Ten People on Finding Out They Have the Alzheimer’s Gene
23andMe can test you for your genetic predisposition to lose your mind. Would you want to know?
In 2017, 23andMe began offering tests for the genetic risk of developing certain health conditions like celiac disease, Parkinson’s, and late-onset Alzheimer’s. The Alzheimer’s test will tell you if you have the gene variant APOE4, which means you have an increased likelihood of developing the disease. One in four people carry a single copy of the gene, but 2 to 3 percent of the population have two copies — one from each parent — and have a much higher probability. As with all of 23andMe’s upcharged “Health Predisposition Reports,” the sell on it was self-empowerment: Once you know, you can plan, allowing you to take charge of your well-being.
Except most experts don’t recommend that you test for APOE4 status. There’s no cure for Alzheimer’s disease and no surefire way to prevent it. Many people who find out they have two copies of APOE4 from 23andMe are left only with profound anxiety. Not taking the test in a clinical setting means that when the results come in, there is no doctor or counselor present to help process them or explain what can even be done with the information. Instead, there’s the internet: In Facebook groups and Reddit forums, APOE4/4’s, as they call themselves, try to help one another through their doom spirals. They parse scientific studies on the links between exercise and cognition and theorize about the protective benefits of fish-oil supplements and cooking with saffron.
In 2022, the actor Chris Hemsworth revealed in the National Geographic docuseries Limitless that he has two copies of APOE4, prompting a wave of interest in getting tested. Peter Attia, the longevity doctor who gave Hemsworth the news in the series, devoted a chapter of his 2023 book, Outlive: The Science & Art of Longevity, to the gene variant, proposing a series of lifestyle changes to manage your genetic risk — up your fish consumption, cut out alcohol, lift weights, hit the dry sauna four times a week — some of which are more speculative than solidly proved. Still, his recommendations are a mainstay of online-community discussions.
In May, Nature Medicine published a study that recommended reclassifying APOE4/4 status as not just a risk factor for developing Alzheimer’s but a clear cause — news that sent many 4/4’s spinning. Some plunge themselves into research, looking for methods to stave it off. Others compartmentalize (and philosophize) while trying to be present in their lives. Here, ten 4/4’s stories.
She worried that knowing too much could only hurt her.
Jane Kramer, 58, Scarsdale
My dad died of Alzheimer’s. He was about 73 when he became forgetful. He ended up living till just about 87, so it was many, many years of decline that I was witness to. When my older sister was 64, my niece came to me saying there’s something going on. I knew what was going on. There’s something called a MoCA test; it’s a classic test they give people to see where they are in their cognition. And the mini mental-state exam, I think it is MMSE. It’s like, “Draw a clock, make it be ten minutes after 11. Draw this shape. Here are three words, remember them. Now I’m going to talk to you and divert your attention for 20 minutes, then come back. What are those three words?” Things like that. I was with my sister when she took this test and she failed miserably. It was probably one of the saddest moments of my life.
When this all happened, that made me go, Uh-oh, I am screwed. These are two first-degree relatives now. When I got the genetic results, I 100 percent freaked out. I became mentally fatalistic, was drinking more. I have always been quite healthy in my life, and I thought, Oh, I’m ruining things.
The kind of person I am, I decided, I’m gonna find every clinical trial there is. I managed to get into the Weill Cornell Alzheimer’s Prevention Clinic and started getting blood work and cognitive testing every six months. I signed up for some clinical trials I knew I would never participate in, just to get tests because you can’t get certain tests otherwise. I got free MRIs. I got free plasma-biomarker tests. I participated in the Women’s Brain Initiative with Dr. Lisa Mosconi, who’s a bigwig. There’s a new drug that’s in an extended phase-three trial, so I’m in touch with the head of that drug company. I have no shame. There was a press release and the guy’s email was on it, so I’m like, “Hey, how’s it going? I’m wondering if you’re doing any prevention trials.”
