If you thought soap legend Susan Lucci was one tough cookie, you should meet her mother. Jeanette Lucci is 103 years old, a former OR nurse who doted on her daughter, lived through World War II, and is still kicking in an assisted living facility in Florida. While Lucci lives in New York, she and her mother have had access to remote visitations so that Lucci can check in on her mother amid a pandemic that’s most greatly affecting the elderly. “I know that my mother is in good hands,” Lucci says. “And I’m able to call my mother numerous times during the week to check in on her health, to have some good conversations, and to remind her when The Voice was on—my mother has always liked Blake Shelton.”
But Lucci knows that not every facility has the same resources. That’s why she’s partnered with AARP on its campaign to bring attention to the crisis American nursing homes are facing in the time of COVID-19. With 1.3 million Americans living in nursing homes and approximately 30,000 nursing home residents having died as a result of COVID-19, the AARP has in recent weeks turned a large part of its focus to addressing the urgency of these issues.
“We’ve been working directly with nursing homes,” says AARP CEO Jo Ann Jenkins. “And we’ve also been pursuing it at a national and gubernatorial level, getting states and the national government to pass laws that establish greater standard of care that everyone should have available to them if they’re in a nursing home.” Such standards of care include adequate access to personal protective equipment (PPE) for staff, remote visitation capabilities, and a free flow of information to those whose loved ones are quarantined in a care facility. (The organization has also provided informational resources about COVID-19 for families and caregivers.)
Last week, Lucci joined Jenkins and a panel of experts for a tele-town hall about nursing homes. More than 100,000 people called in to ask questions or just listen in, and it’s a program they’ve been replicating on a statewide level across the country to arm the AARP’s 38 million members with the tools and information they need to advocate for themselves and each other.
Here, Lucci and Jenkins come together again to speak exclusively with BAZAAR.com about the questions everyone with a parent in a nursing home should ask, the most striking stories they’ve heard during their tele-town halls, and, yes, what the Lucci family’s secret is to living past 100.
What has been the biggest takeaway from the AARP’s tele-town halls?
Jo Ann Jenkins: I think that the 50-plus are a group of fighters. They’re advocates for themselves, they want to get engaged. But I think what I’ve been surprised about is the sheer volume of people who have been calling in to the tele-town hall meetings. Some of them are living or isolating alone, and they want to have a conversation and to make sure that they’re not the only ones experiencing this. What’s stuck out to me is how many people feel they need more information and reassurance, the anxiety and fear that I hear in some of the callers’ voices. They want to share their stories and make sure that they’re being listened to. And so we’ve been replicating tele-town halls at the state office level. I think we’ve held close to 250 tele-town halls in the last two and a half months. And that’s what AARP is built for—to advocate not only in Washington and in the state legislatures, but to touch our members at the personal level, at the local level, to connect and try to share wisdom.
Susan, how did you get involved with the AARP’s tele-town halls?
Susan Lucci: I feel so proud to partner with Jo Ann and AARP to help in shining a light on this problem in nursing homes, so I have to begin by saying how impressed I am with Jo Ann and her advocacy and what AARP is doing to provide practical solutions. And I love that in addition to that practical aspect, they’re also simply letting people know they’re not alone. Especially in this time of COVID-19 isolation, that’s a huge challenge that many, many people are feeling.
My mother and I have always had a wonderful relationship. She is 103, and she was part of the greatest generation. I never wanted to be the daughter who dragged my mother kicking and screaming out of her home to an assisted living facility. My mother lived on her own until she was 98, and she was very capable and she loved living on her own. That was her wish. We hired nurses to be with her 24/7. But my mother is so spunky and she fired everybody we hired.
Fortunately, Mary, the daughter of her good friend, is a geriatric nurse, and spectacular one, not to mention a great human being. My mother trusted her and let her into her life. And that was a godsend for both my mother and for me, because my mother lives in Florida and I live in New York. But as 98, my mother had a couple of falls, two of them pretty serious—she broke the same hip twice. It became best for her medical health that my mother really shouldn’t live on her own anymore. Mary put me in touch with the wonderful assisted living program in Florida. Now I’m lucky to have my mother in a facility where I can speak to her several times a week on camera, so she sees me and I see her. But my story is different than the ones we heard, and I want to help make sure everyone gets the kind of care my mother has.
