DisElderly Conduct
Judy Karofsky, author of DisElderly Conduct, joins Steve to share her mother’s harrowing experience within the US for profit eldercare industry.
If civilizations are judged by how they care for their elderly, our report card is already written. Should there be anyone left to judge us – should humanity exist long enough to judge us – we’ve flunked.
Steve’s guest is Judy Karofsky, author of ‘DisElderly Conduct: The Flawed Business of Assisted Living and Hospice,’ who provides a critical examination of the elder care industry. Judy discusses her own struggles with assisted living facilities and hospice care, highlighting the systemic issues driven by the profit motive and lack of federal oversight.
Assisted living is meant to be for seniors who don’t yet need a nursing home. The facilities are supposed to provide the dignity of independence with up to three hours of care per week. Unfortunately, that means from zero to three. Often, it’s zero – with no nurse on staff.
In many cases the move from independent living isn’t a health decision. It’s business. The assisted living business is about real estate investment, not the needs of our nation’s seniors.
“Big investors, big REITs, Real Estate Investment Trusts, and yes, private equity have seen the potential and they’re investing and the decision-making moves farther and farther away from the individual facility and farther and farther away from the resident.”
Steve makes a case that will be familiar to our followers: that healthcare – and its federal oversight – are policy decisions, connected to ideology. It’s the belief that there is no public money.
”There is only private property and there’s only private equity and there’s only private capital. And that when you impose regulations, you’re imposing undue constraints on capital to do what capital would like to do. We have to start thinking about the world differently.”
The episode illustrates the urgent need for reform in elder care. These challenges will one day touch everyone’s lives or those of their loved ones.
Judy Karofsky was a city council member and one of Wisconsin’s first women mayors (Middleton). During her term of office, she established a now-thriving senior center and emergency medical services. She served on the executive staff of a governor and held multiple roles in housing and economic development for a state agency, a nonprofit housing development organization, and her own research firm. Before organizing and providing care for her mother, Judy filled interim positions for a statewide women’s network – focusing on elder economic security – and for a coalition of state aging groups. Serving on nonprofit and municipal boards, she participates in policy discussions and comments publicly on demographic trends and urban growth.
FULL TRANSCRIPT with EXTRAS
Steve Grumbine:
00:00:43
All right, folks, this is Steve with Macro N Cheese. You know, I had a very, very unfortunate, yet probably a pretty standard life event last March.
Most of us have cared for a parent or taking care of a parent in some way, shape or form. And my mother, who passed away on March 3, 2024, she was a very important person in my life.
And she fell and she broke her leg right around Christmas the year prior.
And it was in that time, from Christmas to March 3rd, that I got to really experience the pain of not having advocacy within the medical system, within the elderly care, within the hospice care for my mom. My mom was given a number of days to be “strong enough” to either go through physical therapy or be sent to hospice.
And in that time, the hospital and insurance made no bones about it.
If she could not participate, like right then in physical therapy, they were considering her for palliative care or they were just going to release her on her own. And whatever happened, happened.
And we were warned that there was only six months of care that she could get through hospice, so basically get on with the dying. And I could not believe that I was sitting there with my sister having to make this decision for my mom, who was really incapable of answering a lot of these questions and having that really tough conversation with her because she simply had a bypass. She had a rod shoved in her leg. She had all kinds of things and she was an 80-some- year-old woman and she didn’t have strong muscular anatomy.
She was weak. And the choice was, “Hey, we’re not going to do anything to help you. We don’t have time to help you. It’s too much money to help you.
But get well or die.” And that is where we went to.
So when I found out about Judy Karofsky, who is going to be my guest today, she wrote a book called DisElderly Conduct: The Flawed Business of Assisted Living and Hospice. And that really, really struck a nerve. And I’m not going to lie when I read this book, when I accepted the invitation to do this, it broke me.
It put me into some form of PTSD, some form of reliving my mom’s experience. And this podcast will hopefully shine a light for you all.
Because every one of you, no matter whether you’re rich or, well, if you’re rich, maybe you get some choices that are a little different for the rest of us. But for the most part, this system is not set up to actually provide you with a good outcome.
It is literally set up to be a profit motive, you know, for a way of these companies to make huge sums of money, draining your last life savings and providing you very little care in return. So with that, let me introduce my guest, Judy Karofsky. She was a city council member, and this is not the important thing.
She was a city council member and one of Wisconsin’s first women mayors. Now that is important, of Middletown [Wisconsin]. During her term of office, she established a now thriving senior center and emergency medical services.
She served on the executive staff of a governor and held multiple roles in housing and economic development for a state agency, a non-profit housing development organization and her own research firm.
Before organizing and providing care for her mother, Judy filled interim positions for statewide women’s network focusing on elder economic security and for a coalition of state aging groups. So with that, I’d like to introduce my guest, Judy Karofsky. Welcome so much to the show.
Judy Karofsky:
00:04:50
Steve, thank you for this opportunity to share our experiences and to share our experiences with your wider audience.
Your story made me return to the days when my mom was leaving me, leaving us, and that was not easy and we had complications with respect to hospice coverage and care in the assisted living facilities. My mom actually lived in six different assisted living facilities. I moved her over a period of four and a half years.
