The Memory Generation
Episode 13: Gina Martin
INTRO
Rachael Cerrotti: Hey everyone, I’m Rachael Cerrotti. Welcome to The Memory Generation – a podcast about the memories we inherit and the stories that are passed from one generation to the next.
For much of this show, we have talked to people whose lives are still affected by the memories of parents, grandparents and past generations. We had Nare Mkrtchyan on Episode 7 who was the granddaughter of Armenian Genocide survivors. And then Cliff Sebastian on Episode 8 who was born into the Mashantucket Pequot Tribal Nation in Connecticut. And most recently we featured Elizabeth Rosner who is the daughter of Holocaust survivors. But today, we are taking memory in a different direction and exploring memory loss through the lens of Alzheimer’s and dementia. What happens when a family member loses their memory – and with it, their ability to relate with their community and their sense of self?
I am joined in this conversation by Gina Martin. Gina has been a force in the photography world for decades and spent 21 years working for National Geographic representing photographer’s work worldwide. It was here that she really learned the profound impact of visual storytelling. And, when her mother passed away from Alzheimer’s, Gina recognized that photography can powerfully express experiences of loss and loneliness. In 2016 she founded the Bob & Diane Fund. The fund is named after her mother, Diane, and her father, Bob, who was a loving husband of 50 years and a loyal caregiver. Every year, the Fund gives a $5000 grant to support visual storytelling about Alzheimer’s and dementia.
Gina and I recorded this conversation on October 6, 2022. She lives in Washington D.C, but spoke to me from her sister’s home in California. I was on the opposite coast over here in Maine.
INTERVIEW
Gina Martin: My parents met in high school their junior year and they were married just shy of 50 years. We lived in a great neighborhood with like 10, 12 other families who were all our age and we spent so much time with our big Italian and Portuguese family and our neighborhood families. And just had kind of like that perfect childhood. My parents were happily married. They were always affectionate, always holding hands. They were really good role models for us and for a lot of their friends. And my mom was 65 when she was diagnosed with early onset Alzheimer's.
Rachael Cerrotti: How old were you at that time when she was diagnosed?
Gina Martin: I think 37 about cause I think I was 42-43 when she died. So she had it for five years and none of my friends were going through it. No one. Umm, my dad's mother had it, but for a very short time. For I would say maybe a year. So I didn't, I mean - I had a little exposure to it, but not a lot. I had some very distinct memories of my grandmother with it that did scare me with my mom, but I really didn't have a full understanding of what it was.
Rachael Cerrotti: Do you remember the feeling when you first found out that she had Alzheimer's? Could you take us there, of what that felt like?
Gina Martin: I was at a hotel bar in D.C. with friends when my dad called me, I’m sure it was my dad, and said they saw shrinkage of the brain and that's when I knew. But I just always went back to my grandmother when she was sitting in our family room, kind of with this just dead stare. And that's what I remembered. And that's what scared me with my mom is that just blank stare. And that was probably the first thing I thought of and just knowing what was coming. I couldn't live in the day with her. I really worried about the future with her much more. I mourned her during the illness. I cried a lot. I was definitely preparing for it. I knew what was to come.
Rachael Cerrotti: Hmm
Gina Martin: So many people associate Alzheimer's with just memory loss - forgetting to turn off the stove or putting their purse in the refrigerator. That is such a small part of it. The biggest part is a complete change in personality. Completely. You are now living in their world. And you have to adjust 100% the way you communicate with this person and the way you handle them and talk to them, you know, everything. It really is a personality change. So my mom was just as nice as the day is long and she just never got nasty or swore or anything like that. And that would come out. And you just had to calm her down and, you know, just not argue. Umm, I always give an example and she didn't do this, but this is just an example. Like if we were having soup for dinner and she put knives out, I would just say, ‘Oh, thanks, I need that.’ And I would just take it. I wouldn't say, ‘Mom, we don't use knives with soup.’ You don't call them out on it. You just take it. Get up, get the spoons and not make a deal out of it. That is what I encourage my friends today when they're dealing - because now so many of my friends are dealing with this - that you just try not to be confrontational and don't say, ‘I told you this already.’ ‘I already gave you this information.’ You just - you don't do that because it really upsets them, confuses them. Try to just be calm and understand that it is the disease. 100%. The memory part is just a small part of it. It's mostly recent memory that they don't have. Their long term memory usually is still there. But they forget to eat or how to eat and wearing the same clothes every day and that type of thing. So you really have to adjust the way you deal with this - with the person living with it.
