Season 1, Episode 2
The Caregiver Trending podcast features discussions on caregiving topics, interviews with thought leaders, and provides expert advice for caregivers from Homethrive’s in-house Care Guides.
Our interview today is with documentary filmmakers Amanda Dyer and Tom Dyer.
Many caregivers for children or adults who are medically complex are exhausted and isolated. The award-winning documentary Unseen gives an unfiltered, honest glimpse into the parent caregivers that so often go ignored or unsupported as they raise children with disabilities.
Unseen follows Jess and Ryan Ronne, a blended family with 8 children, including Lucas, who has profound disabilities that require constant care. Their situation becomes more and more challenging as Lucas gets older and stronger. With limited resources and support, caregiving takes a toll on their physical and mental health.
Today, we have some of the filmmakers on the podcast to go behind-the-scenes on the making of the documentary, and what they’ve learned about the families that so often go Unseen.
Episode Transcript
Ali Habashi: All right, so tell us a little bit about your assumptions before you started working on this documentary about these parents, and the knowledge that you have now.
Tom Dyer: That has been a wild journey for both of us, I think. When we first started on this project we had no knowledge.
We didn’t even set out originally to do a film on this but the concept kind of fell into our laps. We met the Ronne family through a mutual connection. We just happened to live near them and heard a little bit about their story and started asking some questions, and we were just floored by what a lot of these families go through on a day-to-day basis, and realized it was something that was happening around us that we were just totally unaware of. Something we say quite a lot is caregiving like this often happens behind closed doors at home.
If it’s not part of your everyday life or your field of view, you don’t witness it and it goes unnoticed. And that was kind of the catalyst for what we wanted to do is to, with as much dignity as possible, bring this to light and put it in front of people who were like us that had no idea that a lot of these challenges existed.
A lot of families even in our own neighborhoods were dealing with things that were like this.
Amanda Dyer: I remember asking Jess and Ryan “Aren’t there resources out there? I feel like I’ve heard of programs and things that can help families who are caregiving.”
And they said, “Well, yeah, there’s some things out there, but even trying to access those is often a battle. You’re constantly trying to justify why you need these resources. You’re filling out paperwork. You’re answering the same questions over and over. You find out that there was a program on paper, but it’s not actually funded and therefore it doesn’t really help you. Or your family’s disqualified for some reason because of a special situation.”
So it was just very eye-opening to find out that what we thought was out there or programs that existed just really weren’t helping families the way that we imagined.
And we heard that from so many different families. So now we go into it with completely different mindset knowing that these are families that deserve resources, deserve support, and want to use the stories in the film to help make that more widely known.
Ali: Was there a moment when you were speaking to the Ronnes that really cinched in your mind, this is a great subject for a documentary?
Amanda: Yeah, I think we had a couple of those moments where, like Tom said, we weren’t planning this. We didn’t think this is going to be our story, let’s go out and find it. We met the families and realized, oh my gosh, there’s so much need here. We looked around, and we didn’t see any other media that was really telling the story.
So it seemed like there was a huge opportunity for it and then we started putting out feelers to see if we could meet some more families, and see if they were saying the same things. And we just heard the same stories over and over and over. And that was the realization that, all right, this is going to be our opportunity to try to make an impact in something important.
We realized the need and had the skills and opportunity to do something to contribute. And so it really just became a passion project of ours at that point.
Tom: We heard a lot of the same vocabulary get used from family to family. And one thing that always stuck out to me was, unprompted, every family or every person that we talked to would say “24/7” when they described the consistency of their situation.
And so, just the idea that these families are experiencing very similar struggles and challenges, extremely regularly, literally 24/7. I think that was eye-opening to us, especially as we tried to include other families and other voices. The story that is primarily centered around the Ronnes, but also indicative of a lot of other families in the community.
Ali: I want to know, have you guys kept in touch with any of the families in the documentary or the Ronne family?
Tom: Yeah, we’ve definitely kept up with them. I think we’ve kept up with a few of them, for sure.
Amanda: Yeah, we actually just saw the Ronnes not too long ago. They’re working on some long-term care solutions for their son and some other families that live in their area. They’re the world’s best advocates. So they’re still going strong, working toward what comes next. A lot of people often ask us are they okay?
