In March of last year Bruce Willis’ family shared he was retiring from acting due to his diagnosis of aphasia, a neurological condition. Then earlier this year, the Willis clan updated his fans that his condition had progressed to frontotemporal dementia. With both announcements it was notable that the statements were from the family, not directly from Bruce. It wasn’t entirely surprising, given that both aphasia and FTD have symptoms of speech and communication difficulties, as well as potential emotional instability and loss of motor skills. The fact that Bruce wasn’t speaking for himself seemed to indicate the extent to which he was already dependent on caretaking.
Throughout his diagnosis (which likely began long before it was made public), his chief caretaker has been his wife of 14 years, Emma Heming. In an Instagram post on Monday, Emma briefly yet impactfully shared that she’s “not good,” but making a daily choice to break up the doom and gloom outlook that befalls caretakers. More on what Emma called her care partner PSA:
Bruce Willis’ wife, Emma Hemming Willis, is providing an update on how she’s doing amid her husband’s current health situation.
The former model has served as the actor’s caregiver since his frontotemporal dementia diagnosis, which was publicly revealed by his family in February.
In a new Instagram video, the Make Time Wellness founder tearfully sent a message to fellow “care partners,” letting it be known that although she may look like she’s handling it all well, it’s nowhere near easy.
The 45-year-old started the clip by addressing why it is she previously asked people in a position similar to hers to send her photos of “something beautiful,” which, she noted, are making her “so happy.”
“I just think it’s so important for us to sort of break up our thinking, which can feel, for me, very much like doom and gloom,” she admitted.
“I know it looks like I’m out living my best life. I have to make a conscious effort every single day to live the best life that I can,” she said, adding that it’s not only for herself, but for her and the Red star’s two children, and for “Bruce, who would not want me to live any other way.”
She furthered her transparent message by explaining, “I don’t want it to be misconstrued that I’m good, because I’m not. I’m not good, but I have to put my best foot forward for the sake of myself and my family.”
The pair wed in 2009, later welcoming daughters Mabel Ray, 11, and Evelyn Penn, 9.
In the caption of the August 14 social media post, the Malta-born entrepreneur made her intentions for the update clear.
“This is a care partner PSA. My message is simple. When we are not looking after ourselves, we are no good to the people we love who we want to show up for and take care of,” she wrote in the caption of the upload.
Heming Willis continued: “I don’t have this down to a fine-science either, but I try. It’s an affirmation I use daily so it’s kept in the forefront of my mind. Your pictures, words of support and love for me and my family were felt. Honestly, thank you, it helps. I ask that you’ll consider to keep looking for that one beautiful thing or moment in your day. And I hope you can take me seriously in my dopey hat.”
Bitches, this one really hit me in the gut. I’ve shared a little bit here on watching my mother be caretaker for my father after his stroke. She’s been on duty full time since he came home from the hospital and rehab four months ago. Last week he had to go back to the hospital. As awful as it may sound, my initial thought was of relief for my mother. Without meaning any disrespect towards my father—or Bruce, or any ill person—I have been much more worried about my mother throughout this whole period. I think of it as every emotion, everywhere, all at once. There’s heartbreak in seeing your partner in pain, fading away, and losing their dignity. There’s also, equally justified, anger and resentment with the situation (even sometimes directed at the ill partner). That in turn is often followed by guilt, playing out in an endless vicious cycle. I’ve seen all this in my mother over the past nine months. It’s just so much to bear.
Out of everything in the post, I appreciate most that Emma honestly says she is “not good.” She has two young daughters who are witnessing the decline of their father. I bet Emma is concerned everyday about how they are processing this moment. How much do you let them spend all the time they can with their father, versus how much do you try to protect them in their childhood?
