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In “The Day After Yesterday: Resilience in the Face of Dementia” (MIT Press), photographer Joe Wallace has chronicled the stories of families who have lived with Alzheimer’s. Among them: Carrie Richardson, now 44, whose family carries the PSEN1 gene, making them genetically predisposed to developing early-onset Alzheimer’s.
Read the excerpt below, and don’t miss Dr. Jon LaPook’s interview with Carrie Richardson and her daughter Hannah, who are participating in a clinical trial at Washington University School of Medicine in St. Louis studying Alzheimer’s, on “CBS Sunday Morning” November 9!
“The Day After Yesterday” by Joe Wallace
Carrie + Bryan
Excerpt from an advocacy speech given in 2015 by Carrie Salter-Richardson
My father was diagnosed at the age of 36 with dominantly inherited Alzheimer’s disease. He had already lost his mother and two of his brothers. He and his younger brother were diagnosed about the same time, and for seven years, I watched my dad and my uncle slowly wither away. On August 22, 1996, my father turned 43. A friend drove me to the nursing home to take him balloons and wish him happy birthday. I struggled with my faith as a young teenager but on that day, I prayed to God for my father’s death. I knew when I left there, it would be the last time I would see him alive, if that’s what you want to call it. My dad died the next day.
We didn’t really speak about Alzheimer’s again until 2009 when I got a call from a long-lost relative letting me know that my oldest cousin had been diagnosed and was already in a nursing home. He died two months later at the age of 37. After his death, we began to do some research and discovered DIAN or the Dominantly Inherited Alzheimer’s Network. They helped us determine that our family carries the PSEN1 gene, and we enrolled in an observational study at Washington University in St. Louis.
Joe Wallace 
As part of the study, we were offered genetic testing to determine if we carried the same gene mutation. My brother Bryan was the first to have the genetic test done. Bryan and I are 18 months apart. We’ve always been best friends. He was always the best at everything. He excelled at sports and performing arts. He was popular and outgoing and the funniest person I know. When I got the phone call that he had tested positive for the gene, a piece of me died.
On December 4, 2012, I drove to UAB (University of Alabama at Birmingham) to hear my results. I remember sitting in a little room for what seemed like hours waiting for the doctor and genetic counselor. When the door finally opened, I knew my answer. It was written all over their faces. But to hear the words, “It’s not good news,” took the wind out of me. I showed little emotion while the doctor was talking. I just nodded my head and thought about sitting in that nursing home with my dad. I thought about how I would tell my children. Would they too pray for my death? I knew there were many people waiting for my phone call and hoping for good news. I dreaded making those phone calls.
For a few weeks, I let it consume me, felt sorry for myself, and spent a lot of time crying. But I knew there were three people who depended on me, so I decided to make a lifetime of heartache into a quest for hope. I joined a clinical trial through DIAN. I became a volunteer for the Walk to End Alzheimer’s, which led me to become a congressional ambassador for the Alzheimer’s Association. I’ve traveled to Washington, DC, to meet with representatives and senators, advocating for more federal funding for Alzheimer’s. I’ve been to the Montgomery statehouse. I’m now the chair of the walk. I don’t ever want my children to see me give up. I don’t want them to feel hopeless.
It is my hope that my story and the stories of others just like me will start a conversation and end the stigma that comes along with this disease. Just maybe I can bring a new face to Alzheimer’s so people know that it can happen to anybody, not just the elderly. I don’t know where my story will end. But I do know that I will never give up hope for a world without Alzheimer’s.
* * * * *
In the spring of 2021, I spoke with Carrie and planned a trip to Montgomery, Alabama, to photograph her and her brother Bryan.
Carrie told me, “I was 15 when my dad died, but when he was diagnosed, I was only seven. I didn’t understand. Nobody ever really tried to educate us about it. My dad was the last one to die of the kids that got it. After that, we didn’t even think about it anymore. We just kind of went on with our lives as far as Alzheimer’s was concerned.
“Growing up with my dad’s illness — him and my youngest uncle are like Bryan and I, the same distance apart in age — they went through it together. Because we didn’t understand the symptoms of the disease, we were really embarrassed by our dad. We didn’t want our friends to be around him. We laughed at everything he did and said. It was silly. It’s hard to look back and think the last years I had with my dad were me just being embarrassed by him. He played baseball in college. He played minor league baseball for the Phillies. He did a lot of great stuff, but all that we remember now is how his life ended in a nursing home. He weighed 70 pounds on a feeding tube in a nursing home.”
