Emma Heming Willis: The Downfalls Of Suddenly Having To Become A Full-Time Caregiver To Your Partner – And All The Reasons Why You Should Never Forget About Self-Care In Your Caregiving Journey.

Emma Heming Willis recently opened up to People magazine about the downfall she faced in being a caregiver to her husband, Bruce Willis. Willis is, of course the legendary actor that dominated movie theatres in the 90’s and 2000’s with movies like Die Hard, Pulp Fiction, and The Whole Nine Yards. He officially retired in 2022 after being diagnosed with frontotemporal dementia. At the time, his family released the following statement, ‘Unfortunately, challenges with communication are just one symptom of the disease Bruce faces. While this is painful, it is a relief to finally have a clear diagnosis. We know in our hearts that — if he could today — he would want to respond by bringing global attention and a connectedness with those who are also dealing with this debilitating disease and how it impacts so many individuals and their families. Bruce has always found joy in life — and has helped everyone he knows to do the same. It has meant the world to see that sense of care echoed back to him and to all of us. We have been so moved by the love you have all shared for our dear husband, father and friend during this difficult time. Your continued compassion, understanding, and respect will enable us to help Bruce live as full a life as possible.’

And now, 3 years later, Willis’ wife said, ‘We received a diagnosis and sent away with no hope, no guidance, no nothing, and I really had to figure out how to put resources into place. And it was a lot of searching the Internet, trying to figure things out. I think that was my downfall. I thought that that’s what I was supposed to do. What I’ve learned in all of this is that the most important person is the caregiver. We have to care for the caregiver, because when we care for ourselves, we can then show up for the person that we love.’ And after his diagnosis, Heming became an advocate and an ally from caregivers everywhere. She’s releasing a book, The Unexpected Journey: Finding Strength, Hope and Yourself on the Caregiving Path, out in September. In the book, she’ll chronicle her own experiences as a caregiver to Willis. She said, ‘It’s the book that I still need. For me, it’s like I’m not at the end of this journey. I’m in the midst of it. I love it for myself as my own kind of personal roadmap. It’s really helped me. And the hope is that it will help someone else. My hope is that one day, when a neurologist diagnoses someone with dementia, that is the roadmap that they put in this new caregiver’s hands. One of the most important and surprising truths I learned while writing the book, and something echoed by 25 experts and specialists I interviewed for it, was this: The best thing that you can do for the person that you love is take care of yourself. Why? Because the ecosystem of care doesn’t work unless the caregiver is cared for.’

This is a book I wish I had when I was my husband’s caretaker when he was ill. It was such a confusing time for me. I watched the person I loved most become someone I didn’t even recognize, and there was absolutely nothing I could do to make things better for him. It was heartbreaking. But it was funny; cosmic, in a sense. In my father-in-law’s many, many arguments as to why he shouldn’t be with someone like me, a cripple, he was adamant that my husband would be a caretaker because someone like me couldn’t possibly be capable of taking care of herself and even gave the slightest of independence. In his eyes, I’d never be good enough for him. But in reality, it turned out the other way around. I became the caretaker to his son. His son became the person that he described me to be as. And yet, it never crossed my mind to leave him. No matter how many times my husband told me to leave him in his time of struggle because I deserved better, I never left him; not because of his illness anyway. I would’ve never given up what I shared with him in the face of an illness. I could never abandon him. My husband wouldn’t leave me either. He didn’t.

Let’s be clear about one thing, however. It’s perfectly ok to leave a person who’s ill. You’re not responsible for them. You are, however, responsible for yourself and your own happiness. You deserve someone who will live life with you, and that’s if it’s not what you feel you have right now, then you should, in fact, leave the relationship. It’s most definitely a complex thing to even remotely consider, and the decision one makes for themselves depends on the specific circumstances. While ending a relationship due to a partner’s illness is a difficult decision to make, it’s not always inherently wrong. Factors like the severity and chronicity of the illness, the impact on the relationship, and the level of support available are all crucial considerations. To look at the matter more thoroughly:

When it might be acceptable to leave: 

• Severe, debilitating illness: If the illness is life-threatening, chronic, and significantly impacting the relationship in a negative way, it can be a valid reason to leave. 
• Lack of support: If your partner is unwilling to seek help or is not actively engaging in their treatment, and it negatively impacts the relationship, it might be time to consider ending it. 
• Unhealthy relationship dynamics: If the illness has led to a situation where your safety or well-being is compromised, it’s crucial to prioritize your health and leave. 
• Chronic illness and burnout: Caregiving for someone with a chronic illness can be exhausting, and if you’re struggling to cope and the relationship isn’t healthy, it’s okay to seek a more fulfilling life. 