I did all these studies for years. Then I was going to get an amyloid PET scan and I stopped. I realized I didn’t want to know if I had a positive amyloid PET. I was like, You’re just trying to hurt yourself by knowing too much.
My sister is 70 now and is about to go into hospice. It’s been a fairly fast decline. She doesn’t know who anyone is, speaks babble, and it’s really bad. As I get closer to the age of my sister’s diagnosis, I get more stressed out. As you get older, there is normal forgetfulness sometimes, like when you don’t get enough sleep. So I ask my nieces, “What were the first signs you saw in my sister?” I want to know what made them think it wasn’t just forgetting. It’s a learning experience every day: How do I filter what’s normal from what isn’t normal? I did have an MRI again recently, and I could compare it to my first one, in 2019 — I always ask for the disc and everything so I can compare. My brain is still the normal volume; my hippocampus is still the right size. I remember seeing my sister’s MRI when she was diagnosed, and her brain was like half the size of her head. So that makes me feel better.
If I think about it too much, I get scared. When I see my sister on FaceTime, I get really, really sad. I don’t have kids, but I’ve already given my nieces permission not to come visit me because it’s too upsetting. One question I have is, Do I have enough money to not have to be thrown in a home? I’m married to a nurse practitioner, and she’s a planner. She wants to know how much I wanna be taken care of. Like, “How much intervention do you want?” There’ve been fights about it. I want to be taken care of properly; I don’t want to be left in my own shit or fall down and hurt myself. But could she maybe — and I’m okay with this — not force me to eat if I don’t know what eating is? That comforts me because I know that starving to death is not painful, right? If I lose the hunger mechanism, if I don’t know what food is and it’s sitting in front of me and I don’t know what to do with it, she’s not gonna put it in my mouth. I think her knowledge will create a much more humane situation at end of life for me, if that’s the case. I don’t know if I’m brave enough to go and do an assisted-death thing. I’m chicken about that stuff.
He had a hard time finding a doctor who would take him seriously in his 30s.
Jake Petersen, 33, Los Angeles
I signed up for 23andMe because I was more interested in questions like “Does cilantro taste bad to me?” I didn’t give the genetic risk much thought. Then I read the Peter Attia book. All of a sudden, I got extremely nervous.
I felt like a train had hit me.
I went into full research mode. Nights, weekends, I had a Google Chrome window with 80 tabs on it, bookmarks out the wazoo. In this time, I’ve learned how to read scientific studies, and I’ll use ChatGPT to digest a lot of them when I can’t understand. As someone in their 30s, I’m not really finding any resources available — I guess it’s in none of these studies’ interest to put someone in the study in their 30s because they’re not going to find out the results for, what, 40 years?
I consider myself extremely lucky and extremely pleased that I found this out. Alzheimer’s is something that’s starting in my brain now. The plaque — these buildups are happening in my 30s, right? I want to change these odds as much as possible. I’m optimistic, but I hear this clock ticking in the back of my head.
I’m not overweight. I do cardio. I do HIIT, I do Barry’s Bootcamp. I’m not a net risk factor. But I think for me, the first step was, Okay, Jake, you need to get a doctor that’s going to not laugh at you when you bring this up and say, “You’re 30, don’t worry about it. You’re healthy, you’re fine.”
So I ended up joining Forward, a membership health clinic. They talk about medicine 3.0 and use software to track your health and vitals over time. From reading Peter’s book, I started to understand the litany of tests I wanted to get done. An APOE4 carrier does have challenges with cholesterol and processing lipids. We have a pretty high family history of cholesterol; everyone’s on a statin. So I did an advanced lipid panel: It shows your ApoB, your density of particles, how much small dense LDL you have. That one’s the worst — it’s more likely to cause issues in both cardiovascular disease and with Alzheimer’s because essentially Alzheimer’s is partially a lipid-transport disease. The panel showed that my LDL is a bit high, but looking at the ApoB and the small dense LDL, I’m somewhat close to off the charts. I’m probably going to have to go on a statin in the next couple of months.
