Q&A: The Inside Story on America’s Long-Term Care Crisis

No Country for Old People, a new three-part docu-series by filmmaker Susie Singer Carter and former U.S. federal prosecutor Rick Mountcastle, investigates widespread neglect and systemic failures in nursing facilities. 

In the series, which launched August 25 on Amazon Prime Video, Singer Carter tells a personal story about her mother, who lived with Alzheimer’s disease and received inadequate care in a five-star facility. Mountcastle, known for prosecuting Purdue Pharma for its role in the opioid crisis, connects his legal experience exposing corporate misconduct to troubling practices he uncovered in the long-term care industry. Together, the duo highlights how care facility residents with dementia and other disabilities are often silenced, overlooked, or neglected by a system that profits from their vulnerability.

In this Live Talk with Being Patient’s founder Deborah Kan, Mountcastle and Singer Carter share the stories behind the series, including Singer Carter’s firsthand account of her mother’s decline in a care facility and Mountcastle’s insights into how legal and corporate structures perpetuate exploitation.

As advocates of the ROAR (Respect, Oversight, Advocacy, and Reform for Long-Term Care) movement, the filmmakers said they intend the work to give voice to the voiceless and push for accountability. 

Being Patient: Susie, your mom was diagnosed with Alzheimer’s disease. How old was she when she was diagnosed?

Singer Carter: She was diagnosed when she was 72, but we’re pretty sure she started getting symptoms in her late 60s. We didn’t know anything about Alzheimer’s until she got the diagnosis of mild cognitive [impairment].

Being Patient: Your mom didn’t go directly into a home. It was a lot later in the journey that she was in a care facility. Tell me about how she first entered.

Singer Carter: My mom was living at home with my stepdad [Georgie], who was 12 years older. He, cognitively, was perfect, but he was physically hard of hearing. She was the eyes and ears, and he was the memory. They made almost a perfect person: they got along well, and they were each other’s best friend. When Georgie passed away, my mom was going through Groundhog Day — that feeling of “Where’s George?:“He passed away.” “What? Why didn’t anybody tell me?” 

I decided she needed to move in with me until we could get her acclimated to this new life. I didn’t know anything about Alzheimer’s. There weren’t a lot of resources when I was first trying to tackle this. There was also a big stigma. There still is, but it was even more because families were more inclined to try to protect the person with Alzheimer’s because it wasn’t viewed as a disease but more of a deficiency.

Being Patient: You’ve chronicled so much of her experience in this care facility, which is certified five-star by CMS, the Centers for Medicare & Medicaid Services in the U.S., which means it’s top quality. But that’s not what you found.

Singer Carter: No. This came out of COVID. I started to notice my mom was declining quickly. We were kept from seeing our loved ones during that time. I only got to see her on FaceTime or Zoom once a week. I kept seeing her progressively get worse. At this point, she was immobile but in a wheelchair; she wasn’t bedridden. She was very active and social.

Suddenly, she was disappearing before my eyes. She was in bed at three in the afternoon when we were Zooming and was not dressed. I would say, “What’s going on? Why isn’t she out of bed?” “Oh, I don’t know. We don’t know.” In hindsight, I realized almost everyone was isolated in their rooms during that time. Failure to thrive was a big issue during COVID.

The system is based on a business model that relies on understaffing. During COVID, because they were already understaffed, when any staff member tested positive and had to quarantine for two weeks, now you have less staff. Every day we got messages: 13 staff members tested positive for COVID, and who’s taking care of them?

Being Patient: Rick, you are a former federal prosecutor. You’re known for leading the prosecution against the OxyContin maker Purdue Pharma. Where’s the connection here with Susie? When did you get involved in this, and how?

Rick Mountcastle: In the last episode of Dopesick, which is [a TV show] about the case I prosecuted, there’s a mention of the next case we did, which was Abbott Labs, which had been off-label marketing an epilepsy drug as a chemical restraint for dementia patients in nursing homes. 

Susie watched Dopesick, and the Abbott Labs Depakote case also resonated with her because her mother had been placed on Depakote and had [become] immobile and incontinent. It had happened without Susie’s knowledge. She wanted me to come on her podcast to talk about Abbott Labs and Depakote. That’s how we first connected. 

During that conversation, Susie asked a hard question, because I was explaining [that] the system was broken. It wasn’t individual people. It wasn’t the staff. The workers try their best, but they can’t do what they have to do. It wasn’t them. It was a system that allowed these companies to run these nursing homes for profit over care.

