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May 21 AARP Coronavirus Tele-Town Halls

Experts share information about COVID-19 and how to protect yourself

SPECIAL CORONAVIRUS  Tele-Town Hall May 21, 2020, 1 p.m. 

Michelle Kosinski: Hello everyone. I‘m Michelle Kosinski and on behalf of AARP, I want to welcome you to this important discussion about the coronavirus. AARP, a nonprofit, nonpartisan member organization, has been working to promote the health and well-being of older Americans for more than 60 years. In the face of the global coronavirus pandemic, AARP is providing information and resources and fighting for older adults and those who are caring for them. Today we are going to talk with two special guests. We have Emmy award-winning actress Susan Lucci, and AARP CEO Jo Ann Jenkins, about the impact, which is large of a global coronavirus pandemic in nursing home, assisted living and skilled nursing facilities.

            If you‘ve participated in one of our tele-town halls before, you know this is similar to a radio talk show, so you can ask questions live. If you would like to ask your question, just press *3 on your telephone to be connected with an AARP staff member who will take your question and then place you in queue so that you can ask your question live. To ask your question please press *3, and for those of you who are listening to this on Facebook or YouTube, which is great, you can also post your questions there in the comments section.

            For those who are just joining now, again, I‘m Michelle Kosinski and I want to welcome you to this important AARP discussion about the impact of the global coronavirus pandemic. We‘re joined for this very special event by Susan Lucci, Emmy award-winning actress and New York Times best-selling author; and Jo Ann Jenkins, chief executive officer of AARP. Later on, we‘ll also hear from two experts to help answer your questions: Lori Smetanka, executive director of the National Consumer Voice for Quality Long-Term Care; and Bill Sweeney, senior vice president of government affairs for AARP. We‘re also going to be joined by AARP‘s Jean Setzfand. Jean will be our organizer and help facilitate your calls today.

            AARP is convening this tele-town hall to help you access information about the coronavirus. While AARP sees an important role in providing information and advocacy related to the coronavirus, we also want you to know that the best source of health and medical information is, of course, the Centers for Disease Control and Prevention, the CDC. It can be reached at cdc.gov/coronavirus. This event is being recorded also, so you can access the recording at aarp.org/coronavirus just 24 hours after we wrap up.

            So now let’s get to our special guests. Susan Lucci is an Emmy award-winning actress and New York Times best-selling author who is best known for portraying the iconic Erica Kane on the ABC daytime drama All My Children from 1970 to 2011. Who doesn’t know Susan Lucci, really? She has also appeared on popular television shows, Hot in Cleveland, Lifetime’s Devious Maids, and ABC’s Dancing with the Stars. She’s been called daytime’s leading lady by TV Guide, the New York Times and the Los Angeles Times, and will be featured in ABC’s upcoming special The Story of Soaps, premiering on May 19th of this year. She’s also the 2020 Ambassador for the American Heart Association’s Go Red for Women movement that raises awareness for women’s cardiac health.

            Also, we have Jo Ann Jenkins, the chief executive officer of AARP, where she leads the world’s largest nonprofit, nonpartisan member organization. Since becoming CEO in 2014, she has transformed AARP into a leader in social change dedicated to empowering people to choose how they live and age. Her best-selling book Disrupt Aging: a bold, new path to living your best life at every age has become this signature rallying cry for revolutionizing society’s views on aging by driving a new social consciousness and sparking innovative solutions for all generations. Prior to becoming the CEO of AARP, Jo Ann was president of the AARP Foundation, and she’s also served in numerous high level of roles in government. So I want to thank you both for being here for this important conversation. I think this really highlights how important this subject is.

            Starting off, Susan and Jo Ann, because this is a critical national conversation, I also want to know why you personally wanted to set aside a time for this today. Susan, let’s start with you.

Susan Lucci: Yes, to begin with, I do have my mother, and I know how lucky I am to still have my mother with me, although she is living in an assisted living facility.  I’m in New York and she’s in Florida, but I miss her very, very much. And I, of course, worry like so many people in this country who have a loved one in a nursing home or in an assisted living facility, and I am happy to say that where my mother is a resident, they have been very transparent in communicating. There have been no incidents of any residents having been struck by COVID. And so that, of course, allays my worry. In addition to which they have established a virtual ability to speak to my mother virtually so that I can see my mother when I speak to her and she can see me, and I can hear her and she can, well, she’s lost some of her hearing, but somehow, she can hear me when I’m speaking to her on that screen. And I’m so grateful for them for that. I know that not everyone’s experience is that. And sitting at home like so many Americans and listening to the briefings every day and hearing the numbers of people who have lost loved ones in nursing homes, it’s heartbreaking. And I’m here today because I am so very thankful that Jo Ann and AARP asked me to tell my story to be part of this. You sit home, and you hear the numbers, and you feel so helpless. If in any way, I can be part of this to help AARP shed a light on this very important problem to help our most vulnerable citizens, my mother’s one of them, of course, and I’m grateful for the opportunity.

Michelle Kosinski: Well we are very happy to have you. And Jo Ann, how about you? What made you want to set aside this time?

Jo Ann Jenkins: So I’m first honored that Susan Lucci has agreed to come on and tell her and her mother’s story with this. But I think one of the clear facts is that nearly 1.3 million Americans live in care facilities. And we know as this COVID pandemic has hit us that in some states, half of those people who have lost their lives have lived in some kind of nursing facility. And so it brings to the forefront the importance of looking at nursing facilities, assisted living facilities, and other care facilities to make sure that there is a standard of care across all of these living facilities to make sure that our members and their families have the kind of health care that they need to be able to survive this pandemic and to really begin to thrive, and hopefully, it won’t last too long.

Michelle Kosinski: Well, thank you to both of you for underscoring the importance of this topic. I know it means a lot to everyone out there who’s listening. So let’s begin with some questions. Susan, you mentioned your 103-year-old mother is in a facility, and she had been a nurse prior to becoming a stay-at-home mom. And your entire life, both personally and professionally, has been centered in New York State. How personal was the coronavirus outbreak to you? How did you manage through the most difficult days, especially in late March? And how are you doing today?

Susan Lucci: Thank you. Thank you for asking. Yes, as I said, when COVID-19 broke out, I was very concerned about my mother. The last time we saw my mother in person was the first week in March — March 2nd actually — and we flew home to New York; my mother remained in her assisted living home there in Florida. And by the end of the first week in March, that assisted living had gone into lockdown, complete lockdown, that was in order to protect the residents. They’ve been very successful in that. When the staff comes in to work, they are tested, and they are scanned. And it’s been a very successful program, I’m very happy to say. But, of course, like so many of us who have mothers and fathers in assisted living, we are missing being able to see them, especially if you’re not in the same state. You can’t go outside their window and let them know you’re there. But fortunately in our case, there is a virtual phone call. And so I thank heavens for FaceTime and Zoom and all that we’ve all come to depend on now. I’m just really happy that that exists. And that’s basically what we’re doing now.

Michelle Kosinski: And did I hear you say that there have been no cases of coronavirus in the facility where your mom is? Is that right?

Susan Lucci: That’s right. That’s exactly right.

Michelle Kosinski: That’s incredible.

Susan Lucci: It is incredible, but they, again, I underscore the fact that this is such a fortunate circumstance for us. I know that other such facilities exist, and I say this in a message of hope that people who have loved ones who are going to assisted living or a nursing home are not discouraged to think that it’s only the horrible numbers that we’re hearing. There are some good numbers, too. And I wish that everyone in the future will have access to such good numbers that everyone can share in that. That we can all take care of our most vulnerable, our parents. My mother was part of the Greatest Generation and a really terrific mother. And I know so many of us feel that way about our parents, and we want them to be well taken care of. They took care of us and we want to take care of them. And that’s the goal.

Michelle Kosinski:  I hope that that facility and others like it — that seem to be doing all the right things and taking the right measures and making sure that there’s communication, too — I hope that they’re sharing those methods with other facilities to try to spread the word on what’s working. I think that’s great. And first of all, thanks for sharing your personal side of this. And broadening that out there’ve been so many stirring images out there that we’ve all seen by now of people standing outside nursing homes and assisted living facilities, trying in any way they can to stay connected with their loved ones, holding up signs and waving through the windows. It really grabs your heart. Is there any one moment that resonates with you personally?

Susan Lucci: I have to agree with you. It grabs your heart. And I so wish that I could be one of those people standing outside the window of where my mother is. I can’t be; we’re here in New York. We can’t travel. She can’t travel. She’s there. We’re here. They’re in lockdown. Even if we were there … but we could, you know, go by the window. Actually, the Sunday before Mother’s Day, the assisted living facility that my mom is in had a parade. People who were there could stage a parade. The residents would be inside, and they could see out. And they asked people if they wanted to decorate their cars, or if there could be balloons and signs, and people did. Fortunately, I have friends and a nurse who I call on to accompany my mother to medical appointments that she has to go to apart from the facility — and I was able to call on her and she’s so, so good. But I see so much of such kindness, such kindness and skill. And the nurse that I called on, it was actually her day off, but she chose to take her car and go there with balloons for my mom and hold up a sign, and I know that put a smile on my mother’s face because that’s a familiar face, that’s someone who has spent time with my mother. It couldn’t be me, but it could be someone very kind, and someone who has a great relationship with my mother as well.

Michelle Kosinski: And I love finding out that your mother had been a nurse. So I want to know with all of this happening around her and now she is the one being helped by medical staff and being around them, what does she think about the pandemic and going through this? And she lived through the Spanish flu pandemic as well.

Susan Lucci: My mother was born in 1917 and, yes, I guess as a baby she went through that and then the Depression and then World War II. That’s a very ...

Michelle Kosinski: Yeah, it is a lot.

Susan Lucci: ... healthy and resilient generation. And my mother is that. I haven’t spoken to my mother about the pandemic. I’m not sure that my mother really is totally informed about that, nor does she need to be, but she’s very, very happy to speak to us and to see us. And having been a nurse, when we’ve been there, or when I call sometimes at night, my mother will have … she had a couple of falls and the first time she recovered in 10 weeks; she thought … she had a quick recovery because she grew up in the Pocono Mountains and she drank a lot of milk and she ate a lot of ice cream. So this was, this was great. But the second time, she recovered mostly, but she had to be on a walker, although she was still wearing her leopard kitten heels, on her walker that she ...

Michelle Kosinski: Yes, yes. That’s my kind of girl. That’ll be me.

Susan Lucci: Mine, too. Absolutely. But when we would go and visit, sometimes we would find her at the nurses’ station. That’s where she would gravitate to. She loves to talk to people and she is very charming, and she would just find her way to the nurses’ station on her walker, in her leopard kitten heels, and talk a lot to the nurses. And they are wonderful to her — and not just to her. I see how wonderful they are with each of the residents. And I’m just so grateful for their kindness and their skill and their humor, their sense of humor.

Michelle Kosinski: So looking ahead, what are your hopes and goals on the other side of this pandemic? Whenever we have more clarity and a better sense of safety, how do you want to live your life? And also, we want to hear what have you gained as well as missed the most during this time.

Susan Lucci: I think like most of us, we want to get out and see our family and our friends and be together in person, even if it’s with masks. That’s OK. And if we are out to dinner, we can just lift that mask up and take a bite, put it back down. But we can talk to each other or we can still be with each other. And I would love to be able to do that. I’d love to see my family. Love to get on a plane, go see my mom. And we, I’ve got to tell you that we gained a new baby granddaughter during this time.

Michelle Kosinski: Oh, congratulations.

Susan Lucci: Thank you. Such a beautiful baby. She was born at the height of the epidemic in New York City. She was born in April, the beginning of April. And I will say that our daughter-in-law has been a rock star in all of this, and the baby is doing so well, and she’s beautiful. But we haven’t met her in person. So we both lost and gained there; we gained much more and thank heavens for FaceTime. But I really look forward to seeing her. I’m meeting her in person when this is all past.

Michelle Kosinski: That is wonderful to hear. And Jo Ann, I want to bring you into the conversation again. We were just listening to Susan’s personal story and some of these experiences are just all too familiar right now, so we want to hear from you as to the scope of all this. How vulnerable are nursing homes and assisted living facilities right now during this crisis? How many people are being affected? And tell us more about what AARP is doing to help people who are in nursing homes and their families.

Jo Ann Jenkins: As I said earlier, there are about 1.3 million Americans who live in some type of nursing facility across this country. And we know that roughly 30,000 of the deaths that we’ve seen here in the US have been those who have lived in nursing homes. And so it’s important for us to keep that at the forefront of our conversation. Obviously, these numbers are devastating, and we need to be able to do something to make sure that those who have the authority, whether it be Congress or the Administration or governors or mayors, are really taking this seriously. I think one of the things that we’ve all learned from this is just how important health care is, and how important it is for us to make sure that those who are providing the health care in nursing or assisted living types of facilities have the kind of equipment and access to information that they need.

            I’ve been so proud of AARP and our team, not only here — the advocates who work here in Washington — but those at our state offices, in our 50 state offices and U.S. territories, because they’ve been able to work directly with governors and with mayors and other local elected officials when they’ve reached out to us and in many cases, us reaching out to them to say, this is important. We need you to understand what it is, what’s going on in these nursing facilities. We know that people who enter this profession are really those who want to be able to help. We know that they are there on the front lines of this pandemic stepping up and doing work, and so many of us are grateful to them. But we also need to make sure that we are asking states and the federal government three main issues. First and foremost, I’d put at the top of that list the care facilities. Do they have the kind of PPEs — masks, gloves, gowns, equipment — that they need to be able to protect themselves and to protect the patients who are in those facilities? We need to make sure that the nursing facilities are transparent with the information — which facilities have tested positive, whether it be an employee or someone living as a resident, and just what it is that they’re doing to try to prevent the spread.

            And Susan touched on this last piece. So many of our family members are in these facilities, and some of them have been in there for 30 days, 60 days, and haven’t been able to see or speak with the loved one. So having access to that virtual visit, whether it’s through Skype or Zoom or Microsoft Teams or whatever that device is, for them to be able to see a family member or a loved one, to be able to communicate with them is so important, particularly when this may be, in many cases, unfortunately the last time they get to communicate with one of their loved ones.

            And so we’ve been really pushing out our advocacy work. We’re honored to do this. Our team has been so diligent in going out and reaching out all across this country, trying to push this agenda so that we can have safe health care in these facilities and get our members and their family members the kind of information that they need about those that they love that are in these facilities. We know that there are many with us, and so many of our members have reached out to us and serving as volunteers around the country, trying to continue to get the word out, but it’s an uphill battle and we really want to make sure that everyone who’s in a facility has the kind of treatment, like Susan described, her mom is getting there in Florida. But we know that’s not the case in all situations.

Michelle Kosinski: And if you could assess the situation today across the country with the PPE for staff, what would you say?

Jo Ann Jenkins: I would say that there is still great need for sustainable PPE equipment in some facilities across this country. I think that, in many cases, it’s being left up to the state elected officials who are guiding that. And we know that even in our own surrounding communities, that there are many who are still asking for mask and gowns and gloves and even food being delivered for those who are caring for our family and friends in these nursing facilities. So I still would say we are trending upward, but still a long way to go before we can say everyone has access to the kind of PPE equipment they need and will continue to need in the foreseeable future.

Michelle Kosinski: Got it. And for all of those listening out there, I’m sure you’re coming up with your own questions and you’re thinking of things, information that you need. So as a reminder, if you would like to ask a question live for either Susan or Jo Ann, remember to press *3 on your phone, or if you’re on Facebook or YouTube, you can ask questions in the comments. Also, Jo Ann, I wanted to ask you, we know that so many people out there who are family members just feel helpless, they’re worried, they might be afraid. How can they help their loved ones who are in facilities and what questions do they need to be asking?

