Carmen found her second calling in life documents the stories of families and people with dementia. Having worked40 years as a nurse, she met a couple the wife had dementia. She saw their struggle and realized how important it was to share their stories and other families like them dealing with dementia. So she documented their lives in photos, wrote a book, and started a non-profit to document and help those with dementia. Carmen faced her struggle with the disease when she was diagnosed with cancer in 2020, and she realized how isolated patients with dementia were. So she started a Youtube channel and podcast to document their stories and help them feel less alone. She reminds us to always find joy in life and hold on to that.Carlos Acosta is a father, husband, and successful business owner but life wasn’t always perfect for him. He has overcome many bricks including a divorce and a car crash that almost left him dead. He healed from his injuries with the help of his family. From that moment on his life changed he no longer takes one moment for granted. He knows that your life can change in an instant. He hosts a podcast focused on seizing the day. He reminds us to take nothing in life for granted.
Ari: My guest today is carrying the valence. Very interesting individual. She’s a mixed media visual artist, inspiring audiences around the world with humor and a compassionate way of telling stories with images. During her 40 year nursing career, she worked with 1000s of people seeking meaning and connection during challenging times, and continues to do so with her camera. She’s an international speaker inspiring audiences using photography and storytelling, and as an award winning author of just see me just see me. hyphens sacred stories from the other side of dementia. Coma is also an Alzheimer’s slash dementia advocate and founder of doggies for dementia Foundation, a 501 c three nonprofit corporation, using photography to capture family memories and raise awareness for Alzheimer’s disease and related dementia. Doggies for dementia has been featured on both NBC and ABC. Please help me welcome Carmine de Vacas. Carmine, how are you? Good. All right. Welcome to whispers in bricks. Have you been?
Carmen: Great, great. Thank you. It’s carmine. By the way car, man.
Ari: What did I say? Car mine mine? Oh, yeah, I apologize. I did have I did have a very good friend whose name was Carmine. So I apologize for that. But Carmen like Carmen Sandiego, I guess right?
Carmen: That’s right.
Ari: Yeah. Okay. You can tell I have kids?
Carmen: That’s a good question. Where’s Carmen?
Ari: Yeah. Where in the World is Carmen Sandiego. So as you know, the name of the podcast is whispers and bricks. And the whispers are those voices telling you what the right thing to do in life is, and they represent the good in life. And the bricks represent the bad things that we go through in life. And let’s be real, everybody has a brick thrown at them once in a while. Some more, some less, some bigger, some smaller. But we all go through things. All right. And the interesting thing is that very often, we think to ourselves that when we’re going through something that that we’re the only ones going through that situation. And that’s why I started this podcast, in the first place to let people know that they’re not the only ones going through and there are others going through and there are others who have succeeded in breaking through. Now, you had an interesting life. You were a nurse practitioner, right? Yeah. But But I think your life changed when you met a couple who came into the clinic. when the wife at a young age had dementia?
Yes, yes, correct.
Ari: Can you can you tell
us about that? Tell us what was going on. Tell us about that.
