NJ Sen. Andy Kim Opens Up About Father’s Alzheimer’s Diagnosis

HARI SREENIVASAN: Bianna, thanks. Senator Andy Kim, thanks so much for joining us. You made your first speech in the Senate just a few days ago. And in it you remarked about your father’s diagnosis with Alzheimer’s. 

 

(BEGIN video) 

SEN. ANDY KIM: “I remember dropping him off at the appointment and sitting in the car alone left to grapple with our new future. Realizing for the first time that to my list of core identities as a son, as a brother, a husband, a father, an American, a public servant, I now add caregiver.” 

(END video)

 

SREENIVASAN: Why was it important for you to weave that into this conversation?

 

SENATOR ANDY KIM: Well, first of all it’s what I’m going through. It’s what my family’s going through. And I don’t think people can really understand my state of mind and what I’m trying to get done in the U.S. Senate without understanding the challenge that we’re facing. But also because of, it’s a challenge that millions of Americans are facing. You know, 7 million Americans have Alzheimer’s right now. That means tens of millions of family members are struggling the way that I am. And many, many more with dementia and Parkinson’s and other debilitating diseases and illnesses. You know, this is a crisis, but it’s often a quiet crisis. It’s often one where we don’t talk about it. But I’ll tell you, ever since I gave that speech, we’ve been inundated by thousands of messages from around this country of people sharing their own story. Even members of Congress that I’ve talked to have told me that they are going through this, that they haven’t talked publicly about it, but they are going through something quite similar. And I think it’s important that we lift these voices up in order to demand help and support for so many Americans that are desperately struggling right now.

 

SREENIVASAN: Why do you think it is that we don’t talk about it? Why there’s that stigma around it, why we’re keeping it quiet.

 

KIM: All of those other identities about me being a son, a husband, a father, they all bring me joy. You know, they all bring me opportunity. The things I love talking about. But the caregiver is one that brings my family certain pain. And as a result, I’ll be honest with you, like when I’m around my friends, like, I don’t wanna talk about it because in part, because I don’t wanna have to think about it every single moment. I’m overwhelmed by it. Like even just talking to you, I feel like just, you know, I feel like if I were to like lean forward right now, the tears would just kind of come out. Like, I am barely holding it together right now, because it’s hard. And it’s not gonna get easier. And so I think that that’s part of it.

But I also look, you know, in my job, and perhaps this is what others do, like in my job, like we send out campaign mailers of the perfect family, we try to show that leadership means that we have to be strong and impervious to stress, that emotions are a weakness. And what I am trying to show is that it’s okay to — we should say that we need help. It’s okay to say that we are struggling. And that’s the only way that we’re going to actually be able to create the kind of support needed for millions of families going through this. And I’m part of the sandwich generation too. I got an 8-year-old and a 10-year-old and a nearly 

 

SREENIVASAN: Yeah.

 

KIM: 80-year-old dad. And, and I can’t tell you how many times when I’ve talked about the strains and stresses of being part of the sandwich generation, so many people say, I went through that, or I’m going through that now, or I’m scared of going through that. We should be able to have these kind of conversations as a country.

 

SREENIVASAN: You know, what’s also interesting is that when we find ourself in that type of conversation, your political background doesn’t come up. And I, you know, I’m asking you now of the thousands of messages, I’m assuming some of them were people who probably, probably disagreed with a lot of  your politics.

 

KIM: Absolutely. I heard directly from Republican senators, Republican politicians, and I’m sure many of those that responded. But that’s exactly why I gave the speech, is because with all the divisiveness that we’re facing right now as a country, if ever there was something, some issue that connects us all, at a fundamental human level that can transcend tribalism – it’s about the love of raising a family and also the concern of a loved one becoming sick or injured. And so I’m trying to connect — I could have developed, delivered a speech about caregiving and Alzheimer’s in many different ways, including very partisan ways that goes into my concerns about cutting of Medicaid funding and other things. I chose not to because I chose to try to use a shared vocabulary that hopefully anyone that listens to that speech, regardless of their political ideology, age, geography — hopefully it resonated with them.

 

SREENIVASAN: Yeah. There’s a part of this where you told a colleague that you would “be forced to seek not the best care that my father could get, but instead the best care for my father that my family could afford.” If you don’t mind, explain the choices that you are forced to make between affordability and the quality of care for your dad.