When it might not be acceptable: 

• Short-term illness or recovery: If the illness is temporary or manageable with support, leaving may not be the best approach. 
• Neglecting responsibility: Leaving solely because it’s difficult, without addressing the underlying issues or trying to find solutions, could be seen as irresponsible. 
• Using illness as an excuse: If the illness is not the primary cause of the problems, but rather a symptom of a larger relationship issue, leaving might not address the core problems. 

Considerations before making a decision: 

• Open communication: Talk to your partner about your feelings, concerns, and the impact of the illness on the relationship. 
• Seek support: Consider talking to a therapist or counselor to help navigate the situation and make informed decisions. 
• Explore alternative solutions: Before ending the relationship, explore options like seeking therapy, finding additional support systems, or adjusting your roles within the relationship. 

Studies show that marriages are more likely to end when the wife becomes ill than when the husband does. This gender disparity in partner abandonment is significant, with women being six to seven times more likely to be left than men when diagnosed with a serious illness. Research indicates that female gender is a strong predictor of partner abandonment in patients with serious medical illness. And maybe this particular blog post I’m sharing isn’t equipped enough to be of relevance because I’m discussing a woman who didn’t leave her male ill partner. And nevertheless, for one reason or another, I feel like this topic must be discussed. But no matter who is the one ill and who is the caretaker, the effects of the illness on a relationship is simply put, heavy.

In most cases, when a situation arises between two people in a relationship when one person becomes ill, all eyes are on the person that’s affiliated with the illness. When someone becomes ill, the focus understandably shifts to their health and well-being. This can lead to the caregiver’s needs, particularly ones that have to do with their mental health, being overlooked or forgotten.  Caregivers often put the sick person’s needs first, leading to their own emotional, physical, and social well-being being neglected. This can lead to burnout and stress. Suddenly becoming a caretaker most certainly put a strain on my own well-being. I didn’t sign up for the role when I started dating my husband. He was as healthy as a cucumber when I met him. Overnight, he became a person I didn’t recognize, and with that, I became more able-bodied than him.

The first years of my husband’s illness were similar to how Heming described her own first years; except we didn’t even have a diagnosis. I didn’t have anything to google to understand his symptoms. All the information I had was that my husband was struggling and I needed to be there for him to support his needs – physical and emotional. My world was shattered. It completely changed me. My husband’s illness not only took over him, but me as well. And yet, when outsiders saw us together, they only saw him struggling. No one cared to ask me how I was doing in the whole situation. This fact about us going through his illness hurt me. It was my husband’s fault. It was anyone else’s fault. That’s just how the world works. But the fact of the matter is, becoming a caregiver can be emotionally taxing, leading to feelings of stress, burnout, and even a “love-hate” relationship dynamic. 

I think that was what my father-in-law’s entire point was about my husband potentially having to become my caretaker because of me having cerebral palsy. He just didn’t say it in those words. His words were hostile and volatile, and it showed just how little he knew about cerebral palsy as a whole and my own personal condition living with the disability. He was adamant that I’d end up in a wheelchair by the age of 40. I’m not there yet. I’m not 40 yet, and I’m not in a wheelchair. I work out every single morning for an hour taking 5,000 steps, and then I take long walks later in the day. I’m in a much better physical shape than he’s in, that’s for sure. It’s just funny how life turned out for us. It’s funny that his son was the one who turned out the incapable one in our relationship.

I wouldn’t trade my experiences as caretaker and the hardships that came with it even if my life depended on it. My husband gave me a choice and I didn’t take up on it. I knew that the person that was once there would come back to me eventually. Being a caretaker to your partner is much harder than being ill yourself, and I know because I became ill myself after years of being a caretaker to my husband. As soon as my husband’s condition was getting better, mine worsened. My condition never got to the point where my husband needed to turn his whole life upside down to take care of me. But in my years of having to live my new normal and suffer from a seizure disorder and depression thereafter, my husband became my biggest advocate and supporter. I didn’t even think it was possible. He was there at every doctor’s appointment. He was there speaking on my behalf when I felt I couldn’t for one reason or another. He was this constant presence in my journey to getting my health back, even when he really didn’t have to. It didn’t come easy for either one of us. That being said, the mental health and well-being of caregivers is crucial. These two factors alone directly impacts their ability to provide effective care and their own well-being. Neglecting caregiver mental health can lead to burnout, stress, and even physical health problems, potentially hindering the care they provide and negatively affecting their quality of life. Here’s an elaborate look as to why it’s so important:

• Impact on Care Quality: When caregivers experience burnout or stress, their ability to provide consistent, high-quality care can be compromised. They may become overwhelmed, emotionally detached, or less patient, potentially leading to negative outcomes for the person they are caring for. 
• Increased Risk of Physical and Mental Health Issues: Caregiving can be emotionally and physically demanding, leading to stress, anxiety, depression, and even physical ailments like high blood pressure or weakened immune systems. 
• Social Isolation and Financial Strain: Caregiving can isolate individuals from their social networks and place a financial burden on them, further contributing to stress and mental health challenges. 
• Caregiver Burnout: The relentless demands of caregiving can lead to caregiver burnout, a state of emotional, physical, and mental exhaustion. Burnout can manifest in symptoms like cynicism, decreased motivation, and feelings of helplessness, impacting both the caregiver and the person they care for. 
• Need for Respite and Support: Caregivers need access to respite care and support services to help manage their stress, maintain their own well-being, and prevent burnout. 
• Impact on the Care Recipient: Caregiver stress can have a negative impact on the person they are caring for, potentially leading to a decline in their functional status or premature admission to a long-term care facility. 
• Need for Systemic Support: Addressing caregiver mental health requires a systemic approach, including providing resources, education, and support to caregivers, as well as recognizing and valuing their important role. 

It’s important to realize that Emma Heming Wills as a whole village behind her to help out. She has Bruce Willis’ ex-wife Demi Moore, who’s still very much involved in Willis’ wife as a friend and mother of his children. They have 3 daughters together – Rumer, Scout, and Tallulah. They’re also heavily involved in Willis’ care. Heming and Willis have 2 young daughters of their own too – daughters Evelyn and Mabel. She also has the advantage of having enough money. It’s something that many people who are faced with an illness don’t have.

I don’t think I’ll ever forget one time I was in line at a drug store to get my monthly dose of anti- seizure medication. Ahead of me was a woman, also there to get her medication. Her medication cost more than $1,000. Insurance wasn’t covering it. She was on the verge of tears as she had no idea how she could afford such expenses. But she also couldn’t function without them, so it wasn’t like she had a choice. It was either that she didn’t get the pills and she’d spend her days ill an unequaled in her daily life, or she did go ahead and get the medication and she’d go under a financial burden. So she called her husband to let him know of her situation and ask him what she should do. He told her to get the medication, and they’d cancel their plans to go on vacation with their kids that they were so looking forward to.

It was really hard for me to witness this entire ordeal. If I could, I would’ve paid for her medication myself. It was heartbreaking knowing that something had to give, and not only did something had to give, but others who weren’t even the ones that were ill, had to suffer from it too. That’s the reality of becoming ill and having to rely on medication to live a ‘normal’ life. It costs an arm and a leg to do so (almost literally). Many would assume that Canadian citizens are benefited by free healthcare, but that’s simply not the case. Health is anything but free. It’s only free when the person that’s ill is really, really poor, or it’s financially manageable when the person that’s ill comes from money and has the ability to pay for it. To put more of an emphasis on it, while healthcare in Canada is publicly funded and many services are free at the point of use for Canadian citizens and permanent residents, it’s not entirely “free” in the sense that there are no costs involved. Public healthcare in Canada, known as Medicare, is funded by taxes and covers most medically necessary hospital and physician services. However, certain services like prescription drugs, dental care, vision care, and some other services aren’t covered and may require out-of-pocket payments or supplemental insurance. A more detailed breakdown for is as follows:

• Publicly Funded: The Canadian government, through federal and provincial/territorial funding, provides public health insurance for citizens and permanent residents. 
• Free at Point of Use: Many essential medical services, including doctor visits, hospital stays, and certain treatments, are provided without requiring an additional payment at the time of service. 
• Not “Free” in Full: While many services are covered, certain expenses like prescription drugs, dental care, vision care, and some specialized services are not covered by public insurance and require out-of-pocket payments or supplemental insurance. 
• Supplemental Insurance: Many Canadians choose to purchase supplemental insurance to cover the costs of services not covered by public health insurance, such as prescription drugs, dental care, and vision care. 
• Provincial/Territorial Variations: The specifics of coverage and services provided under public insurance can vary slightly from province to province and territory to territory. 

