Bruce Willis' wife Emma Heming has opened up on how the actor's move to a second home has allowed her to 'get back to being his wife' instead of his carer, amid his battle against frontotemporal dementia.
The Die Hard star, 70, was diagnosed in 2023 with FTD, a condition that affects language and personality, and causes gradual cognitive decline.
He has since stepped back from Hollywood, while Emma has taken on the role of guiding their family through the heartbreaking changes.
The couple have been married for 16 years, and are parents to daughters, Mabel, 13, and Evelyn, 11.
In a new interview with The Sunday Times, Emma opened up on moving Bruce into a separate residence, where he is now supported by a round-the-clock care team as his health declines.
She admitted that moving him into a second home was 'one of the hardest decisions I ever had to make', but was the best choice for the sake of their daughters, and allowed her to take a break from being his carer.
Emma said: 'But among the sadness and discomfort, it was the right move -- for him, for our girls, for me. Ultimately I could get back to being his wife. And that's such a gift.'
Emma added that Bruce was able to gain a bit of independence by living apart, revealing he enjoys a 'dude hangout' with his friends every Friday night.
She explained: 'It's made such a difference for more friends and family to have their own experience with him without it being my home, without me hovering, or my anxiety of how to manage the guest and their expectations, and then have to see their reactions -- their sadness at what is.'
While she said their two daughters have acclimatised to their dad's condition, coming to Bruce's home from school to sit on his lap and run around in the garden.
Emma described: 'You can see the tenderness of it. The girls don't need him to be this or do that. They have really adapted to his disease and they know how to move around him. It's beautiful, but it's hard for them. They miss him.'
And she detailed how her own relationship with Bruce has changed with the progression of his disease, saying they 'now have our own language, our own way to be with each other'.
Last month, in the ABC special Emma and Bruce Willis: The Unexpected Journey, Emma revealed that Bruce had moved into a one-story home better suited to his needs
She said: 'Bruce would want that for our daughters. He would want them to be in a home that was more tailored to their needs, not his needs.'
While she said their two daughters have acclimatised to their dad's condition, coming to Bruce's home from school to sit on his lap and run around in the garden
And she detailed how her own relationship with Bruce has changed with the progression of his disease, saying they 'now have our own language, our own way to be with each other'
He lives there with a full-time care team, while Emma brings their daughters Mabel and Evelyn to visit him 'a lot,' including for breakfast and dinner and their family continues to find ways to spend meaningful time together.
She added: 'When we go over, either we're outside, or we're watching a movie... it's just really about being able to be there, and connect with Bruce.
'It is a house that is filled with love, and warmth, and care, and laughter. And it's been beautiful to see that, to see how many of Bruce’s friends continue to show up for him, and they bring in life, and fun.'
During the Diane Sawyer special, Emma explained: 'Bruce is still very mobile. Bruce is in really great health overall, you know. It's just his brain that is failing him.'
She added: 'We have a way of communicating with him that is just a different, a different way, but I'm grateful. I'm grateful that my husband is still very much here.'
In her new book, The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path, Emma recounts the heartbreaking and life-altering moment she sat her girls down to share the devastating news of Bruce's FTD.
''We've come to a point in Daddy's disease where the care he requires is changing. It has to be more tailored to his every need,' I told them. 'And you should be in a home that is more tailored to your needs now,'' she wrote, per TooFab.
Emma said she tried to soften the blow for Mabel and Evelyn by telling them Bruce’s new residence would simply be their ‘second home.’
She explained that the house was set up as ‘a place they’d keep personal things like toys, arts and crafts supplies, bathing suits, pjs, and games, and that we could go stay with him anytime they wanted.’
Though she admitted the decision was ‘painful,’ Emma emphasized that it reflected what Bruce would have wanted for their family.
‘Even though they’d lived with his disease for so long that they understood, and even though this decision ensures Bruce’s overall well-being and safety and allows our young children to thrive, it was an uncertain and painful time for us,’ she shared.
‘In fact, it’s still painful for me. After all, this is my husband, and having him in another home was not part of the future we’d mapped out together. You really can’t dream this stuff up.’
