In 2007, the year I turned 30, my mom got really sick. This wasn’t a sudden illness. For as long as I could remember, she had battled Rheumatoid arthritis. She was diagnosed in her late 20s or early 30s, when I was just a baby. And she managed it pretty well, for the most part, with the help of medication and eventually hip and knee replacements.
But after almost three decades of being on drugs that suppressed her immune system from attacking her own body, she developed an infection in her lungs her tired body just couldn’t fight. And that was what ultimately took her life.
As her health was declining, she finally had to quit her job — though she certainly didn’t want to — and she could no longer live by herself. So she came to live with me for a while in my one-bedroom apartment in Oakleigh. But after a few months and a few tours through the ICU and hospital, it became obvious she was just too sick to come back to my apartment either.
So began the process of figuring out what to do next.
At first, my mother was adamant she didn’t want to go to a nursing home. And I agreed. Though her lungs were getting worse by the day, and her ability to do much for herself physically lessened at the same pace, she was still mentally very capable, and she was only 57. She didn’t belong in a nursing home with really old people where we both envisioned the worst — bedpans, bedbugs and bedsores.
Luckily, one of my best friends was a social worker and knew how to navigate this process quite well, and she helped me find her a really good assisted-living home, which my mother really liked and managed to stay at a few months before she got too sick for it as well.
At that point, my friend helped us find a nursing home that at least wasn’t full of bedbugs or people with bedsores (that we knew of anyway). And she liked that nursing home OK, but that became a nonissue because she never really stayed there for very long, as she spent more time in the hospital and ICU. She would go back to the nursing home for a week, but then back to the hospital the next. And we continued on this cycle for a few months until she finally passed away in ICU in March 2008.
It was a very emotional and scary time.
You know you are losing a loved one and that is hard enough, but trying to figure out how to care for them in the best possible way is also tough. If you have never had to make a “long-term care” decision for someone — and most of us haven’t until suddenly we do — it is a very complicated, confusing and expensive process.
My mother had some resources for assisted living, but she exhausted all of those fairly quickly. She was only 57, after all. She thought she would work at least another 10 years and would have more time to figure this all out. We both did. Lagniappe was only 5 years old at the time, and I wasn’t in the position to be able to scratch out a check to pay for any of this very costly care. And I was her only child, so I didn’t have any siblings who could pitch in either.
So once everything she had worked for her entire life was finally gone, my friend helped us apply for nursing home Medicaid, which she eventually got approved for, and it took care of her nursing home care, but that process was not a cakewalk.
And my mother had me, and I had my friend who helped us figure this all out. I really don’t know what I would have done without her guidance.
But there are many, many people who only have a distant relative, friend or no one at all. Maybe they didn’t have much family in the first place or children, or maybe they outlived them, but these are the most vulnerable among us. And sadly these are the people who are ending up or who are even being targeted for placement in the unregulated “boarding homes” described in this week’s Lagniappe cover story by Jason Johnson.
The way this often happens is when a patient like this is getting ready to be discharged from a hospital, they may be too sick to go back to where they were living or maybe they no longer have anywhere to go at all, so in walks a nurse or social worker with a recommendation for one of these places or even with an informal list of them in hand. The hospitals say they don’t advocate for or endorse any of these places, but they have to know what is going on. And why should they care? These folks are not their problem anymore once they are outside of their doors.
So their relative knows they can’t afford to pay for assisted living, which can be thousands of dollars a month, or they haven’t applied for or don’t qualify for nursing home Medicaid or don’t want to (because any assets or property the patient owns will be seized), so left with few choices, they call one of these places up, and as long as they can pay around $700 a month and/or turn over the patient’s government benefits and food assistance, these places will gladly take them in.
I have heard some of these “boarding homes” are actually trying to do the right thing, and really take good care of their residents. But it’s the ones who are just trying to make money and do the bare minimum for these poor people who they know really have no one looking out for them that are the problem.
And boy, are they raking in the money! Do the math on this. Let’s just say you have 80 residents spread out in modest houses all over town. With each resident paying $700 a month that is $56,000 per month or $672,000 a year. And that doesn’t even take their food stamp money into account, which, as reported, some of the less reputable “caretakers” use to provide very little nutrition for their residents, and then I would venture to guess they use the rest to stock their own cupboards and deep freezers with much better things than the white bread and cheese balls they are serving in these houses.
And if you have these poor people crammed into crappy little houses that have minimal rents or mortgages, and only have one caretaker who is making $8 an hour “under the table” and works no more than 40 hours a week … Well, continue to do the math, and you will see our tax dollars are making these people — some of whom are starving and neglecting human beings — pretty damn wealthy. My guess is they would probably not want anyone looking at their tax returns either.
If it weren’t for the absolute disgraceful (and what should be criminal) inhumanity of this, it would be a pretty damn good business model.
Perhaps if the state regulated group homes at all, it could be a good system for all involved, but they don’t. And when there is no oversight or regulation over something like this, well, obviously the atrocities described in Jason’s article can and do occur with great regularity. And these are just the ones we know about. There are certainly more operating in the shadows, and they could even be worse.
Granted, even if the state tried to regulate this (and they should!), it would be hard to know if people were operating in what are essentially private homes. But they could certainly pass legislation to make it a felony punishable by hefty fines and enough jail time that folks would think twice before doing this. Right now, there are no consequences whatsoever.
Like Meoshi Nelson Williams told one of her residents’ family members who threatened to complain, “OK … and? That won’t be the first one … Complain … go complain.”
Why should she care? She knew no one was going to do anything to her. If she hadn’t messed up and gotten in trouble with the Feds for wire fraud, she would most likely still be operating with impunity.
I urge our state legislators to take this matter up immediately and regulate these homes! Stand up for these people who can’t stand up for themselves!
You never know, one day it could be your family member who ends up in a house like this and who is getting a catheter shoved up his urethra by a woman who just learned how to do it by watching a video on YouTube.
This page is available to subscribers. Click here to sign in or get access.
It looks like you are opening this page from the Facebook App. This article needs to be opened in the browser.
iOS: Tap the three dots in the top right, then tap on "Open in Safari".
Android: Tap the Settings icon (it looks like three horizontal lines), then tap App Settings, then toggle the "Open links externally" setting to On (it should turn from gray to blue).