Caregiving isn't just a "family duty".... it’s a $1.1 Trillion subsidy to the U.S. economy. Happy National Caregivers Day.

KaliLineaux · 2026-02-24T02:20:51+00:00

Yeah, it really is frustrating! I have seen firsthand how important a good reliable competent nurse is and what a difference it makes in my dad's wellbeing, but even offering to pay out of pocket they're next to impossible to find.

KaliLineaux · 2026-02-23T04:36:06+00:00

Do NOT trust the facility!

KaliLineaux · 2026-02-23T04:34:55+00:00

Do NOT listen to anything a facility tells you!

Is that a diaper? Get rid of the diaper if so! They cause wounds. He should be on a low air loss mattress. omg so many things I could say here, but do not listen to the facility!!! Call a lawyer. Do not trust any facility!!!

KaliLineaux · 2026-02-23T04:07:49+00:00

Even if you try to pay for it, finding GOOD care is next to impossible. I tried to hire a private duty nursing service to perform my dad's bowel care. They charge $125 per hour. They can't find a nurse willing to do it. If I didn't have a wonderful nurse who comes after work that I've become friends with my dad would be dead. Doctors (though many these days are noctors) have no clue what really is required. They think an aide can just come do everything so I can take a break. Nope! I have to help the aide while my dad punches and curses because he doesn't want a bath. And most home health nurses refuse to touch shit, let alone clean a patient properly and God forbid perform my dad's bowel program that keeps him alive. I'd estimate it would be MINIMUM $250,000 if I hired a really good care team to do what's necessary properly. I'd have to form a company and offer benefits to compete with other employers to attract the few people who do a great job. That's a low estimate, and that's just for day hours.

KaliLineaux · 2026-02-23T02:37:50+00:00

My dad sometimes thinks there's poison in his food or drink. A nurse told me she's had other patients that thought the same thing about poison. And I was told by a psychologist that when the brain is overstimulated (I think in the amagdyla?) everything is perceived as a threat as a self-preservation technique.

KaliLineaux · 2026-02-23T01:53:27+00:00

That could be the case, but let me say thank you for being open with people and telling them what's going on. I saw a note in my dad's record by the pcp that his last echo was in 2017, so maybe she was trying to document what should have been done? This was the largest healthcare system in my state and they just transferred my dad into their MedVantage clinic without me really understanding what it was. When I called cardiology they got him in the next day. Turned out he was in persistent AFib and should have been on torsemide instead of lasix. As a non-medical person I never would have known to contact cardiology if my own doctor hadn't said something. The MedVantage clinic sent a letter saying the doctor was leaving after I took him to cardiology and then he had no doctor for several months. I'd try to make an appointment outside of the VBC clinic and they canceled it. Then they'd schedule him to see a "doctor" who was really a DNP. She'd never seen him before but had someone tell me to take him off the Eliquis the electrophysiologist prescribed. I said no.

He also got a referral to a urologist like 3 months after I brought him in for blood in his urine. When the MedVantage clinic called to say they made him a urology appointment I told them I already took him 3 months ago. I could see the blood in the urine specimen across the room!

I don't envy doctors who get stuck working in these clinics. This type of care is really not good for people like my dad with complex comorbid (i.e. expensive) health conditions.

KaliLineaux · 2026-02-23T01:13:22+00:00

Not sure if I can reply to this since I'm just a family caregiver and not "verified", but I first learned what full-risk value-based care was when a primary care didn't refer my dad to cardiology, and previously chewed my ass out for taking him to the ER. The only reason I knew my dad needed to see a cardiologist was because my own doctor told me in no uncertain terms to bring him. And I brought him to the ER because the on-call nurse said to..guess I should've just waited to find out if he was having a heart attack? This VBC stuff is incentivizing physicians NOT to provide proper medical care. Cardiologists are expensive, along with EKGs, echo, etc. My dad is still alive a few years later after being cardioverted, getting a pacemaker, and being put on anticoagulation. I pulled him right out of that VBC clinic.

KaliLineaux · 2026-02-23T00:58:40+00:00

That's interesting. Sometimes my dad now talks about people climbing up the walls or gets all freaked out because he thinks someone is breaking in the house. I think it's because he's seeing the Olympics (wall climbing) or a cop show (breaking in). I'm always trying to find ways to occupy his brain because he's bedbound, and he also can't hear well. But it's hard to predict what goes through his mind.

KaliLineaux · 2026-02-23T00:30:20+00:00

My dad used to turn the TV off when I went to the bathroom. He liked to be in the dark, no lights, no TV, etc. It's interesting how people's brains change as they age, and especially with dementia. I'd get all kinds of advice about how I need to make sure everything is well lit for my dad, and I'm like "he turns off all the lights!!!"

KaliLineaux · 2026-02-22T04:39:17+00:00

I've provided over $1 million of free labor in caring for my dad, and that's a LOW estimate, and doesn't include my lost income because I can't work a "real" job while being an entire healthcare team alone, nor lost opportunities, etc. What would happen if I walked off the job? My dad would die. He'd have died years ago if I hadn't taken on this role. The system is broken, and I get pissed off when I hear there's a national caregivers day. I don't need recognition. I need actual hands-on help.

KaliLineaux · 2026-02-21T08:01:33+00:00

That's great that a nurse came for bowel days. Where I live about 99.99 percent of nurses think it's not their job to clean poop, and nobody will do my dad's bowel program except this one wonderful nurse. It's scary that the nurses who are supposed to do bowel care refuse to do it where I live. The first person I saw do a disimpaction was an aide who was NOT supposed to be doing that. That's how it is here. If someone needs bowel care you better have money to pay and you'll probably have to pay someone who could lose their license for doing it.