Jo Ann Jenkins: We put together six questions that we think that family members need to be able to ask the nursing facilities that their loved ones are in. And it’s available on our website at aarp.org. But just to go over them quickly: The first question you need to be asking is, has anyone in the facility tested positive for COVID-19? That includes patients as well as staff and those people who are providing service to the facility. You want to know, is the nursing home doing any preventative inflections? That is, do they have a plan to stop the spread if in fact someone in the facility has tested positive? That’s important for us to keep track, as we try to prevent the spreading of the virus in the future. What we just talked about … do they have enough PPE equipment like masks and gowns to be able to sustain them over the next 30 days, 60 days to be able to do it? Fourth, I would say, what is the nursing home doing to help families keep in touch with their loved ones right now? Family members are a familiar sight. It gives people energy. It gives them a reason for living, and we need to make sure that the nursing facilities are reaching out to family members and conveying not only what’s happening to our personal loved ones in the facility, but also just giving them that level of comfort to alleviate their anxiety level about what’s going on.

I would say fifth, what is the plan for the nursing home to communicate important information to not only the residents, but also the facilities? In some cases we know of people who are in nursing facilities, who do not know the status of their own facility that they’re in, whether someone has tested positive or not. And then, sixth and lastly, but surely not the least, is the nursing home currently fully staffed? Because it’s so important that we take care of the health care providers who are on the front line fighting these issues every day. And so many of the nursing facilities we know are understaffed, or health care people who are servicing two or three different care facilities. And so that’s important that we have the right level of staffing at these facilities to be able to do that. And then I would just say again that those six questions you can find on aarp.org/nursing homes, should anybody want that information again.

Michelle Kosinski: That’s great. A lot of resources out there. So now we have the great resources of Jo Ann and Susan with us. We want to take some of your questions out there. … Let’s now introduce AARP’s Jean Setzfand to help facilitate all of our calls. Welcome, Jean.

Jean Setzfand: Hi Michelle, glad to be here.

Michelle Kosinski: Glad to see you again, in my mind. So what is our first question out there?

Jean Setzfand: Our first caller is Roxanne from Maryland.

Michelle Kosinski: Great. Hello, Roxanne from Maryland, and I understand you have a question for both Susan and Jo Ann.

Roxanne: Yes, I do. First, I’d like to say that I’m a big fan of Susan’s.

Susan Lucci: Oh, thank you.

Roxanne: You’re welcome. And my question is to both of you. I have a sister right now who’s in long-term care, and she’s in a facility. And it’s really hard for us, and we’re really worried about her. What advice do you have?

Susan Lucci: Well, first of all, when I hear you speak this way, I know what you’re going through and I so sympathize with you, and I really think, if I may say so, that … if the facilities will answer those six questions when you ask them, I think that that would go a long way to allaying your worry. That would be my wish that all across the board, that nursing homes and facilities would come up with these things that Jo Ann is asking the questions about, and act on those. And then we never again would have to sit home and hear these terrible statistics coming at us and being shocked by them and surprised by them and then worrying about our loved ones who are in such facilities. My heart goes out to you. I wonder is there a way for you personally to FaceTime with your sister? Does she have a cell phone? Can you do that?

Michelle Kosinski: I’m sorry. I think our caller can no longer respond.

Jo Ann Jenkins: Let me just say my heartbreaks when I hear the caller voicing concern for someone who’s in a long-term care facility. I will say that the Maryland governor has certainly been very proactive in reaching out to AARP to work with us in trying to guide what should be going on in the state of Maryland. And so we are very pleased with his participation and his very deliberate attention to this. I would absolutely be reaching out directly to the long-term care facility, and demanding that you get answers to those six questions and just asking them for a routine kind of checkup, whether it’s daily or several times a week so that you know what is going on with your loved one. And please know that you are not the only one out there going through this; that we’re all rooting for you and your loved one. And it’s important that we all provide each other the kind of love and support and caring that is so needed in this time of pandemic.

Michelle Kosinski: Jo Ann, what if you’re a member of the community, and you know what people are going through. You care about the facilities in your area. Is there anything that a person in the community could do to help people or staff in these facilities? Like right now if you could say, here’s a way to help, what would that be? If there is a way?

Jo Ann Jenkins: I think one of the things that we keep hearing from our members around the country is really getting support to those frontline workers, whether that be in the area of providing food or servicing or just letting them know that they are appreciated, that we understand how difficult it is, not only for the person who is the patient, but also for the health care workers who are experiencing this high level of stress and anxiety and workload on a daily basis. You see average everyday citizens and neighbors sewing masks and bringing additional kind of PPE equipment, homemade or either purchased, to these facilities. And as you said, when you live in an area, in a neighborhood, you get to know those facilities, whether you have someone in there or not. And so many of our other local nonprofits and volunteers are reaching out directly to these health care facilities to provide additional help and actually extra hands for the kind of things that they need to do on a daily basis.

Michelle Kosinski: Good to know. Jean, let’s go to our next caller.

Jean Setzfand: Right. We have a Jenny from Illinois.

Michelle Kosinski: Hello, Jenny.

Jenny: Hi everyone. Thank you so much for this valuable information. First and foremost, I want to say: Susan, huge fan. My mom had me sitting in front of television … when I was very young watching you on All My Children. I’ve seen you in different movies and commercials and though I know that those are only personas of yours, I will say what has stuck out to me over the years is that your elegance and grace seem to transcend all of the different roles that I saw you in. What do you recommend for people on how to age gracefully, such as you, especially now that you’re going through this with your mother and many of us also are in this position. And so how, what can you help us; what guidance can you give us to live a good life and have those great abilities that you have, to age gracefully and stay optimistic during a really challenging time.

Susan Lucci: First of all, what a lovely compliment you give me. Thank you very, very much. It sounds to me from the questions you’re asking and the way you’re asking that you’re already on to something. You’re talking about staying optimistic. I think … that’s the best you can. I think keeping up with your routine so that your total wellness is being taken care of, then you’re better able to care for loved ones, whether they’re children you’re still raising or your loved one who’s older and most vulnerable. It helps to keep a clear mind. And as I said, that total wellness can help you, of course, but can only help you help those you love even more. I think you’re already on to something. I think you know, all about kindness and gratitude and … whatever really can bring out the best and to keep you feeling calm and in your best frame of mind can help.

Michelle Kosinski: Lovely advice. Thank you. Jean, are there other callers?

Jean Setzfand: Yes. We have Deanna from Utah.

Michelle Kosinski: Hi, Deanna from Utah. Welcome.

Deanna: Hi. Thank you. I’m new to your forum and really to your group, so I appreciate the chance.

Michelle Kosinski: We’re happy to have you.

Deanna: I actually, I ended up … I ended up on the news here locally, over this very same topic that you’re talking about today. In Utah, my stepmom was number 8 to die of the virus, and she died on April 2nd. And she’s been in, was living in a nursing home. And we, the family, never, we ... I don’t know, Utah’s dragging a little bit behind, so our numbers are at now a little bit more, but this was pretty new to us. And we, although the nursing home had been very forthcoming and open with us for a while, suddenly they stopped being open with us. And they never told us that she, that my stepmom had the virus or that she died of the virus. And, in fact, told us that she died of natural causes. And to the point where it was really … we learned about her death, we figured it out, watching the news. Yeah, because she was the only one that was 85. And the state had reported the 8th death being from a nursing home in that area. And so when we put pushed further, we found out that even the funeral home that came to get her body, they had to go through a locked gate, and even they were not told that she had the virus and had died of the virus. And neither had, and they didn’t even, and I don’t know why, but not a lot of precautions were taken at that point. And it was kind of a tricky situation because some of our families work in nursing homes and other nursing homes and so it was, it was a very hot topic for a while. In fact, the local news drove up to my house and asked me for an interview as soon as they heard about it, and it’s been on our news several different nights as the leading story because of the transparency I’ve asked for and that we obviously need. And I don’t know what kind of regulations are, were in effect at that point … They’ve talked about new ones and more being in place, and just listening to you guys talk is exactly what I asked everybody on the news. Everybody listening to ask the nursing homes where they were, had loved ones … to ask them, what way were they going to communicate this with people? Especially if things got going crazy fast and how to find out how they were going to find, how they were going to let them know. And among other things, among the other things that you were mentioning. So my question is … I don’t even know what my question is.

Jo Ann Jenkins: Deanna … thank you so much for sharing your story. I think the strength that you were showing by coming out and sharing with others and what you and your family have gone through is … as unfortunate as it is, you telling your story is so helpful to everyone else. And I think one of the things that you hear in Deanna’s story is the underrepresentation of those who have died with this virus that’s either being reported as death of natural causes or are capturing some other kind of death cause because of someone’s age. And I think that is so important. That’s what we say when we get to the issue of transparency, and sharing of information. To think that Deanna’s [stepmom] would die, and then they would hear about it on the news, is just unacceptable.

            And I think what we’re trying to do at AARP is to empower all of you out there who are listening to demand better from your elected officials, and for us to all be in this fight together to make sure that we have access to the information, access to our loved ones, and really, are all working together to make sure that state and local and national governments are really making these nursing facilities share the information that they have at the point and time that they receive the information.

Susan Lucci: I’m so sorry that you went through this. This is just horrendous and that they weren’t transparent with you while it was going on. You said that they were fine in the beginning and then they stopped communicating. I don’t, I know they probably, maybe they got overwhelmed. I don’t know. Jo Ann, maybe you can answer this. Do they have to ask for more, more staffing as well? That doesn’t make any sense that you wouldn’t communicate when you started communicating. And who oversees this, and what can you do? How can you make them tell you the truth so that you have a chance to deal with it with as much humanity as you can?

Jo Ann Jenkins:  Susan, those questions are really, I think, what’s at the forefront of this. You have to remember that we’re all experiencing this pandemic at the same time, and there really isn’t a playbook for us to go by. But I think the more transparent that the nursing facilities can be in sharing information, the more helpful it is to the individual family members and to those administrators who are in charge of the facilities as well, not only at the direct level with the facility, but also at the state level to be able to go through on this. It’s so sad, and it just breaks my heart that Deanna and her family had to go through this. But this is a typical situation that we’re hearing from my members all across this country.

Susan Lucci: And that’s what we hope doesn’t become typical going forward. We have to end that being typical. I think Deanna, you going on the news and being honest and you being transparent with what’s happened, hopefully will already make those that can make a difference stand up and take notice and change things going forward. I know it doesn’t help you in your situation. You’ve been through this and can’t change that, but please know that you’re getting out there on the news and telling your story, I hope, in the state of Utah is going to help people. Help change things going forward.

Deanna: Yeah, I’m sure it will.

Michelle Kosinski: And Jo Ann, are there laws at the state level that dictate what kind of transparency these facilities need to be providing to families?

Jo Ann Jenkins: So there are, but it’s not in the level of detail because quite frankly, we haven’t had this kind of pandemic or really assault on nursing homes with these incoming patients at the level that we’ve had in the past. And I think that you see many governors and mayors really trying to put in place, in many cases, laws and guidelines that didn’t exist before. And there’s a lot of learning as we go, and unfortunately, not all of the nursing homes are delivering the service in the same way, either because of lack of funding or a lack of equipment or a lack of staffing. And that’s why we try to get back to those six points … we should make sure that there is a standard of care regardless of where you live, whether you’re in the city or in a rural community; regardless of your income level; regardless of your race or religion; or that everyone has access to the same quality of care all across this country.

Michelle Kosinski: Thanks Jo Ann, and both of you, I know we could talk to you all day about this subject since it is so important, as well as so emotional to our families. Do you have time for one more question?

Jo Ann Jenkins: Sure.

Michelle Kosinski: OK, great. Jean, let’s go to our next questioner.

Susan Lucci: Before we go further, I just want to ask Jo Ann, those six questions, which are so, so important. Are they available on your website? Is that the place that people can go?

Jo Ann Jenkins: Yes, it’s aarp.org. They can go right there and get access to those questions.

Susan Lucci: That’s great. So if enough people across this country are asking those questions, hopefully things can change. Hopefully, they can go forward and change for the better.

Michelle Kosinski: Let’s go to Jean.

Jean Setzfand: Thank you. So we have one question coming in from YouTube, and this one’s going to both Susan and Jo Ann. The question reads as this: “Has anyone successfully gotten a facility to access an Amazon Echo show device where you can see and talk to a loved one independently? We can’t seem to connect by technology with my mother.” This is Tina from YouTube. So I think broadening that out a little bit, Susan, what’s been your experience with your mom? And then, Jo Ann, what are your thoughts in terms of technology and facilities?

Susan Lucci: Yes. Usually what I do is contact the nurse who let me know that such an ability was there; that I could call my mother virtually. And we arrange a time because my mother is not the only resident and there are other loved ones who want to speak to their loved ones. So I arrange a time, and then they actually call me. They call me FaceTime, but it’s on my mother is full screen, and we can speak to her that way. And even having a parent in such a facility, the ability to see them and for them to see you and hear their voice and they can hear yours is so important. And so my heart just goes out to our callers who haven’t been able to speak to their loved ones, especially when everyone was in such turmoil and this COVID-19 was affecting them.

Jo Ann Jenkins: And to answer the question, actually AARP Foundation is working on a number of pilots using technology in nursing facilities, and providing free technology to the nursing facility and training of staff so that people in the facility have access if they are physically capable of doing it or assisted by someone in the nursing home to be able to connect with those. And we have actively been engaged with some of the major technology partners around the country to ask, in fact, if they would be willing to provide some of these devices free to the nursing homes to be able to do this. I think that’s so important. And I think the technology community would certainly try to step up to the plate to be able to do those, particularly those in underserved communities.

            I also just wanted to mention, because you hear in the voices of some of the callers who are calling in, this issue of anxiety and perhaps isolation, one of the things that we think is so important. And we’ve set up really two vehicles to try to alleviate some of this; one is our AARP Community Connections. If you type into whatever browser AARP Community Connections, you can go there. And we have set up over 700 what we call mutual aid groups of people in community helping each other, particularly those who have older members in their families.

            And then we also have AARP Friendly Voices. And this is, perhaps you just need to talk with someone, or you know someone who would benefit by having a friendly voice call them and just talk with them and check on them to see. One of the things we’re realizing is there are so many people who are isolated in this country, and while we are self-isolating during this pandemic, there are many people all across this country who have been isolated for long periods of time. We see this as a way for us to check on our neighbors. So if you want to be someone who gets a call, or you want to be someone who calls someone, you can go to AARP Friendly Voices and sign up to be on either end of that communication.

Michelle Kosinski: That’s such great information, both of you. I can’t thank you enough for doing this, and I want to thank everybody for calling in with their great questions. And we’re going to get to more questions soon, but I know both Susan and Jo Ann need to leave, so before each of you head out — and we bring in our next guest — do you have any closing thoughts you want to share? Susan, want to start with you?

Susan Lucci: I would just like to say how really impressed I am with the things that Jo Ann and AARP, under her direction, are doing. Really concrete answers to the questions and things that people can actually do to try to help the situation going forward. Jo Ann, I’m so thrilled to be part of this process with you, a small part. What you’re doing is so important, and I’m so happy to be part of this. And thank you for asking me to join you.

Jo Ann Jenkins: Thank you, Susan. And I just wanted to extend my thanks for Susan sharing her story with her mother and her family, and congratulations on your new grandchild. That’s so exciting. And to all of our members out there, we at AARP want you to know that we consider it an honor to be that fierce defender for you, whether it’s here in Washington or perhaps it’s in your neighborhood or at the state level. It’s so important that you empower yourselves with the right kind of information that you need to know to make the best decisions for your family. And we are honored that our 60,000-plus volunteers all across this country are also working there in the community trying to provide information and guidance and service. We thank you every day for being a part of AARP, and we ask you to stay home and stay safe, and hopefully we’ll get through this pandemic sooner rather than later.