Rachael Cerrotti: You mentioned that you were grieving for her as she was progressing with this illness.
Gina Martin: Mmhmm
Rachael Cerrotti: I'm curious what you missed about her as she was progressing. Like, what were you missing in the moment?
Gina Martin: Definitely my mom because I talked to her all the time. And I've always said I admired my parents so much but they were not my best friends. I did not tell my parents my deepest, darkest secrets. But, I did talk with them almost every day. You know, about work or family, mostly family and their family friends because they had a big life. And so I'd always ask, Oh, how so and so and how’s so and so. I missed having my mom there. And my mom was great at giving advice. Really good at giving advice. That I missed. And I think, again, it wasn't what I was missing now. I was dreading what was coming tomorrow.
Rachael Cerrotti: State of fear.
Gina Martin: Mmhmm. And then also keeping my dad healthy. So like I said, my mom was diagnosed at 65. The first two years were okay, maybe two and a half to three, but the last two years were tough. And my dad was a very loyal caregiver. He did a great job taking care of her. And she died on October 31st, Halloween 2011. And they were high school sweethearts. Their birthdays were seven days apart. We made it through Thanksgiving. We made it through Christmas. It was tough. And then the next one was going to be her birthday on February 4th. We made it through that. That was their first birthday, not together since they were 18.
Rachael Cerrotti: Wow.
Gina Martin: And then seven days later was his birthday and that we knew was going to be tough. So my brother and his wife took him to dinner and they got him a little dessert with a candle and he made a wish and he dropped dead 30 minutes later.
Rachael Cerrotti: Wow.
Gina Martin: And it was on his 71st birthday.
Rachael Cerrotti: Was that a heart attack?
Gina Martin: Mmhmm. And my dad had a bad heart. He had rheumatic fever when he was nine, but he was very active. It came out of nowhere. Umm, so that was traumatic. But in a way it was just a beautiful ending to their love story that they were together again. And on Valentine's Day, you know, seven days later, I know they were holding hands up there.
Rachael Cerrotti: Can I call that romantic?
Gina Martin: Yes.
Rachael Cerrotti: Is that okay? Yeah.
Gina Martin: I always say it's the perfect ending to their love story. I did not want my dad to grow old without her. She could have grown old without him.
Rachael Cerrotti: Can I dig in a little bit to that statement? Like why you feel as though that you didn't want him to grow old without her, but vise versa it could have been okay.
Gina Martin: Because my mom had a much better support system. She had like 15 best friends from the time I was six months old. All the same women. So she had a very big support system and my mom had nerves of steel. She could have been a CIA agent. She was just always calm, never repeated anything. You tell her something and it's in the vault. And she could have really handled his illness or his death better. Not well - I mean she would have been heartbroken, but she would have probably been on a plane traveling within a few months and gone exploring and grabbed a girlfriend and gone off to who knows where. My dad, who was, you know, successful and they were both very independent. He didn't rely on my mom, but as they got older he didn't have as many male friends which is very common. They had so many couple friends. I mean, he had good guy friends, but a handful. And he wanted to talk about her illness all the time and the impact it was on him all the time, which he had every right to do. But it was always like, how is Mom? Good, but this is what it's doing to me. And he would just go and we’re like, okay, you know, we got it. I feel bad saying that, but that's just how it was.
Rachael Cerrotti: Well, I think you're bringing up something that in the little bit of research I've done about Alzheimer's disease. A number of doctors have said that like you get almost like two patients – the person who has the disease and then the caregiver. Like there's a whole other patient in the caregiver.
