Mark Fukae | Director of Advocacy, Professionals Who Care | Founder, CASI Registered Colorado Volunteer Lobbyist | mark_fukae@casiadvocacy.org | www.casiadvocacy.org
This week’s episode of The Revenue Neutral Caregiver podcast is available now on Substack.
The glasses are in the microwave again.
My wife knows this before she checks - the way you know things after ten years of learning someone’s new geography. Her mother’s reading glasses. Rose’s glasses. Sometimes both pairs, nested together on the turntable like they’ve been waiting for someone to notice. She doesn’t say anything. She takes them out, sets them on the counter, and starts the coffee.
This is morning in a multigenerational household. This is what caregiving looks like before the world wakes up. And this is the part of the story that doesn’t appear in any dataset, any HR system, any accommodation framework, any protected class statute in the State of Colorado or the United States of America.
I am in a downtown office by the time the glasses are found. I returned to office because my employer’s policy required it - a broad, sweeping HR directive with no mechanism to account for what I was returning from. The policy did not know about Rose. Policies don’t. That is the problem this piece is about.
Rose came to live with us in 2016.
She fell in her condominium. There was no one there to help. My wife and I stood in the space that had been her mother’s home and understood, without having to say it, that she could not live alone anymore. We made the decision the way most caregiving decisions are made - not with deliberation, not with a plan, not with any knowledge of what we were entering. We made it because it was the right thing to do and because there was no one else. She moved in. We became a caregiving household.
We didn’t know that’s what we were, because there is no name for it in the law. There is no protected class. There is no accommodation framework. There is just the life you are now living and the life you were living before and the distance between them that you measure in small adjustments every morning before the coffee finishes brewing.
The dementia is progressive. That word - progressive - means the geography of Rose’s world does not settle into a stable configuration that we map once and memorize. It changes. Each new threshold crossed requires its own cartography, and we are always learning the map slightly behind the territory.
For years, the coats and jackets have been migrating. Rose moves clothing from the front closet into her own - quietly rearranging the household’s outer layer to match her inner sense of what belongs where. We adapted. We learned which closet to check first. It became part of the navigation, absorbed into the morning routine without comment.
What is happening now - this week, this most recent progression - is different. My own jackets have begun disappearing from the front closet. Not moved somewhere we know to look. Drawn into her orbit, into a location we haven’t found yet. We are adjusting to this. We haven’t fully mapped it yet. That is what “progressive” means in practice: the adjustment is never finished, because the change is never finished.
The mail followed the same arc. She used to bring it to us - would find it at the door and carry it in, purposeful and helpful, because that was Rose: purposeful, helpful, present. That gave way to something else. Now the mail surfaces on a shelf in her room, under a magazine, in a place that has its own logic we don’t fully understand but have learned to search. The car registration with a deadline stamped on it surfaced six weeks after it arrived. We are recalibrating around this too.
The tissues and tea bags have their own pattern - no longer finding the trash can, because the trash can has stopped registering as the trash can. The glasses are new this week - her reading glasses, my wife’s mother’s reading glasses - found in the microwave, nested on the turntable as if placed there deliberately. Which in Rose’s internal geography they were.
We are still adjusting. All of it. The black hole is expanding, and we are learning its new radius in real time.
This is not confusion. This is anchoring. Her nervous system reaching for solid things in a world that no longer holds its shape. She is doing the only thing she still knows how to do completely: gather, hold, keep close.
What she cannot keep is where she is.
“When are you taking me home?”
She asks this on the days the disease has the upper hand - standing in the hallway of the house she has lived in for a decade, looking at my wife with an expression that is both fully present and somewhere else entirely. She wants to go home. My wife has learned, across years of practice, that arguing with the geography of dementia is a door that goes nowhere. You don’t correct. You deflect - gently, humanely, toward the immediate and the concrete.
“You’re having dinner with us tonight. Come sit down.”
One day at a time. Sometimes one hour at a time. There are days when she asks constantly - the question cycling back every twenty minutes, every ten, her internal compass spinning without settling. There are other days when the question doesn’t come at all, when she moves through the house with something close to ease, and you let yourself think the progression has paused. It hasn’t. But you take the reprieve.
The home she wants is not a place. It is a time. It is the kitchen where she knew where the trash can was, where the glasses lived on the nightstand, where the mail went on the table by the door. It is the world before the world stopped making sense. My wife cannot take her there. She can only be here, in this one, with her - dinner tonight, then tomorrow, then the day after.
“Come sit down, Rose. We’re eating soon.”
Some days that holds. Some days she goes back to her room and my wife finds her coat on the bed - folded, ready for a trip that isn’t happening. She unfolds it. Hangs it back in the closet. Goes to check the microwave.
I am not there for this. I am downtown.
