Reply All - #101 Minka

Episode Date: July 13, 2017

A man takes on an impossible job: fixing the place you go before you die. Further Info Bill Thomas's website Bill Thomas on Twitter Tammy Marshall at The New Jewish Home Learn more about your ad choices. Visit podcastchoices.com/adchoices

Hey, it's PJ. Quick note before we start the show. We need your help. Okay, so here's the deal. We will not be here in August. Some of us are working. Some of us are taking much-deserved vacations. And we're trying something that we are really excited for, and this is what it is.

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Yes, I am. What have you got? I have a story for you guys, and this one is about a man named Bill Thomas. He's a doctor. And he has this very wild story. I went up to Ithaca to meet him. That's where he lives. Hey, Bill. How are you? Good to have you here. Yeah, good to see you, too. And he picked me up. He was, he caught an interesting figure, big beard, tie-dye t-shirt, no shoes.

I love it. Are you actually driving barefoot? Yeah. Why not? And he rolled up in his electric car with his piece sign, bumper sticker. His wife Jude was there. I love to drive. He hates to drive.

It shows you my control side. And the reason I have. I'd come up here to meet Bill, is that he's this, like, towering figure in the world of nursing homes. He's known for being this, like, incredibly creative person who's spent his life trying to make nursing homes better. And now he's decided that he wants to destroy them all. Okay. So the first thing I said was, hey, could we go see a local nursing home? I want to see what you see.

And he said, sure, I'm not exactly welcome inside, but we could do that. I'd bend to this one. He jumps in the passenger seat. Jude's driving. I'm in the back. Okay. Stop. Okay.

Here's the thing. We're in the parking lot. Look, you. Jude, look in your thing. We're in the parking lot of a nursing home. and it deserves to go away. And I'm not even going to get you out because if they see you out here with headphones on,

they'll freak out. Oh, really? Oh, yes. Oh, yes. So what we have is a 1960s-era brick building. This lady's looking at us out of the wind. Uh-huh. Oh, yes.

that has not been changed in any substantial way in 50 years. Now, look here. This is an activity. We're looking in, we're driving by. We're looking into the window of this activity room, and it's empty, and there's these, like, cheesy cardboard decorations. It is butterfly time. They have some Memorial Day.

Exactly. Memorial Day. Every holiday has a ritualized cardboard representation. And the reason I bring that up is because it's like that with the food and with everything. Inside this building, nothing is real. What's he so mad about? He means that basically here's a building where everybody inside, like everybody who's living here is really unhappy, but there's all this like pageantry of happiness and joy. People are compelled to inhabit roles that are totally artificial. So if I moved in here tomorrow, the fullness of my personality

would be shaved off. I'm, you know, Dr. Thomas, author of these books, I move in there, and the lowest ranking staff member has total authority over me and can make me do anything. That's true. So we're in the front of this building now. And when people come to live here, they go in through that door. When they die, they go out through the loading duct door in the back. So when a person moves in here, the great likelihood is that they will never leave again. In physics, we have a name for that, black hole. Bill says that this black hole, this is what he's been fighting, his entire life.

You know, he's come up with these ingenious innovations, and every single one of them has failed. And the whole process has turned him into this, like, radical, desperate person. But that's not how he started. You know, back when he first got into the nursing home game, he was a young idealist. It was 1991. He just turned 30. He was done with his medical residency. and he moved to the middle of nowhere, upstate New York.

He was homesteading, like building a house and freezing animals. And the closest place that he could get a job was a nursing home. They were looking for a medical director, and Bill said, how hard could this be? I brought all of my sort of turbo ER new resident Harvard doctor stuff to the nursing home. So I'm running around trying to get everybody cured of everything. And there was this wonderful director of nursing who was like, is just like, come here. Come into my office. Sat me down and just said to me, you're hurting people.