She knew what was going on in many ways. I have to say, unfortunately, she was not dying from one of the calculable dying experiences: a heart condition or diabetes or cancer.
And she did not have Alzheimer’s.
So when they said to me “She’s not going to die within six months, therefore she does not have to be on hospice”, they took away our total source of help and support, even down to the wheelchair. So the thought that these are economic decisions, not really health decisions, you caught it right away.
And I am so sorry for the struggle that your mom went through, and my mom. I also need to say, and I try to do this wherever I’m called upon to discuss the book DisElderly Conduct.
For some people, it does work out.
We all know that. Some people are capable of saying that the leaving, the leave-taking, the last moments were as they expected, without pain, without family angst. But that’s not a universal experience.
And I learned that while my mom was in four and a half years in six different facilities listening to other people, I had the opportunity, because I had retired by then, to be in the facilities constantly, sometimes 24 hours. And so I did talk to other people. And this book really began, not as a book, it’s not my intention to write about the experience.
It really began as a series of discussions and meetings with other people and observations. And then, I don’t know, the pages started to occur and the book became written.
Steve Grumbine:
00:07:15
Well, I can tell you right now, the way the book started off, I’m still feeling it. Okay? I could envision the mom-falling-down moment. Obviously that was what started things off for my mom, was a fall. But you had several falls.
And then of course, rather than actually dig into figuring out what’s going on, they trying to pass you off some opiates to try and help your mom. And just like my mom causes constipation and all kinds of stuff that is incredibly difficult for someone elderly and without the kind of muscular support needed to be able to deal properly with constipation. And lo and behold, you give her laxatives and now you’re fighting the other thing.
I mean, can you talk about before you found out the fiasco that you were about to embark on, can you talk about the lead up, your whole moving her and getting her into assisted living and the whole the beautiful signs and the beautiful landscaping and then the actuality of what the experience was? I mean, I want to hear what led up to. But you still got stars in your eyes that you’re making all the right moves.
Can you take us through your beginning?
Judy Karofsky:
00:08:34
And I can even start before the beginning, because I had an opportunity in 2006, 2007, to join colleagues from the University of Wisconsin Graduate School of Business, of which I was a graduate, to do a white paper, a study on institutional investing in seniors housing. And what drove us was the notion that at that time, investors didn’t even know about this thing called assisted living or even elderly care.
The categories for real estate investors were multifamily housing, commercial buildings, institutional buildings, manufacturing areas, international. But there was no category for investing in seniors housing.
So we did a paper for the Real Estate Research Institute asking people who managed funds about the risk-reward ratio and how they saw those kinds of investments.
And then, as you know, everything changed in 2009, 2010, the housing bubble broke and people became less willing to even sell their homes and move into the kinds of facilities that we were talking about more time went on. The demographics took over. Steve, that’s the hidden ingredient here. The numbers of people who are 65 and older, 70 and older, 80 and older.
Those numbers continue to grow. And thank goodness we’re all living longer.
And for the most part, we’re living healthy lives as our moms, both your mom and my mom both were, until their ends became unforgivably complicated.
So my mom, now, to get back to her story, or the last few years of her story, she was in her retirement home in Florida, and there was one incident for which she was hospitalized. I’m an only child, a grown only child. And we made the decision that she could move to my community. And she spent seven years in independent living.
And yes, you caught it.
That’s where the attractive lobby, the dining room, the activity list attracts people, and the advertising is directed towards you and me, towards the people who are making the decisions, assuming that there will be a rich life, rich days filled with fun and activities, and then something happens. And that’s where everybody’s understanding of this.
Anyone who’s paying attention to what’s going on has to understand that the move from independent living to assisted living is not what you just heard, because assisted living is not a health choice.
In the state of Wisconsin, assisted living facilities are limited to a maximum of three hours of medical attention a week, which means it could be from zero to three hours. [Wow.] And in many places it is zero. Because many places do not have a nurse on board, a nurse on staff.
But assisted living facilities proliferate around the country. They began in Oregon in 1980.
Somebody named Keren Brown Wilson, after her mom, at age 55, suffered a stroke and was institutionalized and said to her daughter, “Get me out of here.” She was in a nursing home. That’s all we had.
So Karen and her husband, they were both gerontologists, came up with the concept where people could be in an apartment of their own, a room of their own, to have their meals when they wanted. They could leave if they wanted, of course, probably with an elder daughter or elder son. But they had some freedom. They could lock their doors.
They had some dignity. They were not in wards. And after a while, Keren Brown Wilson opened another facility and another facility and another facility.
Judy Karofsky:
00:12:49
And Steve, this is what was missing. And to this day, this is missing.
There is no federal oversight, no regulations about this animal called “assisted living” that is just growing all over the country. New ones come into my area all the time. I receive the advertising all the time.
We knew how problematic that was during the early months of COVID. Steve, we never knew how many deaths occurred in assisted living facilities because they never had to report because they’re not regulated by any federal reg[ulations.] State regs, yes.
