In this debut episode of the "Truth, Lies, and Alzheimer's" podcast, host Lisa Skinner, a dementia expert with over 30 years of experience, interviews Lillian Caldwell, president/CEO of Passionate World Talk Radio, author, and former caregiver. The conversation begins with Caldwell’s background as a writer and her motivation to create an internet talk‑radio network that amplifies unheard voices, delivers actionable content, and tackles taboo subjects. The dialogue then shifts to Caldwell’s personal experience caring for her husband, who suffered from Alzheimer’s disease. She describes his anger, physical aggression, delusions, and eventual decline, emphasizing that the disease, not the person, drives such behaviors. Both hosts discuss the concept of “grieving twice” – first the loss of the person’s mental capacities, then the eventual physical death – and share poignant quotes from other caregivers. Caldwell highlights the systemic lack of practical caregiver education, noting that health agencies often provide lifestyle advice but omit guidance on handling violence, delusions, wandering, and other crisis moments. She stresses the urgency of treating Alzheimer’s as a looming pandemic and calls for open conversation. Practical advice offered includes cultivating patience, recognizing that challenging behaviors are not personal, and leveraging state‑level caregiver support programs. The episode concludes with resources: Caldwell’s website (passionateworldtalkradio.com), Lisa Skinner’s Minding Dementia Facebook support group, and references to related books.
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Are you caring for a loved one with dementia? You don't have to figure this out all on your own. Welcome to Truth, Lies Alzheimer's, the show that helps you reimagine a new relationship with your loved one, a relationship a little more free of stress and anxiety. Join host Lisa Skinner and her 30+ years of experience Skinner as she guides you on a new path to a better relationship with those you care for. Here's Lisa Skinner.
Here at Truth Lies Alzheimer's, the podcast, everyone has an Alzheimer's story, including our very special guest today, Lillian Caldwell. Lillian just happens to be the president and CEO of our network, Passionate World Talk Radio. And Global Media Network. She's an active author of 3 fiction books, a former disc jockey, and is currently the host of the radio show Cool Your Heels, which airs on Passionate World Talk Radio in 176 countries and has an audience of approximately 7 million viewers a month. This is one extremely accomplished woman. So without further ado, let's start the conversation with her. Lillian, welcome to the debut episode of Truth, Lies Alzheimer's, the podcast. Tell us a little bit about yourself and what inspired you to create the passionate World Talk Radio network.
Well, I've been a writer for many, many years. I've been doing it for 20 years. And when one of my nonfiction books, Teenagers: A Bewildered Parent's Guide hit the market, much to my surprise. So it got on the top 10 Ingram distributor list, and that encouraged my publisher to send me out up and down the East Coast and as far as Louisiana for TV and radio guests. And one of the things I learned while I was on this tour was that unless you were a celebrity, a famous a sports figure or a politician, chances were you would never be invited as a normal peon to be on a TV or radio show. And that really bugged me because I know this peon had something to say about raising a child by herself and that there are other people like me, moms and dads who were raising their teens and had no idea of what they were really doing because there was nothing really out there that related to what they were doing. So acting on my gut, I decided, hey, I'm going to put up an internet talk radio station. Oh, but women don't do that. They're, they're hosts. They're in the front when they do the news, and they're usually blondes or brunettes or redheads, and they're pretty, and you don't qualify. And I said, I don't have to be pretty. I have a message that there are people out there who write books or they're experienced in something, and they need to have their voices heard. And that's exactly what I'm going to do. And 16 years later, I'm still doing it.
Well, I sure applaud you for having the guts to go for it and, and look at the success you've accomplished since then. That is terrific. Tell us a little bit about the mission that you have created around this network.
When I envisioned the station, I put together 3 principles that I felt were important for the station to be built on. And based on these 3 principles, I would be able to take it forward into the future. So what are these principles? One is to provide a conduit for voices that are not otherwise heard. Checkmark. 2, to provide quality information and content to the listener so they can use it immediately in their business, personal, and spiritual life. Checkmark. And 3, sweep out from under the taboo and forbidden topics no one wants to discuss. Discuss them and either provide a call to action or an action plan so An individual can leave a ripple behind either in their own community or a universal community. Checkmark. And we have in our mission statement to go further into those stories and those experiences that other radio stations or internet talk radio stations don't want to go into because it gives you that uncomfortable feeling. Red ants traveling up your leg is a good example. But people have a tendency to want to be comfortable, and they don't want things to make them feel uncomfortable. And lucky for the rest of the world, I don't have that problem. I want them to remember. I want them to be uncomfortable. And that's my mission, pretty much.
Well, that's incredible. And that actually is a perfect segue into the topic that we're going to be talking about with you today, because again, this is the podcast Truth Lies in Alzheimer's, and that too is a part of my dedication in what I do as an expert in Alzheimer's disease and dementia. I saw the need 50 years ago for people to, to start becoming more aware of Alzheimer's disease and start talking about it. And I know this topic is very personal to you too, Lillian. I'm going to ask you about that in just a second because your husband actually suffered from Alzheimer's disease. Isn't that correct?
Yes.
And you were his caregiver?
Yes.
Okay. Well, share with us how that journey with your husband has had a lifelong impact on you. And have you been aware of the same things that I have observed over the last 30, 40, 50 years, that people really are uncomfortable talking about this topic?
People are uncomfortable about talking about topics that they are afraid of. Yes. The saying, well, there by the grace of God goes he, better that he should have it than I should have it. Is something that people have been saying, I think, since the beginning of time. But the problem is that with my husband, he knew he was going to get it because everybody in his family going back 90 years, 100 years had Alzheimer's.
Oh, wow.
