Carla Romagnano starts her day in the early morning hours, working full time as a bookkeeper and hiring manager for Albertsons grocery store chain in Coeur d’Alene. After her commute home, she sits in her car in her driveway for a few minutes to decompress before heading inside for her other full time job: caring for her 83-year-old mother, who has dementia.
“My mom always comes first, but I’m exhausted,” Romagnano told Scripps News. Her mother has long-term care insurance, but they estimate that will run out in a matter of months, so there’s endless stress trying to figure out finances to cover a part-time caregiver and medical costs.
“I’m constantly worried and wondering if I’m doing the right thing,” Romagnano said. “I’m trying to do the best I can with the knowledge I have and am trying to stretch her money so she can enjoy life right now.”
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Romagnano estimates she’s spent thousands of dollars out of pocket to support her mom, joining the 63 million families across America who, as the population ages, are quietly footing the bill for gaps in the nation’s elder care system. Changes to Medicare for 2026 will make some of those gaps larger, marking the second year in a row that major Medicare insurers are eliminating some plans and popular benefits, along with increased deductibles.
“We are low-income and we can't afford all of that,” 73-year-old Joyce Rodgers in Ohio told Scripps News. She says this year’s Medicare enrollment season is more stressful than ever. “When you’re paying your rent, when you’re paying out of pocket for different medications and then you have eat too... and everything is going up, what do you do?”
While there is new coverage to lower out-of-pocket costs for some more expensive drugs – you can run your medications through the Medicare.gov site to double-check your expected costs – there are changes that may complicate other types of coverage. For example, a new pilot program will require prior authorizations for certain medical devices and procedures, which can be a long process. And, Medicare Advantage plans are increasing maximum out-of-pocket costs in many of their plans, while also tightening access to supplement benefits that used to be standard, like reimbursement for transportation to medical appointments and meals during hospital stays.
“Things are changing rapidly right now because of the changes at the federal level, changes in funding. The services that were there a year ago are not there now,” said Jayla Sanchez-Warren, director of the Area Agency on Aging for the Denver Regional Council of Governments.
In an interview with Scripps News, Sanchez-Warren noted navigating this season of enrollment has been harder because previous federal resources would allow for state-by-state training to ensure cohesive understanding of the changes in plans across the board. But because of federal layoffs, and the government shutdown, those trainings didn’t happen this year.
“It’s so overwhelming to figure out where to even plug into the system,” Cindy Koch told Scripps News. Koch is the founder of Aging 5280, a Colorado-based organization that helps families navigate senior care. She says she’s seeing more Gen X families caught in what’s referred to as the “sandwich generation,” as they care simultaneously for their children and aging parents.
“It’s a lot of stress on them, it’s a stretch on your time. That time is worth a lot of money,” Koch said.
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A recent AARP report estimates that family caregivers spend $7,242 a year on average out of their own pocket, amounting to about 26% of their income.
“It is a difficult time to be a caregiver, no question about it,” Sanchez-Warren said. “It’s emotional, it's physical. It’s always been a financial strain, but not to this level.”
“Caregivers are the invisible backbone of our broken long-term care system and economy, and too many are paying the price out of their own pockets, risking their own financial security by taking on more debt, using up savings, and leaving bills unpaid,” Nancy LeaMond, AARP executive vice president and chief advocacy & engagement officer, wrote in a statement.
AARP and the National Alliance for Caregiving emphasize federal legislation like the Credit for Caring Act would be life changing, providing a federal tax credit of up to $5,000 for working caregivers. They also point to recently introduced legislation that would expand uses for flexible spending or health savings account uses.
Community resources, like your local agency on aging, or similar companies to Aging 5280, exist to help, connecting families with support groups, opportunities for transportation, and transitioning to senior living facilities.
Koch, frustrated with the looming uncertainty around Medicaid coverage, recently organized a fundraiser in the Denver-Metro area, raising tens of thousands of dollars for A Little Help, an organization that supports the elderly aging in home.
As you develop your plan for enrollment, you can find unbiased Medicare advice from the State Health Insurance Assistance Program in every state, and this website has links for each of them. The nonprofit Medicare Rights Center also hosts a national helpline.