You know, you're being, you're ordering too many tests and you're sending people out for too many, you know, x-rays and settle down. Because he's treating everybody as a case that he can, like, cure. Like, you've got old age. Get over here. Exactly. And Bill, he actually takes this nursing director's advice to settle down. And he starts coming to the nursing home on his days off, like, when there's nothing to do. And he shows up with a notebook, and he says that he would park himself in a room and just, like, take notes of whatever he was seeing. And I remember sitting in what used to be called the solarium, which is really a room with windows in it.

But sitting in the solarium and, you know, 10 a.m. You know, I'll just say, you know, Mr. Smith is sitting in a wheelchair across from me. 10.30. Mr. Smith sitting in a wheelchair across from me, 11 o'clock. This man was like suspended in time just waiting for the next thing. thing to happen. Everywhere the bill looked, he just saw loneliness, helplessness. Like, he'd see a woman just waiting for someone to wheel her to lunch.

And she's sitting there under the hum of fluorescent lights. There's no actual conversation between people. And it's just the noises of a hospital, like the beeping of medical devices. A steady din of people called. calling out sort of instructions and commands to each other, overhead paging. I started to think of the nursing home almost as a strange kind of spaceship that was traveling outside of the earthly biosphere. It was just humans and their machines.

That's all it was. And you could, you know, it was the absence of the sound of insects or birds or wind or rain. I mean, there was no indication, no auditory indication that this place was even on our same planet, really. I felt a powerful sense that even though the people I was working with,

I respected them, they were good at their jobs. The system that I was immersed in was not good for elders or other. living things. Bill thinks all these people living here, they're just so cut off from the world that I come from, the world that's just alive and exciting. And so he comes up with this plan to just shake things up. He applies for a government grant.

And when they ask him what he needs the money for, he says animals. Four dogs, eight cats, 400 birds. No. Yeah. Why 400? Well, it's healthier to have a pair of parakeets in a cage. Yes.

Now you see where this is going. Yes. You can't just have one. It's not fair really to the parakeets. Back then in New York State, you couldn't, you're not allowed to have more than one animal per facility. So that means like one dog or one cat. cat. Well, they don't have like a birdateria. Like, I don't know what the room that, like, they don't have a bird, not like a birdhouse, but like a birdhouse in a zoo bird. An aviary. Sorry I didn't know the word aviary. Oh, it's cool. A bird aterium is good enough for me. And I'm like, so by some, like, by some miracle or some oversight, like, they approve his application. And so he goes out and, you know, orders these animals. And he also puts up an ad. in a local newspaper.

Do you remember what the ad said? I do indeed. It said, if you love plants, animals, and children, this job is for you, apply at Chase Nursing Home. And, of course, I was absolutely certain that they had messed up two ads, one for a nursing home and one for like a, you know, some kind of animal shelter. And so I think perhaps that really stirred my curiosity more than anything. Bill ends up hiring this woman, Jude Myers, as a man.

nurse and their big day arrives. They were waiting outside the nursing home when the bird man shows up with this giant van. He shows up and we're like, great, the birds are here. And at the, you know, we had arranged the cages arrive. And that nice bird man is like, where do you want them? And we're like, what do you mean? Where do we want them? And he's like, I got to drop them off. You know, we can't keep them here. They got to come inside. So we took the beauty shop at the nursing home, and we just let all of the birds loose in the beauty shop. What about the cages? They all arrived flat in flat boxes.

They all had to be assembled. We didn't know this. I don't know why I thought the bird cages would come assembled, but they didn't. So you'd have the, you have to take out, open the box, assemble the bird cage, open the door to. open the door to the beauty room and go in. This is nigh, I'm not kidding. Go in, get two birds, male and female is best. So get two parakeets, get them into the cage, come out.

What happened? And this was one of the very first signs we knew we were on to something. So the beauty, like a lot of nursing homes, the beauty room salon has these glassy doors. And you can see, and, well, the elders started coming and laughing their heads off. Bill and Jude told me that the residents themselves were actually changing. Like Jude described this one man who hadn't spoken for months and how he would sit in the cafeteria near a group of ladies that just love to talk about their birds. And these three women who all had birds would talk day after day of my bird. And I think the man just realized that he was missing out on something really awesome.

