Mark: This is NARIC’s Spotlight Podcast! Hello, I am Mark Odum, NARIC’s Director. I would like to welcome you to our podcast and today’s topic is caregivers. I am joined by Catherine Graves, NARIC’s Media Specialist. Catherine is one of NARIC’s seasoned veterans, known for going out of the way to help patrons solve their information dilemmas – even coming back a couple of days later and adding something that she thought might help out. I think you will find our conversation engaging and informative. Catherine, please tell our listeners a little bit about who you are and what you do at NARIC.
Catherine: Thank you, Mark, for the introduction. As I Mark said, my name is Catherine Graves and I have been an information and media specialist for NARIC since 2005 and previously I worked with individuals with traumatic brain injury (TBI) in a residential setting. I have been a certified information and referral specialist through the Alliance for Information and Referral Systems (AIRS) since September 2015 and I have a Bachelor of Science degree in social sciences from the University of Maryland Global Campus. Combined I have over 25 years of experience working with individuals with disabilities and within the disability, rehabilitation, and information services field.
Mark: That’s a lot of experience, Catherine! I know that caregiving is a topic that is very dear to you, and you have written some very excellent blog posts. How do you define caregiving?
Catherine: Thank you for that, Mark. Caregiving is, basically, a person attending to the needs of a person with a short or long-term disability due to illness or disability. As former First Lady, Rosalyn Carter, has stated there are four kinds of people in this world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers. And caregiving is universal.
Mark: Wow! That’s a great definition. That’s a great quote, Catherine! Wow. That is… a trending topic, isn’t it? So, as we both know, there are several types of caregivers. What are the different kinds of caregivers that you see?
Catherine: Well, I broke it down to what could be considered formal caregivers, which are the people that you would probably expect, which are the registered nurses, the licensed skilled nurses, home health aides, nursing assistants… The kind of people that you think of, like, in a skilled nursing setting, or that you can have in your own home, depending on the circumstances. So, there’s paid – the formal – and then there’s informal, which is anyone who volunteers from the community, you have friends that can step in – friends and neighbors -, people in your congregation stepping in, and then you have, last but not least, the most important family caregivers – which is a spouse or a blood relation (doesn’t have to be a blood relation). But, spouse, mother, daughter, sister, brother type of situation, where they are helping in a full time or part time capacity for their loved one.
Mark: I would imagine family caregivers are probably the biggest category. It encompasses quite a bit beyond the… It is so important. So many families provide such a service. Tell us a little bit more about the family caregivers.
Catherine: According to the American Association of Retired Persons (AARP) and the National Alliance for Caregiving (NAC), there are over 53 million Americans, nearly 1 in 5, who are providing unpaid care to an adult with heath or functional needs. And, statistically, family caregivers are more likely to be women compared to men. Although it could go either way (laughs). It does lean more towards women and either these caregivers are working full time or part time outside of the home – in addition to being a caregiver to their loved one.
Mark: That is quite a definition for family caregivers! Obviously, they are a big part of this support network. And so, given that – Catherine, I know that you have had some personal experience as a family caregiver. Do you want to share a little bit about your experiences?
Catherine: My father was my mother’s caregiver until the time of her passing in May of 2022. He was already retired from his second profession. You know, I am sure that is not how he planned to spend his retirement. Either one of them really (laughs). They would have liked to have gone and done other things. So, I had the personal experience of watching my father be my mother’s caregiver and then helping where I could on occasion – particularly in cases where, if we had to go into a health setting or medical setting or my father was not available to answer questions, I could help and answer questions and navigate that, you know. Sometimes I would remember things that he might have forgotten. And then I have another friend, a personal friend, and they are caring for a loved one with Alzheimer’s. And they are basically unable to work because taking care of their parent is a full-time job and that parent is in the home. My understanding is that they have some kind of hospice care through Medicare/Medicaid. I’ll talk a little bit more about that kind of situation and what options are available for family caregivers to give themselves a little bit of a break.
