Award-winning filmmaker Deirdre Fishel walked around in a state of rage during the making of her documentary film, “Care,” which delves into the world of paid care from the perspective of both workers and care recipients.  Deirdre talks about the making of her film, and about how her vibrant but frail mother influenced her decision to make it.  As we head into the 2020 presidential elections, “Care” is a must-see film for candidates—and a powerful tool for advocates.  Note: this episode originally aired June 8, 2017. We have an update at the end of this broadcast.

Website for Deirdre’s film: Care
Learn more: Domestic Workers United

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Music: “Alya” by Dlay | CC BY NC ND | Free Music Archive

INTERVIEW TRANSCRIPT:

[INTRO/MUSIC]

JANA – Deirdre Fishel has a 20-year history of directing both documentaries and dramas that have premiered in competition at Sundance and South by Southwest, and been broadcast in 30 countries worldwide. She co-wrote a book based on her award-winning documentary called, “Still Doing It: The Intimate Lives of Women Over 65.” When she’s not making films, Deirdre is an Associate Professor and Director of the BFA in Film and Video at the City College of New York. She joins us today from New York to talk about her documentary called, “Care,” which delves deep into the world of home eldercare, as seen through the eyes of both paid caregivers and their clients. Deirdre Fishel, I am so happy to have you on the show. Welcome to The Agewyz Podcast.

DEIRDRE – Thank you.

JANA – Filmmaking is really tough. Why did you choose this subject?

DEIRDRE – I think very early on in my life, even when I was in my 30s, I was really aware of how panicked everyone was about  aging. My sister was very anxious about it, and yet we had this model of my mother. So that kind of led me into this whole other film, which was my last film, which was about – very different than care – about living vibrantly til the end. And so I became totally immersed in this idea that we’re aging very differently. We’re living a lot longer, and it’s really wonderful and something to celebrate.

DEIRDRE – But as my mother began to age past her 70s, into her mid- and late-80s, I sort of had to kind of wake up and go, you know, she is still totally vibrant, but she’s frail. And that was something that my sister and I had to grapple with. And as we kind of began to look at, sort of what options she would have – she was absolutely adamant, adamant that she wanted to be at home.  No matter what, she wanted to be in her home, that that was the thing that gave her dignity. And that sort of sent me in this direction of looking at paid care, because we’re both working mothers and we wouldn’t have been able to do it fulltime. And just kind of being shocked when I went into that world, first how difficult it was to navigate, but then also, when I realized how poorly people were paid, it just seemed so strange, because here was something that was so dear to us, to keep our mother at home. So why would this care be paid with poverty wages?  And that sent me into about a four-year exploration of this topic.

JANA – Is your mom still living?

DEIRDRE – My mother is still living, and doing very well. We finally convinced her to get a little bit of help. People are resistant.  I mean, that’s part of the issue here is, it’s hard for all of us to kind of like grapple with losing independence.  But the little bit of help that she’s gotten now, which is, you know, just a few hours, she’s still doing pretty well, has actually made her more relaxed, more comfortable, able actually to live more vibrantly, because she doesn’t feel stressed. So this woman is able to come and do some of her daily needs, get groceries.

DEIRDRE – And I think that’s the hard thing, is that people are so scared to talk about care, because it just, it’s so emblematic of the fact that we do ultimately decline. But the beauty of care is that having the care you need as you’re older, allows you to live as fully, you know, because you if you’re really struggling just to get through the day, or do your bills or whatever it is, having that little bit of help allows you to live a more dignified, happier life.

JANA – It sounds like your mom has been very independent. Is she living in an apartment, and where she living?

DEIRDRE – Yes, she lives in an apartment, which makes it easier because there are people around and a doorman. But it’s actually interesting that when we were making the film, one of the things that we really wanted to find was somebody just on the cusp of care, like someone who was sort of thinking about getting care, and then just got it. And we actually spent about a year trying to find just that story, like, someone, you know, “we’re thinking about it,” and then they move towards it.  And it was almost impossible, because what we heard over and over again from people in the eldercare world was that people think about it and think about it and think about it and think about, and often wait until they’re in a crisis, and then things start moving.

DEIRDRE – We’re not really trained to think like, Oh, I could get a little bit of care and that would be helpful and then maybe I’ll need more at some later point. So a lot of people don’t have that kind of radical – some people do, they’ll have a stroke or they’ll get, you know, their dementia will get to a certain point, but a lot of people, they just begin, like my mother, to need more and more help. And it’s often very hard for families in that juncture, because people like my mother, they don’t want it.  Because partly we’ve been told that we’re such a society of independence, that if you lose independence, it’s somehow shameful. And I think people really hold out. And I think that’s a real problem in our society, because care and interdependence is part of the human condition.

JANA – So let’s talk about the folks that you profiled in the film.  You have a total of four care recipients and four paid caregivers, each with their own specific set of circumstances yet all facing many of the same struggles. You said you took some time to find the participants.  What was the process like, and how willing were they – or not – to talk about their subject, about the material?