Carmen: Yeah, that was rather a magical day. For me. I’ll just say that. So yeah, 40 years as a nurse, and so I’m getting kind of close to 60. At the time this happen. And I was working in a clinic neurology, which is for specialty in dementia, Alzheimer’s, and a couple came in, they had scheduled kind of last minute it was a husband and wife and the wife had early onset Alzheimer’s disease, meaning that her stage was early. However, she was young, she was in her late 50s, I believe. So the onset for her was younger than most I mean, we think of Alzheimer’s disease affecting mostly the elderly. But there are many people that who are in their 40s 50s and even early 60s, and, and so I wasn’t sure why they had come back in and when I entered the room, they were crying really hard. And I just thought all the things that go through my mind what, what could this be? And they totally took me by surprise. Because what they had said was first they prefaced it with I know you’re not going to do this. I know you’re not going to do this because it’s too early. But the the woman with Alzheimer’s said I want to interview hospice so that when it comes to that time for me, which mind you could be yours I had, but when it comes for that time for me, I don’t want my husband to have to do this by himself. And I know I’m not going to be able to help him. And it struck me as one of perhaps the most beautiful displays of love and compassion as they’re both hugging each other and crying and dreading this horrible day that she might need hospice care or send actually running toward the end of her life. But she wanted to ease his burden and ease his pain, knowing she will be there physically, but not be there emotionally to help him with that. And it was an epiphany for me, because I had been thinking all along and meeting with families and I was very fortunate and that the group I worked for just kind of gave me if you need 30 minutes, if you need 45 minutes, whatever you need to talk to the families to support them, go ahead, which is like crazy is like unheard of in the medical field, right for nurse practitioner, and we didn’t have a lot of medicines to offer or hope of a cure. But we had our presence, and they allowed me to, to use that to the, to the best of my ability. And, and I just kept thinking somebody needs to tell these stories, somebody needs to tell these stories. And this day, and that couple, it just hit me like you, you need to tell these stories. They’re not capable right now. But others need to hear
this.
Ari: And so you decided to step up to the plate and say, You know what, somebody’s got to write it. And I don’t see anybody around you that will so I guess I’m gonna do it now. So, but it was like, it wasn’t right away about writing the stories it was first you started photographing people, is that not the case? Which actually, which actually, in turn led you to write a book?
Carmen: Yeah, kind of my first thought was, I need to tell the stories, I need to write this book. And I am not a writer or an author, I’d written a few professional papers, but in no way knew about writing a book. But I had this, this feeling so strong, the drawing the compelling need to do it. But I couldn’t imagine doing it without the photos. And I was an amateur photographer for sure. I’d never even taken a class, the somehow like I thought I could write a book. I thought, yeah, I could do these portraits, too. And it just has to happen. We have to tell us, we have to tell the full story and show the images. And of course, there’s this time of one’s life when they have Alzheimer’s disease in the family. That’s not the first thing they think of, hey, let’s document this. And photos, you know, and, and so I knew it was kind of a an out of the box thought. At the same time, it was this calling for me that I just could not I could not ignore
Ari: And that ultimately led to as we as I read from your bio, doggies, what was it called?
Carmen: Yeah, dogs for dementia. Yeah, so just see me the book. So I followed about 13 families for about ended up being about two and a half years, almost three is my naive self thinking, I could write a book that six months, this will be done, this would be great. And of course, it took a lot longer, which was a blessing Are you because I got to know the families I met with much better he’s I read be there for birthdays, and I would be invited for holidays and for special things. And a lot changed during those two and a half years, which made the stories even even more beautiful and more full. And I said, you know, like, I would like to post these pictures and tell the stories on social media, let’s raise awareness. Because one of the common, one of the few common themes of the stories were the isolation and the loneliness, people felt and abandoned that by other family and friends and just felt like people did not understand them and what they were what they were going through. I’m like, hey, well, let’s share these stories. Let’s let’s talk about it. And so I started posting it on social media to raise awareness and into actually was a way of honoring their them and their stories, and the photos. And what I found was the photos that included the family dogs, which I was always happy to do. I’m a fan. I’m a dog lover. They were more candid and more. They were more fun and it showed more personality. And those were the most popular ones. And popularity equated to people actually reading the stories and falling in love with the families the way I did. And having that those feelings of compassion and awe for their challenges and their triumphs and that so doggies for dementia I said well what do we do then for to meet people is to include dogs.
Ari: Well, now when when did this? When did doggies for dementia actually start?
Carmen: Well, I started it. So as I wait, I kind of retired from the nurse practitioner world love photography. During this time, I got, you know, I love photography. And I love photographing and telling the stories through the images. And I essentially retired from my career, and started doing portrait photography, so photographing over a variety of situations and people and just practiced and practiced and learn and took classes. And I’m pretty sure I can have a master’s in employment now after how much work and in time and an effort but I loved I loved it so much. And so my business, Carmen’s legacy productions, I photograph the families with Alzheimer’s and, and those to telling their stories, but I did not charge them for that. That was a piece I gave to them. And then eventually, people were saying, you know, Carmen, that sounds and looks like, like a nonprofit, you probably need to separate that and make it a nonprofit, so that you can do more with it, versus being a part of your for profit business that you’re not charging for. And so that was officially, officially was March of 2020. Which, of course, we all know what happened then. But I’d been doing it for a couple years by then.