I asked Carrie how that experience informed her decision to become a vocal advocate and she replied, “I didn’t know how the reactions would be, putting it all out there. Trying to break that stigma. It really helped me heal from the devastation of the news. I think that it showed my kids that I’m not going to just lie down and cry and do nothing. I’m going to try to educate people. Of course, I’m not an expert on the disease at all, but I think the best thing I ever did was to sit down and talk with my kids, because it inspired my daughter Hannah to want to do something about it.
“My oldest daughter is a student at WashU. She’s a sophomore. She is working as an undergrad in an Alzheimer’s research lab right now. It’s really awesome. She’s actually my best friend. She’s at school now, so it’s hard.”
I asked, “Does she give back to you with messages of encouragement or hope? What does she say back to you now that she’s an adult?”
“She just tells me that she’s proud of me, and she’ll tell me if I’m slipping up on stuff. She’s kind of like a mama bear, but she’s a nine-hour drive away. We FaceTime a lot. She calls me every day just to make sure I’m good.”
I asked Carrie, “Do you talk to your brother (Bryan) about how you’re feeling and how he’s feeling?”
“We just make jokes about it to each other, because I feel like we’re the only ones that can joke about it. He’s very witty. He comes up with some really funny stuff. We don’t sit there and have deep discussions about it, because he doesn’t think that he is symptomatic, and everybody else knows that he is, and I’m not going to tell him otherwise. We just kind of interact the same way we always have, which is by goofing off, joking around.”
“Does Bryan have kids too?”
“No. He’s gay. He never had kids. I’m the only one that had children, which makes me feel very guilty. I do carry a lot of guilt for that, because now they all have a 50 percent chance of developing it as well.
“My mom would have you think I’m about halfway in my grave. She’s a hard one to deal with. I give her a hard time, but Bryan does need the help, and she does help me with a lot of stuff too. If I get stressed, she’ll do my healthcare and all the things that really frustrate me. For some reason, I get stressed out so easily. She’ll do it. She’ll fill it out for me. She’s helpful, but then she’s also overbearing. Maybe that’s how all moms are. I don’t know.
“I know the differences that are happening with me, and my kids definitely know. They mention it. I do get flustered a lot easier than I used to. I used to be able to manage a lot more things on my plate than I can manage now. Just little things. I try to write everything down in a planner, but then I forget to look at my planner. I do have bouts of crying spells, which is weird for me, because I’ve not done that before. I won’t even know why I’m crying. I’m just crying.”
* * * * *
A few weeks later, I was able to photograph Bryan and Carrie together in the backyard of their mother Mary’s house in Montgomery. A few years ago, Bryan was struggling to live on his own and had to move back home from Atlanta. Mary is now Bryan’s primary care partner. She helps Bryan with life’s daily tasks and helped secure him a job at a local nursery where he can still enjoy work but in a safe and caring environment. Carrie had told me ahead of time that, despite only being eighteen months older than her, Bryan’s Alzheimer’s is much more advanced, and he has trouble communicating.
I asked Bryan and Carrie what they would tell someone who was newly diagnosed.
Bryan looked at Carrie and blurted, “You go first!” Carrie laughed and responded, “When you’re first diagnosed, at that moment you think it’s the end of the world and your whole life is crashing down. But it’s the complete opposite. It’s given me so much more courage and brought me to meet so many wonderful people.”
Bryan paused with a sigh and said, “I’m bad at speaking. Sometimes I struggle at work. But I get through it. Pennies and nickels and stuff … the register … it drives me nuts! You know what I mean? If someone is trying to use a check I have to ask for help. I struggle every day at work. But I still like it. I’m not very good at the computer. I can’t type really fast. Sometimes I lose my train of thought. I used to be the wittiest person in the room, but I feel like it’s kind of dimming for me. But I can still pull some jokes out.”
* * * * *
Hannah Richardson was a sophomore in college when we met on the Washington University campus in St. Louis. I had previously interviewed and photographed her uncle Bryan (forty-one) and her mother Carrie (thirty-nine).
I asked Hannah about her family and her journey as a young Alzheimer’s advocate and now college student. Because Hannah was so young when her mom Carrie was first diagnosed, she had to face the stigma and stereotypes of people living with Alzheimer’s very early.
Joe Wallace 
She told me, “I’ve had multiple people in my life tell me that my mom is lying. I’ve had people, friends and classmates tell me that since my mom is so young, there’s no way she could have Alzheimer’s. To my face people have told me that, and it’s so hard to deal with that. When that first happened, I was fourteen and my mom was already doing some advocacy work.
“I was just shocked that someone would even think that or say that to me. That pushed
me to follow my mom and try to be more active in the advocacy realm and to educate people my age, I started volunteering with my mom, and I eventually started my own chapter of the Youth Movement Against Alzheimer’s at my high school. It was really empowering and it kind of pushed me to want to do more advocacy- and education-type work.
