“I want to be free from the county forever,” says IHSS provider, desperate to get off public assistance.

SEIU Local 2015
Conversations on Long Term Care
8 min readOct 5, 2021

Tracy Mills Jones has provided in-home care for more than twenty years. When her mom’s Alzheimer’s disease worsened, Tracy started caring for her. Soon after she’d been diagnosed in the late 1990s, her mom declined quickly and required round-the-clock care.

Tracy’s mother with her grandchildren

“She went down fast,” says Tracy. “She went from running around with the grandkids and watching movies to forgetting how to walk a year later. She died two years later.”

Back then, the IHSS program (in-home supportive services) paid $3.80 an hour, and the maximum was only five or six hours a day. But Tracy watched her mom 24 hours a day. She and her kids would sleep out front in her mom’s living room. Tracy had to quit her job at Merle Norman, which at that time was paying several dollars over minimum wage.

“I figure I was really earning less than $1.50 an hour.”

“My cosmetics job was a good one,” says Tracy. “And I went from that to earning pennies when you consider all the hours I was working. My mom needed everything. I bathed, dressed, fed and changed her. I kept her company and tried to keep her happy. I figure I was really earning less than $1.50 an hour.”

About the same time Tracy started caring for her mom, her husband’s illnesses worsened. He was a Vietnam veteran who’d been badly exposed to Agent Orange during his service. For years he didn’t feel well and had several injuries and illnesses that meant he was in and out of work. Around the time of her mom’s diagnosis, her husband was diagnosed with his first of many cancers.

“Over about two decades, he had just about every cancer you can get. He had three forms of prostate cancer, bladder and liver cancer, lymphoma, lung cancer, brain cancer,” says Tracy. “The first time it was a lump on his leg. But he hadn’t felt well for a long time before that, so who knows how long he had cancer. At the end, they wanted to take his whole leg up to his hip. It was too late then for chemo. I turned our bedroom into a hospital room. He died within just a few months on Valentine’s Day 2018. We’d been together for 37 years.”

The V.A. never provided full benefits until after he died. It was never more than about a third of what he should have been getting, according to Tracy. The family lost their home in East L.A. For a time they were homeless, the children staying with Tracy’s mom and sister-in-law.

Back to full-time caregiving. Back to financial struggles.

A few years later after her mom died, Tracy was pulled into caregiving again. She got a call from her brother’s workplace saying he never showed up. Tracy, with a key to her brother’s place in her hand, rushed to his apartment. The chain was latched, but she could see through the cracked door that he was motionless on the floor.

“I thought he was dead,” says Tracy. “But the Fire Department came, cut the chain and got him to the hospital. We learned he’d had a massive stroke. He was only 36 when it happened. It left him paralyzed — but, with a lot of prayer and keeping him moving, he was eventually able to walk with a walker.”

At first, Tracy moved her brother into her home and nursed him back to strength. He likes his independence, so he’s in his own place now, getting around with his walker — but, he lost a kidney and requires dialysis three times a week. He continues to need multiple surgeries — constant mini setbacks.

“When I know he’s at his dialysis appointments, that’s when I sneak in to clean, do laundry, bring groceries,” says Tracy. “He acts like he doesn’t like it, but then he sees what I’ve left him in Tupperware — his favorites like oxtails or salmon — and then he’s happy.”

One day, her brother fell in the bathtub and was there for hours, unable to get out and call someone. He’d told Tracy he didn’t need her that day. Since then, she shows up early every morning to help her brother shower and get ready for the day. And, she chuckles, he makes it abundantly clear the entire time she’s there that he doesn’t want any help.

That’s often the heartbreaking part about providing care. For those fiercely independent folks, you have to make sure they can still keep their dignity. That’s a huge part of why she does this work helping people stay in their homes.

Tracy with her youngest son and her brother, whom she cares for

Tracy also cares for a family friend, a single dad who’s legally blind and lives in L.A.’s Crenshaw neighborhood and wants to stay in his home to continue raising his 13-year-old son. That means Tracy drives back and forth from her home in Palmdale to L.A. nearly every day — a 130-mile round trip commute. That eats up a lot of her IHSS wages, but he was robbed once and has a hard time trusting anyone but Tracy.

