1 00:00:02,000 --> 00:00:04,300 AMNA NAWAZ: We heard earlier from some front-line health care workers, but let's turn now to 2 00:00:04,300 --> 00:00:09,166 a different kind of essential worker, a few of the more than 50 million caregivers in 3 00:00:09,166 --> 00:00:12,700 this country who provide help to loved ones or to clients. 4 00:00:12,700 --> 00:00:17,200 We spoke with some who volunteer, who work in-home, and some family caregivers to hear 5 00:00:17,200 --> 00:00:19,333 what their past few months have been like 6 00:00:19,333 --> 00:00:24,133 MATT BERZOK, Caregiver: My name's Matt. My son Ben is a 16-year-old with autism. 7 00:00:26,133 --> 00:00:30,166 When the pandemic started, Ben went from being fairly structured and programmed to all of 8 00:00:32,066 --> 00:00:35,400 a sudden having no structure. It was pretty anxiety-provoking, especially for Ben, who 9 00:00:36,833 --> 00:00:39,300 over time got more and more anxious. 10 00:00:39,300 --> 00:00:42,866 CECILY BAKER, Owner, Be Patient Caregiving: My name is Cecily Baker. I am the owner of 11 00:00:42,866 --> 00:00:45,666 a business called Be Patient Caregiving. 12 00:00:45,666 --> 00:00:49,800 Being a caregiver in this pandemic is all about trust. The families are worried. We're 13 00:00:49,800 --> 00:00:54,766 listening to the media about people dying left and right in nursing homes, assisted 14 00:00:56,200 --> 00:00:58,500 living, and in home. That can affect your mental health. 15 00:00:58,500 --> 00:01:01,933 MARIA ORTIZ, Alzheimer's Association of Greater Cincinnati: My name is Maria Ortiz. I am a 16 00:01:01,933 --> 00:01:06,933 volunteer member for the Greater Cincinnati chapter for the Alzheimer's Association. 17 00:01:08,866 --> 00:01:12,033 My father passed away from Alzheimer's in 2014. It's a way not only to honor his memory, 18 00:01:13,866 --> 00:01:17,800 but also to be a voice out there, to say to others, you're not alone. There's help. 19 00:01:19,800 --> 00:01:22,966 EMILY PARSONS, Caregiver: My name is Emily. My son James was diagnosed with a terminal 20 00:01:23,833 --> 00:01:26,433 genetic condition six years ago. 21 00:01:26,433 --> 00:01:30,266 We do get 24-hour skilled nursing care. However, with the pandemic, we haven't always had skilled 22 00:01:32,266 --> 00:01:36,400 nurses that were cleared to come into the home. You don't have any escape. You're constantly 23 00:01:37,866 --> 00:01:41,066 in that caregiver role. There is no break. There's no rest. 24 00:01:41,066 --> 00:01:46,033 ANNE ADKINSON, Caregiver: My name is Anne Adkinson. I live in Oregon. And I am the caregiver 25 00:01:47,233 --> 00:01:50,066 for my husband, who is a disabled veteran. 26 00:01:50,066 --> 00:01:55,033 He served in Iraq in 2003. I feel like we kind of got into a groove with the caregiving 27 00:01:57,300 --> 00:02:02,266 routine over the last couple of years. But the pandemic has definitely put a wrench in 28 00:02:03,400 --> 00:02:05,533 all of that, with having the kids home. 29 00:02:05,533 --> 00:02:08,333 MATT BERZOK: At one point, he was so angry, that he ended up biting me. And I walked around 30 00:02:08,333 --> 00:02:11,600 with a bruise on my shoulder for the better part of a month. 31 00:02:11,600 --> 00:02:15,766 Even though I might not have chosen this, he's made me so much of a better person, brought 32 00:02:15,766 --> 00:02:20,766 me joys that I never thought I could have, and sadness that I didn't expect either, but 33 00:02:22,733 --> 00:02:24,933 has also taught me a lot about life. 34 00:02:24,933 --> 00:02:29,466 CECILY BAKER: So, they want to know, what are we putting in a place to make sure that 35 00:02:29,466 --> 00:02:31,566 their loved one is safe? 36 00:02:31,566 --> 00:02:35,100 We are getting our caregivers tested. And we have asked the families if they would like 37 00:02:35,100 --> 00:02:37,100 to join. 38 00:02:37,100 --> 00:02:39,900 MARIA ORTIZ: Caretakers feel that they are not doing the proper care sometimes or they're 39 00:02:39,900 --> 00:02:44,200 not going beyond what they should be doing. And that burden is very heavy. 