March 23, 2026
Undervalued and Underpaid: The Unjust Cost of Caregiving with Jesse Jackson, Jr. and J Smiles
Caregiving doesn’t just “get hard” over time. Sometimes it detonates your life overnight, and you’re left rebuilding your health, your career, and your family rules while dementia keeps moving the goalposts. That’s why this conversation with Jesse Jackson Jr. hits so deep. Jesse Jackson, Jr. had J Smiles as well as two other guests talk honestly about what it costs to care for a parent when the system quietly depends on your free labor, then acts surprised when families burn out.
We get into the chaos that follows when an untrained family caregiver becomes the care team, the administrator, the advocate, and the safety officer all at once. We also name what people don’t want to say out loud: the denial that delays a diagnosis, the isolation that makes you feel like you’re losing your mind, and the health risks that come with nonstop stress and no sleep.
We don’t stay in despair. J explains how comedy became a lifeline and why humor can be real caregiver self-care, not a distraction. Jesse Jackson, Jr. and Atiba also dig into boundaries, privacy, and what happens when outsiders try to turn a family’s tragedy into content. Then we turn toward solutions with a clear call for caregiver support policy: mental health care, protections that help caregivers keep their jobs, and legislation that treats family caregiving like the essential work it is. If you’ve ever wondered why so many caregivers leave the workforce, Jay’s “brain drain” insight will stay with you.
If this resonates, subscribe, share this with someone who’s caring for a parent, and leave a review so more families can find it. What kind of support would make the biggest difference for caregivers where you live?
**Today's episode includes clips from The Jesse Jackson Jr. Show, originally recorded on December 10, 2025.
"Alzheimer's is heavy but we ain't gotta be!"
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00:00 - Mashup Setup And Why It Matters
01:53 - Supporter Shout-Out And Advocacy Numbers
02:59 - Undervalued And Underpaid Caregiving
06:41 - Family Legacy Before The Diagnosis
09:50 - Overnight Shift Into Full-Time Care
13:11 - Burnout Crisis Then Comedy Lifeline
17:27 - Privacy Violations During Family Tragedy
21:15 - Hard Boundaries And IRS Nightmare
25:20 - Denial Isolation And Practical Care Tips
29:10 - The Policy Fix For Caregiving
30:22 - Where To Follow And The Brain Drain
35:04 - Closing Pep Talk And Subscribe
WEBVTT
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Hey family, this episode is a bit of a mashup, a remix.
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I had the honor of being with Jesse Jackson Jr.
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on his podcast discussing family caregiving, the toll it takes, the financial, emotional, and physical costs, and just how poor of a job we're doing as a nation to take care of family caregivers.
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Now, this came in response to Jesse's op-ed in the U.S.
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Day-to-day newspaper, really outlining what he and his family were experiencing as they cared for his father, the incomparable Reverend Jesse L.
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Jackson Sr.
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Well, unfortunately, since this originally aired, Sr.
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has lost his battle, but the information remains pertinent.
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I hope you enjoy and I look forward to your feedback.
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Parenting up Caregiving Adventures with comedian Jay Smiles is the intense journey of unexpectedly being fully responsible for my mama.
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For over a decade, I've been chipping away at the unknown, advocating for her, and pushing Alzheimer's awareness on anyone and anything with a heartbeat.
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Spoiler alert.
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That's why I started doing comedy.
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So be ready for the jokes.
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Caregiver newbies, OGs, and village members just willing to prop up a caregiver.
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You are in the right place.
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Hi, this is Zetty.
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I hope you enjoy my daughter's podcast.
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Is that okay?
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Today's supporter shout-out comes from YouTube, William Gaynor7602.
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And this was in response to one of my tidbits about advocacy day in the state of Georgia.
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I gave a whole bunch of numbers about basically they're getting free labor from us, the family caregivers, in order to keep the healthcare system afloat in Georgia.
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Gave a whole bunch of numbers in money and in hours.
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William said, dot dot dot.
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Don't hold your breath for their help.