Michelle Kosinski: Thank you both so much for sharing all those thoughts with us. I know that helped many people out there. And now we’d like to bring into additional expert guests to the conversation. Bill Sweeney is senior vice president for government affairs at AARP, where he leads the organization’s advocacy efforts on behalf of older Americans at the state and federal level. Before joining AARP, Bill spent nearly 20 years working on Capitol Hill in the U.S. Senate and in a number of senior positions.

            Also, we have Lori Smetanka, the executive director of the National Consumer Voice for Quality Long-Term Care. That is the leading national nonprofit advocacy organization representing consumers who are receiving long-term care and services in nursing homes, assisted living facilities, and home and community-based settings. Welcome to both of you. Thank you for joining us, and let’s jump right in.

            So first of all, Bill, earlier we heard AARP CEO Jo Ann Jenkins address some of these questions that people should be asking; six of them she had, and you can find them on the AARP website as well. Can you remind us what those are and what happens if you’re not getting answers, or if you don’t trust the information you’re getting? And I’ll tell you that has been a real problem in so many ways throughout this crisis.

Bill Sweeney: Michelle, thank you so much. Those questions are so important for families who are terrified right now about what’s happening in nursing homes. And you can find them on our website at aarp.org/nursinghomes.

            The first one is really, has anyone in the facility tested positive for COVID-19 — and this includes the staff. What is the nursing home doing to prevent infections? Does the staff have access to testing, to personal protective equipment like masks and gowns? What’s the facility doing to help families keep in touch with their loved ones right now? This is an issue we’ve heard so many times on this call already. What’s the plan for nursing homes to communicate important information, and what’s the nursing home staffing levels right now? We’ve heard so many facilities are really having a challenge there, and when people need to help, certainly in a confusing and scary time like this, it’s so important. So again, those questions are all up on our website. AARP.org/nursinghomes.

Michelle Kosinski: So if you’re not getting the answers you need or you think you’re getting some shady information from your facility, what do you do then?

Bill Sweeney: Every state has what’s called an ombudsman who is responsible for looking out for issues in those nursing homes. So you can go online, look up your state’s ombudsman or your state Department of Health. You can reach out to the Departments of Health, either the state or your local Department of Health, and they can give you a little bit more information as well. They’re the ones who directly oversee these facilities. So if you are having problems or if they’re not being transparent, there is someplace that you can go to get some help.

Michelle Kosinski: And as a journalist, I want to say to everyone out there, if you have a problem, you can also contact your local newspaper, your local TV news, because sharing information is a great way to get problems solved as well. So a little plug there for journalists. But speaking of which, Bill, we’re seeing news reports about efforts to protect nursing homes now from liability due to the coronavirus. What do you think about that? And is that the right move?

Bill Sweeney: I think we’ve already heard some of the heartbreaking stories that have happened in nursing homes and assisted living facilities. It’s so early, still. You know, it feels like we’ve been doing this for a long time, but in reality, it’s only been a month and a half. And so there’s so much we don’t know. Just yesterday, the government accountability office put out a study that found that before the COVID-19 pandemic, 82 percent of nursing homes had been cited for poor infection control practices. This is basic stuff like washing your hands in between patients.

            What’s happening in nursing homes, the residents’ health and safety and quality of care has just been at such a risk. And so AARP is calling on Congress to protect the safety of residents, including by maintaining the rights of residents and their families to seek legal redress, to hold facilities accountable when people have been harmed or neglected or abused, or when family members can’t get the information that they deserve. It’s just way too soon to be granting immunity to facilities until we know a lot more.

Michelle Kosinski: Good point. Lori, let’s bring you into the conversation now. Nursing homes have basically prohibited families from visiting residents during the pandemic. So what can families be doing to better communicate with loved ones? What should the facilities be doing to help these communications happen? And is enough of that happening right now?

Lori Smetanka: Thanks so much, Michelle, thanks for having me and what a great conversation this has been so far today. We have been hearing the importance of communication between residents and families and between facilities and families. And we know that it’s been very difficult for the families and residents not to be together during this time. In fact, we are hearing that the isolation has led some residents to being withdrawn and depressed, and communication can help that. And the nursing homes have a responsibility to help the residents communicate with their family members. And there are a number of ways that we can make that happen. We heard Susan’s example of using video chat, which has been very successful and popular for all of us to stay connected with loved ones and friends during this time. And that can happen in the nursing home as well, using either the resident’s own phone or computer or tablet if they have one, or by using one provided by the facility. And in addition to the work that AARP Foundation has been doing to help get devices into the hands of nursing homes and residents, those nursing homes that don’t have devices can apply for special funding from the federal government to purchase them.

            So we also know that some residents need help accessing the phone or the video connection, and staff should be helping them do that, making appointments with family members. Some facilities have designated staff that they’re using to help with that. And so that’s really important that they really help maintain those connections. If you can’t do a live video visit, we know some people who are sending recorded audio or video messages to the nursing home to play for their loved ones;  you can tell them hello, you can tell them you love them. They can see your face and hear your voice, and it’s something that can be replayed over and over for them. It’s something that can be kept.

            Communication can also be done with the window visits. We’ve been seeing pictures and photos of that on the news. …In many places that’s been successful. We would say that if that is something that you would like to do, you communicate that intent to the facility and also to your loved one — that you would like to come and do a window visit — so that they don’t get frightened by a person just showing up at their window. And think about the time that you go and do that. Is it a convenient time for the resident? Make it during the day. Don’t go when it’s dark, so they can’t see who you are if you’re outside the window.

Michelle Kosinski: Yeah. Someone knocking on the window at 2 a.m. That wouldn’t work.

Lori Smetanka: Right.

Michelle Kosinski: Got it.

Lori Smetanka: Exactly. And then the last thing I would say is that you can also send cards, letters or drawings to residents to let them know that you’re thinking about them. Maybe have your children send them some cards and letters and drawings; that’s another great way to communicate.

Michelle Kosinski: Definitely. Bill, did you want to add anything on that subject?

Bill Sweeney: I echo everything that she just said, and I just wanted to say … AARP is fighting in Congress to try to get legislation passed that would make this more of a priority, both for visiting your loved ones, but also for telemedicine. It’s called the Access Act, and it’s bipartisan. It’s in the House and the Senate; Democrats and Republicans are all supporting it. And we are really hopeful that this gets included in the next round of legislation that gets passed. It’s 2020. Everybody’s using this kind of technology to stay in touch. And it’s great when there are facilities that do, but we’ve heard already one of the questions, someone who just wasn’t able to get the facility to let them use the device. And so we really need this to be something that’s universal, that everybody in America can stay in touch with their loved ones in these really scary times.

Michelle Kosinski: How receptive would you say the federal government is right now to your advocacy on all of these issues?

Bill Sweeney: I think they’re listening to older Americans, especially right now. They understand that this is hitting older Americans harder than anybody else. I think Congress is beginning to catch on as they read the stories. And as these horrible numbers come out of nursing homes, the terrible death toll, I think it’s beginning to become a bigger issue. And what we’re doing at AARP is really trying to make sure that people are reaching out. And I should have mentioned this earlier; you mentioned the press. If people aren’t getting help or if they’re having a problem with a nursing home or an assisted living facility, pick up your phone and call your member of Congress. I worked on the Hill for 20 years. Every office has people whose job it is to help families navigate these kinds of complicated issues. And they can be real allies in your efforts as well. So pick up the phone, call your member of Congress, tell them your story, and you can join the fight with us at aarp.org/nursinghomes. We have a little link there where you can send an email to Congress and urge them to make a bigger focus on this in the next package.

Michelle Kosinski: Very true. And Lori, we talked about some of the questions to ask facilities, but ultimately, if you’re thinking about removing a loved one from a nursing home or assisted living facility, what kind of considerations would you say are most important when you’re making that decision?

Lori Smetanka: I know many families have really been struggling with whether or not to take their loved one out of the long-term care facility during this crisis. It’s a very personal decision, and one for which I can’t emphasize enough that really you should have a plan in place before you do that. So there are some things that people should consider when making the decision about whether to bring their loved one home. First of all, do they want to come home with you? We think that residents often can say what their preferences are with respect to this. But think also about whether your home or wherever you’re going to be taking the resident who is equipped for them. Can they maneuver in the rooms, in the bathroom or manage the stairs? Do you need special equipment, like a hospital bed or a wheelchair to help them get around? Who’s going to provide the care that the person needs? Many residents need help with very personal care needs, including eating, bathing and toileting. Who is going to help them with those things? Are you capable of doing that? Can you help them transferring and lifting them between the bed and the chair, for example. Can you do that yourself? Or do you need to hire someone to do that? And how much will that cost you? And will that person be available, to help you? So you need to be thinking about how you’re going to be providing the care.

            Think about who’s going to be providing the medical care and oversee your medications, for example. Some residents rely on the facility’s medical directors as their personal physicians. So do you need to find a doctor in the community who can oversee their care and maybe make arrangements for that in advance? And then think about what happens if the resident needs more care than you’re able to provide? Can you bring in additional help at that point? Do they need to return to the long-term care facility? And what’s that process going to look like? Can they go back to their original facility, or will you need to find a new place for them?

            And then also, has the resident been tested for COVID? And have they tested negative? Have the members of your household tested negative? You do not want to be exposing them. If you’ve not been tested, and you don’t also want to be exposed if they’ve not been tested. So those are some important considerations.

            I mean, certainly the last thing I would say is if you are thinking about bringing your loved one home, understand that it might be for several weeks or even months that the loved one is going to be living in your house, and just make sure that you’re equipped to provide the best care possible for them. We want to keep them safe and we want to make sure that you’re doing that in a coordinated effort and have a plan in place to do so.

Michelle Kosinski: That just highlights the tough questions and situations that so many people are dealing with right now in addition to everything else surrounding coronavirus. And I know a lot of people are eager to talk to both of you. So let’s go to more questions now. Jean, is there somebody waiting?

Jean Setzfand: Yes. We have lots of calls. Our first caller is Patty from Illinois.

Michelle Kosinski: Hello, Patty. Welcome. Hello, Patty, can you hear us?

Patty: Yeah, can you hear me?

Michelle Kosinski: Great. We can hear you now, right?

Patty: So my question was about this: I looked at your six questions, the AARP six questions for asking the nursing homes, and I’m curious why asking them about their testing availability and plan and schedule isn’t on that list. My mom is in a facility that, according to all those other questions, they’ve been very transparent … they  had all the PPE they said that they had in place, and yet they still went from one employee who tested positive to 55 residents and 38 associates like in less than three weeks. And they couldn’t obtain the testing that they needed to in the facility. And I just … obviously it sounds like there had to be some sort of breakdown in PPE as well, but what can we do about the testing situation?

Michelle Kosinski: I think this is a question for both of you, probably.

Bill Sweeney: This is so heartbreaking, and I’m so sorry to hear that. This is extremely frustrating, and I absolutely agree with you that it’s sort of implicit in the question of asking them if anyone’s tested positive — whether they’re testing people. And that really does include the staff. When the staff who are working in these facilities, if they test positive that they can be very … it’s really important that they’re doing that testing so that people aren’t spreading this around in a nursing home environment. So, that’s absolutely important.

            The federal government is working on getting … they’ve made some announcements that they’re going to be doing a wide scale effort to do more testing in nursing homes. This is really something that should have happened already. It is  long past time. We’re focused on this — very carefully watching and advocating with the federal government to make sure that this gets done, that the tests are in these facilities as well as that PPE. … We’ve heard all these stories about people who can transmit this virus without even knowing it or without showing any symptoms. That’s why PPE is so important, especially for the staff who have to go from resident to resident. It’s really important that not only do they have the equipment, but they’re trained properly about how to use it. So this is why that study we heard yesterday that 82 percent of nursing homes have been cited for poor infection control practices was so alarming. And so it’s very important that we get this sorted out and then we get the testing and the PPE right away.

Lori Smetanka: Absolutely. … We know that states and the federal government certainly have been working on this issue. But as Bill noted earlier, continue to share your stories with your members of Congress and your elected leaders, really to emphasize the importance of getting these tests and this equipment into the nursing homes. The more they hear from you and the more they hear your stories, hopefully, the more we can do to get it there.

Michelle Kosinski: Definitely. Jean, did we have another caller?

Jean Setzfand: Absolutely. We have Emma from Mississippi.

Michelle Kosinski: Hi, Emma. Welcome to the call.

Emma: Hi, thank you, and thank you AARP for these weekly calls. They really, really do give us a lot of valuable information. Most of my question has been answered. I just wanted to know what alternatives we have when we don’t get the right answers, or when the answers don’t pan out, just like our former caller. Because we are pretty much in a bind when we have to find a nursing home for a loved one. We don’t have a lot of shopping opportunities.

Bill Sweeney: That’s a great point. And I’ve seen a couple of the other questions as well that are asking about this. If you’re having this challenge of getting through, again, calling your Congress, a member of Congress is so important, calling your state legislators, your state representatives, state senators, call anybody who will answer the phone. I think that people need to hear these stories. But I also want to make sure you know that there’s a resource available for those long-term care ombudsman that I mentioned earlier. It’s NASOP.org. And that’s where you can find the list of the ombudsman in your community.

Michelle Kosinski: Good to know. Let’s go to another caller.

Jean Setzfand: We have some questions coming in from YouTube. This one is coming from Linda, and she’s asking, “We’re afraid of poor treatment for our loved one if we complain. What do I do about that?”

Michelle Kosinski: Ah, that’s a good one. What do you guys think?

Lori Smetanka: Certainly I would suggest if you have concerns about the care that your loved one is getting, raise those with the facility. Share your concerns, be specific about what your issues are. Be factual about them, so that you’re not being overly emotional in sharing that information. So be specific about what the issues are and ask them what they’re going to do about it. Ask for a care plan meeting about how they’re going to address the issues that you are having with your loved one. Complaints can be filed with the long-term care ombudsman program, as has been mentioned, and they can help you address some of the concerns that you may be having related to care as well. And so you can find the information both on the NASOP website which Bill had shared, and also through the Consumer Voice’s website, which is at theconsumervoice.org. And we both share the information about the long-term care ombudsman program in the country.

            And you can also file a complaint with your state licensing agency if you have concerns about the care that your loved one is receiving. Right now they are targeting only certain types of complaints that they are looking at, but it’s important to register those complaints, and have them review them once they’ve started looking at all complaints again.

Michelle Kosinski: You can also talk to people, other people who have loved ones in the facility. There’s always strength in numbers, and for a lot of these organizations that are advocates or even your local news, you can always report things anonymously if you worry about things like that. And both Bill and Lori, I know that a lot of questions are coming in about this ombudsman, so I’m really happy that both of you have brought that up and explained it, but people have even more specific questions about what exactly the ombudsman can do, and how that could help the situation. Are there any examples of the types of things that the ombudsman can at least help to resolve?

Lori Smetanka: Sure. So long-term care ombudsmen are federally mandated advocates for residents of long-term care facilities. They’re a free service. They exist all over the country. Every state has a state program, and they are scattered throughout communities as well. They exist in communities. So you can call them with any type of question or issue that you may have with a facility; anything from poor care services, if you have concerns about discharge or rights violations, the ombudsman will help you work through any of those issues. They will talk to the residents. They’ll often talk with the family members and see what it is that you would like to have happen in that particular situation. How will the problem be resolved to your satisfaction? And then they’ll help you work through that. They can work with the facility and mediate issues with them. They can remind them of what their rights and responsibilities, what their responsibilities are in terms of providing care. They share information about what good care looks like. And they also remind again the facilities about what it is they’re supposed to be doing to provide care for the resident and can help them achieve that. So they’re a very valuable resource in communities. And we would highly encourage you reach out to them, not only for information, but if you do need some help in your facility.

