As care needs increase, for many working full-time while providing care becomes nearly impossible. 

Leaving a job to care for a loved one is a tough decision. A dual-income household may shift to a single income if the loved one cannot work any longer, and then the caregiver may have to leave their job as well to care for them. When the burden of losing one or two household incomes is added to the already astronomical costs of care, this burden can become a nightmare.  

Financial Support for Caregivers 

To alleviate the financial strain of caregiving, consider the following options: 

1. Cost-Effective Alternatives: 

Instead of leaving your job, you can hire a caregiver at an affordable rate from CareYaya. Caregivers on the CareYaya platform are mainly college students pursuing healthcare careers and provide care at a reasonable rate ($15 per hour), which benefits both sides. 

For cost-effective treatment alternatives, you can open a direct conversation with your loved one’s healthcare team. They may recommend equally effective options that are more affordable. 

2. Government Programs: 

  Look into government programs that offer financial assistance for caregivers: 

• The National Family Caregiver Support Program provides grants to support family and informal caregivers.  

• Some states, like New York and California, offer Paid Family Leave (PFL) programs to supplement caregivers’ income. 
• Medicaid and Veteran Services may have caregiver pay programs if your loved one is eligible. 
   

3. Disease-Specific Foundations: 

Explore foundations that specialize in the medical condition your loved one has. Some, like CancerCare, offer assistance programs. 

4. Job Retention Protections: 

Be aware of federal workplace protections for caregivers: 

• The Americans with Disabilities Act and the Family Medical Leave Act offer job retention protections. 
• Seek support from organizations like AARP and the National Alliance for Caregiving for additional resources. 
• Stay updated on workplace policies related to caregiving. 
• The Alzheimer’s Association provides a comprehensive financial planning resource page for those caring for individuals with brain changes. 
   

5. Consult with Social Workers and Financial Navigators: 

Consider working with social workers or financial navigators who specialize in caregiving financial planning. They can help you create a comprehensive financial plan and navigate available resources. 

6. Long-Term Care Insurance: 

Enroll in long-term care insurance if it’s feasible for your loved one. It can provide financial support for caregiving expenses. 

7. Address Mental Health and Stress: 
    

• Recognize the mental toll caregiving can take and seek emotional support. 
• Explore resources and organizations that offer mental health support for caregivers. 
• Stay connected with your loved one to maintain a strong bond despite the challenges. 

These financial tips and resources can provide caregivers with access to valuable information and support to navigate their caregiving journey more effectively. 

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[00:00:28] Patti: Just the navigating the finances was just not fun in any way. Like, there wasn’t like the silver, beautiful lining. Whereas like with my mom, there was moments of joy, there was moments of laughter. I mean, anyone that’s seen our videos, we were living, we were having fun. None of the finances were fun. [Music] 

[00:00:48] Allie: While working on the Empowered Us podcast, The Caregiving Soul, I stepped into the world of caregiving for the first time. I had, of course, observed caregiving at a distance and even up close within my family, but never truly had an understanding of the daily stressors that occur while caring for a loved one.  

[00:01:08] Through these conversations with our guests and other chats I had while preparing for episodes with our host Dannelle, I realized that the emotional stress is just one component. Oftentimes, when a person becomes a caregiver, they’re tasked with juggling work and care. A pattern I noticed in many of our guests is while most people try to balance the personal and professional in the early days of caregiving, oftentimes care needs increase, and the ability to work full-time while simultaneously caring for a loved one is simply not possible.  

[00:01:45] But for many people, the financial component of care is simply too much to bear without steady income. So, what can a caregiver do when trying to balance work and finances with giving their loved one the care they need? 

[00:02:00] Hello and welcome to The Hidden Costs of Health. In this show, we’re exploring the burden of medical expenses in this country and how a health event can quickly spiral into financial toxicity.  

[00:02:13] I’m Allie Sandler, a producer for Empowered Us.  

[00:02:20] [Music Ends] 

[00:02:20] According to a 2021 AARP report, the United States has around 48 million unpaid family caregivers who are not only dedicating their time and efforts to the wellbeing of their loved ones, three quarters of the family caregivers surveyed reported spending an average of $7,242 annually on out of pocket costs related to caregiving such as medications and additional supervised care. This is before additional personal costs, such as childcare, in order to provide care for their loved one.  

[00:02:55] On top of that, 6 in 10 caregivers are currently working either full-time or part-time. While generating income and professional goals contribute to this statistic, what makes things even more difficult is that health insurance and family income often depend on a caregiver’s ability to work. Those who had a more difficult time of juggling work and caregiving simultaneously, and reported 2 or more work strains, like taking time off or working different hours, averaged $10,525 per year on caregiving expenses.  

