Let’s start with a big old reality check: caregiving sounds noble, but for millions who slog through the daily grind of Medicaid Home and Community-Based Services (HCBS) caregiving, it’s less about "fulfilling work" and more about "who's going to help me get this person in and out of the bathtub today?" The good folks at KFF (aka the Kaiser Family Foundation) decided to dive into the lives of caregivers by hosting some focus groups. Their report, dryly named Experiences of Direct Care Workers and Family Caregivers of Home- and Community-Based Services (HCBS), reveals a world where love meets exhaustion, low pay, and sometimes even racism.
1. The Illusion of “Helping People” – Really?
First, every caregiver says they’re doing it because they love helping people. Sure, that’s lovely and all, but most people don’t jump into the deep end of direct care because they want to feel all warm and fuzzy inside. Many caregivers were already helping their own family members and thought, "Might as well get paid peanuts for it, right?" They weren’t exactly lining up for an all-inclusive pass to back-breaking, soul-crushing work.
A lot of paid caregivers started as unpaid family caregivers, and you know what that means: they already know how intense it is to be “the one” in the family that everyone calls when grandma needs a shower or grandpa needs his meds. These caregivers did their time for free, so why not add a paycheck to the mix?
“If Not Me, Who?”: The Guilt Trip Special
One man in Florida put it perfectly when he explained why he lifts his 105-pound relative in and out of the shower daily: "If not me, who?" It’s a loaded question and reveals one painful truth of caregiving: many caregivers would prefer NOT to be doing this at all, but they’re roped in by a lack of options.
2. The Physical and Emotional Marathon That is Direct Care Work
Caregiving is like a free gym membership—with a catch. It's all heavy lifting, without the glory. Almost all caregivers report chronic physical problems, from back pain to plain old exhaustion. Many older caregivers can barely keep up physically, with one participant candidly stating that handling a 250-pound patient is no easy feat for a 58-year-old with fibromyalgia.
The Mental Load? “Emotionally Draining” Doesn’t Even Begin to Cover It
Even if they’re not throwing out their backs, caregivers are mentally tapped out. They’re not just dealing with routine tasks; they’re caring for people who might be declining. Take, for example, the younger caregiver in Virginia. She spends her day listening to her patient scream for hours. For her, every day is the mental equivalent of scaling Everest with a piano strapped to her back.
3. Caregiving as a Career Path: A Dead End Full of Doors
So, for a lot of caregivers, what does the career trajectory look like? Well, let’s just say it’s not the type of thing LinkedIn would tout. Some caregivers see this as a “steppingstone,” hoping they’ll bounce up to something less intense (and better paying). Others are stuck. No paid vacation, no health benefits, no retirement plan—the trifecta of “just keep grinding until you can’t.”
One direct care worker in Missouri discovered that her agency only paid her state minimum wage if she clocked in “by the telephone.” Forget to call in? Boom, they dock you $2 an hour. Apparently, every hour counts… until they’re paying for it.
4. When Families Meddle and Racism Shows Up Uninvited
Then there’s the lovely experience of family members who don’t understand what caregivers go through. Caregivers report meddling, demanding family members who show up every six months to criticize. “Why isn’t Mom’s hair done? And why hasn’t she been bathed more often?” The caregivers don’t say it out loud, but they’re thinking it: “If you care so much, how about you come and do it?”
And yes, racism is alive and well. Several Black caregivers reported patients refusing their care because of their skin color. "I don’t want you to take care of me,” they’re told. Yet, somehow, these caregivers persist, even though a slap to the face might feel more welcome than such dismissals.
5. Home Care Meets Financial Woes: Where Peanuts Are Considered Payment
Nearly every caregiver will tell you the same thing: they’re not paid enough. HCBS services are vastly underfunded, leaving caregivers underpaid and overworked. Forget about health insurance or vacation time—many caregivers rely on Medicaid themselves. Imagine that: being so underpaid that you qualify for the very system you work in.
What’s worse? Even when Medicaid payments are available for family caregivers, they’re a joke. Family caregivers receiving Medicaid payments make less than minimum wage. And here’s the kicker: most family caregivers don’t even know they might be eligible for compensation!
6. Emotional Support and Respite Care? Good Luck With That
Here’s a shocker: there’s virtually no support network for family caregivers. A lot of them end up putting their own health on the backburner, skipping doctor appointments, ignoring checkups, and forgoing every bit of self-care. One woman delayed a mammogram so long that she had to undergo surgery—this is where things are at. Imagine an environment so intense that you end up compromising your own health just to keep your caregiving duties afloat.
Then there’s the issue of “respite care,” which is a fun little term for “please let me take a damn break.” Most family caregivers would love this, but it’s like asking for a unicorn—they rarely see it, if ever.
7. What Caregivers Really Want: More Pay, Benefits, and a Little Respect
Here’s a crazy idea: how about we actually start valuing caregiving? Participants universally agreed that they need more money to even begin making this career bearable. HCBS workers would love policies that prioritize actual funding for caregivers, rather than vague promises of “strengthening Medicaid.”
One direct care worker in New York said it best: "People pay more to take care of their animals than they do for our elderly." It’s hard to argue with that logic when agencies value “executive management” more than the people doing the dirty work.
8. The Messy Paperwork and the Tangled Web of Medicaid
Let’s talk about how hard it is to keep up with the Byzantine process of Medicaid paperwork. Family caregivers spend what feels like half their lives filing and refiling, faxing and refaxing. Getting hours of care approved, re-approved, and sometimes re-approved again is exhausting. As one caregiver summed up, "You’re aggravating your doctor’s office, because they’ve already faxed it and they have to fax it again."
Isn’t this supposed to be a system designed to help people?
9. Want to Help? Try Paying for Actual Support, Not Just Hollow Promises
KFF’s focus groups make it abundantly clear that caregivers don’t want more platitudes—they want action. Increased Medicaid funding, fair wages, mental health support, and family training could go a long way in addressing the exhaustion, burnout, and financial strains these workers face daily. Let’s stop pretending these are “essential workers” while treating them as entirely replaceable.
So, what should be the takeaway here? It’s not that caregivers are saints or heroes; they’re people—tired, overworked people who deserve better than the system is giving them. Let’s face it, America: until we decide to back up our empty words with some serious reform, caregiving will continue to be one of the most underappreciated, underpaid, and under-supported jobs around.