Approximately 53 million Americans provide unpaid care to an adult or child with a disability or illness, according to AARP’s National Caregiving Study, and the average family caregiver spends roughly $7,242 out of pocket every year on expenses that no government program reimburses. But those numbers don’t capture what it looks like when the caregiver is the last person standing — when there is no spouse to split the bills, no sibling to share a shift, no parent to fall back on.
When I sat down with Monique Washington in late March 2026, she was 43 years old, still in her brown UPS uniform from a full day’s route through East Baltimore, and quietly exhausted in a way that had nothing to do with the packages she’d hauled. She had agreed to talk to me about her finances, but she spent the first ten minutes of our conversation talking about her brother, Darius, who is 36. That order of priorities, I would come to understand, tells you everything.
An Accident That Redirected Two Lives
Darius Washington was 25 when a driver ran a red light at the intersection of North Avenue and Greenmount in Baltimore. The collision left him with a traumatic brain injury and limited mobility on his left side. He requires daily assistance with bathing, meal preparation, medication management, and transportation to medical appointments. He was 25. Monique was 24.
Their parents managed much of Darius’s care for the first several years. Then their mother died of a stroke in 2014, and their father followed two years later from complications related to diabetes. Monique became, in her own words and without ceremony, the only person left.
Darius receives Social Security Disability Insurance — SSDI — based on his work record before the accident. His monthly benefit comes to approximately $980. He also qualifies for Medicaid in Maryland, which covers his primary care visits and some home health aide hours each week. On paper, that sounds like a foundation. In practice, Monique told me, it leaves a gap she has been filling with her own paycheck for nearly a decade.
The Costs That Fall Between the Cracks
Medicaid’s Home and Community Based Services waiver in Maryland — which Darius is enrolled in — covers a set number of aide hours per week. According to Maryland’s Medicaid long-term care program, waiver hours are allocated based on assessed need, but those assessments don’t always match what daily life actually requires. When Darius needs more coverage — during a medical flare-up, around appointments that run long, on days his scheduled aide calls out — Monique absorbs it.
She walked me through the monthly ledger the way someone recites a grocery list they’ve memorized by heart. Accessible medical transport to his neurologist — not covered by Medicaid because the appointments don’t meet the specific trip criteria — runs roughly $80 to $120 a month. Adaptive equipment and supplies, including a specialized shower chair that broke last fall and cost $340 to replace, come up regularly. She also pays roughly $200 a month toward a private aide on Saturdays, because the waiver doesn’t cover weekends.
“I’ve stopped adding it all up,” Monique told me. “When I used to add it up, I’d get so angry I couldn’t sleep. So now I just pay what needs to be paid and don’t look at the number.”
A Retirement Account She Stopped Feeding Years Ago
Monique has been a Teamsters member since 2005. Her UPS wages — she declined to give me an exact figure but described them as “decent, more than decent” — come with access to the Teamsters union pension and the option to contribute to a 401(k)-style plan. For the first several years of her career, she contributed consistently. Then her parents got sick, and then they died, and the contributions quietly stopped.
She is candid about the math. The Teamsters pension will pay something when she reaches retirement age, based on years of service. But the additional savings she should have been building — the buffer that would let her retire before 70, or cover an unexpected expense, or take a break — simply doesn’t exist. “I know what the numbers are supposed to look like at my age,” she said. “Mine don’t look like that.”
What makes Monique’s situation particularly acute is the immobility of her caregiving role. She cannot take a higher-paying position that would require different hours, because her schedule is built around Darius’s care windows. She cannot consider relocating for a career opportunity for the same reason. She has not taken a vacation since 2019 — not a real one, she specified, meaning one where she actually left Baltimore and didn’t spend it managing his care remotely.
What She Found — and What She Didn’t
In early 2025, Monique told me she finally sat down with a benefits navigator through a Maryland nonprofit that assists disability families. It was, she said, the first time she had ever spoken to anyone professionally about the financial architecture of her situation. What she learned was a mix of relief and frustration.
On the relief side: Darius may qualify for an ABLE account — a tax-advantaged savings account for people with qualifying disabilities that doesn’t count against SSI asset limits. Contributions to ABLE accounts can be used for disability-related expenses, including transportation and housing, and the account balance up to $100,000 doesn’t affect SSI eligibility. This was news to both of them.
On the frustration side: Darius does not qualify as Monique’s tax dependent because his SSDI income exceeds the IRS gross income threshold for dependency — which sits at $5,050 for the 2025 tax year. That single eligibility wall, she told me, closes off the one tax relief most people in her position assume they can access. “The navigator looked genuinely sorry when she told me that,” Monique said. “She said it happens all the time with SSDI. The benefit that helps him is the same thing that disqualifies me from the credit.”
A Quiet Kind of Sacrifice
By the time I wrapped up my conversation with Monique, it was past 7 p.m. She had a bag of groceries for Darius’s week in her trunk and a doctor’s form she needed to fax before Thursday. She is not looking for sympathy, and she made that clear more than once — slightly irritated each time I circled back to how she was doing personally, as opposed to what the system was or wasn’t providing.
She said the ABLE account conversation gave her something concrete to move on, and the Medicaid reassessment request was already in progress. Whether those steps actually result in more covered hours — or whether the reassessment finds Darius’s needs unchanged — she doesn’t know yet. The outcome, as of this writing, remains open.
What is not open is the retirement gap. The years she didn’t contribute are gone. The ABLE account helps her brother, not her 401(k). The Teamsters pension will provide a base, but the ceiling she might have reached with consistent additional savings is simply lower now than it would have been. She knows that. She made the calculation consciously, if not happily.
“Darius didn’t choose what happened to him,” she told me, gathering her things as our interview ended. “And I didn’t choose to be the last one standing. But here we are. So I do what needs doing, and I figure out the rest later. That’s always been the plan — figure it out later.” She paused. “I just hope later comes.”
Monique Washington is one of tens of millions of Americans navigating the space between what disability benefits provide and what daily caregiving actually costs. Her story isn’t exceptional. That’s precisely the point.
Related: My Partner Earns $140K and I Earn $18K — Here’s What That Does to Our Joint Tax Return
Leave a Reply