#419 Gary Barg of Today's Caregiver Shares His New Book and a Message of Community to Family Caregivers

Welcome back to Hope for the Caregiver.

I am Peter Rosenberger. As always, John Butler, the Count of Mighty Disco is with us. John, bringing back today some of our favorite guests we had when we first started the show. We of course had Matt Gurwell, but today, this part of the show, we have Gary Barke, who is the founder of Today's Caregivers, a wonderful magazine in the Fearless Caregiver Conferences that he's been doing for, I don't know how long he's been doing these for, for decades, I think, and been around doing this and leading the charge to, to strengthen family caregivers.

We, we connected back up this week. He's got a new book out that we're going to talk about, but I just wanted to have him back on the show. He's one of an inspiring individual to me personally. And so, Gary, you with us? I am. I'm just going to listen.

That sounds great. I wonder who this guy is you're talking about. Well, that's, that's what it says on the paper you gave me here, Gary. Yeah, yeah, I wrote it.

So you read it really well. Thank you. Welcome back to the show. It's been way too long, and we're glad that you're with us today. How are you feeling, by the way? I am, I am fine. I'm, you know, the, the, we had to postpone, I'm going to call it postpone six or seven conferences.

So rather than being in airplanes and, you know, having a, you know, fast food and, and motels and, which is the downside, the upside is, I just, I just, you know, shake when I can't be in a room with family caregivers, and that's six or seven family caregivers, three, 400 caregivers that I, that I should be hugging and interacting and educating and learning from. So it'll come back. It will. I know you miss it. I know you miss it because I've watched you do these things. And it's like you just, it's feeding your soul as you do it. And I've seen it and it's, it's really a beautiful thing to watch and how you're able to pull people in and into this wonderful community that you continue to foster. And a lot of tears, a lot of laughter, and a lot of hugs. And we need that as caregivers, don't we?

Oh, absolutely. And I learned so much from every, you know, we have experts. We have, you know, doctors, lawyers, everything you can think of on the panel that we put in front of the caregivers. But I always know that the lessons I'm going to learn from that day are from the family caregivers who raise their hand and say, you know, here's how I solved that.

Here's what I did. Here's how I got dad to, you know, think about stopping driving here. By the way, I'm honored to be on the show with Matt.

I've been such a fan of his for so long. And we've interviewed him and, you know, driving is, I call driving is the showstopper at our conferences. So when I, we have an open Q&A forum at the beginning, when the driving questions come up, I ask for it to be held till the end of the session, because it'll swamp everything else. It breaks families apart. I mean, it does. It's a tough issue. And, you know, he is just such a wonderful person to be speaking into that.

So, you know, he's earned the respect of everyone that he encounters and it's extraordinary. Well, tell us, are you right now, you can't do these conferences and you, you, you and I talked about this early this week. I won't, I won't say we rehearsed because we never rehearsed anything for this show. We can't be good enough for people who actually rehearse. So that would be embarrassing to say.

I don't think anybody's ever going to accuse us of rehearsing. But it's, you, but you and I did talk a little bit this week about your concern of what the isolation is doing to the family caregiver. And isolation is, is one of those, I wrote about it in my book, Seven Caregiver Landmines.

It's just, it's one of those landmines. We, we become isolated physically and then, then also become isolated emotionally. And, and so you decided you were going to tackle that and, and talk about this. Sure. Isolation is a killer. I've seen it, you know, I felt it as a serial caregiver. You almost said serial killer. Oh, I gave myself away.

This isn't CSI. All right. Well, they're at the door now, so I got to go. But isolation, of course, getting, getting back on track, bring us back, bring us back, save us, John.

Captain John. But isolation is the killer. You know, basically you become a caregiver. You get that metaphorical phone call middle night, dad fell.

There's been a accident. The test has come back and you've now walked through the looking glass of being a family caregiver and you're talking about things and talking to people and learning things that you never thought you would or should or ever wanted to. And you've become the CEO of caring for your loved one, Inc. But it's also very isolating in, let's say BC, uh, before COVID and AC after COVID, you know, when we get back together, I, the, the, the key for me is to hopefully have caregivers learn from one another. Cause that's where the sweet spot is when, when you're sitting in a pharmacy, standing a pharmacy waiting line or sitting in a, you know, emergency room at four o'clock in the morning and there's another caregiver there. I always say actually as opposed to, you know, not wanting to bother the person there who's dealing with their own family issues. That's an opportunity to learn from an expert because every single caregiver is an expert in caring for their loved one. And there's so many pieces of puzzle that they figured out that other caregivers that they see at events or the, you know, that the waiting lines, if they don't interact and talk with other, with each other, they don't realize that person standing next to them has a piece of the puzzle that they've been trying to figure out for weeks or months or years. So the beating isolation is, you know, a twofold.