And actually after a few months, they did, to their credit, start to volunteer information, but we’ll never know the true numbers from those years. So now we have totally unregulated biz. And I think you already touched on what’s happening.
Big investors, big REITs, Real Estate Investment Trusts, and yes, private equity have seen the potential and they’re investing and the decision-making moves farther and farther away from the individual facility and farther and farther away from the resident. So the decisions that you were confronted with, how long your mom could be there. This is so hard for me to repeat, having listened to you.
How long she could be in a specific place when she might have to leave. Steve, those might not have been on-site decisions, as maybe you already knew.
They were marching to their manager’s drums, doing what they needed to do to retain their jobs. One expose that’s been on PBS and Frontline, Life and Death in Assisted Living. That was about seven or eight years ago.
I watched it recently to remind myself of how and what is included. But one of the points of that is that assisted living facilities actually have a backdoor that they want to keep people there.
That’s not exactly the story of your mom’s progress through care. That wasn’t really care. But they don’t want people to move out because it’s like an apartment complex. It’s like a hotel.
Once a room is not rented for the night, there’s no way to ever get that money back. So they do want to keep people in.
Steve Grumbine:
00:15:22
That business model is very, very similar to the private prison complex as well.
Judy Karofsky:
00:15:26
Yes.
Steve Grumbine:
00:15:27
You know, keep every jail cell full because we can’t ever make that money up if we leave a cell open. And I want to pivot to something that you said. For everybody that follows this podcast that seeks economic understanding.
I want you to be fully aware: these are policy decisions made by ideology. Ideology that there is no such thing as public money. There is no such thing as the public commons.
There is only private property and there’s only private equity and there’s only private capital. And that when you impose regulations, you’re imposing undue constraints on capital to do what capital would like to do.
And we have to start thinking about the world differently.
As an MMT podcast, we should fundamentally understand that every one of these issues can be solved by a federal government that understands its currency-issuing power, its ability to fully fund and make end of life a wonderful experience. An experience without stress, without worry, without concern. But that again becomes an ideological war.
Where you can see, today our modern society is dog eat dog, cutthroat rules and regs. “No, you didn’t deserve, you don’t earn it. You are not worthy of this. I alone am worthy because I have more money.
So therefore, since I am wealthy and I’m good, I’m the best person possible. And for those that are not, you know, you should have made better choices 30 years ago, whatever.”
And this logic is pervasive in our movies, our television shows, everything. And I think to myself, what is wrong with society that we allow this?
You watch Star Wars and everybody during Star Wars is 100% on the side of the rebellion. But in real life, the minute that the Empire speaks and Darth Vader goes live, everybody is supporting the Empire.
So we are a very conflicted society to begin with. But the propaganda we’re fed about, “You know, you should have made better choices. You should have done…” Folks, when you are at that point…
My mom had saved money, she had taken care of kids her entire life. You know, there was no reason for her to be rushed into the ground. There was no reason for her to be rushed into a crematorium.
There was no rush for that except for some bean counter trying to make a few extra bucks off of the death of my mother, quite frankly. And if she was only one, maybe this wouldn’t be as big a deal. I mean, it would be big for me.
But this is what we’re facing as a society that is growing older, that is elderly to begin with, with the Boomers coming through, Gen X right behind them, et cetera. We are looking at an explosion of need for elder care. We are looking at a country that has zero meaningful health care.
And if you don’t have the money, you’re not getting the service. And let me expand this one more minute before I bring you back into the fold, Judy. I have a child who has special needs.
He’s autistic. And for the life of me, I say “I’ve got to live forever to prevent him from being destroyed by this system.” And because of this capitalist, massive pull for profit seeking and rent seeking and all the other behaviors that scar our society.
I worry about children with special needs when they go through their end of life and they’re not able to articulate what their needs are, and if their parents didn’t live forever, who will advocate for them?
It’s completely unsustainable and my greatest personal fear is dying alone in one of these places, left to suffocate on my own phlegm in pneumonia or whatever. And that death rattle on my own and not having someone hold my hand and stuff. That fear is real and it drives so much of my activism.
So with that, sorry for the rant, but that is all heartfelt right there. And, Judy, your book goes into this even more so.
I mean, the stories that you had to go through, the experiences you had to go through, the shocking to hear the home health folks that you brought in would be sitting there while your mom is in need, sitting there on the phone trying to score their next client. I couldn’t believe. But this is capitalism on steroids. And it’s not benefiting off of some wonderful outcome.
It’s benefiting off of your misery, your immiseration, your struggle, your death. And your fears. They capitalize on your fears because they know you need help.
And what broke my heart the most was you were like, “You took 15 minutes too long.” 15 minutes too long by being away and allowing them. And your mom goes through what she went through. Can you talk to us about that experience?
Judy Karofsky:
00:20:40
There were so many when I. I was there all the time. And this is what you’re referring to.
It was actually a Martin Luther King day on a January day when somebody who was concerned about my emotional strength suggested that I have lunch and do something for myself. Common kind of recommendation. And I did that, Steve. I had lunch and I went shopping somewhere, and then I went back to my mom’s facility.
