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For caregivers, a difficult job becomes nearly impossible during the pandemic

There are more than 50 million caregivers in the United States, from in-home providers to family volunteers. For these essential workers, the pandemic has represented a crisis on a different scale. We hear some of their stories about what the past few months have been like, and Dr. Jennifer Olsen, executive director of The Rosalynn Carter Institute for Caregiving, joins Judy Woodruff to discuss.

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  • Amna Nawaz:

    We heard earlier from some front-line health care workers, but let's turn now to a different kind of essential worker, a few of the more than 50 million caregivers in this country who provide help to loved ones or to clients.

    We spoke with some who volunteer, who work in-home, and some family caregivers to hear what their past few months have been like

    Matt Berzok. My son Ben is a 16-year-old with autism.

    When the pandemic started, Ben went from being fairly structured and programmed to all of a sudden having no structure. It was pretty anxiety-provoking, especially for Ben, who over time got more and more anxious.

  • Cecily Baker:

    My name is Cecily Baker. I am the owner of a business called Be Patient Caregiving.

    Being a caregiver in this pandemic is all about trust. The families are worried. We're listening to the media about people dying left and right in nursing homes, assisted living, and in home. That can affect your mental health.

  • Maria Ortiz:

    My name is Maria Ortiz. I am a volunteer member for the Greater Cincinnati chapter for the Alzheimer's Association.

    My father passed away from Alzheimer's in 2014. It's a way not only to honor his memory, but also to be a voice out there, to say to others, you're not alone. There's help.

  • Emily Parsons:

    My name is Emily. My son James was diagnosed with a terminal genetic condition six years ago.

    We do get 24-hour skilled nursing care. However, with the pandemic, we haven't always had skilled nurses that were cleared to come into the home. You don't have any escape. You're constantly in that caregiver role. There is no break. There's no rest.

  • Anne Adkinson:

    My name is Anne Adkinson. I live in Oregon. And I am the caregiver for my husband, who is a disabled veteran.

    He served in Iraq in 2003. I feel like we kind of got into a groove with the caregiving routine over the last couple of years. But the pandemic has definitely put a wrench in all of that, with having the kids home.

  • Matt Berzok:

    At one point, he was so angry, that he ended up biting me. And I walked around with a bruise on my shoulder for the better part of a month.

    Even though I might not have chosen this, he's made me so much of a better person, brought me joys that I never thought I could have, and sadness that I didn't expect either, but has also taught me a lot about life.

  • Cecily Baker:

    So, they want to know, what are we putting in a place to make sure that their loved one is safe?

    We are getting our caregivers tested. And we have asked the families if they would like to join.

  • Maria Ortiz:

    Caretakers feel that they are not doing the proper care sometimes or they're not going beyond what they should be doing. And that burden is very heavy.

    And now, with the situation of COVID-19, having people coming and support the caretaker has been a little bit more limited, due to the fear of contagion.

  • Emily Parsons:

    As a family, my husband was laid off. His position was in a factory. And so we have had that financial hit.

    So, me and my husband have been tag-teaming. I typically take a day shift. He typically takes night shift. My son does require 24-hour care. He cannot be left alone because of the respiratory and breathing issues.

    Due to the fact that COVID is primarily a respiratory disorder, it's made our movements very restricted.

  • Anne Adkinson:

    With military and veteran caregivers, there's 5.5 million of us in our country, and we provide $14 billion a year in free care for veterans.

    Little things, a note, reaching out, even just saying, hey, I'm at Target, can I pick something up for you, saves me so much time. And it just helps me feel supported.

  • Amna Nawaz:

    And for a deeper look at the toll that this pandemic has taken on our nation's caregivers, Judy Woodruff spoke recently with Dr. Jennifer Olsen. She's executive director of the Rosalynn Carter Institute for Caregiving.

  • Judy Woodruff:

    Jennifer Olsen, welcome to the "NewsHour."

    These stories from caregivers, people who take care of others, they're — it's just overwhelming. It takes your breath away.

    And they're normally the kinds of stories we don't hear. I mean, these happen in the privacy of families.

  • Jennifer Olsen:

    You're right. The stories we just heard are often bedroom or kitchen table conversations, despite the fact that there are over 50 million caregivers in this country.

    And that was the number before COVID-19.

  • Judy Woodruff:

    Give us a sense of the range of things caregivers are called on to do and what it can mean when the day knows no end.

  • Jennifer Olsen:

    Yes, I think what we have heard is increases in stress in this time of COVID, with a couple of main drivers, fears about someone getting sick themselves, so they want to be able to provide the care that do for others.

    Individuals worried about their care recipient getting sick. Lack of access to services, as we just heard, people unable to come into the home or day programs not being available.

    Last week, we released a report, "Caregivers in Crisis," which is a hard read, but not surprising. Over 80 percent of the caregivers we talked to mention this increased stress, as well as fears about a lack of ability to go for medical treatments or appointments that they were expecting to bring their loved one to. So, the stress is compounding.

  • Judy Woodruff:

    And the work that these caregivers do, it's not as if they can be socially distanced. I mean, they are doing some of the most personal kinds of help that you can imagine.

  • Jennifer Olsen:

    That's right.

    I think many caregivers had created structures that gave them respite or breaks. Even the drive to the grocery store provided a moment of break for returning to their caregiver role. Those breaks aren't as available.

    The services that people relied on for certain people who came into your home not as available, just an ongoing list of reasons that things are becoming more challenging.

  • Judy Woodruff:

    You, the Rosalynn Carter Institute, have called this an emergency room moment for caregiving.

    What did you mean by that?

  • Jennifer Olsen:

    I'm a public health person.

    And in public health, we constantly try to keep people out of the emergency room, whether through prevention or education and awareness campaigns, or mild treatment options.

    Unfortunately, caregivers tend to reach out for help or get support when they're at their stress point, when they are experiencing physical or mental health ailments themselves.

    I think this is the point for the country to see that caregivers, if supported, won't get to those stress points, won't show up in that emergency room of their caregiver journey.

  • Judy Woodruff:

    What can be done about it?

    I mean, these are — it's not as simple as the government passing one law. I mean, these are people — again, it's in the family. It's children. It's the elderly. It's so many different kinds of circumstances. What are the kinds of things that would help them?

  • Jennifer Olsen:

    Our work for caregivers will require an engagement on thinking at the population level about policies and programs, as well as listening to and learning from individual caregivers' stories.

    But you're right, Judy. This is going to take an effort amongst different sectors, employers engaging directly, legislators and lawmakers, health departments, social service departments and community organizations, working to see caregivers.

    How often are caregivers thought of? Not nearly enough. We don't engage in caregiver conversations at many boardrooms and companies across this country, nor in the hallways of governments at the federal and state level. And that's the change that we're calling for.

    Across this country, there have been caregivers who have immune compromised loved ones that they have figured out innovative solutions for, whether that's drive-through services or drop-offs.

    So, wouldn't it be amazing if we started to look to caregivers as the problem-solvers that they are and to learn from them?

  • Judy Woodruff:

    Well, there's no question they are doing extraordinary work, as you say, for millions and millions of Americans.

    Jennifer Olsen with the Rosalynn Carter Caregiving Institute, thank you so much for joining us.

  • Jennifer Olsen:

    Thank you, Judy.

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