JJ Elliott Hill (with her sister Natalie Elliott Handy) 8/12/25

(This interview has been edited and condensed for length)

Zack: JJ, please tell us about your caregiver journey, because I know you have a fascinating one. A dumpster fire is what Natalie called it.

JJ:  We call it the dumpster fire. So, I feel like I've been a caregiver all my life, and that is because I have my goal in life is to keep Natalie and Emily out of jail. So, I became like a babysitter at 10 because Natalie ran off all the babysitters one summer…  And so, I've always had that nature. I feel like that was in my heart. I just want to care for people and make sure that no one's unhappy…

 My story revolves around our mom, and she had early-onset Parkinson's at 48. She spent four years kind of chasing what the diagnosis was because no one knew… It was very hard to diagnose. She was finally diagnosed at 52. I was the one who was in the Tennessee area, wasn't married, and was still there with mom and dad close… but our dad was mom's caregiver, and he was always going to be mom's caregiver, at least that was what we thought… Our feeling was that Dad would always take care of Mom. Their entire future was set up financially. It was all based on Dad's pension, and he would always take care of Mom because Mom would pass first….

What started our dumpster fire was, Dad retired at 55, and at 58, he passed away on July 4th, playing softball from a massive heart attack. That was 2011. And until 2019, what I'll say is Mom was there, we were there, her symptoms were there, but she wanted to take care of herself. She wanted to be independent, and while she had struggles… she didn't want any help. She wanted to go to all the Parkinson's symposiums because Parkinson's was going to be cured. And life just kind of went on, and we were always checking in.

2019, though, she had an episode with her medication where her dopamine basically was dysregulated… she had a psychiatric episode where we had to have her admitted in the state of Florida, from Tennessee, which is a story in itself, how the system just completely does not understand Parkinson's and medical psychiatric incidents. But in 2019, that's really when we all stepped in. We've been through three assisted living facilities, where we were asked to find a new place.

Natalie: I guess it wasn't the right fit.

JJ:  …Now mom is in skilled nursing. We also tried her at home with our sister, Emily, but now she is in assisted living…

JJ: That's really where we are with mom… my contact with mom is every day. It could be for anything. While she's still cognitively, she's good. She has some movement issues. She's a hot mess. And, to try and work and to function as a married person, someone who wants to take care of family and have a life… we all three do that. It takes three of us to take care of Mom.

Natalie:  And our mom is only 70. I think that's important. Most people think of Parkinson's as an aging disorder, and mom was early onset at 48 and diagnosed at 52… And so she doesn't match the other folks in the skilled nursing facility, even in assisted living… The reality is, Mom is the youngest person. She does not have a peer group. And that can also impact your mental health. And JJ gets the most calls. Emily gets the second most calls. Our Aunt Jane, I told you there's always a middle. And then when my mom really wants the kraken to come out, then she calls me…

Selma:  In terms of caregiving for someone who does have the psychotic tendencies or mental health issues, what do you think is different about that in terms of caring for someone who has cancer or some other disease that doesn't impact their mental health?

JJ:  The episode with the dopamine was that the medication that she took, at that time, she was still medicating herself, Selma… She was so afraid that she would not have enough in her system that she would take it too fast. So, she had too much. She overdosed on that medication for fear that she wouldn't have enough. And what happened with that… is that there were hallucinations. People were coming after her. And initially, when I got there, I came in from North Carolina, and it was about 2 AM, when we got there, my husband and I, she was telling knock-knock jokes, and I was furious.

I had to get her to let me in the house, first of all, and I'm not a small woman. And I ended up going through a window in the back of her apartment. So that's one thing. I was mad. And then she was telling these knock-knock jokes and chewing on a pencil… we got her to the ER… the chain of command, what they say is, okay, go to the ER. That's what it takes to get her admitted to a psychiatric facility to try and get this medication done….

