When the Cards Become the Memory - And Why Caregivers Can't Afford to Wait

Our Lives On Hold: The moment memory meets policy - and the workplace says “suck it up."

By Mark Fukae - Director of Advocacy - Professionals Who Care

My mother and I share a birthday.

This year, for her 94th, we took her to a small German restaurant - a place that felt like home. She was born in Germany, and even now, as her memory fades, the taste of sauerbraten and German folk music still spark something familiar. She smiled through the whole meal.

But what she held onto most were the birthday cards.

All week, those cards have stayed on the kitchen table. She picks them up throughout the day, reads them, and when the words blur, she hands them to me and asks me to read them aloud. Her memory lasts only seconds now, so each reading is new. Each time, she rediscovers that she's loved. That she matters. That someone took the time to write her name.

And as I watched her trace those words again, I felt the weight of something larger:

Our lives are on hold, not because of her decline, but because the systems around us make caregiving harder than it needs to be.

This Week's Blows to Caregiving Families

While my mother reread her birthday cards, the country delivered blow after blow:

The Trump administration froze $10 billion in child care, TANF, and social service funds to five states, including Colorado. On Friday, a federal judge blocked the freeze for 14 days - a lifeline, but a fragile one.

ACA subsidies expired, sending premiums skyrocketing for caregivers who often work part-time or gig jobs. The House passed a three-year extension. The Senate wants two years. Nothing is certain. Families are in limbo.

Medicaid work requirements rolled out nationally. Caregivers are technically exempt — but only if they can prove it. The administrative burden is enormous.

And employers continue practicing constructive discharge - quietly pushing out caregivers and disabled workers without ever having to fire them.

The Unspoken Workplace Truth

Even in workplaces with supportive managers, caregivers cannot openly talk about their responsibilities. Not without fear. Not without calculation.

Because caregiving is still treated as a liability. A distraction. A weakness. A sign you're not fully committed.

So people hide. The dementia diagnosis. The medical appointments. The exhaustion. The emergencies.

They hide because they know - even if no one says it - that disclosure carries risk.

And when downsizing comes, caregivers become the easiest targets. Not because they're poor performers, but because vulnerability becomes a quiet bullseye.

My Story - And the Genesis of My Advocacy

I lived this personally.

In 2022 and 2023, I had formal workplace accommodations that allowed me to care for my mother while performing my job. They worked. They kept me stable, my mother safe, and me employed.

But in 2024, everything shifted. The global return-to-office wave hit. Despite two years of successful accommodations, I was told: come back or leave.

What impacted me most was what HR said when I tried to explain:

"Sorry, we ALL are dealing with our family caregiving responsibilities - but we have to suck it up."

That sentence was the moment everything snapped into focus. That was the genesis of my advocacy. That was the moment I realized: the law itself has to change.

The Colorado CARE Act

This is why we need the Colorado CARE Act.

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

This isn't just a caregiver bill. It's an ADA modernization bill. A workplace justice bill. A dignity bill.

Your Story Matters

If you've hidden your caregiving at work, felt pushed out quietly, or watched systems fail someone you love - your story matters.

Read, view (new video!) and listen (embedded Podcast) to the full reflection on The Revenue Neutral Caregiver: [https://open.substack.com/pub/therevenueneutralcaregiver/p/our-lives-on-hold-when-the-cards?r=6a52ih&utm_campaign=post&utm_medium=web&showWelcomeOnShare=true]

Sign the CARE Act petition: [https://c.org/DLWncS9wtT]

Share your story with us: https://professionalswhocare.org

Silence is how the system stays the same. Visibility is how it changes.