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The number of Americans providing unpaid care for loved ones has been rising in recent years. The coronavirus pandemic and the associated shutdowns have made these difficult roles that much harder, increasing isolation and limiting resources. We hear stories from some of these caregivers, and Judy Woodruff talks to C. Grace Whiting, president and CEO of the National Alliance for Caregiving.
The number of Americans who provide unpaid caregiving for their loved ones has been rising, to now more than 50 million caregivers.
The pandemic and the shutdowns have made their work that much harder, further isolating people in too many cases.
We're going to begin with the voices of some of those who contacted us. There were hundreds who reached out.
Here is some of what they told us.
And a warning — this segment contains sensitive subject material, particularly for younger viewers.
My name is Deanna Ludwig, and I live in Port Washington, Wisconsin. And I'm 50 years old.
My name is Stephanie Campbell, and I live in Ellenwood, Georgia.
My name is Lydia Giordano. I'm 61 years old, and my son is 20 years old. And I live in Stamford, Connecticut.
My name is Hector Alvarado. I'm 37, and I live in San Jose, California.
My name is Karen Roed-Rick. I am 66 years old, and I live in Farmington, Minnesota, a suburb of the Twin Cities.
My name is Shawn Moore. I live in Kansas City, Missouri, and I just turned the big 5-0 a few months ago.
I provide care for my 94-year-old father. This is a man who has lived through a couple of strokes and many heart attacks.
But the COVID situation really throws him off. He absolutely does not want to die alone in the hospital. And so he restricts himself completely from seeing anyone else and having any other interaction, other than with me.
So, I live here with my grandma. I have taken care of her since I was a little kid. But about three years ago, she went into a dementia-related psychosis.
And ever since then, she's required, like, round-the-clock care. I haven't had a break since the middle of March.
My caregiving began five years ago, actually, to my grandfather, who is 89. He has dementia, and he has had it now for going on eight years.
Well, my husband is — he had a massive bilateral stroke about 25 years ago. He does feed himself, but, other than that, he requires everything.
So, I am a caregiver to my spouse, who is a 23-year Army veteran who completed seven combat tours to Afghanistan. And for the most part, with our caregiving, my husband has chronic PTSD and suicidality, as well as anxiety, major depression.
He has adrenoleukodystrophy, and that happened at the age of 7. Stevie stopped walking, talking and went blind in three months.
He had to get trached at 7 because he almost died, and he's had a trach since he's 7. And now he's 20. So, constantly with this disease, you have to suction in order for them to breathe, to clear the airways.
With the pandemic, it was really getting extremely difficult before. And then, any help that I was getting, whether it was someone coming in, that stopped.
Me having to remind him every day that there is a pandemic going on, it's repetitive to me, but not so much him. Because, again, he has dementia. So, I have to make sure I tell him, 'Granddad, we're not going anywhere today.'
So, for a minute, he will take it, and he will try to understand the concept of, 'We're staying at home, just like everybody else.' But within the next hour, he's saying, 'Are we going somewhere today?'
When they first started talking about the virus, I knew that I was going to, like, guard him like Fort Knox. Nowhere — I said, 'He can't go to respite unless I'm laying here dead.' Do you know what I mean? Like, 'He will not go to a facility. I will do this. Whatever.'
So, that's kind of changed over time. If they had an opening in a respite facility where there's some sort of, like, 'We don't have any cases, but there's a chance,' I'd be like, 'Let's go.'
His mental health has been declining. He's been in a depressive episode here the last several weeks, and he had a trigger Sunday morning. And he left the house, and he found himself purchasing a gun.
So, I called the police. And we went into a situation of trying to find him, trying to track him down. But — oh, I'm going to get — so, I have told this — I told his therapist today and didn't cry. But I'm going to cry with you.
So, I must be getting to the stage of reality — right? — of what really could have happened.
This is one of the hardest jobs I have ever had in my entire life. The emotional toll it's taken on me has been indescribable at times.
And not getting enough sleep is also my other issue, which is very hard, because, as soon as the sun goes down, it's dark. I try to keep the house as bright as possible. But my thoughts in my head is about the coronavirus and my son… if it's going to be the one that takes him away from me.
That's my biggest fear.
And we thank each one of you for sharing your story with us.
Let's talk more now about the challenges and what people need to know.
Grace Whiting is the president and CEO of the National Alliance for Caregiving, which just issued a report on the state of caregiving, along with AARP.
Grace Whiting, thank you very much.
These stories take your breath away. It's — what these people are going through, I think most Americans don't realize.
I agree, Judy.
And I — thank you for showcasing those stories.
I think, to us, what is most surprising is that the pandemic has really removed the veneer, and now we can see what caregivers are going through. But so many millions of Americans — 53 million Americans — have been going through this on a day-to-day basis.
And now we're thinking about it, but there's still so much more that needs to be done.
Talk about the toll this is taking, especially now, during the pandemic, when these folks are isolated, and they are not getting any of the outside help that they might have been getting before.
Caregivers are facing, even before the pandemic, when this study was conducted, mental health challenges, physical health challenges and financial health challenges.
So, we know one out of five feel isolated. And we know, not from the data, but from our community, that that is something that has gotten worse since the pandemic. Many don't have access to respite care, even before the pandemic, even though 40 percent of folks said that they would find it helpful to have access to respite care.
And we see caregivers reporting that they don't take care of themselves. They don't have enough time for self-care and that financial strain, nearly half saying that they had some kind of financial impact, like giving up savings or taking on debt or selling assets, in order to cover the cost of care.
Now, we don't know for sure from this research, but we suspect that those issues are only magnified by the pressures we're seeing during the pandemic.
And, as we heard, what is it, the young man Hector Alvarado, said he — taking care of his grandmother — he said he hadn't had a break since the middle of March, so over two months.
And, in some cases, they are facing situations that clearly cry out for professional help, for psychiatrists, or someone who has direct experience with this kind of severe condition.
And I think one of the scariest things that families are now facing is, when you look at the legislation that was passed following the pandemic and the congressional action, a lot of that legislation doesn't help caregivers in the type of situation, particularly if you're caring for someone who does not have COVID-19.
You may not have job protection. And your sick days, the paid sick day extension, wouldn't count if you got COVID, and then still needed time off work to care for someone else for any reason or for COVID, if you used all your days.
So, there's a lot of gaps that I think people are feeling. And to not have had a break or to have a place to go to get the support you're talking about, I think, puts new and uncertain strains on several families and threatens their own health and wellness and their ability to have a career.
And from your perspective, what is the most important thing that needs to be done now for these caregivers?
We need to address their mental health, their physical health and their financial health.
So, that means expanding access to respite, making sure caregivers are included in care delivery, whether that's new telehealth that's available for conversations with providers. And the financial piece, making sure that the protections under COVID-19 for paid sick day and paid family leave, that those are extended to caregivers who may no longer have access to dependent care support because of all the shutdowns and the quarantines.
Grace Whiting, president of the National Alliance for Caregiving, thank you so much for helping us tell their story and shine a light on what these caregivers do and why we owe them so much.
Thank you, Judy.
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