I started doing a lot of research into different scientific studies. I have a note on my iPhone Notes app that’s superlong: I add everything I’m learning so I can reference it when I talk to people or talk to doctors. For me, the knowledge is comforting. My cousin got married in May; it was a big family wedding, and I shared Outlive and the chapter on Alzheimer’s with my entire extended family. I’ve asked my cousins, “When was the last time you got your cholesterol checked?” I’ve become the nutty cousin.
She used to be “a very, very social person.” Now she’s afraid to be away from her kids.
Anonymous, 41, New Jersey
My father is very into genealogy, so on a whim, we did 23andMe. At some point, I logged on and it said, “We’re now testing for the Alzheimer’s gene. Click this button if you want these results.” And I was like, Okay, whatever. So I clicked it. I didn’t think much about my results. Then a couple years go by and Chris Hemsworth started talking about this, and I was like, Oh my God.
I pretty much had a nervous break. I’m a person who runs a tight ship: I’m always getting a million things done, and it was alarming for my husband because he’s never really seen me so emotional. I was crying a lot, and I wasn’t eating. Everything I was reading about APOE4 talks about the plaques on your brain, which they say you can prevent through fasting and maintaining a certain diet and being thin. I don’t know if it’s even healthy, but I became hyperfixated on being thin so I don’t cause plaques on my brain.
Every day, I wish I could go back, that I had never found out this information. Knowing my APOE status drives my entire life. I used to be a very, very social person. I have lots of friends, I would have wine nights with them, I would go out every weekend. My kids are 12, 9, and 7, and it’s not like I didn’t spend time with them — I just had an active life outside of them, too. That has significantly declined. Now I don’t like to leave my family. I don’t want to be away from my kids. I don’t want to miss anything with them. I only work two days a week now so I can be with them, go to all their sporting events, and drive them everywhere. I’m also constantly stressed about going out and drinking because I know drinking alcohol can cause plaques in your brain, too. I do feel like knowing this status has changed who I used to be. So much of my identity now is how my kids do, and I don’t know if that’s healthy, either. But I get so upset because I feel like I’m going to miss out on all their lives.
A couple months ago, I tried to get long-term-care coverage because of all this. We found a really solid plan — I was giddy with excitement because it would provide exactly what I was looking for. It was hard to even explain it to our financial planner because it’s a weird request for somebody to make at 40. This is a policy people take out in their 60s. It was going to cost us an insane amount in premiums: $100,000 over the course of ten years. No normal person would pay it, but my husband was willing to because we knew it’d provide me complete peace of mind. Like if something does happen to me, at least there is a plan in place for me and my family. I didn’t disclose to the insurance company about the 23andMe stuff or the APOE genes because then I would never have gotten the policy. But I ended up getting denied for the plan anyway because I’m too thin.
The foundational question about this type of genetic testing is whether it is actually beneficial to people. I was frustrated with 23andMe because they’re giving you such heavy information with no context, no background. It’s like somebody telling you you’re gonna get cancer and then that’s the end of it. Let me tell you, with this information, there are no resources for me. If it were a breast-cancer gene I got, I would just go get surgery and take my breasts off. There would be a plan. With the APOE4, I could barely get an appointment with a neurologist. They did not want to see me unless I was having cognitive issues, but I’m not because I’m only 41 years old. I reached out to 23andMe because I was having so much anxiety, and I also talked to an independent genetic counselor. They said to me that their results are not 100 percent accurate. Their results could be wrong. I could be making myself sick over this, and this might never even happen. If you do retest, then that becomes a part of your medical history. Health insurance can’t deny you because of these things, but life-insurance and long-term-care plans absolutely can. Once it’s in your chart, it’ll haunt you forever.
Her test results made her decide to become a mother.