I think she’s doing a mitzvah by reaching out like this to fellow care partners. It is so easy to get stuck in doom and gloom, and in my experience it’s usually an outside stimulus that helps me let go of the negative loop. Whether it’s sharing beautiful photos like Emma requested, sharing stories, or sharing an adorably dopey hat, it’s the connecting itself that helps. Sending my very best thoughts to Emma, Bruce, and their family.
Photos credit: CPA, PacificCoastNews / Avalon, Media Punch/INSTARimages.com, Media Punch/INSTARimages.com, Getty and via Instagraam
She likely looks in his eyes and he looks back with no recognition. He doesn’t know her anymore, and that’s got to be devastating. He’s a stranger to her every day. Their kids too. It’s got to be soul crushing. On top of that, she does for him and caters to all his needs. It’s not even a full-time job, it’s ceaseless. It’s nonstop, 24/7, no vacation. And she’s mourning every hour, every minute, every second, and what she’s mourning is right in front of her face at all times. It’s brutal.
I was my mother’s full time caretaker. She lived with dementia for ten years before she died. This right here is the most perfect description of taking care of someone who suffers from dementia. The worst part may be that when your loved one does die, all you can feel is relief. Then, guilt. It sucks. Thanks for this, That’snotokay.
I hope you have lovely memories that predate the dementia. No guilt.
Thank you, Kirk. Time does heal. 💔❤️🩹
This – my mother died of vascular dementia (brought on by a series of mini strokes) and when she passed I felt relieved that she was free and no longer a prisoner in he own body. I also then felt instantly guilty for thinking that.
I take comfort knowing that she led a good life and her family were always there for her.
Can I come sit with all of you? I was my father’s caretaker for 7 exhausting years. I loved him deeply, but those years were unceasingly difficult. I also had the crushing guilt over my relief when he died. I was just so tired.
Love to @Brassy Rebel, @Digital Unicorn, snd @Giddy
this is correct. With primary progressive aphasia, he likely can’t speak at all, maybe a few grunts and hollers, but that’s about it. and the FTD part means inhibitions are gone, so the affected person is frequently incontinent, takes off clothing and diapers, breaks things, hits, kicks and bites, and is generally very very difficult to be around.
it’s an incredibly cruel disease, almost unendurable for the caregivers.
this is such a good description of what dementia/loss of memory/brain function does to people. It is devastating and heartbreaking and just awful for all.
The sad thing is she isn’t coded into his long term memory, and neither are their girls and I can only imagine their pain. The Girls with Demi he will remember longer but will forget them too. My husband’s mother thought he was her brother come the end. She was most attached in the end to her husband but though him to be her father. It was so very hard to watch a family lose their mother/wife and grieve her while she was still living.
Yeah, feeling guilt after relief with long term caretaking is normal. But we aren’t relieved that they’re dead–we’re relieved that their suffering is over, that our suffering is over, that all our helpers and family’s suffering is over. There’s nothing wrong with that. When someone has a long-term illness we do our grieving on the front-end, as we lose them bit by bit every day, for years. Relief is just another valid feeling, and we’re not doing anything wrong when we feel it. The guilt is normal, it’s just that we aren’t doing anything actually wrong.
I really feel for her and everyone who is or has been in this position. The fact that she uses the term ‘would’ when talking about Bruce and what he would want suggests he may already have limited ability to communicate with her. I can’t imagine how you navigate this and parent two children, even with help and support.
I spoke to a colleague this morning who was with a close friend of hers when the friend died last Thursday. She said she’s having a bit of an existential crisis as while it was peaceful and time for her friend to go, seeing someone take their last breath has affected her profoundly.
We take so much for granted every day and while we can’t live if we’re constantly thinking about what might happen, it’s important to take time to appreciate what we have.
When I was caring for my critically ill ex husband in 2009-2010, I had never felt so alone. Even after he recovered from the illness, the long term effects turned me into a permanent caretaker to him. It was exhausting, debilitating and caused long term damage.