Ari: Okay, so and that that leads to my next question, because I wanted to ask you the reason I asked you when did it start was because obviously, we did go into COVID. And my question is basically, how did it affect you? How did it affect your clients? And how did it affect your business? Yeah.
Carmen: Oh, boy. So what a loaded question, Ari, thank you for that. Yeah. So I’ll you asked me first, how did it affect me, being I photograph people and I’m with with, with people, and also are very vulnerable. people with Alzheimer’s and the elderly, I really couldn’t do my, my business in that sense. at all, I was out there photographing what was happening. But as part of that storytelling, but it’s not an income earning. And, and also during that time, in fact, a year ago, at the time, around this time that we’re talking today, I was diagnosed with cancer during this pandemic time. And so I couldn’t be around my friends and family. And I lived alone at the time. And I had a real I thought I understood things pretty well what it was like to feel isolated and lonely, and people don’t understand. But certainly during that time, I got a really good firsthand view of that, and and also being hospitalized without any visitors allowed. And everybody’s wearing a mask and, and I’m being told I have cancer. So that was a rough time, which I’ve recovered from completely. So I’m really grateful for that.
Ari: So that was that was quite a brick that you basically got hit with. Yeah, no, no, it’s bad enough that you can track the cancer. But to do it during during the COVID pandemic, where you know, you’re literally all alone. But it did help you. Okay, you did hear some of the whispers, because you started to understand what others were going through. Now there’s it’s one thing to see it, it’s one thing to be in it. And you saw it initially, but then you’re actually in it. And I’m sure it just changed your whole we must have changed your whole perspective on this, correct?
Carmen: Yeah, it did. And I you know, an effort before surgery and treatment and all I needed to go through all these screening tests. And screening tests themselves aren’t a big deal, right? But they’re scary, wondering, what’s it going to show? And, and I remember laying there and they’re going to do this cat scan and the gals are putting in the IV and they’re talking and they said so. So this is you’re having some pain or something like that. And I said, No, I have. I have uterine cancer. And they literally took a step back. And all the chatting that had happened before. And the small talk, it was just silence. And I do I cannot read their minds. I don’t know if they were feeling like oh, I should have read that or we should have known or what the thought was but that feeling when when those with Alzheimer’s would say as soon as I tell them Buddy, and families are like, they literally will back away. They did literally take a step back if the same thing happened to me. And, and the feeling that I had at that moment. I mean, tears are just coming down my eyes, not just because of what was happening, and I was alone, but because of the response. And I’m sure they were doing the best they could. And it was their response didn’t realize it. But it was, it was profound to me. I mean, it’s two years to the around this time, and around this time of year I start, it’s like, it kind of comes back to me what that was really like, which is not a totally bad thing, because it reminds me of just how, you know, blessed is used a lot, but just how, how grateful and blessed I feel to have people around and to be healthy. And that that was a one kind of a one time situation for me, which is which is different than for people with dementia, you know, it goes on.
Ari: Right? Yeah, but But it’s, you know, and your reactions around you and the anniversary of whatever, you know, whatever you’re going through, you’re no different than I think most people who have gone through something, I mean, I I get I get a little depressed sometimes around 911 I get you know, a little antsy I get, you know, I you know, I want to, you know, just stay to myself sometimes just go away and just walk by myself. So we all have a way of coping with the anniversaries. All right, but as long as we don’t let it, you know, destroy us, you know, but let us let him help us, you know, it helps to make us stronger. All right. And that is that’s what’s that’s the key. That’s what’s so important. But let me ask you this. At any point in time, in during your career, or whatever, did you ever reach a point so low, where you said to yourself, you know what, I give up, I can’t do this anymore. It’s just, I can’t for whatever reason, you know, I just want to curl up into a ball and die. But if you and if you did reach a point that low, obviously you’ve come out of it, you’ve come back, you’ve made a great comeback, and how did you do that?