Charlotte, 34, New Haven, Connecticut
I have an autism diagnosis: ASD1, which has the lowest support needs. I was in school and just trying to manage my life and my executive dysfunction. That was my overall issue: not feeling capable of brushing my hair and taking a shower and going to school and going to work in the same day. So I was looking into genetic testing to see if, aside from just being highly medicated, there was some way to help long term. But the only interesting thing on my genetic testing was the APOE4 genes.
I felt like there was some mystery to be unlocked — like I could figure out if I just Googled enough. I started getting certain supplements and going to the sauna all the time because they said the heat-shock proteins are supposed to clear out the plaques in your brain. I did some cryotherapy. I started growing lion’s mane, which is supposed to have neuroregenerative effects; I sourced a log to put in my backyard, which I inoculated with spores. Then my friend who’s a researcher made a comment. He said something like “The reason self-help books and these podcasts are so popular, especially in America, is because they give us the illusion of control and productivity, even if there isn’t really.” And my explosive problem-solving process was just more to feel like I have control of my destiny than that I actually gained control of anything. I grew up on a farm and we had working dogs, and if they’re not doing something, they’re tearing up the couch. It felt like the same energy: all these people having to put their energy toward something even if it’s not “the Solution.”
I will say that knowing my APOE4 status changed the trajectory of my life planning. Before, I didn’t know if I wanted kids. Then I think I just softened toward the idea of having a family because if my life is gonna be short anyway, I just wanted to give part of myself while I still have it. I was going to school and was pretty focused on doing something in the medical field; I was taking some premed and nursing classes. Now the timeline was shortened a little bit. If it looks like I can only successfully work until I’m 70, then will I have enough time in my 30s to finish a minimum eight-year education, then pay off student debt? How much time do I even have to accomplish this? I’m taking a break from school now, but if I were to go back, I’ll probably focus on something that utilizes mind power, so I can stay sharp, but that won’t require taking on as much debt because I don’t know how much time I have to pay it off.
You know what’s so weird? After getting my results, I actually started being nicer. I was always very shy and really reserved, and I would be grumpy toward anybody that was, like, trying to be nice to me, maybe because I didn’t feel like I had the bandwidth for it. But I’ve almost started taking myself less seriously, maybe almost in a self-preservation sense. Because if I’m gonna be really grumpy and unpleasant and crazy and have no faculties in, like, 30 years, I’m gonna need a community. This is something I should start preparing myself for now.
I just had a baby. I’m 34, my husband is 38. If this affects me around 75, then my kids would only know me until they’re my age and my husband’s age. I just want to make sure I’m as good to the people around me for as long as I can be, until I can’t be.
She revealed her APOE4 status on a date with a doctor, thinking he’d be chill about it. He wasn’t.
Rebecca Haddad, 34, Pittsburgh
When I was in school to be a physician’s assistant, I was in a working group and our discussion topic was the ethics of take-home DNA tests. You’re opening Pandora’s box and giving these tests to people who don’t have a good grasp on where to fit these answers into the puzzle of their whole life. You could get a negative DNA-test result and be like, Oh, like, I’m in the clear, not go to your preventive appointments, and have this false sense of security. But at the same time, you don’t want to live your life just so terrified of something that’s so out of your control. In my group that day, Alzheimer’s specifically came up. Everybody was saying, “Oh my God, I would never want to know.” And I was just sitting there like, “Yeah, man, that’d be really terrible,” knowing full well that I already had this information.
When I first got my results, I made a choice. I don’t want to live my life so tied up in this genetic finding. I could live my whole life taking choline and all these supplements and I could still get it. Or I could do none of those things and never get the disease. Or I could get hit by a bus tomorrow on my way to work.
About six months ago, I was dating a doctor at my work. I told him about my APOE4 status because I thought, of all people, he would understand what this test result meant. I thought he would be like, “Okay, it wasn’t a big deal.” But he had this very overblown reaction. He was like, “That’s an early Alzheimer’s indicator. You need to go to a geneticist and get this testing done.” It was devastating — not because I wanted that relationship to continue, but his reaction almost validated these huge scary feelings I’d had about it when I first got my results.