The film shows them definitely at their lowest point. It was the middle of the pandemic and they had just a lot of things happening. And so they were definitely at a very rough point. I can say with confidence, they have definitely come away from there, and that doesn’t mean everything’s perfect now, but they definitely are doing well as a family and finding the right solutions to be in a good place.
Ali: Oh my gosh, I didn’t even think about it having been filmed in the middle of the pandemic.
Amanda: Yeah, that added a lot of challenges to say the least.
Ali: Yeah, I mean, if there’s no help when there’s not a plague, then I can’t imagine…
Amanda: School was canceled all the time. Well, school was canceled unpredictably if someone had a case or something.
And so with kids who really thrive on having a routine and a predictable day-to-day experience and then taking that away just randomly, it was a lot of challenges for sure.
Ali: Speaking of those challenges and those kinds of themes that you saw between families, there’s a moment in the film that I think about pretty often at this point. Where it highlights not only the longevity of the role of parent caregiver, but also kind of the danger of it.
It’s a very different thing to imagine a younger parent taking care of a child with a disability, and another thing entirely to have an aging adult taking care of a man whose medical complexity may involve tantrums or lashing out physically. And I think about that a lot now, especially in conjunction with that sort of 24/7 that these parents are faced with. I’m curious, is there one particular moment from the documentary, now that it’s all wrapped up, that you come back to? That has sort of stuck in your mind?
Amanda: Yeah, I think that there’s one line that, the therapist that we feature in the film says. She says there’s no burden of a child, it’s the burden of our society not supporting these families. And I may have the exact wording mixed up, but that’s the sentiment. Families are doing this very important, very valuable work of caregiving.
They’ll do anything they can to make sure their child has the best life possible and the most opportunities possible. And as that child becomes an adult as well, that continues on. But the point is not that the person themselves is the burden. The point is that our society doesn’t accommodate people with disabilities and different levels of needs.
And whether that’s the way that buildings aren’t accessible or government programs don’t cover the people with the most needs, or workplaces don’t allow flexibility, and whatever that looks like in different, spheres, there’s so much opportunity for our society to better accommodate all the different types of families that exist, and relieve some of that, heavy lift that caregivers have.
Ali: You guys just mentioned flexible workplaces and maybe more community resources. Are there any solutions that you’ve come across that are surprisingly simple or quick to implement that you thought, well, I mean, if more of us just did this right now, it would really help.
Tom: The film itself, the goal was never to necessarily put forth specific solutions. And the reason for that is because one: we wanted to make sure that the idea of awareness was hit home. We wanted people to experience the need first that these that these families have.
And then two: solutions are not always one size fits all. There are multiple solutions; different families need different solutions. But to directly answer your question, the simplest thing that you can do or people can do is to just engage with these families.
Even if it’s just conversation or checking in on the family down the street that is a caregiving family, and just acknowledging them and being friends or neighbors. There’s a couple of voices in the film that say the same thing: hey, we don’t always need you to do something specific, but let’s just talk, and check in on me, or literally just acknowledge me.
I mean, that’s why the name Unseen is there, because a lot of these families do feel unseen, not only from a support side, but also literally just from a community side. And so just doing something so simple and so direct as that, whether that’s in the workplace or in the community or in your neighborhood, could go a long way for someone.
Amanda: And I think just really recognizing that if you don’t live this reality, you probably don’t understand it. And so having a nonjudgmental approach to it, understanding that they’re living a different type of life and their needs are going to be different and trying to make space and accommodate that in a workplace setting.
Simple things like having flexibility or not being overly penalized for needing to have a change of plans or change of schedule. Things like that can make a huge difference to caregiving families, allow them to keep their jobs, which can be a huge source of achievement and contribution and be very meaningful to a person.
So I think that was a big takeaway for us is that there are big sweeping changes that need to be made, of course, but there’s tons of little things that the average person can do that will actually make a big difference in the day-to-day life of a caregiving family.
Ali: All right, so you mentioned awareness. So now that this documentary has been out for a while, have you begun to witness that awareness in action? I’m curious to hear what your audience has said about the documentary and the issues it highlights.
