As one of the over 550,000 caregivers in the state’s In-Home Supportive Services (IHSS) programs, I am part of a big system that keeps 650,000 disabled, blind, or elderly Californians in their own homes, and out of nursing or board-and-care facilities.

But when I go to work around my hometown of Fresno in the houses, trailers, and apartments of these Californians, I often feel alone.

Sometimes, I think this is the worst job I’ve ever had.

That’s saying something because I’ve been working since age 13, almost always taking care of others. Most of my experience involves working in and directing child care facilities and after-school programs. I’ve also worked in group homes for foster kids and in teen suicide prevention programs.

Back in 2006, I was working 80 hours a week in two jobs, and taking home about $60,000 a year. But then the Great Recession came, ending both jobs. I was on unemployment for a while.

Then, my mother got Alzheimer’s.

That was my introduction to IHSS. Many of the caregivers who work through the program are taking care of relatives. My mother applied to receive care from IHSS, and I became one of them.

Here is how the program is supposed to work. A person having difficulty living independently submits an application, then receives a visit from a social worker, who determines what services they need (among them: bathing, bowel and bladder care, grooming, dressing, housework, meal prep, and trips to the grocery store). The social worker also determines how many hours of service they are entitled to receive—the max is 283 hours a month (a little more than 40 hours per week). Once a person is approved to receive caregiving, that person becomes the client, and thus the boss of the caregiver.

And that relationship is often difficult and complicated.

For starters, caregiving for IHSS is a minimum wage job. When I started back in 2011, I received just $8 per hour. That went up to $9 per hour in 2014 and $10 in 2016; today we caregivers earn $15.50 per hour. The social worker gave my mother five-and-a-half hours of caregiving a day.

In reality, I was working 24/7.

It was heart-breaking work. By the time I started getting paid to take care of her, she didn’t know who I was. As the disease progressed, she grew harder to manage—showers were very difficult. She’d pick up things off the floor and eat them. She’d try to run away. Fortunately, the neighbors would stop her if she got out the door.

After she went into a nursing home, in 2018, I took on new clients, whose friends or family knew me, and requested that I take care of their loved ones.

Each situation is challenging in a different way.

Getting paid for the hours you work is nearly impossible, especially when the person has Alzheimer’s or dementia and can’t fill out the time card herself. I once worked 79 hours over two weeks for one client, but relatives, who had her in a conservatorship, signed the card so that I only got paid for 40 hours. In that case, I was supposed to help with cleaning, but the client had no soap or detergent. I had to pay for supplies myself. She also wasn’t sleeping in a bed because she couldn’t assemble it. I had my husband come over and set it up, so she would sleep better.

I brush people’s teeth and spend hours getting them to take their pills. Another approved duty is taking clients to doctor’s appointments. That can take a lot of time—many of my clients are on the south side of Fresno, but the doctors are usually in the north, which means long, slow bus rides with people who need constant monitoring.

Clients also ask for help with tasks that the IHSS social worker hasn’t approved—and it’s hard to say no. I would be on my feet four hours a day with one client who was constantly having me take her to the mall to go shopping, spending away her savings.

The other tricky dynamic is that not all clients live alone. I worked for one elderly man who had a disabled son, and I ended up helping them both.

In many cases, clients are living with friends and family who insist that I do extra work for them, too. I often am treated like the maid. In one situation, my client was living with a relative who was out in the streets constantly and around people. This was during COVID—we were essential workers, and so we had to keep working despite the risks. But, eventually, I insisted that I would clean only one bathroom—the one used by the client—in their trailer and not the second bathroom used by the client’s relative.

Sometimes, I feel vulnerable. I had one client who was a heroin addict and living with a relative who was also an addict. I had another client who was schizophrenic; on errands, I had to fend off men who would try to get her contact information, with the clear purpose of robbing her or otherwise taking advantage.

If I run into these kinds of trouble, there’s not really anyone I can call for help. My only option is to leave that assignment; that means giving up my paycheck until I find a new client, which can take some time. IHSS has tried to solve this problem by having social workers come back for follow-up visits once a year. But once a year isn’t enough supervision to work.

To try to solve some of the problems, I’ve been working as an organizer with my SEIU local, the union that represents IHSS workers. I sign up members and advocate for caregivers to get more hours, to be paid properly, and to be treated better. We also have a number of caregivers who aren’t getting sick leave. And many caregivers don’t have health insurance; I’m fortunate to be on the insurance of my husband, a retired sheet metal worker.

I’d love to retire, but we need the cash, even though it’s just $700 every two weeks. I also do some online sales to boost the family income, and pay my son’s phone bill.

The best hope for caregivers right now is state legislation to raise the minimum wage for all health workers to $25 per hour. With that pay, we caregivers would have more time with our families, and afford to pay bills on time—plus go to the grocery store more, and to the food bank less.

Of course, $25 per hour can’t solve everything. But it would make this job, one of the toughest and worst-paying you will find, a little bit better.