The Shape of Care, Season 2, Episode 3
Paula – [00:54:56] How would you want your family to remember you? [00:55]
Paula – [00:55:01] The Rose that used to be and the Rose now. [00:55:04}
Rose – [00:55:08] The Rose that used to be. [00:55:09]
Paula – and what was Rose like? [00:55:45]
Rose – [00:55:50] Driving my convertible. [00:55:53]
Paula – [00:55:53] Driving a convertible. [00:55:55]
Rose – [00:55:56] With high heels. [00:55:56]
Paula – [00:55:56] High heeled shoes. [00:55:58]
Rose – 56:27 – til I was 90. [00:56:29]
Paula – [00:56:30] She was 90 Years old,. [00:56:30]
Paula – [00:56:30] And what was your attitude like back then Rose? [00:56:32]
Rose – [00:56:34] Get out of my way. [00:56:36]
Mindy: Get out of my way.
Welcome back to The Shape of Care, a podcast about caregiving. I’m Mindy Fried.
You just heard 94-year-old Rose Santilli. And Paula Fox, who cares for her.
In our first two episodes, we focused on home- and community-based care. That’s what most people want – staying in your own home where you can get services as you need them. And staying close to everything and everyone that’s familiar.
But for many people, that’s not possible. Our loved ones are too frail or we just can’t manage them at home. And then there’s the cost. Medicaid pays for most nursing home care… but it’s harder to get Medicaid to pay for community- and home-based care.
For the next two episodes, I’m going to talk about nursing homes. So many are like medical institutions – Residents are treated like patients, and the quality of their lives is a secondary concern. One study found that over half the nursing homes in the US don’t provide enough staff to ensure basic quality care. And about a quarter have dangerously low staffing levels!
Face it – Most nursing homes are just not …. that homey.
Here’s how Rose’s daughter, Diane Santilli, puts it.
Diane – [01:02:42] You know, I don’t think anybody ever says, hey, someday I hope I wind up in a skilled nursing facility. [01:02:52].
Mindy – But we’re going to look at one model of care that’s designed to make nursing home facilities more like home. It’s called the household model of care.
We’ll start at a nonprofit nursing home that incorporates this model. It’s called The Jewish Home in Bridgeport, Connecticut.
Where there’s more institutional support for the relationship between residents, like Rose, and certified nursing assistants … the workers who do most of the daily care.
Like Paula Fox.
Paula grew up in Bridgeport, Connecticut, not far from the Jewish Home. She’s now 53. She was 14 the first time she visited a nursing home. And she says seeing the people there scared her. They seemed so old.
Paula – [00:10:23] – I was flabbergasted, blown away and as a 14 year old, my first response was to fear. And I did fear, and I even giggled in fact, and I didn’t know any better. 10:55.
Mindy – Yet four years later, when Paula was about to graduate from high school, her aunt suggested she train to become a nursing assistant… a CNA… and work at a nursing home.
Paula – [00:08:14] I remember praying and asking God, what’s next. What’s my purpose? Little did I know… The Lord said, Oh yeah, this is what you’re going to do with your life. And I’ve been doing that for twenty-eight years. [00:11:06]
Mindy – When I asked Paula how she knew that working with older people was what she was meant to do, she tells me about a time when she was still in training.
Paula – [00:12:18] I just never forget my first experience with near death with one of our elders. We were in the dining room where we will give out lunch. And this particular day we were serving hot dogs. And lo and behold, the elder the hot dog lodged down her throat. [00:12:41]
Mindy – A nurse ran over and began to perform CPR.
Paula – [00:13:51] She looked at me and said, Paula. You know, brace yourself. Because I’m not sure if I’m going to be able to save her [00:14:05]
Mindy – Paula watched in horror as the woman started turning blue.
Paula – [00:14:21] And I said, no, no, no, no, no, no, can I give it a try? She says, sure, she show me how to do the proper procedure. And we did the thrust and lodged that hot dog // out of her throat. [00:14:35]
Paula – [00:14:37] // And the very thing she did was look up at me and say, thank you, Pauly. And I was in. I was in all the way from that. [00:14:53]
Mindy: More than 650,000 certified nursing assistants work in nursing homes across the U.S. Over 90% are women, and most are women of color, like Paula. Many of them are immigrants. And most of the residents they care for are white, like Rose.
Being a CNA is often considered low-skill work. Yet nearly half have attended some college.