Mark: There certainly are a lot of challenges involved. Talk a little bit about some of the challenges and some of the supports that you have found out there to help out.
Catherine: As you said Mark, there certainly are a lot of challenges. Off the top of my head, I would say isolation from other people, you’re constantly taking care of that person’s needs and the only time that you would leave your house to do anything would be either to go to work or to the store and take care of all the things that need to be taken care of for the household. Of course, the next big one is burn out and fatigue. You just don’t have time to take care of yourself. Your physical needs are maybe not being met, you’re not getting enough sleep, you’re not eating maybe the way that you should be doing, you know – you’re not taking care of your own health issues, you know. You’re putting off your own health needs in order to care for your loved one. And, of course, there’s an emotional toll, you know. It is emotionally taxing to do the same thing day after day after day after day after day after day without a break. So, there is that!
Mark: We are always looking for supports or…
Catherine: Other challenges can be: There are no professional resources, like, if you’re in a rural area. And, of course, there’s financial strain, which I kind of mentioned before. It’s, like, if you can’t work outside of the home anymore or it’s very limiting. But, yeah, a big challenge can be if there’s a lack of supports: You just don’t have someone to help out or the resources around you.
Mark: And NARIC has a lot of support. I am sure you have…
Catherine: Yes!
Mark: …a whole toolbox of different supports.
Catherine: Here at NARIC, we are always happy to help. We are certainly very empathetic that everyone is going through something, whether it’s known or not. I mean, you never really know what someone is going through on a day, every day – when you’re on the phone or out in public or wherever you are… You don’t know.
Mark: We got thrown a curve… We, all of us, got thrown a curve in the last couple of years with the COVID pandemic and how that, I guess, has opened up a whole another segment of the family caregivers and caregiving. How has COVID presented challenges and how are you finding help and support with that?
Catherine: As you said, Mark – everybody… the pandemic presented challenges for everyone, but especially those with existing chronic conditions and, of course, those who are caring for a person or persons that need that extra resistance, you know, full or part time. So, it has also exasperated, exacerbated, the stressors of family caregivers and being a caregiver. Because suddenly everyone was thrown into this situation where we no longer knew what was going on. Information was coming and going and, then suddenly, there no longer were supports. Like, maybe the supports that were already in place, such as respite, you know or having other people like skilled nursing coming into the home to help. Things like that, you know. All these services were either just stopped or they were reduced greatly. In the case of my father, the big thing for him was is that he is at high risk due to his age and his own chronic conditions and there was little known early on. So, every time that he had to go to the grocery store or pick up medications and deal with the general public to take care of the household needs, there was a worry. “Ok. Am I going to get sick and am I going to bring it back to my spouse who already has all these things going on and the last thing they need is that.” So, especially vulnerable people, but it really isolated people. You’re isolated enough as a caregiver, but then take away what little maybe…. Every bit of social interaction that you had… You know, that’s very, very difficult for people to deal with. And then, of course, it causes financial strain. Some people who had been working full or part time decided it wasn’t something that they could continue to do and still take care for their care person.
Mark: Well, you mention research and articles…
Catherine: Yes! Yes, yes.
Mark: I know that NARIC started collecting a lot of information from NIDILRR, our funding agency.
Catherine: A search of our REHABDATA database, there are over 800 articles in our collection, just on this topic alone. And in terms of people who are, you know, caregiving, there are a couple of articles that I saw in there – at least 119 in REHABDATA alone, you know. I, you know. There were the ones that I found were most interesting, you know. Everything is a mess and I am just trying to survive it: The impact of COVID-19 on personal assistance services, which is a little different and that is something, Mark, that you can probably speak about. There’s also Family caregivers navigating the health care system: Evolving roles during the COVID pandemic. So there’s a lot of interesting research out there and I am finding that, as we continue on, we’re going to see more and more things about Long COVID in our collection. We’re going to be seeing more of that. There are 15 NIDILRR-funded projects that have, um, are related to COVID-19 and the pandemic in general. Most of them focusing on employment, but I’m sure that this will continue to grow as things change.
