Sue Ryan, an internationally recognized speaker, author, and founder of The Caregivers Journey. Over more than 40 years, Sue has dedicated her life to guiding caregivers through one of life’s most demanding experiences: supporting loved ones with dementia and other long-term conditions.
What sets Sue apart isn’t just her expertise, it’s her compassion, authenticity, and ability to translate hard-won lessons into actionable tools. Her mission is simple but powerful: help caregivers move from surviving to thriving.
The Beginning of a Lifelong Calling
Sue Ryan’s caregiving story began when she was in her mid-20s. At the time, she was a rising professional in the software industry, working for companies like Management Science America, Dun & Bradstreet Software, and PeopleSoft, long before it was acquired by Oracle.
But while she was building her corporate career, she was also quietly caring for family members, including her grandmother, father, and later, her husband.
“I never felt I could talk about being a caregiver,” Sue recalls. “It wasn’t accepted in the workplace back then. You just didn’t show up and say, ‘I’m taking care of someone at home.’”
Balancing a demanding job with caregiving responsibilities left her emotionally drained but deeply reflective. Over time, she realized there was a greater purpose to her experience: to help others navigate caregiving with more knowledge, less fear, and greater peace.
If you want to understand how caregiving often begins unexpectedly and reshapes your life, When Retirement Feels Too Small: How to Reclaim Purpose, Connection, and Joy is a great companion resource for rediscovering meaning during major life transitions.
Creating “The Caregivers Journey”
Years later, Sue reconnected with an old friend, Nancy Treaser, whose husband had been diagnosed with dementia. As Nancy struggled to find resources and support, she often turned to Sue for advice.
“One day Nancy said, ‘Not everyone has a Sue,’” Sue remembers. “That’s when we decided, we have to do something about this.”
Together, they co-founded The Caregivers Journey, a nonprofit organization and podcast dedicated to dementia family caregivers. Their mission: to replace overwhelm and confusion with clarity, confidence, and compassion.
Their approach is simple but effective, “practical tips and candid conversations.” They’ve built a growing community of caregivers through:
- The Caregivers Journey Podcast
- Free educational guides and blogs
- A 20-step Navigating Dementia Caregiving Roadmap
Each tool is designed to help caregivers understand what to expect, how to prepare, and where to find help at every stage of the journey.
Massive Acceptance and Radical Presence
One of Sue’s most powerful lessons came from a deeply personal moment with her father, who had dementia.
She recalls one evening when her dad insisted on walking the dog at dusk. There were two doors to the porch, one led to a safe, concrete path, and the other opened onto a steep hill. As Sue tried to guide him toward the safer option, he became agitated and pushed past her.
In that moment, Sue realized she was still expecting him to think logically, something dementia had taken away.
“I had accepted that he had dementia,” she says, “but I hadn’t fully accepted it. I was still asking him to be who he used to be.”
That night inspired Sue’s first TEDx Talk, centered on the concept of “Massive Acceptance and Radical Presence.”
“Massive acceptance means accepting things exactly as they are, without judgment,” she explains. “You don’t have to like it or understand it. You just have to accept it. Then, with radical presence, you stay fully in the moment so you can make the wisest choice.”
It’s a philosophy that’s guided her not just as a caregiver, but as a coach, speaker, and leader.
If you want to learn a compassionate framework for understanding dementia behaviors, Teepa Snow’s GEMS® Method: A Revolutionary Way to Understand Dementia is a great companion resource for navigating cognitive decline with empathy and clarity.
The Hidden Cost of Caregiving in the Workplace
Sue’s professional experience gives her unique insight into the challenges faced by working caregivers.
“When I was in corporate America, caregivers couldn’t self-identify,” she says. “If you admitted you were a caregiver, you risked losing opportunities.”
Today, she helps business leaders recognize how caregiving affects their workforce, and how easily they can create systems of support.
She points out that companies already have frameworks for temporary life events like maternity leave, bereavement, or medical recovery. The same logic, she says, can apply to caregiving.