Gina Martin: 100%. You have to take care of the caregiver. Especially if it's like your parent then the children have to make sure that that person is healthy and being taken care of. I was 3000 miles away, but I knew their bank teller. Everything that they did, I knew. Because I was constantly calling them and asking them where they were, what they were doing. And my dad, he loved to play golf, but he wanted to try to stop because he couldn't leave - my mom could not be on her own. And I said, absolutely not. And I did a month out. I had one of her girlfriends coming to visit - babysitting for 4 to 5 hours - 6 hours every Tuesday. And I would throw out an email to everyone. I said, okay, who can take this day, this day, this day and this day? And I would have it all scheduled. So he could get away for a day. And I mean, he always said he played lousy golf then, but that's okay because you know, he had so much stress, but he was able to get out and play golf. And then I would email all her girlfriends and say, please call my mom but only call her if you have thick skin. Because if she hangs up on you or calls you a bitch, don't take it personally and do not call me and complain about it. Just call her because every time you would get her on the phone and talk to her, she wasn't following my dad around going, ‘What are you doing? What's that?’ You know, he couldn't go to the bathroom by himself practically. So I called five times a day just to give him that break, keeping her occupied so he could go and pay bills and do things. That was really important. And because he had a bad heart, my brother and sister and I were like, you know, he could go first. We need to have a plan B and we did. But that was something we worried about and that is such an important part of any type of illness is the caregiver.
Rachael Cerrotti: I'm wondering if watching your father become a caregiver, if that has changed the way that you saw him or experienced him as a father figure?
Gina Martin: No, not really, because I already knew that he loved my mom. It wasn't like they had this distant relationship and then he finally stepped up to the plate and took care of her. That wasn't my experience or their experience. So it didn't surprise me at all, you know, that he did as well as he did. I expected nothing less of him and I would have expected nothing less of my mom. You know, I probably admire them more. I mean, I probably put my parents a little bit too much on a pedestal. But, umm –
Rachael Cerrotti: Not a bad thing.
Gina Martin: I know.
Rachael Cerrotti: And that's a perfect lead in to the Bob and Diana Fund – a fund that you created after your parents died in their honor. And the Bob and Diane Fund offers an award and funding for a visual storyteller who's working on a story about Alzheimer's disease and dementia.
Gina Martin: Mmhmm. During my mom's illness, I could not read anything about Alzheimer's. I'd never watched a movie about it. I did not read books, nothing. Even couple of years after their deaths, it was the same. And one day in 2016, I was in a position where I had some money I wanted to do something with. I had like $5,000. I had been working at National Geographic where I worked for 21 years. I'm a huge supporter of photographers. I buy their books. I buy their prints. I mentor. All this. And it's a really difficult business for photographers and I wanted to support them somehow. So I had talked to a friend about giving a grant to maybe like five photographers in a developing country. And he said that is a great idea. That money would be so useful, but you have no connection to this country. Why don't you do it about Alzheimer's and name it after your mom? And I was like, oh my gosh, how did I not think of this? This is brilliant. So. I think I bought the domain that night, and I knew I needed to name it after both of them because it affected both of them so largely. And it is a $5,000 grant that we give to a photographer anywhere in the world to help them finish a project, get it published to a book form or to get it exhibited. And hopefully that $5,000 helps them do this. And I truly believe that visual storytelling and visual images can bring awareness. Working at National Geographic, I saw it. It can change perception. It could change policy. Visual storytelling can make a difference. And I wanted it to bring an understanding to a disease that one, was in the shadows for very long. And I wanted not just to bring Alzheimer's into the light. But for people to understand what it was. You know, if you haven't lived with it in your family or someone close to you, it's so hard to understand. People think it's just about losing memory.
Rachael Cerrotti: And likely most people will probably have some sort of –
Gina Martin: Mmhmm
Rachael Cerrotti: Whether it's them or somebody they know.
Gina Martin: Distant family. Yes.
Rachael Cerrotti: Yeah
Gina Martin: Yep. Someone they know. Absolutely. So I really wanted to bring this visual awareness and understanding because once you understand something, then you have empathy, then you have caring about it. Then you want to do something about it and hopefully then start volunteering or donating. And donating to Alzheimer's Association or any type of organization that helps with research which is going to help find a cure. And that is what the real drive was behind this. So we created a board, we created a nonprofit. We're a501c3. I raise money for it. And I’ve become an advocate which I never thought I would do. We get published all over the world which is amazing. So I've done interviews and podcasts and radio interviews. I've spoken at a conference and never, ever would I have thought I would do any of this. I'm not an expert on it. I do not want to go and lobby Congress on it. I don't know that level, but I know what the fund does and I know visual storytelling and I know photography and it's been amazing.
Rachael Cerrotti: And are these stories following more the experience of people going through the illness? Or is there as much storytelling attention given to kind-of who this person was prior to being diagnosed?
