The Caregiver's Journey

6d ago

"The difference between TV as comfort and TV as chaos isn't the screen—it's understanding how the changing brain experiences what's on it." Do you rely on television to help occupy your loved one's time? Does your care receiver seem agitated or anxious when the TV is on? Have you noticed them leaving the room when a show is playing or struggling to follow programs they once enjoyed? 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 what soothes us as caregivers can actually cause distress for people living with dementia. In this episode, we spoke with Allyson Schrier, co-founder and president of Zinnia TV and former caregiver for her husband with frontotemporal dementia, about why regular TV can be problematic and what we can do about it. Let's explore four essential tips for managing TV time effectively. 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 Additional Resources Mentioned Zinnia TV https://www.zinniatv.com Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney Takeaways Tip 1: Be Thoughtful About What’s On TV The answer isn’t to take TV away completely. We need to be thoughtful about what we put on the TV and pay close attention to how our loved ones respond. Tip 2: Target Something That Creates Curiosity Without Agitation The goal is to find programming that engages without overstimulating or causing your loved one to fall asleep (because daytime sleeping can lead to nighttime wakefulness). Tip 3: Leverage Simulated Presence Therapy The innovative approach of simulated presence therapy takes advantage of how people with dementia can experience confusion between what’s on screen and what’s actually happening — and uses it to benefit them. What is simulated presence therapy? Research has shown that when someone will only take medication or follow instructions from a specific person (like a daughter or doctor), showing them a video of that person giving the instruction can work just as effectively as having the person physically present. Tip 4: Create Engaging Alternatives On Your Own Beyond television, there are creative ways to provide visual engagement that work better with how the dementia brain processes information. Observe and Adjust Managing the television experience for someone with dementia isn’t about finding one perfect solution. What works today may not work next month as the disease progresses, and that’s reasonable. The process is about observing how your loved one responds and adjusting accordingly. The key is understanding the changing brain experiences television very differently than we do. Through being thoughtful about what’s on the screen, targeting content that engages without overwhelming, leveraging simulated presence therapy, and creating our own alternatives, we can turn TV time from a potential source of agitation into a positive opportunity for comfort and connection. Read More in This Blog here

Dec 2

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/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/50-family-dynamics-in-caregiving-four-essential-tips-alzheimers-and-other-dementias/ Additional Resources Mentioned Barry’s website www.caregiveranswerbook.com Buy the Caregiver Answer Book on Amazon https://amzn.to/4i9V9ZL Navigating Dementia Caregiving Roadmap guide https://thecaregiversjourney.org/guides/#guides Support 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).

Nov 18

Do you know what you need to do immediately after your loved one passes? Many caregivers don't. Are you worried about missing important tasks or feeling overwhelmed by the sheer volume of administrative, financial, and legal responsibilities? We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer's and other types of dementia, we've navigated the challenging process of handling death-related responsibilities firsthand. Between us, we've experienced the loss of multiple loved ones and learned valuable lessons about what needs to be done and when. 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 If you are following along with our 20 step Navigating Dementia Caregiving Roadmap guide this is part of Step 20. This is the first guide listed on our guides page. There are many things that can be done ahead of time. We covered these in podcast episode 30 - End of life preplanning and blog as well as in the matching worksheet you can find on our website in the guides section called ‘End of Life Service Worksheet’. Click here to get to the Guides page, scroll down to find the sheet. Tip 1: Prioritize these things immediately after death1. Tip 2: Move to this list within the first few days and weeks Tip 3: Over the next few weeks and months - manage their estate Tip 4: Focus on the things to prioritize once the estate has been closed

Nov 4

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/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 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

Oct 21

Have you noticed yourself feeling sad when your loved one can't remember their phone number? Do you find yourself withdrawing from friends or losing patience more easily? These feelings might be grief—and you may not even realize it's happening. 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 grief doesn't only come after our loved one passes away. It's present throughout our entire caregiving journey, from the moment of diagnosis through each individual change along the way. The good news is that understanding grief—recognizing it, honoring it, and learning to move through it without getting stuck—can transform how we experience our caregiving journey. Today we're sharing six essential tips to help you navigate grief with grace and compassion. 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/47-navigating-grief-throughout-caregiving-six-essential-tips-alzheimers-and-other-dementias/ Additional Resources Mentioned Guide: Navigating Dementia Caregiving Roadmap: https://thecaregiversjourney.org/guides/ Support the nonprofit The Caregiver's Journey: https://give.cornerstone.cc/thecaregiversjourney Takeaways Read More in This Blog here

Oct 7

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 Preplanning TCJ blog: 30. End of Life Service Preplanning Leverage 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 Hospice TCJ 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.

Sep 23

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

Sep 9

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/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/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 Network TCJ 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 Keys TCJ 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.