Carmen: Well, I’ll talk about my second career then the photography and and an author and such with donkeys. So during the time of this, of COVID time, and not being able to photograph the families, like we have set out to do, like our mission is the other piece, I really felt like, oh, how are we going to do this? How are we going to do this, and we’re a nonprofit. So we rely on donations and, and sponsorships and things when we’re not able to do the work that we set out to do. And I thought well, I really kind of went back to what we were talking about the feelings of that isolation and loneliness. And I did a I did a Facebook, I did just kind of I did a search about isolation. And some there’s caregivers for compromise. There was a group that were primarily but not only but but many families whose loved ones had dementia and were in in they were all in some kind of a long term care where they were locked out and not able to visit not able to see their loved ones. And the more I read the more I heard their stories of they’re watching their loved ones decline where they don’t recognize them anymore. And they can see them through the windows and there are there are wondering with good reason is the is there protect protection, meaning locking the doors and not letting people in worth the results, which is people declining rapidly and not knowing their families and feeling like like, what? And they look through the window go What did I do wrong? Why am I in jail? Why don’t you come see me and heartbreaking and they they couldn’t come in they couldn’t hug them. They couldn’t see them and some wrote how they were invited in to see their loved one only in the like the last hour of their lives when they felt like it was one hour. And it flabbergasted me. I mean, I knew times were tough, but I didn’t ever think about it from that perspective. And so I started reaching out. I said, I’d love to tell your story. Tell me your story. And let’s part of raising awareness because this is a current event in our in our country. And while I can’t photograph your loved one, I can tell your story. And so we built a YouTube channel and end up in a podcast sharing Stories of areas called experts dig in with donkeys for dementia. And those are the family experts stories. What does that like? And then I did I talked to professional caregivers and, and, and psychologists and we were in a crisis here. We haven’t been in a situation like this before. We don’t know what’s the best thing. But we’re watching people die in front of us of what, what else can be done. And that was our raising awareness, which really helped mold our mission even stronger. And we adapted, we adapted till we could get out again.
Ari: Yeah, so let me ask you this, who is the one person that you can point to? That you would say had the most influence on your life? And why?
Carmen: Yeah, you know, I, I know, you say one person, I think about the, I’m gonna if I lump it into the families that I’ve worked with the, I mean, it seems almost like a luxury type thing. You have a photo shoot, you get some video of your loved one talking and conversing with you. And, and then you get these prints and, and then they’re honored. And and, you know, it it. And I thought that’s really a beautiful thing. Until I attended a few memorials and funerals. And I was there and people would know who I was, before I even opened my mouth, people I’d never met, because it was that profound and that important to them. And it is something that they would keep forever. And when I’m having hard days, you’re at my desk by myself in my sweats and for any day out, thinking, When am I going to do? How are we going to do this? I think about them. And I think about how important important isn’t even the word is so much more than that profound for them. And they describe it as you know, this, you know, a precious gift and priceless to them. And that is at the most influence because it keeps me going in spite of the challenges of a new nonprofit. Which are there over there?
Ari: Absolutely. Absolutely. Let me ask you something. Are you married?
Carmen: I am I am now I’ve been married almost a year, a year in May.
Ari: Oh,wow. Yes. First Time?
Carmen: No, no, not the first time. Okay. Yeah. But he he was not I met him shortly after my cancer experience. I call it that it was two or three months after? Yeah.
