Grace Whiting: Caring for Caregivers During COVID-19

Show Notes

In this episode, we recognize National Family Caregivers Month by interviewing C. Grace Whiting, President and CEO of the National Alliance for Caregiving. Grace talks about challenges caregivers are facing during the COVID-19 pandemic.

Follow Grace on Twitter: @cgracetweet

Learn more about the National Alliance for Caregiving: https://www.caregiving.org/

Get the latest information and resources about age-related conditions, diseases and issues that impact the health of older Americans: https://www.agingresearch.org/health-topic/

Episode Transcript

Sue Peschin:

Hi there. I’m Sue Peschin, President and CEO of the Alliance for Aging Research, and you’re listening to our podcast, This is Growing Old. The COVID-19 pandemic has presented an additional set of challenges for already overworked family caregivers. Joining me is Grace Whiting, President and CEO of the National Alliance for Caregiving, who will address these challenges and offer advice for family caregivers during this difficult time.

Sue Peschin:

Grace, thank you so much for joining us today.

Grace Whiting:

Thank you, Sue. It’s an honor to be here.

Sue Peschin:

Thanks. So first, tell us a little bit about how you’ve been doing during the COVID-19 pandemic.

Grace Whiting:

I’ve been hanging in there. I think one of the biggest challenges for COVID-19 is the decision about when to see family or not see family. My family is all in Texas and in Iowa, and so we’ve had big debates about what we’re going to do over the holiday season. But of course, Dr. Fauci and Dr. Francis Collins at NIH and others have said to just be really cautious about travel, because the last thing you want to do is go home for the holidays and bring something home to your families.

Grace Whiting:

I will say it’s a little bit tough not having those moments where you can really touch base with all the people in your life, but we’re handling it as creatively as we can and doing Zoom meetings and brunches, and sending cards and doing weekly calls. So, we’re doing as best as we can, I think.

Sue Peschin:

That’s good. I totally relate to the visiting family, not visiting family. I think that’s going to be an especially big issue as the holidays come up. We know the pandemic’s been tough for everybody, but we’d love to hear from you a little bit about the unique challenges for family caregivers.

Grace Whiting:

One of the things we’ve started doing at National Alliance for Caregiving is trying to really map what the challenges are facing family caregivers, and essentially the disruptive impact of COVID-19 on their day-to-day lives. As we’ve done that in our networks and with researchers, with innovators and business folks, as well as with caregivers and advocates, there’s emerged this two-part challenge.

Grace Whiting:

If you’re at home with someone, you’ve got challenges related to family dynamics. You might have kids coming home from college and trying to engage in remote learning, you might be trying to work remotely, or you might be an essential worker so that you’re coming in and out of the home and there’s that risk of contagion, and you may not have access to respite. So here you are trying to do all this care work, and you’re not really able to get a break, you’re not able to get some time to yourself. Which I know so many of us are going through, but it’s that much more intense if you’re caring for someone with a healthcare need or disability.

Grace Whiting:

On the flip, you have those folks that are physically distanced. I think in addition to these questions about when is it safe to see this person or to be present with them, to hold their hand, to be by their side, you also have questions when you’re physically distanced about access to facilities or participation in shared decision-making. So for example, if my dad has a heart attack and goes into the hospital, will I be allowed to go with him and to accompany him? Not just as an interested family member, but also as someone who is really a partner in his care decisions. We’re seeing that many caregivers are being excluded even more than normal.

Grace Whiting:

I think the other piece of that is just telehealth. Not everybody has access to the internet or they don’t have access to very good internet, and that makes things like telehealth really difficult to do.

Sue Peschin:

Yeah, absolutely. One of the things that we’ve been talking about too at the Alliance is that it’s great that telehealth has become better reimbursed and covered, but it also validates even more for folks that they shouldn’t go to the hospital or they shouldn’t go to their doctor’s office. I think now that we are several months into this, there’s more messaging around it is time to go back and make sure that you’re managing your chronic conditions, getting your vaccines, doing what you need to do. We’ve adapted safe practices in those settings for folks to do it. So, sometimes telehealth also gives that impression to folks that you still ought not to be going to see your healthcare providers.

Grace Whiting:

I think that’s such a good point. This sense of preventative care and even something like the annual wellness visit, that it’s safe to go in and do this regular check-in, or if something drastic happens like a heart attack, that you should be going into a hospital to take care of it, but I can also understand how families are nervous about it. I mean, I went to the dentist last weekend and I thought, “Gosh, I’m really living life on the edge.”

Sue Peschin:

I know. It’s nerve-wracking when you actually do go out, there’s no question about it. So, what do you think the COVID-19 pandemic has shown us about how family caregivers are treated in the United States and how can we do a better job of supporting them? You mentioned the hospital setting, but I would also say in long-term care settings and just in the community for the folks who are caring for people at home.

