“You don’t have to have all the answers—you just have to take the next step, and know that you’re never walking this journey alone.”
— Sue Ryan
Caring for a loved one with dementia is a journey filled with emotional complexity, quiet sacrifices, and unseen strength. For many, the role of caregiver arrives unexpectedly, with little to no preparation or support. Yet, it is in these moments of uncertainty that people like Sue Ryan rise—not just to care for their loved ones, but to become a guiding light for others navigating the same path. As a seasoned caregiver, advocate, and co-founder of The Caregiver’s Journey, Sue has dedicated her life to transforming caregiving from an isolating experience into a shared, empowering community of support and education.
In this deeply moving conversation, Sue sits down with Stacey Chillemi to share her story, wisdom, and the philosophy that helped her find peace amidst the chaos—what she calls “massive acceptance and radical presence.” From personal lessons in grief, guilt, and self-care to the launch of her nonprofit and podcast, Sue opens up about what it truly means to walk alongside someone in decline—without losing yourself in the process. Whether you’re a caregiver yourself or know someone who is, this interview offers powerful insights, practical advice, and most importantly, the reminder that no one has to walk this road alone.
Thank you so much for joining us, Sue! Our readers would love to get to know you a bit better. Can you tell us a bit about your backstory?
Thank you so much for the warm welcome, Stacey. I’m truly honored to be here. My caregiving journey began in my mid-twenties, during a time when caregiving wasn’t openly discussed and support resources were scarce. There were no groups to turn to, no plain-language explanations, and certainly no roadmaps. I often felt lost, like I was riding an emotional rollercoaster—blindfolded. One day a strategy might work, and the next, it wouldn’t. I was constantly trying to adapt while feeling overwhelmed, scared, and exhausted. That painful beginning sparked a fire in me. I didn’t want others to have to walk that path without guidance. That’s what led to the work I do today through The Caregiver’s Journey with my co-founder Nancy.
What inspired you to become an advocate for caregivers?
The experience of being a caregiver with no resources or support was deeply isolating. I remember leaving the doctor’s office with my loved one, watching them walk away with pamphlets and detailed next steps for treatment—while I walked away with silence. No roadmap, no checklist, not even acknowledgment. It was like caregivers were invisible. That realization became the foundation for everything I do now. I wanted to be the voice and the resource that I didn’t have back then.
Why do you think caregivers are often overlooked in the healthcare conversation?
Because the entire focus tends to go toward the patient and their diagnosis. The systems are structured around treating the illness, which is essential—but what about the people keeping that patient afloat every day? Caregivers are often seen as background characters when, in reality, they’re lifelines. And yet, there’s no training manual, no emotional preparation, and very little practical support. That absence is exactly what we’re working to address.
What are some of the biggest emotional hurdles caregivers face?
One of the toughest is the overwhelming feeling of “I should know how to do this.” That word—“should”—is incredibly damaging. Caregivers put immense pressure on themselves to be experts just because they love someone. But love doesn’t come with a manual for complex diagnoses. Another emotional hurdle is fear—fear of doing the wrong thing, fear of what’s to come, fear of not being enough. These emotions are real and valid, and without the right support, they can consume a person.
How do you personally manage guilt and grief?
Early on, I often said, “I feel so guilty.” But eventually, I took a step back and looked up the definition of guilt. Guilt is feeling responsible for something you’ve done wrong—and that wasn’t accurate. I wasn’t doing anything wrong. I was heartbroken. That’s what it really was—sadness. Deep, aching sadness over what was changing and what I was losing. By reframing my emotions, I could give myself more compassion. Grief also shows up in what I call “drip grief”—little losses every day, especially with dementia. But grief also teaches us how deeply we can love. I’ve learned to honor that feeling and let it pass rather than stay stuck in it.
You’ve developed a concept called “massive acceptance and radical presence.” What does that mean?
It was a turning point for me. I realized I was showing up for my father physically, but not always emotionally. I was still holding onto who he used to be, and that created resistance. One day, it hit me: I needed to accept everything exactly as it was—not because I agreed with it or liked it, but because it was the truth of that moment. That acceptance allowed me to be radically present, fully immersed in the now. That mindset not only transformed how I cared for my father and later my husband, but how I live every single day. It gave me peace, clarity, and the ability to truly see the beauty in small moments—even in the midst of pain.
How did caring for your father and husband simultaneously affect you?
It was one of the most emotionally intense periods of my life. There was an overlap of about 16 years, and though it was exhausting, it was also full of growth. Because I had learned so much during my father’s journey, I was able to make wiser, more grounded decisions when it came to my husband. That was one of my dad’s final gifts to me—he had taught me how to think clearly, even when my heart was breaking.
What’s the biggest lesson you want caregivers to understand?
