E-book excerpt: “The Day After Yesterday: Resilience in the Face of Dementia”

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In “The Day After Yesterday: Resilience in the Face of Dementia” (MIT Press), photographer Joe Wallace has chronicled the tales of households who’ve lived with Alzheimer’s. Among them: Carrie Richardson, now 44, whose household carries the PSEN1 gene, making them genetically predisposed to growing early-onset Alzheimer’s.

Read the excerpt under, and do not miss Dr. Jon LaPook’s interview with Carrie Richardson and her daughter Hannah, who’re collaborating in a scientific trial at Washington University School of Medicine in St. Louis learning Alzheimer’s, on “CBS Sunday Morning” November 9!

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“The Day After Yesterday” by Joe Wallace

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Carrie + Bryan

Excerpt from an advocacy speech given in 2015 by Carrie Salter-Richardson

My father was recognized on the age of 36 with dominantly inherited Alzheimer’s illness. He had already misplaced his mom and two of his brothers. He and his youthful brother had been recognized about the identical time, and for seven years, I watched my dad and my uncle slowly wither away. On August 22, 1996, my father turned 43. A pal drove me to the nursing house to take him balloons and want him pleased birthday. I struggled with my religion as a younger teenager however on that day, I prayed to God for my father’s dying. I knew once I left there, it might be the final time I’d see him alive, if that is what you need to name it. My dad died the following day.

We did not actually discuss Alzheimer’s once more till 2009 once I received a name from a long-lost relative letting me know that my oldest cousin had been recognized and was already in a nursing house. He died two months later on the age of 37. After his dying, we started to do a little analysis and found DIAN or the Dominantly Inherited Alzheimer’s Network. They helped us decide that our household carries the PSEN1 gene, and we enrolled in an observational examine at Washington University in St. Louis.

As a part of the examine, we had been provided genetic testing to find out if we carried the identical gene mutation. My brother Bryan was the primary to have the genetic check finished. Bryan and I are 18 months aside. We’ve at all times been finest mates. He was at all times the perfect at all the things. He excelled at sports activities and performing arts. He was standard and outgoing and the funniest particular person I do know. When I received the telephone name that he had examined optimistic for the gene, a bit of me died.

On December 4, 2012, I drove to UAB (University of Alabama at Birmingham) to listen to my outcomes. I bear in mind sitting in slightly room for what appeared like hours ready for the physician and genetic counselor. When the door lastly opened, I knew my reply. It was written throughout their faces. But to listen to the phrases, “It’s not good news,” took the wind out of me. I confirmed little emotion whereas the physician was speaking. I simply nodded my head and considered sitting in that nursing house with my dad. I considered how I’d inform my youngsters. Would they too pray for my dying? I knew there have been many individuals ready for my telephone name and hoping for excellent news. I dreaded making these telephone calls.

For a number of weeks, I let it devour me, felt sorry for myself, and spent numerous time crying. But I knew there have been three individuals who trusted me, so I made a decision to make a lifetime of heartache right into a quest for hope. I joined a scientific trial by way of DIAN. I grew to become a volunteer for the Walk to End Alzheimer’s, which led me to turn out to be a congressional ambassador for the Alzheimer’s Association. I’ve traveled to Washington, DC, to fulfill with representatives and senators, advocating for extra federal funding for Alzheimer’s. I’ve been to the Montgomery statehouse. I’m now the chair of the stroll. I do not ever need my youngsters to see me hand over. I do not need them to really feel hopeless.

It is my hope that my story and the tales of others similar to me will begin a dialog and finish the stigma that comes together with this illness. Just perhaps I can convey a brand new face to Alzheimer’s so individuals know that it may possibly occur to anyone, not simply the aged. I do not know the place my story will finish. But I do know that I’ll by no means hand over hope for a world with out Alzheimer’s.

* * * * *

In the spring of 2021, I spoke with Carrie and deliberate a visit to Montgomery, Alabama, to {photograph} her and her brother Bryan.

Carrie informed 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 sickness — him and my youngest uncle are like Bryan and I, the identical distance aside in age — they went by way of it collectively. Because we did not perceive the signs of the illness, we had been actually embarrassed by our dad. We did not need our mates to be round him. We laughed at all the things he did and stated. It was foolish. It’s onerous to look again and suppose the final years I had with my dad had been me simply being embarrassed by him. He performed baseball in faculty. He performed minor league baseball for the Phillies. He did numerous nice stuff, however all that we bear in mind now could be how his life led to a nursing house. He weighed 70 kilos on a feeding tube in a nursing house.”

I asked Carrie how that experience informed her decision to become a vocal advocate and she replied, “I did not understand how the reactions could be, placing all of it on the market. Trying to interrupt that stigma. It actually helped me heal from the devastation of the information. I feel that it confirmed my youngsters that I’m not going to simply lie down and cry and do nothing. I’m going to attempt to educate individuals. Of course, I’m not an skilled on the illness in any respect, however I feel the perfect factor I ever did was to take a seat down and discuss with my youngsters, as a result of it impressed my daughter Hannah to need to do one thing 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 requested, “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 requested 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 homosexual. He by no means had youngsters. I’m the one one which had youngsters, which makes me really feel very responsible. I do carry numerous guilt for that, as a result of now all of them have a 50 p.c likelihood of growing it as effectively.