On weekends and when the opportunity comes, the relay shifts. My wife needs a nap. My wife needs an afternoon that isn't organized around someone else's needs. So I take Rose - shopping, an outing, somewhere that gives my wife the house and the quiet and the reprieve she has earned. This is also caregiving. Not the primary weight, which my wife carries, but the relief valve that makes carrying it sustainable. The law does not see this either. It does not see the relay. It does not see the person who steps in so the person who is always there can briefly not be.
My wife does not talk about it at work. This is not a personal failure of nerve. It is a rational calculation - the one that every employed caregiver makes inside the silence of a system that has no name for what they are carrying. The moment you say I am a caregiver - the moment you explain why you arrived late, why you need flexibility, why the Tuesday appointment cannot be moved - you have given HR and your supervisor a lens through which to evaluate your commitment, your reliability, your trajectory.
That lens is not fair. Whether it is legal depends on a set of conditions most caregivers cannot meet, inside an enforcement infrastructure that is being systematically dismantled.
De jure - what the law technically says - there are narrow protections. Denver and a handful of Colorado localities have local ordinances prohibiting family responsibilities discrimination. Federal law offers some protection when discrimination can be traced to sex stereotyping or disability association. On paper, something exists.
De facto - what actually happens - it is nearly unreachable. And in April 2026, less reachable than it has been in decades.
Start with the proof problem. To assert a federal claim, a caregiver must prove not just that bad things happened to their career, but that the employer’s motive was discriminatory - that sex or disability association was the driving factor. Creative dismissal leaves no such evidence. A restructured role. A shifted project. Performance standards that quietly tighten. A promotion that goes to someone else, no explanation offered. These are the ordinary tools of institutional power, producing no paper trail, generating no claimable discriminatory act. The mechanism by which most caregiving careers end is precisely the mechanism that existing law cannot see.
Then add the enforcement problem. The EEOC - the federal agency responsible for investigating workplace discrimination - is operating at nearly half the staffing it had in 1980, with a proposed further budget cut of $19.6 million for fiscal year 2026. The agency has announced it will no longer process complaints alleging disparate impact - the legal theory under which patterns of discrimination, invisible in any individual case, become visible in aggregate. The infrastructure for seeing discrimination systemically is being removed at the same moment the individual pathway to proving it is already nearly impossible.
Then add the environment. We are operating inside an administration that has made the assertion of workplace rights feel professionally dangerous. The chilling effect documented inside the federal civil service radiates outward. When the message from the top is that accommodation is weakness and workers who cannot perform without flexibility should find other work, the rational calculation shifts. You do not raise your hand. You do not name what you are carrying. You make yourself legible as someone without needs.
And beneath all of it: the power dynamic that makes the calculation unavoidable. My wife’s supervisor has information my wife needs them not to have. The institution has memory. The moment she names what she is carrying, she has handed a lens to people who did not ask for it but will not forget it. No discriminatory intent required. No protected class needs to be violated. The social dynamics of institutional power operate on information regardless of law. And the person with less power in that room knows this, and calibrates accordingly, and says nothing.
This is not weakness. This is a rational response to a documented structural reality.
So my wife does not say it. She absorbs it. She makes the accommodations invisible so the institution doesn’t have to. She finds the glasses in the microwave and gets to work on time anyway and does not explain why some mornings cost more than others. She carries the full weight of our caregiving household in practiced silence, and Colorado’s employment law calls that silence the natural order of things.
The absence of a protected class statute does not sit at the top of this problem. It sits at the bottom - the foundation on which everything else rests. Without it, the narrow federal protections remain narrow. The local ordinances remain local. The enforcement agency remains defunded and redirected. The proof burden remains impossible. And the power dynamic remains exactly what it is: a system that benefits from silence and has arranged itself to produce it.
Here is a bias embedded in how we talk about caregiving that I want to name directly, because it shapes everything that follows.
We call people like my wife “uncredentialed.” No formal healthcare training. No degree, no license, no certification. The word is accurate as far as it goes - but it implies a deficit, an absence, a gap between what she does and what a “real” healthcare professional does. That framing is wrong. What my wife has is not the absence of credentials. It is years of experiential competency, specific to two people simultaneously, built through sustained attention and practice and love, that no nursing school teaches and no credential confers.
She is the primary caregiver for my mother Rose - learning Rose’s geography, tracking Rose’s new progressions, mapping the new radius of the black hole as it expands week by week. And she is part of the caregiving relay for my mother, who has lived with us since 2016, whose dementia runs on its own separate timeline, its own separate thresholds, its own separate cartography. Two people. Two progressive conditions. Two maps being learned and relearned simultaneously, each changing on its own schedule, neither pausing for the other.