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But thanks for this revelation.
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Also, it's best to teach or change young people's diets.
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It is contributory.
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I agree.
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I agree completely.
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Young people, old people, medium, middle people.
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Change your diets to a brain healthy situation.
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Now, if you would like to be the recipient of a supportive shout out, you know what to do.
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Leave a review and a comment on Apple Podcast or YouTube.
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Today's episode, Undervalued and Underpaid, The Unjust Cost of Caregiving with Jesse Jackson Jr.
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and me, Jay Smiles.
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We have a very special guest who will also be joining us this hour, Janae Smith.
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Her life shifted dramatically when her father passed away suddenly, and her mother was diagnosed with dementia soon thereafter.
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Trained as an engineer, product engineer, and lawyer, she became a full-time caregiver.
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She sought refuge in comedy, discovering both healing and a new calling as Jay Smiles.
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She has since performed nationwide and abroad, sharing stages with comedy greats while weaving her caregiving journey into her art.
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In 2020, she launched the podcast Parenting Up Caregiving Adventures with comedian Jay Smiles to create a space for caregivers to lead with levity because humor actually heals.
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I'm very looking forward, very much looking forward to our conversation with Jay Smiles.
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Janae, I just want to say hi to you right now.
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Hi, Janae.
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Hi, how are you, Jesse?
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I'm certainly grateful that you're with us today.
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And boy, we have so much in common, and so does uh so does the Tiba on this question of caregiving.
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Um, but to introduce our program, let me allow our regular co-host and and uh contributor to the Jesse Jackson Jr.
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Show, our conversations with the Tiba, to set the stage for the next hour.
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Tiba.
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Yeah, thank you, Jesse, for that.
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And um, Janae, thank you so much for being with us.
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Janae, um you know, first off, in terms of your journey, I feel like it would be impolite for me not to share that we have known each other for the better part of 25 plus years.
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And um knowing both of you I'm just thirty-two.
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Well, I'm not gonna say where we met then.
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Um the ativa file.
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Release the ativa file.
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But that said, as you know, Jesse wrote in a very profound um opinion editorial a few weeks ago about caregiving.
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And I know that the country and the world uh know the story of his father and all the amazing things that his father accomplished and did over his life.
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And now Jesse has told, started telling the story more publicly about you know what has been going on behind the scenes from a caregiving standpoint.
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So very gracious and very grateful to um Jesse for starting this conversation.
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And it's one conversation that I'm sure that families and people are having and friends among friends for years, but in terms of the national dialogue as this goes along.
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But but as we stage this conversation, as you and I have spoken about this, I was hoping that you could first also tell us a bit about your father and your mother and you before we get into where your life changed a few years ago.
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So, Janae, um, as I was mentioning, what I was hoping is that you could give us just a little bit of background about your parents and then you as a family, and then um we can go into talking about where how your life changed when your mom was was your mom's diagnosis.
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Absolutely, my pleasure.
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My father uh is deceased, his name is Jock Michael Smith.
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The I guess some of the high points would be that he was the only black man to have a national partnership with Johnny Cochran.
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My father was the um cornerstone of what we now know as the National Cochrane firm.
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He was very close to Mr.
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Cochran.
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I'm still very close to Mr.
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Cochran's widow.
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My dad um was a uh a pillar of the community.
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He did a lot of things in terms of civil rights and he did a lot of things in terms of the law.
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He represented uh the estate of Mrs.
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Roser Parks.
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He represented uh the King family.
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And at the time that he passed, he actually had the largest verdict for an African-American lawyer in the nation, 1.6 billion.
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And a little known fact is that while he was doing all of this juggernaut legal stuff, his true passion was always sports, specifically baseball.
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And from 1985 until his passing in 2012, he amassed the largest collection of Game Warren Sportsman billion in the world.
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More than a black man, more than a white man, more than a Jewish person, more than a Chinese person.
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And I call it a great um legacy of my life was that after my dad's passing, I was able to uh ink a deal with the Smithsonian.