“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 do know the variations which can be taking place with me, and my youngsters undoubtedly know. They point out it. I do get flustered loads simpler than I used to. I used to have the ability to handle much more issues on my plate than I can handle now. Just little issues. I attempt to write all the things down in a planner, however then I neglect to take a look at my planner. I do have bouts of crying spells, which is bizarre for me, as a result of I’ve not finished that earlier than. I will not even know why I’m crying. I’m simply 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 are first recognized, at that second you suppose it is the top of the world and your complete life is crashing down. But it is the exact opposite. It’s given me a lot extra braveness and introduced me to fulfill so many great individuals.”

Bryan paused with a sigh and said, “I’m unhealthy at talking. Sometimes I battle at work. But I get by way of it. Pennies and nickels and stuff … the register … it drives me nuts! You know what I imply? If somebody is making an attempt to make use of a examine I’ve to ask for assist. I battle daily at work. But I nonetheless prefer it. I’m not superb on the laptop. I am unable to kind actually quick. Sometimes I lose my prepare of thought. I was the wittiest particular person within the room, however I really feel prefer it’s type of dimming for me. But I can nonetheless pull some jokes out.”

* * * * * 

Hannah Richardson was a sophomore in faculty after we met on the Washington University campus in St. Louis. I had beforehand interviewed and photographed her uncle Bryan (forty-one) and her mom Carrie (thirty-nine).

I requested Hannah about her household and her journey as a younger Alzheimer’s advocate and now faculty scholar. Because Hannah was so younger when her mother Carrie was first recognized, she needed to face the stigma and stereotypes of individuals dwelling with Alzheimer’s very early.

She informed 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 used to be simply shocked that somebody would even suppose that or say that to me. That pushed

me to observe my mother and attempt to be extra energetic within the advocacy realm and to teach individuals my age, I began volunteering with my mother, and I ultimately began my very own chapter of the Youth Movement Against Alzheimer’s at my highschool. It was actually empowering and it type of pushed me to need to do extra advocacy- and education-type work.

“It was such a surprise to see how little people actually knew about it, even into college.” I requested Hannah to inform me about her mom and the way she copes, and he or she informed me, “There have been moments the place I really feel so devastated and defeated by it that it actually 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 do not suppose she’s asymptomatic now. She nonetheless does. But in the previous couple of years, I’ve began to see these little indicators, and people little, delicate adjustments slowly occur. It was actuality hitting me within the face.”

I asked, “What are the little indicators that you’ve got been noticing, as a result of your mom and your uncle Bryan current very otherwise?”

Hannah said, “They undoubtedly do. My mother was asymptomatic till most likely about two years in the past. She nonetheless tells individuals she’s asymptomatic, as a result of no physician’s informed her she’s neurologically symptomatic. She’s not forgetting issues. She’s not having the identical issues my uncle is experiencing, however I nonetheless suppose she is, as a result of behaviorally she’s not the identical particular person she was. When I used to be rising up, my mother liked to be very social. She was at all times round her mates. She performed tennis. She had all these completely different pal teams that she frolicked with. She cared loads about her mates, and now she has no mates. She doesn’t see anyone.

“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 4 years in the past, that was not the case. If you attempt to convey that as much as her, she’s in full denial of it. It’s actually onerous, as a result of she’s undoubtedly interacting with different individuals very otherwise than she used to.

“When I’m going house and once I discuss to her on the telephone and I see these items, it is undoubtedly actually onerous, as a result of it is like my mother is not who my mother was once, and he or she does not even understand it or acknowledge it. I feel that makes it even more durable, as a result of if you happen to attempt to convey it as much as her, she denies it and thinks that I’m simply pulling it out of skinny air, however I’m not, and different individuals see it too. It makes it loads more durable to acknowledge and cope with it. I feel her method of coping is just not acknowledging it and never grieving it or being upset about it and simply not even making an attempt to consider it taking place.

“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 unhappy, and I’ve by no means heard her discuss that. I’ve needed to type of deal with these feelings and undergo that in my very own method, as a result of she wasn’t there. I did not see how she did it, and I did not see how she was doing as one thing to narrate to.”

I asked Hannah, “How did your loved ones’s historical past with Alzheimer’s affect your resolution to check drugs?”

“I noticed how to start with my mother did not simply shut down when she received her prognosis however

tried to be energetic in the neighborhood and attempt to educate others. That was actually inspiring to me, as a result of she did not simply sit down and take it. I need to try this as effectively, as a result of my mother’s at all times been somebody I’ve seemed as much as my total life, and I simply admire her power.

“When I used to be in highschool, I began going with my mother to her yearly visits at WashU and

seeing what the docs do. I informed them I used to be actually concerned with science, they usually’d let me go in throughout a few of her scans. They’d inform me in regards to the mind and stuff. It was actually cool, and I actually loved it. These persons are doing work that truly impacts individuals’s lives, and that is one thing that I actually need to do. I received actually impressed and thought ‘I need to go to WashU. I need to go into analysis. I need to do what these docs are doing and assist individuals.’ I simply targeted on that loads. It’s additionally a method to deal with what my household goes by way of. I can do that, and it’ll assist, and that can be one thing I will be doing that is proactive to assist my household and different households and everybody within the Alzheimer’s and dementia neighborhood.

“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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“The Day After Yesterday” by Joe Wallace

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