When they told me that, as I walked in the door, they said, “Your mom is on the floor.” And that’s when my mom had fallen and broken her hip, but they were already trying to get her up. These are the nurse and the “nurse.”
And the director of the assisted living facility had already tried to take her to the bathroom twice. I saw how she was standing on one leg and the other leg was wobbling. And she was saying her exact words were, “You’re making matters worse.”
They did not want to bring an ambulance to that facility. For some reason, the nurse/assistant director didn’t want to have an ambulance drive up.
So we just waited through the day because she knew that there was an X-ray service that would be able to X-ray my mom on site, not take her to an ER for that X-ray. So that person finally arrived about five hours later. I heard the screams as she positioned my mom for that remote, that type X-ray.
And then they decided that she saw it right away, it was a broken hip. They took her to the hospital. I followed the ambulance.
And when I came to, when I finally understood what was going on was when the ER physician gave my mom a shot of morphine because she’d been in pain for all those hours. And then I felt the nausea. And that’s when I made the decision that this will not happen again. I will be on board.
Of course, that isn’t how it worked out because I did go home some nights and I did receive calls that my mom was on the floor. My mom was on the floor. My mom had fallen again. And to carry a theme here in one location, those calls came to me every night, every second night from a call center in Edina, Minnesota.
Look at a map. I’m in central Wisconsin. That person in Minnesota was calling to tell me that my mom was on the floor again.
And as I’ve said many times, I learned her first name. We were on a first-name basis. There is so much wrong with this model, and it is a profit-making operation. Profiteering.
Steve, there was one, two hopes, perhaps, but they’re lost in what’s going on now in our country and in fact, the world. In January of 2024, before your mom had passed, if I heard correctly, there was at least one meeting of the Senate Committee on Aging.
In that meeting were a senator named J.D. Vance from Ohio, but also [Elizabeth] Liz Warren from Massachusetts. And the Washington Post did an article after the meeting.
They interviewed Liz Warren, who said, “We have to get private equity out of this before they’ve gobbled up every facility in the country.” Well, we know what happened after that. That was January of 2024 election. So nothing has happened since then.
I watch and I listen and nobody is mentioning assisted living or elder care. And I don’t want to even say this in the “Beautiful Bills” that are being passed. I don’t want to laugh. I don’t want to laugh at it, but I am.
Steve Grumbine:
00:24:30
It’s the only healthy response. It’s the only healthy response.
Judy Karofsky:
00:24:35
And as we know, President Biden did adopt or promote staffing level minimums for nursing homes, not for assisted living, but whatever. It’s the same industry and people do confuse the two, but I’m here to tell you they’re very different from one another.
But he did do that, address the staffing issue, and of course that’s all been eliminated. That was one of the first things that happened with the new administration.
And what I might have left out from that Senate Committee on Aging hearing is that the loudest voices the people who were present were not surprised, were the lobbyists for the industry who were quoted saying, “We don’t need regulations.”
“We’ll only have to charge more if we have them,” as you can imagine they would have said. So we need your conversation, my conversation, your experience, my experience to be in the ears of policymakers.
And let’s understand that those policymakers, including my very own congressman, have gone through similar situations.
My congressman, Mark Pocan, has let me know in the past when he was going through this angst because his mom was in an assisted living facility, how difficult it was for him.
And I’m trying to connect with him, trying to connect with the people who have the ability and the responsibility to do something about this, to say, “Hell no. They’re not going to go there. And as a matter of fact, they’re not going to be thrown out of there.” And then the “they” becomes “we.” Because as you said, we’re nearing those ages.
I am actually of that age at this time.
Steve Grumbine:
00:26:21
I just turned 56. And, you know, I know that to some that seems young, and I know to others that seems old. Right? It just depends on where you fit in the continuum.
Judy Karofsky:
00:26:31
You are in this discussion because you are and you have been a decision maker.
Steve Grumbine:
00:26:37
Yes.
Judy Karofsky:
00:26:38
“Advocate.” That word that I heard you use, you know that “advocate” is one of those words we’re not allowed to use any longer. It’s on the list.
Can’t say “advocate”. Can’t say “advocacy.” And I learned it in many ways. I learned it because in my mother’s record, they said, “Judy has made suicidal statements.”
They wrote that. It was conjured up from a reaction that I had when my mom was taken off of hospice the first time. She actually was taken off of hospice twice. And there was no basis for it. Here I am. But they actually did include that.
And the way hospice records work, they just repeat. They’re electronic records. They just repeat and repeat and repeat. So I have seen my mom’s records from hospice.
They’re not my records, but that statement is there. Half a paragraph later it will say, “And Judy appears daily to help her mother with anxiety.” So I know that I was doing some good.
But with the advocates and advocates on-site are most afraid of retribution. “No, I don’t want to go to an adult child’s meeting. No, I don’t want to be seen there. No, I do not want to meet with the state ombudsman.” I did. I went.
The ombudsman became my friend. But the ombudsman could only do so much.
She could make recommendations sometimes and try and ease some kind of friction that was occurring between the caregiving staff and the residents. But some people would not even speak to the ombudsman. What’s the phrase? “I’m from the government and I’m here to help you.”
They were turned off by her presence.