It’s heartbreaking to hear of the numbers of people in nursing homes, who are among our most vulnerable citizens, who are dying alone sometimes without their loved ones even being informed. I hope we just find a better way forward. And listening to the stories of loss over the last couple of days really made me understand the importance of the six questions that I know Jo Ann and AARP provide to people with loved ones in nursing homes. She can talk about that in more detail, but it all comes down to compassionate care.
Jo Ann, what are the six questions you encourage people to ask of the nursing homes their loved ones live in?
JJ: We say that everyone should be able to answer these six questions: Has anyone in your nursing home tested positive for COVID-19, whether it’s frontline staff or one of the patients? What are they doing to prevent infection and the spread of the disease? Is the facility at full staffing levels for nurses, aides, and other workers so that residents’ needs can be met? Does all that staff have the proper PPE equipment? What is the plan for the nursing home to communicate important information to both residents and families on a regular basis? What is the nursing home doing to help residents stay connected with their family or loved ones—by phone, by Skype, by accommodating virtual visits with new technology?
On that last point—one of the things we’ve been trying to do is get the tech community involved to donate equipment and services. How do we create that transparent flow of information, not only to the patients, but also to their family members, and to the local health professionals who are tracking this information? Imagine if you have a loved one in a nursing home and you haven’t seen them in a couple of months because of quarantine and lack of remote communication, and then they unfortunately die. You’ve missed your last opportunity to tell them that you love them and that they’re cared for. What a tragic loss, when we can have such simple technology that can help facilitate these kinds of conversations. And I think that’s what we heard loud and clear from our members—the need for information and constant communication to keep them informed and involved in what happens with their loved ones.
Why have so many facilities limited or failed to provide this kind of access or information?
JJ: This COVID-19 pandemic has caught people off guard with capacity and workload issues. It’s not that nursing homes don’t want to allow remote communication, I really think it’s that they don’t have the capacity or the equipment, which is so critical. We heard from a woman from Utah [at the tele-town hall] whose, I believe, mother-in-law was in a nursing home. They were communicating regularly by phone and with the staff. And then all of a sudden the communications stopped. And then she heard that her mother-in-law had died through a television news report.
Susan, as you advocate for your mother and others like her, can you remember a time when she advocated for you?
SL: What comes to my mind immediately is when I was 19, I was with my boyfriend at the time, driving on the expressway into the city on a Saturday night. The car in front of us stopped short, we crashed into it, and I went through the windshield. The police came to the accident site shining their flashlights, and I could overhear them talk about me sort of like I was in the past tense. So I knew that something serious had happened. The ambulance took me to the closest hospital right off the expressway. Because it was a Saturday night, the emergency room was very crowded. The nurse said to me, “Oh, it’s okay, honey. I’m sure he’ll still marry you.” I think she meant to be comforting … . So I could gather that I was pretty banged up!
My parents arrived as the doctor was threading the needle to sew me up, but my mother was an OR nurse, and when she took one look at me, she could tell that I still needed some more attention. My parents insisted that they take me to another hospital near where we lived, which they did. I wound up being on the emergency operating table for four and a half hours while the surgeon took glass out of the gash above my eye. Had they not done that, had even one little sliver been left in there and could travel, I could have lost my eye. Through all of it, my mother never took her eyes off me. You don’t forget that. You just don’t forget.
Speaking of advocating for others, Jo Ann, what do you think the next steps are for advocating for vulnerable older populations beyond this COVID-19 crisis?
JJ: We’ve been working on nursing home issues throughout our 60-year history, and we’re often out there talking about the importance of long-term care and care facilities. But over 85 percent of our members have also said, even before COVID-19, that they want to age in their own home. And that shows how important it is for people to have access to health insurance so they can make these decisions and afford the care that works for them. I think what COVID-19 did was bring to the forefront how critical it is that every American have health insurance and for us to think about Medicare and Medicaid in a new way. And so this actually gives us an opportunity to think about how could we make that possible and what adjustments or changes we might need to see in our health care system. We know that aging at home is not the right solution for everyone. There are many people for whom a nursing home is the right solution.
Susan, we have to ask: What is your mother’s secret to living to 103 and beyond?
SL: I think my mother would tell you it’s because she grew up in the Pocono Mountains and drank a lot of milk. I have very fond memories of watching my mother eat butter pecan ice cream right out of the container. My mother is part of the greatest generation, and so I think she has that strength and resilience and can-do attitude. But she’s also an eccentric spirit, and I think that’s a lot of it too—not taking things too, too seriously has allowed her to roll with the punches, and I admire that very much.
This interview has been edited and condensed for clarity.
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