40 00:02:44,200 --> 00:02:49,200 And now, with the situation of COVID-19, having people coming and support the caretaker has 41 00:02:50,666 --> 00:02:53,100 been a little bit more limited, due to the fear of contagion. 42 00:02:53,100 --> 00:02:58,066 EMILY PARSONS: As a family, my husband was laid off. His position was in a factory. And 43 00:02:59,200 --> 00:03:01,333 so we have had that financial hit. 44 00:03:01,333 --> 00:03:06,200 So, me and my husband have been tag-teaming. I typically take a day shift. He typically 45 00:03:08,166 --> 00:03:11,266 takes night shift. My son does require 24-hour care. He cannot be left alone because of the 46 00:03:12,700 --> 00:03:14,733 respiratory and breathing issues. 47 00:03:14,733 --> 00:03:19,333 Due to the fact that COVID is primarily a respiratory disorder, it's made our movements 48 00:03:21,566 --> 00:03:23,666 very restricted. 49 00:03:23,666 --> 00:03:27,466 ANNE ADKINSON: With military and veteran caregivers, there's 5.5 million of us in our country, 50 00:03:27,466 --> 00:03:32,466 and we provide $14 billion a year in free care for veterans. 51 00:03:35,133 --> 00:03:40,133 Little things, a note, reaching out, even just saying, hey, I'm at Target, can I pick 52 00:03:42,133 --> 00:03:45,733 something up for you, saves me so much time. And it just helps me feel supported. 53 00:03:47,766 --> 00:03:51,500 AMNA NAWAZ: And for a deeper look at the toll that this pandemic has taken on our nation's 54 00:03:53,500 --> 00:03:56,900 caregivers, Judy Woodruff spoke recently with Dr. Jennifer Olsen. She's executive director 55 00:03:56,900 --> 00:03:59,766 of the Rosalynn Carter Institute for Caregiving. 56 00:03:59,766 --> 00:04:03,833 JUDY WOODRUFF: Jennifer Olsen, welcome to the "NewsHour." 57 00:04:03,833 --> 00:04:08,833 These stories from caregivers, people who take care of others, they're -- it's just 58 00:04:09,966 --> 00:04:12,000 overwhelming. It takes your breath away. 59 00:04:12,000 --> 00:04:15,933 And they're normally the kinds of stories we don't hear. I mean, these happen in the 60 00:04:15,933 --> 00:04:18,366 privacy of families. 61 00:04:18,366 --> 00:04:20,433 DR. JENNIFER OLSEN, Executive Director, Rosalynn Carter Institute for Caregiving: You're right. 62 00:04:20,433 --> 00:04:23,633 The stories we just heard are often bedroom or kitchen table conversations, despite the 63 00:04:25,133 --> 00:04:28,533 fact that there are over 50 million caregivers in this country. 64 00:04:28,533 --> 00:04:30,566 And that was the number before COVID-19. 65 00:04:30,566 --> 00:04:35,300 JUDY WOODRUFF: Give us a sense of the range of things caregivers are called on to do and 66 00:04:36,500 --> 00:04:39,533 what it can mean when the day knows no end. 67 00:04:39,533 --> 00:04:44,533 DR. JENNIFER OLSEN: Yes, I think what we have heard is increases in stress in this time 68 00:04:46,466 --> 00:04:49,533 of COVID, with a couple of main drivers, fears about someone getting sick themselves, so 69 00:04:51,533 --> 00:04:56,400 they want to be able to provide the care that do for others. 70 00:04:56,400 --> 00:05:01,166 Individuals worried about their care recipient getting sick. Lack of access to services, 71 00:05:01,166 --> 00:05:06,166 as we just heard, people unable to come into the home or day programs not being available. 72 00:05:08,066 --> 00:05:11,633 Last week, we released a report, "Caregivers in Crisis," which is a hard read, but not 73 00:05:13,666 --> 00:05:18,500 surprising. Over 80 percent of the caregivers we talked to mention this increased stress, 74 00:05:20,466 --> 00:05:24,866 as well as fears about a lack of ability to go for medical treatments or appointments 75 00:05:26,833 --> 00:05:30,000 that they were expecting to bring their loved one to. So, the stress is compounding. 76 00:05:30,000 --> 00:05:34,833 JUDY WOODRUFF: And the work that these caregivers do, it's not as if they can be socially distanced. 77 00:05:34,833 --> 00:05:39,833 I mean, they are doing some of the most personal kinds of help that you can imagine. 