“Dementia caregiving is a temporary season,” Sue explains. “It has a beginning, a middle, and an end, just like other major life events. Companies already know how to manage these transitions. They just need to include caregivers.”
According to Sue, the hidden cost of caregiving to U.S. businesses is an estimated $40 billion annually. But with awareness, policy changes, and compassion, that can change.
If you want to explore how families can prepare financially and avoid crisis-driven decisions, Everything You Need To Know About Long-Term Care Insurance is a great companion resource for comparing coverage, benefits, and long-term planning options.
Building the Roadmap: A Guide for Every Stage
Sue and Nancy’s most recent project, The Navigating Dementia Caregiving Roadmap, breaks the caregiving journey into three stages:
- In the Beginning:
When a diagnosis is first received, families face confusion, denial, and information overload. The roadmap provides basic guidance, trusted resources, and emotional support tips to help caregivers take the first steps. - The Messy Middle:
As the disease progresses, caregivers must take on more responsibility, often while the loved one still resists help. The roadmap provides communication strategies and coping tools to ease this stage. - Later On:
When full-time care becomes necessary, caregivers learn how to balance safety, dignity, and emotional closure while preparing for end-of-life decisions.
Each phase includes 20 actionable steps, from navigating Medicare and palliative care to building emotional resilience and finding community support.
“We wanted to create what we wish we’d had,” Sue says. “Something that tells you what you need to know, when you need to know it.”
If you want practical strategies for managing conflict, communication, and family expectations, How to Recognize Early Signs of Dementia In Your Parents is a great companion resource for addressing issues before they become overwhelming.
Understanding Palliative Care and the Medicare Guide Program
One of Sue’s major goals is educating caregivers about underutilized resources, especially palliative care and the Medicare Guide Program.
She admits she once misunderstood palliative care herself, believing it was only for the final days of life.
“That’s a huge misconception,” she says. “Palliative care is for living better, not dying.”
Palliative care provides holistic support, physical, emotional, and logistical, for both patients and families. It can start early in the journey, long before hospice care becomes relevant.
The Medicare Guide Program is another tool she highlights. It helps caregivers find local support, home safety assessments, and case management, often at no cost.
“These programs exist,” Sue says, “but most people don’t know about them. We’re here to change that.”
Drip Grief: The Hidden Emotional Weight of Caregiving
Beyond logistics and finances, Sue also addresses the emotional toll of caregiving, especially what she calls “drip grief.”
“It’s not one big wave,” she says. “It’s tiny drops, every day, when your loved one can’t do something they used to, or when you realize you’ll never take that trip again. It eats at you slowly.”
Acknowledging drip grief, she says, helps caregivers process emotions instead of suppressing them. Her advice? Find community, talk about it, and practice self-compassion.
The Importance of Self-Care (and Saying Yes to Help)
For Sue, self-care isn’t optional, it’s essential. She encourages caregivers to adopt the “oxygen mask” mindset: take care of yourself first, so you can care for others better.
She suggests:
- Getting an accountability partner to keep you honest about your needs.
- Attending support groups, both online and in person.
- Using respite programs offered by churches and community centers.
- Practicing small moments of rest, reflection, and gratitude.
“We’re great at lying to ourselves,” she says. “We say, ‘I’ll rest later,’ but later never comes. You can’t pour from an empty cup.”
Her number one rule? If someone offers to help, say yes.
Understanding the “Sandwich Generation”
Sue also sheds light on the sandwich generation, adults who are simultaneously caring for aging parents and raising their own children.
“You can be sandwiched in your 20s or your 40s,” she says. “You’re caring for parents or grandparents while still building your own career or family.”
She paints a vivid picture:
Parents living longer, healthcare costs skyrocketing, and families juggling multiple generations under one roof.
“It’s a lot of financial, emotional, and time pressure,” she says. “Some families come together beautifully. Others struggle. But creativity and teamwork can make it easier.”
When Memory Care Becomes Necessary
Not every family can provide long-term home care. As dementia progresses, memory care communities often become the safest option. But the costs, often $8,000–$10,000 a month, are daunting.