[00:03:32] Caregivers may have a greater awareness of the cost of care and may feel even greater pressure for meeting the financial responsibilities of care than their loved one. Part of this is because caregivers are often reluctant to speak about treatment costs in front of the person they’re caring for. So, they sacrifice their own health and financial wellbeing to try to meet the demands placed on them.  

[00:03:48] [Music] 

[00:03:51] Patti: My name is Patti LaFleur and I am the former care partner for my mom, Linda, who had younger onset dementia. 

[00:04:01] Allie: If you’re currently on social media and part of the caregiving community, chances are you know Patti LaFleur. She posted the daily experiences of her and her mother while being a full-time care partner. Since her mother’s passing, she has continued to be an advocate for other care partners. She shared her story from the emotional perspective on The Caregiving Soul, but I wanted to touch base with her again, to learn more about her caregiving experiences from the financial side.  

[00:04:31] [Music Ends] 

[00:04:31] Patti: So, I think one of the biggest financial changes that having my mom moved in with me, that I actually noticed was in our grocery bill. So, my mom, in addition to having dementia, had type one diabetes. So, she had some very specific nutritional things that we had to be very cautious of, so I really noticed how much more expensive it was just in our weekly grocery bills. 

[00:05:04] In addition, she required a lot of medical supplies or supplies for incontinence and personal hygiene, and so those additional costs on our groceries, or at Costco, or on Amazon, were pretty challenging to navigate because those were some of the just regular bills that we had that I wasn’t prepared for. Right?  

[00:05:31] These little additional costs really added up at the end of the month and posed a challenge for planning because I didn’t know what her progression was going to look like, so was I going to need more medical supplies or what kind of medical supplies?  

[00:05:49] And in addition, I didn’t receive any formal training as a caregiver. So, sometimes I bought things thinking they would be helpful, and they ended up not being helpful. So, then I had to navigate having a whole bunch of medical stuff, wanting to get them to the right other care partners, but really not knowing how to go about doing that while also caring for my mom.  

[00:06:13] Allie: Let’s talk about the choice to leave your job to care for your mother. What was that like for you from a financial perspective?  

[00:06:20] Patti: Yeah, so I never thought that I would quit teaching. I always had wanted to be a teacher and that was just my passion, but my mom moved in with me and I tried to continue working and caring for her for, I did that for about a year, a year and a half, and it was just too challenging. I felt like I couldn’t give a hundred percent to my mom, a hundred percent to my job, and even give myself any time. 

[00:06:50] But by quitting my job, that added in a financial burden. So, my husband and I went from a dual income, no kid life, to one income and how are we going to be able to support my mom with just one income now? The cost of care is just outrageous. 

[00:07:11] So for me, when we were looking to find care for my mom, of course, I went down all the avenues. We looked at in-home care, we looked at private pay, we looked at what insurance could cover. But for my mom to move into a memory care facility because of the amount of care she would need with her dementia and her type one diabetes, it was, we were quoted $14,000 a month and that was just not something that was feasible or really made sense for us. So, there’s this piece around the fact that you can’t afford other care. And the other piece is that it’s just this additional stress on already a stressful situation.  

[00:07:58] Allie: What was more difficult for you personally – the emotional or financial stressors? 

[00:08:03] Patti: I mean, navigating the financial aspect is extremely challenging. I would say that to me, that is a hundred percent more challenging than navigating the emotional, actual caregiving. I think the things that make the financial piece hard is obviously, you’re unpaid as a family caregiver. You have little resources, little support from the government. But there’s also all of these other financial things that you have to be navigating.  

[00:08:24] You have to have the power of attorney for finances. You know, when the person passes you are responsible for paying these and doing their taxes and reaching out to the bank and reaching out to all these different organizations. Today I actually just got off the phone with the benefits department that told me I had, they had overpaid me. When my mom had passed, she had somehow gotten an extra check when my dad had passed, and so then I’m now having to pay back that check, I don’t know, a year and a half later. 

[00:09:05] So, the multitude of phone calls and emails and letters and navigating just those pieces, the, all the account numbers and all the phone numbers and all the social security numbers, it’s, that piece to me was so much more challenging and frustrating and aggravating than the care, right?  

