When I first stepped into the world of caregiving, I didn’t know a thing. I never could have imagined how much life would change. In those early days, I was overwhelmed, unsure of where to turn, and felt deeply alone. There was no roadmap, just an endless flood of questions and a heavy responsibility to care for the person I love, while still showing up for our young children and trying to hold myself together.
Why This Space Exists
One of the most valuable lessons I’ve learned is that while this journey is incredibly hard, we’re not meant to walk it alone. That’s exactly why I created this space -for you, and for me.
This site is more than a reflection of my story. It’s a hub where care partners and advocates can learn, feel connected, and supported. You’ll hear from me but also from trusted voices in dementia care, brain health, wellness, and caregiving, among other experts, who share honest stories and meaningful support, not sugar-coated advice. Whether you’re seeking emotional support, practical tools, ways to look after your own health, or insight into raising your voice as an advocate, this is space is for you.
You Matter Too
You’ll also find guidance on something many of us don’t realize is crucial: caring for ourselves. Because if you don’t protect your own well-being, how can you truly care for someone else? Taking care of yourself isn’t selfish, it’s self-preserving.
I’m excited to watch this space expand as more experts contribute their voices. I want to keep learning, keep growing, and keep finding hope, even in the hardest moments. Sometimes, a shift in mindset is all it takes to bring a little light. Sometimes we just need to feel seen, hear “I get it,” and recognize ourselves in someone else’s story.
Whether you’re just beginning this journey or deep in the experience, I hope this space brings you comfort, strength, and a sense of connection to your community. You matter too. And my hope is that you leave here feeling more supported, more informed, and more empowered.
Your Voice is Powerful
You’ll also find ways to step into advocacy. Whether that means raising awareness, sharing your story, or standing up for others, your voice is powerful. Caregivers deserve more support, more visibility, and more recognition. Together, we can help make that difference.
Welcome to this community, this conversation, and this unexpected journey we’re on together. I’m so grateful we have each other and to be walking it with you.
Congratulations, Emma, on illuminating a dark hallway of PPA FTD and the other variations of PPA. My husband’s personality changed drastically some time before we realized he was I’ll. Finally we had a diagnosis: PPA. All our family are caregivers. He was an Attorney and local Thespian. Now he struggles to speak at all. He exercises and goes to clubs. Life is good.
Ive followed Bruce’s story. Mostly because it’s one the closest to mine. My husband was diagnosed in 2023 at the age of 61. I continue to work full-time as im not close to retirement age and we dont have the resources for me to higher a caregiver. Ive figured out how to manage and keep and eye on him thanks to technology. Ive found few of our friends prior to diagnosis are my after diagnosis friend support group. I want to thank Emma for using her resources to try to help others.
Thank you for starting this it is so needed. The only support i can find in my eastern Nc town is in Raleigh or zoom groups which times dont work for me. The AFtD site is helpful but My husband was diagnosed at age 56. He is 63 now.
Thank you for all you all you are doing. I have been on this ftd CAREGIVING jour for 4yrs. The roller coater ride is real.
Right now i am stuck in anger, i am hoping Your positivity will work its way in.
I truly admire your dedication and your openness in sharing
I’m sorry you know this journey Grace. Please know my energy is not always up and positive. I’ve had a full array of emotions and still do. Its so important to have them. My hope for you is you have found an outlet to express them. xx
Thank you Ms. Willis saw your show tonight with Diane sawyer. I wish there would have been more support when my mom was suffering with altheimer when first diagnosed approx. 15 yrs ago and I truly think she had ftd. She lost everything including speech so watching you tonight I cried reliving all that and I am so sorry mr. Willis is going through this terrible disease. He has been a remarkable man, actor ..human being. We have never missed any of his movies and that smile. ..and I apologize I am not very savvy with technology so I sent a message to you also thru what I saw was a business chat so hoping you see this some where on your end you are remarkable. Stay strong and remember to take care of you..because we always put ourselves last no matter what the issue.
Hi Monica… I’m deeply touched by your message and so sorry for the pain you experienced with your mom. Thank you for your kind words about Bruce and for reminding me about self-care. I see you and send you strength back. E x
Thanks for sharing Your story my wife michele is currently battling ftd thanks again for sharing your story on ABC last night it was so uplifting
Hi Jimmy… I’m so sorry to hear about Michele. And I’m happy the ABC special brought you some comfort. E x
Some of you don’t know this, but I’m a full-time dementia caregiver. I was inspired to share my story after hearing Emma Willis (Bruce Willis’ wife) speak so honestly about her journey. This isn’t about my friends or family — it’s about the bigger picture of how little support caregivers get in general.
Michael is my person — strong, smart, and full of life. Watching dementia take pieces of him has been heartbreaking. And on top of that, so much of this journey has been fighting — fighting with doctors, fighting to be heard, fighting to get the care he deserves. That constant battle wears you down as much as the long nights and the falls.
I love Michael deeply, but let me tell you — this disease is ugly, exhausting, and relentless. Caregivers like me are drowning while the world looks the other way. We don’t just need “thoughts and prayers.” We need real help.
I know I’m not the only one. We’re out here training aides over and over, running on no sleep, juggling meds and falls, and still showing up every day because we love them. But love doesn’t take away the burnout.
It’s time for us caregivers to band together, share the real story, and push for more support. Because no one should go through this alone. If you’re in the trenches too, I see you. Let’s start making some noise.
Hi Robin…. You’ve captured the reality of caregiving so powerfully. Thank you for speaking up and reminding others why support for caregivers matters so deeply. E x