And so he was able to articulate to a nurse in the hall one day on the way back from a meal, I want a bird. Do you remember how he articulated it? Verboly he was able to say that. And then he would talk to the bird. There's dozens of stories like that. Bill and Jude were so excited about all these things they were seeing. and they decide to give this whole project and name. They call it the Eden Alternative.

So like in the movie version of this, there's like a stern disciplinarian who's like... Yeah, there's a nurse ratchet. Who's like, hey now. Like, was there that dynamic? He said that people were, of course, some of them were upset about the extra work. He got one call in the middle of the night, a nurse who was like, the dog has taken a shit in the middle of the TV room. I am going to put a chair over it so you can deal with it in the morning. That's messed up.

Well, he says the reason that he didn't have like a full-scale mutiny is because pretty soon it became clear that it wasn't just like fun in games. Hang on one second. He showed me this graph, which I found completely incredible. I have not looked at this in many years. Look at the death rate. that happened at the Eden, where we were doing Eden. So it's dropping precipitously. And I just want to say, as a physician, you never get that.

It's never like that. It's always like, oh, it's a little better. We're doing a little better. This is like a death rate. It's dropping off a cliff. These people just keep on living. And Bill says that they're using less meds, like 30% less medication. Just because of the pets?

Well, you know, Bill says that it's not about the animals per se. It's more about like this thing that they bring to the nursing home, which is just almost randomness and excitement. If our lives lack enough spontaneity, it loses its tang. It loses that sweet edge that comes from talking about that thing that happened that nobody thought was going to happen. and nursing homes, actually the best of them, are extremely good at wiping out spontaneity, crushing it. And so when you see a person at a nursing home station where they're kind of slumped over and everybody's doing their thing, that elder has the potential to be sitting up and looking around.

The reason they're not sitting up and looking around is there's no cause. Bill feels like he's figured out this really big thing. And he ends up, you know, doing this same experiment in a few other nursing homes, has the same results. And suddenly there's all these, like, news crews showing up. True to its name, the Eden alternative floods a nursing home with life. You want to play with her a minute, Rika? It's not like the animals aren't in a certain place.

They're everywhere. We have one dog that knows how they operate the elevator now. Bill and Jude actually end up going on the road with their ideas. And, you know, a lot of times when they go visit a nursing home, it's like beetle mania. Like, people just love them. And these are some of the best years of Bill's life. He and Jude fall in love. They get married.

They have kids. and they're traveling around the country. We were so thrilled. We thought that whoever grasped hold of this concept could take this and take it back to their home and make a difference. And in that first heady year, they said a thousand nursing homes, like more than a thousand,

joined their Eden revolution. And it felt like a surprisingly easy victory until... We would have people say, oh my gosh, we walked in there and if this is what Eden's about, no thinking. You people didn't want to do the down and dirty really make the meaning stick. So they would, you know, they would say like, yeah, we got, uh, we got a Cocker's Banniel, you know, and we like take them from room to room once a day, every day. From 1 p.m. to 2 p.m. Chaos isn't chaos if it's, if it's plant. Yeah, exactly. And so at this point, Bill is like, we're right back where we started. You know, people.

are dying. They don't have to be. People are sad and lonely. They don't have to be. And so he thinks, let's just change the whole nursing home itself. Like, we can stop warehousing people. In 1999, he comes up with this utopic version of what a nursing home could be. And it's basically a place that feels like home. This is a green house. And it's designed to be like a house. There's this video where he's showing like a model of this greenhouse that he built in Mississippi. Wonderful porch, great front yard. You can imagine it in the summertime with the flowers in bloom. It just looks like a suburban home.

There's a garden where people can hang out. You go inside. There's like a hearth that you can sit around. It's like a Brady Bunch house. How many people are living there? So Bill says between 10 to 12 people. That's it. Okay.