[00:09:27] Like, providing care for my mom was an act of love and was something that we were a partnership, and I was supporting her in that moment, but just the navigating the finances was just not fun in any way. Like, there wasn’t like the silver, beautiful lining. Whereas like with my mom, there was moments of joy, there was moments of laughter. I mean, anyone that’s seen our videos, we were living, we were having fun. None of the finances were fun. [Music] [Laughs] 

[00:10:00] Allie: Patti’s decision to leave her job wasn’t made lightly. As she explained, the expenses associated with providing full-time care for her mother were simply too high, making it financially unfeasible for both her and her husband. She wanted to ensure her mother was given the care she needed, which meant leaving the career she always dreamed of having, all the while remaining acutely aware of the cost of care itself. 

[00:10:30] There’s an undeniable sense of frustration when you must confront the reality of being unable to afford the care your loved one requires while still maintaining professional aspirations and carving out precious personal time.  

[00:10:46] [Music Ends] 

[00:10:46] But Patti’s story around finances and leaving her job to care for her mother is a pretty common one. So common that I wondered how a solution wasn’t already in place to support family caregivers facing this dilemma. Then I found out about CareYaya. 

[00:11:04] [Music] 

[00:11:06] Neal: My name is Neil Shah, and I’m the CEO and co-founder of CareYaya Health Technologies.  

[00:11:12] Allie: When Neil was 35, at the peak of his career, his wife became severely ill with an aggressive cancer diagnosis. He became the primary care partner, taking sabbaticals from work to take her to appointments and care for her. Luckily, she has now been in remission for almost three years, but this experience showed Neil the difficulties of finding affordable care options. And thus, his social enterprise CareYaya was born.  

[00:11:44] [Music Ends] 

[00:11:44] CareYaya functions as an Uber-like technology for caregivers, where you can book a caregiver directly without needing to go through a local care agency, pay big markups or sign contracts, all for the price of $15 an hour.  

[00:12:01] These caregivers are vetted, background checked, and continually reviewed. How does it all work for this price? Uniquely, all of the caregivers on CareYaya’s platform are college students, who are aspiring into healthcare careers. 

[00:12:18] Neal: So, think about our doctors, nurses, physician assistants of tomorrow, physical therapists, occupational therapists. In my biased opinion, this is the best care workforce in the country that is currently not able to participate in the care economy because they’re full-time students and they need to be doing caregiving at flexible hours around their schedules. And because we charge no middleman fees, the caregiver ends up getting paid the full amount that the family pays. So, it’s kind of [Music] win win for both sides.  

[00:12:43] Allie: Neil and I spoke about how in the traditional care economy, one of the reasons many family caregivers take on such a large role in their loved one’s care is due to the hourly cost of career caregivers.  

[00:12:55] According to the Genworth cost of care survey, the national average for in-home care is around $27 per hour. This rate of course fluctuates depending on where you live and the type of training your caregiver has received. This figure becomes particularly daunting when your loved one requires full-time care.  

[00:13:16] Additionally, when individuals seek home care services through agencies, the profits are typically divided between the agency and the caregiver, resulting in higher costs to cover the operational expenses of the company. 

[00:13:30] [Music Ends] 

[00:13:31] Neal: You know, health equity is a key component of our mission. We found in a lot of the public health research that 85 to 90 percent of families are priced out of the care market. So, by offering a very low-cost option, families could engage and get the care they need.  

[00:13:44] [Music] 

[00:13:45] Allie: Neil had a personal story as to why he felt inspired to begin CareYaya, but he understood that he was not alone in this struggle. 

[00:13:54] [Music Ends] 

[00:13:55] Neal: Harvard Business School did this research study called The Caring Company, where they were talking about how employers are failing to meet the care needs of their employees, and they said one in three people are in their career have quit a job due to caregiving needs, and believe it or not, most people think it’s child care, and I think that the U.S. employer system has started to address the child care issues, maybe not perfectly so, but in the last 10-20 years, people have realized that. 

[00:14:16] But interestingly enough, 60 percent of people who quit their job is due to elder care or a spouse with serious illness care. And employers do not offer that at all. It’s the biggest gap in employee benefits. The socioeconomic impact is that people can least afford to interact with the external care industry are the ones who are then quitting their jobs to do the care themselves. 

[00:14:36] Those are the reasons people quit, and I think it’s because the care industry is so expensive. And it’s a direct loss to people of moderate socioeconomic backgrounds who have to leave the workforce to do the care themselves.  

[00:14:46] The statistics are really mind boggling, and I think that this creates a tremendous amount of financial pressure on the family caregiver, it results in career burnout, and then ultimately it results in physical health toll, and I think that’s another underappreciated thing that, one in three people who end up as family caregivers report their own physical health has taken a toll for the worst. So, the societal impact here is massive. It shouldn’t be that way. 

