The Other Side of Dementia (with transcript)

The Other Side of Dementia (with transcript)

Carmen Davailus Buck creates magic with images helping us stand out in the world. She left her career as a nurse practitioner to document the lives of families impacted by dementia and authored Just See Me-Sacred Stories from the Other Side of Dementia. She is a consultant and photographer for businesses and individuals who want to leave a remarkable legacy. She uses photography as an Alzheimer's Advocate knowing less fear = more love, compassion and kindness.



Frank Samson:            Welcome to Boomers Today. I'm your host, Frank Samson. Of course, each week we bring you important, useful information on issues facing Baby Boomers, their parents, and of course, other loved ones as well.


We always have a great show. I always start out saying we have a great show because all of our shows are good, and we have another one today. We have with us Carmen Davailus Buck. She's with Carmen's Legacy Productions. Carmen creates magic with images helping us stand out in the world. She left her career as a nurse practitioner to document the lives of families impacted by dementia and authored Just See Me: Sacred Stories from the Other Side of Dementia. She is a consultant and photographer for businesses and individuals who want to leave a remarkable legacy. She uses photography as an Alzheimer's advocate knowing less fear equals more love, compassion, and kindness.


                                      Carmen, welcome to Boomers Today.


Carmen D.B.:                Thank you, Frank. It's great to be here.


Frank:                           Yeah, a lot of great, wonderful background, interesting background. I mean, the fact that you were a nurse for, boy, over 40 years, and you go from a nurse to a photographer. All right. Tell me a little bit about how that all happened.


Carmen:                       I know. That's a big question. Like, "How in the world did that happen?" But it really makes sense when you hear it. I was a nurse practitioner for about 20 years. A good part of that, most of it, was spent in care of the elderly and those with Alzheimer's and related dementias. I'm in the clinic seeing one patient at a time or one family at a time. I was fortunate enough to either do house calls or to have plenty of time where I could spend time with the family, which is a real blessing now with 15-minute visits, right?


Frank:                           Right.


Carmen:                       Eventually, I got to know people. I fell in love with their stories and how they managed a tragicndiagnosis and the concerns and the upheaval of their lives. During the time I knew them, I just saw how they transitioned and what they did about it. I would just go home with a sense of awe thinking, "Oh my gosh, if we all knew these kind of stories, we really wouldn't have such petty concerns that we ordinarily do." It was truly an epiphany. One day I'm with a particular family in, and it was very moving and had to do with hospice. I’d always thought that somebody should be I charge of writing these stories down, but that day it was different. That day I thought, “I should write these stories down.”


                                       By the time I came home that evening, I had a plan in mind. I couldn't imagine telling the stories without the images. I had really never taken classes in drawing, but I had a good eye. I just really studied and practiced, and about a year later, I was starting to document stories and doing photos and telling the stories for these families.


Frank:                           Is that what led into your book?


Carmen:                       Yes, this is it. In my naïve mind, I thought it would take about a year. It took closer to three, which again was a blessing in a sense because what I didn't know at the time when I first started was that telling someone else’s story is very intimate. I mean, I get to know them, and they're sharing really vulnerable pieces of their lives, and what they did, and even the shame and the guilt, and how they handled it, and the isolation that they're feeling. Their story became a part of my story just as I became a part of their story. Because as their loved ones passed through the years, those photos became priceless treasures especially then. 


                                       The book is called Just See Me: Sacred Stories from the Other Side of Dementia. I had followed 13 different families for anywhere from two to three years, and I asked one question. I asked, "What is something that you want the world to know?" Not knowing or knowing what people are going to say, I got 13 different stories. For a while during the writing process I was just sitting there on my living room floor with 13 stacks of paper and hours of recording and their photos and thinking, "How do I thread these stories together?" What I realized was that each story started with a spiritual crisis, a spiritual need that wasn't being met, and stemmed from what they chose to do about it. There were 13 unique stories and different issues. 


Frank:                           Were all the families involved receptive to doing this, or were there some that just didn't want to participate?


