Emma Heming Willis has been nothing if not heartbreakingly candid in the nearly two years she’s been caring for her husband in his dementia. Bruce Willis was diagnosed with Aphasia in 2022, and his condition progressed to Frontotemporal Dementia early in 2023. While she clearly does not naturally seek the spotlight, being Bruce’s care partner has compelled Emma to publicly advocate for FTD awareness and the families affected by the disease. In yet another instance of empathy and searing honesty, Emma penned a letter for Maria Shriver’s Sunday Paper, in which she shared lessons she’s learned during this time. She also acknowledged the guilt she feels over having resources other families don’t:
Lesson No. 5: There is power in giving back. Recently, I met someone who had just learned about FTD in her life. When I first learned about the condition, I didn’t have someone in my corner who understood this experience. The fact that I was able to help connect this woman to the right information and resources was a moment I won’t forget. Even though I can’t change her situation, I can help guide her, tell her where to start, and help her feel a little less lonely.
I struggle with guilt, knowing that I have resources that others don’t. When I’m able to get out for a hike to clear my head, it’s not lost on me that not all care partners can do that. When what I share about our family’s journey gets press attention, I know that there are many thousands of untold, unheard stories, each of them deserving of compassion and concern. At the same time, I see that what I share matters to others who may be struggling, and in a small way makes them feel seen and understood. I want people to know that when I hear from another family affected by FTD, I hear our family’s same story of grief, loss, and immense sadness echoed in theirs. It’s important to me to be an advocate on behalf of those families who don’t have the time, energy, or resources to advocate for themselves.
[From Maria Shriver’s Sunday Paper via Just Jared]
It is refreshing to have a celebrity acknowledge their privilege and really mean it. Nothing about Emma’s language feels like prescribed PR lingo. It’s about as far from that as you can get. I just want to give her the biggest hug! Her pain is real and it is valid. In a more perfect world, the focus would be not on resenting those who have more resources, but on figuring out how to make those resources available to everyone. I believe Emma is trying to do just that — to give back to the community that has given her strength, in ways that she can. And all while still caring for her husband. (LaineyGossip had a thoughtful piece yesterday on this topic, discussing Michael J. Fox and Tracy Pollan.)
I thoroughly recommend reading Emma’s piece in full. She organizes her thoughts into six main lessons she’s learned, the connecting thread being: talk about what you’re going through and find your community. They are vital lifelines. She ends with saying “As much as I grieve this experience daily — as I know so many others do — I also know that it has made me stronger than I ever thought possible.” Oh, yes. Whatever your specific hurdle is, life has a way of making you discover your own strength. I have no doubt that Bruce is proud of her for that.
I can imagine feeling guilty in her shoes too, when she really shouldn’t. That’s just life, it’s really crazy what can happen. She’s “lucky” to have resources but so unlucky that the man she loves has this degenerative diagnosis. I can’t imagine the pain. Bruce is very fortunate to have her, and the way the whole family has stayed close, it’s really just a wonderful thing for them to have while getting through this
Bruce Willis is one lucky man! He has had the opportunity to meet and marry two extraordinary women…. There are those who can’t even meet one, yet the guy had lucked out twice. Good for him and I wish him and his family all the best
I understand where she’s coming from. Although a completely different circumstance, and of course means, I am able to send my dyslexic son to a ridiculously expensive specialized school while others struggle to understand why their child can’t’ read. My parents are a huge help financially, but it makes me so upset that the type of education my child gets can’t be offered to every student who needs a program like his.
Caregiving for a loved one can be so so hard in any circumstance. And doing so when you know things are just going to get worse is doubly so.
That Lainey article about the Pollan-Fox marriage, and the health risks of caring for a spouse was very good. Though she mentions women without a celebrity’s resources for outside assistance are more at risk, it made me think of Dana Reeve, Christopher’s wife, who was diagnosed with cancer less than a year after his death and died less than a year later at 44. Stress, caregiving, putting the needs of others first can take a tool even in the “best of circumstances”. And in these cases it’s all paired with the disability/loss of a life partner.
I will never forgive the people who went to Emma’s IG page and called her spoiled when she 1st spoke about what is happening with Bruce. Emma then turned around and said, you gonna see more of me now so I can help others. Those trolls gave the wife of a famous actor a platform for right.
I’m proud that she has the strength to continue on with this discussion and looking to help other caregivers who are less fortunate.
I just read Lainey’s piece about caregiving. I had to take care of my boyfriend after he had a heart attack earlier this year, while still working (I’m the only support for my kids) and taking care of my teen daughter. I basically had a non stop panic attack for three months. It made me think of the supposed stat that married men live longer than single men, and married women die earlier than single women. I love my boyfriend but as an eldest daughter I took care of my family throughout my childhood (alcoholic parent, divorce, etc.) And then took care of my now ex and my kids – both financially and as primary caregiver. I really don’t want to spend my entire life as a caregiver. My boyfriend now has another chronic problem – all of this brought on by his unhealthy life choices that I’ve “nagged” him about for a decade – and I’m really wondering what to do. Of course, like most women, I’m far too loyal and don’t want to quit things, even in the face of adversity. But I’ve spent 50 years as a caregiver and I’m really getting burnt out.
I’m so sorry that you are going through this. 50 years as a caregiver is A LOT.
Thanks.
I’m so sorry — I know the feeling of the disconnect when you watch your spouse do exactly the opposite of what is healthy and then something like a heart attack takes place.
It’s so disheartening to watch, and it feels like being put in the worst possible position. Even if it isn’t on purpose, their unwillingness to change affects your life, and in some ways much more so than theirs.
