Season 2, Episode 4
THEME MUSIC
When Paula Fox began caring for 94-year old Rose Santilli, she could sense what Rose was thinking. Who IS this loud woman?!!
Paula – [01:00:12] She used to ask, what is up with Paula? I had this wild and crazy personality. She’s noisy and this and that. [01:00:15]
Paula – [01:00:47] Do you remember that? [01:00:48][0.7]
Rose – 03:23 – Yes. 03:24
Rose remembers it. But eventually Paula won her over.
Paula – She called me her three C’s. What’s the Three C’s, Rose. [01:02:17]
Rose: [01:02:18] compassion, caring and comfort. [01:02:25]
Mindy – Welcome to The Shape of Care, a podcast about caregiving. I’m Mindy Fried.
We met Paula and Rose in our last episode. Paula is a CNA… a certified nursing assistant, at the Jewish Home in Bridgeport, Connecticut, where Rose lives.
CNAs provide the most intimate care for nursing home residents. And Paula has an uncanny ability to make people feel at ease. Still, even she had a hard time getting Rose to do something as basic as taking a shower. Rose hated the showers at the Jewish Home.
Rose – [00:28:38] I was afraid. 28:43
Paula – [00:40:23] I was going to figure out ways not to give up on her and have her give up on herself. And it really was a challenge. [00:40:30]
Rose – 28:46 – She got me to take the shower. [00:28:49]
Paula – [00:31:33] The anxiety, although it was still there every single time when it was the shower was really over, she was delighted. She would say, I’m so comfortable, I feel so fresh, I feel so clean. [00:31:49]
Rose – [00:31:53] – Stimulated. [00:31:53]
Paula – [00:31:55] – Stimulated. [00:31:56]
Paula – 29:46 How do you feel now about taking showers? [00:29:50]
Rose – [00:29:54] I dread it. [00:29:55]
Paula – [00:29:59] You dread it, but we get them done. [00:30:00]
Music/beat…
Mindy – Paula has a close relationship with Rose. In part, because Rose needs a lot of help – from bathing and grooming to eating. But that kind of connection isn’t possible if it’s not baked into the culture of the care facility. And it’s not possible without enough staff to attend to residents’ needs. Paula is responsible for caring for Rose and six other residents. That may sound like a lot, but in her last job she had to care for forty. At the Jewish Home, Paula has the time to do the things Rose likes best.
Paula – [01:01:05] When I started curling her hair and I would show her a picture of herself. You know, like using a mirror, but instead I would use a picture so she can see herself. And she hated pictures, Mindy, but I would take the picture after grooming her and doing her nails and things like that and show her how much I was going to love her, giving her the things that she loved. [01:00:59]
Music/beat…
Mindy – Millions of people are now caring for loved ones. As we age, more of us will need care. Over the next 10 years, the number of people in the US who need support is expected to double!
This issue is personal for me. I was a caregiver for my father. Now that he’s gone, I think about what will happen to me if – or more likely, when – I’ll need care. Most of us would choose to be cared for in our own home. Right?
But what if we really need to be in a facility. Or need to find a place for an aging parent?
There’s a LOT to consider. Let’s start with the cost.
I’m blown away by how expensive it is to live in a nursing home! Let’s say you’re in Connecticut. To share a room AND a bathroom with someone you’ve probably never met before – is $425 per day. It’s like staying at the Ritz, but without the chocolate mint on the pillow and the jacuzzi in the bathroom! If you live in Mississippi, where the cost of living is a lot lower, the bill could still be up to $232 a day. How do people cover the cost of nursing home care?
I asked the CEO of the Jewish Home, Andrew Banoff. About 80% of their residents are covered by Medicaid. How does that work?
Andrew – [01:03:15} It’s the inverse of most everything in society. To qualify, you have to have nothing. Um I think that’s the current Connecticut reg is that you’re allowed to have total assets of less than $1100. So you will have had to spend all of your assets doing other things. [01:03:33]
Mindy – You’ve likely heard the phrase, “spending down”. That’s what this is. You need to spend just about everything you have to be eligible for Medicaid coverage. Which pays for most nursing home care.