On Tuesday, Emma defended herself against trolls who had criticised her decision to move the actor out of their family home.
Appearing on Good Morning America, she acknowledged the online judgment, but explained that having Willis live in a second home with a full-time care team ensures his needs are met around the clock, while also protecting their daughters’ wellbeing.
She insisted: '[It] was the safest and best decision -- not just for Bruce, but also for our two young girls. And, you know, it's really not up for a debate.'
Last week, Emma revealed the devastating day she learned her husband was facing a future with dementia (pictured in 2018)
'Now I know that Bruce has the best care 100% of the time. His needs are met 100% of the time, as well as our two young daughters. So I'm not gonna take a vote on that.'
Emma reflected on how caregivers are often unfairly judged, adding: 'Caregivers are so judged, and it just goes to show that people sometimes just have an opinion versus really having the experience.'
The author continued: 'I'll say that dementia plays out differently in every household. If you've seen one case of dementia, it's one case of dementia.
'So you have to do what is right for your family and what is going to keep your loved one safe, as well as your young children.'
She revealed her 'wake-up call' came after a neurologist shared that caregivers often die before their loved ones.
'I'm not a failure because I need help. It's okay for me to raise my hand. I didn't realize that,' she admitted. 'I really needed permission for someone to tell me that it's okay to get help.'
'That's what I hope this book does for caregivers: it gives them permission to care for themselves. Because if they don't, how will they be able to show up and continue to care for the person that they love?' she added.
Last week, Emma revealed the devastating day she learned her husband was facing a future with dementia.
'I'm sure the doctor was explaining what FTD is,[...]I couldn't hear a single thing,' she told People on Friday.
'I had pins and needles going through my body. My ears were wafting. I'm sure he was feeding us information but all I heard was just,'Check back in and here's a pamphlet'.'
While the diagnosis finally explained Bruce's troubling behavioral changes, Emma says she was left shaken by the lack of direction or support.
'I was grateful to get to a diagnosis,but there is no cure for this disease,and being sent on our way with no support,no nothing was really traumatic,'she admitted.
'It's not just happening to us.This is how many people are receiving their diagnosis.'
Like millions of Americans facing dementia in their families,Emma found herself without a clear path forward after Bruce's diagnosis.
With little guidance from doctors,she turned to her own research admitting:'I ended up searching the web to figure out what to do.'
That period,she recalls,wason profoundly isolatingand'bleak',explaining:'Early on,lifefelt very dark,very one-noteofjustgriefandsadness'.
As the primary caregiver,Emma says she felt overwhelmed--balancingBruce’sneeds,safeguardinghisprivacy,andraisingtheirtwoyoungdaughterslargelyonherown.
Eventually,she begancarvingoutawayforward.She leanedonmedicalexperts,connectedwithothersinsimilarsituations,andfoundasenseofpurposeinspeakingout.
'Early on I wastoo scaredtosayanythingtoanyone.Itfelt likewhathappeningwasonlyhappeningto us,'shesaid.
'Irealizeditwouldbebeneficialtotalkaboutitandraiseawarenesssopeopleget tothedoctorsooner,candiagnosedsooner,getintoclinicaltrials.'
That hard-wonperspectivehasnowshapedhernewbook,TheUnexpectedJourney,writtenasaguideforfamiliesnavigatingneurodegenerative disease.
'I wrote the bookthatI wishsomeonehadhandedmeonthedaywereceivedthediagnosis,'sheexplained.
'Caregivingishard,andtherearemanypeopledoingitwithlittletonosupport...TheonlywayIcangetthroughthisistohelpsomeoneelsefeellessalone.'
HerremarkscomeafterafamilyinsiderinformedtheDailyMailthatBruceis'goingdownhillfast'tothepointhe'doesn'tknowsomefaces'anymore.
Bruce'sblendedfamilyhasralliedaroundhimamidhisillness,includingingex-wifeDemiMooreandtheirdaughtersRumer,37,Scout,34,andTallulah,31(seen).
TheDailyMailsource saidBruce’sdaughtersare'allspendingasmuchtimewithhim as theycan,'adding:'Helightsupwhenheseeshischildren.'