzheimer’s Association 10 signs of dementia: https://www.alz.org/alzheimers-dementia/10_signsNavigating Dementia Caregiving Roadmap guide: https://thecaregiversjourney.org/guides/Association for Frontotemporal Dementia (AFTD): https://www.theaftd.org/Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney Takeaways Tip 1: Learn More About Dementia and Push to Dig Deeper Tip 2: Find Your Specific Diagnosis Community, Resources, and Support Tip 3: Monitor Disease Progression and Prepare Tip 4: Investigate Clinical Trials Tip 5: Understand the Genetic Risk Associated with This Diagnosis Read More in This Blog https://sueryansolutions.medium.com/53-why-the-right-dementia-diagnosis-matters-five-essential-tips-alzheimers-and-other-dementias-b6afe1179898?postPublishedType=repub

Are you prepared if a major storm threatens your area? Do you know whether to evacuate or shelter in place with your loved one who has dementia? Have you created a communication plan that accounts for potential power outages and cell tower failures? We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer's and other types of dementia, we understand how storm season brings critical decisions that require advance planning. Whether your loved one lives at home or in a care community, preparing for storms demands special considerations for people living with dementia. Recently, we spoke with Celeste Lynch, Executive Director at Moorings Park Grand Lake in Naples, Florida. With nearly 40 years of experience in senior living leadership, emergency planning, and resident safety, Celeste shared invaluable insights on storm preparedness from both the care community and at-home perspectives. If you're following along with the Navigating Dementia Caregiving Roadmap Guide, today's topic aligns with Step 14: Create a Care Plan and Family Emergency Plan. Let's explore four essential tips for weathering storms safely with your loved one who has dementia. 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/52-preparing-for-stormy-weather-four-essential-tips-alzheimers-and-other-dementias/ Additional Resources Mentioned Navigating Dementia Caregiving Roadmap guide: https://thecaregiversjourney.org/guides/Moorings Park community: https://www.mooringspark.org/ FEMA assistance programs: https://www.fema.gov/DisasterAssistance.gov: https://www.disasterassistance.gov/Relief organizations such as the Red Cross: https://www.redcross.org/Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney Takeaways We shared 4 tips: Preparing Ahead of Time Decide whether you will shelter in place or evacuateStrengthen Your Communication Plan Before, During, and After the Storm Post storm, safely get them back in their routine Read More in This Blog here

Are you struggling to pull your family together to create a working support system for someone living with dementia? Do you find family members disagreeing on what needs to be done or how to help? You're not alone, and there's a path 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 that transforming family dynamics into effective teamwork is one of the most challenging—yet most rewarding—aspects of the caregiving journey. In this episode, we spoke with Dr. Barry Jacobs, a clinical psychologist and family therapist who brings both professional expertise and personal caregiving experience to this conversation. Barry cared for his mother with vascular dementia and his stepfather with Alzheimer's disease for seven years, and he co-authored the AARP Caregiver Answer Book with his wife, psychologist Julia Mayer. This content aligns with Step 8 of our Navigating Dementia Caregiving Roadmap: Start Planning for the Next Stage of Care, particularly when building your personal support network of family and friends. 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/50-family-dynamics-in-caregiving-four-essential-tips-alzheimers-and-other-dementias/ Additional Resources Mentioned Barry’s website www.caregiveranswerbook.comBuy the Caregiver Answer Book on Amazon https://amzn.to/4i9V9ZLNavigating Dementia Caregiving Roadmap guide https://thecaregiversjourney.org/guides/#guidesSupport the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney Takeaways Transforming your family into an effective caregiving team isn’t easy. It’s worth the effort — not just for your loved one with dementia — but for every member of your family. These four tips provide a framework: Create consensus (everyone on the same page).Define an ongoing format for decision making (regular meetings with clear rhythm).Build a family caregiving plan (who does what and when).Plan to deal with conflict (don’t let disagreements become disrespectful).