So that's the thing that's going to let you actually be human in this house. And he spends 15 years trying to get these kinds of nursing homes built. Some of them are. This is the Mazzusa, which we love. Every home has a Mizzusa, which is a prayer inside. I actually went to see one of them. It's in Westchester, upstate New York. So right away, it doesn't look like a traditional nursing home.

Yeah. There's music. Yeah. And the reason I'd gone is to meet this woman, Louisa. Hi, Louisa. Louisa 78. She had just moved

into the greenhouse like very recently about six months ago. And before that, she told me she was living on her own in Florida. And I was leaving

all by myself. I drove, I cleaned, I washed. I did everything. Myself. I had no... I was just no-em-mo.

And when I got up from the sofa, and I just don't know how one foot went in front of the other one, I fell forward with my head into the wall and snapped my spine. Louisa had surgery after surgery, ended up losing the use of her arms and her legs, and that's how she ended up here. It's been very hard.

I don't know how to sit doing nothing. It hurts. The first couple of months, this was horrible. I used to run to the room and cry. This greenhouse, you know, this special nursing home that Louisa lives in, it's a really nice place for a nursing home. You know, there's a really attentive staff. She has her own room.

But the only thing she really thinks about, she says, is her own home. Like, she just renovated. her kitchen, and she just keeps thinking, like, this is not the place that I was supposed to end up in. Want to hear something strange? Same thing that happened to my mother happened to me. Fell? Okay. Couldn't walk.

Became quite repletive. And I had to find a place to place her. And I really never, never ever in my life did I feel. that something like this would happen to me. What am I going to do? It's happening to me. No choice whatsoever. It's just weird.

It makes me realize that everybody thinks everybody else is going to go to a nursing home. Nobody feels like they're the person. Like, everybody feels like they're always going to be able. They're always going to be fine. Yeah, it's something that you reserve for the other, right? But, you know, the thing about Bill is that he doesn't have that, like, advantage. Like, he's never been able to ignore the reality of existence in a nursing home because Bill and Jude had, back in the 90s, they had two daughters, Haley Jane and Hanna. And both of them were born with this very rare neurological syndrome.

Haley and Hannah were born with something that's given the name Otahara syndrome, where the young people are born with cortical blindness, meaning we can't. see, constant seizures, the inability to move their body. One of the great ironies of life is that I, before Hannah and Haley were born, had already committed to a titanic struggle on behalf, for my part, of people who were very frail and vulnerable, many of whom could not speak or move or talk to you. And then Haley and Hannah were born. And in essence, two frail elders moved into my house. And not children, not changing, not growing in that way. And it was almost as if carmically, it was like, well, let's make sure you don't forget how important this is. When I talked to Bill about the greenhouse, he said, yeah,

It didn't change things the way I wanted it to. But for him and Jude, there is no way out. And so they've said, you know what? We've tried Eden. We've tried the greenhouse. Nothing worked. So screw it. The only way to fix this is by breaking it.

After the break, Bill's last desperate shot. So Bill's grand plan that he's come up with to abolish the nursing home system. it's motivated by his two daughters. A couple years ago, Hannah, his younger daughter, she died from complications and Bill was completely heartbroken. And he says he just poured all his time into thinking about how to make life better for his other daughter, Haley Jane. She lives with him. It's actually she has her own apartment, which when you walk into his home,

there's a door to the right that goes into her place. Hi, Janeers. So I introduce you to Haley Jane. Hello. Hello. Haley Jane's apartment. Uh-huh. And Haley Jane, my friend Shruti.

Hello. Came to visit. Oh, and your hair's still wet. She's 23, looks young. And she was at that moment kind of staring off into space. She was in a brace that was essentially forcing her to stand up. Standing up, Hales, because it helps her circulation. So it's like a, oh, I see, so it's not a chair, it's a stand.

Yeah, they call a standard. Most kids with Otahara die very young, like before they're even two years old. The fact that Haley Jane is in her early 20s is extraordinary. And Bill thinks that part of the reason might be because of the fact that they've been able to keep her at home out of institutions. You know, they take her to the lake house on the weekends. He plays her guitar. They've been able to give her, like, build this custom life for her to keep her comfortable. And Bill worries that if he and Jude are what's making this work, then what happens when they're gone?