Nursing assistants are the heart and soul of nursing home care. They provide the essential work of caring for frail elders, like bathing and toileting. They help residents with eating and dressing. And they provide emotional support to the residents … and their families too.
Paula – [00:00:04] Good morning, Rose, how are you today?
Rose – 00:13 – I’m feeling fine. //
Paula: [00:00:34] I’m happy to see you this morning. I understand today we’re going to go be invited to do a podcast with our friend Mindy. [00:00:42]//
Mindy – I met Rose and Paula in the middle of the pandemic when the Jewish Home was limiting visitors. So we talk on Zoom.
Rose – [00:01:21] It’s a pleasure to meet you. [00:01:23]
Mindy: [00:01:24] It’s a pleasure to meet you. Shall I call you Mrs. Santelli. [00:01:28]
Rose: [00:01:35] Oh Rose. [00:01:36]
Mindy – Rose is lying in bed. It’s where she spends all her time now.
She can’t hear very well and doesn’t wear a hearing aid. So Paula repeats everything I say to her. And she often repeats Rose’s responses because her voice is so weak.
We talk for over an hour. It’s exhausting for Rose but she wants to talk. And it’s clear that she doesn’t mince words.
Paula – [00:04:59] How about the aides? What do you say to the aides if they’re good, they’re good, but if they’re not… [00:05:07]
Rose – [00:05:09] I tell the aide you’re horrible. You’re a horrible aide. Do you know that?
Mindy: Rose speaks up for herself. But many residents in nursing homes find it hard to do that. I learned that firsthand when my father was in an assisted living facility about 10 years ago.
One morning he told me that the aide who was caring for him had refused to pick up his hearing aid when it fell on the floor. She told him “Get it yourself”, and walked away.
My father was very upset. He was 97 and legally blind. He was once a union organizer who advocated for the rights of factory workers. But he no longer had the energy to fight for his own needs.
When I showed up at his room after breakfast, I found him slumped in his chair, still in his pajamas! I discovered the aide had stopped going to his room in the mornings. That meant he had no help with toileting or getting dressed, and he was missing breakfast.
I was furious. I had to become my father’s voice. So I went to the head nurse and got a new aide assigned to him.
I don’t know why that aide was so unkind. Maybe she was overworked and exhausted. Nursing home-work is physically and emotionally demanding… it’s also poorly paid.
Mindy – One of the goals of transforming nursing homes is to create a better environment for the residents… but also for the people who work there.
Traditional nursing homes are typically large buildings with long corridors and a hospital-like atmosphere. Generally, the rooms are small, and shared by two residents, who also share one bathroom.
Five years ago, the Jewish Home reimagined the way they provided skilled nursing care to their residents. Andrew Banoff is the CEO.
Andrew: Rather than building a 30 or 40 or 50 bed nursing home unit which was what every nursing home was built at from the year 1950 to the year 2000, someone said, wait a minute, we can be smarter than this.
Mindy: They built a new facility for 400 residents, each with their own private room and bathroom, organized in pods or suites. There’s an open kitchen, lots of common space, and an emphasis on providing residents with one-on-one personal care.
At the Jewish Home, each resident is assigned two CNAs. There’s also a nurse, a social worker, staff who do activities with residents, and a homemaker… that’s a staff person who provides meals.
Andrew: And if we do it right, we can staff it effectively and make it feel much more like a residential environment than an institution.
Mindy – [00:19:21] So how how was it for you to transition to this new model? [00:19:25]
Paula – 19:26 – I was super-excited. 19:28
Mindy – In the old facility, Paula took care of 40 to 50 residents at any given time. But that’s changed….
Paula – [00:17:51] So I have seven individuals that I’m solely responsible to do the charting and give the care the best care that I can give them in a day. 18:01//
Mindy – That means Paula has a lot more time to provide individual personalized care. The kind of care any of us would want for our loved ones…and for ourselves.
Len – [00:22:40] It turns out to be extraordinarily difficult to deliver a high quality of life in a setting that is essentially institutional//. 22:51
Mindy – That’s Len Fishman. He used to direct the Gerontology Institute at the University of Massachusetts Boston. And he’s led major efforts to turn institutional nursing homes into small households under one roof. He says traditional nursing homes don’t always prioritize the quality of life for residents. Len learned this firsthand when he became CEO of large nursing home. He tells me about mealtimes there.
