Evanthia Bromiley, welcome to Writer's Voice.

Thank you so much for having me.

This was such a beautiful book, a beautiful book that often talks about ugly things like poverty and how hard it is to live in this country.

If you're poor, if you're a woman, if you're a single mother, all these things are very difficult, but it's explored with such intimacy and lyricism that it was such a joy to read.

So I just want to say that right off the bat.

Well, thank you very much.

It was important to me to have shots of joy throughout it as well.

So I'd like to actually start out by giving our listeners a sense of how the book is written.

So I'd like you to read a chapter that begins with Jude, Jude is the character of the mother in this novel, and you know, we'll explain what it's about after you read it.

Evan, get over here where I can see you.

Virginia looks up at me and suddenly I am a child again, a child inside another morning, another town waiting for another bus.

In that child's face my own looks up at my mother.

I'm cold, Mama.

My mother unzips her coat and I place my hands inside her jacket.

I remember the feel of that now, my fingers tracking my mother's ribcage, two cold clasped wings.

Where will we go, Mama?

And I remember her face, her turning away.

No, really, where?

She think you stole her jewelry.

I know she think that.

I tell her why I want those ugly ass earrings.

You done told her that?

Well, in my head I did.

If you ever see Jenny P return, tell her.

The Poetry of Poverty The three cleaning ladies set their buckets in a row and jut their hips, resting slack-legged.

The boy with the headphones cracks two knuckles and nestles the headphones more tightly over his ears.

Evan Woods, I say.

And he places his small hand on the almost opaque plastic, so I can see it, not the child himself, but the small shadow of the open hand.

And Virginia looks thoughtfully up from our side and then throws her own hand up to meet her brothers.

Thwap.

And then, in one silent rushing moment, my children turn the slaps into a game, one twin throwing a hand up to make themselves visible, and the other seeking it on the other side of the wall, back and forth, the mystery about where the hand will land and how fast the other will find, follow, and join it, and I become breathless.

All of us do, the housekeepers and the air traffic controllers and the nurses, all of us watch as the game speeds up, as my children go faster and faster, finding each other over and over again, the sound of their hands, thwap thwap thwap.

I love you, Virginia shouts, I love you.

And I know she means all of us, all of us standing there.

So lovely.

So now tell us about Jude and her two children, where they are and why.

So Jude and her two children in this scene are at a bus stop, and that's the extraneous voices you hear in the middle, and also the graffiti.

And they have been evicted from their home, and so they're waiting at a bus stop on their way to social services.

And at the bus stop, there's this opaque wall of plastic.

And I actually think it's really fascinating that you chose that scene for me to read because it's a little bit of a definitive image in the book.

That idea of like how Virginia and Evan can't really see each other quite, but they're always able to find each other.

And I do think that this book is a lot about how we might see people, and how we might not quite be able to find exactly who they are.

And one other interesting thing about that scene is this is something I really saw in Mexico City in an airport, I saw these two little kids, and they were playing on either side of an opaque glass of wall of glass, and they were playing that game and they were moving so quickly, and it just really, it stuck in my mind.

So of course, I'm going to ask you to elaborate on that idea that you spoke about, of how it can be hard to see each other, and yet people who love each other find each other.

Although you said it can be hard to find each other too, but these two children do find each other.

And they really anchor the book.

So tell us about them and why you centered their voices.

And tell us a little bit about Jude herself, their mother.

So Evan and Virginia are twins, nine-year-old twins, and I centered their voices along with Jude's because the book is really a triptych.

It's three voices in a family over the course of three days of an eviction.

So it's highly compacted, and I wanted very much to have the children's voices there because of their innocence, because of their ability to use imagination as a resource, and because of the fact that I did feel that these two characters, these young people, were very well loved despite growing up in very stark, desperate circumstances.

Jude loves them very strongly, and so it was important for me to show that, to show that idea of, and when I say find each other, I almost mean like see each other properly.

It's a book, to me, when I was writing it, it was a book about, I wanted to make sure that there were no cliches in sight.

It was really important to me that all the characters were very well seen by one another eventually.