Carmen:                       Well, this was on a voluntary basis, so many were very interested in it. There were many though who questioned the importance of the photos. They would say, "I can't imagine wanting to photograph this time of our lives." And I said, "Can you trust me on it? Can you trust me with this? I just have a feeling this is just so important." They're like, "We love you. We'll do it for you. But it's not that big of a deal." And I believe it turned out really nice, if I do say so myself. What I kept hearing was, "I didn't realize how important the photos were, how important these photos are to other family members."

                                      I mean, I've gone to a few memorial services and family members I have never met, and when I walked in and said my name, I was just kind of swarmed with, "Oh my gosh, you took those photos. I don't know what we'd do without those."


Frank:                           That's fantastic.


Carmen:                       Yeah, yeah. Gives you goosebumps. Yeah.


Frank:                           Is the book a series of photos, or is there, I mean, additional information beside the photos themselves?


Carmen:                       Yeah, so it’s photos and then it’s also their stories. Then because it took me three years, I also added in my own take, what it was like for me during this process. 


Frank:                           What's the old saying? A photo is worth a thousand words, or whatever that saying is, maybe even more than that in this case, huh?


Carmen:                       Yes. I say it just takes one photo to change the world. When we're talking about loneliness, and I make a right into advocacy, like what are we doing to help the families get attention? That one photo can stop people in their tracks and make them look and take it in. That's how change happens.

Frank:                           What I was going to ask is, with your 40-years experience as a nurse and having a background in working with people with Alzheimer's, I mean, while you're doing this, are you also doing advocacy for those families?


Carmen:                       Yes. So what came about is I realized that each family became an advocate, maybe without realizing it, because their stories went on to help other families. One thing that I heard from these families, and from many people that I encountered, was that people feel that they're so alone and isolated, and no one will understand what they’re going through. I thought, "Okay." My book is mostly read by people who are suddenly stuck with being caregivers, or dementia's new to them and they're like, "I need to learn as much as I can.”


                                       There's a lot of fear, needless to say, about dementia and Alzheimer's. It's a scary, scary thing. So when families are telling me, "Gosh our own family members run away from us or don't want to come by anymore. They don't know what to say, or they're afraid of saying the wrong thing," my thought was, "Well what can we do to help raise awareness in a way that people will not turn away from." And that's where the idea of Doggies for Dementia came about. People love dogs, and they are very comforting. I saw that connection between animals and people and I thought that we could go somewhere with it. 


Frank:                           So tell us more about Doggies for Dementia. Is it a part of your advocacy, and photography? Or is it a whole separate program?


Carmen:                       It's a part of my business, and it is a program in the business that I look at as the advocacy. I enjoy partnering with like-minded, and as I like to say like-hearted, people to work with me on these shoots. I like to deliver the photographs pretty soon after we take them, too. It’s usually very special when people see their photos for the first time. We just do our best to get those out there. The goal is for it to become viral, and to raise awareness that way. Each shoot has a story attached to it, to make it unique in that way. 


Frank:                           Right, right. So we didn't mention this, but you happen to be based in Texas. I'm sure most of your work, or all of your work might be done with people in your area, but we've got listeners all over the country, and actually in other parts of the world. If somebody was interested in your services, could you help somebody or provide your service to somebody who may not be in your area, and have you done that?


Carmen:                       Yes, I have actually, Frank, because I love to travel. Because I do get to speak quite a bit, if I'm going to be in a new area, I work really hard to set up a Doggies for Dementia shoot and just incorporate it into my schedule for the day. I was recently in New York City, so last month's shoot was in New York and New Jersey. I'm going to be going to England, London, England in June for a speaker's conference, The Public Speakers Association, and coordinating a shoot there. That would make Doggies for Dementia international, which is super cool. 


Frank:                           So if someone wanted to learn more on your organization and how to contact you, do you have a website, or what's the best way for them to do that?


Carmen:                       My website is 


Frank:                           Great. Perfect, perfect. So I'd like to talk just about Alzheimer's and other related types of dementia. This is a question I frequently ask people who have experience with it, and you have a lot of experience with it, and it continues to be a concern of mine. Many people have predicted a rise in chronic disease from our older population, something that will put a huge strain on our health-care system in the future. Do you think the country is ready for this? 