Ai-jen – [00:42:12] We’ve really backed working class people into a corner to having to impoverish themselves in order to get access to care through Medicaid.42:22
That’s Ai-jen Poo. Ai-jen directs the National Domestic Workers Alliance, and Co-Directs Caring Across Generations, which advocates for comprehensive long term care policy.
Ai-jen – 42:23 – On top of that we have all of these people in the middle who are not eligible for Medicaid and cannot afford to pay out of pocket for care. [00:42:32]
Ai-jen – [00:16:38] We really don’t have a plan as a country for how we’re going to support this large and growing older population to live well to live with dignity to live in a way that is integrated with the rest of our culture and economic life in this country. 16:54
Mindy – And what about the quality of care in nursing homes? Most nursing homes – 70% – are operated by for profit entities. They typically have much lower staffing levels than nonprofit facilities like the Jewish Home. That keeps labor costs down and increases profits. But studies show the result is often poorer care. And when residents aren’t getting enough attention and quality care, there’s an increase in the number of falls and pressure sores…. possibly even mistreatment. If you have a loved one in an institutional setting …. worrying about these kinds of things can keep you up at night!
Mindy – We experience these as personal issues, but they are actually policy issues! I called Senator Bob Casey, Democrat of Pennsylvania. He’s the Chair of the US Senate Special Committee on Aging. And he’s cosponsored a number of bills to address this crisis in long term care. Including the Nursing Home Improvement and Accountability Act in August of 2021.
It would penalize nursing homes that report falsely inflated staffing levels.
Casey – [00:18:42] I’ve always been been in the camp of saying nursing homes have to be held to a higher standard than they often are.
Mindy – The bill would also require nursing homes to increase staff. And at least temporarily increase Medicaid funding, to help nursing homes raise wages.
Casey – We can’t just finger point and preach and prosecute, so to speak. We have to give them resources and I’m in the expand Medicaid program [00:19:08]
Mindy – But it doesn’t look like that will happen anytime soon. The bill is languishing in committee. Most Democrats support it. Republicans do not.
Casey -07:15 – Once you get into the realm of this reform requires new funding, meaning Medicaid dollars. That’s where it becomes a one party exercise. 17:23.
SHORT music/beat…
Mindy – When Rose Santili came down with Covid in the first wave of the pandemic in 2020, she was terribly sick, but she managed to pull through. BUT it took a toll. Paula says it takes Rose longer now to process her thoughts.
Paula – [00:46:41] Just having a simple conversation now is slow going and frustrating to her. Things like that makes her just like, oh, can can we just be done with this life already? But it doesn’t mean she’s, you know. I’m just proud of her that it’s a different experience of just giving up on yourself rather than just just knowing that my time will come and when it comes, I’m ready. [00:47:17].
Mindy – [00:47:18] So you feel like she’s accepting? [00:47:19][1.0]
Paula – [00:47:20] Yes, she is. [00:47:21][0.6]
Mindy – [00:47:22] Yeah. [00:47:22]
Mindy – [00:47:22] How about you? What what is that like for you? Just watching this woman that you so deeply care about declining and, you know, she’s going to be gone or going home or whatever? [00:47:32]
Paula – [00:49:19] We’re going through the dying process rather than if we had if I had of lost out during the corona that might have hurt me more. [00:49:30]
Mindy – The first time Paula experienced death was when her uncle passed away. She says her family was distraught.