One, you need it. You have to get out. You have to make sure, well, you know, even your radio shows, you know, your Facebook show, this beats isolation. And however we can, whatever we can do these days to help caregivers beat isolation and help them feel like they're not alone, 66.7 million people caring in the country now, we all feel absolutely alone, it's incumbent on us to do in whatever way we can until we can all get back together in the same room. You know, you and I are, we, we share common experiences. We, we were kind of old war horses at caregiving, you know, I'm not saying we're old, but we are not old, but we've been doing this a while. John and I've been doing this.

I mean, you and I have been doing this a while and I think that, um, tell me about this. You would, you still get surprised. I do, I do too, about things that we learn, even though we're not novices at this. And, and I, I have, I have run the gamut of a lot of things that the callers that call into my show don't have the same shared experiences and some of them have a fraction of the, the years that I've, I've logged into this, but I still get surprised by that.

You do too as well. Talk a little bit about that because they, they surprise me with wisdom that I didn't expect because I think, well, you know, I've been doing this so long and you're an old hand at it, but then every so then all of a sudden something happens and you get surprised by somebody's wisdom that's been doing it for maybe a fraction of the time. And you get surprised that a caregiver raises their hand shyly at an event saying, well, this may not mean anything. And then they have the key to the puzzle that hundreds of caregivers have tried to figure out in these rooms, you know, like getting, uh, of course dad stopped driving, getting mom to accept, uh, home care, you know, uh, getting your family members to help.

I mean, that's a big one, uh, getting your loved ones to, you know, accept the doctor's, uh, solutions. And so that's the part I'm so glad you brought that up because that's the part of the fearless caregiver conferences that I love the most is the wisdom, the pieces of the puzzle, the shared emotions, the fact that caregivers want to give so much to each other that we've actually should have done this years ago, but you know, we were running around doing it live. Um, we wrote a book called you are not alone. And it's based on the wisdom, the pieces of the puzzle, the, the solutions that we have heard in these 287 rooms around the country with about 120,000 total family caregivers, not in the same room, but, um, you know, where they raised their hand and they answer a question of another caregiver and the panel of doctors and lawyers and everybody are making notes.

They've never heard such brilliance. So we, we have a 200 plus, uh, page book that just came out called, uh, you are not alone. Um, you know, lessons, uh, learned from hundreds of caregivers, uh, while, you know, that we can, we can apply while sheltering in place.

And so I call it the conference in the kitchen. I mean, you can sit at your kitchen table, read this book and hopefully find those pieces of wisdom, those solutions, the comradery that, that we see at every one of the fearless caregiver conferences within the pages. And we're, we're really, really pleased the, the aging network and, and so the disease specific networks have really picked up on it. Family caregivers are ordering it and you know, it, it extends our ability to keep people together.

Somebody said something in a room in a state that the caregiver reading this book will never go to city, they'll never go to a person they'll never meet. And it solved the problem that they were dealing with. Um, in, in something that we learned because we happened to be there when the caregiver was sharing wisdom.

So we're really thrilled about it. Well, they can get it on caregiver.com. Um, they could, if you don't mind, give me, me, give me a phone number.

They can call up, give out anything you want. 954-362-8125 or go on caregiver.com and, and get the book. And, and again, it's, it's just about bringing, I know I'm, I call myself a Johnny Appleseed of caregiver wisdom.

I don't, you know, I learned what I learned from family caregivers and I call myself the Wile E. Coyote of caregivers. I'm not touching it. I'm not touching it. Forget it. I just keep running into it.

I just keep running into brick walls or off cliffs. Johnny Appleseed, I hold up a sign that says help while I'm treading air. Um, no, I, I, when you're around family caregivers, you get help. Yeah, you do.

You really do. I want to ask, I will just put you on the spot. If you need to take a moment to think about it, it's okay.

John will sing a song or something. Oh yeah. I try not to think too much before I answer questions.

So don't worry about it. I want you to identify one of the more poignant moments in your conferences or in the book or whatever that brought tears to your eyes. And then I want you to identify one of the most hilarious moments that did that for you. Can you do that for us just off the spot like that on the spot? Real quick. I, I'll, you know, take your time. I just want you to be able to do it right as they, as they teach you when you do these shows, never answer the question you're asked.