And he was angry about it. He was one of these adults who went to Brock Science in New York City, which is a specialty school for bright kids. So he was affronted that God had decreed that he would have Alzheimer's, and he was just angry, and he— anger resulted in physical action with fists. That pounded into walls. And I didn't stick around to see if he was gonna pound into me. But people have to understand that that was not my husband. It was the disease. And that's what a caregiver has to recognize immediately, that the person that they once loved and care for is no longer there. And you have to come to peace with it.
That's one of the things that I've learned too, Lillian, which has been a huge lesson for me. And I have found that it's absolutely key to unlocking kind of the secret to managing this disease is first understanding what the disease is doing to the person who's suffering from it. And, you know, many of the family members that I've worked with over the past 3 decades have shared with me that watching a family member suffer from dementia is like losing that person twice. First through the decline of the disease, and then through upon their physical death.
Yes, you're going to look at yourself and you're going to forgive your husband or your wife or whoever has the illness from whatever actions happen because of what the disease has done to his or her brain.
Yeah, that's a really interesting perspective. And I actually have a couple quotes from people who have been on the same journey as you have and as I have. One woman whose mother is currently progressing through dementia, writes, "I don't know how to come to terms with the loss of a mother who's still alive. The person I would always run to, who would love me and hug me and tell me everything is going to be okay, is no longer there." I find that absolutely heart-wrenching. Another woman expressed it this way, nothing, is worse than grieving twice for a loved one. First the diagnosis and then watching the decline, then the final day.
Yes, it's very difficult. I mean, he was diagnosed with Alzheimer's. The neurologist calmly told me to find a nursing home, dump him, and walk away. I have spoken to people on LinkedIn, especially the men, and they're tormented by whether their parent or their wife or girlfriend who has Alzheimer's, and they said they would rather shoot themselves than to have to go through that type of experience again because it stripped them of their own humanity. We are not taught how to handle death. People don't talk about death, the final frontier. And cancer used to be like that. Nobody spoke about cancer because of what it did to your system. And it used to be only for old people. But now kids have cancer. So parents have to come to an understanding of how to deal with a child who has cancer that may come back in 20 years. Or worse, the treatment won't stick, so they'll lose their child. What's the saying? You don't bury your children before you die.
Well, you know, you raise a very interesting point, and coincidentally, the World Alzheimer's 2022 report just recently came out, and that's one of their focuses on the future of treating Alzheimer's disease because What was it, 10, 11 years ago that your husband passed from Alzheimer's disease? And now 10, 11 years later, one of the things that they brought out in the report is how the diagnosis of Alzheimer's disease is treated by most physicians, that they give them the diagnosis and then basically it's go get your life in order, get your affairs in order. So not that much has changed. No, I haven't seen much change in the 50 years since my grandmother was diagnosed with Alzheimer's disease. And that's the whole reason why we need to raise awareness. And because the numbers are staggering of how many people are projected to develop Alzheimer's disease by the year 2025, the numbers are projected to triple. So I think we really, really need to talk about it, not be afraid to talk about it, pull our heads out of the sand, and make a plan because we are not prepared for this oncoming crisis that's looming over our society.
It's a pandemic. It's a pandemic. It's time to come out of the closet and acknowledge that we will get sick, including our brains. Now I receive documents from various health organizations telling you what kind of exercises you need to do to avoid dementia. They'll tell you what kind of foods to avoid. Yeah, but you know what they don't tell you? How to handle your spouse when they get violent. How to handle your spouse when they become delusional. How to handle your spouse when they go out for a walk and go missing. They don't talk about these things.
Yeah, and those are all things that take very specialized skills and training and education.
Yes, yes.
And that's what we're all—
and that education is lacking. And it doesn't matter what age you are. I have spoken to teens who have cared for parents with Alzheimer's. My son was exposed to his grandfather who had Parkinson's, and he grew up with his grandfather and Parkinson's, so he was a lot more aware.
And another thing that people don't realize is the things that you mentioned, they come out of nowhere. Like a California earthquake with no warning whatsoever, and people aren't prepared. And their gut reaction is not typically the best practice because the correct reactions are counterintuitive to the way our gut tells us to react. So it's a complete reset of the way people think Think and Paradigm Shift. I have one more question for you, Lillian, um, because I think a lot of our audience would be really interested in hearing from somebody that has been on this journey and has gone through it from soup to nuts. What have you learned from your experience being a caregiver to your husband? And what would you like people to know that you learned through this experience that would be very helpful to them today?
Number one, be patient. Yeah, let it roll off your back. It's not personal.
Oh, I can't agree with you more on that. But it's hard.
It's hard when you're in that fight. And the other thing I would suggest strongly is there are a lot of states that have support for caregivers. It's new, but they are trying, and you need to contact them and find out what you can. It doesn't have to be I against the world.
Well, that's terrific. And again, I really appreciate you coming on the show today. We are very honored that you have been our guest here. And is there a place that people can find you if they'd like to find out more about Lillian Caldwell or your network? And you also are an endorser of Doug Collins's book and my book, which is called Truth, Lies, and Alzheimer's: Its Secret Faces.
They can reach me if they put in Lillian Caldwell and spell Caldwell with a U. Google is wonderful. Okay, you can't hide from Google. You can find me on Google, or you can find me at https:// passionateworldtalkradio.com.
Terrific. Thanks so much. This has been so wonderful. You have given us so much valuable information. Thank you so much.
Thank you for listening to Truth, Lies, and Alzheimer's. We hope you found something in today's episode that helps. We understand that caring for a loved one with dementia can be the challenge of a lifetime, but you don't have to do it alone. If you're ready for exclusive access to even more great content and resources, head on over to Facebook and join Lisa Skinner's Minding Dementia support group. We're a community of like-minded caregivers, and we're here to help.