Grace Whiting:

The good thing I would say is COVID-19 has brought family caregiving to the forefront. So people are very aware that, especially when we talk about white collar workers who are able to work remotely, there’s a lot of awareness around the fact that people are more dynamic than just whoever they appear to be when they show up at work. So, people have family responsibilities and that’s a normal part of human life.

Grace Whiting:

So one of the nice things, I think, has been, you hear stories about people who are saying, “As caregivers, in many ways there’s more awareness of what I’m doing day-to-day, and it’s de-stigmatized it.” Because just like you might say, “Oh, I’ve got to answer the door, hang on a second, or I have to take the dog out.” They can say, “I’ve got to go give meds to my mother or I’ve got to go check in on my sister.”

Grace Whiting:

I think that piece of it has been pretty positive, but I also think we’re still struggling to really identify what are the solutions that will help long-term. You could see Congress struggling with that with their COVID relief package.

Sue Peschin:

Mm-hmm (affirmative). Yep, I think those are all really good points, there’s good and challenges in this situation. What are some tips that you might have for family caregivers during this time that might be unique?

Grace Whiting:

One thing is to find where you can moments to celebrate what’s happening in your life and the small things. That’s really hard to do right now, because there is a lot of doom and gloom, but I think being able to sit down and say, “Okay, why am I doing this?” And really looking at both the positive and the negative. I think because people are more aware, opening up some conversations with people around you about what you might need during the pandemic to get by, having conversations with people in your network and your neighborhood.

Grace Whiting:

One of my close friends just started this volunteer activity, for example, where she calls seniors who may be living alone and she just visits with them, because they’re at home, they don’t feel safe going out. You see companies like Nextdoor creating volunteer networks where people can go in and check in on their neighbors. So I think as a caregiver, one important thing to do is to really check in on that and see if there are ways that you can get support from your community and your informal network.

Grace Whiting:

The other I would say is to just make sure you’re taking care of your own health as best as you can during this time. Whether that’s making sure to get out of the house and to go walking or taking advantage of behavioral health services you might have, even if they’re remote. Because I think as people in public health have been saying we’re headed into the winter and this is a time really to get those tools in your arsenal so that when we get there, we can lessen the impact of what might be a very challenging season ahead.

Sue Peschin:

That’s great. That’s really, really helpful, I think, to our listeners. I’m wondering, since we were just talking about going to the hospital, what are tips you have? There’s been, I think, a lot of frustration for the necessary safety precautions that families oftentimes can’t visit their loved ones if they have COVID, if they have something else going on that puts them in the hospital, and then also in long-term care facilities. Now that’s starting to gradually open up, but what tips have you guys been giving to family caregivers about how to get updates on health status, how to connect, all of that?

Grace Whiting:

I think it varies a lot from state to state, so I wouldn’t say that there’s one uniform set of tips. Especially when you talk about, for example, assisted living, that could be facility to facility. One thing I think is really helpful is in conversations with the care providers, making clear that you’re not just a visitor, you’re not just bringing a casserole or a teddy bear, but you’re there because you have valuable insights to offer and how this person is doing.

Grace Whiting:

So really saying, “I know you need to protect people in this facility, I want to accompany this person, because I’ve been helping them track their A1C, or I’ve been helping them to manage meals and I have questions about what kinds of things they should be eating, I have questions about medication management.” Really clarifying that you’re asking because you want to help this person get to their best health possible, not because you’re worried. Although, that would be natural to be worried about. But it’s not just worry, that you’re there as really a partner in the team, just like a therapist would be or a physical therapist, or a nurses aid or someone like that.

Grace Whiting:

I think the other piece of this is really taking advantage of electronic health records of any type of access you might have to those digital tools to help you coordinate care, and to think about other pieces of caregiving. For example, financial management, making sure you’ve got all your records in place and that you’ve had conversations about, well, how are we going to handle this if we end up in the hospital? I think that’s the other piece of this too, is not just those legal documents, but also building out an understanding what the person you’re caring for, that they may need help and how they want that to work, what it’s going to look like.

Sue Peschin:

Great. Great advice. Good. The National Alliance for Caregiving recently released a report, Caregiving in the US 2020. Can you tell us about this report and its key findings and where folks can also find it?

Grace Whiting:

Absolutely. So, Caregiving in the US is a partnership with AARP and it goes back to 1997. So, we’ve done it roughly every five years. We survey a statistically representative group of caregivers across the US, which means we have an opportunity to really extrapolate the findings and get a sense of what caregivers are going through, regardless of their background, their race and ethnicity, their income level, whether they live in rural areas or urban or suburban areas. So, it’s been an amazing project.