So I will answer it in a different way. The most poignant, important piece of advice we got from a family caregiver was probably 15 years ago at a conference in New Haven. We've done that every single year for the last 17, 18 years with the Southwestern Connecticut Area Agency on Aging. Dr. Bev Kidder, wonderful folks.

And South Central Connecticut, I'm sorry. And there was a caregiver who stood up. It was at the end of the event and she stood up and she said, look, I don't have a question.

I just want to tell you something I did and maybe it'll help a few people. So my mom is always challenged about having home care in the house. She lives with me.

I got to go to work and I'm afraid of living her alone because she has mid-stage out summers. So I thought for myself, let me go where she is, you know, Naomi Files, validation theory, but you know, basically validate what her mom was complaining about, her life, her mom was living as opposed to saying, mom, you need to do this. So her mom was a bank branch president, very professional, still gets dressed up every day. And this caregiver came home from work one day, was still in her dress clothes, sat down and she said, mom, you're too busy. There's too much paperwork.

You've got too much on your plate. I'm going to hire you an administrative assistant, using her mom's language, not an aid, not a CNA, you know, an administrative assistant. And her mom still thinking she was a bank, you know, president.

Yeah, that'll be nice, honey. The next day she, the caregiver comes in, sits down and says, mom, how'd it go with your new administrative assistant. And they, and, and her mom looked at her and she said, yes, she was very good. I liked her very much. She was very smart and very helpful, but maybe next time she comes, she could take me for ice cream. Oh, that's good.

Think about all the drama that that saved just by doing that. Her mom owned it and she owned it. And I just thought, and that's in the book and, and all these, these pieces of wisdom that I've, you know, as long as I can remember them, I'm going to write them down and share and share them out.

And she was wonderful. Yeah. I would never have thought of it. I didn't think about it that the experts I talked to didn't think about it. Everybody has the same response you do. You know, I've gone to school, I have a doctor, I have PhD all these years. I never would have come up with that. Absolutely.

Cause you're not living it like the family caregivers are. Well, and there's an old saying says the obvious becomes obvious right before it becomes obvious. Obviously. Let me ask you this one and then I want to do something different with you, but what's, what's something that stuck out that was hilarious. I mean, they just got level laughing that you had during these conferences or the book or just as your, as your journey with caregivers.

I'm going to try to keep this short. This is in the book too, but we were in Wisconsin hosting an event and a social worker stood up and she said, you know, when I was training for social work, uh, I guess it was in the seventies at that point she was training. They, they believed in reality theory, you know, trying to force a person into thinking it's, you know, knowing what day it is, knowing what time it is. And there was always this, she was doing her practicum in a nursing home and there was this, uh, older lady standing in the corner talking for last 10 years to her husband, Harry. Frankly, the only challenge was Harriet died 10 years ago. So her, her, uh, proctor teachers said, I want you to go over and tell Mrs. Johnson that Harry's dead.

It's really 1979 and she needs to snap out on it, of it. And this, this wonderful, wonderful lady said, didn't think that sounded right, but that's all they knew at that point. They hadn't come up with validation theory.

They haven't come up with anything. So she went over, tapped Mrs. Johnson on the shoulder who looked at her very clear eyed and she said, Mrs. Johnson, I'm so sorry to tell you, I know you think you're talking to your husband, Harry, but he died. He died. He's dead.

He's not here anymore. And she looked at the lady and the social worker, she nodded. She turned back to where Harry wasn't. She said, did you hear that Harry?

She says you're dead. You can't make that up. You let that go. Uh, Ed, but I don't have anything on the screen here. I think Ed's working on that. Sorry about that for Gary.

It's caregiver.com. Well, I think that is a, that, sorry about that. Uh, I didn't, I was trying to watch the board and do all this and well, Peter, I hate to tell you, but, but Ed's been dead for like five years now. You hear that Ed?

They said you're dead. All right. So the book is called, you are not alone. You are not alone.

The website is, you are not alone because basically what else would you call a book like that? Because we're really trying to help people realize even if you're alone, even if you're in the room with just your loved one, even if you're sheltering in place, your loved ones in the facility, we are here, we are out here and we've been here, your fellow family caregivers, and we're, we're going to be here when this is all over. If you don't mind, there's one more thing we're doing now. We're doing a phone back to my roots as a video producer. Uh, we're doing a series called COVID-19 Caregiving Conversations with experts and industry leaders. Um, we've interviewed Assistant Secretary of Aging for Aging, Lance Robertson. We're interviewing, um, interviewed Jennifer Olson, Roseann Carter Institute's executive director, uh, Grace Whiting, National Alliance for Caregiving, and experts about home safety, you know, about, um, telehealth. And then again, tips, because we don't videotape all the conferences, tips that we've picked up from family caregivers and, and we call it, uh, clips and tips, maybe some funny moments from caregivers and fearless caregiver moments.