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And so our collection is my family's collection that I am spearheading.
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We're now the we're really we're really the reason why the sports gallery exists in the National Museum of History and Culture, also known as Black Sonian for anybody in DC.
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Um my mother is originally from Montgomery, Alabama.
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My dad is a New Yorker, but they met in Alabama.
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My mom was a part of the civil rights movement as a young girl, and she patterned her entire life around following uh Dr.
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King and individuals like uh Jesse's father.
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Uh they marched together a lot.
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She was jailed, all the things.
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What she decided to do was hey, how can I keep pushing forward the people's, the poor people's campaign?
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And so my mother, uh by trade, is a CPA.
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She was a forensic accountant expert witness.
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She was the first woman of any color to have the type of consultancy firm that she had in the nation.
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So she made sure that um utilities, gas, electric, light, telephone kept our rates reasonable.
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And so they hated her for it.
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They actually tried to kill her a few times.
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I got a picture on the on the bookshelf behind me about that.
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So the uh the really odd thing about me becoming a caregiver is my parents were so healthy and self-sufficient, or so I thought.
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My dad had a massive heart attack on the couch at 62 years old.
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My mom at 62 was within three months of my dad passing, was diagnosed with two forms of dementia.
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So I'm an only child.
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I grew up not having to help them do anything.
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They didn't ever need$5 from me.
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They didn't ever need me to uh help them turn on their uh cell phone.
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They were texting and they had a blackberry before I did.
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I had a money, they did.
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So I wasn't prepared to have to help or to have to step in.
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The life I created, I went to Howard, I went to Stanford, became a lawyer.
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I was living and working between Africa, Europe, and the United States.
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Wow.
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Really combining my love of advocacy, which is a part of me being from Montgomery, Alabama, to help young African girls and women really have a better way at STEM things and to use my design connections with uh in Italy to make all that happen.
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And then to come back to America and get the seed capital.
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And all that was working great.
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And then literally overnight, it all blew up, and I needed to run my dad's law practice, run my mom's consulting firm, keep my life going.
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Oh, and figure out is my mama gonna die?
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No, is she?
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Is she dying?
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Because no one had told me that a traumatic event in life could trigger the early onset of Alzheimer's.
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So it took us a minute to determine what it was.
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I I am uh uh I'm just sitting here with my mouth wide open because um the trajectory of your life was on one path, and then the care of loved ones suddenly changed the trajectory, which obviously can come at great costs.
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Um I mean, it is it is almost as if stepping into the ring, someone literally knocks you out.
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And you know, my father in my case, uh Tiba, is you know, a 240-pound, uh six foot four, six foot six individual who literally has to be maneuvered.
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Now, the onset of dementia, that is a parent who literally can wander down the street and you not find them from someone who is as extremely as capable of Miss Smith's father, a leader in the in the Cochrane firm, if not the main person behind Johnny Cochrane, all the way to having to provide not only for him, but then ultimately providing for her mother.
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And that is a career-changing event.
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And it is happening to more than 63 million Americans as we speak.
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Tiba?
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Yeah, and and so you know, in terms of going into that, thank you, Janae, for sharing that.
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Also, so what how did you how did you embrace that or how did you deal with that?
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Because you also had mentioned the sports collection and the museum, and we know you're Jay Smiles, you're a comedian.
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So, how did you how what was that adjustment like for you?
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And how did you get to here?
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The adjustment was chaotic.
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It did not look cute, it wasn't cute, it wasn't pretty.
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I made a lot of mistakes.
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Um, and by mistakes, I'm really speaking of my self-care, how what I would do to manage who am I going to be in this new normal.
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To be really honest with you, I didn't believe them when they said my mom had two forms of dementia, Alzheimer's and normal pressure hydrocephalus.
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They said, Oh, you're gonna have to keep her for the rest of her life.
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And I was like, What are you talking about?
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She's fine, she has a business.
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The only thing this woman is known for is her brain.
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How can her brain be broken?
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I would have been better with like liver cancer.