Paula – [00:47:49] Mindy, they made it scary, screaming and hollering, and it was an awful experience as a five year old. But coming into the business, taking care of the elders, I had to experience death because that’s who we are. [00:48:15]
Paula – [00:48:16] We go through the dying process with long term care. 48:22
Paula – 48:22 – I also am the person who wash you up as you expire. I’m also the person that zips you up as you expire. [00:48:35]
Paula – [00:48:35] So for me. Now, it’s part of the natural dying process for me. [00:48:45]
Paula – [00:50:19] The natural dying process is more humbling than it is a scary time. [00:50:27][8.6]
(pause)
Paula – [00:50:29] You’ll miss you’ll miss the person that you’re taking care of. [00:50:32]
Paula – [00:50:33] But up until just yesterday, we looked at each other. Every day we leave each other, we say, I love you. We say thank you. And we know that we said all that we had to say to each other, because we do it every single day. [00:50:55]
Music…
Mindy –A couple of months after I spoke with Paula about dying, I learned that Rose had passed away.
So I called Paula, to find out what Rose’s last days were like…
Paula – [00:04:14] Rose was very, very happy because she was just surrounded with everyone that she loved every single day. It was not a moment that went by that she wasn’t surrounded with the love. So her daughter, her son, her grandchildren, they all got to visit her. 04:34
Paula – 04:48 – it was just like visiting her in her living room and filling her life with stories present and past and enjoying one another. [00:05:04]
Mindy – Even though she lived at the Jewish Home, Rose was Catholic. And Paula says Rose’s son arranged for a priest he knew from college to come bless her.
Paula – 06:44 – She wouldn’t dare leave this earth without seeing Father Tom. So when she saw him, she mustered up all her energy to laugh and talk and enjoy. And remember, she was down to a whisper with talking. 06:57
Paula – [00:07:28] She said, Wait a minute, I’m supposed to be dead by now. And she put one big laugh on. It was so good. [00:07:35]
Mindy – Rose was always into fashion and looking good. Paula kept this in mind, even through the end…
Paula – [00:07:51] I made sure she was dolled up from head to toe. She just looked like, you know, like she was sleeping. 07:59
Paula – [00:08:51] I would say to her, Rose, you don’t have to be sick to go to heaven. You can just close your eyes. I always said to her, how are you doing today? You know, we’re here. We’re just going to make you comfortable. Remember, you’re never alone. You know, we’re always here for you. And I promised her when when your time comes, you’re going to go just like a sleeping beauty. And sure enough, God allowed that promise to take pass. He allowed that promise to take pass. [00:09:40]
Mindy – After Rose died, I received a note from her daughter, Diane. She wrote: “I know she’s at peace with my Dad rocking her high heels again and having her one Manhattan before dinner.”
Diane told me she’s eternally grateful for Paula’s loving care.
Diane – [00:31:44] I just think she’s remarkable. I don’t have never known anybody like Paula. And I know I never will again know somebody like Paula. [00:31:51]
(pause)
Andrew – [01:08:19] There’s a term in the industry that sometimes I like and sometimes I don’t, which is called a good death.
Mindy – This is Andrew Banoff again, the CEO of the Jewish Home, where Rose lived for the last three years of her life.
And when you’re at that point and you’re able to process it and talk about it and be ready for it. [01:08:30]
There can be a good death, right? You know, it’s never a happy ending, no matter what. But you can have a good death if you’re prepared and your family is prepared and and sometimes it’s OK. [01:08:48]
Mindy- Andrew tells me a story. About a resident named Dave Davies.
Andrew – [00:13:54] He was one hundred when I met him, and you would never know it. He was completely sharp as a tack and other than a raspy voice from a from a throat cancer in his early 90s, he was pretty remarkable. 14:09
Mindy – Andrew and Dave became friends. Andrew even took Dave to a casino for his 104th birthday.
Andrew – we would joke with everybody. How old do you think he is? And people would usually say in eighties or maybe nineties and and he would proudly say, I’m a hundred and four. [00:16:26]
Beat…
Mindy – Dave was nearly 105 when he died.