That the most important thing you can do for your loved one is to care for yourself first. Self-care is not selfish—it’s strategic. You can’t show up fully if you’re depleted. If your health suffers, everything else does too. I learned that lesson the hard way, and that’s why I speak about it so often.
Tell us more about the importance of an accountability partner.
Having someone in your life who helps you stay true to your self-care is invaluable. I had a dear friend who became that person for me. There were days when I was deeply sad or overwhelmed, and she let me talk it out without judgment. And then she’d say, “Okay, what are we going to do about it?” That small shift—from “you” to “we”—meant everything. I wasn’t alone anymore. She held me accountable with love and helped me move forward.
What was your experience like balancing a career while caregiving?
It was challenging, and for a long time, I didn’t talk about it at work. I felt like it wasn’t something that belonged in a professional setting. But I now realize how damaging that silence was—not just for me, but for others like me. That’s why I’m passionate about helping workplaces support caregivers. Caregiving doesn’t discriminate—it affects people at every level, from entry-level employees to CEOs. We have to stop pretending it doesn’t exist in the workplace.
What gap did you see in caregiver support that led to The Caregiver’s Journey podcast?
Nancy and I were frustrated by how few practical resources were out there. A lot of content felt fluffy or vague. We wanted to offer real, candid conversations with actionable advice—things caregivers could try that same day. We also wanted to talk about what didn’t work for us, so others wouldn’t have to learn the hard way. Our goal has always been to make the journey feel a little less lonely and a lot more doable.
Why do you think people hesitate to accept help?
Many caregivers fall into the trap of self-isolation. They feel like asking for help means they’ve failed. Or they worry they’re being a burden. But if someone offers help, it’s because they care. I tell caregivers to make a list—what could someone do for five minutes, thirty minutes, a few hours? That way, when someone says, “Can I help?” you’re ready. Accepting help allows others to be part of your support system—and it brings relief you didn’t know you needed.
What advice would you give someone who just became a caregiver?
The first step is to take a breath. Then ask questions—lots of them. If you’re at the doctor’s office, ask about resources for caregivers. Go online, look for support groups, podcasts, websites. Don’t try to hide what’s happening. The more people who know, the more support you’ll receive. And remember, you’re not supposed to know everything. This is a journey of learning, and there are people ready to help guide you.
What do you want every caregiver to remember on their journey?
That they will get through it. Even on the days when it feels like too much, they are stronger than they think. It’s important to remind yourself that you are not alone—there is an entire community of caregivers out there who are walking this same path, facing the same uncertainties, frustrations, and emotional highs and lows. You don’t have to carry the weight of caregiving by yourself. The journey is challenging, yes—but within that challenge is also the possibility of growth, connection, and profound love. Reaching out, accepting help, and giving yourself grace can truly transform your experience.
How can listeners support The Caregiver’s Journey?
There are a few powerful ways to support our mission. First, visit our website at thecaregiversjourney.org. There, you’ll find our podcast filled with heart-centered, real-life conversations that speak directly to caregivers’ needs. Subscribing and sharing the podcast helps expand our reach, ensuring more caregivers know they are not alone. If our work resonates, donations to our nonprofit are always welcome and deeply appreciated—they go directly toward creating more resources and support for caregivers navigating this complex season of life. We’re in this for the mission, not the money. Our goal is simple: to uplift, educate, and walk alongside caregivers every step of the way.
If you had to sum it up and really emphasize some important factors from our conversation today, what are some things you’d like the audience to take away from this conversation?
Caregiving is not something anyone should have to do alone. That’s one of the biggest takeaways. If you know someone who is caring for a loved one—reach out. Offer them a listening ear, a helping hand, or even just a kind word. And if you are the caregiver, know this: you don’t have to wear a cape. You don’t need all the answers. You just need support, community, and the courage to say, “I could use some help.” There is no shame in asking. There is strength in vulnerability. Be gentle with yourself and lean on those who truly want to walk with you through the journey.
Where can people find you and find your organization?
You can find us at thecaregiversjourney.org. We’ve recently trademarked our name and transitioned into a nonprofit organization—something we’re incredibly proud of. Our site is a hub of support. From podcast episodes and resource links to personal stories and practical tools, we’ve designed everything with the caregiver in mind. Whether you’re just beginning your journey or deep in the trenches, you’ll find something there to help guide, support, and uplift you.
Thank you so much, Sue. This has been an incredible and eye-opening conversation. Your vulnerability, wisdom, and purpose-driven mission are a gift to so many.
Thank you, Stacey. I’m truly grateful for this opportunity to share from the heart. Caregiving can feel like the loneliest road, but it doesn’t have to be. We are all in this together, and I hope this conversation helps someone feel a little more seen, a little more supported, and a whole lot less alone.