Mark: I know the government is funding more and more research and adding to the collection. One of the things that you mentioned earlier and I want to hear a little bit more about is burn out. You know there is ways to alleviate burn out, but tells more about how people are approaching burn out and haven’t tried to prevent burn out.
Catherine: Definitely, Mark. Thank you for bringing us back to that. Community and supports can help alleviate with burnout and caregiving can be very rewarding, but it is also very physical and emotionally draining. And my big to think to take away is “Don’t be afraid to ask for help”. If you were out in the ocean and you were drowning, you would not just go “Ugh. Ok. I am going to drown”. You probably are flailing your arms, trying to get the lifeguard or somebody to notice you or somebody throw you out a little life raft preserver thing. You would ask for help. We’re kind of conditioned that is, like, “Just do it. Who else is going to do it? I have to keep on plugging through”. And that just means, like, looking online and contemplating contacting places like us, like NARIC, for resources and, um, that we can help with. There are certainly plenty of organizations, which I am sure we’ll touch on next, that you can find that provide information on things like respite care and, you know, like support or support groups, because nobody understands what you are going through like somebody or someone who is going through the exact same thing. So, you don’t have to go it alone. You don’t have to be alone, so just ask! Look for the resources. Go to these organizations. They have lots of factsheets, lots of info… infographics, people who are more than happy to help and talk to you.
Mark: I am asking for help. What are the supports out there? The top 2 or three supports that you can think of that have a lot of, um, help now that I have asked for it.
Catherine: Uh, definitely! The big one is the Family Caregiver Alliance, which I think we probably will have links to this stuff… later? Yes. I am getting the nod. So, there’s the Family Caregiver Alliance, there’s the National Alliance for Caregiving. There is the Caregiver Action Network, which tends to be a little more policy, still has good resources. And, care.com. I know it is more of a commercial site, in some regards, but it still has a lot of good resources on the topics – even if you are not utilizing the service to go find someone to come into your home. And then, of course, support groups on or offline, whether you pick up a notice in a hospital bulletin board and you pick up a note and…. Say “Hey, this is for me”. Obviously with the pandemic, that kind of changed things. Nobody was meeting in person, so everybody is doing things on Zoom or Facetime or whatever. And everyone is talking. And, yeah, Facebook groups – I am sure there are other groups in other platforms, but that’s the one that I am most familiar with.
Mark: You’ve gone through quite a bit. Thank you so much for spending some time and, um. Certainly, with the empathy that you have, I know people will be coming to NARIC and asking for you. No doubt. I want to make sure that we continue serving folks. You know it is trending upwards as a topic and I don’t know… I don’t see it going away any time soon.
Catherine: Yeah, as long as there’s people alive, people are going to either need a caregiver or be a caregiver. Or at some point have had people caring for them.
Mark: Anything else that you’d like to say before we get out of here?
Catherine: Just be kind to each other. You don’t really know what anybody’s going through. And, maybe that person who’s having a short temper-ed day at the grocery store. It may just have been the last straw. But otherwise, please come to visit us online at naric.com. We’ll be more than happy to help you!
Mark: In other words, ask for help. So...
Catherine: Yes! Ask for help!
Mark: This is Mark Odum. Thanks for listening to today’s podcast on caregiving. If you’d like to learn more about caregiving, or are looking for caregiver support, please contact us by calling our toll-free number 800/346-2742, emailing us at naricinfo@heitechservices.com, or by using our free chat service on our website, naric.com. By the way, all the resources that we mentioned in today’s discussion, along with transcripts of this episode, are available on our website. Once again, thank you for listening to NARIC’s Spotlight Podcast.