 She had strings coming out of her fingers, her hands, things like that. What I figured out, even on the way to Florida, because we had a driver, we couldn't put her on an airplane. That was twelve hours. And her jumping out of my car on the interstate in Atlanta… is that I think it's a lot like dementia or Alzheimer's. I had to go into her world and very softly and very calmly say to her, because the strings were a big problem for us. And even thinking about it now, I can feel that in my heart, how hard it was, and to touch her hands and to say, Mom, the strings aren't there. Let's look together. You can't be angry.

I still can't be angry with her when she gets upset or thinks something is real. And, mentally, she's pretty good now… But just to know that when she's having those episodes, regardless, it doesn't help me to get angry. It doesn't help me to get frustrated. I just have to go back to where she is.

Natalie:  Well, I'll add this. JJ called me, and I started using all my resources and my connections because I work in the mental health field… For a new caregiver, the system can be exceptionally overwhelming… It's one thing to do and manage medical. It's another thing to deal with behavioral health. And behavioral health does not crossover well into primary care or physical health… I typically was on the phone engaging with the doctors very differently because of my background. So, if you have a person who has worked in the mental health field, that's the time you get on the phone and say, I could use some help with navigating the system because that helps you with advocacy, that helps you with better understanding…

You have got to think about your own. If you are not in a place that’s centered and regulated, you have got to take a moment for yourself and take a couple of breaths… if you need to step outside, take your shoes off, and put your feet in the grass, do it… because when you’re not good, they’re not going to be good… when you can stay calm and in that middle ground, that will make that person feel safe, and they are more likely to come back down to a homeostasis kind of feel… Be a thermostat, not a thermometer.

JJ:  I'll just jump in and say the caregiver needs a caregiver. I had Natalie on that side of fighting to make sure we could get her into a placement. But then I also had my husband there, and the reason I needed him there was at one point, this is just part of the system… to get Mom transported to a different facility, they had to take her in a sheriff's car in the back seat. That was one of my hard moments when I was very angry…  that's why you have to, like what Natalie said, you have to recognize that because I did have to have a caregiver, and I had to let Natalie take over a lot of it and other people because I was emotionally embedded in the whole situation.

Natalie:  … You have permission to not be superwoman all the time. We talk about it especially on the podcast, but anything we do, we talk about it's important to have a team. Being proactive in how if your parent is aging, get your team together now before you need it. This is the time that you think about POAs. This is the time that you think about, can we all get aligned? This is the time that you ask the individual when they're in a calm and regulated state: “What are your wishes and what would you like done?” Because the kindest thing that the person you're caring for can do for you is to make the decision so that you don't have any guilt associated with any decisions you weren't planning to make in the first place.

Zack:  I’d like to apply that also to a job and an employer. Now I'm going to encourage all our readers to go back and read part one because we did touch on this. But, JJ, from your perspective, I don't know whether you were in corporate during this time or doing your own business. But, again, what does stepping out in the grass feel like when you're having to deal with a job or an employer?

JJ: At that time, I was self-employed… But I think about moments of crisis in my past when I was corporate, and even when my dad passed away during that time. And I left my job. You know, Natalie talked about her crisis. I left corporate America probably eighteen months after that situation because I wasn't the same. It was a grief situation. Even self-employed, Zack, when we brought Mom home from Florida, she came to Greensboro, North Carolina. And one of the reasons was that I was self-employed. Natalie was full-time where she was working… She had Jason.

There was a lot going on, and we thought it would be easier for me. It's not. It's not even when you're self-employed. I can't say that it's easy. It was a little bit easier, just that I had a lot more freedom, to go to the appointments, to take the calls, and not be called out for, you know, are you present? Are you absent? But I was absent for my business. It was a whole different responsibility. I had a team of employees, and I was letting my business falter. Nobody had a schedule until the day before they were supposed to show up for work and things. Oh, payroll. Sorry about that. Let me get that for you. So, there was some deficit in my work life.

Natalie:  And I think, you know, just to kind of piggyback, because JJ and I were in different places where she was an owner of a business, and she had people she was responsible for. I had people I was responsible for differently when I was employed. But what it did is this caregiving experience helped me to that direct experience and living in that allowed me to go back to my HR team, allowed me to go back to the owner of the company to say, Where's our caregiver benefits? How do I use my HSA? Why are we telling people that we could have used my HSA for the $2,500 in Uber rides?  Why didn't somebody tell why can't I have different benefits? Fringe is one of my favorite companies.

