Episode #51: A Conversation About: Caregiving Part 4: Caregiving Continued
April 14, 2025
The X-Podcast: Real Conversations About Mental Health
A Conversation About: Caregiving Part 4: Caregiving Continued
Episode #51
In this episode, the X-Podcast team has a conversation about the tragic death of Gene Hackman and his final days. They get into America’s elder care crisis. They also discuss their opinions about how this tragedy can happen to someone with substantial resources as much as it can to someone with limited or no resources. The team gets into the financial reality of caregiving in America and its toll on the caregiver. Xiomara also discusses some solutions through services that can connect pre-med and nursing students with families who need affordable care at a much lower cost than the traditional agencies.
Xiomara A. Sosa
Creator, Host, and Executive Producer
Listen to this episode at https://blubrry.com/studio_talk_mental_health/144565216/a-conversation-about-caregiving-part-4-caregiving-continued/
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Gene Hackman
Gene Hackman's final days reveal America's elder care crisis.
When beloved actor Gene Hackman was found dead in his Santa Fe home last month, the shocking details left fans and family advocates reeling. The 95-year-old Oscar winner spent his final days alone and confused, unable to care for himself after the sudden passing of his wife, Betsy. Medical examiners revealed the heartbreaking reality: Suffering from advanced Alzheimer’s disease, Hackman likely didn’t even understand that his wife had died just days earlier.
It was discovered with no food in his stomach, collapsed in his home’s mudroom. Even more devastating, his pacemaker data showed he had survived nearly a week on his own in a severely compromised mental state.
If this tragedy could happen to a Hollywood legend with substantial resources, what hope exists for average families facing the dementia care crisis?
The financial reality is staggering. Full-time home care for someone with dementia can cost up to $11,000 monthly — far more than most families can afford. Traditional options present impossible choices. Nursing homes average nearly $10,000 monthly for a private room. Medicare won’t cover these long-term costs. Many families are forced to drain retirement accounts or have someone quit their job to provide unpaid care.
With America rapidly aging — the number of seniors is projected to reach 82 million by 2050 — and Alzheimer’s cases expected to more than double to 13 million, families nationwide are desperate for solutions.
Some families have found unexpected solutions through services that connect pre-med and nursing students with families needing affordable care at significantly lower costs than traditional agencies. Other innovations include adult day programs that provide specialized dementia care during working hours, allowing family caregivers to maintain employment while ensuring their loved ones receive proper supervision and stimulation in a safe environment.
Technology is playing a crucial role, too. Smart home systems can detect falls. Medication dispensers can send alerts when doses are missed. Remote monitoring notifies family members of potential problems. This creates a crucial safety net around seniors.
Combined with compassionate caregivers, these solutions are making it possible for more seniors to safely remain in their homes — an important consideration, given that 86 percent of older adults prefer to age in place. Baby boomers particularly resist the idea of institutional living, having seen their own parents’ experiences in nursing homes.
Preparation is key to avoiding disaster. Families should initiate conversations about care preferences long before crisis strikes. Create a comprehensive care plan, including financial considerations, caregiving arrangements, and legal documents. Those can prevent last-minute, often inadequate solutions.
But individual planning alone isn’t enough. True change requires policy innovations that make quality care accessible to all Americans, not just those with substantial resources. This means expanding coverage for home-based care, investing in caregiver training and support, and incentivizing the development of affordable care alternatives.
What happened to Gene Hackman reminds us that behind every dementia diagnosis is a person deserving of compassion, dignity, and human connection. His death puts a famous face on what thousands of families experience in silence every day. And while his legacy as an actor brought joy to millions, perhaps his final act will be even more profound — to inspire a society that refuses to let its most vulnerable members face their final hours alone.
Neal K. Shah is CEO of CareYaya Health Technologies and the chairman of Counterforce Health. He has been a featured contributor for CNBC, Wall Street Journal, Barron’s, and TechCrunch.
Caring for the Caregiver
Who is caring for the caregivers?
Emma Heming Willis, wife of actor Bruce Willis, recently posted on Instagram a compassionate statement about the tragic passing of Gene Hackman and his wife, Betsy Arakawa.
“Mr. and Mrs. Hackman’s passing made me think of the broader story, that caregivers need care too, that they are vital, and it is so important to show up for them so they can continue to show up for their person,” Willis wrote.
Many of you may know that Willis transitioned to the role of caregiver for her husband after he was diagnosed with aphasia and then frontotemporal dementia, often referred to simply as FTD.