Michelle Kosinski: That’s great information and I want to thank people for their questions because your questions and then the answers to them help so many more people out there who might be listening and who have the same issues that you’re having. And this coronavirus pandemic has reinforced how important it is to have connections to our communities as well and to each other. AARP, in fact, provides a lot of opportunities to connect with your community and to one another without leaving your home. So if you want to try virtual offerings like movie watch parties, coffee chats, even exercise classes, remember you can visit aarp.org/nearyou (and near you is all one word).

            So let’s get back to more of your questions and hear from everyone out there. Again, that has been a great part of this. Jean, who’s next?

Jean Setzfand: We have Hercules from Pennsylvania.

Michelle Kosinski: Hi Hercules, welcome.

Hercules: Hi there. Most of my question’s been answered already, so I just wanted to share something briefly about a client that did get the virus and passed away. And the interesting thing is the family did not hold anything against the community. It’s a really great community. And I know they did everything they could. It was in the memory care side, where it is more difficult to manage social distancing. But what happened is, what they didn’t like is that the week before there was an issue with their sister’s … cell phone, and staff somehow didn’t react fast enough to at least give them a chance to speak to (inaudible). Now nobody knew she would contract the virus, but that’s the one thing that they’re really feeling the saddest about. They didn’t have a chance to communicate after that point. So it’s just a small thing, but it’s just, everybody was in panic because they had their first case the week before. But at the same time, unfortunately she didn’t reach out to me because I’m a little bit more tenacious than average. But that is the one thing, they didn’t hold it against the community cause they know the rules and the policies and procedures were top-notch, but it’s just not, didn’t have the ability to communicate with their sister up to the week before. Anyway, that’s just something I wanted to share.

            But the only other thing is I’m dealing mainly with … skilled nursing facilities as somebody refer people to me for independent living and assisted living and memory care. And I have had some inquiries because not everybody has a choice to spend … 16 hours a week is like $200 a week on, or $400 a week typically on in-home care. And to your point, it’s very, very helpful what you summarized in terms of what to consider before you bring somebody home. So while nobody, not everybody has the choice of staying at home, some people have also inquired because they can’t cope with the loneliness, so they’d rather be in a community where there are some services. However, we’ve tried to from our side — I’m with a placement agency and I’ve been, I have a quite a network of people I work with — to compile questions as well that we would have not necessarily asked only to a nursing community, but to an assisted living and independent living community. Are there any top-of-mind questions in addition to the testing and the policies that you would ask an assisted living community or memory care community, where that’s often the case where people don’t have that many choices left, in addition to what you have already said there. And previously you said — have you been tested first, what’s your PPE, what’s your current staffing and all that? What else would you ask an assisted living or independent living or a memory care community?

Bill Sweeney: Hercules, thank you for that question. I first want to say that one of the things we’ve been fighting for at AARP for a long time, is to actually give people more choices so that they don’t feel like a nursing home or an assisted living facility is their only choice if they do need that kind of specialized care. And so all around the country in every state and at the federal level, we’re advocating for more access to home and community-based care — to make it so that that’s more affordable, that people who don’t have the resources can take advantage of that as well. I think it’s so important that if families can take care of their loved ones at home, or if a loved one or an individual can stay in their home, that they have the ability to do so. But if they can’t, and they really can’t, and their families reach that situation where they have to think about what’s next, I think that the six questions on the website are really a great first step and to see where that takes you with your conversations. You know, really understanding whether the facility is prepared, and I also think doing some research, talking to some other folks, getting references and really making sure that this is a facility that has a good track record — and we certainly know that those are out there, that the facility has a good track record, and that they’re really committed to putting the patients first.

Michelle Kosinski: That’s great information. Let’s go to Jean for some more calls.

Jean Setzfand: Our next caller is Barbara from Illinois.

Michelle Kosinski: Hello. Barbara. Welcome.

Barbara: Hi. Thank you. I was very enlightened when I heard what the gentleman was talking about. That kind of helped me a lot, so to pass on what I can to do from here in Chicago, Illinois, a foster grandparent volunteer program.

Michelle Kosinski: Great. Do you have a question for Bill or Laurie?

Barbara: My question is that will he be able to let us know about what we can do as volunteers to help … since the people on the front line, maybe we can do something to protect our self and then to help them as well; so helping out people at the different hospitals and places like that. What can we do in Illinois?

Michelle Kosinski: Great question. Maybe Lori, you want to take that?

Lori Smetanka: Certainly, I think that being engaged with your community is important, and in terms of helping out your community, I would recommend maybe you get in touch with your AARP chapter in your area to see if there are certain needs that they have that potentially you could volunteer with. Being connected to your community leaders; I know that there are a lot of opportunities for people to volunteer right now in their communities with food banks and with different community services to help people as well. So, looking at your community resources might be your best bet.

Michelle Kosinski: Good to know.

Bill Sweeney: I want to make a pitch. You know, Jo Ann Jenkins, our CEO, mentioned this earlier as well. If you go online and look up AARP Community Connections, it’s a really great opportunity. They’re called mutual aid groups where individuals can help their neighbors and help others who are in need right now and who need some help. So just something to think about as well, if you’re looking to get involved in your community.

Michelle Kosinski: That’s great. Jean, who else is out there?

Jean Setzfand: We have Victoria from Idaho.

Michelle Kosinski: Welcome Victoria.

Victoria: Thank you for taking my call. My husband and I will be shortly moving into assisted living; my husband has Alzheimer’s and I have physical problems, so it’s really necessary. But the problem I’m having is that the facility we chose just had an outbreak of the C virus — only one employee, but nonetheless, I’m a little apprehensive.

Michelle Kosinski: Hmm.

Victoria: Maybe I shouldn’t. Because they locked down the facility for all mixing of everybody.

Michelle Kosinski: Got it. So you’re wondering if you should even be using that facility? Bill or Lori, do you want to weigh in on that?

Lori Smetanka: Sure. I think it’s important for the caller to talk to her contacts at the facility and the administration, and really get some good information from them about how they are working to protect the residents and the staff from the spread of the virus from further people contracting it. And ask them to talk through with you their specific plan on what that looks like. Many facilities do have good plans in place where, they are separating people who have been isolated. They’re working on testing the staff and the residents to keep on top of how many people either have contracted it or who’s turning out positive and negative. They’re making sure that they have enough protective equipment on hand, so certainly it’s important to get as good information as you can about what is happening there. And certainly, think about the timing of your move. If you’re concerned at this point about moving into the facility right away, do you have options to maybe delay for a short period of time, before you move into this particular assisted living facility.

Michelle Kosinski: And also, I guess at this point, depending on where you live, it could be hard to find any facility that hasn’t had at least one case, I’m sure. So it’s all in how they’re handling it, I guess, isn’t it?

Lori Smetanka: Sure. Absolutely. I think the six questions that have been talked about today that AARP has put out are really excellent ones to be asking the facility administrators, and asking them how essentially they are protecting their residents and the staff from further spread of the virus.

Michelle Kosinski: I think we probably have time for another question or two. Jean, do you have someone else out there?

Jean Setzfand: Yes, we do. Ruth from Mississippi.

Michelle Kosinski: Oh, good. Another Mississippian. Hi, Ruth.

Ruth: Hi. This question can be either for Bill or Lori. You talked about assisted living facilities, and you’ve talked about long-term care, but what is AARP doing for those who are in adult day care facilities?

Michelle Kosinski: Good question.

Bill Sweeney: Thanks Ruth. And I’m glad you brought that up because it’s an issue that we are focused on as well. When we talk about these — and I apologize because we talk about long-term care, we talk about nursing homes — we sort of do that as a shorthand. When we talk about that, we mean all of those things, all of those different, the continuum of settings where people are getting care. And the people who work in this space call it long-term services and supports, which is a bit of a mouthful, but we sort of use some shorthand when we talk about it. When we’re talking to policymakers, we’re talking about all of those things. And so, you’re absolutely right to be focused on that. It’s really the same kind of questions. It’s the same kind of the same kind of issues; making sure that people have the PPE that they need, that they’re doing the testing really anywhere where people are coming together. These are situations where we really need to have good infection control practices right now. We have to have the testing, we have to have the staffing, and we need people to be able to have choices to choose the right setting that’s right for them. And so those are all really important. And I’m glad you brought that up.

Michelle Kosinski: OK, Jean. Let’s take another caller.

Jean Setzfand: Rhonda from Virginia.

Michelle Kosinski: Hi, Rhonda. Welcome.

Rhonda: Hi. Thank you so much for taking my call. So my mom is in an assisted living facility here in the state of Virginia, and unfortunately, they’ve been in operation, this facility, almost two years now. They’ve had four or five changes in their senior leadership team in that time. Their whole staff has turned over, and they have not obviously been transparent throughout these couple of years. I have had the opportunity to talk to my ombudsman, who bounced me around between the Health Department and the Office of Aging with specific COVID questions. So I’m really at the point where I love the idea of perhaps reaching out to the congressman, but I was also curious if Bill might have some other ideas of how I could help to advocate not only for my mom, but for others, both within the state of Virginia and perhaps nationally. And I really don’t know how to get involved. So what can I do and how can I get involved?

Bill Sweeney: I’m so sorry to hear that — and it’s, I’m sorry to say, a story I’ve heard more times than I would like to recount in the last month and a half. I mentioned earlier, aarp.org/nursinghomes. We have an ability for you to go there and send an email to Congress and to get involved. That’s one way. I do think that calling your member of Congress is a great idea, calling your state representative — I guess in Virginia they called them delegate — or your state senator is a really good idea. Calling your governor’s office is a good idea. I think someone mentioned earlier tenacity, having the tenacity, and fighting for that. Unfortunately, I wish he didn’t have to do that, but in a situation like this, if you’re not getting the answers you need, that’s a good way to do it. But again, aarp.org/nursing homes is a great way to start, to get started, and I know that Lori’s organization and others are also great places to get engaged if you want to be part of this effort.

Michelle Kosinski: Bill and Lori, do you have any closing thoughts or recommendations that AARP members should understand most — some good takeaways from our conversation today? You want to start, Lori? Oh, go ahead, Bill.

Lori Smetanka: Sure. Go ahead, Bill.

Bill Sweeney: Thanks, I just want to remind everybody to get involved. Look, the issue is that members of Congress, people and these policymakers, decision makers, they really do respond to the people who are reaching out. And I know as a family member with someone in a nursing home, we often don’t think of calling if we’re having a problem with the nursing home — we don’t think to call our member of Congress, but these are facilities that take federal dollars; they take Medicaid, they take Medicare money. They’re regulated by the federal government. At some level they’re regulated by the state government. These are places where calling your member of Congress really does make sense. And I can assure you that they take it seriously, that when constituents call with these kinds of problems, members of Congress really do listen and pay attention. So I hope that you’ll take an opportunity to do that and to get involved. And again, aarp.org/nursinghomes has some great resources for you on this.

Michelle Kosinski: I agree with that. Members of Congress can really make things happen, especially in an emergency. And how about you, Lori? What would you like to say in closing?

Lori Smetanka: I think that families certainly need to maintain open communication, not only with their residents, but with the facilities and to really push them to be communicating with families on an ongoing basis. We hear good examples of how that’s working across the country, and I’ve been trying to share some of those on our website as well. Again, that’s at TheConsumerVoice.org. But I think the other thing I’d like people to remember is that even during this crisis, the residents of long-term care facilities are entitled to receive good care and services that meets their needs —  both their physical needs and their emotional and their mental well-being. And that we need to be paying attention to the fact that they do have rights during this time, that their needs should be met, and for the families to stay active and proactive in ensuring that their loved ones are receiving good care.

Michelle Kosinski: That is great. Great information to close us with. So this has been such an informative discussion. I think there were a lot of subtopics that were covered. So thank you so much to each of you for answering these questions. Also, thank you to our AARP members, volunteers and our listeners for joining us. AARP, a nonprofit, nonpartisan member organization has been working to promote the health and well-being of older Americans for more than 60 years. In the face of this crisis, AARP is providing information and resources and fighting for older adults and those who are caring for them. All of the resources that we referenced here, including a recording of today’s Q&A, can be found at aarp.org/coronavirus on May 22. We’re off next week and returning June 4 with another informative and essential conversation about navigating all this during coronavirus. I want to thank you all, and this concludes our call.

SPECIAL CORONAVIRUS  Tele-Town Hall May 21, 2020, 1 p.m.

Michelle Kosinski:  Hello everyone. I‘m Michelle Kosinski and on behalf of AARP, I want to welcome you to this important discussion about the coronavirus. AARP, a nonprofit, nonpartisan member organization, has been working to promote the health and well-being of older Americans for more than 60 years. In the face of the global coronavirus pandemic, AARP is providing information and resources and fighting for older adults and those who are caring for them. Today we are going to talk with two special guests. We have Emmy award-winning actress Susan Lucci, and AARP CEO Jo Ann Jenkins, about the impact, which is large of a global coronavirus pandemic in nursing home, assisted living and skilled nursing facilities.

[00:00:48] If you‘ve participated in one of our tele-town halls before, you know this is similar to a radio talk show, so you can ask questions live. If you would like to ask your question, just press *3 on your telephone to be connected with an AARP staff member who will take your question and then place you in queue so that you can ask your question live. To ask your question please press *3, and for those of you who are listening to this on Facebook or YouTube, which is great, you can also post your questions there in the comments section.

[00:01:19] For those who are just joining now, again, I‘m Michelle Kosinski and I want to welcome you to this important AARP discussion about the impact of the global coronavirus pandemic. We‘re joined for this very special event by Susan Lucci, Emmy award-winning actress and New York Times best-selling author; and Jo Ann Jenkins, chief executive officer of AARP. Later on, we‘ll also hear from two experts to help answer your questions: Lori Smetanka, executive director of the National Consumer Voice for Quality Long-Term Care; and Bill Sweeney, senior vice president of government affairs for AARP. We‘re also going to be joined by AARP‘s Jean Setzfand. Jean will be our organizer and help facilitate your calls today.

[00:02:06] AARP is convening this tele-town hall to help you access information about the coronavirus. While AARP sees an important role in providing information and advocacy related to the coronavirus, we also want you to know that the best source of health and medical information is, of course, the Centers for Disease Control and Prevention, the CDC. It can be reached at cdc.gov/coronavirus. This event is being recorded also, so you can access the recording at aarp.org/coronavirus just 24 hours after we wrap up.

[00:02:41] So now let’s get to our special guests. Susan Lucci is an Emmy award-winning actress and New York Times best-selling author who is best known for portraying the iconic Erica Kane on the ABC daytime drama All My Children from 1970 to 2011. Who doesn’t know Susan Lucci, really? She has also appeared on popular television shows, Hot in Cleveland, Lifetime’s Devious Maids, and ABC’s Dancing with the Stars. She’s been called daytime’s leading lady by TV Guide, the New York Times and the Los Angeles Times, and will be featured in ABC’s upcoming special The Story of Soaps, premiering on May 19th of this year. She’s also the 2020 Ambassador for the American Heart Association’s Go Red for Women movement that raises awareness for women’s cardiac health.

[00:03:30] Also, we have Jo Ann Jenkins, the chief executive officer of AARP, where she leads the world’s largest nonprofit, nonpartisan member organization. Since becoming CEO in 2014, she has transformed AARP into a leader in social change dedicated to empowering people to choose how they live and age. Her best-selling book Disrupt Aging: a bold, new path to living your best life at every age has become this signature rallying cry for revolutionizing society’s views on aging by driving a new social consciousness and sparking innovative solutions for all generations. Prior to becoming the CEO of AARP, Jo Ann was president of the AARP Foundation, and she’s also served in numerous high level of roles in government. So I want to thank you both for being here for this important conversation. I think this really highlights how important this subject is.