We love Jordan Peace. I share with him because he's been on our podcast. He's been a caregiver.  He started Fringe to give people different options. And I'm going to tell you, I tried to even get alternative benefits to meet the needs of our employees. That doesn't mean just the pregnant women and somebody has a baby and somebody has a death. I'm talking about the full spectrum. So that was one of my frustrations is when I said, Where's our caregiver benefits?  Respectfully, it was not received in a serious manner. And so that's another misalignment. Caregivers will jump to another employer who has caregiver benefits. 50% of caregivers will tell you, I will jump, and it's not just for a quarter anymore. It is what are the benefits that you can provide to meet me?  Because in the end, when we take care of our employees, they take care of the bottom line.

Selma:  I wanted to mention just quickly, you include laughter as a component of your work on your website. Why do you feel that's so important in the care space?

Natalie: Let's talk about the therapeutic value of laughter. Let's talk about the dopamine release… it takes more muscles to frown than it does to be happy and to smile… And a lot of times, I am laughing through the tears. And the moment when I had to crawl under the stall in the nastiest Walmart in North Carolina to help my mom when she was sick, I wasn't laughing in that moment, but I sure as heck have laughed ever since because I thought I'm a big woman going under the stall.… I think that there is something therapeutic about laughter because it can elevate your spirit. And in a time when you feel lonely and isolated and depressed, you typically don't feel so bad when you start laughing… 

Zack: Last question. It's obvious you both have taken your lived experiences, and you are doing some good in the caregiver world. And it's so appreciated. I believe you mentioned in part why you started the podcast. But if each of you could just briefly tell us a little bit about what it is you do for the caregiver world, and where people can find you.

JJ:  We have a podcast: Confessions of a Reluctant Caregiver. We are on every Tuesday with a new episode. You can find us anywhere that you find a podcast, Spotify, Apple, UK Health Radio. We're all over the world, and we are really blessed to be able to be heard in all kinds of places. www. www.confessionsofareluctantcaregiver.com, Instagram, Facebook, and we are a load of laughs on there as well, Zack. We do reels, and they're embarrassing, but we do them anyway. We also do training, and our training is at no charge. You can find that. It's on Zoom, and we will advertise when we're doing those. We do them live. And we've got Caregivers’ Playbook, which is a five-part series so far. We have just all kinds of fantastic training for dry mouth issues. So, you can find us on our website.

Zack:  I know we love all the guests on our podcasts, but give us one of your favorites and why.

JJ: It would have to be the governor, Marty Schreiber… The reason is that he laid his heart on the line. He wrote the book, My Two Elaines.  He had us crying within about one minute. But what he said was that his wife forgot him. They were sitting in a nursing home, the place that she was at… and she looked at him and said: “I have to tell you something. I think I'm falling in love with you.” Basically, that she was having an affair with him, that he wasn't her husband. And he said it didn't matter that she didn't remember me. It was that our hearts connected. We cried. We loved it.

Selma: Tell us about Care Forward.

Natalie:  Okay. So, because of our experience with our mom when we transitioned her from the community to skilled nursing, we had a lot of items that we could not bless forward. We couldn't give it away.  We couldn't sell it, couldn't donate it. And so, we came up with an idea so that we would not have to throw these critical essential items away… we created a technology platform that connected individuals in need with volunteers and partner organizations like businesses, churches, nonprofits, faith community associations, who contribute time, talent, or resources. It's called Care Forward. You can find us at careforward.io. We are just now starting in the state of Virginia. We have 11 counties, and we would encourage you that there's no requirement to volunteer, but if you go and sign up, you never know when you can be a blessing to someone else… So, listen to us on the podcast. You want a good laugh? Find more resources and come to Care Forward and serve your fellow neighbor.

Zack and Selma:  Wow! Amazing! Thank you!