“It was such a surprise to see how little people actually knew about it, even into college.” I asked Hannah to tell me about her mother and how she copes, and she told me, “There have been moments where I feel so devastated and defeated by it that it literally breaks me down.
“My therapist said, ‘It’s like grief, like you’ve lost someone, but you haven’t lost them yet, but you know it’s coming.’ To me, I feel that’s even harder, because you’re waiting, and also my mom has been asymptomatic.
“I don’t think she’s asymptomatic now. She still does. But in the last few years, I’ve started to see those little signs, and those little, subtle changes slowly happen. It was reality hitting me in the face.”
I asked, “What are the little signs that you’ve been noticing, because your mother and your uncle Bryan present very differently?”
Hannah said, “They definitely do. My mom was asymptomatic until probably about two years ago. She still tells people she’s asymptomatic, because no doctor’s told her she’s neurologically symptomatic. She’s not forgetting things. She’s not having the same things my uncle is experiencing, but I still think she is, because behaviorally she’s not the same person she was. When I was growing up, my mom loved to be very social. She was always around her friends. She played tennis. She had all these different friend groups that she spent time with. She cared a lot about her friends, and now she has no friends. She does not see anybody.
“Going to the store stresses her out. Me FaceTiming her on the phone gives her so much stress, and she gets overwhelmed by it. Any type of social interaction, if it’s more than just someone talking to her in the kitchen, it’s overwhelming to her, and she gets agitated and frustrated and just lashes out.
“Three or four years ago, that was not the case. If you try to bring that up to her, she’s in full denial of it. It’s really hard, because she’s definitely interacting with other people very differently than she used to.
“When I go home and when I talk to her on the phone and I see these things, it’s definitely really hard, because it’s like my mom isn’t who my mom used to be, and she doesn’t even realize it or acknowledge it. I think that makes it even harder, because if you try to bring it up to her, she denies it and thinks that I’m just pulling it out of thin air, but I’m not, and other people see it too. It makes it a lot harder to acknowledge and deal with it. I think her way of coping is not acknowledging it and not grieving it or being upset about it and just not even trying to think about it happening.
“That’s been hard, because I think that was part of why I didn’t face reality for so long, because she just tried to help others and didn’t act like it affected her. But it does. And it affects her and my siblings. I think it made it a harder journey in that sense, and I wish that she would acknowledge it more. I don’t know how to change that, but it definitely makes it harder. I get sad about it and I get anxious about it. I worry for my future because I know that I have a 50 percent chance of having Alzheimer’s. I don’t want to lose her and lose my siblings. I don’t want to die!
“I get anxious and sad, and I’ve never heard her talk about that. I’ve had to kind of cope with those emotions and go through that in my own way, because she wasn’t there. I didn’t see how she did it, and I didn’t see how she was doing as something to relate to.”
I asked Hannah, “How did your family’s history with Alzheimer’s influence your decision to study medicine?”
“I saw how in the beginning my mom didn’t just shut down when she got her diagnosis but
tried to be active in the community and try to educate others. That was really inspiring to me, because she didn’t just sit down and take it. I want to do that as well, because my mom’s always been someone I’ve looked up to my entire life, and I just admire her strength.
“When I was in high school, I started going with my mom to her yearly visits at WashU and
seeing what the doctors do. I told them I was really interested in science, and they’d let me go in during some of her scans. They’d tell me about the brain and stuff. It was really cool, and I really enjoyed it. These people are doing work that actually impacts people’s lives, and that’s something that I really want to do. I got really inspired and thought ‘I want to go to WashU. I want to go into research. I want to do what these doctors are doing and help people.’ I just focused on that a lot. It’s also a way to cope with what my family is going through. I can do this, and it will help, and that will be something I can be doing that’s proactive to help my family and other families and everyone in the Alzheimer’s and dementia community.
“I think my wish is like everybody else’s — I want there to be a cure or treatment, because it terrifies me to think that I could have this. It’s the scariest thing I can think of, and I don’t want it. All I can hope is that there’s something that someone somewhere can figure out to stop this and stop people from dying from it. Stop people from having to go through it, and watching their loved ones go through it. Because I sure as hell don’t want to watch my mom go through it, or my uncle, and I don’t want to watch me go through it or my siblings. Knowing there’s nothing right now, you just feel so hopeless and helpless. I think that’s part of the reason why I want to go into research, because I don’t want to feel helpless and hopeless. That is what scares me most in the entire world.”
Excerpted from “The Day After Yesterday: Resilience in the Face of Dementia” by Joe Wallace. Copyright 2023. Reprinted with permission from The MIT Press.
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