And the other thing that I really wanted was I wanted texture, and so Virginia's voice is full of velocity in my mind when I was writing her.

She felt very embodied, and she felt very active.

She's holding a lot inside the body, and then Evan is kind of the daydreamer of the novel, and so his sections, to me, tend to be more lyric.

There's a lot more flights of imagination.

He's kind of living in this liminal space.

And then Jude is the harsh reality, I think, of what a lot of women in this kind of like our most vulnerable populations face and unseen.

Yes, vulnerable.

So this family has not only been evicted, but Jude is pregnant, and there is no man in sight, at least for much of the book.

Talk about that vulnerability and, you know, what in your own experience led you to write about characters like this?

I see the family as vulnerable when it comes to systems.

I think that they're all kind of slamming up against the ceiling of the American dream that doesn't really exist.

And in my own experience, I did not grow up homeless or endangered, but I have worked in the public systems, the public school systems for 19 years.

And my job was really unique in that I worked with families for three years at a time and often with siblings.

And I see a lot of mothers just fighting to survive on a daily basis.

And it is a struggle that's pretty unrecorded.

And the unhazardness of our children seems to me pretty unrecorded.

I wanted to write about those kids and their experience, and I wanted to write about their resilience.

Yes.

And talking about that resilience, Evan, the dreamer, and Virginia, who is, as you say, embodied in energy, motion, they embody different survival strategies, really.

So how did you develop their twin but contrasting identities in this way?

Oh, Francesca, I think a lot of the way I write, I have this terrible memory.

So I was kind of looking over my notebooks from back when I was in process with this book this morning.

But I think a lot of it in this book was musical for me.

It was listening for the voices of the characters.

And so I knew that there needed to be a kind of rub between them, a texture between them.

They needed to be highly differentiated for the music to work.

And so one of the things, because I was looking through my notes this morning, I was really concerned with the white space between them, the white space between the characters, the three different voices.

When I had written this on white space, I want to create a surface you can move across, a physical surface.

The white spaces are for leaps or falling.

They're there for the reader to fly over or fall into.

They're all the things the language can't hold.

And I just thought that was fascinating when I looked back at it this morning, because I had no recollection of that part of the process, but that musical piece was really important to me.

Could you say more about that, what that experience of the white space is for the reader?

Yeah, this idea for the reader to fly over or fall into.

I have another section in here that I read when I was getting some feedback from some other writers on this novel, and the feedback was about the tumbling sentences.

And so I think when you have white space in a novel, it's a little bit visually artistic too.

But when you have negative space in the painting, it throws into contrast what is there.

And also, I think now that the book is done, I don't think I thought about this in process, but I think now that the book is done, it helped me to avoid sentimentality, or my hope is that it avoided sentimentality.

Because if you carve away what language can't hold, it throws into stark contrast what is there.

Could you give an example of that?

Sure.

It might take me a minute to find it, is it okay?

Absolutely.

Yeah.

Okay.

So, on page, it's 222.

I have a section of Jude, and she's at this point in the novel, she's inside the emergency room in kind of a holding pattern.

There's a stasis.

It's the middle of the night.

It's very crowded.

This is during COVID, and there just wasn't enough room, and her labor has kind of stalled the way women's labors often stall when you arrive at a hospital.

And she's met this boy, and they've formed this connection.

He's a narcotics user, but they've formed this really genuine connection, and it's one that she desperately needs in this moment, and so does he.

So it's two strangers coming together, and she's looking at him, and he looks up at her over this little paper airplane that he's made, and her mind shapes the word junkie, and he says, Simon, that's my name.

This boy has eyes like the floor of a forest.

He is a beautiful boy, too delicate for this world.

He pulls his sleeves down, and then there's white space, and it says, how do you take care of another person at all?

And then the chapter cuts, and it's Virginia's voice, and there's only one line on that page, and it says, it's all right, Evan, look, everything here finds a way to grow through what is broken.

Yes, that's interesting that you chose that, because I have that quote in my questions, actually.

I think that embodies so much of the book, the resilience that you talk about, the connection between people, the love that they have, and thank you for that, because I think that does make it very clear what you're talking about.