And let me tell you, having to go to a free doctor’s appointment isn’t much of a walk in the park. At one doctor’s appointment in particular, I had to wait for my turn for 5 (!) hours to see the doctor. The fact that I had a seizure attack during those 5 hours didn’t help much either. A man ahead of me gave up his turn for me because he saw how much I was struggling. He, too, waited 5 hours for his turn. Maybe even longer. Unlike me, he probably had so much more to do with his time than sit around at a doctor’s office. He probably had work, kids to spend time with. And yet, he gave up his turn to make sure I was okay and allowed me to go ahead of him to see the doctor sooner. That very moment was unforgettable to me. I probably thanked him  I thanked him so many times that I lost count. It’s kindness such as this that I want to see more of. He didn’t have to do it. He most likely had all the reasons in the world not to do it. But this small act of kindness meant the world to me.

The medical system isn’t in the patient’s favour. It doesn’t actually care about the patient’s well-being, but rather about how much money they’d get out of them. Their mainly target those who are in vulnerable positions. That’s exactly what had happened to me in my epilepsy diagnosis. I was an easy target to misdiagnose because of my cerebral palsy. You see, cerebral palsy and epilepsy are frequently associated with one another. Approximately 40-45% of individuals with CP also experiencing epilepsy. This correlation arises because both conditions are often rooted in brain damage. But that wasn’t the case for me. Yes, I have cerebral palsy. But no, I don’t have epilepsy because of it. Nothing of the sort ever showed I had epilepsy. No EEG showcased any epileptic activity, and I had 7 of them done in the years since I was diagnosed.

But it was psychogenic seizure disorder that I suffered from. The only way to treat such a disorder is through natural remedies, such as diet, sleep, and therapy. No neurologist will ever say that, because they all want to make money out of the patient. They kept telling me that they didn’t know what was wrong with me, and yet, continued to prescribe me medication, which sporadically made my condition even worse; much worse than it should’ve been. And so, instead of working on myself and my trauma, which was causes PNES to develop in the first place, I was going through treatments that made my body weaker. Misdiagnosis can have significant consequences, including unnecessary exposure to antiseizure medications with potential side effects and even exacerbation of PNES symptoms. This is exactly what happened to me. I ended up suffering at least 50 seizures a day, every day, because of it.

This happens more than one might think. Research suggests that 20% to 30% of patients seen at epilepsy centers for drug-resistant seizures may actually have PNES. My seizure disorder. A misdiagnosis can occur due to the similarity in symptoms between PNES and epilepsy, the complexity of the diagnostic process, and the challenges in differentiating between the two conditions. Distinguishing between PNES and epilepsy can be challenging, as both conditions can involve seizures, but PNES is a psychological condition rather than a neurological one. In my case, because I have cerebral palsy, doctors automatically misconstrued my condition as being epilepsy, and they based this on what statistics had told them about the correlation between these two disabilities.

There could be numerous factors contributing to PNES, and all of them are psychological. These seizures are a manifestation of underlying psychological distress, unresolved emotions, and/or trauma. They are not consciously produced and are not a sign of feigning. The very difference between epileptic seizures and psychogenic seizures is that psychogenic seizures can look like epileptic seizures, but they don’t have a physical cause and are not related to epilepsy. Let me be clear that seizures caused by PNES are most certainly real and are by no means faked or exaggerated. The official cause for my seizures to have occurred, as told by my medical records, was a concussion that I suffered following a car accidents. In most cases, seizures caused by a concussion are considered to be epileptic. At the same time, however, not all seizures caused by a concussion are automatically considered epileptic seizures. This factor didn’t help my case whatsoever, on top of the fact I have cerebral palsy.

While it might be true that my struggle with seizures began following me suffering a severe concussion, other traumatic events I’d gone through in my life weren’t ever considered in the years since. PNES are believed to be a manifestation of the body’s response to intense stress or trauma. The body may use seizures as a way to dissociate from or cope with the overwhelming emotional experience. Even after the initial trauma, the individual may still experience the emotional impact of those events without ever realizing it, which can trigger seizures. While childhood trauma is a strong predictor, PNES can develop at any age. The exact timing of onset can vary depending on individual factors and the nature of the traumatic experience. 

But PNES isn’t just about childhood trauma. It can be caused by trauma experienced at any age. For instance, a history of rape or abusive relationships is a significant risk factor for developing psychogenic nonepileptic seizures (PNES). Studies show that individuals with PNES are significantly more likely to report a history of violence, maltreatment, and sexual assault compared to the general population. In fact, some research suggests that sexual assault trauma can account for a substantial portion of the increased risk of PNES in women. I myself had gone through rape and abuse in my personal life. I was raped when I was in my teens and was involved two abusive relationships thereafter before I met my now-husband. I was coping with the trauma completely alone. I had no one to help me. I didn’t even admit to it for 4 years after the initial rape had happened. I continually told myself that it was consensual. That was what I desperately wanted, and even needed, to believe. And the reality is, I never properly dealt with this trauma. I think that what happened was that my body couldn’t handle the pressure anymore and gave in, and that was what caused the seizures. It just so happens that I suffered a concussion in between these events.

