AYESHA RASCOE, HOST:
You might think you know who makes up the largest group of caregivers in this country. Nurses? Nursing home aides? No, if we're talking about older adults, it's unpaid caregivers, and it's often women. The government estimates that there are about 53 million such caregivers, and even though it can be a full-time and physically and emotionally difficult - it's typically not recognized as a job.
We are joined by two people who do this work. Dawn Shedrick is a social worker who is a caregiver to her mother. Also with us is reporter Kat McGowan. Let me start with you, Kat. You're a science and health reporter, but a few years ago, you began to focus on caregivers. What made you want to look at caregiving?
KAT MCGOWAN: Yeah, thank you. I've been a journalist for decades, and then caregiving happened to me, first with my sister-in-law and then my two parents. And I realized, looking around, there was very little conversation about adult caregiving. People are living longer with more chronic diseases, and more and more care is coming out of the hospital and into the home. So caregivers are asked to do things that, a generation ago, only nurses would've done, all unpaid, mostly untrained. I think it's, like, our largest unpaid health care workforce.
RASCOE: Well, Dawn, can you share your experience caring for your mother?
DAWN SHEDRICK: Sure. My mom has a progressive form of multiple sclerosis. By the time I was finishing college in 1996, that was around the time that she started to require the use of a cane. And it has been quite the journey as her MS has advanced to the point where now she hasn't walked unassisted since 2004. She pretty much needs assistance with all of her activities of daily living at this point.
RASCOE: How do you juggle making a living and caregiving with your mom who need so much support?
SHEDRICK: Yeah, juggling is the right word because that's often what it feels like. I'm grateful that I do get to work for myself. And so even though I have control over my schedule and the work that I do and the work that I take on as a consultant and trainer, what a lot of people who have not been a caregiver don't realize is that it literally is a job. There are very specific requirements, you know, in terms of providing physical support. There are many caregivers who are also providing administrative - you know, taking responsibility for managing medical appointments or interacting with health care providers.
MCGOWAN: Yeah, you would not believe how many people I hear - like, what really is so draining for people often is the paperwork - you know, dealing with insurance companies, dealing with medical systems, like, trying to get benefits organized. You know, and that's not rewarding, whereas if you're helping your mom have breakfast, that is rewarding.
RASCOE: Well, Kat, can you talk about that toll, that emotional toll? Even with families when they take it on, a group of siblings may not know what they're signing up for when they're, you know, trying to care for their aging parent.
MCGOWAN: I'm a caregiving reporter, so I'm talking to caregivers all the time. And so many of them say, you know, it's not that they don't want to do it. They want to do the job. They just want to do it with training and help and support. There's no system. There's no one place to turn or, like, obvious place to learn how to do what you're doing. And a lot of times, you know, family dynamics are really difficult.
And, you know, again, a lot of the people I speak to, their family's not there for them. They're taking it on pretty much on their own, and they find themselves doing all the work and solving all the problems by themselves. And that's part of the reason why the loneliness becomes so intense. We just need to be talking about this more so that it's recognized, so that it's validated, and there's an understanding of how many people are doing this and how hard it can be and also very rewarding and filled with love at the same time.
RASCOE: Dawn, when did you know that you needed more help?
SHEDRICK: Oh. It was at least 10 years into the journey for me because that was around the time that I started to feel the emotional impact that it was having on me and also the physical and social, you know, the way that it was just impacting my life. I just came to, you know, the realization, like, wow, like, I need some help here.
And so at that time, I was grateful to have found a therapist who specialized in working with caregivers because she herself at that time was a former caregiver. She had cared for her mother who had Alzheimer's. But it took me 10 years to get there because I just was coming home to help my mom. I didn't even identify as a caregiver. I wasn't conscious to, like, a caregiver identity until I realized that I needed some support if I was going to be able to continue to do this.
RASCOE: What are some of those resources that people can turn to that could help provide support for caregivers?
MCGOWAN: Yeah, I mean, like I said, there's no system, which is difficult. There's no one place to look. You have to research it out yourself. A lot of people find a lot of help in support groups not just for emotional support, but just practical support because, you know, I myself belong to a couple support groups for helping people with dementia. And any problem that you're dealing with, somebody's dealt with it before. So that, like, just person to person is really valuable. And the VA actually does caregiver support, but it's hard. You kind of have to research it and patch it together depending on your circumstances and who the person is you're helping and where you are in life.
RASCOE: This is a question to you both. What do you wish the rest of us who are not caregivers knew about what it's like to be a caregiver?
SHEDRICK: Yeah, folks really need to understand that when we consider our cultural and social, you know, moment that we are in - that if you have not been a caregiver or if you're not currently a caregiver, you will most likely be a caregiver at some point in the future if you also might - may not require care. So just let the caregivers in your life know that you see them. Authentically offer support and help in the ways that you know that you can so that we can keep this conversation going, and more caregivers, you know, feel comfortable expressing themselves and their experiences.
MCGOWAN: Yeah, I mean, I totally agree with what Dawn said. I think sometimes people are afraid of the topic, especially when it comes to elders. But if we talked about caregiving as much as we talk about parenting, for example, you know, where it was just like, oh, yeah, this is happening. I've got a toddler, you know? If that was as normal to say, oh, yeah, my mom's got dementia, you know, I think it would be a lot easier even if nothing else changed.
RASCOE: Kat McGowan reports on caregiving and is a Rosalynn Carter Mental Health Journalism fellow. Dawn Shedrick is a social worker and caregiver for her mother. You can check out our series on caregiving by going to npr.org/caregiving. Thank you both so much.
SHEDRICK: Thank you.
MCGOWAN: Thank you. Transcript provided by NPR, Copyright NPR.
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