She thought she could stall it by modifying her diet. But that backfired.
Donna Dorans, 70, Agawam, Massachusetts
When I found out, I was sort of numb. Then I started researching. Googling. I’m an occupational therapist, so I understand a lot of medicine and I was looking at the real details of what happens to the brain. I became very anxious. My family thought I was going crazy. With the APOE4, what happens is that eventually you have problems with glucose in the brain. So I started changing how I ate. Ketosis is recommended by a lot of people. So I started cutting out a lot of carbs.
What was going through my head was, If I’m not going to prevent it, maybe I can stall it as much as I can. I have to follow this protocol. It backfired. Some of the diets are so restrictive that you start eliminating things you probably shouldn’t. I had started losing weight because I was trying to cut back on carbs, but I’m a small person to begin with. That’s not healthy for muscles, and at my age, you start losing muscle mass. I used to drink a lot of milk, but I was also trying to cut back on dairy and trying to get calcium through other foods, which I later realized wasn’t good for my bones. Small people are more at risk for osteoporosis, which I did develop. I was never a big red-meat eater but would eat some here and there; then I stopped and later learned I wasn’t getting my iron. I started eating a lot more vegetables, but if you eat a lot of certain vegetables that are cruciferous or raw, it can interfere with your thyroid. I started having thyroid trouble. I wasn’t getting enough iodine because of the way I was eating.
I’ve learned the hard way that what’s supposedly healthy isn’t always as healthy as you think. I tried to add some stuff back into my diet. Still, my biggest fear is that it’s going to start soon. There’s times when I think, Oh, is this it? But so far, it hasn’t yet that I know of.
Now, when he can’t remember something, he dwells on it until he does.
Brett Memsic, 39, Los Angeles
The biggest way this has affected my day-to-day life is my paranoia about forgetting things. From the time I was in high school, I felt like I remembered everything almost photographically. But now my friends will remember stories from a couple of years ago or quotes from movies that I don’t. When things like that happen, I spiral a bit more. If I can’t remember something, I dwell on it for like 12 hours until I do. In conversations with my fiancée, I’ll get stuck on trying to remember everything and bring her into it; we can’t advance the conversation and talk about something else until I remember it. It’s a constant thing in the back of my head whenever I forget something or whenever I don’t remember something immediately: Is this happening now or sooner than normal? Is it a linear thing where I’m actually like 15 percent impacted by this and just don’t know it yet?
In general, I’m pretty nonreactive to bad things happening. I maintain a similar baseline. But Monday, May 6, 2024, was a turning point for me. In my last couple years after getting the test, it was like, Well, this thing exists, but there was enough deniability or enough of a likelihood that I wasn’t gonna get it. What was so scary about this study the New York Times wrote about that Monday was that there’s potentially a causal link between the APOE4 allele and Alzheimer’s, and it may be more of a guarantee. It made it a lot more real. My fiancée and I had a conversation where I broke down a bit because it’s like, “This affects you a lot, too.” We’re getting married in October. Later, I mentioned my APOE4 status to one friend and he joked that my fiancée still has a couple months to upgrade to a better model.
She dove into “all this Wild West type of care.”
Patricia Avvocato, 61, Rye Brook
When II read the genetic test, I was not surprised. Most of the women in my family have had a history of Alzheimer’s before dying. It was never diagnosed officially because they never went to doctors.
At first, I brushed it off. I said, Well, I’m doing everything that I know you have to do for brain health already. I manage my sleep, my diet, and I always exercise. I’ve never had junk food in my life. What else is there to do? Why torture myself?