I get it.
I highly respect her for acknowledging that she is in a place of privilege. At the same time, of course she is going to use all of the resources she can to make sure her husband can live the best life possible, even if others unfortunately don’t have them.
It’s good to see someone acknowledge their privilege but I hate that she feels guilty about it. It’s not that she has too much, the problem is that there are not enough affordable in-home care options for people in this country. The average person is stuck with a decision to put their loved ones in a nursing facility or stay with them 💯 with virtually no nursing training. Our healthcare system is so f*ed up.
100% agree. She shouldn’t feel guilt on top of every other emotion she’s going through because our society and system regularly lets people down in general. I’m glad she’s working as an advocate in her awareness though. And, when the sad day eventually comes, I can see it being her dedication.
Theres something deeply humbling about caring for a loved one with a chronic illness that really shows you whats important and shines a light one how lucky some of us are. That luck comes in many forms. Im sorry for his illness but his family is a real blessing to Bruce; i wish them all love.
As far as I’m concerned Bruce’s wife Emma, his daughters and yes the ex Demi have exploited the man for money when he should have been protected. Look at his last movies, he’s clearly out of it. You can never convince me they didn’t know how bad his disease was. It’s disgusting they made him work when he wasn’t capable of making good decisions. It was wrong, wrong wrong. So skip me with all the saintly praises for his shit family who betrayed his acting legacy. If the family needed money so badly each one of them needed to get themselves jobs and let the man be in peace.
Your response sounds like someone who has perhaps had very different experiences from my own in navigating the emotional—and sometimes physical — challenges of telling an adult that they can no longer do what they’ve “always” done, and somehow physically enforcing this when they grab the car keys or push you out of the way, all while possibly yelling that as an adult, you have no right to impede them.
If I’m wrong in my assumptions, please, please tell the rest of us how it’s done. I, for one, would greatly appreciate it.
I’d also appreciate your input re : your last comment about letting the man “be in peace”. I ask this as someone who has spent quite a bit of time supporting, advocating for, and actually caring for adult family members — who needed assistance 24-7 at some points as their judgement and abilities declined. Caring is often not compatible with work, particularly work that lacks flexibility, and that doesn’t come with the kind of paycheck that covers a roster of people to provide the around the clock care and crisis intervention that caring for someone can often require.
Again, my question is a serious one. I did the best that I knew how to do — alone — in multiple crisis situations— with finances that could support some help, and some knowledge of working with health care institutions. My own health, employment, finances, and overall well-being have taken serious and probably permanent hits because I prioritized care-giving responsibilities over alternatives that seemed unspeakable. @Southern Fried, perhaps you have some helpful templates for dealing with similar situations.
This type of help will be needed even more urgently in the future as of adult children, often from relatively small families, often with relatively small incomes and resources, will struggle to navigate care for members of non-traditional families.
I spoke only of Bruce’s situation. He has 3 grown daughters, a wife and ex wife that were all capable of helping him one way or another rather than force him to work on several movies when he was incapable of making good decisions. That’s at least 5 adults that we know of to handle his needs. I can’t imagine Bruce or any other suffering person wanting to be humiliated in front of entire movie casts and supports like he must have been. It’s so sad and completely unnecessary. They themselves want compassion but where was theirs for Bruce? His manager is a shit human also if he gave in to this family’s unreasonable demands for money. Just watch the last of his movies and it’s obvious Bruce is ill.
My husband has been having some very severe health issues. We’ve been waiting to see a neurologist for an actual diagnosis for months and won’t get to until late January. I think he’s been having problems for a very long time actually, but it’s become so severe that it’s finally visible to everyone else. I’ve been saying for years that something was wrong and he needed to get help. He’s been grumpy, tired, and basically useless around the house for the last 8 years leaving the burden on me. It was such a slow rollout that I didn’t even realize my husband was morphing into the complete opposite of who I married. I was on the verge of divorce simply because he wouldn’t see that something was wrong and get help for it. Now I can’t because he literally can’t care for himself. It’s not FTD, but it is potentially a life changing illness and it is so hard. I don’t have anywhere close to Emma’s resources, but I’m luckier than most and I am struggling so hard right now. I’m grieving for my husband and frankly, for myself. I’m only 40, healthy, finally have an expendible income, and my kids are finally easy, and I am so stuck. Basically, I feel for anyone who has become a young caretaker no matter what their circumstances.
I am so sorry you’re going through this. It seems criminal you haven’t been able to get into an appointment sooner. Your story is also a lesson in paying attention to the person closest to the one struggling. Sending you much love.
I am so glad she acknowledged she had resources others don’t. As someone caring for a frail 99 yo mother whose care went far beyond my means months ago, I gave up my job a year ago to help her in hospice and…she is still alive, with no real end in sight, and the stress financially, mentally, and emotionally is overwhelming at times. But the financial stress is the worst–because without it, I could hire more care. I have support of friends and professionals–but caregiving an elder or sick loved one is the loneliest job in the world. It is just a tumble into the darkness with no light at the end of a tunnel. Seeing a loved one in fear and anxiety but also at times abusive and angry is a struggle I wish on no one. Nor is the financial burden, which can decimate your own future. I am at the point where I wish only for my mother’s end of life. I appreciate also Michael J Fox’ crusade against Parkinson’s, which is a terrible disease. But I admit I am jealous and get a bit angry when he calls it a “gift”. I understand where he is coming from–he has been able to help so many people with his fundraising and awareness and that IS a gift. For those without financial resources and burdened by constant misery of another person’s condition it is life-changing.