We don’t talk about the toll being a defacto nurse/mother/personal support worker can take and how more support is needed to get us through these experiences. The spouse often holds the sky up and that’s too much to ask of one person, even if it’s done in love.
And FTD carries its own difficulties. I’ve known a few people to have it and honestly I don’t know how their partners cared for them as long as they did.
I feel it too. I was a caregiver for many years many long years, then I volunteered for people who didn’t have family carers to help out. Now I’m in a rehab situation myself. It’s agonising and frustrating. No one is my carer.. Yet. They are lucky that, even in the worst situation, they can pay for 24/7 care. It’s still not easy but better than most. Caring is 24/7 job. The things I’ve seen over the years, eg a friend’s mother died on a toilet seat in a care home because she was left there for a day. That’s why I volunteered, to help those who didn’t have family around. Now I’m scared for my well being. Anyway, rehab now the future is to be determined. Thinking of Bruce’s family.
Wishing you the best Old Chick! I’ve been a nurse for many many years and I feel your pain. I hope neither of us ever have to have care givers! I thank God for them, but I hope to be independent til the day I leave this planet🙏🏼
Thank you for your kind words nlopez! I need help for some things now, driving, cleaning, heavy stuff. But I’ll see what happens when I’m out of rehab. Crossing. 🤞🤞🤞For both of us
I was my grandfather’s caregiver when his dementia set in, while he was still lucid during the day. Eventually he did move to an Alzheimer’s unit near my aunt. But he did have a last summer at home.
But good on this blended family for sticking together. I have several friends where their father’s second wife is an incompetent caregiver and also freezes out the adult daughters who want to help. Removing them from the list of people the hospital can give information to type of stuff. Will they be good caregivers seems to be a consideration for a first marriage, but too often ignored when having an affair.
All props to her and the other caregivers.
Thank you for this, AGREED. I was my Grandpa’s caregiver, after Alzheimer’s made him into a person who was angry, other than his utter kindness in his real life.
I am in awe of the extended Willis family, including Demi. They are telling the truth, no matter how horrific the truth may be. He’s a lucky man, he has a tribe of women who are going to stick with him until the end. We should all hope to be this lucky.
As someone with a parent with dementia, Bruce’s diagnosis hit me hard. My mother is not in the advanced stages (she still has significant memory loss and personality changes) but dealing with a loved one with a degenerative disease is HARD. Sending all my best wishes to Emma and her and Bruce’s daughters.
He does have a male attendant who has been photographed with him, so she has some time to herself at least. Shower, go get hair done but as his wife she is still 100% responsible and carries that burden.
Wow it sounds really tough. I have read that his older daughters and Demi also help out. I don’t know how much time they are actually there though. Ultimately it falls on Emma’s shoulders and even with help it’s a lot. I loved Bruce’s wise cracking characters especially in Moonlighting.
+1 for Moonlighting
caregiving is truly the most harrowing life experience.
i cared for my own grandma as she slowly deteriorated, physically and mentally, for months before she passed last year. i am so traumatised by the experience of having watched helplessly as someone i loved so dearly, who had been a core part of my life, and a mother to me since mine died when i was a child, slip away.
i still dream of her nearly every week since she died, and i cry in the middle of the night sometimes.
sigh…
sending love to everyone in the comments with their own tragic stories, including you kaiser.
🖤🖤🖤
I’d consult psychologists to help the right balance for his young girls. My mom was chronically ill and I became her therapist around 12-13 years old. My therapist labeled it parentification.. I was just a kid and my mom would tell me ab really, heavy grownup issues, how she was dying and have severe mood swings. My dad was a primary caregiver. I give him credit. It was overwhelming but he enabled me to take on trying to be her counselor to aid him in managing her moods while he helped manage her health. I grew up in a manner where I put myself last always, was a people pleaser, broke up w someone I loved bc my mom said he wasn’t good looking enough for her taste, then had poor inter relationships w partners and was always trying to make everyone happy. I couldn’t regulate my emotions and even experienced eating disorders behavior to calm myself when coping I also feared conflict and would get anxious. My own health suffered. My dad went on to become a secret alcoholic and addicted to opioids. Caretakers and children need resources and support the entire way. I wonder how things would be different if we had new it. Hugs to Emma and family.