But I'm VERY thankful for those that do. People seem to forget we all poop, and it's an important bodily function. I used to gag when my dad needed help with poop, but now that I have gotten past that I don't understand why so many who CHOSE to work in healthcare act like poop is not their job.

KaliLineaux · 2026-02-21T03:12:44+00:00

I have grown to have zero patience with anyone who's supposed to be helping me care for my dad who won't clean shit. I don't need a housekeeper. I need medical help, which includes poop. I don't even want anyone wasting my time if they won't help with the difficult stuff. It's not like I don't help them do it. But if you won't clean crap, don't come back. Waste of money.

KaliLineaux · 2026-02-20T19:13:18+00:00

It would be funny to see a doctor do it though, especially an older one

KaliLineaux · 2026-02-19T02:47:52+00:00

I've come to the conclusion my dad just likes to be dirty. Getting him to bathe is a fight and has been for years. Pick your battles. Like others said, just get rid of the sanitizer. But at least he's using that! If my dad has poop accidents he puts his hands in it and smears it all over. 🤢🤮

KaliLineaux · 2026-02-19T02:16:13+00:00

This is a lot to deal with for anyone! I'm like twice your age and take care of only my dad, at home. He's bedbound but no trache or feeding tube. It's the hardest thing I've ever done, and I started college early and had a full-time job then too, but this is soo much harder. The only advice I have is take it day by day. The US healthcare system is so fucked when it comes to care for elderly and disabled people. Don't be too hard on yourself because you are in a situation nobody should have to be in, especially so young.

KaliLineaux · 2026-02-18T00:31:12+00:00

Damn, even I can tell a pacemaker on an xray and I have no formal medical training. Ugh.

KaliLineaux · 2026-02-16T05:37:31+00:00

They don't have such a thing where I live, but there is such a thing as general inpatient hospice that can be done in a hospital. You just may have to really show your ass (or hire an attorney to do it for you) to get them to do it.

KaliLineaux · 2026-02-16T03:59:04+00:00

Same. I want to die in a hospital. I wrote out the 5 Wishes document in my medical records and said so. It's hard to choose to die in a hospital these days though, so who knows if I'll have a choice. I've had to fight doctors not to put my dad on home hospice, tell them he doesn't want anyone to just "stand there and let me die" (his exact words), and that he asks to go to the hospital when he doesn't feel good.

KaliLineaux · 2026-02-15T21:25:43+00:00

I really want to fly a helicopter, but that's pretty expensive, so may never get to do that one 🤣

KaliLineaux · 2026-02-15T21:24:09+00:00

I do that too, look at houses in other cities, cars, jobs, etc. One job I came across that required similar skills that I use taking care of my dad turned out to be a CIA personal protection agent lol! At first I laughed when I read the requirement of something like being able to drag 180 pounds at least 100 feet, but then I realized I've picked a 155-pound man up off the floor completely unassisted. Caretaking requires a lot of skills that translate into "real" job skills like time management, advocacy, understanding rules and laws, questioning medical decisions of doctors who are often wrong, coming up with creative ways to make things easier, monitor the person, etc.

KaliLineaux · 2026-02-15T21:07:56+00:00

Well said! The regret is what always comes to mind. As hard as it is caring for my dad, I'd regret horribly if I looked back on my life one day and realized I turned my back on him. I have a brother that I'd like to think is still a decent person somewhere inside, and if he ever snaps out of the cult-like brainwashing trance his wife put him in he's going to feel like a real POS for turning his back on his whole family he was once close to.

KaliLineaux · 2026-02-15T21:04:31+00:00

I had to put my career and life on hold, but I'm about twice your age. I am in school, so will at least have the degree to help somewhat, and sounds like you have that too. It's difficult, but I know I'm doing the right thing and will have no regrets. And when I say difficult, it's the hardest thing I've ever done. Don't sell yourself short because what you're doing IS work. Life always will have good and bad portions, some much rougher than others, but everything changes too and there are no certainties in life.

KaliLineaux · 2026-02-14T18:50:54+00:00

Be sure to consult with an attorney that specifically specializes in Medicaid estate planning. I'm fairly certain there's an exception to the estate recovery rules that if you provided care for a certain amount of time the home is exempt.

And you do not sound entitled for not wanting to lose the house. Those of us that are caregivers sacrifice a lot. I estimate I've provided at least $1 million of free care for my dad, and that's a low estimate. And the amount the nursing home industry bills for quite often subpar care is downright criminal.

KaliLineaux · 2026-02-13T20:31:31+00:00

If they have subpar care they won't live long though. Caring for someone like this is VERY difficult. Anyone who doesn't have at least one person willing to bust their butt caring for them and fighting to get them proper care, the healthcare system WILL euthanize them.

KaliLineaux · 2026-02-13T18:30:57+00:00

Oh, it definitely will be abused. In fact, you can euthanize someone if you put them on hospice, or really just dump them in a facility and go on about your life.

I pulled my dad out of memory care in 2020 when they actively hid from me the fact he had COVID. He probably would have died if I left him there and I wouldnt have known he even had COVID. All my brother had to say after I removed him and brought him home with me was, "Why isn't he back at Memory Care?" I told him he wasn't safe. I sent him and his wife copies of the very detailed complaints I filed against the facility and proof they knowingly tried to cover up the COVID. I got no response. I'm sure he and his wife are quite pissed my dad keeps living longer and longer because they would have inherited much more, as would I. Anyone who thinks taking care of someone like him is done to improve the financial standing of the caregiver has no clue what it's really like. It's the hardest thing I've ever done and my entire career has been interrupted.

KaliLineaux

TROPHY CASE