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Not that I want her to have cancer, but it would have made more sense.
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I was like, it cannot be her brain.
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That's all that everyone celebrates about her.
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So uh when it became obvious that my mother really could not manage any of her affairs, like within 90 days, she could not drive, she couldn't write a checkbook, she didn't even know if her if she was going to the bathroom on herself.
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And I said, okay, all right, uh, I gotta figure this out.
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Now, I got into family business mode, right?
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This is survival, and it's the world against me and my mama.
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And on behalf of my daddy, I got to take care of his boo.
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Now, what happened though is I gained a bunch of weight.
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I almost had a stroke.
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I was doing very unhealthy things, alcohol, maybe some drugs.
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I know this is a family show.
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What I'm gonna say is I made it through the point and through the time, but it was awful because in order to care for my mother and get my parents' affairs in order, I had to literally leave myself out of the equation.
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It really did stink.
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And it was actually uh my physician who told me, hey, Jay, you're gonna die before your mom if you don't change something.
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About two or three years into uh my mom's diagnosis, she said, your numbers are going all in the wrong direction.
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You're not sleeping, you're on the verge of a stroke.
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You gotta switch something up.
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And at the end of the switch up was comedy.
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I she told me to try to find a hobby.
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Literally, it was on group on, and I saw a class.
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I thought I was just gonna have a way to blow off steam rather than picking up Remy Martin 17 or 38, which is what I was drinking for two years straight.
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I said, I'm gonna just I'm gonna go to this comedy class, I'm gonna meet some new friends.
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They don't know who I am, they're not gonna ask me for nothing because I also gotta say it was a lot of stress with all the people who decide that they failure.
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My daddy left me five billion dollars and they won it.
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So I'm I'm like, hey, there's no McKenzie Scott over here.
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I don't know what y'all are thinking, but most of those verdicts were severely reduced.
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I mean, I'm good, but I ain't got five billion.
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Um, so comedy came literally throughout a medical crisis for me.
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And I ended up falling in love with it.
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Jay Smiles was born, and uh ultimately, about five years after I started comedy, we go into the pandemic.
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The pandemic hits.
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I cannot perform live because I'm worried that I may bring the virus back to my mom.
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And that is when the Parenting Up podcast started, and that really uh was my stronghold into becoming a care advocate um globally and throughout the nation.
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I um I'm so identifying with your path because wherever there's comedy, there's also mass tragedy, and wherever there's mass tragedy, um out of the trauma comes a humor and comes a response to it that really means self-care.
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Uh, that you have to make light of very, very serious subjects.
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And I don't think everyone fully appreciates that.
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I I know that we're gonna have an even more fascinating show, and we've got at least three more minutes left in this segment.
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But in our own family this morning, Atiba, I woke up to my mother allowing friends to see my father.
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Someone took a picture of him, and then that picture became part of a newspaper article.
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And we've been walking back all of this day the narrative of the access that we gave to a family friend who then had a photographer, who then sold the picture, and then reeling it all back in, which has nothing to do with the individual care, in addiction, in addition to what someone else took upon themselves to notify the public what they think they had a right to do.
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So I'm sitting here saying to myself, if it weren't so serious, it would be laughable.
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Because the only way to handle it is to say, Isn't this just us?
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I mean, isn't this just us taking advantage of a person's tragedy, a family's tragedy?
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It's hard enough, Janae, on its own, without someone engaging it and trying to make uh a selfie or a snapshot or a a newspaper story or be a sudden reporter to the tragedy of it all.
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So, what I want to say is I am so proud of you.
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I'm proud of the healing that you're sharing with us that came from how you took the tra the traumatic experience of um the tragedy of dementia uh and the loss of memory, which our family is dealing with, but then you made light of it.
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I mean, my brothers and sisters and I are laughing at some things today that we have never laughed at.
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Uh, and we laugh at people who who, in our sadness, you know, don't know the joy that we're finding in in this hour and in this moment.
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With that said, um, we have about a minute before we come forward at Tiba.