Her message is an important reminder of the invaluable role family caregivers play in the health and well-being of their loved ones who may be aging, ill, or dealing with a disability. That role may include physical assistance, emotional support, advocacy, care coordination, health monitoring, and long-term care planning.
For many of us who have assumed the role of family caregiver (or had it thrust upon us), this crucial role in a loved one’s life in some ways defines us, yet at the same time, it often becomes an overlooked characteristic of who we are.
Without taking anything away from the person who is being cared for and the challenges they face, I find it heartbreaking that, as cancer survivors beat their disease and come out on the other side of a diagnosis, we never really think about the family caregiver who traveled that journey with them.
When an older adult finally succumbs to the ravages of Alzheimer’s or Parkinson’s disease, they are remembered by family and friends for the person they used to be and the milestones and achievements they accomplished.
However, when do we show up for family caregivers?
When are they honored for their caring and sacrifice, their power of love that transcended the disease, and their contributions to navigating an often complex and unpredictable journey? Family caregivers have endured the journey, too, and it may have altered them in many ways.
Sometimes, it takes a person in the public eye to raise awareness of a cause. As an organization advocating for family caregivers in our community, I am heartened by celebrities who are raising awareness of caregivers’ needs and values.
Rosalynn Carter was a passionate and dedicated advocate for caregivers throughout her life. Her efforts shaped how society views caregiving, especially in the context of aging and disabilities.
Maria Shriver, whose personal experience with caregiving began when she cared for her father, Sargent Shriver, who was diagnosed with Alzheimer’s disease, is a prominent advocate for caregivers. Her advocacy efforts have focused on raising awareness, providing resources, and pushing for systemic change to support caregivers.
Bradley Cooper, who took a hands-on caregiving role to support his mother during her lung cancer illness, has spoken publicly about the emotional and physical toll that caregiving took on him, particularly as he navigated the responsibilities of his career while also tending to his mother’s needs.
He often advocates for greater recognition of caregivers’ needs, especially regarding mental health and emotional well-being.
Cooper has produced a two-hour documentary centered on the personal experiences of caregivers providing for loved ones and the challenges and triumphs they face each day. It premieres June 24 on PBS.
Emma Heming Willis will soon debut a book, ‘The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path.’ The book is a compassionate support guide that helps caregivers care for themselves while they navigate a loved one’s dementia.
As a family caregiver in our community, I want you to know you are not alone. We see you and want to celebrate and support you. On May 6, Senior Concerns will hold its 7th annual Caregiver Recognition Day, providing family caregivers with the opportunity to renew their spirits and enjoy an uplifting and empowering program. It is a free event for anyone caring for an aging loved one.
To register, go to seniorconcerns.org/ crd2025registration.
Andrea Gallagher is a certified senior advisor and president of Senior Concerns, a nonprofit agency serving Ventura and western Los Angeles counties. For more information, go to seniorconcerns.org or email her at agallagher@seniorconcerns.org.
Importance of Family Caregiving
The Role of Family Caregivers in the Healthcare System
Family caregivers often fill gaps in the healthcare system that professional services might not. They help manage long-term health issues, make sure their loved ones take medications correctly, and support them all from the comfort of their home. This ensures that loved ones receiving care at home are healthier. Also, it takes some pressure off hospitals and care homes. If not for the tireless efforts of family caregivers, the healthcare system would struggle even more than it already does to keep up.
Emotional and Financial Impacts on the Caregiver
Looking after someone you love can be great, but it can be really hard work that can wear you down. Aside from being physically tiring, it can be emotionally draining, too. Watching a loved one struggle with illness or aging can take a toll on your mental health. Without the right support, such as counseling or respite care, this can lead to stress, anxiety, and even depression.
Caregiving can be a strain on your finances, too. According to AARP, many people who provide unpaid care to their family members spend roughly 26% of their income on care-related expenses.
Most family caregivers are forced to cut back on work hours or leave their job to care for a loved one, which usually means they’ve lost their income and any other benefits that come with their job.
Factors Influencing Payment for Family Caregivers
Like many other family caregivers, you may provide unpaid care out of love. The good news is that some programs pay you to care for your loved ones who need extra support. That said, the amount you can earn varies greatly depending on a few factors.
State and Local Programs
Many states have Medicaid programs that let family members get paid for caregiving through Medicaid waivers or Home and Community-Based Services (HCBS). The details, payment rates, and eligibility rules can be different depending on where you live because each state has its laws.
