When the work of caregiving for your loved one becomes unsustainable, stepping back is not abandonment but a thoughtful act of love, planning, and protection. Jadene shares the raw, complicated emotions of handing more responsibility to her son (Matt’s brother), while she’s still here to guide the transition—and the result is a conversation every caregiver needs to hear. Jadene opens up about the guilt, grief, and relief that comes with a decision like this. With Kristin and Molly, she unpacks what it means to shift roles, why the timing matters so much, and how making plans before a crisis can protect everyone involved. The conversation gets real about aging, health scares, family dynamics, and the emotional toll of realizing you can no longer do everything yourself.

You’ll hear honest insights on:
    • Why “passing the baton” before a crisis is a gift to your whole family
    • The difference between caregiver responsibility and motherly love
    • How others can step in thoughtfully when the original plan is no longer sustainable
    • Why guilt shows up even when you know you’re making the right choice
    • The urgent need for more community support for aging families in the disability world

We want to hear from you! Get in touch at: [email protected]

Sometimes the most useful caregiving tools come from places you’d never think to shop. Molly and Kristin share more of the practical fixes and smaller purchases that made a real difference when caring for their loved ones, from safer toileting and easier feeding, to temperature control, skin care, and everyday comfort. If you’re navigating caregiving right now, or you want to be better prepared for when you are, this two-part episode is packed with real-world ideas for you. 

Mentioned in this episode:

Roho toilet cushion (be sure to get the cover, available separately) https://tinyurl.com/4xex5pz3 

Egg crate cushion https://a.co/d/0281qXiO

Skin brush https://a.co/d/062Nm1rm

Squigz suction toys https://a.co/d/06ThJYUS

Pill crusher https://a.co/d/04MiMrTL

Designer Wellness protein smoothie pouch https://designerwellness.com/collections/protein-smoothies

Syringes https://a.co/d/0hAqZC0w

Nectars https://a.co/d/053bud01

Seatbelt adjuster https://a.co/d/00GfQ8EW 

Bumpers (Molly used two: industrial bumper, with a softer baby bumper over it): industrial https://www.uline.com/BL_798/Foam-Bumper-Guards, baby bumper https://a.co/d/0aBugDRk

Mouth swabs https://a.co/d/06s3bOSw

Curved toothbrush https://colliscurve.com/ 

Mattress protector: zip-off https://tinyurl.com/fykhr6dn, cooling https://tinyurl.com/36k5jk9a 

Neck fan https://a.co/d/0bNvDqyE 

PandaEar reusable silicone feeder pouch https://a.co/d/02x077AW

Immersion blender (Molly’s was Cuisinart, Kristin’s was Vitamix—but it doesn’t have to be fancy or have accessories, any brand will do) https://a.co/d/0aDv1aiE

We want to hear from you! Get in touch at: [email protected]

Molly and Kristin talk about the little items that made the biggest difference in their day-to-day caregiving.

Mentioned in this episode:

Squirt bottles https://a.co/d/034vIlPq (Molly’s exact squirt bottles aren’t available, but these are the same type)

Continuous spray bottle https://a.co/d/07X0umdM (Molly’s exact spray bottle for shampooing isn’t available, but any continuous spray bottle will work)

Shower and toilet grab bars https://a.co/d/07ejlZ5t

No rinse shampoo cap  https://a.co/d/0ha9K7Pp

Hand held shower with long hose  https://a.co/d/02BtTj8c

No rinse bathing wipes https://a.co/d/07wU1gy2

Over the bed table https://a.co/d/041tozdk

Large and extra large soft, washable pads (chucks) 

39x55 https://a.co/d/0il6CT9A

36x60 https://a.co/d/052EDWtE

34x36 and 34x52 Amazon.com

Knee pillow https://a.co/d/0a8eckVM;

