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C. Grace Whiting Cares About Those Caring for Others

The National Alliance for Caregiving CEO is a compassionate advocate

By Julie Pfitzinger

Before the pandemic started, the National Alliance for Caregiving (NAC) and AARP completed an extensive study of caregiving in America, as they do every five years.

That produced "Caregiving in the U.S. 2020," released in May.

Since the last study in 2015, more than 9 million more caregivers swelled the ranks of those tending to loved ones; today, one in five Americans is a family caregiver.

Since COVID-19, more attention than ever has been placed on caregiving, and C. Grace Whiting, the president and CEO of the NAC, recognizes that caring for a loved one is both "a sacred and challenging responsibility." In its role, the NAC continues its policy and legislative work on behalf of millions of the nation's caregivers who are providing those vital services.

In a recent conversation with Next Avenue, Whiting, of Silver Spring, Md., spoke of the various types of caregivers (including members of "the sandwich generation," those who feel alone or isolated in their roles) and the support she believes all caregivers need and deserve.

Next Avenue: According to the 'Caregiving in the U.S. 2020' report, the health of caregivers is a significant issue. Of those surveyed, twenty-three percent say caregiving has made their own health worse. Are they referring to mental or physical health?

C. Grace Whiting: When we look at caregiver health, there's a question [on the report] about self-reported physical health, and then there are separate questions about emotional health and wellness.

I think most people, as they're approaching questions of mental health and wellness, they think about it as emotional strain. There's always this curious part; when we ask those questions, typically Latin American and Hispanic families and African American or Black families will say that they have less strain, even though they have fewer resources, less paid help, less support.

The report also states that twenty-four percent of those surveyed say they're caring for more than one person. What are the particular kinds of support that these caregivers need?

We call those kinds of caregivers 'sandwich caregivers,' because they're usually sandwiched between multiple people who need some type of care. And sometimes too, you may see people count the sandwich generation as people with aging parents and minor kids, even if they are able-bodied.

Regardless of the orientation of it, if you're caring for multiple people, you're typically more likely to be younger. You're typically less likely to have workplace protections available to you to help you in caring.

That's one piece: How do we help people who are in the workforce and trying to manage everything? You can't do all the things at one time.

I think the other thing that we see at the NAC, and what others have seen, is that family sizes are shrinking. You can also look at the trend across the United States and see millennials and Gen Z who may have more student debt, less savings, less economic opportunity. That translates into fewer available caregivers [in a family] and more people having to take on multiple care responsibilities.

In the past, many people wouldn't self-identify as a caregiver, but the survey claims more people are recognizing they are caregivers to someone in their lives. Is this encouraging for the NAC that caregivers may acknowledge a need for resources and support?

It's encouraging that there's more awareness of caregiving, especially in light of COVID-19, and the topic of caregiving being front and center.

"Caregiving can sometimes threaten roles in intense ways. In order to say 'I'm a caregiver,' I am also redefining what my marriage might look like."

I would say some of that enthusiasm is tempered by the fact that identity is a really tricky area.

There was a report that came out a couple of years ago, talking about the idea of role engulfment and our multiple identities.

For instance, let's say I take a lot of value in being able to say 'I'm a wife and a mother, and these are really important roles in my life.'

Caregiving can sometimes threaten roles in intense ways. In order to say, 'I'm a caregiver,' I am also redefining what my marriage might look like.

Our position at NAC has been rather than saying, 'Hey, you need to raise your hand and say you're a caregiver to get services,' that instead we need to be thinking about how we build pathways in the systems that offer support, whether it's health care, social care or long-term care, and where others will recognize the caregivers and invite them without necessarily having to use a label.

Within the report, you've identified several profiles of different types of caregivers. I'd like to ask you about a couple of them. The first is the 'feeling alone' caregiver. What are their characteristics?

The 'feeling alone' caregiver is really interesting for a couple of reasons. One, we found they were more likely to use technology. It wasn't making them feel more isolated, they were just more likely to use tech.

Another interesting thing is that this type of caregiver might live in the same household as the person they are caring for. And that's kind of counterintuitive because you think, well, how can they feel alone? But there's this sense of not having people who can understand and relate to what they are going through.