Intermission:
00:28:27
You are listening to Macro N Cheese, a podcast by Real Progressives. We are a 501c3 nonprofit organization. All donations are tax deductible. Please consider becoming a monthly donor on Patreon, Substack, or our website, realprogressives.org. Now back to the podcast.
Steve Grumbine:
00:28:54
You know, I think to myself I am far less generous when it comes to the political world.
I have come to believe that we have been captured by not just oligarchy, but by capital interests in general. Our institutions have been captured.
There’s been so many things that are captured by very, very powerful people with deep pockets that in essence, I hate to say own the government, but they have sway, outrageous sway, over the outcomes.
There was a Princeton study that I frequently point to, in 2014 that showed public opinion has a next to zero impact on policy, which is terrifying when you think about how you’re screaming, you’re in your most vulnerable moment, right? And there’s no one listening. And then you go to the politicians and they’re on someone’s payroll. “They’d love to help you but can’t.” On and on and on.
And I think to myself, a lot of these rights that we all like to claim we have, but don’t really have any meaningful evidence that they’re being enforced or provided “the right to pursue life, liberty and the pursuit of happiness” and, you know, that “government is there to spend on the public purpose” and on and on. None of these things really evidence themselves. In reality, they’re kind of words that we were told as children in school.
We were reinforced to study and take tests to reinforce the programming. But in reality, when we seek remediation from our representatives, there’s nothing that fundamentally changes.
To quote Joe Biden, “Nothing will fundamentally change.” And you know what? He’s right. And we have hope.
This disease called “hope” that gives us the idea that we can simply put an “I voted” sticker on our forehead and take a selfie for Facebook and somehow or another that constitutes democracy.
When in reality there’s not a single person, I would venture to say, not even Donald Trump, okay, would in any way, shape or form want to see, you know, his family member put through this either. I mean, like just on a selfish basis. Wouldn’t want to do that. So this should be a universal thing.
Everybody should be like, “Yeah, well, Corey, this is a no brainer.” Of course we need to fully fund each of these things to provide maximum care.
And yet we can’t get a simple thing like Medicare for All passed in this country. We can’t get student debt eliminated, we can’t do anything that would fundamentally change for the better the lives of regular people.
And so when I think about your book and I want to come back to this, I mean, the Bait and Switch chapter was really powerful. And I think there’s a term they use in professional wrestling called kayfabe.
And what kayfabe is, is that the wrestlers and all the people, including the audience, have an informal agreement that they’re in character whenever you see them.
Like you would never see a wrestler with his hair down, dressed regular and just going grocery shopping when you see them, they’re in character. And it’s a sell of an idea, a concept, and everyone buys into it for a little while.
They go into this live action, role playing mindset where they are ultimately characters cosplaying in this role. And I think a lot of that goes with government.
We believe, we fundamentally believe we’re going to do these things and then in reality they switch it up. They’re not there to serve us, but we believe they are. We fundamentally want to believe they are, and yet evidence suggests that they’re not.
So I ask you this knowing full well that you probably have a little bit more faith in the electoral process than I do. I don’t want to get into a partisan conversation because I’m probably Left of wherever that would be anyway.
But when I think about just humanity and regular people just caring for their mother, father, kid, where is the energy? Where is the movement?
Where is the that we can get rid of this kind of bait and switch, where we can actually bring the care back to these things or insert it in any way at all? Because right now I don’t see any evidence of it. I don’t see any evidence of meaningful change.
And again, maybe I’m not looking hard enough, but I am genuinely terrified.
Judy Karofsky:
00:33:37
As was I. Steve. Here’s Judy Karofsky. I’d never written a book. I didn’t intend to write a book. I kept notes, I sat with my mom some afternoons.
I had a new laptop. I wanted to fill it up. And then the book, I’ve said so many times, this book wrote itself and it was accepted by New Village Press. Last summer.
And I didn’t know what to do next, but they led me through it. There was some editing and there was some more editing, and then came the election and can you see me face plant? Is that what they call it?
I was like, well, that’s the worst time to come out with anything. Any request for a public policy dialogue, not going to happen now.
But in a series of conversations, one being a message that my publisher sent to me, I realized it’s like, if not now, then when? This is when we really do have to make these points.
Several people have reminded me in the last week that that’s how civilizations are judged, by how they care for their elderly and their disabled. And when I think about, what can we do? You know, you skipped over. I did work on the staff of an executive of a state. I watched constituent relations.
I know what they did. And that was not recent, actually, it was a while ago. But I know what they did when letters came in and phone calls came in.
And I don’t send messages, by the way. Everybody sends messages. I don’t, because I know I’m going to get a form back. And they’re just so discouraging. But I have stood with signs.
I have taken part in demonstrations. Who of us has not? And if there’s strength in numbers.
I recently read [Howard] Zinn’s book on American history and what it said to me, what we did over and over and over was leaflet and then demonstrate, leaflet and then demonstrate.
And he actually, I don’t know how he does this, but he can tell you exactly how many people were in a demonstration in various cities for various causes. And that is what we’re doing now. But it’s a panoply. There’s no message. There’s a lot of messages in those signs and causes.