Gina Martin: Both. There's no limitations on the story. But It has to be about dementia in some form. It could be science related. You could do diptychs of brain scans with a photo of your father's book. You know, you could do really interesting things and I’ve seen that - the caregiver, the actual person living with it. Our second grantee, Christopher Nunn - he did a project on a gentleman he met in the grocery store. And he was kind of a well-known artist in his area up in the U.K. and he had asked him - so he wasn't too far along where he was able to ask permission to document him. And that's what he did. Our first grantee, Maja Daniels, did a project in France of a hospital ward. It was a memory facility and how they always kept the door to it locked. And so she photographed the people living with it at the door, looking through the window, waiting for someone to come see them, to come take them away.
Rachael Cerrotti: Wow
Gina Martin: And it was heart wrenching but beautiful work. And what we do is we really, really look at the photography. I mean the story obviously is important, but it's got to be strong visually before they really look at the proposal or what they want to do with it.
Rachael Cerrotti: I was looking through the website where you have some of the recent winners listed and some of their stories. And I was looking at a story called Keeping Mum by Paul John Bayfield.
Gina Martin: Oh, yes.
Rachael Cerrotti: And I mean I was - I was just like I had tears in my eyes. It was so beautiful. And I think that the story documents his mother's journey from diagnosis to death. That's how he writes it.
Gina Martin: Yes. Which is amazing to continue that long –
Rachael Cerrotti: Yeah
Gina Martin: of a project. From diagnosis, yeah.
Rachael Cerrotti: And to start with the diagnosis, too.
Gina Martin: Mmhmm
Rachael Cerrotti: And then her final year of life was when COVID happened. And I think that the thing that really broke my heart was when COVID came, not being able to explain to her why he wasn't coming to visit and the type of toll that it took on her physically.
Gina Martin: Yes. He was taking care of her at home. And, you know, this is her son who bathed her and helped her use the bathroom. I mean, he did everything. And then she had to go into a facility. I can't remember what it was, whether she broke her arm or something. And so it was just in a rehab facility for a short while, but was coming home. Then COVID hit while she was already in the facility. So he wasn't able to talk to her about it and then put her in the facility. She was already there. So he didn't have that way of communicating that to her. But what I loved when he had sent me this one photo. So they always ate together, breakfast, lunch and dinner - and they couldn't. So I think he had made sure she was near a window for her bed. I'm not sure about that part, but she was. And she wasn't eating her meals. The nurses had told him. So he set up a table right outside her window with a tablecloth, a little vase with a flower. He brought a meal and a chair and his silverware and he ate and that's when she would start eating. And he documented it and sent me this picture and I said, ‘do not do anything with this. Let me send it to Geographic. This is an amazing image.’ And I sent it to a photo editor and they ended up doing a story.
Rachael Cerrotti: Coming from the photography perspective —
Gina Martin: Mmhmm
Rachael Cerrotti: How do you document memory loss? We're talking about something that almost feels very abstract. So, yes, there's physical changes that happens with Alzheimer's Disease and Dementia, but there's also this invisible change that you can't quite see. So, you know, you've seen so much work. What are some ways that people are able to document this invisible change?
Gina Martin: People have been very creative. You can photograph a notepad with a list of like the most simple thing - you know, wake up, shower, go to the bathroom. Like a list of things that either they have written or a loved one or caregiver has written for the person. So just seeing that little note and documenting because you can relate to that, they have to be reminded to go to the bathroom, to eat, to change their clothes. The body language of the person. I remember, umm our third or fourth year, Stephen DiRado, I can't remember which year, but he did this amazing large format, black and white project of his father and one of the last images in the project his father is in. I think it's a hospital in a wheelchair and totally slumped over. And his body just - and has - his position and disposition shows exactly kind of where he is in his memory loss and his life and it's got movement to it, this image and it just says so much. Our winner from Iran photographed this beautiful image of his family in Iran kind of in one room. It may have been even outside. And then there's a glass window and his father is in the family room by himself. And the family outside is celebrating or talking and communicating and sharing and all that. And then there's the lone image of his father in the same shot in the house alone. And that just to me says so much because I obviously don't know what it's like to live with it, but it feels and looks so lonely.
Rachael Cerrotti: Yeah.