Ari: Do you have any kids? Yeah,
Carmen: I have one son who is 35. Now. And interestingly, you know, you talk about 911 and things. And he was, I think 11 or 12. And that happened. And it you know, that’s a very vulnerable age as well. And he, from then on, said, I’m going to be in the army. And I know he wanted to do his part. And I just kept thinking maybe he’ll grow out of it. Because I was a single mom, and he was my whole life. And, but he didn’t. And he took you took his experience. And he was badly injured in war. And he took his experience and as a singer songwriter, because he found music healing. And his first many of his first songs were about that experiment about the connection he felt with his army buddies and things and, and then when he threw in what it must have been like for mom, so that was really good to hear. Because it was pretty horrible. Yeah,
Ari: wow. Yeah. So is he okay, today?
Carmen: Yes, he has, you know, he had injury. Yeah, some issues, but he’s doing really well.
Ari: That’s wonderful. That’s wonderful. And he’s put it to music. You know, music is such a soothing thing.
Carmen: And, you know, I have to say one of the things I learned, I mean, 40 years in the clinical world, and I loved what I did, but I never felt like it was it was going to be it for me. I always knew there was something else but I didn’t know what it was. And I raised him I said look at that, you know, you might be outside the box which you end up doing and but be open. I’m you just never know if your kids are listening, you know, here you are true. When he started talking about it, and he didn’t even learn to play guitar Delete. He was in Iraq. I mean, when his sergeant I think taught him and and so when he started talking about it, I think it’s a food Danger Danger, but at the same time I’m like, you know, you got to follow your heart and and take those risks and and do that, because I think they’re your biggest regrets are the things you don’t do? Not the things you do.
Ari: Yeah, absolutely. So before we go, are there any words of wisdom that you would like to share with my audience something a takeaway for my audience?
Carmen: Yeah, I think we’ve, you know, we’ve touched on it already. We talked about going through the hard times, and then coming out of it, that life is kind of this up or down rocky road, if you will. And I think sometimes we have a tendency as humans, that when it is good, that we don’t enjoy it fully. And we’re not finding the joy in it, because we’re still worried about well, what if, what if, or this could happen, or that could happen? And I knew, like, you know, I’ve heard that new moms worry so much about their newborns that they forget to enjoy the time that they’re worried about it. And I think we we perpetuate that in a lot of different ways. And, and I would say, I mean, just find the joy. And and just, you know, you may have to walk through the dark of the night at times, but find the joy and and focus on that to not just the Dark Knight focus on that joy. Also. I certainly learned that and working with the families with donkeys for dementia, we find the joy.
Ari: That’s awesome. Now, we did mention that you did write a book. Can you tell us a little bit about the book itself? Like what’s the name of it? Where can people buy it?
Carmen: Yes, yes, sure. It’s called just see me sacred stories from the other side of dementia or just see me and it’s available on Amazon. I believe it’s on Barnes and Nobles as well. And anyone who reaches out to me and said, I’d like to have one this autographed. I take care of that too. Because I know that’s kind of a special thing. And I’ve dedicated I’ve written and dedicated to various family members and mail them and I love doing that. So they could just reach out to me so my email is Carmen car and E N doggies. De og de ie s for dementia.
Dot orc. Is that for the number four or f o r? Yeah. So
dog is de OGIESFO are dementia.
Okay, so dog is for dementia.com
Okay, all right. If you go to the website, and you say contact, I’m the one who gets that. And the website is for dementia.org.
Ari: Okay, awesome. Great. So now if people want to get in touch with you, we know that they can do that we know that they can get the book. Well, Carmen, thank you so much for coming on the show. You’ve been a tremendous inspiration to me, and I’m sure it’s my audience. Thank you so much for sharing your story. You got a lot of heart. You’re very courageous woman going through what you went through and just not giving up. I think it’s absolutely amazing. So, thanks so much. Keep doing what you’re doing. You’re doing great work, the world needs more Carmen’s. That’s for sure. And again, thanks so much for coming on the show.
Thank you. My pleasure.
You’re listening to whispers in bricks and I’m your host Ari Schonbrun. Remember, if you feel like you’re stuck in the mud, like you’re spinning your wheels, wasting time, your career, your business your life. If you know you’re not enjoying all the success, satisfaction and significance that you desire. And it’s time for you to book a call with me@ www.whispersandbricks.com