The model they use is to cut costs by understaffing. She asked,“How do we change that? What can we do to change it?” Then she started experiencing some really bad stuff that happened to her mother that you see on No Country for Old People. She and I would talk about what she was going through, why it was happening. At the end, after her mother passed away in July of that year, we were talking about how to change the system. 

It’s horrible. It’s happening not just to her mother but to a lot of people. That’s how we came up with No Country for Old People.

Being Patient: All along, they’re trying to push your mom toward death. First, you thought it might be time, then you realize she’s not ready to go yet. She still wants to eat and drink. She was intubated and fed through a tube. Then they wouldn’t let you feed her or give her [water] — she was clearly, visibly thirsty. Talk me through that. I can’t believe they would not let you feed your mom. It’s almost like the medical system wanted her to die, and she didn’t want it.

Singer Carter: Looking back, they did. I felt it at the time. The hospice doctor said she’s going to succumb. She had this pressure sore, and they wouldn’t call in a wound doctor. She said, because she’s going to succumb to it anyway. I said, Well, you would succumb, too, if we don’t get a doctor. Anybody would. That’s ridiculous.

They put her on NPO — nothing by mouth — saying she was going to get pneumonia, meaning you would breathe in the food or the water and it would go into your lungs. All the experts we had on [said] that that’s ridiculous. You have more of a chance of aspirating when you have a feeding tube. My mom clearly wanted to eat; that was her life. They finally let me give her some liquids with a sponge. Her dignity was out the door. She had to suck on a sponge, only by me. No one else would do it.

Being Patient: What’s going on with our healthcare system where the elderly are so diminished, and it’s almost like they have no more rights? What’s going on with the system?

Mountcastle: The system is set up as a profit-making model, and it favors the businesses, the owners, and the corporations in ownership positions. It allows them to set their business structure that maximizes profit at the expense of taking care of people.

I also prosecuted nursing homes and nursing home operators. I saw the crossover between prosecuting an opioid manufacturer, where the victims were people that got addicted. You’re talking about addicts, who are voiceless. They’ve been stigmatized, and who’s going to believe someone who’s addicted to an opioid? They also exploit people with dementia or Alzheimer’s, and who’s going to believe them? The system is set up to allow the exploitation for profit of the voiceless. The system allows those exploiters to maximize that exploitation with very little consequence, very little risk of being held accountable. That’s what we want people to wake up to.

No Country for Old People is meant to go to people who don’t know about it, because any of us who have dealt with it — people like Susie and other family members — they know because they’ve had to live it. Everybody else also needs to know, because at some point in your life, you are likely to either need that kind of care, have a family member who needs it, or be a caregiver for somebody who needs it.

We want to make people aware of this system that exploits the voiceless. We we want the public to know what’s going on. That’s our overall mission. People should also think about all the residents — Alzheimer’s patients, residents in nursing homes — who don’t have a family member like Susie to advocate for them. There are many people sitting in nursing homes who have nobody to give them voice and nobody to advocate for them. We as a public need to know about that and do something about it.

Singer Carter: The ageism and the ableism and the misunderstanding of people with cognitive disability and Parkinson’s and dementia — there’s this overall idea that they’re not there, it doesn’t matter. If that were true, then what are you doing? You’re warehousing them. Because if they’re not there, but you’re keeping them alive, then you’re warehousing them.

You’re not giving them a quality life; you’re keeping them alive so that you can bill against them. That’s the problem. In the documentary, the chaplain came in and told me, Don’t worry about your mom because she’s demented and she has holes in her brain.

“The system is set up to allow the exploitation for profit of the voiceless.”

Being Patient: Tell people the complete story. It was six months in hospice, right? Tell me about that journey through hospice and those six months, and what you learned.

Singer Carter: My mom had gone in and out of the hospital because of this wound she had, a pressure wound. A pressure wound is emblematic; it is the hallmark of neglect. According to CMS, it is a never event. I didn’t know that at the time, because they were telling me, You can’t avoid it, this happens when people get to a certain age, they get bedsores.

When she was first taken to the hospital, nobody wanted to take responsibility for it. The hospital called me and said, Your mom was admitted with a stage four bedsore, sepsis and pneumonia, and 10 percent kidney function. They wanted to make sure I knew it didn’t happen [at the hospital] — so when I called the facility and said, How come no one told me that my mom had such an advanced bedsore? They said, “Oh, it didn’t happen here.”

Being Patient: What was the point of them keeping you out of the room when they were changing her or turning her?