Statistics show that sexual assault trauma accounted for 22% of the increased risk of PNES in women compared to men. I wish I knew all this before. It would’ve made such a difference in how my life with seizures would’ve turned out. While simply understanding PNES, doesn’t automatically stop the symptoms, it can be a crucial step in managing them. Learning about PNES can be part of a broader treatment plan that addresses the underlying psychological causes. Understanding the triggers and patterns of PNES can empower individuals to develop coping mechanisms and potentially prevent future episodes. 

So now, after getting to know the roots of PNES and my story of how finally came to realize my struggle with it, you’re probably wondering what all this has to do with being your partner’s caregiver. Well, let it be known that being a caregiver is no easy task. Just like a childhood trauma, sexual trauma or other. Let’s not even pretend that becoming a caregiver to a partner is an easy task. Belittling the hardships of becoming a caretaker and definition the toll it can take on one’s self just won’t do. Of course, we’ve already heavily talked about free complexities that come with suddenly becoming your partner’s caregiver and what comes with it. Believe me when I tell you there’s so much more to it, and it’s more than just about the finances, even though it’s a big part of it. Let’s not even begin to feminism Emma Heming’s own hardships just because she has the financial advantage to do it. She went from being a model and the much younger wife of one of the biggest movie stars of all time to being his full-time caregiver. It’s a lot to taken in. Becoming a caregiver for a partner can take a significant emotional, physical, and financial toll. Caregivers often experience burnout, stress, and may neglect their own well-being. These challenges can impact the caregiver’s mental and physical health, relationships, and work-life balance. To look at the matter more closely, here are the 5 aspects of how becoming a caregiver can put a toll on a person’s life:

1. Emotional and Mental Strain: 

• Burnout: Caregivers often feel physically and mentally drained, leading to exhaustion, sleep problems, and difficulty managing daily tasks. 
• Stress and Anxiety: The constant worry, responsibility, and potential for negative situations can lead to high levels of stress and anxiety. 
• Negative Emotions: Caregivers may experience anger, depression, or feelings of alienation, potentially impacting their relationships with their partner and others. 
• Compassion Fatigue: The emotional strain of caring for someone with a chronic illness or condition can lead to compassion fatigue, where the caregiver’s empathy becomes depleted. 
• Lack of Control: Caregivers may feel their life is no longer their own and that they are constantly focused on their partner’s needs, leading to resentment or feelings of being overwhelmed. 

2. Physical Health: 

• Deteriorating Health: Caregiving can lead to physical health problems, including headaches, backaches, and frequent illnesses due to stress and lack of self-care. 
• Sleep Problems: Sleep disturbances like insomnia or sleeping excessively can be common among caregivers due to stress and the demands of caregiving. 
• Weight Changes: Appetite changes and weight fluctuations can also occur due to stress and depression. 

3. Financial Impact: 

• Career Disruptions: Caregiving responsibilities can lead to reduced work hours, career changes, or even job loss, impacting financial stability. 
• Increased Expenses: Caregiving can involve additional costs for medication, therapies, equipment, or other care-related needs. 

4. Relationship Challenges: 

• Strain on the Relationship: The stress of caregiving can strain the relationship between the caregiver and their partner, potentially leading to conflict or emotional distance. 
• Social Withdrawal: Caregivers may withdraw from social activities and friendships due to the demands of caregiving, leading to feelings of isolation. 
• Reduced Intimacy: The focus on caregiving can sometimes lead to reduced intimacy and emotional connection with their partner. 

5. Work-Life Balance: 

• Reduced Work-Life Balance: Caregiving obligations can significantly impact work-life balance, making it difficult to maintain a healthy balance between work, personal life, and caregiving responsibilities. 
• Difficulty Finding Support: Accessing adequate support for caregiving can be challenging, further exacerbating the burden on caregivers. 

Who’s ever to say that all this wouldn’t cause a caregiver to develop PNES in their lifetime? Who’s ever to say that being a caregiver to my husband didn’t cause me to develop PNES? If I could do it all over again, there’s so much I’d do differently when it comes to providing care for my love. First and foremost, I’d take good care of myself. I’d take time to recharge, go see my friends more, take time to recharge from to time, and do whatever it was that made me happy…without feeling guilty about it. I just hope that if you’re reading this and are in a position where you’re a caregiver to your partner, you don’t make the same mistakes that I did in my own journey. You matter, and don’t you forget it!