DEIRDRE – We thought, when I started for some, I had this idea that it would be harder to find workers, particularly people that were undocumented.  And there are a lot of undocumented workers, because poorly-paid people don’t want to do it. So a lot of undocumented people are filling in this incredible need that we have.  But the workers were actually very, very willing to do it because I think the ones who love their job, they really know that what – they get it, that what they do is give this really vital care, and they’re frustrated that their work is so undervalued. So the workers were actually easier to find.

DEIRDRE – The harder one was to find the Laurie story, because I don’t live in a rural area and I had to find an organizer who could kind of lead me to that particular rural story. But what I found was, much harder sometimes, was to find, we went through many cases where the recipients of care, were not very comfortable being filmed, and until we could find people who were willing to open their stories to us – and again, I think it’s the same thing – like Peter, who’s featured in the film, who is to this day, is such a brilliant, charming man even as he faces Parkinson’s. He was a superstar. He was a Rhodes Scholar, a CBS executive, traveled around the world.

DEIRDRE – And I think it was very hard for him. He did not agree immediately. I sort of hung out for a long time before one day he said, Okay, you can follow me with the camera. And he said, I haven’t held a camera since the Vietnam War, when he was a correspondent. But I think it was very hard for him, because he does wrestle a lot with this feeling of, that somehow he’s done something wrong.  Not just grappling with what the losses are, but this shaming thing that we have about losing our independence, which I think is an added burden for recipients.

JANA – Yeah, it’s particularly hard on men, too.

DEIRDRE – Mm-hmm.  I agree.

JANA – You do a great job of humanizing the impact of caregiving for a really diverse group, especially the financial impact of care, not just for the paid caregivers but for the recipients. One of the caregivers, Laurie, who you mentioned earlier who’s caring for Larry who has COPD, she takes home just $302 a week, she can’t pay her rent… while you have the middle class couple, Toni and Peter, who are going broke, paying for his 24/7 care.  You interview Ai-jen Poo, who is course very well known in this space. Can you talk a little bit about the financial impact?

DEIRDRE – Well, I think I actually came into the story, although my mother wasn’t a recipient of care, I was just so shocked by  the poverty wages. And I very much thought, at one point that I would make a film that was really just focused on care workers and the work itself.  But I think as I got in, I talked to Ai-jen Poo and to some folks at the Ford Foundation and really moved into the space, what I started to realize is you can’t just talk about the care workers, because this is a 360 financial systemic issue.  Because you cannot raise the wages for workers, because families are already going bankrupt. This is – most other countries pay for these kinds of services.

DEIRDRE – And the real craziness is, if you, you know, completely become super ill and you know, have a heart attack or get into a coma, or become so you know, you can go to a hospital and your insurance will pay hundreds of thousands of dollars, our system will do that. But what our system will not do is pay for, kind of, incremental services that could protect people.  And I really think it’s short-sighted. But the reason that I did this kind of 360 look at it is, the system just doesn’t work – from either side. You cannot expect people to make $13 an hour doing back-breaking work. You’re not going to attract the kind of people we desperately need. You know, maybe some people are angels, but most people want to feed their family, even if they love their work.

DEIRDRE – We need to be attracting people who are, you know, very capable, caring people who can go in and see that this is a job with some kind of advancement. So that’s one half of the equation. But you’re not going to get that if families are going broke – upper-middle class families are right now qualifying for Medicaid.

JANA – It’s incredible.

DEIRDRE – Who’s paying for it?

JANA – Right? We’re paying for it.

DEIRDRE – It is being paid for all over the place, by the system, but in a real kind of Band Aid way that is not really looking at doing this in the most efficient, humane way possible. And it’s a hard time to be making a film that’s aspirational for systemic change. I think Ai-Jen Poo is a visionary, and she’s really saying, We’re ahead of a crisis right now. Now is the moment to look at how to change our system. It’s not easy with the Trump administration. Certainly things are – we’re losing ground.

JANA – And of course, it has been a crisis for a while.  As Ai-jen Poo points out, the median income for a homecare worker, a personal care aide, is $13,000 a year. I mean, I think people would be surprised to know that.

DEIRDRE – I mean, I walked around in the state of rage.  I just couldn’t believe it. And there’s a woman in the film who’s a supervisor at a kind of-

JANA -Denise.

DEIRDRE – (inaudible) co-op, home care agency, and she says, What kind of a society would say that the people that take care of our parents, our elders, would make poverty wages?  And I think it is a testament to the ageism in this society, that we don’t value the end of life. We don’t want to look at it. It’s all about consumerism, and action.  But you know what?  There is a life cycle, and to not take care of people as they age, I basically think is criminal. I really do. Because unfortunately at $13,000, a lot of people just can’t do it.  We tried to show the best of care, and there is amazing care. But you’re not always going to get great care when you’re paying people, really, a wage that says, you’re not worth very much.