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Uh, I'm gonna let you take us out.
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Yeah.
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And Jeanette, if you if you will allow me, you know, when I think about your father often, I told you like meeting your dad was like one of the greatest things for me because it was the first time I'd seen an African-American man who had was doing all these different things.
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And I'm rocking right now because I'm thinking about your dad with something that he said.
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He talked about how he would he was using the sports memorabilia collection, that part of which is now, I mean, and Jesse, to give you an idea, um, Jesse Owens track shoes from the 1936 Olympics are in that collection.
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They're in the museum.
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Um Serena Williams' iconic outfit from the U.S.
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Open is in that museum.
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But there are other things, Muhammad Ali's boxing gloves and robes that I can actually say I physically put on.
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But his stories that he'd used with that sports memorabilia collection, particularly talking to young people and kids and motivational speaking, was about how they these people went from tragedy to triumph.
00:20:10.640 --> 00:20:23.119
So, in terms of what we're talking about today and how you just eloquently spoke about with um Janae and her story, I'm gonna stop, is this is about going from a tragedy and figuring out ways that we can get to a triumph.
00:20:23.279 --> 00:20:24.319
I'm Jesse Jackson Jr.
00:20:24.480 --> 00:20:28.799
listening to KBLA Talk 15 to 80 more with the Tiba on the Jesse Jackson Jr.
00:20:28.880 --> 00:20:29.599
show when we come forward.
00:20:29.759 --> 00:20:38.160
Janae Mario Smith's life shifted dramatically when her father passed away suddenly and her mother was diagnosed with dementia.
00:20:38.400 --> 00:20:44.240
Janae serves on Hilarity for Charities Care Advisory Board and links to Equity's Community Advisory Board.
00:20:44.400 --> 00:20:56.720
She continues to balance her professional achievements and advocacy with her most important role, caring for her mother, Zeti, in their 13th year of navigating Alzheimer's and NPH.
00:20:56.880 --> 00:21:07.440
Her unique journey combines advocacy, humor, and resilience, making her a powerful voice for both caregivers and communities impacted by Alzheimer's.
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Jade, welcome forward to the Jesse Jackson Junior Show and our conversations with Atiba.
00:21:13.519 --> 00:21:15.119
Thank you so very much.
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Uh, if I may have a moment in the previous segment, Jesse, you gave a very vulnerable um look into what happened when someone came to visit your dad and they decided to do something distasteful with the photo.
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I have had so many similar circumstances that no one is allowed to visit my mom without me in the home anymore.
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I had to make a hard line.
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I'm considered to be a witch with another first letter by many family members and many of my mom's friends.
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They're like, Who are you?
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I knew her before you were born.
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You don't know what you're doing.
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And I let them have all of their opinions because what's most Important is that I keep my mom emotionally stable and happy.
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And then I need to have myself as grounded as possible.
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And if people uh mean her some harm, or if people are just really ignorant to the process of what it means to have dementia and how quickly things can unravel, I will wrap up this point with this one example.
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The IRS decided the government's taxing system decided that I was money laundering, and they decided that my mother was dead and I wasn't claiming it.
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For three years, they made me prove my mother was alive.
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While they had no record of a death, there was no obituary, no funeral, nothing online, but it was from scuttlebutt talk around Montgomery, Alabama.
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Why did Janae, why, why is why is Jay and Zettie in Atlanta?
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There must be something nefarious going on.
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Why would she leave her hometown?
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And so I had to actually let an IRS manager into my home while my mother was asleep to lay eyes on her.
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Unbelievable.
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Unbelievable.
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Well, that was the rule in our home.
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We don't let people in.
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And uh somehow this particular uh issue got around us, but I cannot believe, and I'd like to talk to policy, talk some policy in uh maybe in the next segment about what can be done to support caregivers, Janae, because I think you have an interesting perspective and a very vital one.
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Uh Atiba?
00:23:55.200 --> 00:24:03.839
Yeah, so Jay, you know, it it Jay smiles, you know, it's it's really amazing to me.
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