78 00:05:40,933 --> 00:05:42,933 DR. JENNIFER OLSEN: That's right. 79 00:05:42,933 --> 00:05:46,700 I think many caregivers had created structures that gave them respite or breaks. Even the 80 00:05:48,666 --> 00:05:53,500 drive to the grocery store provided a moment of break for returning to their caregiver 81 00:05:53,500 --> 00:05:56,866 role. Those breaks aren't as available. 82 00:05:56,866 --> 00:06:01,866 The services that people relied on for certain people who came into your home not as available, 83 00:06:03,866 --> 00:06:07,100 just an ongoing list of reasons that things are becoming more challenging. 84 00:06:07,100 --> 00:06:11,933 JUDY WOODRUFF: You, the Rosalynn Carter Institute, have called this an emergency room moment 85 00:06:11,933 --> 00:06:13,166 for caregiving. 86 00:06:13,166 --> 00:06:14,433 What did you mean by that? 87 00:06:14,433 --> 00:06:16,700 DR. JENNIFER OLSEN: I'm a public health person. 88 00:06:16,700 --> 00:06:21,666 And in public health, we constantly try to keep people out of the emergency room, whether 89 00:06:21,666 --> 00:06:26,666 through prevention or education and awareness campaigns, or mild treatment options. 90 00:06:29,033 --> 00:06:34,033 Unfortunately, caregivers tend to reach out for help or get support when they're at their 91 00:06:35,966 --> 00:06:39,533 stress point, when they are experiencing physical or mental health ailments themselves. 92 00:06:41,433 --> 00:06:45,433 I think this is the point for the country to see that caregivers, if supported, won't 93 00:06:47,300 --> 00:06:51,400 get to those stress points, won't show up in that emergency room of their caregiver 94 00:06:51,400 --> 00:06:52,633 journey. 95 00:06:52,633 --> 00:06:54,733 JUDY WOODRUFF: What can be done about it? 96 00:06:54,733 --> 00:06:58,400 I mean, these are -- it's not as simple as the government passing one law. I mean, these 97 00:07:00,533 --> 00:07:03,500 are people -- again, it's in the family. It's children. It's the elderly. It's so many different 98 00:07:06,366 --> 00:07:09,800 kinds of circumstances. What are the kinds of things that would help them? 99 00:07:09,800 --> 00:07:14,500 DR. JENNIFER OLSEN: Our work for caregivers will require an engagement on thinking at 100 00:07:14,500 --> 00:07:19,500 the population level about policies and programs, as well as listening to and learning from 101 00:07:20,633 --> 00:07:22,700 individual caregivers' stories. 102 00:07:22,700 --> 00:07:27,266 But you're right, Judy. This is going to take an effort amongst different sectors, employers 103 00:07:27,266 --> 00:07:32,266 engaging directly, legislators and lawmakers, health departments, social service departments 104 00:07:33,700 --> 00:07:37,666 and community organizations, working to see caregivers. 105 00:07:37,666 --> 00:07:42,666 How often are caregivers thought of? Not nearly enough. We don't engage in caregiver conversations 106 00:07:44,600 --> 00:07:48,100 at many boardrooms and companies across this country, nor in the hallways of governments 107 00:07:48,100 --> 00:07:52,966 at the federal and state level. And that's the change that we're calling for. 108 00:07:52,966 --> 00:07:57,466 Across this country, there have been caregivers who have immune compromised loved ones that 109 00:07:57,466 --> 00:08:01,600 they have figured out innovative solutions for, whether that's drive-through services 110 00:08:01,600 --> 00:08:03,733 or drop-offs. 111 00:08:03,733 --> 00:08:07,266 So, wouldn't it be amazing if we started to look to caregivers as the problem-solvers 112 00:08:07,266 --> 00:08:09,666 that they are and to learn from them? 113 00:08:09,666 --> 00:08:13,766 JUDY WOODRUFF: Well, there's no question they are doing extraordinary work, as you say, 114 00:08:13,766 --> 00:08:16,933 for millions and millions of Americans. 115 00:08:16,933 --> 00:08:21,400 Jennifer Olsen with the Rosalynn Carter Caregiving Institute, thank you so much for joining us. 116 00:08:21,400 --> 00:08:22,066 DR. JENNIFER OLSEN: Thank you, Judy.