Episode #48: A Conversation About: Caregiving Part 2: Financial Caregiving
March 24, 2025
The X-Podcast: Real Conversations About Mental Health
A Conversation About: Caregiving Part 2 Financial Caregiving
Listen to all episodes at https://publish.blubrry.com/s-1465186/Episodes/
Episode #48
In this episode, the X-Podcast team reacts to and discusses financial caregiving for loved ones. Xiomarea talks about her personal experience with financial caregiving as she cared for her parents for over 20 years. She gives tips on managing this very important part of being a primary caregiver.
Xiomara explains the difference between a caregiver and a caretaker when caring for someone unwell or aging. She defines what the term financial caregiving means and provides personal experience with it from her caregiving journey. She discusses some of the preparations that caregivers can take to help with the financial burdens of caregiving. Xiomara also touches on the cultural competency that is involved with caregiving within the Latino community and how that differs from the American non-Latino communities.
Xiomara A. Sosa
Creator, Host, and Executive Producer
#TheXPodcast #MentalHealth #Counseling #Therapy #Caregiving #FamilyCaregiving #CulturalNorms #MultigenerationalLiving #IntergenerationalLiving #FinancialCaregiving
What is the difference between a caretaker and a caregiver?
Caretaker
The caretaker is primarily concerned and focused on the upkeep and management of property, buildings, or objects. For example, assisting with the mowing of the lawn, helping with moving heavy items as needed, someone who spends more time maintaining a front lawn than the caregiver can because they are usually 100% caregiving. Caretakers help out with handyman chores as needed. They do not provide direct services to the person who is receiving caregiving.
Caretakers have a more transactional or task-oriented relationship with the person receiving caregiving from the actual caregiver. They focus on fulfilling the practical needs of the property along with the caregiver. They are typically paid for their services. In my case, I gave my brother financial contributions monthly because it was my cottage and his house that he would help maintain when I didn’t pay someone to come to do those chores and maintenance-related issues. However, he never gave me any money for my caregiving purposes as a caregiver to our parents.
Caregiver
A caregiver provides personal and emotional support to individuals, case management, and Activities for Daily Living (ADLs) such as daily medical and comprehensive needs, often to people with disabilities, illnesses, or aging-related needs.
The focus of the caregiver is on providing direct, personal care to individuals who need assistance with daily living activities, including physical, emotional, and practical support. That was 100% my role in the caregiving of both my parents for 20 years.
We as caregivers, especially family caregivers like me, are caring for our loved ones. There are also professional home health aides or someone who provides care at an assisted living facility, who are paid to do what I did and are also caregivers. But they are not on 24/7 like family caregivers are. Unless they live with the person and are on duty 24/7.
The relationship usually involves a close, personal relationship, with a focus on the well-being and quality of life of the care recipient. My relationship with both my parents was very close and very personal. They depended on me 100% in every aspect of their lives. Culturally, as the eldest Latina child and also as a real labor of love, I did it for 20 years.
Family caregivers are almost always unpaid. It depends on the context. I was unpaid. Family caregivers are often unpaid, while professional caregivers are paid.
There are 53 million caregivers in the USA providing care for individuals with chronic illnesses or the aging population. These caregivers contribute significantly to the healthcare system, yet they may experience adverse consequences due to caregiving, including financial burdens. There is a lot of research on the nature and effect of financial interventions for family caregivers.
Chronic illnesses are conditions that last 1 year or more, require ongoing healthcare attention, and/or limit their daily activities. That eventually became the situation with both of my parents. Family caregivers assist with daily living activities and provide complex medical and nursing tasks at home. In addition, family caregivers navigate a multitude of healthcare-related tasks including assisting with health insurance claims, facilitating medical care and social services, and providing transportation to medical appointments.
What is Financial Caregiving?
Financial caregiving is a new term describing everything from paying the occasional bill for someone to entirely managing their finances. It is very common for caregivers to begin with taking care of simple personal matters, but transition into providing financial care over time. CaringInfo is an organization that provides resources for understanding financial caregiving and the pitfalls to avoid.
Financial caregiving doesn’t have a formal definition; it’s a term used to describe managing the personal finances of a seriously ill person, an elderly person, or other adults who require assistance – including paying bills, monitoring bank accounts, managing trusts, filing taxes, and taking on financial power of attorney.
More than 90% of caregivers act as financial caregivers, which may even include contributing their own money to cover costs in addition to managing the care recipient’s money. After two years of starting to receive general care, more than half of recipients need complete assistance managing their finances (source: Merrill Lynch).