I mean, everything from the Ukraine to abortion to the Middle East.
And if we can start there, and I don’t want that to be the message of this conversation between you and me, that we have to now stand up and say, I have a way of saying it, by the way, “I’m too old for this”, but I add another word, that’s my favorite sign, over and over and over. But somehow we need to coalesce. And I’ve said this. I said this the night of my book launch.
One of the first agents that I contacted, who contacted me back, which is more important, said, “Do not say that your book is for everyone.” Everybody says that your book is for everyone. That’s a standard question on the query that agents have online and you can respond to if you want.
And I wanted to many times, do not say it’s for everyone, but this is what I said. “Every one of us will, in time be a resident of a care facility or a recipient of care services.”
Every one of us, Steve, will be a decision maker for someone who will be in a care facility or a recipient of care services. So as I said the other night, do the math. This really is an issue for everyone. You’ve said it and now I’ve said it.
And I don’t know how to move from that point to the next point. But somehow we really do need to call for action. This is a call for action. Stop it. Stop doing what was done to you and was done to me. No more.
Steve Grumbine:
00:37:26
That’s exactly right.
I hate to say this, but I think people, they don’t feel the need to do something until it becomes personal, until they’ve had “an awakening”. Okay? You can have all the head knowledge in the world. You could read this book.
And until you’ve experienced it, I think America is so atomized and so turned into this kind of libertarian hellscape of individuality that we don’t realize your struggle is my struggle. My struggle is your struggle. In the end, together we rise up.
If we don’t stand with each other, no one will stand together.
And one of the things I want to pull us back to is, you know, to give a little context to this, is people frequently, especially in the business community, would like to strip away regulations and so forth. But one of the things that jumped out, aside from the fact that there are no real regulations, is that we look at the air traffic controllers.
They slashed and burned the air traffic controllers, and now all of a sudden we’re having all these problems with planes crashing. Well, fancy that. When you underfund something, it underperforms.
There’s a real cause and effect in terms of proper funding with proper regulation to create proper outcomes. Staffing is one of the big pros. Because guess what? Staffing is a key cost item in a capitalist budget. I have an MBA, just as you do.
And in my MBA studies, I realized the number one cause of business is shareholder value: to maximize shareholder value. And who are shareholders?
Well, you know what the twisted and perverse thing about this is you and I might be shareholders and we have a 401k plan that our employer provided and we invest in, and lo and behold, your money may be going to one of these private equity firms that owns these elder care facilities that are being understaffed, underperforming, and quite frankly a literal terror for the people that are “in this system.”
What are some of the regulations and some of the business practices that we’re experiencing that we could address if we actually had a functioning democracy where people listened and learned about it?
Judy Karofsky:
00:39:39
Well, you hit the main one, of course, the one that’s tangible that I saw all the time. People who care, really care. And my mom cared for them too. She loved some of her caregivers. She tried to love all of her caregivers.
Her first winter in assisted living, she was chosen the Valentine person. And so when she woke up in the morning, there were hearts all over her door.
Then they are under trained, they are underpaid, they are underrepresented. So let’s start with unionizing them so that we can have common understanding about their pay level, their training level.
By the way, that call for minimum staffing, that did pass with the change of administrations. It did not include any criteria for education or training or pay. So let’s not just include them.
And that does lead us to the immigration discussion, if we want to touch that word, because so many of the caregivers are immigrants to this country. So what’s going to happen from now on? The dam is broken. The river is flowing through. They won’t stay or they won’t come.
Steve Grumbine:
00:40:49
Yeah, you know, can I just touch on that for a minute with the MMT perspective that we bring. We’ve long since advocated for a number of things, but two primary ones are a Federal Job Guarantee for anyone that wants a job, period, federally funded, locally administered. And the other one is providing things like Universal Basic Services and these sorts of things.
I would believe if you consider an expanded Medicare for All type approach. I’m not a big fan of Medicare.
I personally would rather have what they used to have in the UK which is slowly being ripped apart by private interests in a national health service. These are all things that could be financed right up front without any problem.
So a lot of the problems we’re hand wringing over, you can almost trim away the fat and get rid of the noise and just say point blank, we have been riddled with deficit fears, debt fears, fake debt fears, by the way, because we create the currency. So we’re not going to China to borrow US dollars from China. It’s just preposterous. Any more than China’s going to the US to borrow Chinese yuan.
You know, none of this is real. Japan has a 300% debt to GDP ratio, there is no solvency constraint here.
If it’s for sale in US dollars, it can be paid for in US dollars by an act of Congress, by an act of our government. So when I think about the regulatory environment, it’s saying, “Okay, Mr. Business, your profit motive can’t afford these regulations. So in order to allow you to maintain your profit position that you want to maintain and to allow you to run your business as you want, we’re simply going to not do these things.”
When in reality, if we nationalize these things instead of leaving it to private actors with profit motives, we could literally create the idyllic framework for not just elder care, but special needs care. You name it. There’s literally no reason the immigrant story becomes less of an issue.
Because when you as a currency-issuing government say, “We want to do a thing,” well guess what else you can do? You can actually finance the education of the people that need to do those jobs and do them well. And you can provide them more than a living wage.