And say a little bit more about struggling as a writer with, what was the word that you used?

What's that word when it's trite?

Oh, sentimentality.

Yes, yes, absolutely, absolutely.

Well, as a writer, it's always been very important to me not to veer into sentimentality, but that is also very important to me, and these are contrasting impulses to like kind of bleed on the page.

Like I want, I do not want to avoid sentimentality at the cost of having no emotion.

It is important to me, and it's my best hope that the reader feels something reading.

I think when we feel, when I feel something reading great pieces of literature or watching a great piece of art, that's the point of the whole thing.

So to avoid sentimentality in this novel, I think that the white space was there to help me, and I think that another thing that was there was the starkness of the prose at times.

This is not a completely lyric book.

There are many sentences that are very straightforward and very stark in that I think speak to the truthfulness of the experience that these characters are going through.

Also that speak to the quality of the land where I live in the southwest.

It's kind of a rough, raw place to abide, and I think that that is in the language.

And increasingly unsurvivable for homeless people.

Absolutely.

It's so hot here right now, and I was watching a man yesterday as I was driving, and he just was sitting on the sidewalk, and I couldn't even fathom what that feels like, to sit on that sidewalk in this kind of heat, and with no reprieve and no rain.

We haven't had rain since June.

So I feel, yeah, yeah, I feel that the climate is changing so rapidly.

So thank you for bringing that up.

Yeah.

But I want to go back to the lyricism, because in what you read, there is a phrase, a poetry of poverty, which is a jarring kind of contrapuntal positioning.

Say more about that.

I think I am drawn to something of the quotidian in the blue-collar life, and I think I'm a blue-collar writer.

Like, I show up at the desk every day, and I make sure I do, even if it's not working, even if it feels like a drag to get here.

So when I say the poetry of poverty, there's this idea that if we attend to the quotidian, and I think this is true, actually, of any socioeconomic class, if we attend to the quotidian and we pay attention to the everyday poetry of our lives, like the everyday beauty there, that's really all there is for us.

It's a very Buddhist concept, but that is what's there, and so to attend to it in language was important to me.

And very much like the other one, we just spoke about how things grow through what is broken.

Yeah.

I think that that's probably a musical motif going on in this book.

I mean, this book is about two children that are growing against all odds, and for them imagination is a resource.

Exactly.

So even the fetus has a voice.

Kind of, kind of.

Through Evan.

I see.

Yes.

Evan, the boy that we talked about earlier, is continually referencing the baby, and he speaks to the baby directly with you, with the second person.

And so that was a little fun game that I was doing with structure in this book.

When I wrote this book, it was continually remaking itself structurally, and what I ended up coming to was this idea of a crown of sonnets, which ties into the title.

And a crown of sonnets is a gift to the beloved.

And it's seven interlocking pieces, kind of like this book.

The reader does not need to know this, but this is a game I was playing with myself.

And the you is eventually realized, I won't say too much, because I think it's a spoiler at the end what happens, but yes, that's what you mean when you say, yeah, the baby has a voice also.

And speaking of crown, that also relates to a baby crowning.

That's what happens at birth.

And also Jude is a kind of a queen in a way, in a good sense, you know, the queen mother.

So I just wondered if all those meanings were part of that title.

Absolutely.

Absolutely.

Especially the crowning of the birth, this idea that this is in the end, a hopeful story.

One of my favorite novels that I haven't thought about or talked about in a while is To the Wedding by Jon Berger.

And what I love about that book is it's a very poignant story about a girl who has HIV.

However, the book itself is structured around the journey to her wedding, despite the fact in that day and age, when she was getting married, everyone knew she would die.

But it's a celebratory book too.

And the way he did that is really beautiful.

And I wonder if this book is a little bit in conversation with that kind of idea.

So let's talk a little bit about some of the other people.

There's such telling vignettes in the novel.

There is one of them, well, these are not the only working class characters.

I mean, the whole novel is filled with waitresses, veterans, bus riders.

And there's one scene on a bus to a shelter.

I think it's to a shelter, right?

There's a homeless man who is, quote, yammering to himself, and I think we all got that picture right away.