Carmen:                       No, we are not ready. No, Frank, I don't think we're ready at all on a couple different notes. I mean, the impact of dementia or Alzheimer's on an individual or family unit is going to be significant. In some cases, especially with younger onset of the disease, they're not able to work anymore, meaning that someone else in the family will need to make up for that, and as a result, their life changes dramatically. Someone also needs to become a caregiver, or they need to arrange for some care and pay for that, which is an added financial burden. 


                                       What happens in the family unit happens to us as a nation because the resources are limited for families, very limited. You can just imagine this network of impact. As we age, there’s going to be an increase in the number of people diagnosed with dementia, Alzheimer’s, and other diseases. 

                                       We have no survivors, and there's no real way or to slow it down. We think a big reason for this that is that in many diseases the primary advocates are the people who are impacted. So let's say a person with cancer, as they're recovering or have recovered, they can be strong advocates and like, "This is what the research and the trials did for me." They can speak from experience and use that to become an advocate. 


                                       But with Alzheimer's, there isn’t the same community, their isn’t that experience of the individual to shed light on the issue, or at least not as much. The role of advocate usually falls to the caregiver, not the person with Alzheimer’s. 


Frank:                           You bring up a great point. Once someone becomes a caregiver for a loved one, especially with Alzheimer's or related dementia, that they don't realize what a tremendous affect it's having on them. As we all know, and those of us that have been in the industry for a while, know that sometimes the person who is the family caregiver literally passes on before the person with the disease because of the stress of the job. So sometimes we forget about the caregivers are the ones that need assistance and need help.


Carmen:                       Absolutely. I say they're sometimes invisible in that the focus is oftentimes on the person who has the disease versus those that are there day to day. A lot of times, I'll just say especially with women, themselves and their needs tend to be a little bit more invisible. 


Frank:                           I know some may disagree with me, and this is just a very general statement. But in my experience, and I'm talking about Alzheimer's disease specifically, that while it’s sad to see, the individual might actually be doing okay. I mean, they're in a different state. It's the actual family caregivers that are probably doing more of the suffering. Would you agree?


Carmen:                       You know, it depends. Sometimes people are very aware, especially as they start to lose cognitive abilities, they lose parts of themselves. They're not able to do as much during this time and it can be incredibly difficult for them. It can lead to all kinds of mood swings, understandably, and problems in that way. 


                                       But then as time goes on, things change, and the person really isn't aware, we don’t think, of what’s going on as much as the care partner, the caregiver. However that varies from person to person, and we don't often know exactly what a person is feeling or experiencing because their ability to express that is impaired.


Frank:                           You know, I could talk to you all day long. But with the few minutes we have left here, I want to know. For any family members out there listening, who may have a loved one who was recently diagnosed with Alzheimer’s or dementia, what advice would you give them?


Carmen:                       Well, I want to say first that although it may feel like you are alone in this, remember that you are absolutely not. That this is something that people across the country, and around the world, are also going through at this time. 


                                        I know there's this huge stigma associated with Alzheimer's and dementia. There’s a fear piece in it. People tend to move away, step away, out of fear. But the only way to change that is to have the courage to speak up and to ask for what you need. Sometimes you don't even know what you need, but even saying that is okay because there are people out there who have been there. It amazes me how when I mention what I do, people start speaking up. But it takes one courageous voice to say, "I'm having a really hard time. I've got someone I love who has Alzheimer's, and I'm not sure how to deal with it." Slowly, we can start making change. But it requires one courageous voice to make it happen. 


Frank:                           That’s great, and that’s very true. Thank you. Today we’ve had with us Carmen Davailus Buck. You can learn more on her website by going to I just want to say, Carmen, thank you so much for joining us on Boomers Today. And I want to thank everybody listening for joining us on Boomers Today. Just be safe out there. Talk to you all soon.



The Other Side of Dementia (with transcript)