[00:04:26] Starting off, Susan and Jo Ann, because this is a critical national conversation, I also want to know why you personally wanted to set aside a time for this today. Susan, let’s start with you.

[00:04:40]Susan Lucci:  Yes, to begin with, I do have my mother, and I know how lucky I am to still have my mother with me, although she is living in an assisted living facility. I’m in New York and she’s in Florida, but I miss her very, very much. And I, of course, worry like so many people in this country who have a loved one in a nursing home or in an assisted living facility, and I am happy to say that where my mother is a resident, they have been very transparent in communicating. There have been no incidents of any residents having been struck by COVID. And so that, of course, allays my worry. In addition to which they have established a virtual ability to speak to my mother virtually so that I can see my mother when I speak to her and she can see me, and I can hear her and she can, well, she’s lost some of her hearing, but somehow, she can hear me when I’m speaking to her on that screen. And I’m so grateful for them for that. I know that not everyone’s experience is that. And sitting at home like so many Americans and listening to the briefings every day and hearing the numbers of people who have lost loved ones in nursing homes, it’s heartbreaking. And I’m here today because I am so very thankful that Jo Ann and AARP asked me to tell my story to be part of this. You sit home, and you hear the numbers, and you feel so helpless. If in any way, I can be part of this to help AARP shed a light on this very important problem to help our most vulnerable citizens, my mother’s one of them, of course, and I’m grateful for the opportunity.

[00:06:35]Michelle Kosinski:  Well we are very happy to have you. And Jo Ann, how about you? What made you want to set aside this time?

[00:06:36]Jo Ann Jenkins:  So I’m first honored that Susan Lucci has agreed to come on and tell her and her mother’s story with this. But I think one of the clear facts is that nearly 1.3 million Americans live in care facilities. And we know as this COVID pandemic has hit us that in some states, half of those people who have lost their lives have lived in some kind of nursing facility. And so it brings to the forefront the importance of looking at nursing facilities, assisted living facilities, and other care facilities to make sure that there is a standard of care across all of these living facilities to make sure that our members and their families have the kind of health care that they need to be able to survive this pandemic and to really begin to thrive, and hopefully, it won’t last too long.

[00:07:39]Michelle Kosinski:  Well, thank you to both of you for underscoring the importance of this topic. I know it means a lot to everyone out there who’s listening. So let’s begin with some questions. Susan, you mentioned your 103-year-old mother is in a facility, and she had been a nurse prior to becoming a stay-at-home mom. And your entire life, both personally and professionally, has been centered in New York State. How personal was the coronavirus outbreak to you? How did you manage through the most difficult days, especially in late March? And how are you doing today?

[00:08:15]Susan Lucci:  Thank you. Thank you for asking. Yes, as I said, when COVID-19 broke out, I was very concerned about my mother. The last time we saw my mother in person was the first week in March — March 2nd actually — and we flew home to New York; my mother remained in her assisted living home there in Florida. And by the end of the first week in March, that assisted living had gone into lockdown, complete lockdown, that was in order to protect the residents. They’ve been very successful in that. When the staff comes in to work, they are tested, and they are scanned. And it’s been a very successful program, I’m very happy to say. But, of course, like so many of us who have mothers and fathers in assisted living, we are missing being able to see them, especially if you’re not in the same state. You can’t go outside their window and let them know you’re there. But fortunately in our case, there is a virtual phone call. And so I thank heavens for FaceTime and Zoom and all that we’ve all come to depend on now. I’m just really happy that that exists. And that’s basically what we’re doing now.

[00:09:34]Michelle Kosinski:  And did I hear you say that there have been no cases of coronavirus in the facility where your mom is? Is that right?

[00:09:42]Susan Lucci:  That’s right. That’s exactly right.

[00:09:46]Michelle Kosinski:  That’s incredible.

[00:09:46]Susan Lucci:  It is incredible, but they, again, I underscore the fact that this is such a fortunate circumstance for us. I know that other such facilities exist, and I say this in a message of hope that people who have loved ones who are going to assisted living or a nursing home are not discouraged to think that it’s only the horrible numbers that we’re hearing. There are some good numbers, too. And I wish that everyone in the future will have access to such good numbers that everyone can share in that. That we can all take care of our most vulnerable, our parents. My mother was part of the Greatest Generation and a really terrific mother. And I know so many of us feel that way about our parents, and we want them to be well taken care of. They took care of us and we want to take care of them. And that’s the goal.

[00:10:42]Michelle Kosinski:  I hope that that facility and others like it — that seem to be doing all the right things and taking the right measures and making sure that there’s communication, too — I hope that they’re sharing those methods with other facilities to try to spread the word on what’s working. I think that’s great. And first of all, thanks for sharing your personal side of this. And broadening that out there’ve been so many stirring images out there that we’ve all seen by now of people standing outside nursing homes and assisted living facilities, trying in any way they can to stay connected with their loved ones, holding up signs and waving through the windows. It really grabs your heart. Is there any one moment that resonates with you personally?

[00:11:28]Susan Lucci:  I have to agree with you. It grabs your heart. And I so wish that I could be one of those people standing outside the window of where my mother is. I can’t be; we’re here in New York. We can’t travel. She can’t travel. She’s there. We’re here. They’re in lockdown. Even if we were there … but we could, you know, go by the window. Actually, the Sunday before Mother’s Day, the assisted living facility that my mom is in had a parade. People who were there could stage a parade. The residents would be inside, and they could see out. And they asked people if they wanted to decorate their cars, or if there could be balloons and signs, and people did. Fortunately, I have friends and a nurse who I call on to accompany my mother to medical appointments that she has to go to apart from the facility — and I was able to call on her and she’s so, so good. But I see so much of such kindness, such kindness and skill. And the nurse that I called on, it was actually her day off, but she chose to take her car and go there with balloons for my mom and hold up a sign, and I know that put a smile on my mother’s face because that’s a familiar face, that’s someone who has spent time with my mother. It couldn’t be me, but it could be someone very kind, and someone who has a great relationship with my mother as well.

[00:12:59]Michelle Kosinski:  And I love finding out that your mother had been a nurse. So I want to know with all of this happening around her and now she is the one being helped by medical staff and being around them, what does she think about the pandemic and going through this? And she lived through the Spanish flu pandemic as well.

[00:13:24]Susan Lucci:  My mother was born in 1917 and, yes, I guess as a baby she went through that and then the Depression and then World War II. That’s a very ...

[00:13:35]Michelle Kosinski:  Yeah, it is a lot.

[00:13:36]Susan Lucci:  ... healthy and resilient generation. And my mother is that. I haven’t spoken to my mother about the pandemic. I’m not sure that my mother really is totally informed about that, nor does she need to be, but she’s very, very happy to speak to us and to see us. And having been a nurse, when we’ve been there, or when I call sometimes at night, my mother will have … she had a couple of falls and the first time she recovered in 10 weeks; she thought … she had a quick recovery because she grew up in the Pocono Mountains and she drank a lot of milk and she ate a lot of ice cream. So this was, this was great. But the second time, she recovered mostly, but she had to be on a walker, although she was still wearing her leopard kitten heels, on her walker that she ...

[00:14:29]Michelle Kosinski:  Yes, yes. That’s my kind of girl. That’ll be me.

[00:14:33]Susan Lucci:  Mine, too. Absolutely. But when we would go and visit, sometimes we would find her at the nurses’ station. That’s where she would gravitate to. She loves to talk to people and she is very charming, and she would just find her way to the nurses’ station on her walker, in her leopard kitten heels, and talk a lot to the nurses. And they are wonderful to her — and not just to her. I see how wonderful they are with each of the residents. And I’m just so grateful for their kindness and their skill and their humor, their sense of humor.

[00:15:07]Michelle Kosinski:  So looking ahead, what are your hopes and goals on the other side of this pandemic? Whenever we have more clarity and a better sense of safety, how do you want to live your life? And also, we want to hear what have you gained as well as missed the most during this time.

[00:15:26]Susan Lucci:  I think like most of us, we want to get out and see our family and our friends and be together in person, even if it’s with masks. That’s OK. And if we are out to dinner, we can just lift that mask up and take a bite, put it back down. But we can talk to each other or we can still be with each other. And I would love to be able to do that. I’d love to see my family. Love to get on a plane, go see my mom. And we, I’ve got to tell you that we gained a new baby granddaughter during this time.

[00:16:01]Michelle Kosinski:  Oh, congratulations.

[00:16:03]Susan Lucci:  Thank you. Such a beautiful baby. She was born at the height of the epidemic in New York City. She was born in April, the beginning of April. And I will say that our daughter-in-law has been a rock star in all of this, and the baby is doing so well, and she’s beautiful. But we haven’t met her in person. So we both lost and gained there; we gained much more and thank heavens for FaceTime. But I really look forward to seeing her. I’m meeting her in person when this is all past.

[00:16:34]Michelle Kosinski:  That is wonderful to hear. And Jo Ann, I want to bring you into the conversation again. We were just listening to Susan’s personal story and some of these experiences are just all too familiar right now, so we want to hear from you as to the scope of all this. How vulnerable are nursing homes and assisted living facilities right now during this crisis? How many people are being affected? And tell us more about what AARP is doing to help people who are in nursing homes and their families.

[00:17:04]Jo Ann Jenkins:  As I said earlier, there are about 1.3 million Americans who live in some type of nursing facility across this country. And we know that roughly 30,000 of the deaths that we’ve seen here in the US have been those who have lived in nursing homes. And so it’s important for us to keep that at the forefront of our conversation. Obviously, these numbers are devastating, and we need to be able to do something to make sure that those who have the authority, whether it be Congress or the Administration or governors or mayors, are really taking this seriously. I think one of the things that we’ve all learned from this is just how important health care is, and how important it is for us to make sure that those who are providing the health care in nursing or assisted living types of facilities have the kind of equipment and access to information that they need.

[00:18:05] I’ve been so proud of AARP and our team, not only here — the advocates who work here in Washington — but those at our state offices, in our 50 state offices and U.S. territories, because they’ve been able to work directly with governors and with mayors and other local elected officials when they’ve reached out to us and in many cases, us reaching out to them to say, this is important. We need you to understand what it is, what’s going on in these nursing facilities. We know that people who enter this profession are really those who want to be able to help. We know that they are there on the front lines of this pandemic stepping up and doing work, and so many of us are grateful to them. But we also need to make sure that we are asking states and the federal government three main issues. First and foremost, I’d put at the top of that list the care facilities. Do they have the kind of PPEs — masks, gloves, gowns, equipment — that they need to be able to protect themselves and to protect the patients who are in those facilities? We need to make sure that the nursing facilities are transparent with the information — which facilities have tested positive, whether it be an employee or someone living as a resident, and just what it is that they’re doing to try to prevent the spread.

[00:19:40] And Susan touched on this last piece. So many of our family members are in these facilities, and some of them have been in there for 30 days, 60 days, and haven’t been able to see or speak with the loved one. So having access to that virtual visit, whether it’s through Skype or Zoom or Microsoft Teams or whatever that device is, for them to be able to see a family member or a loved one, to be able to communicate with them is so important, particularly when this may be, in many cases, unfortunately the last time they get to communicate with one of their loved ones.

[00:20:16] And so we’ve been really pushing out our advocacy work. We’re honored to do this. Our team has been so diligent in going out and reaching out all across this country, trying to push this agenda so that we can have safe health care in these facilities and get our members and their family members the kind of information that they need about those that they love that are in these facilities. We know that there are many with us, and so many of our members have reached out to us and serving as volunteers around the country, trying to continue to get the word out, but it’s an uphill battle and we really want to make sure that everyone who’s in a facility has the kind of treatment, like Susan described, her mom is getting there in Florida. But we know that’s not the case in all situations.

[00:21:13]Michelle Kosinski:  And if you could assess the situation today across the country with the PPE for staff, what would you say?

[00:21:21]Jo Ann Jenkins:  I would say that there is still great need for sustainable PPE equipment in some facilities across this country. I think that, in many cases, it’s being left up to the state elected officials who are guiding that. And we know that even in our own surrounding communities, that there are many who are still asking for mask and gowns and gloves and even food being delivered for those who are caring for our family and friends in these nursing facilities. So I still would say we are trending upward, but still a long way to go before we can say everyone has access to the kind of PPE equipment they need and will continue to need in the foreseeable future.

[00:22:09]Michelle Kosinski:  Got it. And for all of those listening out there, I’m sure you’re coming up with your own questions and you’re thinking of things, information that you need. So as a reminder, if you would like to ask a question live for either Susan or Jo Ann, remember to press *3 on your phone, or if you’re on Facebook or YouTube, you can ask questions in the comments. Also, Jo Ann, I wanted to ask you, we know that so many people out there who are family members just feel helpless, they’re worried, they might be afraid. How can they help their loved ones who are in facilities and what questions do they need to be asking?

[00:22:48]Jo Ann Jenkins:  We put together six questions that we think that family members need to be able to ask the nursing facilities that their loved ones are in. And it’s available on our website at aarp.org. But just to go over them quickly: The first question you need to be asking is, has anyone in the facility tested positive for COVID-19? That includes patients as well as staff and those people who are providing service to the facility. You want to know, is the nursing home doing any preventative inflections? That is, do they have a plan to stop the spread if in fact someone in the facility has tested positive? That’s important for us to keep track, as we try to prevent the spreading of the virus in the future. What we just talked about … do they have enough PPE equipment like masks and gowns to be able to sustain them over the next 30 days, 60 days to be able to do it? Fourth, I would say, what is the nursing home doing to help families keep in touch with their loved ones right now? Family members are a familiar sight. It gives people energy. It gives them a reason for living, and we need to make sure that the nursing facilities are reaching out to family members and conveying not only what’s happening to our personal loved ones in the facility, but also just giving them that level of comfort to alleviate their anxiety level about what’s going on.

[00:24:29] I would say fifth, what is the plan for the nursing home to communicate important information to not only the residents, but also the facilities? In some cases we know of people who are in nursing facilities, who do not know the status of their own facility that they’re in, whether someone has tested positive or not. And then, sixth and lastly, but surely not the least, is the nursing home currently fully staffed? Because it’s so important that we take care of the health care providers who are on the front line fighting these issues every day. And so many of the nursing facilities we know are understaffed, or health care people who are servicing two or three different care facilities. And so that’s important that we have the right level of staffing at these facilities to be able to do that. And then I would just say again that those six questions you can find on aarp.org/nursing homes, should anybody want that information again.

[00:25:37]Michelle Kosinski:  That’s great. A lot of resources out there. So now we have the great resources of Jo Ann and Susan with us. We want to take some of your questions out there. … Let’s now introduce AARP’s Jean Setzfand to help facilitate all of our calls. Welcome, Jean.

[00:26:08]Jean Setzfand:  Hi Michelle, glad to be here.

[00:26:10]Michelle Kosinski:  Glad to see you again, in my mind. So what is our first question out there?

[00:26:16]Jean Setzfand:  Our first caller is Roxanne from Maryland.

[00:26:20]Michelle Kosinski:  Great. Hello, Roxanne from Maryland, and I understand you have a question for both Susan and Jo Ann.

[00:26:27]Roxanne:  Yes, I do. First, I’d like to say that I’m a big fan of Susan’s.

[00:26:31]Susan Lucci:  Oh, thank you.

[00:26:33]Roxanne:  You’re welcome. And my question is to both of you. I have a sister right now who’s in long-term care, and she’s in a facility. And it’s really hard for us, and we’re really worried about her. What advice do you have?