JANA – I was really impressed by how you, first of all, captured a broad range of folks who are care recipients. And you do a really great job of giving everyone equal weight. So it’s interesting for me to hear you say that you started out thinking it would just be about the workers, which could easily fill a whole film, but I love the fact that you connected everything. Where do people find support groups like Elder Dialogues? Can you talk a little bit about that and how you found them? That group?

DEIRDRE – Yeah, well, as I was in this space working, I was able to kind of connect with a group called Jews for Racial Economic Justice.  And they were working with a synagogue who were – their congregation was growing older, and they really were starting to think about these issues. And so they, you know, they thought that a good place was to start, to bring workers together, to bring care recipients or people who would need care, to begin to talk about their shared struggles, right?   That you couldn’t really fix this equation unless you looked at the 360 of all sides.

DEIRDRE – I think there was more hope at one point that these Elder Care Dialogues would pilot out nationally. But you know, I think we are in a very particular moment, where people, unfortunately, I think one of the things that happens now is that people are just so protective of any service that exists, or are trying to fight for it, and not maybe as expanding, thinking about the future. You know, we can only hope that we’re all going to kind of like, prepare for the long-term fight and maintain this vision, because without being catastrophic, as you said before, we all know that this has been a crisis for a long time, and it’s not going to go away. It’s going to only get worse.

DEIRDRE – And now is kind of a moment to be proactive. You know, we are ahead of it.  The baby boomers are still not in advanced age.  They’re beginning to age, but they’re not in advanced age. But as those boomers get into advanced age, we will just not have the workforce to do the work that needs to be done to take care of people, if they want to live at home. And, you know, institutional care has – not only do most people not want it, but it’s not necessarily that much cheaper. So I think, you know, certainly what my hope is that we can begin as a country to have more dialogues about what do we want, and what’s possible.

JANA – All of the care recipients that you profiled either did not want to go to a nursing home or were there and really suffered as a result of it. I mean, I’m not surprised that they wanted to age in their homes, but it’s really interesting that folks said, you know, “he was there for two months and it just didn’t work, and he actually ended up being worse.” I think people are reluctant to admit that.

DEIRDRE – I think people are scared about the economics.  And I think Ai-Jen Poo has really talked a lot about, you know, the economics are often – home care can actually be a relatively affordable kind of care. But there are a lot of institutions out there. And that’s what Medicaid is sort of in the habit of paying for. I mean, could you have better care in institutions? Maybe you could.  I mean, there’s a sort of systemic issue of, kind of, not really thinking about what’s going to happen to people as they decline and really thinking about what would be the best situation?

DEIRDRE – Now, some people – I know people who have said to me, you know, it worked out best for my family to have my mother go into a nursing home, to have my father… so you know, I hope the film doesn’t stand as a rebuke or a criticism of you know, say like, that’s never the better choice. But I think if most of us were to have an honest discussion about whether we would want to have our final days in an institution, or we would rather be home, particularly if it’s a home like Dee [care recipient in the film], that you lived in all your life, you know, you’re a single businesswoman, but you have a community in your apartment building, and you love your home and it has artifacts from your travels, or you’re Larry, and you live in a home and there’s animals and kittens and your grandson runs in and out. I mean, I think most people would agree. And, you know, do we really want to admit that we’re a society that’s going to institutionalize people as we age?  It’s like of like a sci-fi movie.  It’s pretty scary.

JANA – Right.  Well, there’s no one-size fits all. I don’t think the film comes across that way at all.

DEIRDRE – Good.  I’m glad.  I’m glad, because each situation is particular. But I know my mother would like to age at home and I know for me, I mean, when I think about it, I just, I’m sure I’ll be that same way.  You know, I love my home. My home is a lot of who I am.  And to lose, you would lose so much as you get older.  Like, you know, your mother lost your father.  You know, people lose their friends, their spouses, their children often move to the other side of the country. There’s so much loss.  And they say that moving people at an advanced age – when Dee, there was a question, when she could no longer pay for home at the end-

JANA -right, that was so moving.

DEIRDRE -and her sister gave her last money to her.

JANA – Wow – what a sister.

DEIRDRE – They were literally afraid that leaving her home might be the end of her life.

JANA – That was just incredible. I was absolutely floored by that.  You know, I have to be honest, there were moments where I was actually really teary during this film, because it was so beautifully filmed. There were some lovely transition shots that were just really arresting in their spareness, and cold New York… I live in Florida, so it’s pretty sunny, but it was very, um, not overly stark, in a way with those shots, but really beautiful, poignant.

DEIRDRE – Thank you.

JANA – How long did it take you to complete the project?

