When the System Depends on Caregivers but Punishes Them for Staying Afloat

Mark Fukae
3 days ago
4 min read

Teal graphic with yellow circle featuring the title “Our Lives On Hold” and a quote about caregiver policy, alongside symbolic imagery of the U.S. Capitol and bureaucratic burden. — “Our Lives On Hold” - a visual callout to the emotional and policy toll of caregiver neglect in American systems.

On heartbreak, governance flooding, and why caregivers cannot wait for federal stability

By Mark Fukae - Director of Advocacy - Professionals Who Care

This week, I'm writing from a place I haven't written from before - not just as an advocate or policy analyst, but as someone whose household is about to be turned upside down, and whose heart is breaking every single day.

My wife has worked for the same company for over twenty years. And now, they're accelerating the shutdown. What we thought would happen at the end of 2026 is being pushed to spring or summer. Maybe sooner.

At the same time, I'm losing my employer-based healthcare. I'm facing new workplace costs. And I'm still caring for my mother, whose dementia progresses relentlessly.

This is what it looks like when the system depends on caregivers but punishes them for staying afloat.

When Stability Becomes a Luxury

We're having the conversations no couple wants to rush: Does she retire? Does she try to find something new? What does "something new" even look like after twenty-plus years in one place?

And what does it mean for a household when the stable, predictable income you've relied on for decades may be cut in half sooner than expected?

My own job has become a case study in why Colorado needs the CARE Act.

I had remote accommodations in 2022 and 2023 - accommodations that worked for my employer, my team, and my mother's care. But in 2024, I was told to return to the office or "find another job."

That's not a policy shift. That's constructive dismissal dressed up as a workplace preference.

Now I'm losing employer-based healthcare and facing new costs - parking fees that haven't been implemented yet, but are coming. On paper, it's a small thing. In reality, it's another quiet pay cut for caregivers already stretched thin.

This is what caregiving looks like in America: households destabilized by employer decisions, federal uncertainty, and state systems that treat caregiving as a personal inconvenience instead of a public necessity.

The Federal Trap: "You're Exempt, But Prove It Every Six Months"

The federal government loves to say caregivers are "protected."

Under new federal Medicaid rules, caregivers are technically exempt from eighty-hour monthly work requirements. But the exemption isn't automatic. Caregivers must prove their status every six months.

This is the part lawmakers never experience:

Gathering medical documentation every six months
Navigating Medicaid redeterminations while managing dementia care
Choosing between a job shift and a doctor's appointment
Fearing lost coverage because a form was mailed to the wrong address

If a law affected lawmakers personally, they wouldn't pass it. If they had to file caregiver exemption paperwork every six months, the rule would disappear overnight.

A Government Flooded With Crisis

There's something else happening right now: the sheer volume of crises coming out of the federal administration. The pace is relentless. Every week brings a new directive, a new legal fight, a new enforcement action, a new controversy that wipes out the last one before anyone has time to respond.

Congress simply cannot keep up.

It's not about individuals. It's about institutional capacity.

Congress is a deliberative body - slow by design. But the modern executive branch can generate actions faster than Congress can process them. The result is what we might call "governance flooding": a nonstop stream of developments that overwhelm the system.

For caregivers, this matters deeply. We need stability in healthcare, employment, and community life. But when the federal system is overwhelmed, that stability evaporates. Caregivers are left navigating shifting rules, unpredictable enforcement climates, and a political environment that changes by the hour.

This is why state-level, non-punitive, stability-focused policies like the CARE Act are essential. Because caregivers cannot wait for Congress to regain its footing.

My Heart Breaks a Little More Every Day

I need to say something plainly: my heart is breaking every single day.

Not just from caregiving, or the uncertainty in my own household, but from the constant stream of violence and confrontation happening across the country. The recent reports out of Minneapolis involving ICE enforcement actions. Communities shaken. Families scared. The tension rising.

For caregivers, this kind of instability hits differently.

We're already carrying so much - the medical coordination, the emotional labor, the financial strain, the daily vigilance. When the world outside becomes more volatile, it adds another layer of weight onto people who are already stretched thin.

Caregivers are the ones who keep households functioning when everything else feels uncertain. Caregivers are the ones who absorb the stress so others don't have to. Caregivers are the ones who hold the line when systems fail.

And yet, we're the ones most often left out of policy conversations.

Caregivers cannot carry the emotional weight of a country in turmoil AND the bureaucratic weight of policies designed without us in mind.

Why the CARE Act Matters

When federal systems destabilize, state protections become essential.

The Colorado CARE Act makes caregiver status a protected class. It requires reasonable accommodations. It prohibits constructive discharge. It mandates documentation for denials. It strengthens ADA enforcement. It costs the state nothing.

And critically, it's designed for this moment of instability. Budget-neutral. TABOR-neutral. Works in every scenario.

It's a law designed by someone who has lived the consequences of bad policy - not someone insulated from it.