I was in my 50s, and around that time I was more interested in making sure I did not go into menopause. It is very funny how I had never put the two together. I just wanted to have vigor and vitality. I found a rheumatologist, who put me on bioidentical hormone replacement. When I told him my APOE4 results, he said, “Well, you need to go on rapamycin.” It’s an immunosuppressant that, at normal dosage, is used to prevent rejection of organ transplants and is used off-label for many things, including neurodegenerative diseases.
He put me in contact with this man Alan Green, in Little Neck, Long Island, who’s in his 80s. And he agreed that I should go on rapamycin. So I’ve been taking that for about five years. And I’m in all this Wild West type of care with certain doctors who are into regenerative medicine, both here in the United States and in Colombia, where I go to visit my mom about three times a year. They don’t have so many restrictions there, so I’ve been able to tap into unapproved treatments.
I have a daughter who’s 31 years old. I am a great believer that, if I do go on a path where there is no way to end my life with my brain intact and being able to live an independent life, she can terminate my life. I’ve seen the deterioration. My mother’s mother lived with her until she died, and she could barely go from one place to another in the same apartment. It was just very, very sad. It’s been shown that caretakers actually start aging faster than the people with neurodegenerative diseases just from caring for them. My daughter will have a power of attorney to take me to Dignitas in Switzerland and terminate my life.
These days, I don’t rush anymore. I used to be always anxious that I needed to be at a certain place at a certain time, and I’d do too many things. I was working too many hours. I would exercise only on the weekend. Instead of working five days a week, I’m working three days a week now because then I wanted to dedicate more time for exercise, for relaxing, for meditation. If something doesn’t get done today, it doesn’t get done.
After his mother’s test results, he tried to convince her to eat better.
Miguel Delgado, 30, Los Angeles
After I found out I carried two copies of the gene, I started preaching about it to my family. I told my mother and brother, “Hey, it’d be nice to know if you are at risk of any diseases.” It turns out we’re all three double-E4 carriers. But I don’t think my family realizes what it means.
My mother’s a very religious person. I don’t know if she believes in genetic predisposition. I’m sure she does to some degree, but I feel she’s much more of a “Maybe we can pray and make sure we don’t carry them” kind of thing. It’s just that talking about death is taboo in a way; it seems like you’re speaking it into existence.
She had a mini-stroke last year. We never got a diagnosis, but I think that’s what it was. So it gets me a little worried. She doesn’t eat well. Money makes a difference, right? Since she works a manual-labor job — she’s a quality-control inspector at a pork factory — she comes home and just wants something easy. Fast food or whatever, it’s easy to grab. She’s very much a daily bread eater, like your classic Mexican bread, very sugary, heavy on carbs. She drinks a lot of Coke. So I’ve been trying to … I wouldn’t say scold her about it, or maybe I do. I try to explain the severity of it and how she needs to take better care of her body.
My mom’s big thing is being self-reliant. So I try to convince her by saying that if she were to get something like this, that would take away from my brother and me because we’d have to care for her. I’m pretty hopeful. Luckily, she is fortunate enough that she could afford the salmon. She never ate salmon before. I got her eating salmon at least once a week now. So it’s an improvement. I even bought her Peter Attia’s book in Spanish, and I think she got through two chapters of it. She said she wasn’t training to be a doctor or something.
My dad hasn’t given me a definite answer on why he doesn’t want to take the test. For a while, at least for a year, I was bringing it up every once in a while. But at the end of the day, even if I do find out if he has it, it doesn’t change my genetic makeup, unfortunately.
She’s trying to create good memories now — and avoid making bad ones.
Jane Bailey, 74, Litchfield, Connecticut
My whole life, I’ve known about dementia. When I was very young, I heard stories from my mother about my grandmother. I never met my grandmother; she died of dementia when I was only 3 years old. My mother said she probably had Alzheimer’s but they didn’t know a lot back then about Alzheimer’s. She ended up in an institution. Then when I was in my 30s, my mother’s sister was starting to suffer from Alzheimer’s. And then in my 40s, my mother-in-law developed Alzheimer’s.