Len – 23:11 – I quickly learned that the meal tray was was really the thing that organized life for residents. 23:19 Len – [00:23:22] – This big central kitchen in the morning would produce breakfasts. And they were sent up in these tray carts and the tray carts were taken into dining areas for people. And the entire thing that organized staff and residents was making sure that when the meal tray arrived in the morning, all of the residents were sitting in chairs ready for their hot meal. And if you think back from what it takes to get that to happen, you have to start waking up residents an hour, an hour and a half before the meal actually arrives because they have to be got out of bed dressed, assisted with getting washed and so on.// [00:24:08]
Mindy – Paula remembers what meals were like in the old setting:
Paula – 21:13 – we had a big dining room where anybody can go that was able to get a ride down. Over a hundred people was in that dining room setting. [00:21:25].
Mindy – But in the household model of care, the dining area is set up for a smaller number of people.
Len – 27:02 – The dining feels more like somebody’s kitchen or dining room than it does like an institutional cafeteria 27:08
27:16 – // where they can get from their rooms to the central areas without very much walking. Because every step you add makes it more likely that a resident will end up being put in a wheelchair by staff because it is more efficient to wheel them to the place where the food is being served or the activity is happening than it is to walk them. So proximity is extremely important. [00:27:42]
Mindy – The idea is to make it easier for them to stay mobile. When residents who can walk are wheeled to meals and activities, they give up some autonomy. And the small house model tries to keep residents as independent as possible.
But there are serious challenges to creating this alternative model. The main one is cost. It’s a lot more expensive to care for residents in private rooms. And Medicaid barely covers the cost of a traditional nursing home, where most residents live in shared rooms.
Len – [00:26:14} – If you want to provide a single room with a private bathroom, you’re free to do so. But Medicaid is going to pay you the same amount that you are getting for people who are living in a double bedroom with a shared bathroom. 26:31
Mindy – The gold standard for the small house model is what’s known as Green Houses. They’re skilled nursing facilities with up to 12 residents, all with private rooms and bathrooms. And they all have outdoor spaces that are easy to access and navigate.
Alex – [00:20:23] One of the key tenets of the greenhouse model is making sure that elders can get outside without having to ask permission. …where an elder can just get up and say, I’m going out in the yard and I’m going to do some gardening, I’m going to go take a walk around the grounds.
Mindy – Alex Spanko is with the Greenhouse Project, a nonprofit that provides support and technical assistance to organizations developing Green House homes. There are now about 359 of them across the country.
Alex – Elder autonomy is really big for us, you shouldn’t be in prisoner just because you have physical or cognitive conditions as an older person. [00:20:47]
Mindy – Autonomy for residents… but also for the nursing assistants who provide most of the hands-on care. In a traditional nursing home, nursing assistants are near the bottom of a hierarchy with more highly paid professionals on top. In the household model, frontline caregivers – CNAs like Paula – are essentially in charge of running a household of 14 residents. Len Fishman says they have much more responsibility.
Len – 38:06 – Which in my mind makes a lot more sense because the nurse aides actually know what’s going on with residents much better than anyone else, and they are fully capable of managing a household and allowing them that extra authority, responsibility is a sign of respect that many really appreciate. 38:37
Len – 38:38 – Unfortunately, that the pay for nurse aides is tremendously inadequate.
Mindy – According to the Bureau of Labor Statistics, certified nursing assistants earn a median hourly wage of $14.82 – meaning that half of the workforce, literally hundreds of thousands of nursing assistants, earn less. And one-third of them rely on public benefits to supplement their pay so they can support their families, according to the research group PHI.
Mindy – At the Jewish Home, Paula Fox earns more than the national median wage. She makes $18 an hour. That’s an annual salary of about $36,000 after 25 years at her job.
Paula – [00:26:04] Let me hydrate her. I’m sorry. [00:26:04]
Mindy – Paula tells me to wait before I ask Rose another question.
Paula – [00:26:00] I’ll give her another drink, ok? [00:26:02]
Mindy – [00:26:05] That’s ok. [00:26:05]
Rose – [00:26:05] Make that black vodka! [00:26:05]
Paula – [00:26:05] Did you hear her Mindy? [00:26:05]
Mindy – [00:26:13] yes. [00:26:13]
Paula – [00:26:13] I’m gonna make her a black Russian right now. [00:26:15]
Paula – [00:26:20] Is that the drink you like, The black Russian? [00:26:21]
Rose – [00:26:22] No, Manhattan. [00:26:23]
Mindy – As I watch Paula and Rose interact, I can see the familiarity and ease in their conversation.
Rose – [00:50:01] Paula has so much strength.