DEIRDRE – It took about… I guess we started in the Spring of 2012, and it premiered at Sheffield Doc Fest, which is a documentary festival in England, in 2016. So I guess basically four years, from meeting our, you know, meeting our characters, the first people we started filming were Vilma and Dee, until it was completed and out. So it’s a process. It’s a journey. It’s definitely an undertaking.

JANA – What was good about it for you, and what was hard?

DEIRDRE – I think the part that was good about it was that I really, you know, I found – because I actually did a lot of the filming – I found care so heartbreakingly beautiful. I just found that that hands on care, that when it was done in a way that sort of tried to give someone as much dignity as they could have… you know you’re talking about very intimate things. Taking them into the shower, helping them with bathroom stuff, and walking when they’re unstable and – but when it was done in a way that respected the person, and yet was done with such tenderness, it just, it continued to fill me with sort of like a love of humanity. That people could be there for each other in such a profound way. And so I was often filled with a lot of happiness, actually, despite the fact that people were, you know, losing, you know, independence or in the case of Larry and Peter, that they were facing illnesses. But there was something so human and wonderful, and I love these workers and what they meant to the families.

DEIRDRE – I think the hardest part is, always when you make a film, is raising money, continuing to have to try to weave the stories, continuing to try to figure out what needed to be in there and what didn’t. It’s such a complicated landscape, and film is ultimately not about information. So we would do screenings where some people would be like, there’s not enough information. We want more interviews. We want more facts, we want more cards, we just want to know more.  And then we had screenings where other people were like, No, you know, just leave it very spare and let’s just have the experience. But, you know, trying to, you know we wanted to move people, my producer and I, who really were in it together.  We wanted for people to enter into a reality that’s often hidden behind closed doors and really have a visceral experience. But we also wanted people to have enough understanding and be outraged enough at the system that they might take action, and sort of that balance is always tricky with a film.

JANA – Did you did you recut it based on…

DEIRDRE – Oh, we recut it a million times.

JANA – Right… so that’s really interesting, because I think it’s really – it’s its own thing. It’s not trying to be too many things.

DEIRDRE – That’s great.  You make a film, it’s always like, it’s almost like you’re chiseling a sculpture out of a piece of stone, you know, and you’re trying actually to come to some place where it feels organic, that it is what it is, you know, and that it doesn’t have lots of extra pieces. That it has a clear, kind of through-line. So it’s, it’s wonder- you know, that was the aim and that was the goal. But that took a lot of editing.  There were a lot of pieces to the film, and we were editing on and off for two years.

JANA – I’m really glad that you kept it focused on the characters. And I lived in New York City for 16 years. So I was familiar with at least the setting and the vibe that was coming from the characters who were a little bit more urban in feel than the other characters, and so when you went out into that rural location, I thought, Wow, this is really great, she’s going out into the country. I completely felt emotionally drawn to the story of Laurie and her caring for Larry. She winds up taking a trucking job.  Tell us about that.

DEIRDRE – I think she is the tragedy that is going to happen, which is that you take a woman who – and I had a similar feeling about just being out in this tiny, tiny town and a kind of lifestyle that I am really not familiar with. I live in New York City, so I also live in a very urban place.  But she is, she was so dedicated in this kind of salty way.  You know, she joked and she cajoled, and she’s very physical and able to take care of a man who was, you know, she needed to lift.  And she just had such a profound love of this work and was so good at it.  I also was really riveted. And to see someone like that come to the realization that they really can’t do this work, that it’s not fair to their family because they’re paid so little, the agency doesn’t protect them between jobs… it just – and that is the dilemma. She is a metaphor for what is happening: that people who are good at the job, who have other options are going to leave the profession just at a moment when we actually should be doing the exact opposite.

DEIRDRE – We could be attracting people to the profession.  And that’s what they call it, they call it “the care gap,” that we will have a care gap.  There will be far more people who need care.  And then talk about a, you know, even worse with the Trump administration making – you know, so many workers are undocumented.  And there was a moment, there was a light during the Obama time, when I think Ai-Jen Poo thought that there might be an opening for undocumented folks who were doing this kind of work to really elevate and say, Yes, we need you, and to give them citizenship. And we’ve so gone the other way, because we need people.

DEIRDRE – Anyone who is here in our country who can do this work is someone that we should be valuing and praising and applauding, that they’re here to do this work for us. Because it’s tough.  I mean, it’s very – I think that was the other thing that just constantly floored me was, it’s hard physically, it’s hard emotionally.  You have to be able to take a lot of pain in.  People get mad.  People who are feeling dependent or losing independence, or they’re ill and you know, they don’t feel well, they can often be quite grumpy.  And you sort of have to be able to rock with it, not take it personally, joke, cajole – it’s just… I could never do it. I literally was in awe of these women and I was, as you say, I was very in awe, particularly of Laurie.  And it is to me the ultimate tragedy of the film.

JANA – She has five kids.

DEIRDRE – And five grandchildren.

JANA – Incredible.