Grace Whiting:

In 2020, we were able to actually trend the results against the study that we did in 2015. We found a couple of surprising things. I’ll note that this was actually fielded before COVID, but I think the findings are still relevant when we talk about caregiving in the United States right now. One is that we found there were nine and a half million more people caring for someone. That’s a total number of caregivers at 53 million people.

Grace Whiting:

We also know that of people who were caring for an adult, there was a handful of households, specifically three and a half million households that had minor children in the home who were helping to take care of someone. So, you get that sense of a ripple effect. It’s not just that you might be caring for an aging parent and minor kids in the home, but those kids may also be playing a role in the caregiving journey.

Grace Whiting:

The other thing, I think, was a little bit surprising to us was that people tend to be caring longer than they were when we looked at this in 2015, and they tend to be caring for people with more chronic conditions. So, that aligns with what we talk about in aging all the time. You get healthier people are getting older, but there’s also, I think, that ongoing need to address the impact of multiple chronic conditions.

Grace Whiting:

There’s lots of other fascinating, I think fascinating information in this study. It’s on our website at caregiving.org and AARP, their website. But I think one of the big things that’s interesting about it is that it gives you a snapshot of where we were in early 2020 versus 2015. Places that you thought would have had more progress, that actually had less progress. So people had more trouble with care coordination, they didn’t use technology as much as we thought they would. So, there’s a couple of spots there where you think, okay, that’s low hanging fruit where we could really begin to make a difference.

Sue Peschin:

That’s great that you do this every five years so you can notice these trends and figure out places where there are easier opportunities for there to be some change. So, I’m going to switch gears a little bit and ask a question we ask of all of our guests, which is when you were a kid, what did you imagine growing older would be like?

Grace Whiting:

I feel like I was always that kid that was ready to be an adult. I just remember arguing with my parents, like, “I’m 13, I know what I’m doing.” I had this sign in my locker that I cut out from some teeny bopper magazine that said, when I grow up, I’m going to be president and my husband will be first man. So, I was a very-

Sue Peschin:

That’s great, I love it.

Grace Whiting:

I was a very precocious kid and pretty early on knew I wanted to go to law school and maybe get involved in policy and government. But yeah, I mean, I think I had the advantage of … I guess, by being a nerd, all the people that I looked up to were older people. You think about somebody like Madeline Albright or Ruth Bader Ginsburg, and they were all fully grown women when they really came into their own.

Sue Peschin:

Yep, yep. You’re part of the late bloomers club, which is a good club. So, what do you enjoy most about growing older now?

Grace Whiting:

One of the reasons I love getting older is I really feel like you become more resilient as you age. When I was in my 20s and I was living in Louisiana, I experienced, for example, Hurricane Katrina. It was a very difficult time for everybody. I think as a younger person, you’re sitting there and everything is new, you’re doing all these things new for the first time. But then as you get out and you start to really live your life, you realize that people are more resilient than they initially think they might be.

Grace Whiting:

I think that resilience allows you to look at trauma or tragedy and to say, “You know what? We are going to get through this. We’ve gotten through similar tragedies before, and we’ve relied on people who were good people to help us get there.” That same formula of really reaching out to others and looking for the good, when you can, is very helpful. But it’s something that you don’t initially see when you’re a teenager or you’re in your 20s, and I think getting older really helps you to put some of that in perspective.

Sue Peschin:

Yeah, that’s great. I love it. That’s really good. It’s so true, when you’ve been there, done that, you get a little fiercer each time.

Grace Whiting:

Yeah, and I always think about my predecessor, Gail Hunt, before she retired. It was amazing, because people talk about how boomers and millennials, I guess it’s like a battle, but the reality is, is that actually, I’ve found that it was a good compliment. Because I could bring a lot of energy and excitement, but Gail being at the other end of her career could really say, “You don’t have to worry about this, because this is how it’ll go.” She had this confidence in gravitas from having been there before that brought a lot of peace and comfort as I was navigating these things for the first time. So, I think there really is that intergenerational piece too of learning from each other.

Sue Peschin:

That’s right. Yeah. No, you have to be open to it, but it’s there for sure. So Grace, thank you so much for being on our show today, it’s been wonderful talking to you. Those of us at the Alliance love partnering with you and your colleagues at the National Alliance for Caregiving.

Grace Whiting:

Thank you so much.

Sue Peschin:

Thank you for listening to This is Growing Old. We encourage our listeners to follow the Alliance on Facebook, Twitter, and Instagram. Visit agingresearch.org to learn more about age-related conditions, diseases, and issues that impact the health of older Americans. If you’re enjoying our show, please subscribe now and rate us on Apple Podcasts, Google Podcasts, Spotify, or anywhere else you listen to podcasts. Thank you so much and have a wonderful day.