You know, after Hannah's death, I wonder if you guys were even more worried about what would happen to Haley. Like, if something happened to you guys, do you feel like, oh? Shruthi, it terrifies me so much. I cannot speak of it. And I will speak of a lot of things, but if something happens to Jude and I, that's not a road. I'm ready to go down because, you know, we, Jude and I want to make sure somebody like Haley has a choice or has options and isn't condemned to an institution. and that gives the Minka a great urgency for us. So the Minka.

Okay. What's the Minka? So Bill's big, final idea, the Minka, which is essentially a house. It's a small, special house that Bill has designed for one person to live in if they can't live in their own home. So say they've had a fall. It's actually very expensive to take a regular home and make it accessible. You have to add ramps. You have to change the entire bathroom.

So the idea is here's a tiny accessible house. Here, let me show you a blueprint. It looks like a tiny, an IKEA house would look like. Totally. I was going to say it looks like like a Swedish, you'd be out on like the grounds of a beautiful, like, modernist space. And then you just like find this little. It's like bigger than a big sauna. Yeah, exactly.

And Bill took me through, you know, his. his plan. So this is, this house is for Haley Jane. So there's a small ramp that's like built into the earth here. And then this is on a slab. She comes into the house, kind of a sitting area, small kitchen, really, honestly, what many people would recognize as a studio apartment. But instead of it being a studio apartment, it's your house. And you can put it, put it in where you want. and live where you want. So Bill's basically thinking, this is for Haley Jane,

but it could be customized for anybody, like say someone who's older or needs an accessible space, and they can just plop it, say, I don't know, in their backyard. I'm, I'm, my question is, I think about my relatives who are reaching the age

at which they need to have round-the-clock care. And this to me just feels like being isolated in a tiny little hut in your backyard. What is the, draw for the person who would be living there? The idea is basically you can have your own small space and also just live right by your family. You know, when he actually was telling me about the minka, I thought about Louisa, the woman that I met in the greenhouse, the nursing home. Because she had mentioned to me that when she first had her big fall and was in a wheelchair, her daughter wanted to put her in her house.

And Louisa didn't want to go there, even though she's close to her daughter, because she didn't want to be a burden. And I feel like that's a completely understandable feeling. And the alternative would have been like if the Minka is a thing, like you can create this little space for a person where they can live with their family but not be in that person's house. It's sort of like the apartment above the garage, but wheelchair accessible. Yeah, exactly. But in order for this whole plan to work, the Minka, you know, Bill has to figure out how to mass produce this, like, customizable thing. And the way he's hit upon to do this is by 3D printing the Minkas. That makes it sound like it's made of very cheap polymer that will fall over if you touch it lightly.

It's not. I actually saw it being printed. So what pieces is it printing right now? We're printing out. Looks like roof rib pieces. So the way it works is there's just regular old construction plywood, all this insulation foam. and he went online and bought like $15,000 worth of 3D printing equipment, which takes the plywood and foam and like cuts his blueprint designs into it. And then does it like assemble like Lincoln logs?

Yeah. But the thing that really stumped me about this whole plan of his is the cost of it. Bill said that the minka to buy the materials, to print it, and to have it installed, it would cost $75,000. That doesn't include the cost of home care, which I assumed would be very expensive. So the whole thing seemed pretty prohibitive. And I just wanted to understand, like, who could possibly afford to do this. And so I called Tammy Marshall, who is the chief experience office. officer at the New Jewish Home, which is the greenhouse-style nursing home where Louisa lives.

You obviously deal with people every day who've had to leave their homes for whatever reason. Every hour. Every hour. And the question is, like, for who would this Minka have been a good alternative? Well, there isn't anybody here that needed to be here. I could literally close this. I mean, there's people that don't belong here. you know, they've been here.