 

KIM: Yeah. Well, for instance, you know, my father, not only is he cognitively declining with Alzheimer’s, but he’s physically declining. He is unable to walk. I have a home with stairs. I cannot figure out how to be able to manage to have him be able to be with us. We’ve had to consider — do we move houses? To…right now, he’s now at a level of challenge. Last time I took him to the doctors, he couldn’t even, he couldn’t even remember what a seatbelt was anymore. And I’m, you know, I — it’s getting to the point where I have, you know, a tough day job that requires me to travel a lot. I cannot be for the — with him. And he, so now the recommendation is he goes to a memory care unit. These are $12 to $15,000 a month — outrageously expensive.

You know, we’re talking about upwards of $160,000 plus a year just for the place where he is to be. How can anyone afford that? I can’t. It is exceedingly difficult. And it’s tough that I’ve had to cut back on putting aside money for my kids’ college fund or my own retirement. We’re the richest, most powerful country in the world. Why do we force people to make such trade-offs? And I’m doing better than many others. Many others are in even greater dire circumstances. 

 

SREENIVASAN: So, how, when you and your wife and your family sit down, how do you make this big kitchen table decision? What are you gonna do financially to get to that point? ‘Cause If you had a home healthcare aide that might be $85,000. If you — in New Jersey — adult day services, that would be $25, $30,000. I mean, there’s no cheap solution at all.

 

KIM: No. No. There’s no cheap solution. So a lot of it, you know, we, we have to endure. And as I said, you know you know, we’re, we’re trying to find every way we can to be able to manage this, and we’re in a better place than others. But it is sad, you know, to see. And it’s gonna get worse. You know, we have 7 million people with Alzheimer’s now. In 2060, in 25 years, we’re gonna have an estimated 14 million people with Alzheimer’s in this country. Not only is it gonna be devastating for families, it’s gonna be devastating for our country. I mean, I — it could very well strain Medicare and Medicaid and all of these other resources that we have as a country. All of us are affected by this. All of us are paying for this.

So, you know, I really do think that this needs to be a greater priority for us. When we talk about medical research and — a debate in my chamber in the Senate about whether we should be funding medical research — we see cuts, slashing funding to the NIH, to the NSF. That’s dangerous. That’s moving in the wrong direction. And I say this as someone, my father was actually in medical research. He was a geneticist that was literally trying to cure cancer and Alzheimer’s. And then now when the doctor asked him in a memory test, you know, What did you do with your life? What was your job? My dad doesn’t even remember that, you know. That Alzheimer’s has erased from my father’s memory his life’s work trying to cure Alzheimer’s. You know, these are the types of things that I hope people see that push us to say, this is worth fighting for. This is worth investing in.

 

SREENIVASAN: You know, I remember reading that you got into politics and ran for the House at a time when the person who had a job in front of you was wanting to repeal the Affordable Care Act, and you had a young baby at the time that needed healthcare. And now I wonder, here you are in the U.S. Senate.  You have shared something that resonates with millions of people across the country. What can you do about it now? Are there pieces of legislation, policy proposals, that you think have a chance to get through in otherwise incredibly divided Congress?

 

KIM: Yeah, so, you know, the, first of all, there is some legislation out there, but there’s more that’s needed. You know, a couple things I’m trying to work on, increasing our medical research. There’s great innovation happening. And these incredible scientists that I talked to are saying for the first time that they could potentially see a cure for Alzheimer’s or a prevention of Alzheimer’s coming forward. And I say that as someone who is likely predisposed to have Alzheimer’s when I get older. Like, we need to be pushing on this. 

Number two, it’s about this long-term care and care — unaffordable, unaffordability, you know, it’s unaffordable. We’re having a crisis right now when it comes to this and how it’s bankrupting families. It’s crippling people and they’re not able to get the care that they need. 

And three, that there are millions of caregivers, you know, 50, 60 million family caregivers and others who are putting aside their careers or trying to make sacrifices to be able to be there for their loved ones. (13:28): They — it shouldn’t be this hard for them. They should be able to pro — be able to receive some type of support and care to be able to help them. And so those are things that I’m working on. I’m drafting legislation. I’m trying to pull together bipartisan support. I talked to both Leader Thune and Leader Schumer and seeking their commitment to work with me on this to push forward. 

