Marilyn remembers vividly the day she toured three nursing homes for her elderly mother. “Each one was very functional, but they seemed cold and lonely, institutional,” she said. “At the end of the day I just cried. I couldn’t put my mother in one of those places. And the cost was outrageous. Eventually, I decided to take her in myself.”
What Marilyn didn’t realize was that even having her mother at home would turn into a significant financial burden. The extra help required from regular nurse aid visits, medical supplies, home modifications and other necessities all added up. “It really put a financial strain on my family,” Marilyn said.
Most family caregivers underestimate the true costs of home caregiving. Calculating them in advance can help you set realistic expectations—and better assess whether caregiving at home is feasible.
Out-of-Pocket Costs
Out-of-pocket expenses for family caregivers remain substantial. According to AARP, in recent estimates caregivers spend around $7,200 per year out of pocket on care-related expenses. Nearly 80 % of caregivers report recurring out-of-pocket costs.
These costs are not limited to purely medical needs. Home modifications, transportation, supplies, extra utilities, assistive devices, and caregiving services all play a role. In 2024, the cost of hiring direct care workers ranged from $5,700 to $6,300 per month expenses many family caregivers must bear themselves.
Earlier AARP data estimated that out-of-pocket spending accounted for 26 % of caregivers’ income, with household costs (e.g. rent, utilities, modifications) making up 52 % and medical costs about 17 %.
Caregivers often absorb a broad spectrum of costs far beyond medications or doctor visits.
Lost Wages, Career Impact & Opportunity Costs
In addition, caring for a loved one often exacts a steep toll on employment, wages, and career progression.
A 2023 study published in Value in Health found that among employed caregivers, nearly 1 in 4 (23.3 %) reported absenteeism or presenteeism (reduced productivity), and those affected saw a one-third reduction in work performance on average. This equated to an estimated $5,600 in lost productivity per affected employee annually.
The hidden cost of caregiving (time, foregone opportunities, emotional burden) is increasingly recognized in the health literature. A 2024 concept analysis in PMC described how health impacts, lost opportunities, and invisible labor aggregate into a heavy burden on caregivers.
Caregiver Support Is Building
Policy efforts are gaining traction. In 2024, the Medicare Physician Fee Schedule was updated to allow payment for caregiver training services, now available via telehealth.
Advocacy is building for a federal “Caregiver Tax Credit” to offer relief to caregivers, a measure supported by organizations like AARP.
Marilyn’s experience is, unfortunately, common. In short: caregiving may require cutting hours, accepting demotions, leaving one’s job, or missing out on raises and promotions. Many caregivers sacrifice long-term financial health to manage immediate demands.
Moreover, the invisible costs such as time, stress, lost income, career disruptions can outpace what many families expect. Without proper planning or support, caregivers may find themselves juggling financial hardship with emotional and physical strain.
Plan and Prepare
So what’s the best approach to Caregiving? Start planning early!
Here’s what you can do now to get ahead:
Start a “caregiving fund.” Even modest monthly savings can help absorb unexpected costs.
Inventory existing plans. Find out whether your loved one has long-term care insurance, veteran’s benefits, or other protections in place.
Check for caregiver financial assistance. Medicaid in some states allows family members to be paid caregivers; VA programs sometimes provide caregiver stipends.
Use employer resources. Ask whether your employer offers backup care, concierge care, flexible scheduling, or paid caregiver leave. Trends suggest more companies are considering these benefits.
Pursue tax credits or deductions. Keep abreast of evolving federal and state policies.
Bundle and track costs. Document home modifications, medical supplies, extra utilities, and transport—these may qualify for deductions or reimbursements.
Leverage training and support. Use telehealth caregiver training (now reimbursable under Medicare) to enhance your efficiency and resilience.
Build a caregiver network. Rotate duties with siblings or friends; engage respite services to protect your own health.
Ultimately, choosing to become a caregiver is a profoundly personal decision. The rewards like strengthening bonds and preserving a loved one’s dignity can be deeply meaningful. The sacrifices, however, whether emotional, financial, or physical, are often more demanding than expected. By planning ahead, doing your research, and maintaining open, honest conversations with both your family and your care recipient, you can better navigate the challenges while honoring the connection that makes caregiving worthwhile.
References:
1. Rainville, Chuck, Laura Skufca, and Laura Mehegan. Family Caregiving and Out-of-Pocket Costs: 2016 Report. Washington, DC: AARP Research, November 2016. https://doi.org/10.26419/res.00138.001
2. https://www.caregiver.org/caregiver-statistics-work-and-caregiving
3. The MetLife Market Survey of Long-term Care Costs, 2011: https://www.aarp.org/content/dam/aarp/livable-communities/old-learn/health/the-metlife-market-survey-of-nursing-home-assisted-living-adult-day-services-and-home-care-costs-2011-aarp.pdf
4. The Fidelity Retiree Health Care Cost Estimate, 2018. https://www.fidelity.com/viewpoints/personal-finance/plan-for-rising-health-care-costs
5. AARP https://www.aarp.org/pri/topics/ltss/family-caregiving/aarp-research-insights-caregiving/
