"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: [email protected], [email protected]

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

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/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: [email protected], [email protected]

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:

1. Create consensus (everyone on the same page).
2. Define an ongoing format for decision making (regular meetings with clear rhythm).
3. Build a family caregiving plan (who does what and when).
4. Plan to deal with conflict (don’t let disagreements become disrespectful).

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: [email protected], [email protected]

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

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: [email protected], [email protected]

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 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: [email protected], [email protected]

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

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: [email protected], [email protected]

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. 

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: [email protected], [email protected]

Full Show Notes

Additional Resources Mentioned

Messy Middle

First Steps - You recognize it’s time to assert more control 

11. Focus on safety. 

• Listen to these podcasts or read these blogs.
• Home Alone - Hear about the deal breakers for living home alone:
• 21 minute TCJ podcast: 6. Home 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

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: [email protected], [email protected]

Full Show Notes

https://thecaregiversjourney.org/44-navigating-dementia-caregiving-roadmap-in-the-beginning-steps-7-10-alzheimers-and-other-dementias/

Additional Resources Mentioned

Navigating Dementia Caregiving Roadmap Guide

In the Beginning - continued

Next Steps - You are ready for more 

7. Continue your education:

• Take the Savvy Caregiver course in person or online.
• Read this magazine:  
• Mayo Clinic Living with dementia: A guide to caregiving and support. 
• Find and take a virtual dementia tour near you. In the United States, in your search engine, type ‘virtual dementia tour’ + ’your state’. For example: ‘virtual dementia tour Florida’ or, outside the US, replace your state with your country.

8. Start planning for the next stage of care.

• Build your personal support network:
• 21 minute TCJ podcast: 40. Create Your Personal Support 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. 

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