I mean, any reader would get that.

And Jude says that she wanted her children to see, that the world's sadness is hard to understand.

She wants them to try.

What is she saying there?

What she's saying is that she wants them to understand that despite the fact that their lives have moments of difficulty, and in these three days, multitudes of difficulty, that I think what's happening there is she's aware that others have it far worse, and that it's important to her that her children understand that too.

As well as the fact, I think there's another line in that section that I remember, because sometimes you just remember things that come to you in the process, and it was someone asked the bus driver why they don't kick the man off the bus.

And he says, the public bus system is a democratic institution.

I've heard a librarian say that to someone once.

And some of this book is overheard, like, I think this book plays a lot between like, am I finding something or am I making something?

And in that case, I'm finding something.

Like the two kids in the airport to I'm finding that snippet of dialogue, like the public library is a democratic institution, I'm not going to make this man leave.

And now in a time when our democratic institutions, including libraries, and even I'm sure public buses aren't going to be on the chopping block are under such threat.

What about this book can help us think about how to create resilience in our communities?

You know, I think any piece of art can't tread too heavily on doctrine or like trying to make people feel one way or another, I wouldn't want to assume that.

But I think that if people can see other people, if you can really see the people around you, and if you might pay attention in the moment to moment rush of your days, we all might have a little more kindness, a little more empathy for one another, especially now.

Empathy is needed now.

That is so true.

So finally, having written such a powerful book, what stories might you be thinking about exploring next?

I have a few things in process.

They're not really formed enough to talk about just yet.

I'm afraid if I let the words fly out of my mouth, I'll kill something because it's a tender process in the beginning.

I'm gathering the images, kind of like stacks of photos, but I know that I'm very interested in the intimate stories.

I know I'm interested in writing at the intersection of women and children and the day-to-day of our lives that often goes unremarked upon.

Well, I look forward to reading what you've written next and talking with you about it.

Thank you so much for talking with us here.

This has just been a wonderful conversation.

Oh, thank you so, so much, Francesca, for having me.

It was great.

I appreciate it.

Thank you.

Thank you.

Thank you.

Judy Karofsky, welcome to Writer's Voice.

Francesca, thanks for asking me to share the important message of this book.

So this book is rooted in your experience in trying to find safe, dignified care for your mother.

Can you tell us about the turning point when you realized you actually needed to write a book about it?

Sure.

My mom, Francesca, was lively, funny in her independent days and an independent living after she moved from Florida to be near me.

She was always the star of whatever program went on in the evening.

She was Marilyn Monroe when I needed a Marilyn Monroe.

She was a stand-up comic by abvocation.

She had her jokes that she could tell very well with a few notes.

She did her routine both in Florida, when she was initially alone after my dad died, and then once she moved to Madison, she would go to a local piano bar.

Many Thursday nights, I would accompany her, of course.

At intermission, my mom would get up on a bar stool and say, ìQuiet down, everyone.î She had wonderful, long, funny stories to tell.

I wrote about the funny things that happened to us because we were buddies when she was in independent living.

We went to the opera together.

We traveled to see her brother together on the East Coast.

We went shopping, of course, to every thrift shop within 100 miles.

But once she had what was finally diagnosed as a stroke, she needed additional help.

She could not return to her independent living facility.

And the social workers in the hospital where she was undergoing stroke rehab let me know that she would be leaving that hospital, and they meant soon.

And they wanted me to select her next place to be.

So unprepared as I was, I barely knew what the term referred to, although I have learned since.

My mother moved from independent living to something called assisted living.

How does assisted living differ from independent living?

How does it differ from independent living?

And then you're going to ask me, how does it differ from nursing?

Assisted living is intended to house, not care for as we'll learn, but house people who require help with activities of daily living, ADL.

They might need help eating, dressing, walking, going to the bathroom, toileting, but they don't require the full 24-hour care that we came to know and expect in nursing homes.

So nursing homes are regulated by the federal government.

There are rules about how the meal should be and how the activity should be and how the care should be provided.

In assisted living, which is relatively new, once that happened, there was a place for people like my mother who did not need round-the-clock care of a nursing home.

