In January, I spent a whole session telling my therapist how well I was doing: I had a fulfilling daily routine, felt energized by my writing projects and was excited to continue riding the positive momentum. I thought I had it all figured out, but hubris always comes with a price.
On February 1, several of my coworkers were abruptly let go and I was moved to another team to pick up the work of a few writers who departed. I have mostly the same job, but under a new boss, in a new-to-me organization with completely different playbooks and processes.
I felt a mix of whiplash, survivor’s guilt and indignance over not having a say in the situation. All the while, the voice in my head chided: Be grateful. Other people have it worse. You don’t deserve to feel anything negative about this.
I’ve spent the past several weeks finding my footing and am still working on it. The sting of sudden change has calmed; the chaos of being thrown into an unfamiliar role has subsided. Everything is going to be okay.
And then.
Last week, my mom’s hospice social worker called to tell me she had gained weight since her last recertification and was going to be discharged. My mom initially qualified for hospice last July due to malnutrition. Even though she started eating well after that, she was recertified for hospice multiple times because her weight stayed the same. Now that she’s gained a few pounds, she no longer qualifies.
Enrolling my mom in hospice was upsetting, but I was blown away by how effective and communicative our hospice team was and grew to appreciate them as an invaluable asset while we navigate this final stage of my mom’s illness. When I suspected my mom had an eye infection, hospice sent someone ASAP to examine her and prescribe antibiotic eye drops. When my mom was having trouble with her feet, hospice sent me a list of traveling foot nurses who could come see her. When I requested a wheelchair because the one her facility put her in was broken, hospice had a new one delivered the next day. A nursing assistant visited once a week to give my mom an extra shower, and she’d take the time to dress her in nice clothes and accessories and send us photos. Our hospice team made my mom a priority and improved her quality of life. To lose them now feels like a gut punch.
It seems wrong to say that my mom “graduating” from hospice is a bad thing. Who wouldn’t want their parent to take a step back from the precipice of certain death? But she’s more or less in the same place, just with less support.
My mom is not getting better in any meaningful way. She is significantly worse now than she was last summer in that she now spends 98% of her time in a wheelchair due to her frequent falls. That doesn’t matter to Medicare, which pays for hospice, and she seems a way out from requalifying, whether it’s for malnutrition or dementia. But she inevitably will, and I’ll travel with her to the edge again.
The voice in my head continues: Be grateful. Other people have it worse. You don’t deserve to feel anything negative about this.
I’ve struggled to find a way to describe the way I’m feeling about these things that are kind of bad, but not that bad, and also not necessarily good. It’s not an emotion that rings clear like sad or angry or helpless, although it often comprises one or more of those.
Finally I heard on a podcast the word that sums up my world lately: destabilized.
I’ve written before about feeling like I’m on Rollercoaster Road with all its twists and turns. Now I feel like I’m traveling it on a unicycle, desperately trying to keep my equilibrium. It’s been windy lately. I’m still moving forward, but struggling to find stability.
My therapist is also on leave right now, so I’m having to spot my own mental gymnastics through this.
Here’s what they would probably say to me: You are allowed to feel sad, angry, helpless and destabilized. You don’t have to be grateful; no one is keeping score. You are feeling arbitrarily shuffled around and abandoned and those are hard things no matter the circumstances. It takes time to find your equilibrium after major changes and you don’t have to rush it. Feel your feelings, and take good care of yourself.
Sunday was my mom’s last day in hospice care. We visited at her old home and she suffered a fall that included hitting her head on a wall, leaving a serious dent—in the wall, not her head. She seemed to be totally fine, but Don and I were terrified. I almost grabbed my phone to call 911, but remembered I would call hospice instead, since my mom has medical orders to only receive comfort care—not life-sustaining treatment—in the event of a serious injury.
If something terrible happened now, who would I call? My mom is in a liminal space: not sick enough for hospice, not well enough to be saved. A lost soul caught in the in-between. It feels like Don and I are floating, untethered, in that space with her. We have only each other to hold onto.
My EMT friend sent a kind message explaining I can absolutely call 911. First responders can administer first aid, then help navigate where to go from there. If my mom sustains a serious injury, it would likely trigger hospice eligibility and they would take over—a small comfort in an awful situation.
It amazes me how much it helps to name my feelings. It helps to write about them and release them, to the extent that I can. It even helps to be my own fake therapist, though I can’t wait for mine to come back.
The sting of sudden change will calm; the chaos of being thrown back into an all-too-familiar role will subside. Everything is going to be okay.
On New Year’s Eve, I deleted Instagram, Facebook, TikTok and Reddit from my phone and resolved to take January off from social media.
