America’s Home Care Crisis—And the Filmmaker Trying to Change It

Eleanor J. Bader: I’ve read that you became interested in home care because of your personal experience with your mom. Can you tell me more about that?

Deirdre Fishel: My mother was in one of my other films, 2004’s Still Doing It, which focused on the vitality of older women. My mother and her group of women friends were then in their 70s, and I made the film because their lives were so different from what was typically depicted. They were smart, interesting, and irreverent. My own mother was doing fantastically. Even after the death of her third husband, she went to the theater, worked, and travelled. Her women friends all had great lives.

By 2008 though, my mom was beginning to become frail, but it actually took another five years, until 2013, when she turned 85, for her to begin to falter. My sister and I talked to her about what she wanted to do. Would she move to Brooklyn, where my sister and I live? Would she move into assisted living? What about home care?

I had no idea what we were facing, but right around the same time that these questions were coming into focus for me, a friend invited me to a dinner party where Rachel McCullough, an organizer from Jews for Racial and Economic Justice, was speaking. I was already thinking about themes for my next film and worrying about my mom, so when I heard Rachel talk about issues surrounding domestic labor, I decided that that was it: I would make a film about home care workers who make poverty wages and simultaneously show how paying for care could literally bankrupt a family.

I was also able to plug into the Elder Care Dialogues being sponsored by B’nai Jeshurun, a synagogue on Manhattan’s Upper West Side.  The idea behind the dialogues was to bring workers and elders together. The organizers knew that both constituencies had to be on the same team; they needed one another in order to improve conditions for both groups. The perspectives from these diverse people enriched the film enormously.

EJB: How did you find the people you interviewed in the film?

DF: I found Toni Siegel, the wife of Peter Sturtevant, a former CBS television executive, who is living with a virulent form of Parkinson’s Disease, through the Dialogues. And I knew that I wanted at least one rural family to be included to show that this issue transcends borders. I found an organization—it is now defunct—called the Direct Care Alliance, in McClure, Pennsylvania, and one of the organizers there helped me find people to interview. The caregiver I included, Laurie Bahajak, earned just $302 a week caring for Larry Dobson, a man who was dying of lung disease. One of the saddest moments in the film is when Laurie tells us that after Larry died she got a job hauling black top that paid $5 an hour more than caregiving and provided her with health insurance. This obviously says something about how much our society values caregiving.

EJB: Was there anything you wanted to include in the film but couldn’t?

DF: Yes. We desperately tried to find someone on the brink of requiring help, to show how blindsided most people are when the need for care becomes obvious. Most people wait and wait and then have to juggle paid work, raising their kids, and trying to care for their elders—all at the same time. I wanted to include their perspective but felt strongly that both the caregiver and the person receiving the care had to be included on camera. Sometimes we had access to the worker; other times we had access to the client. In the end we only went where we had 360-degree access to both.

We did get to feature caregiver Vilma and Dee, the 92-year-old woman she cared for. Dee had family in California and it was great that we were able to film them hosting Dee and Vilma in their home along with footage of Dee and Vilma in Dee’s Staten Island residence.

EJB: The National Alliance for Caregiving estimates that more than 34 million adults are providing unpaid care to a person over the age of 50. Since another Baby Boomer turns 65 every eight seconds, why is caregiving not on the front burner of every social policy discussion?

DF: Overall in the U.S., we have no respect for work that is done in the home. In addition, we don’t see caring for people as a hard job that deserves respect. Providing hands-on care gives people a way to make a deeply human connection. The fact that the relationship is not valued breaks my heart. It’s bizarre. Caretaking is one of the biggest issues of our time and people don’t quite get it. When the Baby Boomers start to become increasingly frail, I think our country’s lawmakers will be bowled over.

In order to deal with this growing population of elders, we have to massively grow the care workforce. Caregiving has to be made into a desirable job. Unless this happens, we can foresee a huge care gap. I’ve been told that I shouldn’t use the word crisis, but it is a crisis. At the end of the day, caring impact everyone and that reality might just be the thing that pushes it along. Most people will face caring for someone or needing care themselves at some point. 

EJB: Why do you think there is so much resistance—or is it denial?—to working on this at the policy level?

DF: Underneath the denial of the severity of the coming crisis is the fact that, as a society, we are terrified of death. This manifests in disdain for the elderly, the frail, and the disabled. Our country is cruel. We don’t value childcare providers either. We act as if someone will magically appear to do what needs to be done, as if the work just happens. Still, as people continue to live longer, we will have no choice but to embrace decline as part of life. We have a long way to go.

When CARE was screened at the Virginia Film Festival, I met with geriatricians.  You’d think this would be a great time to enter this field, but they said the opposite. They told me that they’re paid less, work longer hours, and are generally disrespected by the medical professionals they work with. It’s crazy. When you work with older people, you need to spend time talking to them, deal with their kids, and have to move slowly to get things done properly. We should champion those who do this work, encourage more people to study geriatrics, and raise salaries so that workers are not shafted.

We asked everyone we consulted with in making the film what they believe is needed, and to a one, they all said the same thing. We need systemic change, coverage of home care through Medicare or another social insurance program to help people pay for what’s needed. We know that 90 percent of elders want to age in place, staying in their homes as long as they can. We also know that this will require social supports. There is no other way.

EJB: Is CARE being used as an organizing tool?

DF: Absolutely, yes. It’s been extraordinary. The film has been able to get people to coalesce around the National Caring Majority Campaign (caringacross.org). The Ford Foundation, one of our funders, is using it, as are the Public Justice Center in Baltimore, The Service Employees International Union, disability rights groups, justice centers, geriatric societies, senior centers, JFREJ, the National Employment Law Project, the Public Health Institute, and social workers around the country. The film has helped people see caretaking as valuable work.

Still, the movement is embryonic.

EJB: How much of a role do you think sexism plays in the denigration of caretaking as a bonafide profession?

DF: Of course, this is a women’s issue. The lion’s share of elders and care providers are female. I have no doubt that our attitude would be different if caregiving was a largely male profession. It’s alarming and shocking how sexist our society is.

EJB: What’s next for you?

DF: I’m the co-director of the BFA program in film and video at the City College of New York and am currently in the throes of making a news film about women and policing, which is being filmed in Minneapolis. Our goal is to have it completed by December 2018.

CARE, Directed by Deirdre Fishel, Produced by Tony Heriza, Edited by Jim Klein and Annukka Lilja, is a production of World Channel and American Documentary Inc. It is available for purchase from New Day Films. For more information, go to www.newday.com/film/care.