And assisted living was intended to be a home, emphasis on home, where our residents could come and go, could lock their doors, a very important distinction that does not happen in nursing homes, and receive a minimum amount of care.

In Wisconsin, where we live, the maximum amount of nursing care that can happen, can be provided within each week, is only three hours.

And some assisted livings do not even have a nurse on board, they travel itinerant, visit once in a while.

So assisted living is not intended to be a health facility.

It's a home.

It's a place where people live who need only a certain amount of care.

You have described cycling your mother through six facilities.

Francesca unintended.

When she was in the hospital and had been diagnosed with a stroke and was in a stroke rehab program where they taught her how to eat and how to walk again and how to speak again.

As I said, they came to me and said she needed to be in a out of the hospital for sure and she could not go back to her independent home.

So I had no time to research alternate facilities, even in my city.

I'm an only child.

I was responsible for my mom.

I claimed the responsibility.

The easiest move was within her CCRC, Continuing Care Retirement Community.

Those are the facilities which often ask you to put down some enormous amount, like $300,000.

Oh, you could triple that, I bet.

To move into some independent living facilities with the future intended to be more care, more care, and then more care, so that if when it becomes necessary for either your loved one or for yourself, there will be an assisted living option if you need it, a memory care option if you need it, a nursing home option.

These are talking about the cost.

So yeah, actually I was giving you $300,000.

That was what it was about 15 years ago.

So it's about triple that now, but people are still paying a high monthly rent on these.

They are.

So yes, that is where my mom was, but this is what I learned while she was there and had already made the transition to the assisted living.

She did not have to remain in the assisted living of that continuing care retirement community.

We were free to move her.

And ultimately we did because there was such a drop off in her care, her food, the food was prepared by a different kitchen than the one she was used to when she was part of the independent living community.

And various things happened that made my mom unhappy with her new existence on the same block, the same large city block, but not within the same building and not with the same caregivers and certainly not in the same program.

Independent living, which I don't really diagnose in the book, although I discuss it because she had her time there.

But the book, as we've been saying so far, is the trail that my mom followed as she moved through six different, uniquely different facilities.

But Francesca, it's also, it's an analysis of an industry.

That's really what we're talking about today.

What were some of the common failures you encountered across all of these six facilities?

Low staffing.

The alternative to not having enough staff people on a daily basis was to employ temporary staff people who would show up no matter how big or how small the facility was.

And she was a couple that were quite small.

People would come from an agency who didn't know my mom or the other residents or their meds or their med schedule.

That was discouraging.

And the staff changed all the time.

Even the staff that was part of the employed staff and the directors and the chefs.

And there was an issue always with the quality of the food.

Once my mother left independent living and moved into that situation where she was having a grilled cheese sandwich every day, she was doing that to protect herself because the quality of the food dropped off so significantly.

And we had a religious issue.

Because my mother, who was brought up Jewish, Orthodox actually, would eat a lot of things that are no longer considered kosher, not kosher.

But she would not eat pork or pork products.

When those appeared on the menu, she always would ask for a substitute.

And the substitute was a grilled cheese sandwich over and over.

So there were food issues.

There were care issues.

And we haven't mentioned this yet, Francesca, but after a certain number of months, my mother, who had suffered a stroke, was coming back from the stroke, was delightful once again, looked like she was in good shape, someone said that, for her age, fell and broke her hip.

A common story.

After that, she was in a wheelchair always.

She never did walk again on her own.

And a few months after that, the idea of signing her up for hospice was presented to us.

So hospice entered the picture.

And the hospice program for people who are in an assisted living facility, as my mom was, is that they visit once a week, they'll do showers, they will appear if there's an issue, if there had been a sickness or a fall, especially in the night.

They take control of the meds, and this is what's most important.

They provide everything, the wheelchair, the meds, the supplies, the incontinent supplies.

So hospice is a promise.

Hospice is a gift that is intended to follow along their patients until death.

That was not the case with my mother, because my mother outlived the hospice timing.

Hospice is reimbursed, every hospice agency is reimbursed through Medicare.

Medicare calls the shots for the hospice programs.