So that's, that's the first one came out last week. And, uh, again, it's just a way to touch and be involved and be connected to, to caregivers, um, in a time when we can't actually go and physically do that. Well, you've got a lot of, of fans around the country.

I'm one of them and, and have been for some time. And I think that what you do is, is, is so important. And I'm, I know that you're frustrated because of the virus. And, uh, I know that must be very heart-riching because you do, you do, it's just soul enriching to go to one of your conferences. And I hope that you can get these back going again. We're going to, you know, of course, this is the podcast. We'll have this out, uh, available for folks to listen to, but all these people who know you and have watched your, your just selfless passion to, to reach out to them and grab as many by the lapel as you can just talk to them for a moment. Uh, because I, uh, I know you miss that interaction, but just tell them, just, just speak your heart to them. Thank you for that.

You are not alone. We have not forgotten you. We're, you know, obviously, you know, Peter and Gracie and John and Ed are there.

Um, obviously Matt is doing wonderful work. I really do want to talk to him about all these people who are now on the road again after not driving for three months. It'd be nice if they remembered how to drive before they started driving again. Don't worry about it. Their batteries died in the driveway before they got out there.

You could only leave a left blinker on for so long. You're not alone. And we do care and we do love you. And you know, as we do weekly newsletters, caregiver.com and we have the magazine and, and we're reaching out, of course, through the book, share wisdom from family caregivers, but our hearts are with you. And if you're in a rural community, if you're in an urban community, um, if you're starting to get out again, we, you know, we know, we know as family caregivers, um, that it just hang on, reach out, watch, you know, watch the Peter show, come to our website, go to Facebook groups and stay involved. Please don't, don't isolate as much as you can possibly not isolate. Please don't isolate. And we love you madly.

Well said, well said. Well, this is a Gary Barge. Uh, he's a founder of today's caregiver, editor in chief of today's caregiver at caregiver.com is new book is you aren't, you really aren't alone. And, and, and I think that's what the, the harshness of being a caregiver is that it, it's, it creates this bubble of saying that you're alone, that making you feel like you're, but you're not, there are people that truly get your journey and they are willing to extend the hand of experience because here's the secret that a lot of people don't know. Gary backed me up.

If I got this wrong, correct me if I got it right, back me up. But here's the secret. The more we reach out to others who are struggling as caregivers and offer the same experience that someone has done for us, we get stronger doing it. We don't, it's not depleting us to point others to safety.

It's not depleting us to speak into other's heartache. It's actually, it's strengthening us to do this. And that's why we do it because we, somebody has done this for us. It's, it's, it's reciprocal and it's, and it's contagious because we want to be able to build each other up and I'm going to need Gary and, and, and this audience to say the same things to me that I offer.

We, we, we don't need a lot of instruction, but we do need a lot of reminders and, and that's what this whole point, that's what this whole thing is about. So, so thank you so very much for this, Gary, for taking the time to call in today. Thank you for being there and thank you for all you do. And in a nutshell, giving is getting, you know, basically the more you give as a family caregiver, the more you learn, the stronger you are and the better you are for yourself, for your loved one and for your community.

Well, it really is. Thank you very much. Gary bard, caregiver.com. Go get the book caregiver.com.

You should be able to remember that website caregiver.com and it's Gary bard. And I appreciate you very, very much, Gary, for taking the time on the show. Listen, we're about out of time, John, as always, I thank you for being a part of what we're doing and, and it's on the rails and just try to remember where the conversation was, man. That's all our, our, our podcast is free.

Take advantage of it. Go out and see all the things we have at hopeforthecaregiver.com. We are serious about investing in you as a caregiver to help you stay strong and healthy as you take care of someone who is not, you know, healthy caregivers make better caregivers. Okay.

Actually, it's just that simple. Hopeforthecaregiver.com. And if you want to be a part of supporting what we're doing, you can go do that as well out at hopeforthecaregiver.com. And you'll see a place right there where you can give to this organization. We'd welcome the help. We'll see you next week. Thanks so much for joining us, John. Thank you. Back at you, Peter. Hey, this is Larry, the Cable Guy. You are listening to Hope for the Caregivers with Peter Rosenberg. And if you're not listening to it, you're a communist. Get it on.