Gina Martin: That's what those - a lot of images can capture. And it can capture other beautiful moments. Like my cousin is going through it right now. It's my mother's cousin. And her experience with the disease, she is a pretty happy person. She laughs a lot and smiles a lot. My mom wasn't like that. So, I know there's different experiences. It all ends up coming to the same ending, but I’m guessing most have a loneliness about them. But there are people who live with dementia who still live a life because it could take many years. My mom's was a short time of five years. Some people could have it for many years and still contribute to society. We did a project before COVID. It was called Still Living and it was a photo contest by people with the disease. So it was Still Living as in photo stills and still living that they were still contributing, they were still living. And I had met some people who lived with the disease who still could take a picture and went on walks and went to the park and you know did things. And I just thought it was so important to show that in certain stages people are still contributing to life. And you need to understand that when someone is diagnosed, it's not a death sentence right away. They still have something there and you have to treat them that way. You have to treat them still with dignity and respect and appreciate that time.
Rachael Cerrotti: Were you somebody who documented your family?
Gina Martin: No, I didn't. I interviewed them towards the end. I have it on audio. I have just like family snapshots. And again, like I admire people who have documented their loved one or parent or whoever through this process. There is no way I could have done that. I did not have the strength to document my mom's illness. I've got a couple pictures of her where I took pictures with her and her girlfriends, but it wasn't something I could do. But I have so many photos of my family from growing up and whenever we were together, we took pictures, but I didn't document.
Rachael Cerrotti: It's interesting how some people really actively process and heal through documenting and for other people it would hurt them to do it.
Gina Martin: Mmhmm
Rachael Cerrotti: I'm one of those people that for me that I've documented to process and heal. It seems like there's these strong instincts that kind of come out in these types of situations. And for those who have a camera to either pick it up or put it down.
Gina Martin: Yes. It's not something I could have done. For a long time I couldn't watch a film or read a book about it or read an article. People always sent me stuff and I just said, Oh, thanks, and I trash it. Umm, it was just too personal.
Rachael Cerrotti: But now you talk about your parents all the time.
Gina Martin: All the time. All the time.
Rachael Cerrotti: I'm wondering if that always feels like a positive -
Gina Martin: Always. Always. I smile when I talk about them. I stay in touch with all my mom's friends. All of them. I love to have lunch or dinner with them and talk about my parents. I love it. And I just always say, you know, I lost both of them at 42 or 43 and I definitely mourned them. I did, but I much more celebrated them. I was lucky. I had great parents for 42 years. Not everyone can say that. I have friends who talk to their parents maybe once a month, you know, visit them once a year, if that. I couldn't imagine that. I'm just really grateful. I have amazing memories.
Rachael Cerrotti: To round out this conversation, we started with your parents and their nearly 50 years of life together. So let's end on a memory of them. You said that they were just like a wonderful couple to be around and lovely and holding hands and affectionate. So give me a good romantic story of theres. What is the story that they shared about their life together?
Gina Martin: Well, first of all, a lot of it I can't say on this because my dad had a very umm - he had a quite a sense of humor. So I will say that. So, some things I can't say. He was such a smartass and he would say very, like, funny crude jokes to my mom. So I'm not going to say that and this isn't a romantic story, but this is a story that came to me immediately. So, many years ago I was working at National Geographic. I was refinancing my house for the first time. So my dad said, Well, when you do it, make sure you take out an extra like $5,000 for your savings account. I said, why? Like, if I lose my job or break my leg. He's like, ‘No, so when a friend needs to borrow it, you have it to lend.’ And I will never forget that. I wrote an email sent to my brother and sister. My brother responded, ‘That's mom and dad - 100%.’ So not really romantic, but it was absolutely who they were.
Rachael Cerrotti: And There's some symbolism there of the amount of money that you grant out.
Gina Martin: Yeah. Yeah, it was 5000.
Rachael Cerrotti: Gina, thank you so much.
Gina Martin: Thank you so much. I loved this conversation.
OUTRO
Rachael Cerrotti: Thank you to Gina for joining me today. You can learn more about the Bob & Diane fund at bobanddianefund.org. We will also link it on our website.
The Memory Generation was created in partnership with USC Shoah Foundation which is home to more than 55,000 testimonies of survivors and witnesses of genocide. You can learn more about their work and the Visual History Archive at sfi.usc.edu.
You can find additional links, book lists, testimony clips and all types of other resources and stories on our website: memorygenerationpodcast.com. Our editor is Lene Bech Sillesen. Our executive producer and co-creator of this show is Stephen Smith. The music is from Kodomo.
I’m Rachael Cerrrotti. Thanks for being with us.