Pillow for in between the ankles https://a.co/d/00AJi0oA

"Magic skincare potion" https://a.co/d/01h0UnKu; https://a.co/d/07yALMB8; Amazon.com : Dynarex Vitamins A & D Ointment, Ointment with Vitamin A and Vitamin D Skin Protectant, for Diaper Rash and Discomfort, White, 4 - 15 oz Jars of Dynarex Vitamins A & D Ointment : Health & Household

Fidget blanket custom made from Etsy https://www.etsy.com/shop/TotallySewn

Stackable foot stool https://a.co/d/08ks6AUI

Foam yoga blocks https://a.co/d/086eIqH0

Bean bag chair https://a.co/d/06wWq7Sv

Tubi https://a.co/d/0iI2XPVC

TV antenna https://a.co/d/0bi1qCCX (Molly’s exact antenna isn’t available)

Wireless retro telephone handset https://a.co/d/0iI2XPVC

We want to hear from you! Get in touch at: [email protected]

In this heartfelt episode, Molly shares her family’s experience with brain donation, and its incredible importance for Alzheimer's and Down syndrome research. She talks about why they decided to do it, how it worked, and what surprised her the most. Her experience with her Aunt Cathy illustrates the personal journey and questions many of our families face when considering brain donation. This intimate and honest conversation shines a light on not only the practical, but the emotional aspects of making this decision, and provides actionable insights for families who want to learn more.

Links:

About the Alzheimer Biomarkers Consortium-Down Syndrome (ABC-DS) https://abc-ds.org/participants/

ABC-DS brain donation one-pager https://drive.google.com/file/d/1ih7NkHDtzRQu6g9y8FjpCoctAEK5Jo25/view?usp=sharing

ABC-DS brain donation pamphlet https://drive.google.com/file/d/1QHQLYF7d2qwVnkoMr4o1WUg5WpyO13Vj/view?usp=sharing

We want to hear from you! Get in touch at: [email protected]

What happens if a caregiver has a medical emergency while caregiving? And what if the person being cared for doesn’t understand, or can’t call for help? That was the scary situation Jadene’s son was in recently. 

Jadene tells us what happened, and we talk through the emotional and practical implications of the event, as well as brainstorm possible solutions for her moving forward. That frightening, real-life incident opened the door to a wider discussion about the realities of supporting a vulnerable loved one, the challenges of solo caregiving, and the importance of having emergency plans in place before a crisis occurs.

Links:

National Down Syndrome Society’s Caregiver Toolkit https://ndss.org/media/2565

Smart 911 https://www.smart911.com/

We want to hear from you! Get in touch at: [email protected]

Kristin learned some valuable lessons as her brother Matthew progressed through Alzheimer’s disease. Here, she shares her advice for caregivers who are on the dementia journey. 

Takeaways include:

• Take care of yourself!
• Trust your gut and trust your love 
• Acceptance is key to better caregiving, because it allows you to meet them where they are
• Recognize the grief, but allow yourself to let go of what you can’t control
• Stay present—don’t obsess over a timeline, or how much time you have left 
• The power of touch
• What matters: are they safe, are they clean, are they comfortable?
• The disease is unpredictable, so be willing to pivot
• Caregiving can be a gift

We want to hear from you! Get in touch at: [email protected]

Have you ever wished you lived closer to a specialized Down syndrome medical clinic? Have you had to rely on healthcare providers who—even if they are well-meaning—lack the expertise or experience to provide knowledgable care for your loved one? Well, we’ve got good news for you, and it’s called CARE Down Syndrome. This new initiative from the National Down Syndrome Society is a free online education and resource hub designed to equip any healthcare professional with the knowledge, tools, and confidence needed to deliver exceptional care to adults with Down syndrome.

And this is so needed! Most of us rely on primary care professionals who often have limited experience with Down syndrome and may have received minimal training in medical school on how to provide appropriate care. CARE Down Syndrome enlisted more than 40 experts, including Brian Chicoine, MD, of Advocate Medical Group Adult Down Syndrome Center, to extend their expertise to primary care professionals worldwide. Most importantly, CARE Down Syndrome supports better health outcomes for adults with Down syndrome regardless of their proximity to a specialized healthcare provider.

