Support for Caregivers
- Emma Heming Willis, 48, wife and caregiver of legendary actor Bruce Willis, 69, who suffers from a rare form of dementia called frontal temporal dementia (FTD), is speaking out on the importance of prioritizing your own care when supporting a loved one through an illness.
- When a partner, family member or close friend is diagnosed with a rare disease like Bruce Willis, it can turn your world upside down. Your attention will suddenly turn from your job and family to caregiving. And no matter how much you plan for your new role, the enormity of it can take you by surprise.
- Feeling fatigued or stressed at times can lead to bigger issues that could impact you, and that’s why it’s so important to not only prioritize your mental health, but also your physical health as well. Focusing on individual activities that bring you joy can help, and relaxing with some quiet moments of meditation can also do wonders for a reset. Be sure to consult with a doctor or therapist if things start to feel too overwhelming.
- For more resources on support for caregivers, sign up for SurvivorNet’s caregivers guide.
The mother of two spoke out on Instagram, with the tragic deaths last month of 95-year-old actor Gene Hackman and his wife, Betsy Hackman, 65, sparking the crucial reminder. Hackman had Alzheimer’s, the most common type of dementia, and died from natural causes a week after his wife, who died from a respiratory illness. She had been his primary caregiver.
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“It’s just reminded me of this broader story,” she continued in a serious and somber tone, “and that caregivers need care too. And that they are vital and that it is so important that we show up for them so that they can continue to show up for their person. I think there’s this common misconception that caregivers, they got it figured out, they got it covered, they’re good … I don’t subscribe to that.”
“I think that we need to be showing up for them,” she said before signing off.
A wave of emotional responses filled Emma’s comments section, understandably, from others in similar situations, showing empathy for all who can relate to these tragedies and illnesses.
“I’m so glad you said this because that’s exactly what I was thinking when this happened that his wife was so devoted to him that she didn’t take care of herself and this happens a lot with women a lot!” one person responded. “She didn’t have any children, but I’m amazed that no friends checked in on her.”
“I couldn’t agree with you more!” another follower wrote of the tender topic, “100 spot on! Love to you and I pray you have the support that you need!”
‘Anger and Grief’
Emma, a health advocate and host of Make Time Podcast, explained more on her own caregiving situation in a recent anniversary tribute to Bruce, the beloved fan favorite star who sold out blockbuster films like Die Hard (1988) and The Sixth Sense (1999) at the box office for decades. Along with his children with Emma, the father of five shares three kids with his ex Demi Moore, 62, who has a great relationship with the couple as a blended family. He and Emma met in 2007 and married in 2009. Bruce was diagnosed with FTD in 2022.
RELATED: What Is Bruce Willis’ Rare Dementia Diagnosis And How Is His Family Coping With His Diagnosis?
“17 years of us,” she wrote on December 29 attached to a photo of the pair in the water on vacation in Turks and Caicos, islands southeast of Miami. “Anniversaries used to bring excitement — now, if I’m honest, they stir up all the feelings, leaving a heaviness in my heart and a pit in my stomach. I give myself 30 minutes to sit in the ‘why him, why us,’ to feel the anger and grief.”
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“Then I shake it off and return to what is. And what is… is unconditional love,” she shared. “I feel blessed to know it, and it’s because of him. I’d do it all over again and again in a heartbeat.”
Caregiving Isn’t Easy — Recognize That You May Need Help
When a loved one is diagnosed with cancer or a rare disease like Bruce Willis, it can turn your world upside down. Your attention will suddenly turn from your job and family to caregiving. And no matter how much you plan for your new role, the enormity of it can take you by surprise.
“Caregiving is a huge job. It’s going to impact your health and your physical well-being. It will impact your finances, your social life, your emotions, and your mental energy,” Amy Brown, nurse manager of Gynecologic/Oncology at Johns Hopkins Hospital in Baltimore, Maryland, previously shared with SurvivorNet.
With caregiving taking up a lot of your personal time away from work, school or other life duties, it’s important to realize that you may need help.
“I learned this the hard way myself,” Brown said. “I have been the caregiver to my dad for 12 years. And I’m a nurse and I’m designed and equipped to handle that, and I tried to do it myself and failed miserably.”
Brown stresses the importance of caring for yourself while you care for your loved one. In order to fully take care of someone, you need to feel your best.
Feeling fatigued or stressed at times can lead to bigger issues that could impact you, and that’s why it’s so important to not only prioritize your mental health, but also your physical health as well.
A Guided Meditation for the SurvivorNet Community
That’s why, if you start to feel the physical toll of being a caregiver, it’s so important to take some time to relax or even visit the doctor if things progress.
Learning More About Frontotemporal Dementia (FTD)
Frontotemporal dementia is the most common type of dementia for people under 60 years old.
FTD is described by Johns Hopkins Medicine as “a group of disorders that occur when nerve cells in the frontal and temporal lobes of the brain are lost” that caused the lobes to decrease in size.
The disease can alter changes in a person’s behavior, personality, language, and movement.
“These disorders are among the most common dementias that strike at younger ages,” Johns Hopkins explains. “Symptoms typically start between the ages of 40 and 65, but FTD can strike young adults and those who are older. FTD affects men and women equally.”
Common Types of FTD:
- Frontal variant (affects behavior and personality)
- Primary progressive aphasia (makes it difficult for a person to communicate and affects speech)
- Semantic dementia (affects the ability to use and understand language)
“A less common form of FTD affects movement, causing symptoms similar to Parkinson’s disease or amyotrophic lateral sclerosis (Lou Gehrig’s disease),” Johns Hopkins adds.
The cause of the disease remains unknown, however, specific subtypes of FTD have been linked to mutations on a few genes.
Symptoms of FTD
Common symptoms of FTD, which start gradually and progress steadily or rapidly, are:
- Behavior and/or dramatic personality changes, such as swearing, stealing, increased interest in sex, or a deterioration in
- personal hygiene habits
- Socially inappropriate, impulsive, or repetitive behaviors
- Impaired judgment
- Apathy
- Lack of empathy
- Decreased self awareness
- Loss of interest in normal daily activities
- Emotional withdrawal from others
- Loss of energy and motivation
- Inability to use or understand language; this may include difficulty naming objects, expressing words, or understanding the meanings of words
- Hesitation when speaking
- Less frequent speech
- Distractibility
- Trouble planning and organizing
- Frequent mood changes
- Agitation
- Increasing dependence
Symptoms can vary depending on what part of the brain is affected.
“Some people have physical symptoms, such as tremors, muscle spasms or weakness, rigidity, poor coordination and/or balance, or difficulty swallowing,” Johns Hopkins explains. “Psychiatric symptoms, such as hallucinations or delusions, also may occur, although these are not as common as behavioral and language changes.”
Treating FTD
“Today, there is no cure for FTD, and no treatments available to slow or stop the progression of the disease,” the AFTD advises. “However, if you or a family member or loved one are affected, there are important steps that you can take to preserve and maximize quality of life. A growing number of interventions – not limited to medication – can help with managing FTD symptoms.”
Anyone in need of guidance and resources can call AFTD’s HelpLine at 866-507-7222 or email [email protected].
For more resources on support for caregivers, sign up for SurvivorNet’s caregivers guide.
Contributing by SurvivorNet staff.
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