You can provide them with pay commensurate to the work that they’re doing.
So when I think of immigrants being cast aside and thrown out because we as a nation have made decisions to a) demonize them, but b) also to eliminate funding for everything that matters in society, to literally strip away the social fabric and the safety nets of the society. The chickens are coming home to roost, so to speak, right? I mean our infrastructure is crumbling. However, can we afford to rebuild our bridges?
Our children are being left behind.
This is the first generation that will literally have less to look forward to, will not be able to take care of themselves than the last generation because they have cut so much of the social fabric out of society. This dog-eat-dog, libertarian kind of construct that Ayn Rand would probably even blush over.
I’m curious, you know, when you think about that, when you hear what I’m saying, it’s kind of like, “Okay, we can end the conversation now because that’s the answer. We’re just going to go ahead and fund it, we’ll make it happen.” But when you look at it instead, it’s the most bitter, most ruthless approach.
We’re going to kick out the immigrants. We’re going to strip away the hours. We’re going to reduce your pay. We’re going to eliminate the need for college education or whatever it is and dumb it down so that we can get lower cost workers. It’s all self-inflicted, is it not?
Judy Karofsky:
00:44:38
In one facility, somebody was let go because she took a cup of coffee after breakfast from the resident’s coffee urn.
Yes, that’s how we are responding to people who come here wanting to help, capable of helping, internally, capable of helping, but they’re not supported.
Steve Grumbine:
00:44:59
Just absolutely awful.
Judy Karofsky:
00:45:01
I have one glimmer of hope that I do want to share with you.
Steve Grumbine:
00:45:05
Please. [I will.] Give me something.
Judy Karofsky:
00:45:07
Last week, just before this book launched, there was a book review in progressive.com, it’s on their website.
It was quite supportive of the book and I know the person who wrote it, and he is someone who went through the experience of having his mother evicted from a facility in Wisconsin. And he has written about that. His name is Bill Lueders. He did the review.
But the next day there was a small item in the Hospice and Palliative Care Today newsletter. So these are the very people who were not supported. We’ve just said that.
But also making those decisions that they had to make because of the organization. We have said that earlier in this interview and this is what they wrote:
“How many stories Karofsky shares throughout about the final years of her mother’s life in Wisconsin. And they are the example of awful things that can happen when facilities are understaffed and staff members are overworked. But also because Karofsky’s first reaction was to wonder whether my mother struggled in these situations.” And here’s the editor’s note Steve:
“Though printed news typically lifts up the good, compassionate moments of hospice care, most all of us have experienced negative accounts professionally and or personally. While this book is sure to give significant insights, perhaps the most important lessons are waiting to be validated from your own family caregivers, employees and volunteers. What stories are behind your lower-than-you-want hospice scores? Dig deeper. May we all listen, learn and improve care.”
So there’s an appeal from the editor of the hospice organization letter saying, “Don’t be held down by the criticisms and the organization, but search within yourselves to be the good kind people that you are.” And that’s really what we’re calling for, a way to support basic human kindness.
Steve Grumbine:
00:47:15
Yeah. You know, when I think about what you’re saying here, I really struggle because obviously you eloquently point this out.
And I can confirm because I was having literal heart palpitations reading it. There are so many things that you are not trained to answer in those moments.
You are being hit with a fire hose of decisions you have to make on the fly, decisions that have life and death consequences. I mean death defying. Like you see these thriller movies. These are real life thrillers. And I think to myself, and this is before I read your book.
So what I’m about to say is just me in the party of one, trying to mitigate my real, honest to God fears that I have on a daily basis. I literally live in constant state of fear over this, having experienced what I did with my mom. And quite frankly, my father.
My father was a little different because he had been sick with a terminal illness for 20 years. He outlived the terminal illness by 10 years more than he should have.
He had something called progressive supranuclear palsy, which literally kills your brain little by little bit. And he would suddenly be in the middle of something, just stop being able to do it, like part of his brain die right then.
It was like watching a computer falter and shut down. But you know, when I thought about this stuff, right, I kept thinking, you know what? I need to lose weight.
I need to start working out so that my arms have muscle in it. So when I am older that if I have to push myself up on the bed, that I can do it.
Little things like keeping my mind mentally sharp, reading as much as I can, trying desperately to stay current on as many subjects as I can. Little things like that. Because I remember watching my mom, and this is what is so terrifying.
Each time they tried to do something, there was a new leak in the hose. It was so hard because we walk in, like I said, she went in with a broken leg. We found out we have a kidney problem.
So we got to put a drain tap in the kidney. Then we find out, oh, wait a minute, her leg that we need to do the operation on doesn’t have enough blood flow to it.
So we had to do a bypass before we could fix the break. That with all these surgeries and stuff like that, my mom simply didn’t have the strength. So in the back of my mind, I’m saying I need to make sure.
Because when my mom did try to roll over after having the bypass, the artery in her groin sprung a leak and shot blood everywhere. And I was sitting there with my mom holding her hand when this happened. And I’m probably going to get sick. I went ice cold. I fainted.
