I Got Excited. And Then I Kept Reading.

| Read Time: 6 min

After my dad passed I started learning things I didn't know when I was in it.

That's how it goes sometimes. You're so deep inside the role — managing the appointments, the medications, the wound care, the emotions, the logistics, the grief that starts before the loss — that you don't have capacity to look up. You just keep moving because stopping isn't an option.

And then one day the caregiving ends. And you come up for air. And you start finding things.

I found out there was a whole movement. An entire infrastructure of advocacy and research and policy work built around family caregivers. Organizations. Coalitions. A national strategy. I found out that in 2018 Congress passed something called the RAISE Family Caregivers Act — Recognize, Assist, Include, Support, and Engage. I found out the federal government had convened advisory councils, released reports, developed a national strategy.

Y'all. I got excited.

And then I kept reading.

What the RAISE Act actually is

The RAISE Family Caregivers Act became law in January 2018. It directed the Department of Health and Human Services to develop the country's first National Family Caregiving Strategy — a plan to recognize and support the millions of Americans providing unpaid care to someone they love.

That strategy was released in 2022. Four years after the law passed.

Advisory councils are still meeting. Reports are still being written and submitted to Congress. As of 2026 the council convened again in January. More meetings scheduled for April. Federal agencies committed to nearly 350 actions in support of the strategy. Progress is being tracked. Data tables are being published.

And somewhere in all of that — in the meetings and the reports and the committed actions and the data tables — I kept looking for the part where something actually changed for the caregiver standing in the hospital room. The one who just got handed a wound care tutorial and sent home. The one who hadn't eaten all day. The one who was told don't forget to take care of yourself with absolutely nothing behind that sentence.

I couldn't find it.

What I found instead was recognition. Acknowledgment that caregivers exist and that the work is hard and that something should probably be done about it.

Which is not nothing. But it's also not help.

The math they already know

Here's what makes it harder to sit with.

The system already has the numbers. This isn't a hidden problem or an emerging issue. Family caregivers contribute between $470 and $600 billion in unpaid healthcare services every year. Caregivers over 50 who leave the workforce to care for a parent lose on average nearly $304,000 in wages and benefits over their lifetime. More than 53 million Americans are doing this work right now — most of them without training, without backup, without a plan, and without anyone asking if they were okay with the arrangement before the arrangement started.

The system knows this. It has known this. The data has been there.

I emptied a retirement plan keeping my father and myself afloat. I made the choice between letting him go on Medicaid — losing his Social Security, losing his dignity, and still not having enough — or stepping in and filling the gap myself. I rebuilt my entire career around his needs. I am a solopreneur today without health insurance of my own because of choices I made out of love.

And the system looked at all of that and called it a family matter.

Here's what I've had to come to terms with. The reason robust caregiver support hasn't been built isn't because nobody noticed. It's because we are the answer to their problem. Family caregivers are the load-bearing wall of an infrastructure that would collapse without us. And nobody is rushing to disrupt the one option that doesn't cost them anything.

Who's gonna mess up the one option that doesn't cost them.

That's not cynicism. That's structure. And understanding the structure is the first step to changing it.

What actually needs to change

I'm going to say this plainly because vague advocacy doesn't move anything.

The caregiver needs to be provided for. Not evaluated. Not managed. Not handed a pamphlet on the way out the door. Provided for — the same way we decided as a country that when a child enters the school system, the whole family gets resources. Because we figured out that a supported family produces a child more likely to make it to graduation. The logic is identical here. A provided-for caregiver produces better outcomes for the person they're caring for. The research supports this. The system just hasn't caught up to its own data yet.

What provided for actually looks like — and I want to be specific because specificity is what moves policy:

Respite care that is real and accessible. Not theoretical. Not buried in a county program nobody told you about. Actual relief, actual coverage, actual time for the caregiver to be a person for a few hours without the whole arrangement falling apart. The latest reports estimate the annual out of pocket financial impact to family caregivers at $5,000 to $7,000. And that's conservative. That doesn't count the $5,600 ramp. The $15,000 shower conversion. The medical equipment, the home modifications, the supplies that insurance covers partially or not at all.

Tax relief that reflects reality. If you would pay someone else to do what a family caregiver does — the wound care, the transportation, the medication management, the personal care, the 24 hour availability — then the person doing it out of love deserves some recognition of that value. Not charity. Correction. A tax break for the extra dollars a day it costs to care for a sick loved one is not extravagant. It is a baseline acknowledgment that this is real work with real costs.

Mileage reimbursement. Supplemental income support for caregivers who stepped out of the workforce or reduced their hours. Retirement protection for the years spent caregiving instead of earning. These are not radical asks. They are rational responses to a documented, quantified, undeniable reality.

And real intentional information provided at the point of care. Not a newsletter nobody has time to read. Not a list of resources handed over during discharge while you're trying to get your loved one into a wheelchair. Actual information. Actual access. Actual follow-up.

Because if they don't tell you respite care exists they don't have to fund the demand for it. And that calculation — the one where silence is cheaper than support — is exactly what has to change.

Resources without access ain't a resource.

Your voice matters — even from your couch

Here's what I know about caregivers and advocacy: we can't show up the way the system expects advocates to show up. We can't make it to the rally. We can't fly to Washington. We can't sit in a three-hour public meeting when someone at home needs us.

So our voices get missed. Not because we don't have something to say. Because the table wasn't built where we are.

That's something the CGC is working to change. Our virtual roundtables exist specifically for caregivers who are in it right now — who have something to say about what's missing, what's needed, what would have made a difference — and who need a table that comes to them instead of asking them to come to it.

The RAISE Act is still moving slowly. The strategy is still being updated. The councils are still meeting. And while all of that continues — caregivers need somewhere to put their voice today. Not in 2027. Now.

That's what the roundtables are for. Stay tuned for info coming soon. and yes i dont mean next year.

✦ Before you go: If you want your voice in the conversation about what caregivers actually need — join us at the next CGC Virtual Roundtable. You don't have to leave the house. You don't have to have it all figured out. You just have to show up and tell the truth about what you've lived.

And if you're still in the middle of caregiving and need a practical starting point right now — the Caregiver Pocket Guide is where to begin.

→ Pocket Guide: guide.familyofstandards.com/pocket-guide → Virtual Roundtable: [roundtable link]

— Suzanne Horton, LPC Founder, The CareGivers Grief Commission