DEIRDRE – She left the profession, and just said, I can’t do it.

JANA – Yes, I think I wrote this down. She said, “caring for Larry” – her caree – “caring for Larry makes me feel like I’ve done something right.  And, pushing him, she says, “you’re not going to get better if you don’t fight.” I mean, I love her tough-love strategy.

DEIRDRE – She’s tough.  Yeah, I mean, she loved him.  I mean, she deeply, deeply loved him. And I think, we don’t value any work that’s done in the home. You know, we don’t value housework, we don’t value childcare, we never really took account for women, you know, who were quote unquote, housewives – all the work they did was just like, Oh, it just happened to get done. That’s a lot of work. And we need to value all of that work and to say, like, if all of the care workers and all the people who work in homes suddenly said, Okay, guys, we’re out. We’re gonna take a strike tomorrow, the whole country would shut down. That’s the work that makes everything else possible. That’s the work, the care work – whether it’s an elder or a babysitter – that lets you go out and do your job.  And to not acknowledge that, I think it really just doesn’t look at the economy in any kind of real way. It has the economy ride on the backs of other people. And I think that’s too bad for a first world country. I really think that’s a shame.

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JANA – There was a time when I was caring for my mom after my father died – I cared for my mom for three years, I moved back into my childhood home to care for her – and my mom said to me at one point, I’m so glad that your father left me in good shape financially. So I said, Mom, you do know that dad would not have been as successful as he was, if you were not here to take care of us and run the house so that he could go out and be successful, right? But because of her generation, and because of the way she was raised, for whatever reason, she really didn’t see it that way.

DEIRDRE – Right.

JANA – And my father was a very successful lawyer, and they had a great life together and he did leave her comfortable. Not wealthy, but just comfortable. And it really infuriated me when I heard her say that, but I had to be really calm and say, Mom, he couldn’t have done it without you. And that’s the reality which you were just speaking about earlier.

DEIRDRE – Yeah, I mean, it takes a lot of work to hold a household together. And it’s important work. And I just think that’s kind of the next phase of feminism, is also going to say, This work has to be done by somebody and that work needs to be valued. It’s important work.  Caring for people should be the most human, important work we have – more important than just going out and making a lot of money, which is, you know, what some people are motivated to do. But I guess that’s the thing about care that I really hope people take away when they see the film, is the incredible tenderness of what it means to be there for someone.

JANA – It was so interesting to me, too, that despite the circumstances everyone who you portrayed was just clinging to any quality of life.

DEIRDRE – Mm-hmm.

JANA – Peter could barely move with Parkinson’s. Larry was struggling to breathe, couldn’t move. Did quality of life issues come up? This was fascinating to me.

DEIRDRE – I think it was all about quality of life.

JANA – But just – clinging to that, you know, to the very end.

DEIRDRE – Yeah, yeah, I think that, you know at any given moment, as you get older, as you get ill, I always love when Toni says in the film that, you know, we are all abled until we’re not. If you live long enough, most of us – or actually all of us – will have some kind of a disability or some kind of decline. And I guess the question is, at that point, are you like a different person? Or are we still thinking like, Oh, yeah, that’s me, or that’s my mom. And how can we accommodate that? How can we ride with that, to give that person any kind of quality of life, any kind of human connection, any sense of dignity, to the fullest extent possible?

DEIRDRE – And at one point, Vilma says, and she believes this so strongly, she’s one of the care workers, [she says] that that is a right. That’s a very radical statement in our society, that it is the right of every person to have that dignity and have that care. I believe that, but I do not think that that is yet part of the national agenda. Because if it is part of the national agenda, that people have the right to that quality of care, whatever they can have, not luxury, just dignity, then we need to do things very differently, because that’s not where we’re headed. We are headed to some kind of warehousing in institutions. I mean, there are, like, Frontline [PBS] pieces that take a much harder stance at this than our film, which – we were trying to show the best of what’s possible.

JANA – But it was refreshing in that way.

DEIRDRE – [It could have been] a horror film, that basically says we’re all going to be headed to something, a very minimal kind of care, maybe cared for largely by robots. And you know, look, if a robot can take your pulse and send it to a doctor, notify them when you have to go to the hospital, you know, those kinds of uses of technology, I think are wonderful. And I think Ai-jen Poo, in particular, is really excited about that. So it can – technology can help us, too. But I just don’t think a robot is going to be able to talk to you, and make you feel that you have a human connection.

JANA – Can you talk a little bit about Domestic Workers United?  Vilma got quite involved with that.

DEIRDRE – Yes, she did. Domestic Workers United really had sort of a heyday at that particular time, when we were making the film, because – there are various around the country.  They had, New York had the first, what we call the Domestic Worker Bill of Rights. And so what that is, is it’s on the books that people should get a certain kind of income and also have certain kinds of protections.  Like, you shouldn’t have to, you know, if you work over 40 hours, you get time and a half. Those kinds of things.