Why she does it.

“When I see someone in need, I help. I always have,” says Tracy. “My mom was helpful like that, too. I guess that’s where I got it from. I guess you call it empathy?”

It’s important to Tracy to help her consumers stay in their homes. She says no one could care for them like she does. It breaks her heart that there are so many people out there who can’t find someone to help them stay in their home — someone they can trust with their lives and their homes.

Fighting for a place in the middle class.

“It wasn’t until Los Angeles started raising the minimum wage [in 2016] that I was able to get off public assistance. Even though I work hard, being on any kind of welfare makes me feel like I’m somehow not a productive member of society. I want to be free from the county forever.”

Tracy is determined to make it financially. She desperately wants to be able to afford healthcare for her youngest child still at home. She wants to get him off Medi-Cal. When her wages finally went up to $12 an hour a few years ago, she decided to give up her Section 8 apartment (with the abusive landlord) and buy her own home. She got a bargain in the high desert. In addition to her two small IHSS paychecks, she also picked up some house cleaning jobs to make sure she could pay her mortgage.

Caregivers historically have been undervalued and underpaid. Many note that this is a holdover from centuries of Black, brown and immigrant women working in our homes for poverty (or no) wages. These women were intentionally left out of the New Deal and labor laws of the last century. They typically lack all the things we associate with a good job — decent wages; comprehensive, affordable healthcare coverage that extends to family members; a secure retirement.

But with caregiving now such an essential part of our economy — it’s one of the fastest growing jobs in nation — we can’t keep paying poverty wages. We can’t continue to leave these women out. We must bring these workers into the middle class. It’s beyond time.

COVID.

When COVID hit, Tracy continued caring for her IHSS consumers but was no longer able to go into other homes for those side jobs that helped her pay the bills. She couldn’t risk bringing infection into the homes of the two men she provided care for.

“I got behind on my mortgage,” says Tracy. “I caught up through February of 2021 with some unemployment checks, but unemployment wasn’t coming in right. One week you’d get it then they’d cut it. And when those checks did come, it was ‘are you going to pay the light bill? …the trash? …the mortgage?’ During COVID it was crazy.”

One bill that didn’t end up getting paid was the trash pick-up. They didn’t have any kind of financial hardship program. They simply drove by her home on trash day.

“Even the mayor couldn’t help me,” says Tracy. “At one point, we had a couple of months’ worth of trash, including two grandbabies in pampers. We had giant crows poking holes in the bags. I was calling every day. They said we won’t pick up until you pay your bill. I lost my friendship with my neighbor over that pile of trash.”

Ever resourceful, Tracy had an idea.

“We still had my husband’s old flatbed truck. So we parked it in front and filled it with as much trash as we could. That was the only thing we could think of — hoping the city would tow it away. They finally did. We clapped.”

Tracy tried unsuccessfully to refinance her house. She’s currently trying to get into her lender’s forbearance program to hang on to her house.

She still might lose her home.

“You have to study real hard.”

“I told my kids if you don’t want to clean houses like mommy, then stay in school. You have to study real hard,” says Tracy. “One of them got straight As and got her master’s. She’s a teacher.”

Tracy and her family

All of Tracy’s older kids graduated from high school. In addition to her daughter with the master’s degree, two others also have college degrees. But like so many of this generation, college degree doesn’t always translate into a good job. The number of college-educated baristas, Uber drivers and warehouse workers grows. One daughter, a Cornell grad, helps Tracy care for Tracy’s youngest and hopes to get her real estate license.

Time for $20.

“You can’t put a price on the kind of love and care we provide. But it’s simple: if I could at least get to $20, I’d be able to pay for everything. I’d be able to get completely off of public assistance, keep my home and be a part of the middle class.”

Tracy and other long-term care providers, both in nursing homes and private homes across the state, have started their “Time for $20” campaign to establish a living wage floor in the industry. Learn more at https://www.seiu2015.org/timefor20/.

--

--

SEIU Local 2015
Conversations on Long Term Care

The largest long term care workers union in the U.S. We represent over 370K home care & nursing home workers in CA. www.seiu2015.org