Have you ever done the math on what it would cost to walk away from your own future so someone you love could survive their present? Monique Washington has. She’s been running those numbers in her head for thirteen years, and she still doesn’t like what they add up to.
When I sat down with Monique Washington in the living room of her rowhome in East Baltimore on a Thursday afternoon in late March, the first thing I noticed was how exhausted she looked — not dramatically, not in a way she’d ever admit, but in the quiet, compressed way of someone who has been running on obligation for so long they’ve forgotten what rest feels like. She was still in her UPS uniform. She’d come straight from a shift.
A Life Redirected by a Single Phone Call
Monique is 43 years old and a veteran driver for UPS, represented by the Teamsters. She earns a solid union wage — well above the national median — and by most external measures, she looks financially stable. The reality, she told me, is far more complicated.
In 2012, her younger brother Marcus was 25 years old when a driver ran a red light and hit his car at a Baltimore intersection. Marcus survived, but the traumatic brain injury and spinal damage he sustained left him needing daily assistance with mobility, personal care, and medication management. He was approved for Social Security Disability Insurance within about fourteen months of applying — a relatively smooth process, Monique acknowledged — and he also qualified for Medicaid.
But their parents died within three years of each other — their father from a stroke in 2017, their mother from cancer in 2019. Monique became Marcus’s sole caregiver and, effectively, his case manager, transportation coordinator, and financial backstop. She was 36 years old when that full weight landed on her. She hasn’t stopped carrying it since.
“I don’t regret taking care of Marcus. I want to be clear about that,” she told me, her voice firm. “He’s my brother. But I also didn’t get a choice in how this went. Nobody asked me what I could afford. It just became my job.”
What SSDI Pays — and What It Doesn’t
Marcus receives a monthly SSDI benefit, and Medicaid covers his primary medical care. On paper, those two programs sound like a comprehensive safety net. In practice, Monique has learned exactly where the net develops holes.
Medicaid in Maryland covers Marcus’s physician visits, hospitalizations, and a set number of personal care attendant hours per week. But those hours, Monique told me, fall short of what Marcus actually needs — especially on days when she works a ten-hour driving route. She fills the gap by hiring a supplemental aide privately, paying roughly $18 to $22 an hour out of pocket for coverage that Medicaid won’t authorize.
Accessible transportation is another expense the programs don’t fully absorb. Marcus qualifies for Maryland’s Medicaid non-emergency medical transportation for doctor’s appointments, but getting him to recreational activities, community programs, or family events falls entirely on Monique — which means a modified vehicle she saved years to buy and maintains herself. Then there are the medical supplies: specialized cushions to prevent pressure wounds, adaptive equipment, incontinence products that Medicaid covers partially but not completely.
According to the Social Security Administration, SSDI is designed to replace a portion of lost wages for individuals who can no longer work — it is not structured to cover every disability-related cost, and it was never intended to function as a family caregiver subsidy. That distinction matters enormously for people in Monique’s position.
The Retirement She Hasn’t Started
This is where Monique’s story takes a turn that she doesn’t love talking about. As a Teamsters member, she has access to a solid pension — one of the few remaining defined-benefit pension structures in American labor. She’s also eligible to contribute to a 401(k). For years, she contributed the minimum necessary to capture her employer match. Then, around 2021, the supplemental care costs for Marcus spiked when his primary attendant left, and Monique made a choice she describes with a flatness that suggests she’s still working through its implications: she stopped her 401(k) contributions entirely.
“I told myself it was temporary,” she said. “That was four years ago.”
She cannot change shifts to take a higher-paying overnight route because Marcus’s care schedule is built around her current hours. She has looked into relocating to a lower cost-of-living area — she mentioned a cousin in rural Virginia — but Marcus’s Medicaid is Maryland-based, and transferring that coverage across state lines is not a simple process. She looked into it in 2023 and concluded it wasn’t feasible. So she stays.
Monique hasn’t taken a real vacation in six years. The last one was a long weekend in Ocean City, Maryland, in 2019, before her mother died. “I keep thinking, next year I’ll figure something out,” she told me. There was no self-pity in her voice when she said it. That, somehow, made it harder to hear.
What She Wishes She Had Known Earlier
When I asked Monique what she would tell someone just entering this kind of caregiving situation — a sibling, an adult child, anyone suddenly responsible for a disabled family member — she was quiet for a moment.
She mentioned Maryland’s Community First Choice program under Medicaid — a waiver program that can expand home and community-based services for disabled individuals. A social worker at Marcus’s neurologist’s office flagged it for her two years ago. Marcus was added to a waitlist. He is still on it.
She’s not wrong. Research cited by the Family Caregiver Alliance has consistently found that women provide the majority of unpaid caregiving in the United States and are more likely to reduce their own work hours or exit the workforce — with lasting effects on their retirement income and Social Security earnings records.
Where Monique Stands Today
As I was leaving, Monique walked me to the door and pointed to a whiteboard mounted in her hallway — Marcus’s weekly schedule, color-coded by caregiver shift and appointment type. It was meticulous. She’d built a system out of necessity, and the system worked. Marcus, she told me, is doing as well as can be expected. He has a community of care. He is not in an institution. She made that happen.
What she hasn’t made happen is a clear picture of her own future. She has a Teamsters pension coming — she’ll be eligible for a reduced benefit if she steps back at 55, a full benefit closer to 62 or 65 depending on the plan’s provisions. Her Social Security record, she acknowledged, has years of solid earnings — the UPS wages are well documented. But the 401(k) she stopped funding sits at roughly $31,000, a number she mentioned with a wince that she immediately smoothed over.
“I’ll figure it out,” she said. “I always do.” She said it like someone who has been saying it for a long time and is beginning to wonder whether figuring it out is the same as being okay.
Monique Washington is not a cautionary tale, and I don’t want to present her as one. She made choices that were, by her own account, the only choices she felt she could make. What her story reveals is a structural gap — between what disability benefit programs provide and what families actually absorb — that doesn’t show up in policy discussions because the people bearing the cost are too busy managing caregiving schedules to advocate for themselves.
She walked back inside before I reached my car. I could see through the window that she was already checking her phone — probably Marcus’s aide, probably something that needed handling. The whiteboard behind her was the last thing I noticed before the door closed.
Related: I Ignored My Social Security Statement for Years — the Number I Finally Saw Changed Everything
Related: Her Brother’s SSDI Check Grew $24 After the 2025 COLA — His Monthly Care Gap Is Now Over $600
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