DEIRDRE – The issue there is that even when these things go on the books, enforcing it is a very, very big deal. But that was the first time in the history of this country, that there was actually a statewide bill that said, you know, there has to be some kind of protections. And at the federal level, while Obama was in office, he signed in the first thing that actually said that domestic workers were under the same kind of laws as other workers around the country. Because during the New Deal and FDR, in order to get the southern states to sign on, they actually purposely excluded farm workers and domestic workers.

JANA – Right, right.

DEIRDRE – The South would not buy in. So this group of domestic workers, care workers being a subset, you know, elder care workers, have – it’s just sort of been built into the fabric of our system, that they would be essentially glorified slaves.

JANA – You referred earlier to what it means in our society, for care to be thought of as a private responsibility versus a public right.  And of course, this question is at the heart of the GOP health care reform right now – it’s been framed in this exact same way.

DEIRDRE – I mean, I think the question is, do we feel that we’re all on our own?  And that if I can afford, you know, good health care or I have enough money to, you know, get good care for my parents in the home, that that doesn’t really matter if you can’t.  You know, I find that, you know, in a country that thinks of itself as sort of Christian, I find that incredibly unchristian.  But above and beyond that it’s short-sighted, because maybe the 1% or 2% can afford some of these services. But elder care is not like babysitting, where, you know, you feel like, you have your kid, you work 40 hours, you say I get 40 hours of care.

DEIRDRE – Once you start to go into 24/7 care, which is what Toni and Peter have, or even 12 hours of care, we get into the high numbers of care. Basically, the calculator just starts going up and you get into the hundreds of thousands. So how much money do you have to have?  And I think that’s where people are not realizing that it’s only the very, very, very wealthy, where money will not be a consideration. So I don’t know how people are going to be able to afford it. I mean, Peter and Toni were upper middle class. They were not middle class. They had a lot of money.

JANA – Right.  That was a nice apartment.

DEIRDRE – A beautiful apartment, a really, really wonderful lifestyle.  You know, not riding around in limousines, but money was not an issue for that family. But when you’re spending hundreds of thousands of dollars a year, in five years that’s a million dollars.

JANA – Right.  She said on camera, We spent as much in the last 12 months on aides as I have earned in the last four years.  Amazing.

DEIRDRE – Yeah, it’s crazy. And then you have to say that, you know, she’s only about 70 now. So you know, it’s like, let’s even say you have a million dollars in the bank.  But she has to live another 20 years.  So who has millions?  You know, I just think that’s a really, really rarefied group. And if all of the rest of us who don’t have millions of dollars in the bank, but actually want to age with dignity at home, there’s gonna have to be some kind of systemic change.

JANA – Absolutely. And then there’s Pat, who gave her sister [Dee] $100,000 to stay in her home, and then she very poignantly says, But I have these expenses to look forward to myself. How old was Pat?

DEIRDRE – Pat was about a year or two younger, I can’t remember.

JANA – And she lived in California?

DEIRDRE – And she lived in California. Dee was from California and had moved, you know, as a young businesswoman, she went at one point, went to Columbia Business School and just really had created this life for herself in New York. And when she started to get older, her sister and her niece really wanted her to come back to California, but she had a life. Part of it was her apartment, her circle of friends. It was where she had lived her adult life. And she was, again, very, very adamant. And that’s, that’s a big thing in this world where people who don’t have children or have not gotten married, and their family lives a little bit far away – we really need care workers. We really need people to step in. And I know for, that the relationship between Jill and Vilma – Jill being the niece in California – was profound because Jill absolutely knew that the only way that Dee could stay in her home was to have Vilma [her caregiver]. And that was a gift.

JANA – It was. And she had actually – the niece, Jill – had come out and cared for Dee when she had had chemotherapy treatment, as I understood it. Is that right?

DEIRDRE – Yeah, yeah.

JANA – And she said, I just – as much as I love her, I just I couldn’t do it.

DEIRDRE – Yeah, it’s hard.  And I think if you talk to anybody who takes care of a parent, you know, who’s in a crisis, an older parent, and it’s, it’s hard. It’s very, very hard work. So what I sort of feel like is, if you’re lucky enough – and I think this is true – I mean, I think the good news and the positive news is that the families who have had good care workers are very grateful, and do get it.

DEIRDRE – And what we’re hoping that the film can do is help more people who haven’t had that experience yet, to have the experience so that we can kind of bring this insight into it for all of us. But I do think people often in retrospect, they are even more grateful, because in the moment, it can be such a crisis. My producer had had that experience.  His mother had eight children, but yet, as she got older, not one of them lived in the state that she lived in, and this care worker took care of his mother. And only in retrospect did he really grapple with how little she made. And I think that was one of the reasons he was so committed to the film.

JANA – We have three caregivers for my mom right now and we pay two of them privately, and we pay them $16 an hour.