[00:15:09] Allie: So, the work you’re doing is obviously a huge step in the right direction for providing affordable care options in the U.S. But what, in your opinion, needs to evolve for this discourse to gain acceptance and implementation at the government level? 

[00:15:23] Neal: There was a lot of healthcare innovation happening in the 60’s and 70’s, and at that time, the home care industry started evolving and they basically made a very fundamental flawed assumption, in my opinion, that Medicare was never going to pay. So, home care industry optimized their entire business model for the upper echelon of the population. I spend a ton of money on sales, marketing, advertising, and then I have a franchise, a franchisee system where there’s a lot of fees and royalties being paid. 

[00:15:49] That whole construct is basically built on this flawed assumption that I’m never going to partner with and build a scale solution. So, you now put yourself in the shoes of the government, the government looks at that industry and says, why would I ever pay somebody 35 bucks an hour when the caregiver is getting $12? 

[00:16:04] And I think that that’s actually like a circular thing that that’s why Medicare doesn’t pay for home care. Private insurance will reimburse, but the way the current care system is right now, government does not support and I can’t blame him. It’s just way too expensive and it’d be a massive waste of taxpayer dollars to support.  

[00:16:19] So, I think that this results in a, a real problem for family caregivers who are going through this. I think that actually part of what we can do all as a society is normalize the dialogue, then I think we’d be surprised at how many people start talking about their own personal experiences. And then once, I think, that becomes the status quo watch how quickly [Music] the solutions emerge. 

[00:16:42] Allie: While innovative solutions like CareYaya are beginning to take shape, the needs of family caregivers navigating financial and career strains are long standing. So, what are some things that can be done to lessen this burden? 

[00:16:57] Let’s discuss what you can do today first. Have a direct conversation with your loved one’s health care team to see if there are any available solutions that may be just as effective for a more reasonable cost.  

[00:17:11] Work with a social worker or financial navigator to develop a financial plan for caregiving. These professionals are specifically trained and have experience in working through finances for care partnerships.  

[00:17:25] If you’re looking for longer-term solutions, there are many programs and organizations offering crucial support for caregivers. Like the National Family Caregiver Support Program, which extends grants to assist family and informal caregivers within their homes.  

[00:17:42] Additionally, some states like New York and California, have initiated programs like Paid Family Leave, providing caregivers with supplementary income during their caregiving responsibilities.  

[00:17:56] If you’re concerned about losing your job while caregiving, federal workplace protections exist under the Americans with Disabilities Act and the Family Medical Leave Act. 

[00:18:07] We will have even more resources for how to find grants, navigate finances, and getting paid as a caregiver in our show notes. 

[00:18:16] But honestly, it’s not always a walk in the park to make these resources work for you. Certain options might demand extra applications and paperwork to establish eligibility, which can be quite a burden if you’re already juggling work and caring for a loved one.  

[00:18:35] While American society is gradually recognizing the necessity for caregiver support, this evolution is a slow build that will hopefully gain more traction in the years to come.  

[00:18:47] The financial challenges of caregiving cast a shadow over the lives of countless individuals and families. Recognizing the contribution of caregivers and addressing the economic burdens they face, is not only a moral dilemma but one that deeply impacts our socioeconomic system.  

[00:19:05] As the expenses of care take many employees out of the workforce and create additional health stressors on caregivers, it’s our collective responsibility to champion initiatives, policies, and support structures that alleviate the financial strain on caregivers.  

[00:19:22] But I have so much hope for new solutions in the years to come. Innovative new tech solutions like CareYaya can have a hand in reducing costs and increasing accessibility to care options.  

[00:19:35] And conversations around care are beginning to make a difference in legislation on the state and national level. In June 2023, Oklahoma became the first state in the nation to introduce caregiver tax credit to offset costs related to care. While there’s still a very long way to go, this is a great step in the right direction for care partners.  

[00:20:01] We understand that a lot of people learn in different forms, so there will be a corresponding blog to this episode where we fully define the terms and also provide different tips and resources, whether they were mentioned today or in addition to that. So, check it out on empoweredus.org. We’ll link it in the show notes.  

[00:20:19] Also, if you found this episode to be informative and impactful, please share it with anyone else that you think may need to learn about this. It may fill in some of the gaps of their knowledge.  

[00:20:31] We at Empowered Us are committed to advocating for affordable healthcare for all. We look forward to continuing these conversations with patients and experts to both educate and create new solutions. Let’s keep pushing for change together. Take care and see you next time.   

[00:20:49] [Music Ends] 

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