Roughly 53 million Americans provide unpaid care to a family member with a disability or chronic illness, according to the CDC. Most of them are women. Most of them are slowly draining their own financial futures without anyone counting the cost. Monique Washington is one of them — and when I sat down with her at a diner on Harford Road in Baltimore on a Tuesday afternoon, she had just finished a ten-hour route and was still in her UPS uniform.
She was not looking for sympathy. That became clear within about four minutes.
The Call Nobody Plans For
Monique Washington was 32 years old when her brother Marcus, then 25, was struck by a driver who ran a red light in West Baltimore. The accident left Marcus with a traumatic brain injury and partial paralysis. He survived. He requires daily personal care assistance, modified transportation, and a suite of medical supplies that, Monique told me, Medicaid covers incompletely at best.
Within three years of the accident, both of their parents were gone — her father to a heart attack, her mother to cancer. The caregiving role, which had been shared, collapsed entirely onto Monique’s shoulders. She was 35.
She has not taken a real vacation in six years. She cannot transfer to a different shift — Marcus’s home health aide is only available during the hours that align with her current route. She has turned down at least two supervisory positions that would have meant irregular scheduling. Each of those decisions made sense in isolation. Together, they form a wall around her life that she rarely talks about out loud.
What SSI and Medicaid Actually Pay — and What They Don’t
Marcus receives Supplemental Security Income (SSI), the federal program designed for low-income individuals who are aged, blind, or disabled. The maximum federal SSI benefit in 2026 is approximately $967 per month. Maryland provides a small state supplement, bringing Marcus’s total to roughly $1,040 monthly. That sounds like a starting point. Monique described it more as a gesture.
As Monique explained it to me, the uncovered costs accumulate in predictable categories. Medicaid pays for some home health aide hours but not all of them — she supplements with roughly $350 a month for additional aide coverage on weekends. Accessible transportation to Marcus’s medical appointments runs another $180 to $200 monthly, because the paratransit scheduling in their area is, in her words, “a mess.” Medical supplies — wound-care materials, specialized seating cushions, incontinence products — add another $200 to $250 per month that Medicaid either doesn’t cover or takes weeks to authorize.
“I learned real fast that I can’t just hand him money,” Monique told me. “So I pay the people directly. I’ve become his unofficial case manager and I don’t get paid for that either.”
The Retirement Account She Stopped Feeding
Monique is a Teamsters member. Her union contract includes participation in the IBT (International Brotherhood of Teamsters) pension — a defined benefit plan that will pay her something in retirement regardless of what she contributes personally. She is quick to acknowledge that. But she also opened a Roth IRA in her late twenties, contributed modestly for a few years, and stopped entirely in 2021 when Marcus’s care costs rose sharply following a secondary health complication.
Her Social Security work record is intact. According to the Social Security Administration, workers earn up to four credits per year, and most people need 40 credits — ten years of work — to qualify for retirement benefits. Monique has been employed continuously since age 19. Her future Social Security benefit, whenever she claims it, will reflect decades of payroll contributions. She knows this. It does not entirely reassure her.
She is not wrong to be uncertain. Social Security’s long-term funding picture has been a subject of congressional debate for years. The program’s trustees projected in their most recent report that the combined trust funds could be depleted by the mid-2030s without legislative action — which would trigger an automatic benefit reduction of roughly 17%, not a program shutdown, but a meaningful cut. That is not a guarantee, but it is a number Monique had looked up on her own.
The Parts She Doesn’t Say Out Loud
There is a quiet resentment underneath Monique’s practicality. She does not direct it at Marcus — she was emphatic about that. She directs it, when she directs it anywhere, at the system that prices disability care the way it does and then expects families to quietly absorb the difference.
I asked her whether she had ever looked into whether she herself might qualify for any caregiver support programs. She laughed — not bitterly, but with the exhaustion of someone who has already run that errand.
Maryland does have a Medicaid-funded program that allows some family members to be compensated as paid caregivers under a consumer-directed care model. Monique looked into it. The compensation rate — approximately $13 to $15 per hour for a family caregiver — would not come close to replacing lost income from the supervisory positions she declined, and the paperwork requirements felt, she said, like a part-time job in themselves.
She has not spoken to a financial counselor. She has not filed for any formal caregiver support designation. She has not, in her own words, “stopped moving long enough to sit down and figure it out.” That is not irresponsibility. It is the arithmetic of caregiving — the math where every hour spent planning for yourself is an hour not spent managing someone else’s crisis.
What She Wants People to Understand
When I asked Monique what she wished more people knew about families like hers, she thought about it for a long moment. The diner was starting to fill up with the after-work crowd. She had to be home by seven to relieve the aide.
The gap she describes — between what government programs provide and what disabled individuals actually need to live with dignity — is not unique to her situation. According to the Medicaid.gov program documentation, home and community-based services vary significantly by state, and families frequently report coverage gaps in personal care hours, durable medical equipment, and transportation. Monique fills that gap with her own paycheck, her own time, and her own postponed plans.
She drove away in a car with a handicap placard in the windshield — Marcus’s, for when she takes him to appointments. She has been doing this for eight years. She will probably do it for eight more. At 43, she is not looking for rescue. She is looking, she told me at the end of our conversation, for someone to acknowledge that the cost is real and that she is paying it.
The Social Security system she has paid into since she was a teenager will eventually pay her back. Whether that will be enough — whether two income streams and zero personal savings will add up to the retirement she once imagined — is a question she is not ready to answer. She has other things to do first.
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