For many caregivers, we talk about the strain of the activities or tasks, but I think the part that's really challenging is that sense of complicated grief. A sense of loss for what your life could be like if this person didn't have the disease or disability – grieving not just the loss of opportunity, but maybe plans you had for the future, changes to the relationship, even wondering if you'll still have a good relationship if you take on this caregiving role. Fear about that.

I would say this person is someone feeling isolated, not having interaction, feeling alone and not having the emotional support they need to be engaged as a caregiver.

What about the 'no choice' caregiver?

I think the 'no choice caregiver' is one of the most fascinating areas that we've done research on because it's tied into that sense of identity. Since it's a quantitative study of caregiving, we don't know if they're saying, 'I had no choice — as in nobody else was available to do it.' This might be the ex who comes back to the spouse who betrayed them and decides to care for them, because nobody else is available to that person with dementia.

Another 'no choice' caregiver might say 'there was always a cultural expectation or a family expectation that I would take on this role. And I do that with pride. And I'm happy to be that person.' So there are a whole range of experiences with this type of caregiver.

Yes, talk a bit about people for whom caregiving isn't a burden. There are people who see it as something like a calling, right?

Sometimes we talk about caregiving in a way that it really sounds like a pain in the neck. And it's problematic from a policy standpoint. If it's so terrible, why would anyone want to do it? Why should we create policies? It just doesn't make any sense. If it was just all drudgery, nobody would do it.

"I think it would be a recognition that we rely on fifty-three million Americans to fill the gaps in our health and social care systems."

What we see when we especially look at multicultural populations is that they've got skills in those communities around social cohesion, around resilience that help them to see the meaningful experience that comes out of caregiving. There are lessons that white Americans and even Asian Americans could maybe take on; how do we rethink what caregiving could look like; what its benefits are, so that we have a more balanced view. This could allow people to be more resilient, to get through this situation together.

In terms of the pandemic and the impact on caregiving, what are the NCA and other organizations looking at in the long term?

For COVID-19, we've begun to really map out what we think is the impact of the pandemic on caregivers. And we have several working groups. We have a research group of about forty researchers from different academic institutions. We have some advocates in our network and some people that work for providers or health insurance companies. We've been testing that framework with them, and then we'll be coming together to actually launch a new resource, a clearing house for caregivers, in the near future.

The report also recognizes that the population is aging and there will be an increasing need for caregivers. What would you like to see happen in the country in terms of more resources and support for them?

I think it would be a recognition that we rely on fifty-three million Americans to fill the gaps in our health and social care systems. And in exchange for that, we should be willing to provide those caregivers with respite, with resources, for their own health and wellness, and to really help them navigate caregiving so that their families stay intact. That they can have that moment where they are just the daughter or they are just the son, and not having to always be the visiting nurse or the home care worker.

When you are taking care of somebody else, that is really a sacred and challenging responsibility, but it's also in the aggregate, what allows Americans to age in place, to age with dignity, to be independent.

In caregiving, even though it's uncomfortable or people may sometimes feel angry or sad or guilty, it's okay to feel those things because you're really angry, sad or guilty at the disease or the disability and not at that person. And the more you can keep that in focus, that this is just a life obstacle like any other, I think the better the experience will be.

Two Questions for Our Influencers

If you could change one thing about aging in America, what would it be?

Empathy. I wish we worked harder to understand with older adults, especially as tech advances and social isolation rises. Not putting a halo over older people, not objectifying them as 'cute' or 'children.' Empathy comes from being present, listening and accepting people in all of their glorious, messy complexity.  

How has the COVID-19 pandemic changed your perspective on aging? 

COVID has exposed what so many family caregivers and older adults already faced. We need to act now to tackle this crisis and the next: global warming, recession, racial injustice. If there's a silver lining, it's that caregiving – how we care for each other – helps us find common ground.  

Headshot of a woman with curly hair.
Julie Pfitzinger is the managing editor for Next Avenue and senior editor for lifestyle coverage. Her journalism career has included feature writing for the Star-Tribune, as well as several local parenting and lifestyle publications, all in the Twin Cities area. Julie also served as managing editor for nine local community lifestyle magazines. She joined Next Avenue in October 2017. Reach her by email at [email protected]. Read More
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