Paula – [00:26:57] when I close that door, I come into a home. We talk about the kids we talk about my husband and the family. 27:00
Rose – [00:50:23] I always say but you love him! [00:50:23]
Paula – [00:50:28] I knew you’re going to say that if you listen to me gripe. But everything is up in love concerning me and she’s right. She’s right. [00:50:38]
Paula – [00:48:38] and she’s been around, she has all she has a whole life that she’s lived, she’s full of wisdom. And everybody that comes into this room can get a dose of wisdom from Rose and encouragement. [00:48:56]
Mindy – Like many people who enter nursing homes, Rose suffered a series of health crises before she arrived at the Jewish Home. A stroke, a serious bacterial infection, a broken leg that required surgery. Eventually, her son and daughter moved her into an assisted living facility. But they were unhappy with the care she received, so they moved her to another assisted living facility. That one didn’t work out either. That’s when they moved her into the Jewish Home. Her daughter Diane says at that point Rose was in a bad way.
Diane – 54-17 – Some of it was anxiety and depression. Some of it was physical. [00:54:20]
Mindy – They discovered that Rose had atrial fibrillation…an irregular heartbeat, which can lead to blood clots, stroke and heart failure.
Diane – [00:55:37] We thought we were going to lose her then. Even the doctor said, well, she could linger like this for some weeks, but then she pulled through.
Mindy – Diane credits her mom’s capacity to pull through to the personalized care she received from Paula.
Diane – 55:50 – That’s the first time Paula brought my mother back to life, but not back to life, back to spirited life. [00:55:58]
Mindy – [00:22:08] Rose, do you remember when you first met Paula? [00:22:11]
Rose – [00:22:17] Yes. [00:22:17]
Paula: [00:23:02] What was the state of health you were in? [00:23:04]
Rose – [00:23:06] Oh very depressed. [00:23:09]
Rose – [00:23:13] I didn’t want to stay. [00:23:13]
Paula – [00:23:20] She didn’t want to stay. [00:23:21]
Paula – [00:23:37] We didn’t know whether she was going to live or die. And so I grabbed her and jumped in with joy and I said, I guess this is going to be one for me. [00:23:50]
Paula – [00:24:01] This here this human being right here that doesn’t want to live anymore, that just don’t want to go on anymore. Well, God if you put it in me to give her some life, that’s what I’m going to do. [00:24:16]
Rose – 24:33 – someone like Paula. She gives 100%. She loves so hard, and she protects me. [00:24:48]
Mindy – Rose felt protected. But even in a smaller setting with more personalized care, Rose had a hard time adjusting to the Jewish Home. In part because of the many residents there with dementia.
Rose: [00:07:22] Very depressing. [00:07:22]
Paula: [00:07:23] She said it was depressing. [00:07:26]
Mindy – There was one resident in particular who disturbed her.
Rose – [00:13:25] //She used to come in my room. //13:29
Paula – [00:14:32] She lived across the hall from Rose. So several times a day in the morning and the night she would be find her way here. And in the beginning, Rose was like, why are they coming here? And I gave her some tools. 14:49
Paula – 15:42 –I would say to Rose, I want to tell you how to help her get more orientated in her mind. 15:51
Paula – 15:54 – I would just say get familiar with her patterns. And one of the things was know her name and give her a smile first. [00:16:04]
Paula – 16:55 – And what she would do was sit down, wait a few minutes, get back oriented, and then she would say to you, see you later, you remember? 17:05
Rose – 17:06 – Yeah – 17:06
In February of 2020, a nursing home in Kirkland, Washington, was the site of the first known Covid outbreak in a long-term care facility in the U.S. Two-thirds of the 108 residents contracted the virus. And thirty-eight residents died. Many staff got sick as well, as did some visitors. Over the next year, COVID tore through long-term care facilities, including the Jewish Home.
Paula – [00:21:48] Oh. Covid was like a plague to everyone. [00:21:54]
Mindy – Before COVID, residents would go on day trips to the seaport or local restaurants. But by mid-March 2020, the Jewish Home stopped all outside activities. And no more eating together in the dining room. Residents were confined to their rooms.
Paula – [00:22:35] It was isolating. – [00:22:45] We were serving trays in a room. With plastic over our heads. And nobody expected to live like that. [00:22:58]
Len – [00:32:17] Nursing homes have been the absolute epicenter of the pandemic.
Mindy – That’s Len Fishman again. He says nursing homes residents are far more likely to get COVID, compared to older people living at home or other kinds of facilities.