DEIRDRE – Wow.  That really adds up.

JANA – Yeah, it’s insane. Fortunately, she has money, but it’s just – it’s a cash register. And the one who spends the most time with her works through an agency. It’s $180 for a live-in, which I found in your film was really interesting, that in New York, the one agency was paying $140 a day.  Peter went on Medicaid, but [his wife] Toni made the point of saying that using it was hard because there weren’t that many aides, and the reimbursement rate is just $140 a day. Is that right?

DEIRDRE – Well, what it is, is that they say that when you work a 24-hour shift, that you’re not really working 24 hours, that eight of those hours are night hours, so you shouldn’t be paid.  So they’re saying that you’re making 16 [hours].  It’s still not great, but it’s better. The problem is that even if you know, like, Toni, at one point wanted to go, and went to a lawyer and said, I want to tell them, I want people to understand that my husband is restless and up during the night. They’re not sleeping. I know they’re not sleeping. And plus, even if someone sleeps through the night, if you’re the person responsible and something were to happen, you have to be sort of awake, and sort of vigilant.

JANA – Absolutely.  Those overnight folks do not sleep.

DEIRDRE – And that to me is just – I do not believe that somebody doesn’t really know that. But it’s just at this point what they are able to get away with. They had had a couple of really great workers, when they were paying privately and it was much more, until they lost all their money. And then one worker agreed to continue having to suddenly stay to the night, but it was at a tremendous cost to her. And it just seems like, why is this being done on the back of this woman who was so generous?

JANA – What did you learn about your mom’s experience that you’re planning for yourself, if anything?  Or even from this film?

DEIRDRE – Yeah, I mean, I think one of the things that I would say is that my mother – it’s just a funny thing. You know, at one point, she was falling a lot and we were like, Mom, you’re falling.  She would literally, you know, we’d be walking and the next thing you’d looked down and there she was on the sidewalk. And it took a lot of convincing to get her to use a cane. But once you used the cane, she realized like, Oh, wow, I can walk better, I feel more stable, I feel more independent.

DEIRDRE – And we had a thing where I asked, you know, we finally said, Listen, we want you to get some care. It makes us nervous that you’re – we see her every weekend –  but that you’re alone a week.  So, you know, I wound up finding some people for her to you know, kind of vet and see who she would be most compatible with. And she was like, I don’t want this care. I don’t want anyone. I’m — okay fine. But then she wound up doing it.  And now all she talks about?  Oh, Jane, this, Jane that. Oh, she gets me these great things from the grocery store. Oh, she redid my closet. Oh, you know, she made my – you know, she got me this new toilet seat. It works a lot better. We were having a talk about this. Oh, she saw Malia Obama on the subway the other day.  And it’s just – both as a companion as someone to talk politics with, to do these little things that make her feel more comfortable in her home.

DEIRDRE – And I think what I’ve learned is that by getting a little bit of help, although it’s counter intuitive, getting the help you need at every stage actually makes you live more robustly.  Because it’s scary. You know, when you know you’re hanging on by a thread, and you feel imperiled or at risk, that’s not a good place to be.  And care, and levels of care that are appropriate – you know, look, if you don’t need more, you just start with what you need – actually allows you to live this very different kind of life. So I hope that my mother’s experience and also just this amazing experience I’ve had with all these care workers, has made me more open to kind of accepting the care that I need and not fighting it so much.

DEIRDRE – But whether the system will be better, you know, it’s hard to say.  And I do think that there are other things that can happen. I think people could live in community homes together, maybe each person doesn’t have their own care worker.  Maybe a group of friends get together and live in one place, and you have one care worker when one person could do it or, you know, I do think we’re going to have to be innovative. And I do think money is not nothing. And it is a big thing to handle. I just wish we would, like Ai-jen Poo, look at someone like that, who’s such a leader, a MacArthur Genius, who’s really on the forefront, and be rolling up our sleeves with her and saying, How can we be innovative? And how can we really figure out how to de-institutionalize care, and do stuff that’s more community and home care, which is what most people really crave.

JANA – I think the baby boomers are going to do this really differently.

DEIRDRE – I hope so.

JANA – And I also think, yeah, I also think millennials who – I’ve interviewed several people in that demographic – who are not tied to their homes. I’ve interviewed people from every generation and I’m hearing more of a clinging to the home from my mom’s generation. She’s 88, as I mentioned, and as opposed to my generation, I’m 57, I’m single, I don’t have kids and I’m in a home. I’d like to stay here, but I don’t need to. And from the millennials I’ve interviewed many of them have said, I don’t really care about my home, you know, it’s not a big deal to me. So it’ll be really interesting to see how each generation deals with it individually and what is there for them, if anything,

DEIRDRE – That’s a great way to look at it, because I think things will change and also, you know, we are living older. I mean, that’s the beauty of like, how I started, you know, speaking to you about my first film, which was about living vibrantly. I mean, that’s the great news – we’re living a really, really long time.  And that’s something to be celebrated.  But you’re not going to move- you might sail through your 70s like my mom did, or even sail let’s say through your 80s.  I mean there are people that are runners, and they’re traveling and stuff.