Often, caregivers fall into taking on increasing responsibilities regarding money without having discussed finances with the person they are caring for, nor have they kept track of what they have spent on their behalf.
While having these types of conversations is understandably difficult, it’s important to begin discussing, documenting, and planning for this eventuality as soon as possible to prevent future problems.
This is especially critical if the person you’re caring for suffers from dementia or would otherwise not be considered competent to make decisions soon. The care recipient will need to sign legally binding documents while they are still considered competent. While planning may feel overwhelming, there are many tools available to help you in the role of financial caregiver.
Financial caregiving is the management of another person's finances due to changing life circumstances such as aging, disability, or illness. Financial challenges often accompany serious illness and caregiving. As you enter a period of financial caregiving, it is important to know about resources that are available to you so that you are organized and take on any challenges that occur, like medical debt. There are many sources of financial support, such as private insurance, Medicare, Medicaid, and other governmental and private programs.
What are the financial burdens of caregivers?
Experiencing health consequences due to caregiving and then managing short-term and long-term health issues is costly with thousands of dollars in annual costs for individuals with chronic illnesses.
How to provide financial caregiving
Taking care of someone else’s money-related matters — whether it’s as simple as paying a few bills or as formal as getting a Financial Power of Attorney — is called financial caregiving. It is very common for caregivers to begin with taking care of simple personal matters, but transition into providing financial care over time. Because needs can be fluid and change quickly over time, it’s important to understand potential legal duties and liabilities ahead of time.
Family caregivers’ financial well-being
The estimated economic value of the unpaid contributions of family caregivers to chronic illness and aging-related care is approximately $470 billion. Family caregivers experience multiple consequences due to their caregiving role, including financial distress. Financial distress or burden in family caregivers is related to multiple issues including direct and indirect costs of healthcare for the care recipient, changes to or loss of employment, and healthcare costs associated with the caregiver’s health.
Out-of-pocket costs have been a substantial contributor to the financial burden of family caregivers. Most family caregivers suffer steep out-of-pocket expenses related to caregiving, spending thousands of dollars on average for direct medical costs and indirect costs including food and meals, household goods, travel costs, home modifications, and legal fees.
Over half of the employed caregivers of all ages have found it challenging to balance their work and caregiving duties; they report coming in late, leaving early, or taking time off to fulfill their caregiving role. Over 75% of individuals who retired early due to family caregiving would have prolonged their engagement in the workforce if they had access to alternative work arrangements such as flexible hours/shifts, telecommuting, compressed schedules, paid leave, or phased retirement.
Family caregivers who either disrupt their careers or leave the workforce completely to fulfill their caregiving role can experience substantial economic risk and both short-term and long-term financial strains. Caregivers have lower income in later life, reduced engagement in the workforce, and lower net worth compared with non-caregivers. The total opportunity cost of forgone earnings among caregivers was about US$67 billion annually.
Family caregivers in the U.S. are systematically unsupported, both through the healthcare system and within the workforce. Financial distress is also a health equity issue, with women being more likely to suffer from poverty and/or rely on public assistance services due to their caregiving responsibilities. Caregivers who identify as Black or Latinx report greater financial strain.
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Resources
https://www.thex-studio.org/resources
Guides for Managing Someone Else’s Money – The Consumer Financial Protection Bureau (CFPB)
What Caregivers Should Know About Managing a Loved One’s Money – AARP
Family Caregiver Alliance: A community-based organization that supports families providing long-term care
Caregiver Action Network: This offers resources for family caregivers, including a Caregiver Help Desk
The National Alliance on Caregiving: A resource for help and connections
AARP: A resource for help and connections
VA Caregiver Support Program
Offers programs for general caregiver support services and comprehensive assistance for family caregivers
State Medicaid programs
Some states offer paid caregiver programs, also known as consumer-directed personal assistance programs
211
A service that can connect callers to local assistance, including specialists
CarePages
Free web pages that allow caregivers to connect with friends, family, and others for support
Religiously-based services
Many religious and cultural groups offer support for caregivers
The National Institute of Aging, The CDC, The American Cancer Society, The American Heart Association, and The Alzheimer's Association.
Organizations
Family Caregiver Alliance: A community-based organization that supports families providing long-term care
Caregiver Action Network: This offers resources for family caregivers, including a Caregiver Help Desk
The National Alliance on Caregiving: A resource for help and connections
AARP: A resource for help and connections
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/