She knows which behavior in Rose is new this week and which has been true for years. She knows the difference between a plateau and a progression - in both of them. She knows what the question “when are you taking me home?” means on a Tuesday versus what it means at 3 AM, and she knows it means something slightly different depending on who is asking. That is not untrained labor. That is expertise - multiplied, simultaneous, never finished. The CARE Act is built on that recognition.
I also want to name a second bias: the word “family.”
When we say “family caregiver,” we mean something specific in the policy world - a relative providing unpaid care. But caregiving is not only a family function. There are neighbors who take in the person next door when there is no one else. Friends who become the primary support for someone who has outlived their relatives or been abandoned by them. People who do this work not because of blood or law but because it is the human thing to do. The right thing to do. The Colorado CARE Act is built around the recognition that caregiving relationships - and the workplace consequences of those relationships - are not determined by biology. They are determined by presence and commitment and the fact that someone has to do this, and that person showed up.
This is what invisible labor looks like from inside the household. I advocate for caregivers from a downtown office. My wife is the caregiver - without credentials, without a title, without a line in any dataset. The people we are fighting to protect include her, and also the neighbor who took in the woman down the street, and the friend who rearranged her entire professional life for someone who needed her. The ones who stayed. The ones who cannot say why.
This Sunday morning, somewhere in our house, the glasses are in the microwave. My wife already knows. She has already taken them out, set them on the counter, made the coffee. Rose is already awake - asking, or about to ask, the question that means she is frightened and reaching for something solid in a world that will not hold still for her.
“When are you taking me home?”
And my wife is there. She doesn’t argue. She doesn’t correct. She deflects toward the immediate, the warm, the concrete.
“You’re having dinner with us tonight, Rose. Come sit down.”
One day at a time. That is what she does. She is there when I cannot be. She is there when the policy doesn’t account for her. She is there when the system has no name for what she is, when the law provides no protection for how she lives, when the database has no field for the kind of expertise she has built across years of learning two people’s new geographies simultaneously - and then relearning them when the geographies change, which they do, on their own schedules, neither pausing for the other.
She knows where Rose’s glasses go now. She is still learning where my jackets went. She knows which shelf in Rose’s room to check first, and she knows which mornings my mother will need something different and which mornings she will be fine. She knows the answer to the question that costs something every time but is the right answer anyway - and she knows it in two registers, for two people, each asking it from a different place in their own progression. This is not untrained labor. This is not a burden she tolerates. This is irreplaceable competency built across years of loving attention to two specific people - knowledge that no army can seize, no market can price, no policy memo can replace. Knowledge that advances and updates and deepens, tracking two moving targets, never finished, never simple.
The Colorado CARE Act does not give her back the mornings. It does not undo the silence. It does not find the car registration or answer the question or return what the disease has taken - from either of them.
What it does is simpler and more durable than any of that.
It puts her in the statute. It puts the neighbor in the statute. It puts the friend in the statute. It puts every person doing this work - credentialed or not, related or not, visible or not - into the legal architecture of the state of Colorado. It says the work is real. The expertise is real. You cannot be passed over, managed out, or quietly erased for being responsible for someone else’s survival.
Statute. Zero general fund cost. $9 to $18 million in annual Medicaid savings. Effective date: July 1, 2028.
The architecture that holds the record when everything else is failing.
One more thing.
CASI is building the instrument that will make caregivers like my wife visible in the data for the first time - not just what they do and how many hours, but how careers end, whether they knew they had legal recourse, and how they understand their own expertise. It is the first caregiving survey designed to measure creative dismissal, the legal awareness gap, and the full scope of who is actually doing this work — regardless of credential, relationship, or whether they call themselves a caregiver at all. It has never been measured. We are going to measure it. If you want to know when it launches — or if you are a researcher, academic partner, or organizational ally interested in co-development — reach me at mark_fukae@casiadvocacy.org.
Sign the Colorado CARE Act petition: https://chng.it/DLWncS9wtT
Current: 755 signatures, 675 supporters. The goal is 1,000 before the 2027 session. Every name is evidence.
Share your story: mark_fukae@casiadvocacy.org
Subscribe to The Revenue Neutral Caregiver - published every Saturday.
Mark Fukae is the Director of Advocacy for Professionals Who Care and the founder of CASI - the Caregiver Advocacy Support Initiative. He is a registered Colorado volunteer lobbyist developing the Colorado CARE Act for the 2027 legislative session. He has been a family caregiver since 2016.
Contact: mark_fukae@casiadvocacy.org | casiadvocacy.org
Sign the petition: chng.it/DLWncS9wtT
“Our Lives On Hold” documents how systemic failures land on the caregiving household first - in real time, in the kitchen, before the coffee finishes brewing. “Under the Microscope” examines what those same failures look like from inside the workplace - the silence, the calculation, the absence of a statute that sees the work. Both series. One household. Same destination.
therevenueneutralcaregiver.substack.com casiadvocacy.org | professionalswhocare.org