Singer Carter: I kept talking to the administration. I knew they were understaffed….. The CNAs (Certified Nursing Assistants) were telling me, Can you help me hold your mom up? I said, OK. I knew there were supposed to be two people in there.

I went to the administration. I said, “I know you’re understaffed. What can we do about it? What can I do to help?” The administrator said, “We’re not understaffed. We’re absolutely not understaffed.” I said, “But your employees are saying that.” One employee told me they had to hurry up because they left a resident on the toilet. She was juggling between residents. It’s unfair to the frontline providers. They can’t do their job. They feel horrible. They have moral injury, which is devastating.

They’re short-staffed. You’ve got somebody that should only be dealing with maybe eight people in an eight-hour shift, and they’ve got 15, sometimes 30 people.

This whole week there’s been news about CMS basically rescinding the minimum staffing proposition, which is going to result in so much horror. It’s already horrible. Now it’s going to be like they’ve got free rein because they don’t have to do it.

Mountcastle: I want to make it clear that we in no way blame the frontline workers. We feel bad for them because they are working under conditions they shouldn’t be working under. They’re overworked and underpaid. That’s because of the business model. That’s because of the system. We really respect the frontline workers tremendously, and we want to help them get proper pay and proper support and staffing.

“You’re not giving them a quality life; you’re keeping them alive so that you can bill against them. That’s the problem.”

Being Patient: What can we do to change the system?

Singer Carter: We have a nursing home lobby — that’s powerful, making it their business to keep everything status quo. They have seats in the legislature and line the pockets of our politicians with millions of dollars for their campaigns. We don’t have that kind of money as the constituency, but we have power as a constituency.

We launched a movement called ROAR. — Respect, Oversight, Advocacy, and Reform for Long-Term Care — inviting people to be warriors for the voiceless. Nothing that’s been changed radically hasn’t started with people. That’s what we have to do. That’s our power.

Being Patient: Can you speak about the legal component in this neglect and abuse? Susie, did you have rights against the facility for neglect? Where does that fall within the law?

Mountcastle: Theoretically, you have rights — I say in theory. There are supposed to be enforcement agencies in each state. It’s usually the Department of Health as a licensing agency. There are ombudsman programs that are seriously underfunded, understaffed, but those are programs where both paid and volunteer ombudsmen are tasked with going in and giving voice to the residents. Unfortunately, they have limited power, and there aren’t enough of them, and there isn’t enough funding.

You have the ability to — if you can get an attorney to represent you — sue the nursing home if there’s serious abuse and neglect and an injury that results from it. I believe the government, both state and federal, should be doing more in terms of enforcement. The only way you’re going to change corporate behavior, in my opinion, is by holding responsible corporate officers accountable. That means criminally prosecuting them, the individual corporate executives. The government spends too much time going after companies. The companies have limited liability, and the companies write a check, and it’s business as usual, because the profit that’s made is bigger than the checks they write.

Being Patient: Susie, did you consider taking legal action? 

Mountcastle: I told Susie she should try to find a lawyer. Even though it’s not going to be full compensation, you’ve got to get on record what happened. The problem is that for people in these facilities, and if they have dementia, the lawyers have a hard time seeing value because value is normally attached to lost wages and medical expenses. No lost wages, and medical expenses are all being paid for by the government. What’s the value of the case?

The conversation Susie and I had was the value is pain and suffering. As a filmmaker, start videotaping what’s happening to your mom, because that’s going to show in very stark and real terms what the pain and suffering looks like. Then you take that to a lawyer who specializes in nursing home abuse. That may convince that lawyer to take the case. That’s a difficult thing to convince a lawyer — that there’s value in a case involving a nursing home resident.

Singer Carter: The kind of money you make state by state is capped. At the end of the day, the people responsible are shielded. There’s no transparency with their corporate veil. It’s the individual facilities who have insurance companies, and it becomes the cost of doing business for them, and that’s factored into it. 

Mountcastle: What we’re trying to do with the movement is to give voice to the voiceless and to collect the stories and use the media platforms that most of the public now consumes — social media, videos, and movies — to start telling those stories and getting people engaged and understanding what’s happening. A lot of people don’t know.

Singer Carter: Go to nocountryforoldpeople.com and go to the tab for the ROAR movement and sign up. Let us know what you feel, how you can contribute, whether you have done this kind of work before or you’re willing to make calls or whatever it is.

Traditional advocacy hasn’t worked. Writing our Congress and writing letters and going to Congress and going to the steps with signs doesn’t work. We need to try something else.