Have you ever done the math on what it would actually cost to replace you — not just your paycheck, but every unpaid role you fill — and felt genuinely frightened by the number? When I sat down with Monique Washington on a Tuesday afternoon in Baltimore, she had just come off a ten-hour delivery shift. She set her keys on the kitchen table and said, almost by way of greeting: “Nobody ever asks about the people behind the people.”
She meant her brother, Marcus. She meant herself. She meant the invisible economy of caregiving that doesn’t show up in any government statistic, doesn’t earn a tax credit, and doesn’t stop when you’re tired.
A Family Reshaped in an Instant
Marcus Washington was 25 when a driver ran a red light in East Baltimore and changed the trajectory of an entire family. The accident left him with a traumatic brain injury and permanent physical limitations that require daily assistance. He was approved for Social Security Disability Insurance — SSDI — within about 18 months, which Monique described as “a miracle and a drop in the bucket at the same time.”
Their parents passed away within four years of each other, their mother in 2017 and their father in 2021. Monique, the oldest of three and the only sibling still in Baltimore, became the default caregiver. There was no formal conversation, no legal arrangement. It just happened the way things happen in families — quietly, and completely.
Marcus receives SSDI and is enrolled in Medicare, which kicked in after his 24-month waiting period following disability approval — a timeline Monique said felt “like they were testing how long we could survive.” His Medicare and Medicaid combination covers significant ground, but not all of it. Not the specialized wheelchair cushions that Medicare classifies as non-covered accessories. Not the rideshare costs when the paratransit van doesn’t show up. Not the home aide hours that exceed his Medicaid waiver limit on the weeks Monique works overtime.
The Uncounted Costs of Caregiving
Monique earns a solid wage — she’s been with UPS for 14 years, is a Teamsters union member, and clears enough annually that she doesn’t qualify for most means-tested assistance. On paper, she looks stable. In practice, she estimates she spends somewhere between $600 and $900 a month supplementing Marcus’s care above what his benefits cover.
That number includes the out-of-pocket transportation costs when paratransit fails, the co-pays Medicare doesn’t absorb, the weekly grocery runs she makes because Marcus can’t, and the occasional private aide hours she purchases when her shift schedule doesn’t align with his Medicaid-covered care hours. It’s not a number she’s formally tracked. She said she stopped tracking it because the total made her anxious.
What she has stopped doing, more consequentially for her own future, is contributing to her Teamsters pension supplement and a 457(b) account she opened in her early 30s with every intention of funding aggressively. She last made a meaningful contribution in late 2022. Before that, contributions had already become irregular, reduced whenever a large caregiving expense hit.
What Social Security Will — and Won’t — Mean for Her
When I asked Monique whether she had looked at her own projected Social Security retirement benefit, she pulled out her phone and showed me a screenshot of her my Social Security statement. Her estimated benefit at full retirement age — 67 for her birth year, under current law — was listed at approximately $2,140 per month, assuming she continued working at her current earnings level until then.
That figure would drop meaningfully if she reduced her hours, changed to a lower-paying role, or stopped working altogether before 67. Social Security retirement benefits are calculated based on a worker’s 35 highest-earning years. Gaps in work history, or years of reduced income, pull that average down. For Monique, who is 43 now, 24 more years of full earnings would protect that estimate — but her caregiving obligations make that projection feel uncertain at best.
Monique told me she had never thought carefully about what Marcus’s SSDI benefit would look like if she were no longer able to supplement his care. His benefit is tied to his own work record before the accident — he worked for about three years before he was injured. She doesn’t know the exact figure off the top of her head, only that it has received annual cost-of-living adjustments. The SSA’s COLA for 2025 was 2.5%, following a 3.2% adjustment in 2024 — modest increases that haven’t kept pace with the actual cost growth Monique has observed in medical supplies and transportation.
The Life She Has Put on Hold
Six years. That’s how long it’s been since Monique Washington took what she’d call a real vacation. She had to clarify what she meant by “real” — she’s been to a cousin’s wedding in Philadelphia, been to a birthday weekend in D.C. What she hasn’t done is leave for more than two nights without someone else coordinating Marcus’s care, which requires arranging and funding a private aide for the duration.
She’s also, she mentioned almost in passing, turned down two shift advancement opportunities at UPS that would have meant a pay increase but also irregular hours she couldn’t predict around Marcus’s care schedule. She doesn’t frame these as sacrifices, exactly. She frames them as logistics. But they are also decisions that compound quietly over time.
There’s a quiet resentment underneath her composure that she acknowledged only once during our conversation, and then moved past quickly. She said she had spoken with a social worker at Marcus’s care facility last year, who mentioned that a Medicaid Home and Community-Based Services waiver might allow for expanded aide hours — and that Monique should look into whether Maryland’s specific waiver programs had expanded capacity. Monique said she hadn’t followed up yet. When I asked why, she was quiet for a moment.
“Because looking into things takes time and energy,” she said. “And I’m usually out of both.”
Where Things Stand Now
Monique has not made a retirement contribution in over three years. Her 457(b) account, she said, has some balance — “not nothing, but not enough” — from the years she was able to contribute in her late twenties and early thirties. Her Teamsters pension will provide something in retirement, depending on years of service and the plan’s formula. She acknowledged she hasn’t sat down and looked at the projected pension number in a long time.
She is 43. She has, in the most basic arithmetic sense, time to course-correct — if the circumstances that created this situation change. Marcus is 36. His condition is stable but permanent. The system that was designed to support him is doing a partial job, and she is doing the rest. That arrangement has no end date on it.
Before I left, I asked Monique if there was anything she wished more people understood about her situation. She thought about it for a long time — long enough that I stopped writing and just waited.
“I think people hear ‘he gets disability’ and they think the problem is solved. Like the government took care of it. And I just want someone to acknowledge that the government took care of part of it. And that the rest of it — the part that didn’t get taken care of — that part has a face. It has my face.”
Monique Washington’s situation is not unusual. According to the AARP Public Policy Institute, roughly 53 million Americans provide unpaid care to a family member, with a disproportionate share absorbing out-of-pocket costs that are never reimbursed. For those of working age doing so while managing their own careers, the long-term retirement consequences are often invisible until they aren’t. What Monique described — clearly, steadily, without apparent self-pity — is a structural problem dressed up as a personal one. She drove to work the next morning at 6 a.m. She’ll do the same tomorrow.
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