But again, in order to do that, I do think we need to build a movement. We need to build a caregiving movement in this country that speaks out about this and demands the support that is needed. 

 

SREENIVASAN: Just recently, the Senate blocked proposals which offered alternatives to the pandemic-era enhanced premium tax credits. Right? And, and I, and I think that they’re about to go up — according to the Kaiser Family Foundation or KFF — that by about $1,016 per person for about 22 million Americans. Here you are now at this decision point in your life about how costs are going to increase for your family. How does that maybe affect how you think about all those millions of people who are also at this point saying, I don’t know if I’m gonna be able to afford this?

 

KIM: Yeah. I’ve heard from a lot of people back home in New Jersey that tell me that directly to my face about how they have skyrocketing healthcare costs right now, whether they’re on the Marketplace, the ACA or other types of insurance, everyone’s struggling with this. And what I hope is that we see that we’re in it together. My father’s Alzheimer’s isn’t any fault of his own. You know, the challenges that so many are facing. You know, this is something that could very well affect any and all of us. And wouldn’t we all want to make sure that there is just some standard, some foundation of dignity and decency that we can be able to provide one another. I hope that we can get there. 

But you’re right. We’re in an incredibly divided moment and very divided about what healthcare means to us. (16:06): And I hope to be somebody that can stand up and show this from a human personal perspective. Too often — and I see this, and I’m honestly — it’s shameful that I see this sometimes here at the Capitol, where it’s clear that people are making actions or saying things about healthcare holding up potential progress because they think it’s better for their political career or better for, you know, their power party’s power. That’s wrong. You know, that is absolutely wrong. And we need to stop that. 

You know, it’s, you know, a lot of people think that Congress is deeply outta touch, and in many ways they are right. You know, people think that Congress is playing with other people’s chips and that they don’t feel the pain that others do. And I’m not saying that I can understand everyone’s pain, but at least in this example, I can, because I’m going through it.

 

SREENIVASAN: You are a proud son of immigrants to this country. You’re the first Korean-American elected to the U.S. Senate. And I wonder about the number of people right now being held in Delaney Hall, that’s the Immigration Detention Center in Newark, whether, you know, since the early months of this year. Are you concerned about how the opportunities that you and your family had as immigrants to this country are structurally different for someone new to America today?

 

KIM: Yeah, that, look, it’s not only structurally different, but the culture is different. You know, the culture of, of inviting people in to innovate and grow businesses here, to seek shelter here. I understand that, you know, we’re a sovereign nation. You know, we should have control over our borders. We want to keep our country safe and our community safe. But that is not mutually exclusive with all, with also being the country that has its roots in immigration and seeking that sense of opportunity. But instead, what we see is this culture of cruelty. 

 

And we see that with the Delaney Hall in New Jersey — a for-profit detention facility that is literally you know, literally trying to profit off of the cruelty that is happening right now. It is a billion-dollar contract of taxpayer dollars put towards detaining people, detaining immigrants. 90% of these immigrants at Delaney have no criminal history. Is this really the best use of a billion dollars for my state? When people are struggling? When people are having so much difficulty affording housing and public transit and healthcare? And, you know, it’s just, it’s just one of those things that just show how out of touch this is with the needs of everyday Americans. And it’s shameful. And something that I’ve stood up against. I’ve called for the facility to be closed. And it is not reflective of the kind of America that I believe in, or the kind of America that my parents came here over 50 years ago to be a part of.

 

SREENIVASAN: What is the emotional cost for you of caregiving? Because you mentioned that you and your father have had difficult times.

 

KIM: Yeah. Well, I think so often people think that caregivers, that there is just this bottomless reservoir of love that they’re doing this for their loved ones and that they’re happy to do it. And look, I’m a son that will absolutely do everything I can to give my dad the kind of life of dignity that he deserves, that any human deserves. But it’s not always easy. As you mentioned, and I said this in my speech you know, my father and I have had a complicated and tough relationship. And it is not something that necessarily comes incredibly easy for me to drop everything that I’m doing to be there at a time of need. But I know no one else will be there. And without me stepping in, my father will not have the life of dignity and decency that I think he and every human deserves.

 

SREENIVASAN: Senator Andy Kim, thanks so much.

KIM: Thank you.