She’s not related to me, but it was through the experience of seeing her degradation that I realized how awful a disease this is. She had always been a very organized and very elegant person, and she had set aside boxes where she had labeled what we were going to get when she died, like, “Jane and Steve get the crystal and so-and-so.” When the Alzheimer’s developed, we knew she was going to have to go into a home, and we got those boxes of things that were labeled for us. We got the crystal and put it on our credenza. One day, she came to visit us when she was going really downhill, and she said, “You stole my crystal.”
“No, Mom, we didn’t steal your crystal,” we said. “That’s what you gave to us.”
“No, I wouldn’t have given away my crystal.”
We would have to seat her so that her back was to the credenza so she wouldn’t see the crystal and get triggered. It was the change in personality that, above all else, was very, very hard to look at: When my mother-in-law eventually died, in 1999, I couldn’t even cry because she had really died a couple years before. Then my mother was diagnosed in 2008.
Two years after she died, in 2015, my daughter gave me a gift of 23andMe for Christmas. The report told me I had two copies of the gene. I was 67 at the time. By age 75, the general population has a 3 percent chance of developing Alzheimer’s, but I would have a 28 percent chance at my age pretty much right now. I’m 74. And then for women at age 85, it jumps to a 60 percent chance versus a general population with a 14 percent chance.
I didn’t feel bad about it. It was a blinking yellow caution light: Watch out, you’re getting older. I wanted to be armed for a battle. I could see from watching my mother-in-law and my mother that they would lose a sense of time and not know what to do. So I said, Okay, I have to develop a really good habit for putting my keys on the hallway table. I can’t put them anywhere else. I have to sleep for eight hours. I have to eat healthy. I have to do less multitasking. I always would join whatever club or organization I join and was always willing to take on a leadership position. Now, I just want to relax a little. I used to be on Facebook a lot more, and now I just feel like I don’t want to waste my time on that. I’d rather read or play Scrabble with my husband. Routines are more important. But I don’t know how much of this is related to APOE4 and how much is just related to being 74.
If I were honest, I feel it’s probably inevitable that I’ll develop Alzheimer’s. But no one’s losing sleep over APOE4, least of all me. My son says, “Oh, Mom, you seem fine. I’m only 33, and I’m already forgetting things.” My husband will say, “Don’t worry, I’ll just call the white coats and get someone in to do my laundry and cook my meals.” I think, Okay, if I were to lose my memory, what is it that I want my family to do for me? I want them to understand that I need to be talked to softly. I want music that’s quiet. I want somebody to read me poetry, maybe.
As she went into heavier Alzheimer’s, my mother got sweeter. More relaxed. She seemed able to live moment to moment and not worry about what she could remember or what she couldn’t. While my mother-in-law was like, “I need to remember this,” and yet couldn’t remember, my mother was like, “Oh well, I can’t remember it.” She didn’t seem to fight it.
Now, I keep saying two things to myself. One is to create good memories now and don’t make bad memories. Make good ones because that’s what’s going to be there and you want them to get into long-term memory. Now, I’ll consciously say to myself, This is going to be a good memory. Wow, this is a great day. I have to remember this one when I’m old. But I also say to myself, Just enjoy the moment. Don’t worry about whether it’s creating a memory or not. I guess what I don’t know is, Does appreciating the moment-to-moment require memory? I will say, right now, that when you really focus on a moment, it often bridges to other moments.
For example, right this second I’m looking out my dining-room window and I see a beautiful forsythia bush that’s in full bloom. I can’t look at it without seeing my sister and myself 50 years ago. When I was probably 8 years old, my mother took a picture of us in front of a forsythia bush at home in Staten Island. Today, I’m looking at this one, and I say, God, that’s a gorgeous forsythia bush. But it’s more than that. It’s also the memory that’s embedded in it.
Correction: The print edition of this story incorrectly credited the portfolio’s photographer. It is by Dina Litovsky.
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