So when they examined my mom time after time, and finally said, they literally said to me, she is not dying soon enough.

She's not going to die within six months.

At that time, Francesca, she was 99 and a half.

How could you say she's not going to die within six months?

And in fact, as her story wore out, she did die within that six-month period, the hospice did reappear at the very, very end of her life, the last, I think, three or four weeks.

But the ending was not perfect.

The ending did not meet the promise of hospice.

So people need to, I hope, become aware that assisted living is a business.

In fact, it's an industry.

In fact, there are incursions of private equity, buying up groups of assisted living facilities from one side of the country to the next.

And I think in the beginning we were, speaking of the costs, the costs will just keep going up, because they're charging people, unfortunately, who can pay, who are willing to pay.

So I want to zero in a little bit about this, you know, the big corporations being involved in private equity.

But first, just give us a snapshot picture of, you know, the assisted living situation as it is today.

You know, how many people are going into this system?

At the present time, we have 32,000 assisted living facilities in this country.

We have about a million point two people who are residents of assisted living.

It was not that way a few years ago.

A few years ago, there were more nursing homes than assisted living.

In my county, that's what the balance was.

Many more nursing homes than assisted living.

There's been a drop off in nursing homes because they rely on Medicaid, different program, but Medicaid.

And we know there's been cutbacks with Medicaid.

We know there was this big, beautiful awful bill, and there will be more.

And nursing homes have shut down.

The sixth facility that my mother, which she was a resident, had already announced that they were shutting down their nursing home when she became a resident of it.

So at that time, the only choice in that facility, and she was so close to death, was the assisted living portion.

The numbers of facilities, one or the other, that we're going to need, will blossom in the next several years.

We are facing the entrance of the baby boomers into the need for elder care.

Nursing home, assisted living, starting with independent.

I'm two years older than the baby boom generation.

My oldest daughter is two years younger, so we sandwich it.

So whether we are in these facilities, we know people in the facilities, we're caring for people in these facilities, or we will soon be making decisions about entrance to these facilities, we have to pay attention to this fact.

At this time, there are no federal regulations, no oversight on assisted living.

It's just a business.

It's a real estate play.

It's an industry that is profiteering on people like Judy Korofsky, who at one point had to make a quick decision about which assisted living should my mother go to tomorrow because this hospital doesn't intend to keep her beyond this stroke rehab 10 days.

And I made the most expedient decision.

I said, well, she's in this place and we'll have her move literally down the hill to the assisted living.

People don't have the time and they're not likely to research assisted living because the decision is crisis driven.

And that's what makes the profiteering possible.

They're making money, those who are building, developing, controlling assisted living facilities are making money on people who are not making careful decisions at that moment.

So I want to zero in a little bit about this, you know, the big corporations being involved in private equity.

But first, just give us a snapshot picture of, you know, the assisted living situation as it is today.

You know, how many people are going into this system?

And this has been happening actually even since the beginning of the history of assisted living.

And the person who did invent the species was somebody named Karen Brown Wilson.

Her first facility was in Oregon, and her mom had had a stroke.

Her mom was in a nursing home, turned to her daughter and said, get me out of here.

And she and her husband, Karen Brown Wilson, and her husband sat down at their kitchen table and came up with a plan for a home that worked.

It was called Park Place.

It was in Oregon.

There were, I think, 124 residents, 100 employees.

Francesca, over time, Karen Brown Wilson owned 84 of them in 18 different states because in time she needed investors.

And that's what happened.

Once investors are on board, unfortunately, the decision-making changes.

It's no longer close by.

It's remote, remote decision-making, remote decision-making above the bottom line.

The product becomes more important than the patient.

She knew that without the proper oversight, guidelines, regulations, it's a race to the bottom.

And I'll cite for you and for the listeners one terrible incident that happened with this summer in Fall River, Mass., where an assisted living, there was a tragic fire in an assisted living facility.

And unfortunately, 10 people died, 10 residents died.

Everything that we could have worried about, everything that some oversight or regulations might have prevented was present on that site.

A front door that the fire people could not enter, window air conditioners so they could not pull people out.

Of course, people are in wheelchairs and stretchers.