Amanda: The response has been so overwhelming. I mean, beyond what we ever imagined. We hear from caregivers all the time who say that they just feel very validated that they’ve never seen anything that kind of told their story in an open and honest way and helped them realize like, hey, I’m not the only one that might be struggling.
So they found that really cathartic. So that’s always amazing to hear. The way we have structured our impact and outreach campaign is to work with organizations to host private screening events or public screening events where they bring together their community.
So whether that’s a nonprofit that works in the space or a government agency that has social workers, or teams that work with families, or in a corporate setting they might have a caregiver ERG. All those groups will host screening events where they watch the film together, have discussions afterwards, and then use it as a conversation starter to talk about, okay, what do we do with this information?
We all learn something from watching this. It definitely kind of pulls at your heartstrings. So let’s talk about what we can actually do with this information. What are the action items we should take away from this? And so that’s been very cool to see that all these different types of organizations using the film in different ways to have that conversation in their settings.
You know, it might be a children’s hospital that talks about how they can better support the caregivers. It might be a company that talks about how they can adapt their policies to be more caregiver friendly. But we’re really seeing those ripple effects of the film opening that conversation.
That’s been really powerful to see.
Ali: If there is a company out there or an ERG that does want to host a film screening of this documentary Unseen, how can they do that?
Amanda: Yeah, we love that. If you come to our website at caregiverdoc.com, we have tons of info there about how you can host a screening and get in touch with us that way and we’ll reach out to you.
We can have a conversation about the best way to structure that. We’ve learned a lot of best practices from some of our other partners and screenings that have already happened, so we can share those with you. We’ve seen so many situations where the film has been a really powerful tool for companies to open that conversation.
And we’d love to work with any of your listeners who might want to do that.
Ali: So I know we worked together in the past when the documentary was first being released on creating a caregiver friendly workplace toolkit. Can you tell people where that’s available and what’s available in that toolkit?
Amanda: You can find that toolkit at caregiverdoc.com/work, and it is full of tons of resources for the employer. So things like, best practices, how to make your workplace more caregiver friendly, policies and programs that can contribute to that, how to talk to your caregiver employees and kind of find out what would be most helpful to them.
There’s also some data to make the case of why it’s worth prioritizing caregivers. So there’s tons of useful stuff there, some video clips and things you can share.
Then there’s also a side for caregivers and caregiver advocates themselves to use. How to advocate for yourself in the workplace. More data, video clips, things like that you can use if you need to talk to your manager or HR department about policies and programs that can be helpful for you or other caregivers in the workplace.
So really just tons of stuff in there. We also have discussion guides for workplaces that are using the film as a conversation starter. Caregiverdoc.com, there’s tons there you can find, and get inspired to have this conversation at your workplace.
Ali: Now I did realize I did skip over a question and I am curious. So visually, the film has several sort of artistic through lines.
Of course, the one that I remember is that glass sphere shattering on the ground and a pair of hands picking up all the little shattered pieces. As you were filming, was there a visual that you spotted in the background of a Zoom call with one of these families or maybe in the background of the Ronne’s house that really hammered home the need for that help?
Tom: I think visually what stuck out to me the most in that regard was an element of the film is that it follows the Ronne family, but there are moments where we hear from other families that are speaking to a lot of the same issues as a way to bring in more voices so that it is known that is not just a singular story.
This is a story that exists in a lot of different families. And I think, visually, for me, one thing that really stuck out is when we started receiving these video testimonies, testimonials of people that would send in responses to questions that we would send them the body language of a lot of these caregivers, that they were so passionate to answer these questions and to not only fight for themselves and for their families, but for this idea of supporting caregivers who so often go unsupported.
I mean, you can just see there’s a physical presence that a lot of the caregivers have that to me just communicates their passion, but also their level of of stress or anxiety or the things that they’re dealing with. And so, visually, I hope that, what gets communicated a lot is just the, raw need, and desire, that that these families have to take care of themselves and those around them.
Amanda: I always thought it was interesting how a lot of the moms would say like, oh gosh, I didn’t do my makeup or I’m just wearing a t shirt in this video because I didn’t have time to do anything. And of course we tell them that’s not important at all, but it was just kind of indicative to me of these are caregivers living in the trenches who, I mean, the wording they would say is, we’re hanging by a thread.