Andrew – [00:19:13] The staff knew I was very close with him and they called me in my office and said, Dave is passing away. You may want to come over to say goodbye to him. He’s nonresponsive. So came next to him and I held his hand and I was talking to him and he was nonresponsive. Eyes closed, the whole thing. They were getting ready to call the doctor to pronounce him. [00:19:35][22.3]
Andrew – [00:19:36] And he opened his eyes and says, Where have you been? (laughter). Dude are you kidding me? [00:19:38][2.2]
Andrew – [00:19:45] And with that raspy voice, I haven’t seen you in a while. [00:19:47]
Andrew – [00:19:49] If you wanted to see me, you could call. You don’t have to make believe you’re dead. [00:19:53]
Mindy: [00:19:55] So you made a joke with him right there? [00:19:57]
[00:19:58] Absolutely. [00:19:58]
[00:19:59] And did he laugh? [00:19:59][0.5]
[00:20:00] He did. The staff didn’t laugh. They were ready to kill him. [00:20:02]
(pause)
Mindy – Growing up, my Orthodox Jewish grandparents brought the family together every Sunday for brunch – bagels and lox, and delicious honey cake that my grandmother baked. We were a large family. And my voice got drowned out by all my aunts and uncles gossiping, debating politics, cracking jokes. What I didn’t realize at the time was that this cacophony of sound was cementing lifelong bonds.
When one of my uncles ended up a nursing home in Buffalo New York, my father visited him every day. After my uncle died, my father told me he’d NEVER go to that place. So when my dad was 96 and needed more intensive care, we honored his feelings. We found a high-quality assisted living facility. Where he had his own “Paula. Her name was Barbara. And she called herself his protector. She was attentive, and intuitively knew what he needed.
We all deserve loving care when we need it. But it won’t happen without increased resources for long term care, particularly through government programs like Medicaid and Medicare. And the resources won’t come without political leadership and the will to create change.
I asked Senator Bob Casey what it takes to convince members of Congress that these are critical issues.
Pause…
Mindy – [00:14:07] Does it mean that they have to experience the problem with caregiving in this country through their own parents having problems? You know, what do you think? [00:14:19]
Casey – [00:14:22] Well, sometimes it sometimes it does take a personal experience, but often, as you know and I think some people are in disbelief about this because they think that Washington has become so detached and cynical. But but constituents bring these issues to our attention all the time. That that has a that has an impact, I think, on members and in both parties, in both houses. [00:14:48]
Mindy – This resonates with my own experience when I worked on childcare issues for a Massachusetts senator. That’s where I discovered that despite the importance of care work, the people providing that care earn low wages, which leads to high turnover, which affects the quality of care provided. I learned that it takes a movement to create change… And that’s what’s needed when it comes to long term care too, says Alex Spanko. He’s with the Greenhouse Project, which supports alternatives to traditional nursing home care.
Alex – If people rise up and say there’s no way I’m going to nursing home ever, and they put pressure on the industry and pressure on lawmakers to change, then there might be something there. [00:35:15]
Mindy – I think Alex is on to something. As we consider the future for ourselves and our loved ones, what kind of care system do WE want?
If we don’t want to spend our last years in substandard institutional care… it’s time that we raise our voices to demand change.
Music/beat
Mindy – This is the final episode for this season of The Shape of Care. I’m hoping to be back with some bonus episodes.
In the meantime, you can have a voice in what’s going on. As we heard a few minutes ago, it will take political action to improve the caregiving industry (or something like that). Your voice really does matter. I’ve seen it happen. So take a minute to learn more about legislation we’ve talked about in this episode. And check out our show notes for some of the exciting advocacy efforts to create a better, more responsive care system! Consider ways you can get involved. It’s all on the website – the-shape-of-care.org.
I’d love to hear what you make of this series. Or if you’d like to get involved, let’s talk. 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@theshape-of-care-podcast-dot-org-slash-donate. That’s contact@theshape-of-care-podcast-dot-org-slash-donate.
You can discover more about our show, connect with us on Facebook, Twitter and Instagram @the-shape-of-care. And when you go on our website – you can find out more about the people we’ve interviewed for each episode, and you’ll see lots of caregiving resources. AGAIN, IT’S 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 Isabel Hibbert 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 the creator of this podcast, Mindy Fried.
Theme Music fades out