DEIRDRE – But somewhere in your 90s, you’re going to begin to decline, but there’s still life.  You know, there’s still moments that can be really had. My children are very, very close to my mother. And they value every visit she makes, you know?  And they are aware.  They’ll always say now, Oh Nana, she’s doing really well now, Mom. She’s really with it. She’s really in a good phase. And because she wasn’t doing as well before she got this little bit of care.  So it’s pervasive. And it’s taken a little bit of the responsibility away from us, too, in ways that I’m very thankful for.

JANA – Have you screened this film for any public officials, any elected officials or policymakers?

DEIRDRE – That’s interesting. I mean, we have, that is one goal is to take it to Capitol Hill.  And you know, we probably will do that with our PBS broadcast. So that is, you know, definitely something. But you know, one of the things about this is that, I mean, some films, you know, it’s clear that there’s like a bill about to be passed or something, and then (inaudible). I mean, I think that these things are more at the state level at this point.  But yes, that is definitely a goal.

DEIRDRE – We also are really trying to get AARP, that has been thinking very much about family caregiving, which is obviously really, really important, but they’re just on the cusp of really… kind of not separating those two out.  Because what you really want is some family care, but also like, you know, families can’t do it by themselves. So really seeing that, that people, it’s an extension of the family often, to have paid care.  And families are not doing it on their own. So that’s something that we’re really excited about.

DEIRDRE – And just trying to get it to public officials, to churches, to schools, to young people so they can start to think about these issues early on. I’m excited to hear that, you know, like when you talk about millennials, I think that is really interesting. And a lot of millennials also have the experience of having grandparents that have lived a really, really long time. So they get – you know, we might think, oh, they’re young, they don’t key into this issue, but I think that they do.

JANA – Oh, yeah, they do because they’re seeing lots of generations ahead of them, whereas we only saw our grandparents for a brief period of time maybe before they died.

DEIRDRE – Exactly.  That’s really true, that’s really true.

JANA – Well, I want to give you the opportunity to offer any last thought before we go. Anything you’d like to leave with the listeners?

DEIRDRE – Wow, no, you’re such an amazing interviewer.

JANA – Oh, thank you.

DEIRDRE – Yeah, I guess I’m so glad to, you know, to be speaking, you know, with you as someone else who’s thinking about these issues. The thing is that there really is an opportunity for something to be learned a lot from elder people. I mean, I think they have so much wisdom and so much experience, and to have people at home near us in our communities is really something that I think we want.  You know, I think intergenerational communities are really great, but you can’t expect young people, or families, to be able to do all the work alone. I just think it would be sad to think that people won’t be in their homes and they’d be forced into institutions. And we wouldn’t have the pleasure of having those intergenerational experiences.

DEIRDRE – So I think it’s really a gift to all of us, and also to embrace so we can go Oh, wow, there’s something to be had at every stage of life.  Look!  I think there’s something very reassuring about that for all of us, to not look at our futures only with dread, and say, Wow, there’s a possibility for some wonderful experiences at the end. And even if I need a little bit of help, it’s going to be there for me. And I’m going to be resilient and be flexible and keep showing up and enjoying life. I find that reassuring. And I think it could sort of send a different message out to all of us, about what life is.

JANA – Well, as someone who has caregivers in her life and who has seen how my mother has benefited from having them, I want to thank you for making this film and for portraying these workers with such dignity, because I don’t think we see this portrayal often enough. And so I really salute you. Thank you for making this film.

DEIRDRE – Thank you.  Thank you so much for the interview, and for all your thoughtful questions.

JANA – Deirdre Fishel, she’s an Associate Professor at the City College of New York, where she’s also Director of the BFA in Film and Video program, and of course Deirdre is also a filmmaker. We’ve been talking about her new documentary film called, “Care.”  It’s produced by Tony Heriza and directed by Deirdre Fishel.  We’ll have a link on the Agewyz website to the film’s website, where you can watch the trailer, learn more about how to host a screening of the film in your community or take action in other ways to improve America’s care system. Deirdre Fishel, thank you so much for being on the show and for your incredibly powerful, moving film called “Care.”

DEIRDRE – Thank you so much.

JANA – Since we first broadcast this episode, Deirdre’s documentary has become available to watch in its entirety on the streaming service Kanopy. To watch the film online, all you need is your public library card or university login. For more information, go to caredocumentary.com and click on the link at the top of the page. And as always, thanks for joining us. The Agewyz Podcast is produced and mixed by me, and it’s distributed on the nationally syndicated Speak Up Talk Radio network. I’m Jana Panarites. See you next time – and remember, every caregiver has a story. I want to hear yours.