Are you feeling overwhelmed trying to care for aging parents while raising children? Do you find yourself stretched thin between different generations, each with their own unique needs? My name is Sue Ryan. As a caregiver for loved ones with Alzheimer’s and other types of dementia, I understand the unique challenges faced by those in the sandwich generations. I recently spoke with Christy Byrne Yates, a licensed educational psychologist and author of “Building a Legacy of Love: Thriving in the Sandwich Generation.” Christy has personally navigated the challenges of caring for aging parents while raising her own children, and she brings both professional expertise and lived experience to help families thrive during this demanding season of life. 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 Chirstyyates.com - https://www.christyyates.com/Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney Takeaways Tip 1: C — Choose Your Role as a Caregiver The first step in successfully navigating the sandwich generation is making a conscious choice to embrace your caregiving role. Many people say “I didn’t choose this.” or “I had no choice.” We always have a choice. Even not making a choice is still a choice. Tip 2: A — Address the ‘Elephants’ in the Room Successful sandwich generation caregiving requires having difficult conversations early and often. These are the ‘elephants’ dancing in every family room that everyone sees — but no one wants to discuss. Tip 3: R — Recharge Through Ruthless Self-Care Recharging takes on critical importance when you’re caring for multiple generations. Self-care isn’t selfish — it’s essential for everyone you’re caring for. Tip 4: E — Enlist Your Support Team You’re not meant to journey alone, and this is especially true for sandwich generation caregivers who face multiple competing demands. Building a comprehensive support team is essential for sustainable caregiving. Tip 5: S — Surrender Control and Embrace Grace Perhaps the most challenging aspect of sandwich generation caregiving is accepting that you cannot control everything, even though you desperately want to. If everyone could just do things your way, life would be so much easier — but that’s not reality. Read More in This Blog here

Have you reached the point where you're now fully responsible for your loved one's care and safety? Do you find yourself guiding others or managing all aspects of their daily needs? You've entered what we call "later on"—the final stage of the caregiving journey, and while some aspects may feel more manageable, new challenges and emotions emerge that require specific attention and planning. This final phase completes our comprehensive 20-step roadmap for dementia caregiving, covering the essential steps when you've moved beyond the messy middle into full caregiving responsibility. Connect with us and share your tips: Website: https://thecaregiversjourney.org/ 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: sue@thecaregiversjourney.org, nancy@thecaregiversjourney.org Guide: Navigating Dementia Caregiving Roadmap https://thecaregiversjourney.org/guides/ Donate: https://give.cornerstone.cc/thecaregiversjourney Full show notes Additional Resources Mentioned Later On - You are now managing all aspects of their care 18. Plan for their End of Life Service: You may have done this with your loved one just after their diagnosis. If not, do this without them now:26 minute TCJ podcast: 30. End of Life Service PreplanningTCJ blog: 30. End of Life Service PreplanningLeverage this End of Life Planning Worksheet. 19. Call in hospice. If you are not working with palliative care or a US Medicare GUIDE program organization (both of these are able to tell you when it’s time to call in hospice)Find a hospice organization. Get a doctor's referral. Schedule an initial evaluation. It’s almost never too early to get the initial evaluation, so don’t wait.Search ‘hospice’ + ‘your country’ - or in the US - ‘your state’. Scroll down until you get below the sponsored links where it says ‘Places’:Click on ‘More places’ to get a list with a map. Notice rating stars and those located around your area.Schedule an initial consultation with two so you can compare.Educate yourself on when to call in hospice:26 minute TCJ podcast: 29. When To Call In HospiceTCJ blog: 29. When To Call In Hospice. 20. Continue your self-care. Learn about Anticipatory Grief. Read this AARP article:How To Manage Mourning a Loss Before It Happens.Honor your grief, be compassionate with yourself, reach out for support:Each of us navigates the loss of our loved one in our own time and way.It’s reasonable when your caregiving journey ends you may feel any or all of:A sense of relief because your journey has ended and your loved one is no longer suffering, Guilty at the same time because you feel relieved.A loss of your own identity, from prioritizing your loved one for so long.Not sure what to do next.If you feel lost, reach out to your family, support group, faith community, friends, professionals. Most importantly - reach out! 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.

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 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.

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

“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