Elders and caregivers in California deserve better than funding hurdles and shuttered programs

When my dad was young, he took off his own braces with pliers in the garage after his parents ran out of money to take him to the orthodontist. He answered the door for debt collectors, faking as if his parents weren’t home to avoid confrontations. 

He knew economic precarity in his tiny bones. 

It’s no wonder, really, he became a bankruptcy lawyer when he grew up. More on the nose than any novelist could write it, my dad’s “hero’s journey” was largely determined by his craving to create the safety he never had as a child. 

My dad doesn’t remember any of this, mind you. He is about a decade into his dementia journey, and almost all of his memories — short- and long-term — have burned to ash in the relentless fire of the disease. These days it is me, his adult daughter, and my brother and mom who are the keepers of the plot twists, characters and narrative tensions that animate his life story.

Because my dad was on a quest to never be poor again, we are in a minority of family caregivers who have access to the money we need to care for him. 

For a while that meant taking him to a day program for adults with dementia and Alzheimer’s. It was an oasis in an otherwise overwhelming life of family caregiving. My mom, brother or I would drop him off and enjoy a solid day of uninterrupted work, household administration or even just a much-needed nap.  

But last December the center closed down because of the inexplicably high fees that the state charges such programs annually and the unconscionably low Medicaid reimbursement rates it pays. The state gave the organization $76.27 a day for care that costs $250 to provide — a reimbursement rate that hasn’t changed since 2009. 

The closure sent us and about 40 other families into a tailspin. There are so few affordable day program options for families across California. In fact, in 32 counties Medi-Cal recipients have no access to programs like these, according to the California Association of Adult Day Services.

Instead we have been relying on an in-home health aid about 20 hours a week and are touring memory care facilities, some of which cost as much as $15,000 a month out of pocket. The wait lists are long. Figuring it all out is exhausting, on top of the daily work of caring for my dad — cooking him every meal, bathing him, making sure he takes his ever-changing combination of medications at the right times, weathering his agitation. 

And we have the absolute best possible scenario: three committed family caregivers and one professional, as well as research acuity and the financial resources to make sure we can honor my dad in these last months of his life.  

The proposals that have surfaced during the first few weeks of the Trump administration threaten to make this already bad situation even worse for families whose financial picture doesn’t look like ours — the majority of American families caring for an elder with dementia who are totally dependent on Medicaid. 

One likely proposal will be Medicaid work requirements, which may sound innocent enough, but as Justice in Aging explains: “Though most people targeted by work requirements should remain eligible, the red tape alone will take away coverage from people who are already working, older adults who are retired or have difficulty finding work, people with disabilities, and family caregivers. Moreover, resources spent on implementing these bureaucratic hurdles will delay access to critical health, financial, and food support for everyone.”

Our elders, and their caregivers, deserve a better story. My dad’s ability to build wealth was born out of his childhood trauma and accelerated by his white, male privilege. None of that should be a prerequisite for a dignified ending in this extremely rich country.