Carter Center execs discuss impact of mental health, caregiving programs founded by Rosalynn Carter

Caption

On July 10, 2007, Rosalynn Carter testifies before a U.S. House of Representatives subcommittee.

Credit: The Carter Center

Rosalynn Carter's work is at the heart of the Carter Center's mission. The organization's executives explored the former first lady's career in this wide-ranging interview with GPB News, as heard on Political Rewind.

The panel:

Bill Nigut, host, GPB News' Political Rewind

Ellen Eldridge, GPB News Senior health reporter and Rosalynn Carter Fellow for Mental Health Journalism

Dr. Jennifer Olsen, CEO Rosalynn Carter Institute for Caregivers

Paige Alexander, CEO The Carter Center

TRANSCRIPT:

Bill Nigut: Paige, if you don't mind, I'd like to start by asking you. I know that the family is concerned about its privacy, and that makes perfect sense. But to what extent can you give us just a little insight about how life is for President and Mrs. Carter in Plains, Ga. right now?

Paige Alexander: Jennifer also lives in Plains so she can talk about the town buzz. But, you know, at the end of the day, the reality is they just want to be together, and they want to be at home in Plains. And so they have that now. And that's where they've spent the majority of COVID. And having that time together at this stage in their life is really important. And so Jason Carter, the chair of our board and President Carter's eldest grandson, has recently talked about the fact that we've known President Carter's eating ice cream literally every day. And he is comfortable. And this is Carter, who has always been very careful about his diet. I think they're just enjoying sort of this stage and being together. So it's aging gracefully is not an easy thing to do, as we all know. And it's nice that we can see them doing that and they've got each other.

Bill Nigut: And Jennifer, it is so extraordinarily lovely that they are together and in this stage of their lives.

Dr. Jennifer Olsen: Yes. So many of the times we talk to families and caregivers and the first question always has to be 'What matters the most?' You know, what's so beautiful about President and Mrs. Carter is that they have said that that time together is what they value. And they're able to spend that time together now. I think that's a great question for all of us to think about as we age, as each of us ages. What's going to matter to you the most in the final chapters?

Bill Nigut: So there's really kind of two components of what Mrs. Carter has done over the years in terms of mental health and in terms of caregiving, and they work together clearly.

Jennifer, I think what we should do is start by looking at Mrs. Carter and her commitment to trying to bring to light the issues that caregivers face and how she and you, now at the Institute, have worked to support those efforts out there. And there's a famous quote that Mrs. Carter has used in the past: "There are only four kinds of people in the world. Those who have been have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers." And I think that quote is very important. But I also like the quote that comes from the Institute, which is that you say that although caregiving will likely affect all of us at some point in our lives, many caregivers do not identify as caregivers. Too often, we hear caregivers describe themselves as just a daughter, husband, friend or neighbor, and you go on from there to make the point that we need to elevate our understanding of what it means, the difficulties of being a caregiver. So with that in mind, Mrs. Carter became a caregiver when she was quite young.

Dr. Jennifer Olsen: That's right. At the age of 12, she was first exposed to caregiving when her own father was sick with cancer, and she watched how that care experience impacted her mom, who is both caring for the rest of the family, working to bring in resources and trying to deal with all of the complexity of the care journey. And so I often think about how Mrs. Carter has been thinking about and exposed to caregiving for now 80-plus years and has seen that over time. We have recognized the number of caregivers is growing, but our supports and services has not in any way matched that growth. And one of the things that we all need to think about with that for our clients is that caregivers experience both physical and mental health impacts, negative impacts at higher rates than their non-caregiving peers. So this includes some of the things you would commonly think about depression, anxiety or substance use. It would include things like caregivers who are often not taking care of themselves, right. Missing that annual doctor's appointment because they are taking their care person, they're caring for somewhere. And so, so much of the work that Mrs. Carter has done has been at that intersection of mental health and caregiving and recognizing that these two things are so intertwined as she saw in her own family experience and listening to people—from the governor's mansion to the White House.

Bill Nigut:  Ellen, we'll talk about those things as intertwined mental health issues and caregiving. But to pick up on what Jennifer said, the Institute says that currently 53 million Americans are serving as caregivers to someone in their family who's aging ill or disabled. That is a remarkable number, and it's sort of the invisible number. We don't think of that as a group of people out there.

Ellen Eldridge: Yeah, and that number is going up with COVID and all the deaths. You know, we've got grandparents raising their grandkids now because of overdose deaths. All these things are coming to a head. We don't even have the data yet for all that. I just spoke with a researcher associated with RCI who is doing studies about the connection between grief and binge drinking. You know, these caregivers are doing what they can to get through their different situations and, you know, not taking care of yourself, just like Jennifer said, missing doctor's appointments. These things are going to get worse.