They took me down to the ER, from the hospital room to the ER. I’m in the ER now as my mom is literally dealing with that.
And when I came back up a few hours later, that was when we were kind of given kind of, “Hey, you know, we’re going to move her to another room and she’s going to have one more week and then you’ve guys got to figure out.”
So my sister was on the phone with all these rehabilitation places and so forth, and the doctor said, “Look, your mom doesn’t appear to be strong enough to do any of these things. She can’t even lift herself up. She can’t sit up. She can’t do anything.”
So I came up with my own little battle plans for how I was going to deal with each of these things. So that I would be stronger, that I would be less overweight, that I would be smarter, that I would have my brain as cognitively intact as possible.
But there’s no way to prepare for this, is there? I mean, there really isn’t, other than being independently wealthy.
And is this kind of like a weird version of being a prepper? I mean, I felt like I don’t know how to live life if I can’t put that part of my life to bed.
I know it’s going to be scary to die, or maybe it shouldn’t be or whatever. I don’t want to live my life worrying about being ignored. Like, what preparation is sane and is not sane? I mean, where do we go with this?
Judy Karofsky:
00:51:24
As my mom said when they tried to move her, “You’re making matters worse.” We make matters worse, don’t we?
Steve Grumbine:
00:51:33
Yeah.
Judy Karofsky:
00:51:34
And I understand this. The simple call is not just for regulations or just for oversight.
As I said recently, somebody thought when I was talking about federal oversight, that I was talking about cameras in the rooms. Well, that’s part of the story, but that’s not what I was talking about. But it’s a humane overview. And let’s not complicate this.
And we have so many players here. That’s another point of this book. In time, I was dealing with hospice, assisted living, and my mom’s personal physician from her hospital.
And changes in orders had to go through all those three conduits. And sometimes a change in medicines had to be faxed, faxed, if you please, to the facility.
So a change wouldn’t happen until the next day, or couldn’t happen until the next day. There were so many players. And at the top, there really is a lack of coordination.
And there are people funding this as we’re speaking, as we’re having this conversation that is breaking my heart, which was already shattered. They’ve been making money while we’ve been sitting here today. They’ve spotted other sites. They’ve spotted other places.
They’ve decided to advertise the happy lifestyle that never does happen. And they’re not paying attention to the reality of it, that someone’s life is really in the balance. That’s what was going on with your mom.
I wasn’t there. I don’t know this. I’ve listened to your stories, but I would bet that hospital was quite concerned about being audited.
Audited and maybe by the federal government for too many deaths occurring.
Steve Grumbine:
00:53:12
So, you know, as we come to a close here, I mean, there’s so much more I want to talk about here. But to highlight your book, what would you tell our audience? What might we have wanted to say that we didn’t say in this call?
Judy Karofsky:
00:53:25
I can’t and don’t make recommendations. People tried that one. There are no recommendations. The key takeaway is the experience is universal.
It’s universal, and I hope this is your story or someone else’s story. The passing goes calmly in those moments between life and death. What a blessing. A blessing for all of us.
But that’s not the way our current system is set up. That’s not what it is set up to provide. There’s conflict between caregiving entities.
I just said hospital hospice, assisted living facilities, nursing homes. And there’s no overriding program to help us become that civilization that does take care of our aging. And as you brought out, our disabled citizens.
We can do better. We have to do better.
Steve Grumbine:
00:54:19
I agree. Beautifully said, folks. I strongly, strongly, strongly urge you to get Judy’s book. I strongly urge you to consider this cause, because this cause isn’t just my cause or Judy’s cause. This is your cause as well. Believe me, unless you are Tony Soprano and the lights just go out, this is what you’re going to be dealing with.
And for me, I still am haunted by the death rattle of my mother. The one beautiful thing I got out of it was her final words. I didn’t think she could talk anymore.
And I literally, in a fit, yelled at her, “Mom, please tell me you love me.” And she looked over and her eyes were fluttering. I could only see the whites. And she goes, “I love you, Steven.” And that was the way it ended.
But I strongly recommend you get her book, DisElderly Conduct: The Flawed Business of Assisted Living in Hospice. The author’s name is Judy Karofsky. I’m so grateful to have had you on the show. I’m not gonna lie. I’m probably gonna cry as soon as I hang up.
Judy Karofsky:
00:55:29
And I will tell you that I love you, and I am so grateful that you made this an issue for your audience. Thank you.
Steve Grumbine:
00:55:37
Thank you so much. Folks, with that, my name is Steve Grumbine. I am the host of Macro N Cheese.
I’m also the founder of the Real Progressives nonprofit and we live and die on donations. We’re a very small nonprofit, but we have produced a podcast every Saturday morning for many years now. We’re into 330 episodes. Every single week without fail, we produce these.
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End Credits:
00:57:07
Production, transcripts, graphics, sound engineering, extras, and show notes for Macro N Cheese are done by our volunteer team at Real Progressives, serving in solidarity with the working class since 2015. To become a donor please go to patreon.com/realprogressives, realprogressives.substack.com, or realprogressives.org.
This was a brutally personal episode
so sorry to hear what your mothers and you both went through. A terrible system.