All that we're doing here can be done in your home. What? Exactly. I mean, here is the person who runs a nursing home, and she's saying, you know what? Everybody could be in their home, a minka, whatever. Like, nobody has to be here. And it's so crazy to hear that because I think I always assumed that nursing homes existed because they're cheaper or more efficient.

and what I've learned is that they're not. They're actually very, very expensive. They're far more expensive than home care. Just think about this. I mean, when you're in a nursing home, the average certified nurse assistant who works in the institution. This is always what just blows my mind. They're paid $15 to $17 an hour.

It's not a huge wage and they're doing good work. If I'm a home care aide, a home health aide, I'm making $10 to $11 an hour. Really? Yes. They make almost $1. nothing and they're schlepping all over. They're in people's homes. But their wages are gouged compared to the person who works in the institution. But who's profiting from that,

my dear? But wait, so you're saying, so why don't more people do home care then? Is it because Exactly. Why have we stumbled upon such an incredibly broken system? And that is the one we've chosen. So nursing homes take up a huge chunk of Medicaid costs. So, in New York State, your average nursing home bed costs $135,000 a year. And, you know, that feeds a lot of different types of companies. There's like pharmaceutical companies, food companies. You know, it's just a giant system. The nursing home industrial complex.

That's exactly what people called it. I didn't want to say it because it sounds a bit... Crazy? Conspiratory. Well, it's not a conspiracy to be like... We've built up a lot of systems. Maybe they weren't a good idea, but now they have stakeholders. It's like a bunch of people who are like, you're telling me that I need to shutter my

company so that you can build a bunch of houses in your backyard. Like, I don't think so. Yeah, you have like against all of this. You have one bill. One bill. With his crappy 3D printer. The guy with the parakeets, like he's going to do it. Like, no.

Yeah. I mean, you know, but Bill is actually pretty optimistic. Can't, like, do you think the nursing home system? Like, do you really think it can be broken? Like, do you really think you can beat them? Yes. And I'll tell you why. Go get the data that shows you the number of nursing homes in America.

I know the number. I think it's like some 15,000 something. Yeah. It used to be 19,000. Oh. Yeah. 4,000 have already closed. This is actually true.

You know, it's not happening quickly, but every year more people are finding a way to get out of the, the system. And the reason I believe that my abolitionist dream will come to pass is nobody's going to go on a crash program to rebuild America's nursing homes. So we're at the end of an era, and it's our job to figure out what comes next. Power up. Here we go. Bill thinks that his Minka is going to be the first of many better options. But this minka, he calls it minka number one. Down she goes.

It's for Haley Jane. And right now we're getting ready to put in the last panel of this minka to make it complete. And the idea is she's going to be there. She'll have full-time nursing care. And no matter what happens to Bill and Jude, it'll be hers. We're ready. One, two, three. Please go Kaching.

Yes! Shrithi Pinnamini is Rapaiol's senior reporter. Repai is hosted by me, PJ Vote, and Alex Goldman. The show is produced this week by Shruthi Pinminani, Fia Bannon, Damiano Marquetti, and Austin Mitchell. Our editors, Tim Howard, more editorial help this week from Jorge Just and Pat Walters. Production assistance from Shrina Aung. We were mixed by Rick Kwan and Matthew Bull. Special thanks this week to Jules Beal, Cheryl Zimmerman, David Grabrowski, and Zach Thomas.

Also, Shruti says if you want to read more about aging and the medical system, she really loved Atoll Gwanda's book Being Mortal. Go check it out. Matt Lieber is a book you read in one sitting. Reply All is now available on Spotify. Go check us out there. You can also listen to the show on Google Play, Apple Podcasts, wherever you listen. Thanks for listening.

We'll see you soon. So we figured out you use the left pedal to make things appear. And the right pedal down here is to transport. So I say just play some keys and see where it takes us. Where'd you go? Oh hey. I've been here before. The sky fills with glowing bees. If you have a jar or something, you can...

Oh, thanks. You can make music by popping one in. Here, here grab another one. Let's do five. Okay, now take the lid off. If we just had more jars, we could take some back with us. Where are you pulling these from?