[00:26:50]Susan Lucci:  Well, first of all, when I hear you speak this way, I know what you’re going through and I so sympathize with you, and I really think, if I may say so, that … if the facilities will answer those six questions when you ask them, I think that that would go a long way to allaying your worry. That would be my wish that all across the board, that nursing homes and facilities would come up with these things that Jo Ann is asking the questions about, and act on those. And then we never again would have to sit home and hear these terrible statistics coming at us and being shocked by them and surprised by them and then worrying about our loved ones who are in such facilities. My heart goes out to you. I wonder is there a way for you personally to FaceTime with your sister? Does she have a cell phone? Can you do that?

[00:27:52]Michelle Kosinski:  I’m sorry. I think our caller can no longer respond.

[00:28:00]Jo Ann Jenkins:  Let me just say my heartbreaks when I hear the caller voicing concern for someone who’s in a long-term care facility. I will say that the Maryland governor has certainly been very proactive in reaching out to AARP to work with us in trying to guide what should be going on in the state of Maryland. And so we are very pleased with his participation and his very deliberate attention to this. I would absolutely be reaching out directly to the long-term care facility, and demanding that you get answers to those six questions and just asking them for a routine kind of checkup, whether it’s daily or several times a week so that you know what is going on with your loved one. And please know that you are not the only one out there going through this; that we’re all rooting for you and your loved one. And it’s important that we all provide each other the kind of love and support and caring that is so needed in this time of pandemic.

[00:29:17]Michelle Kosinski:  Jo Ann, what if you’re a member of the community, and you know what people are going through. You care about the facilities in your area. Is there anything that a person in the community could do to help people or staff in these facilities? Like right now if you could say, here’s a way to help, what would that be? If there is a way?

[00:29:38]Jo Ann Jenkins:  I think one of the things that we keep hearing from our members around the country is really getting support to those frontline workers, whether that be in the area of providing food or servicing or just letting them know that they are appreciated, that we understand how difficult it is, not only for the person who is the patient, but also for the health care workers who are experiencing this high level of stress and anxiety and workload on a daily basis. You see average everyday citizens and neighbors sewing masks and bringing additional kind of PPE equipment, homemade or either purchased, to these facilities. And as you said, when you live in an area, in a neighborhood, you get to know those facilities, whether you have someone in there or not. And so many of our other local nonprofits and volunteers are reaching out directly to these health care facilities to provide additional help and actually extra hands for the kind of things that they need to do on a daily basis.

[00:30:53]Michelle Kosinski:  Good to know. Jean, let’s go to our next caller.

[00:30:57]Jean Setzfand:  Right. We have a Jenny from Illinois.

[00:31:00]Michelle Kosinski:  Hello, Jenny.

[00:31:02]Jenny:  Hi everyone. Thank you so much for this valuable information. First and foremost, I want to say: Susan, huge fan. My mom had me sitting in front of television … when I was very young watching you on All My Children. I’ve seen you in different movies and commercials and though I know that those are only personas of yours, I will say what has stuck out to me over the years is that your elegance and grace seem to transcend all of the different roles that I saw you in. What do you recommend for people on how to age gracefully, such as you, especially now that you’re going through this with your mother and many of us also are in this position. And so how, what can you help us; what guidance can you give us to live a good life and have those great abilities that you have, to age gracefully and stay optimistic during a really challenging time.

[00:32:02]Susan Lucci:  First of all, what a lovely compliment you give me. Thank you very, very much. It sounds to me from the questions you’re asking and the way you’re asking that you’re already on to something. You’re talking about staying optimistic. I think … that’s the best you can. I think keeping up with your routine so that your total wellness is being taken care of, then you’re better able to care for loved ones, whether they’re children you’re still raising or your loved one who’s older and most vulnerable. It helps to keep a clear mind. And as I said, that total wellness can help you, of course, but can only help you help those you love even more. I think you’re already on to something. I think you know, all about kindness and gratitude and … whatever really can bring out the best and to keep you feeling calm and in your best frame of mind can help.

[00:33:03]Michelle Kosinski:  Lovely advice. Thank you. Jean, are there other callers?

[00:33:09]Jean Setzfand:  Yes. We have Deanna from Utah.

[00:33:13]Michelle Kosinski:  Hi, Deanna from Utah. Welcome.

[00:33:15]Deanna:  Hi. Thank you. I’m new to your forum and really to your group, so I appreciate the chance.

[00:33:25]Michelle Kosinski:  We’re happy to have you.

[00:33:28]Deanna:  I actually, I ended up … I ended up on the news here locally, over this very same topic that you’re talking about today. In Utah, my stepmom was number 8 to die of the virus, and she died on April 2nd. And she’s been in, was living in a nursing home. And we, the family, never, we ... I don’t know, Utah’s dragging a little bit behind, so our numbers are at now a little bit more, but this was pretty new to us. And we, although the nursing home had been very forthcoming and open with us for a while, suddenly they stopped being open with us. And they never told us that she, that my stepmom had the virus or that she died of the virus. And, in fact, told us that she died of natural causes. And to the point where it was really … we learned about her death, we figured it out, watching the news. Yeah, because she was the only one that was 85. And the state had reported the 8th death being from a nursing home in that area. And so when we put pushed further, we found out that even the funeral home that came to get her body, they had to go through a locked gate, and even they were not told that she had the virus and had died of the virus. And neither had, and they didn’t even, and I don’t know why, but not a lot of precautions were taken at that point. And it was kind of a tricky situation because some of our families work in nursing homes and other nursing homes and so it was, it was a very hot topic for a while. In fact, the local news drove up to my house and asked me for an interview as soon as they heard about it, and it’s been on our news several different nights as the leading story because of the transparency I’ve asked for and that we obviously need. And I don’t know what kind of regulations are, were in effect at that point … They’ve talked about new ones and more being in place, and just listening to you guys talk is exactly what I asked everybody on the news. Everybody listening to ask the nursing homes where they were, had loved ones … to ask them, what way were they going to communicate this with people? Especially if things got going crazy fast and how to find out how they were going to find, how they were going to let them know. And among other things, among the other things that you were mentioning. So my question is … I don’t even know what my question is.

[00:37:04]Jo Ann Jenkins:  Deanna … thank you so much for sharing your story. I think the strength that you were showing by coming out and sharing with others and what you and your family have gone through is … as unfortunate as it is, you telling your story is so helpful to everyone else. And I think one of the things that you hear in Deanna’s story is the underrepresentation of those who have died with this virus that’s either being reported as death of natural causes or are capturing some other kind of death cause because of someone’s age. And I think that is so important. That’s what we say when we get to the issue of transparency, and sharing of information. To think that Deanna’s [stepmom] would die, and then they would hear about it on the news, is just unacceptable.

[00:38:02] And I think what we’re trying to do at AARP is to empower all of you out there who are listening to demand better from your elected officials, and for us to all be in this fight together to make sure that we have access to the information, access to our loved ones, and really, are all working together to make sure that state and local and national governments are really making these nursing facilities share the information that they have at the point and time that they receive the information.

[00:38:42]Susan Lucci:  I’m so sorry that you went through this. This is just horrendous and that they weren’t transparent with you while it was going on. You said that they were fine in the beginning and then they stopped communicating. I don’t, I know they probably, maybe they got overwhelmed. I don’t know. Jo Ann, maybe you can answer this. Do they have to ask for more, more staffing as well? That doesn’t make any sense that you wouldn’t communicate when you started communicating. And who oversees this, and what can you do? How can you make them tell you the truth so that you have a chance to deal with it with as much humanity as you can?

[00:39:22]Jo Ann Jenkins:  Susan, those questions are really, I think, what’s at the forefront of this. You have to remember that we’re all experiencing this pandemic at the same time, and there really isn’t a playbook for us to go by. But I think the more transparent that the nursing facilities can be in sharing information, the more helpful it is to the individual family members and to those administrators who are in charge of the facilities as well, not only at the direct level with the facility, but also at the state level to be able to go through on this. It’s so sad, and it just breaks my heart that Deanna and her family had to go through this. But this is a typical situation that we’re hearing from my members all across this country.

[00:40:15]Susan Lucci:  And that’s what we hope doesn’t become typical going forward. We have to end that being typical. I think Deanna, you going on the news and being honest and you being transparent with what’s happened, hopefully will already make those that can make a difference stand up and take notice and change things going forward. I know it doesn’t help you in your situation. You’ve been through this and can’t change that, but please know that you’re getting out there on the news and telling your story, I hope, in the state of Utah is going to help people. Help change things going forward.

[00:40:49]Deanna:  Yeah, I’m sure it will.

[00:40:51]Michelle Kosinski:  And Jo Ann, are there laws at the state level that dictate what kind of transparency these facilities need to be providing to families?

[00:41:01]Jo Ann Jenkins:  So there are, but it’s not in the level of detail because quite frankly, we haven’t had this kind of pandemic or really assault on nursing homes with these incoming patients at the level that we’ve had in the past. And I think that you see many governors and mayors really trying to put in place, in many cases, laws and guidelines that didn’t exist before. And there’s a lot of learning as we go, and unfortunately, not all of the nursing homes are delivering the service in the same way, either because of lack of funding or a lack of equipment or a lack of staffing. And that’s why we try to get back to those six points … we should make sure that there is a standard of care regardless of where you live, whether you’re in the city or in a rural community; regardless of your income level; regardless of your race or religion; or that everyone has access to the same quality of care all across this country.

[00:42:07]Michelle Kosinski:  Thanks Jo Ann, and both of you, I know we could talk to you all day about this subject since it is so important, as well as so emotional to our families. Do you have time for one more question?

[00:42:19]Jo Ann Jenkins:  Sure.

[00:42:20]Michelle Kosinski:  OK, great. Jean, let’s go to our next questioner.

[00:42:25]Susan Lucci:  Before we go further, I just want to ask Jo Ann, those six questions, which are so, so important. Are they available on your website? Is that the place that people can go?

[00:42:36]Jo Ann Jenkins:  Yes, it’s aarp.org. They can go right there and get access to those questions.

[00:42:44]Susan Lucci:  That’s great. So if enough people across this country are asking those questions, hopefully things can change. Hopefully, they can go forward and change for the better.

[00:42:56]Michelle Kosinski:  Let’s go to Jean.

[00:42:58]Jean Setzfand:  Thank you. So we have one question coming in from YouTube, and this one’s going to both Susan and Jo Ann. The question reads as this: “Has anyone successfully gotten a facility to access an Amazon Echo show device where you can see and talk to a loved one independently? We can’t seem to connect by technology with my mother.” This is Tina from YouTube. So I think broadening that out a little bit, Susan, what’s been your experience with your mom? And then, Jo Ann, what are your thoughts in terms of technology and facilities?

[00:43:32]Susan Lucci:  Yes. Usually what I do is contact the nurse who let me know that such an ability was there; that I could call my mother virtually. And we arrange a time because my mother is not the only resident and there are other loved ones who want to speak to their loved ones. So I arrange a time, and then they actually call me. They call me FaceTime, but it’s on my mother is full screen, and we can speak to her that way. And even having a parent in such a facility, the ability to see them and for them to see you and hear their voice and they can hear yours is so important. And so my heart just goes out to our callers who haven’t been able to speak to their loved ones, especially when everyone was in such turmoil and this COVID-19 was affecting them.

[00:44:27]Jo Ann Jenkins:  And to answer the question, actually AARP Foundation is working on a number of pilots using technology in nursing facilities, and providing free technology to the nursing facility and training of staff so that people in the facility have access if they are physically capable of doing it or assisted by someone in the nursing home to be able to connect with those. And we have actively been engaged with some of the major technology partners around the country to ask, in fact, if they would be willing to provide some of these devices free to the nursing homes to be able to do this. I think that’s so important. And I think the technology community would certainly try to step up to the plate to be able to do those, particularly those in underserved communities.

[00:45:24] I also just wanted to mention, because you hear in the voices of some of the callers who are calling in, this issue of anxiety and perhaps isolation, one of the things that we think is so important. And we’ve set up really two vehicles to try to alleviate some of this; one is our AARP Community Connections. If you type into whatever browser AARP Community Connections, you can go there. And we have set up over 700 what we call mutual aid groups of people in community helping each other, particularly those who have older members in their families.

[00:46:03] And then we also have AARP Friendly Voices. And this is, perhaps you just need to talk with someone, or you know someone who would benefit by having a friendly voice call them and just talk with them and check on them to see. One of the things we’re realizing is there are so many people who are isolated in this country, and while we are self-isolating during this pandemic, there are many people all across this country who have been isolated for long periods of time. We see this as a way for us to check on our neighbors. So if you want to be someone who gets a call, or you want to be someone who calls someone, you can go to AARP Friendly Voices and sign up to be on either end of that communication.

[00:47:09]Michelle Kosinski:  That’s such great information, both of you. I can’t thank you enough for doing this, and I want to thank everybody for calling in with their great questions. And we’re going to get to more questions soon, but I know both Susan and Jo Ann need to leave, so before each of you head out — and we bring in our next guest — do you have any closing thoughts you want to share? Susan, want to start with you?

[00:47:23]Susan Lucci:  I would just like to say how really impressed I am with the things that Jo Ann and AARP, under her direction, are doing. Really concrete answers to the questions and things that people can actually do to try to help the situation going forward. Jo Ann, I’m so thrilled to be part of this process with you, a small part. What you’re doing is so important, and I’m so happy to be part of this. And thank you for asking me to join you.

[00:47:45]Jo Ann Jenkins:  Thank you, Susan. And I just wanted to extend my thanks for Susan sharing her story with her mother and her family, and congratulations on your new grandchild. That’s so exciting. And to all of our members out there, we at AARP want you to know that we consider it an honor to be that fierce defender for you, whether it’s here in Washington or perhaps it’s in your neighborhood or at the state level. It’s so important that you empower yourselves with the right kind of information that you need to know to make the best decisions for your family. And we are honored that our 60,000-plus volunteers all across this country are also working there in the community trying to provide information and guidance and service. We thank you every day for being a part of AARP, and we ask you to stay home and stay safe, and hopefully we’ll get through this pandemic sooner rather than later.

[00:48:52]Michelle Kosinski:  Thank you both so much for sharing all those thoughts with us. I know that helped many people out there. And now we’d like to bring into additional expert guests to the conversation. Bill Sweeney is senior vice president for government affairs at AARP, where he leads the organization’s advocacy efforts on behalf of older Americans at the state and federal level. Before joining AARP, Bill spent nearly 20 years working on Capitol Hill in the U.S. Senate and in a number of senior positions.

[00:49:21] Also, we have Lori Smetanka, the executive director of the National Consumer Voice for Quality Long-Term Care. That is the leading national nonprofit advocacy organization representing consumers who are receiving long-term care and services in nursing homes, assisted living facilities, and home and community-based settings. Welcome to both of you. Thank you for joining us, and let’s jump right in.

[00:49:44] So first of all, Bill, earlier we heard AARP CEO Jo Ann Jenkins address some of these questions that people should be asking; six of them she had, and you can find them on the AARP website as well. Can you remind us what those are and what happens if you’re not getting answers, or if you don’t trust the information you’re getting? And I’ll tell you that has been a real problem in so many ways throughout this crisis.

[00:50:16]Bill Sweeney:  Michelle, thank you so much. Those questions are so important for families who are terrified right now about what’s happening in nursing homes. And you can find them on our website at aarp.org/nursinghomes.

[00:50:30] The first one is really, has anyone in the facility tested positive for COVID-19 — and this includes the staff. What is the nursing home doing to prevent infections? Does the staff have access to testing, to personal protective equipment like masks and gowns? What’s the facility doing to help families keep in touch with their loved ones right now? This is an issue we’ve heard so many times on this call already. What’s the plan for nursing homes to communicate important information, and what’s the nursing home staffing levels right now? We’ve heard so many facilities are really having a challenge there, and when people need to help, certainly in a confusing and scary time like this, it’s so important. So again, those questions are all up on our website. AARP.org/nursinghomes.