There probably was cigarette paraphernalia, smoking paraphernalia, and oxygen in the same room.

All the things that could, should have been watched, inspected, and inspected again, were probably present in that situation, and we need to guard against that.

Now, let's come back to your mom.

You share the shocking story of your mother being sexually assaulted in one of these facilities.

Talk about what happened and how did the facility and the system respond or fail to respond.

My mom, alert as she was, always was, always, Francesca, pinned a flower or a bow to her hair.

She was always conscious and knew how well she looked, how good she looked, and she wanted to look good.

One night, I saw that she had two rather large flowers in her hair.

My clue.

I asked her why, and she told me about the male attendant, CNA, as most of them are, certified nursing assistants, had fondled her breasts.

She told me that.

She had never told me any story like that, and again, she was credible, and she could describe to me, show me what had happened, and she said, in order to make light of it, he pinned another bow in her hair.

That was the clue.

I was just beyond being able to discuss this with anybody in the facility until I made a call at one of my daughter's suggestions, my daughter, an attorney daughter, who said, call the Rape Crisis Center if there hadn't been a rape.

They suggested talking to a social worker, which we did.

Social worker finally convinced my mom we could have a meeting.

We had a meeting in the facility with the director and the nurse, and in answer to your question, I don't think anything ever happened.

That person was kept from my mother's room, and within about six weeks he was fired, but I don't believe it was for that reason.

I think something else happened, and that when the nurse told me that he would no longer be in the facility, she said to me, don't ask any questions.

That's how it was dealt with.

So all of that points to a really lax reporting system in my state, and I'm prepared to say in most states the reporting doesn't happen, and if it does, there's no recourse.

There might be slight fines against certain facilities, but the fines are never significant enough to shut a building down or keep people out of the business.

Sexual assault, sexual abuse is not uncommon, neither is physical abuse.

You write about unsanitary conditions, the indifference of staff, although that may also be an issue of having enough staff.

Say more about how common these problems are, and why do you think they remain so invisible to most of us on the outside?

Francesca, I think people really don't want to talk about that murky future.

I don't, and I'm going to be in it, close to it.

We don't.

So we don't tend to talk about it beforehand.

And we hope, and it's a good hope, that we will be relieved of all of those kinds of concerns.

A big issue is the staffing, that the staff are all big-hearted, caring individuals.

They have families of their own, they have children of their own, they come to work, they want to be helpful, but they're under-trained, underpaid, there's not enough guidance for them, not significant enough management for them.

And if we focus on the staffing part of this problem, let's also acknowledge that many, most, are people new to this country, immigrants.

So now we're caught up in that other big problem that we're facing as a nation right now, immigration, deportation.

There aren't people who are comfortable enough in their position to even report the kinds of problems that go on on a daily basis.

What do you think the impact of these deportations, these mass deportations, is going to have on this problem?

I assume many, many people who work in these facilities are in fact immigrants, and a certain portion of them are probably here without documentation.

And afraid to be perceived as stepping out of line.

The people above them do not want to rattle their program.

Don't rattle, I want to say their cages, do not do that.

So it's exploitation.

It's allowing people to come in, and we need them, and we want them, for all kinds of reasons.

But unfortunately, they work in positions that really don't have much of a future.

And very, very few believe that they will ultimately become licensed nurses, directors of facilities.

It does happen.

I know about a CNA who did move up and become a director in a facility in time.

But it's so unlikely.

So we're just not doing the best for the people who we need the most.

In fact, you argue that ageism underpins many of these abuses, the limited choices, neglect.

Can you expand a little bit about how cultural assumptions about aging...

Patting my mother on the head and calling her deary and sweetheart, and she knew.

She could say to me, she's paying attention to me now, but as soon as you leave, she will ignore me.

The food issue, one day I said to the director of my mother's first facility, this can't be healthy.

Every Saturday, especially in the fall, I guess, they were serving a football menu for lunch.

Well, that's quite cute, but it means in my state, a brat, a pork brat, hot dogs, and chips.

And his response was, at their age, it really doesn't make a difference.

At their age, it doesn't make a difference.

