Ways to cope with grief and loss of a loved one from Alzheimers

Truth Lies in Alzheimer's with Lisa Skinner is a podcast that is airing on Passionate World Talk Radio Network, a subsidiary of Global Media Network LLC.

How's everybody doing today? Welcome to our show, Truth, Lies and Alzheimer's, the podcast. I'm Lisa Skinner, your host. Let's go ahead and start this conversation.

Sometimes I can hear the sound trying to make sense in my brain. Smooth melody comes to life after the rain.

Cope, don't struggle, navigate the challenges of Alzheimer's.

Is what I need to change the world. A few bunch of words in this song written for me and for you.

All the things we can do for the sake of the nature we Our goal is to get to the truth, dispel the lies and myths, and unveil its secret faces. Understand what it's truly like to live with this disease and focus on what really matters—spending quality time with your loved one. Hi, I'm Lisa Skinner.

I am so happy you pushed the play button to watch this video today. That tells me that you are more than likely looking for guidance as a memory caregiver to someone who suffers from Alzheimer's disease and dementia. Everyone has an Alzheimer's story, so let's start that conversation now. I know your pain. Not only have I had 8 of my own family members suffer from dementia, but I've been counseling families for nearly 30 years. And just like you, I've been a caregiver for family members. I know firsthand the challenges that unexpectedly show up, just like a California earthquake that shakes your very foundation. And it comes out of nowhere. For many, many years now, I've listened to the stories of people living with dementia. About aimless wandering, looking for something that doesn't exist, hallucinations, delusions, paranoia, just to mention a few of the behaviors that we see. And the worst part about this disease is that everyone is in it for the long haul. It lasts 4 years. The average is 8 to 15 years.

So let me share a little bit about me. And my skill set?

Well, I'm a behavior specialist with an expertise in living with Alzheimer's disease and dementia. My background includes being a speaker, a counselor, a support group leader, a regional director for one of the largest senior care organizations where I set up memory care wings, developed programs, and I am a certified dementia care trainer through the Alzheimer's Association. Negotiation. I also hold a degree in human behavior. I have written multiple books on the subject and now have developed a concise guide, a book and a workbook, that delivers solutions that will help you return to what really matters. And what's that? Spending quality time with your loved one.

I applaud you for having the courage to care for a person who will eventually rely on you for everything.

Many people over the years have said to me that the job would be so much easier if it only came with a manual.

Well, now it does.

With our new training workshops, we will cover many of the everyday challenges that you will encounter, which will equip you with an arsenal of tools and tips to help make your world easier to manage. Currently, there is no cure for Alzheimer's disease, a way to detect it in its early stages, yet every 66 seconds someone in the US is diagnosed with Alzheimer's disease. So follow along with me as I join you in your new reality. I know this information is not easy to find, but you have come to the right place. All you need to do now is listen, learn, and implement. Implement the techniques that I will be teaching you into your new world of memory caregiving. Please go to our website at truthliesalzheimers.com to learn more. I'm Lisa Skinner, and I am here with you on this journey.

Truth Lies in Alzheimer's: Its Secret Faces by authors Lisa Skinner and Douglas W. Collins is a concise guide for caregivers navigating the heartbreaking challenges of having a loved one diagnosed with Alzheimer's disease and other dementia. Everyone has an Alzheimer's story. It's time to start that conversation about Alzheimer's disease and stop treating it like only family business. You can find it on Amazon.com, Barnes Noble, and other fine booksellers.

Humanity witnessed thousands of diseases over the years. Cures for some, but a few devastated the world. Countless suffering and pain for the patients and families, even losing their loved ones at times. Today, our society demands more advancements in the medical sciences, a futuristic technology of bloodless surgery and ultimate method of healing the body from the root cause. And that's where Geostar steps in, safeguarding the future health with the power of regenerative medicine.

If your aim is to If your aim is to work for the betterment of the people, if you want to give life to the people, you have to burn like a sun.

Global Institute of Stem Cell Therapy and Research, known as GeoSTAR, based in San Diego, California.

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, 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 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 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. Um, 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. Two, to provide quality information and content to the listener so they can use it immediately in their business, personal, and spiritual life. Checkmark. And three, 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 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 and 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 Bronx 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. Truth lies in Alzheimer's. It's Secret Faces by authors Lisa Skinner and Douglas W. Collins is a concise guide for caregivers navigating the heartbreaking challenges of having a loved one diagnosed with Alzheimer's disease and other dementia. Everyone has an Alzheimer's story. It's time to start that conversation about Alzheimer's disease and stop treating it like it's only Family Business. You can find it on Amazon.com, Barnes Noble, and other fine booksellers.

I started doing the DM Zone because I love interviewing people, and I got the opportunity to I start visiting with authors, with corporate clients, and it helps them relax if we're just chatting. For sure. And so that's where the DM Zone created its beginning. Then I got to go to Country Thunder and all the fun stuff. And then Hollywood— our Hollywood producers said, "Oh, gee, you do interviews?" "Yeah." "Well, come on over." And I got to do red carpets, and I just— I've had a blast doing it. So about For the last 15 years, I have been doing the DM Zone.

I love it, and it's fun to interview people because you get to get— not only get to know them, but know what makes them tick and know what makes them be proud of who they are and what they have going on and all these different things happening. But it's great. I'm very excited to watch your show and everything like that.

I love it. Arnold Schwarzenegger supported the use of stem cells for medical treatment as one of his main election agenda items. Credit goes to a handful of people like USA's First Lady Nancy Reagan, the authority in the field of stem cell science and chairman of GeoStar, Dr. Anand Srivastava, Michael J. Fox, Christopher Reeve, and a few researchers who fought against the entire establishment to make this unexplored yet powerful medical science to see the daylight. The way you—

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 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—

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—

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 and paradigm shift. I have one more question for you, Lillian, 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? Um, 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 to not—

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.

I—

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.

Com. Terrific. Thanks so much. This has been so wonderful. You have given us so much valuable information. Thank you so much for being here today.

Thank you very much for having me.

You have to have someone you can you can talk to about this without feeling like you're judged. When you live with an Alzheimer's patient or you live with someone who's suffering dementia, whether it's in your home or whether it's in a care facility somewhere else, it's the elephant in the room. It's always right in your face. You're never very far away from it.

Everybody truly does have an Alzheimer's story. People are just now starting to come out of the woodwork and be willing to talk about it. Before, they wouldn't even talk about it because of stigmas and being afraid of judgments and being afraid to admit that they have this situation going on. We really need to raise this awareness because we are on the verge of the next global crisis.

In my brain. Smooth melody comes to life after the rain. Small piece of paper and love is what I need to change the world. A few bunch of words in this song written for me and for you.