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
I just finished viewing your wonderful interview with diane sawyer. it was truly inspirational and emotionally riveting. i only wish i had seen it several years ago.
my wife, jeannine, was diagnosed with ppa about five years ago although she was certainly exhibiting symptoms previously. We were unable to get a diagnosis locally and it was only when we decided to drive to chicago (about 2 hours away) that her ailment was confirmed. Since then, my caregiver journey has been much like yours. i absolutely didn’t know what i didn’t know and i still feel like i make more mistakes in my role than i should.
one of the comments you made in the interview that really struck me was understanding the loss of empathy in my wife. she was always the most empathetic and caring person i’ve ever know. she could cry at the slightest thing or reach out to anyone in need. now the tiniest show of emotion is rare. it reminds me of a book i read a year or so ago, that you might be aware of. it was by a former governor of wisconsin entitled “my two elaines.” his wife had alzheimers but i can certainly relate: longing for the woman I married and dealing with a different woman today – all because of this disease,
i just ordered your new book and look forward to reading it. thank you so much for your advocacy for ftd patients and caregivers. in the meantime, please know my prayers are with you and your family.
Dear Emma, I watched your interview with Diane Sawyer via replay on abc live streaming. Thank you, thank you, thank you for giving a voice to those of us walking the same path as yourself, but are still unheard. I could easily have traded places with you in that interview since so much of what I’m experiencing with my husband is similar, except we do not yet have an official diagnosis. I live with the constant grief of losing my best friend, and yet no one on the outside can see this. I cannot just mention ftd to just anyone we associate with since he’s very high functioning. THE lack of outside confirmation of what is obviously ftd, makes me feel like I’m going crazy. I just wish his doctors would have done a better job.
Dear Emma,
Thank you. Just THANK you. Like Bruce, I grew up in Jersey and went to Montclair State . . . like Bruce, I ended up in entertainment . . . but UNlike him, my career was halted not from becoming a patient, but a caregiver.
So THANK you, Emma. For being a beacon of light not just for your beautiful family, but for me, mom, and this incredible community that we’re all so grateful for. I’ll be goin’ public with my journey next year, but for now I’m goin’ to your Tuesday event and hope to say hi. But either way, you’re loved and appreciated more than you can possibly know . . .
Hannah, hang in there. I knew what my husband’s changes were due to, because I am a speech pathologist. I had PPA patients on my caseload and frontal lobe patients (from other causes) as well. I knew for 5.5 years before confirmed by an M.D. A previous neurologist commented that i was just an oversensitive wife. Please, doctors, believe the spouses! What rescued me was the A.L.L.F.T.D. study, where the neurologist confirmed bv-FTD. March 2024. Friends and family still don’t always “get it” because “high functioning” is my husband’s current status as well.
Hello. I saw both of your interviews. It was very enlightening. My husband has the behavioral variant of ftd. To put that life is not easy is a huge understatement. This past year and a half is the LONELIEST i have ever felt. You give me inspiration. Thank you again
Take care,
Carolyn Fugazzi
Emma, i watched both interviews – one with diane sawyer aNd one with oprah. Thank you gor being a voice for all of us. I started following your story when Bruce was diagnosed with aphasIa because my husband had the same diagnosis and same symptoms. We also got our FTD diagnosis about the same time. I suffered in silence for at least a year crying all the time and searching for other doctors that would give us a different diagnosis. The other doctors tested him for Everything and ended up with the same diagnosis 2 years later. Of course our family has known and close friends have known, but i struggled to get the courage to put it out there for Everyone. Your interview gave me the courage to finally post about it, encouraging people to watch the special. Thank you for being a voice for all of us!
Dear Emma-
I have thought about you many times over the past couple of years. 2 years ago, you provided comfort one night around 2am when I listened to one of your podcasts about ambiguous grief. You are one of the people I have wanted to thank since my husband died with Alzheimer’s. He died by assisted suicide in Switzerland just last April which was my last official day as a caregiver. Since his death, I have learned caregiver grief is not over and I will always be a caregiver. I want to support those caregiving now.
I mistakenly thought I had fully experienced ambiguous grief throughout the last 4 years caring for him, but not by a long shot. I loved it when you said during your interview with Diane Sawyer something along the lines “there is so much of Bruce still here.” I said that all the time about Mike but when he died and I for the first time had only me to think about, I realized how much I had lost the previous 4 plus years. My grief of losing him by death is amplified by the grief I managed to bury every day as a caregiver. I was slowly physically decaying inside and didn’t even know it. I think this is more common than people realize. Caregivers are invisible and the person they are taking care of are often shunned because of the stigma of dementia. It is uncomfortable so people shy away which only places more pressure on the caregiver.
My body fell apart when he died, as if it was saying to me that it could no longer hold me up now that it didn’t have to. Since he died, I have been going from medical specialist to medical specialist, and this is one thing that really breaks my heart for caregivers out there still caring for their person. I had a glimpse that this was happening about a year ago when I had a telehealth appointment with my primary care doctor. He asked me to come to his office for a blood pressure check given (according to his records) my blood pressure had not been checked in over a year. I told him that my blood pressure had been checked numerous times over the past year, and it was fine. He then pressed me to find out where it had been checked and as I thought about it, I realized that it was my husband who had his blood pressure checked and not me.
I found ways to experience joy with Mike, and we had some of our most sweet moments after his diagnosis, but the daily pain of a caregiver is a form of a silent killer that even caregivers are not fully aware of until it is over. I am angered by the stigma that dementia carries in our world, angered by how caregivers and those with dementia are often treated. I am angered by those who try to take advantage of people with dementia and their families. I am grateful for my memories with him from when I was a young girl, memories of the joy when we reunited decades later and even grateful for our many memories after his diagnosis. I am most grateful I could walk beside him and support him during his final walk home. Thank you, Emma, for being one of the people who helped me do just that. Emma, I send you my deepest warmth and support and gratitude. I cannot imagine what this is like for you given you have two beautiful girls. I will be one of those in the crowd cheering for you and please know some of your words are helping me uncover my buried grief I tucked away when Mike was alive, and I am getting my physical health back slowly. My heart goes out to anyone in the middle of this journey. I think even after they die, it turns out to be a lifelong journey and with our love we can collectively support each other.
PS. I don’t know why this is in all caps. I didn’t intend it to be but cannot change it.