So many heartbreaking stories shared by so many people. I was my mother’s caretaker through a nine year battle with cancer. It’s hard enough when the person in your care remembers who you are till the end.
I totally understand the relief one feels when a parent, grandparent, etc is finally released from their pain and bewilderment. It’s not just for them. The guilt is almost unbearable.
Big hugs for everyone who shared their stories.
Bruce is 23 years older than her and they had their second daughter together when he was almost 60.
So many women who marry older men end up spend their middle years as caretakers to elderly spouses. Know what you are getting yourself into.
It’s a terrible disease. Degenerative ones are like losing a little part of your loved one every day.
I may get lambasted for this but I feel sorry for his younger daughters who are too young to lose a parent. I know men can have children until their 60s but this should be a warning to those parents. He was in his 57 and 59 when he had his younger two daughters.
Hospice Wives! It’s a thing. Poor women.
It’s stories like these, and many, many others that make terrified of what my later years might look like. I have no immediate family and wouldn’t want to a burden even if I did. It would be a great comfort to me to have the option of medically assisted suicide should I want it. I’m not taking when I’m sick. I mean whenever I decide that I’m done with life and then having the time to get my affairs in order and end my life with dignity on the day of my choosing.
I hear you, LaDeeDah…SAME!!! I am now my mother’s caregiver and she has dementia with aphasia. So, that means she can’t really talk or communicate much AND she has dementia. The hardest thing I’ve ever done, soul-sucking, sad, slow, constant grief, guilt, struggle, exhaustion, mixed with love and obligation and care. And HER mother had dementia, so things are not looking great for me when I stare into the crystal ball of old age. What to do?
Remember Christopher Reeves? He had a horseback riding accident and became paralyzed, his wife was his caregiver. When he died I remember being relieved for her that she can now have her life back. A few months later she was diagnosed with cancer and shortly afterwards died. Caregivers need to look after themselves.
@Athena agree that caregivers need to practice self-care. But to be fair, Dana Reeves died two years later after Christopher Reeves. She died of lung cancer and never smoked a day in her life. Self-care wouldn’t have stopped it from happening. It was just one of those random things that happen. It’s a medical mystery about one in five women who get lung cancer have never smoked.
Never had strong opinions about Emma before. She is a lot younger than him, which invites that crappy gold digger label, but she was also an adult when they got together and they’ve been married a long time now and have kids together. She also has never seemed interested in fame or celebrity, and outside of publicly disclosing Bruce’s condition along with Demi and his elder daughters (which I think was a great move and reflected their shared solidarity), she seems to largely avoid the spotlight.
Since all this news has come out, it has become very clear that Emma is a stabilizing force in the Willis-Moore family and they’re all lucky to have her, and that she does handle the bulk of Bruce’s daily needs. My heart goes out to her because what she’s living with now must be tremendously difficult. She’s not just a caretaker now either—she’s still a mom, but now she’s essentially a single mother to two little girls who are watching their father deteriorate in this condition and that must be brutal for them. Hope she is able to find peace and joy where she can because she sure does deserve it.
As a caregiver myself, this made me cry. I’m not good either, but I’m doing my best at any given moment. God bless everyone in this sad role.
Reading between the lines, it sounds as though she’s been spotted out and about socialising and has perhaps been unfairly criticised for it?
She’s very much emphasising that people may think she’s having a good time but she’s not.
Although I’m sure they have an army of staff in their household, it still must be difficult to cope with your husband having dementia. She was 29 when she met him and he was 52. It’s probably hard to look ahead to the elderly years at that stage. Their daughters will never know him and he probably doesn’t know who they are already.