“Most people didn’t plan for this,” Sue explains. “They saved for retirement, not for years of memory care.”
While Medicaid can cover certain facility costs, in-home caregiving support remains underfunded. That’s why Sue advocates for more awareness and financial planning, ideally before a crisis hits.
If you want to confidently evaluate senior care communities and understand your options, What Families Need to Know About Assisted Living Communities is a great companion resource for comparing care levels, costs, and red flags to watch for.
Family Dynamics and Finding Harmony
One of the hardest parts of caregiving isn’t the logistics, it’s the family dynamics.
“There’s no simple answer,” Sue says. “You’ve got siblings who disagree, out-of-town relatives who criticize, and everyone has different ideas about what’s best.”
She encourages families to focus on the bigger picture, what’s best for the whole family, not just the individual.
“When people come together, it’s beautiful,” she says. “One family I know had brothers who couldn’t be there physically, so they arranged for grocery delivery and cleaning services. Everyone contributed in their own way.”
Her takeaway: There’s no perfect plan, but teamwork makes the load lighter.
Choosing Joy and Finding Purpose
After decades of caregiving, for her father, husband, and others, Sue could have chosen rest. Instead, she chose joy.
“I’m not an active caregiver anymore,” she says, “but I see this as my purpose. I was blessed to show my husband and my dad how much I loved them. Now I get to help others do the same.”
Her philosophy on life after caregiving is beautifully simple:
“I wake up every day unquenchably curious about what there is to learn and what else is possible. I choose joy.”
The Caregivers Journey Podcast and Resources
Today, The Caregivers Journey Podcast has surpassed 20,000 subscribers. Each episode focuses on real-life challenges and solutions, from communicating with loved ones to managing healthcare and emotions.
Sue’s first book, Our Journey of Love: Five Steps to Navigate Your Caregiving Journey, shares lessons learned from caring for her husband and father. She and Nancy are now working on a series of guidebooks expanding on their roadmap and podcast insights.
All resources, from the guides to the roadmap, are available free of charge through their nonprofit.
“We never recommend anything we haven’t personally used,” Sue emphasizes. “We want caregivers to know they can trust us.”
Looking Ahead: Sue’s Next TED Talk
Sue is now preparing for her second TEDx Talk, focused on how we use, and misuse, three powerful emotions: guilt, worry, and sorry.
“We use these words automatically,” she says. “We say ‘I feel guilty’ or ‘I’m sorry,’ but we don’t process what we really mean.”
Her goal is to help people replace automatic reactions with conscious compassion, turning words into meaningful connections.
Final Thoughts: A Message to Every Caregiver
Sue Ryan’s story is one of grace under pressure, resilience in the face of profound grief, and love carried out through everyday actions. Her journey reminds us that caregiving is not merely a responsibility, it is a calling, a testament to the strength of the human spirit and the power of compassion.
Her message to caregivers everywhere is both simple and profoundly true:
“You are not alone. You are doing sacred work. Accept what is, stay present, and never stop choosing joy.”
These words are an invitation to breathe, to give yourself grace, and to recognize the quiet heroism in all you do. Caregiving can feel isolating, overwhelming, and exhausting, but Sue’s experience is a reminder that connection and support are always possible, and that even in the toughest moments, there is room for hope.
By accepting life as it unfolds, you free yourself from the weight of what “should have been.” By staying present, you allow love to guide your actions, one moment at a time. And by choosing joy — not as a denial of hardship, but as an act of courage, you honor both yourself and the person you care for.
To every caregiver walking this path: your efforts matter, your heart matters, and your journey is seen. May you continue forward with strength, compassion, and the knowledge that you are deeply appreciated
Connect with Sue Ryan
- Website: thecaregiversjourney.org
- Podcast: The Caregivers Journey — available on Spotify, Apple, and Google Music.
- Book: Our Journey of Love: Five Steps to Navigate Your Caregiving Journey
- LinkedIn: Sue Ryan