You just don’t have time to care about superficial things because you’re really trying to, in some cases, work for the survival of their child, like the day to day, well-being of their loved one. It really just helps you see that they have focus in their life on what is important and what is valuable to them.
Ali: I want to talk about those testimonials. Or about those call ins that you guys received from those different families, because I do remember, in the documentary watching through them, and I remember one man, I think, who was talking about how he’d had a heart attack?
Tom: The comment that he makes in the film is that he had a stress-induced heart attack at 30 years old. And I think the profoundness of that is just, being 30 years old, you should be in the prime of your life.
You should be healthy and managing a manageable amount of stress. I think what he was trying to get across is that they were not managing a manageable amount of stress.
I mean, they have experienced some things that they were just very overwhelmed by.
Amanda: And they’ve been turned away from so many different resources, and really felt like they had absolutely no options. You can understand where something that traumatic happens to someone when you really feel like you have no options whatsoever and you don’t see a way out.
Ali: Oh yeah. And I’m assuming those options don’t get any more numerous if and when you can no longer care for your child.
Amanda: Yeah, that’s a huge issue that we heard so many caregivers, like they say that’s what keeps them up at night is what’s going to happen when I’m no longer able to do this.
And the options are super limited and often not what anyone is comfortable with their loved one experiencing. They don’t have confidence in the quality or safety of the care that they would receive. So yeah, that’s a huge issue that plagues so many caregivers. They literally say I can’t die, because I don’t know what’s going to happen next.
We really have a lot of work to do on what happens when the parents can’t be that day-to-day caregiver anymore. For whether that’s health reasons or mental health reasons, financial reasons, whatever that looks like.
Ali: Ugh, 24/7 and they can’t die.
Amanda: And we hear too, they say the caregiving itself is wearing me down and I can feel my health declining. So it’s really only accelerating that process. So I may not even be capable of that as long as I’m doing it. So it’s really a lot to take in. It can feel quite overwhelming, but I mean I do think there is hope, there are things we can do.
I think we, as a society, are bringing more and more attention to the role of caregivers. I think we have seen more of a focus on eldercare, just as there are more people in that situation. And that just opens up the conversation to also bring parent caregivers into that conversation as well.
So I’m, I’m hopeful. I think there is more focus on it. There’s going to be more changes, and more opportunities for people. So, we just hope the film can play and will continue to play a role in, you know, making people realize that there’s millions and millions of caregivers in our community and we have to start addressing what that looks like.
Ali: All right. I like this trend. Tom, do you have a hopeful thing?
Tom: Yeah. Yeah. I mean, I do have a hopeful, side to it. I mean, we made the film, the film is very heavy, and the reason that it is so heavy is we just didn’t feel like putting a bow on it. We felt like putting a bow on it in any way would water down what a lot of the families that we were talking with were experiencing.
We didn’t want anyone to watch the film, walk away and go, oh, well, they seem okay. But the hopeful thing that I saw in a lot of this and a lot of these conversations and especially seeing now as the film gets in front of people is, the community of these caregivers to fight for themselves, fight for their loved ones and work together on a lot of this.
When we made this film, we didn’t think caregivers would want to watch it because we thought, well, this is what they live every day. Why would they want to see that or experience that again? And what we’ve found is that it has become. Caregivers have latched onto it because it is something that makes them feel less isolated and less alone.
And so at least around the film or in response to the film, there has been a great community that I think has come together and supported each other. And then working with a lot of organizations that are, able and willing to use the film as a tool to create awareness within their own organization or within their own small community.
I mean, that’s the biggest compliment I think that we could get is that when it is used for some sort of growth or positive development, at least to get a conversation started. I think there’ve been quite a few positives that come from it for sure.
Amanda: And despite being very busy and often very exhausted, caregivers themselves are the best advocates I’ve ever encountered.
They’re, like you said, fighting for their loved one, advocating for their rights, for their health, for the things they deserve. And coming alongside each other to support each other. So I’m really encouraged by that. And hopefully we get to the point where they don’t have to do that.
That’s not an item on their to-do list. But it is always cool to see how caregivers themselves do come together and work toward a better future.
Further Resources
- Unseen Website
- Host a Screening
- Toolkit: Creating Caregiver-Friendly Workplaces
- Homethrive ERG Toolkit
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