So, if you have a doctor who wants to learn more, please share this exciting new resource with them. Most doctors and nurses have to take continuing education courses anyway. This hub is not only free, but it makes getting those continuing education credits easy. It’s flexible and self-paced. They can start and stop courses at leisure, they can get credit for reading articles, and they have access to an in-depth resource library of relevant subjects all in one place. And did we mention, it’s free? 

So spread the word! Because every adult with Down syndrome deserves quality healthcare, regardless of where they live.

Links:

CARE Down Syndrome https://careds.org/

Project Echo https://www.dsmig-usa.org/project-echo

Down Syndrome Medical Interest Group (DSMIG) https://www.dsmig-usa.org/

About Kandi Pickard, CEO of National Down syndrome Society https://ndss.org/meet-our-staff

About Dr. Brian Chicoine, Medical Director of the Adult Down Syndrome Center (Advocate Medical Group) https://adultdownsyndrome.org/team-member/brian-chicoine-md/ 

We want to hear from you! Get in touch at: [email protected]

Jadene, Kristin, and Molly look back and share what they recall were the earliest signs of dementia in their loved ones. They discuss which symptoms were the same and which were different between the three of them, the importance of documentation, and personal insights into when they each knew the diagnosis was real.

Mentioned in this episode:

Early Detection Screen for Dementia (screening tool) https://www.the-ntg.org/ntg-edsd/documents 

Down Syndrome & Alzheimer’s online support group http://Facebook.com/groups/dsalz

We want to hear from you! Get in touch at: [email protected]

John Nadworny—a retired Certified Financial Planner with over 30 years of experience working with families of individuals with special needs—reveals how true succession planning goes beyond financial security and legal documents. Succession planning takes into consideration the various things that are required for your loved one’s life to continue with fulfillment and joy after you’re gone. John shares practical strategies including a letter of intent, building a trusted team, and fostering ongoing conversations that future-proof your loved one’s care. He also emphasizes that planning isn’t a one-and-done task, it’s a continuous lifelong process that honors your loved one’s happiness as well as security. Discover how to start today, adapt as life unfolds, and ensure your loved one continues to thrive—no matter what tomorrow brings.

In this episode we talk about the emotional, practical, and relational layers of planning: 

- Thinking through roles and responsibilities of who will take over when a parent is no longer here, or unable to continue being the caregiver. 

- The importance of emotional acceptance when planning, and the difficult feelings that often come along with it. 

- Selecting the right guardians or trustees—even if you’re starting late, or are unsure who in your circle to choose.

- Starting the difficult conversations and creating an ongoing process.

- Establishing a vision for your loved one's future so they can continue doing the things they love.

John Nadworny is the co-author of The Special Needs Planning Guide (Brookes Publishing, 2007 and 2022), and was a Certified Financial planner and Wealth Advisor for decades. He’s a father of three—James, Alex, and Ben. James is 35, has Down syndrome, and lives with John and his wife Susan. His other two children, Alex and Ben, worked with him as financial advisors, until 2023 when John retired. Their family company was acquired by Sequoia Financial Group because of Sequoia's commitment to working with families of individuals with special needs. Alex and Ben continued on with Sequoia so they could focus on planning with families rather than managing a company.

Links:

Future Planning: A Roadmap: https://drive.google.com/file/d/1r4ol8DYIXZMJbedITh5boRl2-Dufihjm/view?usp=sharing

Sequoia’s special needs planning resources

https://specialneedsplanning.com/resources/

We want to hear from you! Get in touch at: [email protected]

In this episode, we talk to Jadene about Matt’s recent onset of swallowing issues and other challenges he’s facing in this new phase of the Alzheimer’s journey. Our conversation touches on adapting routines, the myriad of therapy options available, modifying interventions, the importance of compassionate and tailored approaches, and navigating the emotional aspects of these changes.

We want to hear from you! Get in touch at: [email protected]