Bill Nigut: Paige, so again, mental illness is all a part of this. So let me go to that element. There's a story that in around 1970, I think when Jimmy Carter was campaigning for governor, Mrs. Carter ended up talking to someone who was coming out of work, I think, at a location where he was shaking hands. And that person talked about with her the mental health issues that were happening in the family at that time. And for some reason, it resonated deeply with her very quickly and started her on this path where she worked on a variety of things, including de-stigmatizing the issue of mental health, making sure there was insurance paid for mental health on par with what it paid for physical health and equal access to mental health services. Not all of that has been achieved, but it started many years ago.

Paige Alexander: Absolutely. And, you know, one of one of the issues that the Carter Center has always looked at, because when President Mrs. Carter started this adventure at the Carter Center 40 years ago is when they would travel overseas. They were seeing people in villages throughout the world that looked a lot like the village they came from in Plains. And so Mrs. Carter used to talk about how when she was on the campaign trail and she was, you know, outside, she was learning things on the trail that were relevant to what she had seen in play. And she had seen people with mental illness get picked up on the street corner in Plains and put in the back of a paddy wagon. And she never quite understood what the person had done wrong. And so her knowledge and her education about what people were struggling with and how those issues could be addressed came from her time getting outside the, you know, the bubble of Plains, but at the same time taking all of what she learned in Plains on the road with her. And I think that, you know, embracing the fact that, as Jennifer was talking about and Ellen navigating, advocating and coordinating someone's mental health needs and someone's caregiving needs, it's a full time job. And she knew that from when she was 12 years old all the way through. You know, the announcement with President Carter in hospice, she has seen that. She's seen that in her family. And she knows that other Americans have seen it in their families. So this is an important element of her taking lessons that she learned over her lifetime and figuring out where she could make a difference and hence the mental health program and the Rosalynn Carter Fellowship program that Ellen was part of and RCI. The setting up of these institutions are really what we're here to carry on.

Bill Nigut: Jennifer, what does it mean when we talk about the stigma around mental health, which we know still exists today? And it's one of the major issues that Mrs. Carter wanted to address throughout her life?

Dr. Jennifer Olsen: I often think about the stigma experiences within caregiver categories. You know, when somebody is trying to tell their coworkers or their friends that they're caring for someone. There's a different conversation when that's a cancer diagnosis or a car accident as compared to TBI or substance use. So stigma impacts the person who is struggling themselves and it impacts the caregiver because I then don't want to seek out help and I don't want to engage others. I consider that like the double stigma of the person who is in the caregiver role for a condition that we don't discuss. And that is incredibly isolating. There's so much work to do there. Now, we're in some ways judging the diagnosis of someone and their caregiver and then deciding what they should be served with and supported with.

Bill Nigut: What is TBI? Help our audience understand that term.

Dr. Jennifer Olsen: Traumatic brain injury. So you think about especially veterans. Yeah.

Bill Nigut: Ellen...

Ellen Eldridge: One of the things that I like best about the whole caregiving journey is that Mrs. Carter really listened to the people. She really listened to the constituents, and that informed her own passion, I think, for the mental health journey of different people. And of course, she saw herself in it. You know, having been a caregiver since the age of 12 and lost people and, you know, she was just honestly and genuinely passionate about it.

Bill Nigut: So let's go back in her career and look at some of the things that she accomplished starting in the early seventies. She was initially a member of the governor's commission to improve service for mentally and emotionally handicapped Georgians. That was created by her husband, Jimmy, as governor of Georgia. And so this goes back a very, very long way. And what's interesting about that, Paige, is that although she was able to make some progress in the state of Georgia, we know that as recently as just one session ago, the year before this past session, that legislators really decided to take seriously the fact that Georgia was really struggling to catch up to the rest of the country in terms of mental health services.

Paige Alexander: Yeah. You know, given that this is Political Rewind, I think it's probably also important to point out the fact that Mrs. Carter always understood the power of being bipartisan, and she did it in the governor's mansion in 1979 in the White House, and later with Betty Ford advocating on mental health and substance use disorders and women's rights. And as you said, as recently as last year, when she publicly supported the late Speaker David Ralston, for introducing the historic Georgia Mental Health Parity Act. And I think that that is indicative of her reaching across the aisle and recognizing the parity that if you break your leg, your insurance will cover it. But what happens if you have a mental health crisis? And if nothing else, during COVID, we've certainly seen so many families suffer and struggle with how to get the attention that they need and the resources. And this is, again, a lasting legacy for her.

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