Len – 32:41 – And yet there’s been very little outcry that I’ve heard for changing some of the characteristics of nursing homes that make the spread of Covid more likely. [00:32:56]
Mindy – for instance, shared rooms, with paid caregivers moving from room to room. In the beginning of the pandemic, most nursing homes didn’t have enough personal protective equipment – PPE – like masks, gowns and gloves. Some wouldn’t provide PPE for low-paid aides. It was a disaster.
In the first year of the pandemic, nearly a third of US Covid deaths were among residents in long-term care facilities.
Mindy – A study by researchers at the University of North Carolina, Chapel Hill, found that in the early months of the pandemic, residents in household model nursing homes were less likely to become infected or die from COVID than in traditional nursing homes.
Still, it was challenging to contain the virus, even in a place like the Jewish Home. CEO Andrew Banoff says 30 residents died of Covid in 2020.
Andrew – [00:39:08] So it’s……. [00:39:08]
Mindy – Devastating.
Andrew – [00:39:10] Yeah. There’s just no other way to say it. [00:39:12]
Mindy – And many more were infected…. including Rose. She had to be moved into isolation.
Diane – [00:39:37] When my mom was sick with Covid, my. Paula would get to work, get all duded out in the gear she had to put on and would just tell the other staff – I’m going to be in with Rose today and she’d spend the entire shift in there. She would not leave my mother’s side.//
Mindy – Rose wouldn’t start her day until she heard Paula’s voice.
Rose – [00:25:14] She became a part of me. [00:25:18]
Mindy – [00:25:20] She became a part of you. [00:25:24]
Rose – [00:25:25] Yeah. [00:25:25]
Mindy – Somehow, 94-year-old Rose managed to pull through. But there was another issue for Rose…. like most nursing facilities, the Jewish Home was closed to visitors for close to a year. That was one of the tragedies of COVID. Isolation. Paula says that the restrictions made the Jewish Home feel more like an institution than a household.
Paula – [01:08:55] COVID made it like that. 1:08:56
Paula – 1:09:00 – a simple checker game became forbidden. [01:09:03]
Mindy – By the time family visits were allowed again, Diane says her mother had deteriorated.
Diane – [00:12:20] She was hanging on and holding her own for the most part till the isolation and not seeing us got to be so great. And really, by the time I think that I got the arrangement for the compassionate care visits, it was almost kind of like it was too late. [00:12:37]
Music interlude… (theme music?)
Mindy – In our next episode, we’ll find out what happens for Rose and Paula. And we’ll hear about another close relationship – this one between the CEO of the Jewish Home and one of its oldest residents.
Andrew – [00:15:30] I said to him, I’ve gotten to know you and love you in a way that I could have never imagined. I want to do something for you for your 104th birthday, but I’ve never asked the question before. What do you get a hundred and four year old. And he asked me to take him to the casino. So I packed him up and we got an entourage of his family to join us. And we took him up to Foxwoods for the day. [00:15:55]
Mindy – Do you have a caregiving story to share? A question about navigating the care system? We’d love to hear from you. Our phone number is: 6-1-7 – 9-7-1 – 8-6-2-2. That’s 6-1-7 – 9-7-1 – 8-6-2-2 or e-mail us: at contact@shape-of-care–dot-org. That’s contact@shape-of-care-dot-org.
You can discover more about our show, connect with us on Facebook, Twitter and Instagram @the-shape-of-care. And to find out more about the people we’ve interviewed, check out our website, where you’ll also see lots of caregiving resources. AGAIN, IT’S AT at the-shape-of-care-dot-org. This project has been a labor of love, with the support of friends and family. If you like what you’re hearing, please support The Shape of Care financially at the-shape-of-care-dot-org. You can either make a one-time donation, or you can become a monthly patron of the show.
The Shape of Care is produced at Whiskey Lane Productions in West Roxbury, Massachusetts. Our mix engineer is James Donahue. Special thanks to podcast advisor, Lisa Mullins and editorial consultant, Jennifer Goren. Thanks also to Leo Martinez for work on our website, and to Isa belHibbert for technical support, and Franky Gonzalez Navarro, for assisting with sound and music. Our theme music is “Break Out” written by Josh Rosen, which he performs on piano, with Stan Strickland on sax and percussion. Other music in this episode is by Blue Dot Sessions. I’m your host and the creator of this podcast, Mindy Fried. See you next week!
Theme Music, ends cold or fades out