[00:51:18]Michelle Kosinski:  So if you’re not getting the answers you need or you think you’re getting some shady information from your facility, what do you do then?

[00:51:28]Bill Sweeney:  Every state has what’s called an ombudsman who is responsible for looking out for issues in those nursing homes. So you can go online, look up your state’s ombudsman or your state Department of Health. You can reach out to the Departments of Health, either the state or your local Department of Health, and they can give you a little bit more information as well. They’re the ones who directly oversee these facilities. So if you are having problems or if they’re not being transparent, there is someplace that you can go to get some help.

[00:52:00]Michelle Kosinski:  And as a journalist, I want to say to everyone out there, if you have a problem, you can also contact your local newspaper, your local TV news, because sharing information is a great way to get problems solved as well. So a little plug there for journalists. But speaking of which, Bill, we’re seeing news reports about efforts to protect nursing homes now from liability due to the coronavirus. What do you think about that? And is that the right move?

[00:52:29]Bill Sweeney:  I think we’ve already heard some of the heartbreaking stories that have happened in nursing homes and assisted living facilities. It’s so early, still. You know, it feels like we’ve been doing this for a long time, but in reality, it’s only been a month and a half. And so there’s so much we don’t know. Just yesterday, the government accountability office put out a study that found that before the COVID-19 pandemic, 82 percent of nursing homes had been cited for poor infection control practices. This is basic stuff like washing your hands in between patients.

[00:53:02] What’s happening in nursing homes, the residents’ health and safety and quality of care has just been at such a risk. And so AARP is calling on Congress to protect the safety of residents, including by maintaining the rights of residents and their families to seek legal redress, to hold facilities accountable when people have been harmed or neglected or abused, or when family members can’t get the information that they deserve. It’s just way too soon to be granting immunity to facilities until we know a lot more.

[00:53:34]Michelle Kosinski:  Good point. Lori, let’s bring you into the conversation now. Nursing homes have basically prohibited families from visiting residents during the pandemic. So what can families be doing to better communicate with loved ones? What should the facilities be doing to help these communications happen? And is enough of that happening right now?

[00:53:56]Lori Smetanka:  Thanks so much, Michelle, thanks for having me and what a great conversation this has been so far today. We have been hearing the importance of communication between residents and families and between facilities and families. And we know that it’s been very difficult for the families and residents not to be together during this time. In fact, we are hearing that the isolation has led some residents to being withdrawn and depressed, and communication can help that. And the nursing homes have a responsibility to help the residents communicate with their family members. And there are a number of ways that we can make that happen. We heard Susan’s example of using video chat, which has been very successful and popular for all of us to stay connected with loved ones and friends during this time. And that can happen in the nursing home as well, using either the resident’s own phone or computer or tablet if they have one, or by using one provided by the facility. And in addition to the work that AARP Foundation has been doing to help get devices into the hands of nursing homes and residents, those nursing homes that don’t have devices can apply for special funding from the federal government to purchase them.

[00:55:09] So we also know that some residents need help accessing the phone or the video connection, and staff should be helping them do that, making appointments with family members. Some facilities have designated staff that they’re using to help with that. And so that’s really important that they really help maintain those connections. If you can’t do a live video visit, we know some people who are sending recorded audio or video messages to the nursing home to play for their loved ones; you can tell them hello, you can tell them you love them. They can see your face and hear your voice, and it’s something that can be replayed over and over for them. It’s something that can be kept.

[00:55:51] Communication can also be done with the window visits. We’ve been seeing pictures and photos of that on the news. …In many places that’s been successful. We would say that if that is something that you would like to do, you communicate that intent to the facility and also to your loved one — that you would like to come and do a window visit — so that they don’t get frightened by a person just showing up at their window. And think about the time that you go and do that. Is it a convenient time for the resident? Make it during the day. Don’t go when it’s dark, so they can’t see who you are if you’re outside the window.

[00:56:25]Michelle Kosinski:  Yeah. Someone knocking on the window at 2 a.m. That wouldn’t work.

[00:56:28]Lori Smetanka:  Right.

[00:56:29]Michelle Kosinski:  Got it.

[00:56:30]Lori Smetanka:  Exactly. And then the last thing I would say is that you can also send cards, letters or drawings to residents to let them know that you’re thinking about them. Maybe have your children send them some cards and letters and drawings; that’s another great way to communicate.

[00:56:45]Michelle Kosinski:  Definitely. Bill, did you want to add anything on that subject?

[00:56:50]Bill Sweeney:  I echo everything that she just said, and I just wanted to say … AARP is fighting in Congress to try to get legislation passed that would make this more of a priority, both for visiting your loved ones, but also for telemedicine. It’s called the Access Act, and it’s bipartisan. It’s in the House and the Senate; Democrats and Republicans are all supporting it. And we are really hopeful that this gets included in the next round of legislation that gets passed. It’s 2020. Everybody’s using this kind of technology to stay in touch. And it’s great when there are facilities that do, but we’ve heard already one of the questions, someone who just wasn’t able to get the facility to let them use the device. And so we really need this to be something that’s universal, that everybody in America can stay in touch with their loved ones in these really scary times.

[00:57:43]Michelle Kosinski:  How receptive would you say the federal government is right now to your advocacy on all of these issues?

[00:57:50]Bill Sweeney:  I think they’re listening to older Americans, especially right now. They understand that this is hitting older Americans harder than anybody else. I think Congress is beginning to catch on as they read the stories. And as these horrible numbers come out of nursing homes, the terrible death toll, I think it’s beginning to become a bigger issue. And what we’re doing at AARP is really trying to make sure that people are reaching out. And I should have mentioned this earlier; you mentioned the press. If people aren’t getting help or if they’re having a problem with a nursing home or an assisted living facility, pick up your phone and call your member of Congress. I worked on the Hill for 20 years. Every office has people whose job it is to help families navigate these kinds of complicated issues. And they can be real allies in your efforts as well. So pick up the phone, call your member of Congress, tell them your story, and you can join the fight with us at aarp.org/nursinghomes. We have a little link there where you can send an email to Congress and urge them to make a bigger focus on this in the next package.

[00:58:57]Michelle Kosinski:  Very true. And Lori, we talked about some of the questions to ask facilities, but ultimately, if you’re thinking about removing a loved one from a nursing home or assisted living facility, what kind of considerations would you say are most important when you’re making that decision?

[00:59:16]Lori Smetanka:  I know many families have really been struggling with whether or not to take their loved one out of the long-term care facility during this crisis. It’s a very personal decision, and one for which I can’t emphasize enough that really you should have a plan in place before you do that. So there are some things that people should consider when making the decision about whether to bring their loved one home. First of all, do they want to come home with you? We think that residents often can say what their preferences are with respect to this. But think also about whether your home or wherever you’re going to be taking the resident who is equipped for them. Can they maneuver in the rooms, in the bathroom or manage the stairs? Do you need special equipment, like a hospital bed or a wheelchair to help them get around? Who’s going to provide the care that the person needs? Many residents need help with very personal care needs, including eating, bathing and toileting. Who is going to help them with those things? Are you capable of doing that? Can you help them transferring and lifting them between the bed and the chair, for example. Can you do that yourself? Or do you need to hire someone to do that? And how much will that cost you? And will that person be available, to help you? So you need to be thinking about how you’re going to be providing the care.

[01:00:36] Think about who’s going to be providing the medical care and oversee your medications, for example. Some residents rely on the facility’s medical directors as their personal physicians. So do you need to find a doctor in the community who can oversee their care and maybe make arrangements for that in advance? And then think about what happens if the resident needs more care than you’re able to provide? Can you bring in additional help at that point? Do they need to return to the long-term care facility? And what’s that process going to look like? Can they go back to their original facility, or will you need to find a new place for them?

[01:01:12] And then also, has the resident been tested for COVID? And have they tested negative? Have the members of your household tested negative? You do not want to be exposing them. If you’ve not been tested, and you don’t also want to be exposed if they’ve not been tested. So those are some important considerations.

[01:01:30] I mean, certainly the last thing I would say is if you are thinking about bringing your loved one home, understand that it might be for several weeks or even months that the loved one is going to be living in your house, and just make sure that you’re equipped to provide the best care possible for them. We want to keep them safe and we want to make sure that you’re doing that in a coordinated effort and have a plan in place to do so.

[01:01:54]Michelle Kosinski:  That just highlights the tough questions and situations that so many people are dealing with right now in addition to everything else surrounding coronavirus. And I know a lot of people are eager to talk to both of you. So let’s go to more questions now. Jean, is there somebody waiting?

[01:02:20]Jean Setzfand:  Yes. We have lots of calls. Our first caller is Patty from Illinois.

[01:02:25]Michelle Kosinski:  Hello, Patty. Welcome. Hello, Patty, can you hear us?

[01:02:32]Patty:  Yeah, can you hear me?

[01:02:34]Michelle Kosinski:  Great. We can hear you now, right?

[01:02:38]Patty:  So my question was about this: I looked at your six questions, the AARP six questions for asking the nursing homes, and I’m curious why asking them about their testing availability and plan and schedule isn’t on that list. My mom is in a facility that, according to all those other questions, they’ve been very transparent … they had all the PPE they said that they had in place, and yet they still went from one employee who tested positive to 55 residents and 38 associates like in less than three weeks. And they couldn’t obtain the testing that they needed to in the facility. And I just … obviously it sounds like there had to be some sort of breakdown in PPE as well, but what can we do about the testing situation?

[01:03:47]Michelle Kosinski:  I think this is a question for both of you, probably.

[01:03:51]Bill Sweeney:  This is so heartbreaking, and I’m so sorry to hear that. This is extremely frustrating, and I absolutely agree with you that it’s sort of implicit in the question of asking them if anyone’s tested positive — whether they’re testing people. And that really does include the staff. When the staff who are working in these facilities, if they test positive that they can be very … it’s really important that they’re doing that testing so that people aren’t spreading this around in a nursing home environment. So, that’s absolutely important.

[01:04:23] The federal government is working on getting … they’ve made some announcements that they’re going to be doing a wide scale effort to do more testing in nursing homes. This is really something that should have happened already. It is long past time. We’re focused on this — very carefully watching and advocating with the federal government to make sure that this gets done, that the tests are in these facilities as well as that PPE. … We’ve heard all these stories about people who can transmit this virus without even knowing it or without showing any symptoms. That’s why PPE is so important, especially for the staff who have to go from resident to resident. It’s really important that not only do they have the equipment, but they’re trained properly about how to use it. So this is why that study we heard yesterday that 82 percent of nursing homes have been cited for poor infection control practices was so alarming. And so it’s very important that we get this sorted out and then we get the testing and the PPE right away.

[01:05:31]Lori Smetanka:  Absolutely. … We know that states and the federal government certainly have been working on this issue. But as Bill noted earlier, continue to share your stories with your members of Congress and your elected leaders, really to emphasize the importance of getting these tests and this equipment into the nursing homes. The more they hear from you and the more they hear your stories, hopefully, the more we can do to get it there.

[01:06:00]Michelle Kosinski:  Definitely. Jean, did we have another caller?

[01:06:04]Jean Setzfand:  Absolutely. We have Emma from Mississippi.

[01:06:06]Michelle Kosinski:  Hi, Emma. Welcome to the call.

[01:06:09]Emma:  Hi, thank you, and thank you AARP for these weekly calls. They really, really do give us a lot of valuable information. Most of my question has been answered. I just wanted to know what alternatives we have when we don’t get the right answers, or when the answers don’t pan out, just like our former caller. Because we are pretty much in a bind when we have to find a nursing home for a loved one. We don’t have a lot of shopping opportunities.

[01:06:47]Bill Sweeney:  That’s a great point. And I’ve seen a couple of the other questions as well that are asking about this. If you’re having this challenge of getting through, again, calling your Congress, a member of Congress is so important, calling your state legislators, your state representatives, state senators, call anybody who will answer the phone. I think that people need to hear these stories. But I also want to make sure you know that there’s a resource available for those long-term care ombudsman that I mentioned earlier. It’s NASOP.org. And that’s where you can find the list of the ombudsman in your community.

[01:07:32]Michelle Kosinski:  Good to know. Let’s go to another caller.

[01:07:37]Jean Setzfand:  We have some questions coming in from YouTube. This one is coming from Linda, and she’s asking, “We’re afraid of poor treatment for our loved one if we complain. What do I do about that?”

[01:07:49]Michelle Kosinski:  Ah, that’s a good one. What do you guys think?

[01:07:54]Lori Smetanka:  Certainly I would suggest if you have concerns about the care that your loved one is getting, raise those with the facility. Share your concerns, be specific about what your issues are. Be factual about them, so that you’re not being overly emotional in sharing that information. So be specific about what the issues are and ask them what they’re going to do about it. Ask for a care plan meeting about how they’re going to address the issues that you are having with your loved one. Complaints can be filed with the long-term care ombudsman program, as has been mentioned, and they can help you address some of the concerns that you may be having related to care as well. And so you can find the information both on the NASOP website which Bill had shared, and also through the Consumer Voice’s website, which is at theconsumervoice.org. And we both share the information about the long-term care ombudsman program in the country.

[01:09:03] And you can also file a complaint with your state licensing agency if you have concerns about the care that your loved one is receiving. Right now they are targeting only certain types of complaints that they are looking at, but it’s important to register those complaints, and have them review them once they’ve started looking at all complaints again.

[01:09:22]Michelle Kosinski:  You can also talk to people, other people who have loved ones in the facility. There’s always strength in numbers, and for a lot of these organizations that are advocates or even your local news, you can always report things anonymously if you worry about things like that. And both Bill and Lori, I know that a lot of questions are coming in about this ombudsman, so I’m really happy that both of you have brought that up and explained it, but people have even more specific questions about what exactly the ombudsman can do, and how that could help the situation. Are there any examples of the types of things that the ombudsman can at least help to resolve?

[01:10:05]Lori Smetanka:  Sure. So long-term care ombudsmen are federally mandated advocates for residents of long-term care facilities. They’re a free service. They exist all over the country. Every state has a state program, and they are scattered throughout communities as well. They exist in communities. So you can call them with any type of question or issue that you may have with a facility; anything from poor care services, if you have concerns about discharge or rights violations, the ombudsman will help you work through any of those issues. They will talk to the residents. They’ll often talk with the family members and see what it is that you would like to have happen in that particular situation. How will the problem be resolved to your satisfaction? And then they’ll help you work through that. They can work with the facility and mediate issues with them. They can remind them of what their rights and responsibilities, what their responsibilities are in terms of providing care. They share information about what good care looks like. And they also remind again the facilities about what it is they’re supposed to be doing to provide care for the resident and can help them achieve that. So they’re a very valuable resource in communities. And we would highly encourage you reach out to them, not only for information, but if you do need some help in your facility.

[01:11:34]Michelle Kosinski:  That’s great information and I want to thank people for their questions because your questions and then the answers to them help so many more people out there who might be listening and who have the same issues that you’re having. And this coronavirus pandemic has reinforced how important it is to have connections to our communities as well and to each other. AARP, in fact, provides a lot of opportunities to connect with your community and to one another without leaving your home. So if you want to try virtual offerings like movie watch parties, coffee chats, even exercise classes, remember you can visit aarp.org/nearyou [and near you is all one word].

[01:12:23] So let’s get back to more of your questions and hear from everyone out there. Again, that has been a great part of this. Jean, who’s next?

[01:12:40]Jean Setzfand:  We have Hercules from Pennsylvania.