For example, in Pennsylvania, the Medicaid Waiver Program allows family members to become paid caregivers by becoming Home Health Aides for their loved ones. In Colorado, the Family CNA program lets those who qualify receive help with daily tasks from a family member who is paid for their caregiving.
If you’re looking to get paid for caring for your loved one, check your state’s Medicaid program to see if it offers caregiver compensation and find out what you need to do to qualify.
What is a Durable Power of Attorney?
There are two kinds of durable powers of attorney.
A durable financial power of attorney is a document specifying who is authorized to manage your financial affairs if you become incapacitated. This person is called an agent.
Separately, a durable healthcare power of attorney (which is often part of an advance directive) appoints someone (again, your agent) to make medical decisions on your behalf.
What Obligations or Liabilities Do Financial Caregivers Face?
Protecting Those Under Your Care from Financial Scammers (and What to Do If They Have Already Been Victimized)
You are immersed in caregiving—doctor appointments, transportation, communication—all the various activities that are so important. Now add in having to think about bad actors who want to take advantage of your vulnerable position to commit outright financial fraud. I mean, aren’t you doing enough already? Well, of course you are!
Unfortunately, there are people in the world who not only don’t care about your best interests but who would abuse other people’s personal information if they get their hands on it.
Data breaches are rampant today, and personal data of all kinds is ending up in the wrong hands through absolutely no fault of the victim. From healthcare providers to banks, many of the institutions that we depend on in our everyday lives are being breached. Therefore, everyone needs to protect their data at a personal level and not be complacent.
Sadly, the criminals even specifically target older persons, who often have good credit scores and assets.
So, what can you do proactively to prevent someone from scamming you or the person you are caring for? What can you do when that has happened and you are left dealing with the aftermath?
Here are specific steps caregivers can take to prevent scams or fraud.
Anyone who accepts the responsibilities of a caregiver must be aware of several potential liabilities and legal duties that accompany the role.
Separating Your Finances
The agent in a financial power of attorney has a legal and ethical responsibility to act in a “fiduciary” capacity, which means you are required to act in the best interest of your client or care recipient, as well as prevent any conflicts of interest.
A bigger difference between an informal and formal legal relationship is that the financial power of attorney also separates your finances from actions you take on behalf of your care recipient.
For example, as someone’s agent, you can make financial commitments on their behalf. They would be responsible for paying those costs out of their own money; you would not be personally responsible for them.
If you don’t have the legal documents to separate your finances from the recipient's, be cautious about signing contracts or agreements for treatment or services on someone else’s behalf.
If you sign paperwork that asks you to be the “responsible” party (or guarantor or cosigner), AARP explains that you may be personally liable for the expense. Always read everything before you sign, and have someone explain the paperwork if you don’t understand. You don’t want to be surprised with a big bill with your name on it a few months down the road.
Providing a Standard of Care
If you are in charge of an elderly person’s finances, you must use that money properly, purchasing necessary services for the benefit of the person to whom care is given. Just like you must provide a clean and safe environment, nutritious meals, clean bedding, and clothes as a caregiver, failure to provide care (Source: Dr. Robert Stall’s Caregiver’s Handbook) is a form of abuse or neglect.
All states have passed elder abuse laws, though the specifics vary. Caregivers are bound by these laws in two ways: not to abuse the elder person (physically, mentally, or monetarily) and to report any incidents of abuse or suspected abuse. Contact your county mental health services for guidance.
Challenges and Limitations
As you explore payment options for caregiving, you might encounter some challenges. Programs often have specific eligibility rules you need to meet, and you’ll likely need to show proof of the care you provide with documents.
Despite these hurdles, learning about different programs and their specific details can help you find the right support for your caregiving needs.
Conclusion
While many caregivers provide unpaid care, there is growing recognition of their important role in supporting loved ones and the healthcare system. Advocacy efforts are working toward better support and improved compensation for family caregivers and increased funding for caregiver programs.
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Resources
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References
https://www.caringinfo.org/planning/financial-matters/how-to-provide-financial-caregivin/
https://chds.hsph.harvard.edu/family-caregivers-financial-well-being/
https://www.caringinfo.org/planning/financial-matters/how-to-provide-financial-caregivin/
https://thehill.com/opinion/healthcare/5231007-elder-care-crisis-dementia-alzheimers/
https://www.mpacorn.com/articles/who-is-caring-for-the-family-caregivers/