The lack of follow-through on activities.

My mother loved when the symphony rehearsed in her building, the local symphony, or when I took her to an opera.

She was prepared to have the cultural experience that she was used to.

And the activities that they do mention, let me say, for the most part, don't even occur.

There was calendars in all of the facilities, nightly calendars, of what was going to go on so that if you walked in, you were making a decision about that facility, you would say, this is a very interesting place to be.

There are lectures, there are walks, there are visits to the zoo, but those things don't happen.

But they're on a whiteboard or on a chart in the lobby in case a state investigator ever comes in.

I don't know why they were posted.

So what would it look like to design elder care around dignity and agency?

Dignity and health care would be the goals.

Dignity and health care, safety.

The pandemic has changed the configuration needs of all of these facilities.

We will forever have to have isolation spaces, the ability to isolate people, not keep their relatives out, their caregivers out, have to figure that out, can be done.

I know about a place in Wisconsin that was built so close to the pandemic.

They had advanced HVAC ventilation system.

And actually, they did not have to keep the relatives, the visitors, the caregivers out.

How wonderful is that?

Only a matter of timing, but good for them.

And that's the kind of design we will have to incorporate.

There are a lot of changes that could be made, thinking outside of the box, so we don't continue to replicate the assisted living model that Karen Brown Wilson has said doesn't work.

And I assume, of course, you're calling for regulation of assisted living.

I'd like to ask you, you know, the costs are already astronomical.

And now with the loss of almost a trillion dollars in Medicaid funding, this is going to hugely impact the nursing homes for sure.

And with the U.S. elderly population projected to double in the next 40 years, what do you see happening to the elderly population if we don't radically change to the kind of regulation and increased investment that you call for?

I think the places, the facilities, the homes that provide the most care are smaller scale.

Local control, as soon as control gets passed to a remote decision maker, we're all in trouble.

My mother consistently fell out of bed because she could no longer walk.

But when she would push her button to go to the bathroom or to use the toilet in the middle of the night and no one came, she thought she could leave her bed night after night on the floor.

And I live in Madison, Wisconsin.

The call I received was from Edina, Minnesota, a state and a half away.

How could somebody at that distance be on the phone with me talking about my mother's care when my mother was potentially hurt?

So no more remote calls, no more remote control, on-duty, licensed people.

I'm not sure if I said this to you, but I think I did.

In two of the facilities in which my mother was a resident, there was no nurse on call.

In one facility, there just wasn't one, the director said to me, I can do this, I don't need a nurse on staff.

And in another one, it was a remote nurse who visited every two weeks.

That's not health care, that's not nursing care.

So the availability of qualified, licensed care.

So finally, for listeners who may soon face the same decisions that you did for your mother or even for themselves, what advice do you have for navigating today's flawed system?

It's frightening, isn't it?

It's a race to the bottom.

Either we care for our elderly, back off from profit-making, go make money someplace else.

There have been discussions, quite recently, of vacated malls.

What are we doing with the mall space?

Well, that's a very interesting possibility, that they could be redefined as senior housing communities almost.

The streets are already there, the interior pattern is already there.

So the right people making the decisions, and this is a national issue, when we speak about oversight and control, yes, the states should take control.

The Commonwealth of Massachusetts already has started to investigate their facilities more frequently because of the fire that I described.

But it is a national issue.

So this really is not partisan.

Because all of us, Hubert Humphrey said it, and is often quoted, that civilizations are judged by how we take care of the elderly.

And right now, we are not doing a good job, and the track that we're on means that as the elderly population doubles, we'll be doing an even worse job.

We have to pull in and say we're going to work on this, and in these times, when people don't even know what committees are generating, what problems are even listened to in our nation's capital, we still have to lay the groundwork.

We still have to say we care, something has to happen here.

We have to actually get some laws written.

Absolutely.

Well, the book is Diselderly Conduct, The Flawed Business of Assisted Living and Hospice.

It's out from New Village Press.

Thank you so much, Judy Karofsky, for sharing your experience, your personal story, and all that you have learned about this with us.

Thank you.

Thank you, Francesca.

Thank you so much for bringing the issue forward.