[01:12:42]Michelle Kosinski:  Hi Hercules, welcome.

[01:12:45]Hercules:  Hi there. Most of my question’s been answered already, so I just wanted to share something briefly about a client that did get the virus and passed away. And the interesting thing is the family did not hold anything against the community. It’s a really great community. And I know they did everything they could. It was in the memory care side, where it is more difficult to manage social distancing. But what happened is, what they didn’t like is that the week before there was an issue with their sister’s … cell phone, and staff somehow didn’t react fast enough to at least give them a chance to speak to [inaudible]. Now nobody knew she would contract the virus, but that’s the one thing that they’re really feeling the saddest about. They didn’t have a chance to communicate after that point. So it’s just a small thing, but it’s just, everybody was in panic because they had their first case the week before. But at the same time, unfortunately she didn’t reach out to me because I’m a little bit more tenacious than average. But that is the one thing, they didn’t hold it against the community cause they know the rules and the policies and procedures were top-notch, but it’s just not, didn’t have the ability to communicate with their sister up to the week before. Anyway, that’s just something I wanted to share.

[01:14:11] But the only other thing is I’m dealing mainly with … skilled nursing facilities as somebody refer people to me for independent living and assisted living and memory care. And I have had some inquiries because not everybody has a choice to spend … 16 hours a week is like $200 a week on, or $400 a week typically on in-home care. And to your point, it’s very, very helpful what you summarized in terms of what to consider before you bring somebody home. So while nobody, not everybody has the choice of staying at home, some people have also inquired because they can’t cope with the loneliness, so they’d rather be in a community where there are some services. However, we’ve tried to from our side — I’m with a placement agency and I’ve been, I have a quite a network of people I work with — to compile questions as well that we would have not necessarily asked only to a nursing community, but to an assisted living and independent living community. Are there any top-of-mind questions in addition to the testing and the policies that you would ask an assisted living community or memory care community, where that’s often the case where people don’t have that many choices left, in addition to what you have already said there. And previously you said — have you been tested first, what’s your PPE, what’s your current staffing and all that? What else would you ask an assisted living or independent living or a memory care community?

[01:15:53]Bill Sweeney:  Hercules, thank you for that question. I first want to say that one of the things we’ve been fighting for at AARP for a long time, is to actually give people more choices so that they don’t feel like a nursing home or an assisted living facility is their only choice if they do need that kind of specialized care. And so all around the country in every state and at the federal level, we’re advocating for more access to home and community-based care — to make it so that that’s more affordable, that people who don’t have the resources can take advantage of that as well. I think it’s so important that if families can take care of their loved ones at home, or if a loved one or an individual can stay in their home, that they have the ability to do so. But if they can’t, and they really can’t, and their families reach that situation where they have to think about what’s next, I think that the six questions on the website are really a great first step and to see where that takes you with your conversations. You know, really understanding whether the facility is prepared, and I also think doing some research, talking to some other folks, getting references and really making sure that this is a facility that has a good track record — and we certainly know that those are out there, that the facility has a good track record, and that they’re really committed to putting the patients first.

[01:17:15]Michelle Kosinski:  That’s great information. Let’s go to Jean for some more calls.

[01:17:20]Jean Setzfand:  Our next caller is Barbara from Illinois.

[01:17:23]Michelle Kosinski:  Hello. Barbara. Welcome.

[01:17:26]Barbara:  Hi. Thank you. I was very enlightened when I heard what the gentleman was talking about. That kind of helped me a lot, so to pass on what I can to do from here in Chicago, Illinois, a foster grandparent volunteer program.

[01:17:46]Michelle Kosinski:  Great. Do you have a question for Bill or Laurie?

[01:17:51]Barbara:  My question is that will he be able to let us know about what we can do as volunteers to help … since the people on the front line, maybe we can do something to protect our self and then to help them as well; so helping out people at the different hospitals and places like that. What can we do in Illinois?

[01:18:20]Michelle Kosinski:  Great question. Maybe Lori, you want to take that?

[01:18:27]Lori Smetanka:  Certainly, I think that being engaged with your community is important, and in terms of helping out your community, I would recommend maybe you get in touch with your AARP chapter in your area to see if there are certain needs that they have that potentially you could volunteer with. Being connected to your community leaders; I know that there are a lot of opportunities for people to volunteer right now in their communities with food banks and with different community services to help people as well. So, looking at your community resources might be your best bet.

[01:19:10]Michelle Kosinski:  Good to know.

[01:19:11]Bill Sweeney:  I want to make a pitch. You know, Jo Ann Jenkins, our CEO, mentioned this earlier as well. If you go online and look up AARP Community Connections, it’s a really great opportunity. They’re called mutual aid groups where individuals can help their neighbors and help others who are in need right now and who need some help. So just something to think about as well, if you’re looking to get involved in your community.

[01:19:36]Michelle Kosinski:  That’s great. Jean, who else is out there?

[01:19:39]Jean Setzfand:  We have Victoria from Idaho.

[01:19:42]Michelle Kosinski:  Welcome Victoria.

[01:19:48]Victoria:  Thank you for taking my call. My husband and I will be shortly moving into assisted living; my husband has Alzheimer’s and I have physical problems, so it’s really necessary. But the problem I’m having is that the facility we chose just had an outbreak of the C virus — only one employee, but nonetheless, I’m a little apprehensive.

[01:20:41]Michelle Kosinski:  Hmm.

[01:20:42]Victoria:  Maybe I shouldn’t. Because they locked down the facility for all mixing of everybody.

[01:20:53]Michelle Kosinski:  Got it. So you’re wondering if you should even be using that facility? Bill or Lori, do you want to weigh in on that?

[01:21:06]Lori Smetanka:  Sure. I think it’s important for the caller to talk to her contacts at the facility and the administration, and really get some good information from them about how they are working to protect the residents and the staff from the spread of the virus from further people contracting it. And ask them to talk through with you their specific plan on what that looks like. Many facilities do have good plans in place where, they are separating people who have been isolated. They’re working on testing the staff and the residents to keep on top of how many people either have contracted it or who’s turning out positive and negative. They’re making sure that they have enough protective equipment on hand, so certainly it’s important to get as good information as you can about what is happening there. And certainly, think about the timing of your move. If you’re concerned at this point about moving into the facility right away, do you have options to maybe delay for a short period of time, before you move into this particular assisted living facility.

[01:22:27]Michelle Kosinski:  And also, I guess at this point, depending on where you live, it could be hard to find any facility that hasn’t had at least one case, I’m sure. So it’s all in how they’re handling it, I guess, isn’t it?

[01:22:40]Lori Smetanka:  Sure. Absolutely. I think the six questions that have been talked about today that AARP has put out are really excellent ones to be asking the facility administrators, and asking them how essentially they are protecting their residents and the staff from further spread of the virus.

[01:22:59]Michelle Kosinski:  I think we probably have time for another question or two. Jean, do you have someone else out there?

[01:23:04]Jean Setzfand:  Yes, we do. Ruth from Mississippi.

[01:23:09]Michelle Kosinski:  Oh, good. Another Mississippian. Hi, Ruth.

[01:23:12]Ruth:  Hi. This question can be either for Bill or Lori. You talked about assisted living facilities, and you’ve talked about long-term care, but what is AARP doing for those who are in adult day care facilities?

[01:23:30]Michelle Kosinski:  Good question.

[01:23:31]Bill Sweeney:  Thanks Ruth. And I’m glad you brought that up because it’s an issue that we are focused on as well. When we talk about these — and I apologize because we talk about long-term care, we talk about nursing homes — we sort of do that as a shorthand. When we talk about that, we mean all of those things, all of those different, the continuum of settings where people are getting care. And the people who work in this space call it long-term services and supports, which is a bit of a mouthful, but we sort of use some shorthand when we talk about it. When we’re talking to policymakers, we’re talking about all of those things. And so, you’re absolutely right to be focused on that. It’s really the same kind of questions. It’s the same kind of the same kind of issues; making sure that people have the PPE that they need, that they’re doing the testing really anywhere where people are coming together. These are situations where we really need to have good infection control practices right now. We have to have the testing, we have to have the staffing, and we need people to be able to have choices to choose the right setting that’s right for them. And so those are all really important. And I’m glad you brought that up.

[01:24:42]Michelle Kosinski:  OK, Jean. Let’s take another caller.

[01:24:46]Jean Setzfand:  Rhonda from Virginia.

[01:24:48]Michelle Kosinski:  Hi, Rhonda. Welcome.

[01:24:50]Rhonda:  Hi. Thank you so much for taking my call. So my mom is in an assisted living facility here in the state of Virginia, and unfortunately, they’ve been in operation, this facility, almost two years now. They’ve had four or five changes in their senior leadership team in that time. Their whole staff has turned over, and they have not obviously been transparent throughout these couple of years. I have had the opportunity to talk to my ombudsman, who bounced me around between the Health Department and the Office of Aging with specific COVID questions. So I’m really at the point where I love the idea of perhaps reaching out to the congressman, but I was also curious if Bill might have some other ideas of how I could help to advocate not only for my mom, but for others, both within the state of Virginia and perhaps nationally. And I really don’t know how to get involved. So what can I do and how can I get involved?

[01:25:52]Bill Sweeney:  I’m so sorry to hear that — and it’s, I’m sorry to say, a story I’ve heard more times than I would like to recount in the last month and a half. I mentioned earlier, aarp.org/nursinghomes. We have an ability for you to go there and send an email to Congress and to get involved. That’s one way. I do think that calling your member of Congress is a great idea, calling your state representative — I guess in Virginia they called them delegate — or your state senator is a really good idea. Calling your governor’s office is a good idea. I think someone mentioned earlier tenacity, having the tenacity, and fighting for that. Unfortunately, I wish he didn’t have to do that, but in a situation like this, if you’re not getting the answers you need, that’s a good way to do it. But again, aarp.org/nursing homes is a great way to start, to get started, and I know that Lori’s organization and others are also great places to get engaged if you want to be part of this effort.

[01:26:55]Michelle Kosinski:  Bill and Lori, do you have any closing thoughts or recommendations that AARP members should understand most — some good takeaways from our conversation today? You want to start, Lori? Oh, go ahead, Bill.

[01:27:09]Lori Smetanka:  Sure. Go ahead, Bill.

[01:27:11]Bill Sweeney:  Thanks, I just want to remind everybody to get involved. Look, the issue is that members of Congress, people and these policymakers, decision makers, they really do respond to the people who are reaching out. And I know as a family member with someone in a nursing home, we often don’t think of calling if we’re having a problem with the nursing home — we don’t think to call our member of Congress, but these are facilities that take federal dollars; they take Medicaid, they take Medicare money. They’re regulated by the federal government. At some level they’re regulated by the state government. These are places where calling your member of Congress really does make sense. And I can assure you that they take it seriously, that when constituents call with these kinds of problems, members of Congress really do listen and pay attention. So I hope that you’ll take an opportunity to do that and to get involved. And again, aarp.org/nursinghomes has some great resources for you on this.

[01:28:09]Michelle Kosinski:  I agree with that. Members of Congress can really make things happen, especially in an emergency. And how about you, Lori? What would you like to say in closing?

[01:28:18]Lori Smetanka:  I think that families certainly need to maintain open communication, not only with their residents, but with the facilities and to really push them to be communicating with families on an ongoing basis. We hear good examples of how that’s working across the country, and I’ve been trying to share some of those on our website as well. Again, that’s at TheConsumerVoice.org. But I think the other thing I’d like people to remember is that even during this crisis, the residents of long-term care facilities are entitled to receive good care and services that meets their needs — both their physical needs and their emotional and their mental well-being. And that we need to be paying attention to the fact that they do have rights during this time, that their needs should be met, and for the families to stay active and proactive in ensuring that their loved ones are receiving good care.

[01:29:18]Michelle Kosinski:  That is great. Great information to close us with. So this has been such an informative discussion. I think there were a lot of subtopics that were covered. So thank you so much to each of you for answering these questions. Also, thank you to our AARP members, volunteers and our listeners for joining us. AARP, a nonprofit, nonpartisan member organization has been working to promote the health and well-being of older Americans for more than 60 years. In the face of this crisis, AARP is providing information and resources and fighting for older adults and those who are caring for them. All of the resources that we referenced here, including a recording of today’s Q&A, can be found at aarp.org/coronavirus on May 22. We’re off next week and returning June 4 with another informative and essential conversation about navigating all this during coronavirus. I want to thank you all, and this concludes our call.

[01:30:19]

May 21: Special Coronavirus Tele-Town Hall on Caregiving

Caring for Loved Ones in Care Facilities with special guests Emmy-winning actress and New York Times best-selling author Susan Lucci and AARP CEO Jo Ann Jenkins

Last week’s live Q&A event addressed the national tragedy of 30,000 deaths from the coronavirus occurring in nursing homes and long-term care facilities, and ongoing concerns for the safety of, and ability to connect with, loved ones in these facilities.

Actress Susan Lucci shared the story of her 103-year-old mother living in an assisted living community during the pandemic, and AARP CEO Jo Ann Jenkins outlined AARP’s efforts to support family caregivers and protect residents and staff in these facilities. This conversation  was followed by a panel discussion with experts who answered  listeners' questions.

Listen to a replay of the event above. 

The Experts

Susan Lucci
Emmy-Winning Actress,
New York Times Best-Selling Author

Jo Ann Jenkins
Chief Executive Officer, AARP

Michelle Kosinski
Moderator, 
Emmy-Winning Journalist

Lori Smetanka
Executive Director,
The National Consumer Voice for Quality Long-Term Care

Bill Sweeney
Senior Vice President, 
Government Affairs, AARP


For the latest coronavirus news and advice, go to AARP.org/coronavirus.


  • Nov 12 - Coronavirus: Coping and Maintaining Your Well-Being
  • Oct 1 - Coronavirus: Vaccines & Coping During the Pandemic
  • Sept 17 - Coronavirus: Prevention, Treatments, Vaccines & Avoiding Scams
  • Sept 3 - Coronavirus: Your Finances, Health & Family (6 months in)
  • Aug 20 - Your Health and Staying Protected
  • Aug 6 - Coronavirus: Answering Your Most Frequent Questions
  • June 18 and 20 - Strengthening Relationships Over Time and  LGBTQ Non-Discrimination Protections
  • June 11 – Coronavirus: Personal Resilience in the New Normal
  • July 23 - Coronavirus: Navigating the New Normal
  • July 16 - The Health and Financial Security of Latinos
  • July 9 - Coronavirus: Your Most Frequently Asked Questions
  • June 18 and 20 - Strengthening Relationships Over Time and  LGBTQ Non-Discrimination Protections
  • June 11 – Coronavirus: Personal Resilience in the New Normal
  • May 21 – Coronavirus: Caring for Loved Ones in Care Facilities With Special Guests Susan Lucci and Jo Ann Jenkins
  • May 14 –  Coronavirus: Veterans & Staying at Home With Lifestyle Experts
  • May 7 – Coronavirus: Protecting Your Health & Bank Account and Managing Your Career, Business & Income
  • April 30 – Coronavirus: Caring for Parents, Kids & Grandkids
  • April 23 – Coronavirus: Supporting Loved Ones in Care Facilities and Disparate Impact on Communities
  • April 16 – Coronavirus: Telehealth
  • April 9 – Coronavirus: Coping and Maintaining Your Well-Being
  • April 2 – Coronavirus: Managing Your Money and Protecting Your Health
  • March 26 – Coronavirus: Protecting and Caring for Loved Ones
  • March 19  Coronavirus: Protect Your Health, Wealth and Loved Ones
  • March 10 – Coronavirus: Symptoms. How to Protect Yourself, and What It Means for Older Adults and Caregivers