I found myself spending hours a day on these apps, endlessly scrolling in search of… what? Staying so up-to-date on other people’s lives and constant commentary left me feeling empty. I resented the nagging drive to share content on Instagram Stories, and the guilt I felt if I didn’t post about something — a friend’s party, my daughter’s dance recital — in a timely manner, or at all. I wanted to shut down my virtual world and live entirely in the real world for a month.
The first few days, I compulsively picked up my phone whenever I wanted to procrastinate from working, and it took me a second to realize I didn’t have any of my go-to apps to open. Instead, I checked the weather a lot. At any given moment, I could tell you the exact temperature and when it was going to rain next. I allowed myself to scan the headlines of People.com to get my celebrity news fix, and to Google Taylor Swift to see what she was up to. I also gave myself unlimited access to the New York Times app so I could read news stories and, you know, learn stuff. I don’t get sucked into those resources or lose hours to them over the course of a day like I do with social media.
Soon I reached for my phone less and less often. Instead of opening it, I’d just click the side button to see if I had any texts or missed calls. If not? Back to work, or whatever else I was doing.
My 9-to-5 window became way more productive. I got ahead on my work and had plenty of time to exercise most days at lunchtime. In my off time, because I wasn’t concerned with what everyone else was doing, I had the mental space and clarity to think about what I want to do.
“If you stop seeing yourself, you stop being yourself, and then you can’t create the thing that’s the most resonant that only you can create.”
Jon Batiste on “Armchair Expert”
I feel more like myself than I have in a long time, and I’m excited to have the time and motivation to create. My goal in 2024 is to write and submit at least one essay or article each month for publication somewhere: a newspaper, magazine or website other than mine.
I wrote two pieces in January and have good ideas for a third and fourth. I submitted one piece and got my first rejection, which just put me one “no” closer to a “yes.” I reworked the piece and submitted it elsewhere.
I’m really excited about the second piece, but need to hold onto it until the time is right. If I can’t find a home for it, I’ll eventually publish it here. That’s the great thing about this goal: The only thing I stand to lose is a bit of ego, and nothing I write will go to waste. I already make a living writing, so I don’t need the validation of getting published to know that I’m a good writer. It would just be icing on the cake; a bit of life extra credit.
Even though I don’t have an objective win yet — that is, a published piece — I’m riding a high from accomplishing what I wanted to do in January, and I’m driven to keep going.
I’m not eager to reinstall any apps to my phone. When I do, it’ll just be Instagram, and I’ll turn off push notifications. I want to use it mindfully, not whenever the app tries to suck me in. And I’ll probably mute or unfollow a bunch of accounts. There’s just a handful of people I found myself wondering about in January, and I only want to spend time keeping up with those I’m truly invested in.
***
I also set out to do Dry January — no alcohol for the entire month. I always enjoy a reset after the boozy holiday season. This time I made it to January 15 — Martin Luther King Jr. Day — when Evie and I went with another family to the Pacific Science Center, then found ourselves at the top of the Space Needle taking in a gorgeous 360-degree view of Seattle. The other mom — my friend Kyra — was going to get a drink from the bar, and I thought it sounded pretty fantastic to watch the sun start to set with a bit of sauvignon blanc in hand. We toasted to being Dry January dropouts. (At least the wine was dry!)
I enjoyed it without guilt. Because I’ve done Dry January many times before, I don’t need the validation — again! — to know I can do it. Now the goal is more about drinking mindfully and not falling into a pattern of drinking more than I really want to just because alcohol is around. I enjoyed three more drinks in January, each time while I was out doing something fun with people I love.
When it comes to what I put into my body, moderation and intention feel good and healthy; rigid restriction does not. I want to be in control of my life, but also to enjoy it. I know all too well that it can be much too short.
If you’re a Dry January devotee, good on you — especially if it’s the first step on a path to sobriety. But if you enjoy drinking in moderation, consider Damp January (or February, or whenever). Shift the focus to intention, and don’t worry about failing at an all-or-nothing goal.
I’m lucky and grateful to be able to have one drink, enjoy it, then stop. (This was not the case in college, but luckily I grew out of that.) I find Instagram to be far more addictive. Is it a thing to be social-media sober? I’m not willing to entirely give up on sharing photos and keeping up with online friends, so I’ll work to find a balance.
***
I’m sure some people thought my unexplained absence from Instagram meant something happened with my mom, but she’s still with us and nothing much has changed. She has been re-certified for hospice a second time and seems just a little worse every time I see her. I’m moving forward with life and even have a few trips planned this year; I’ve given up on planning for the unknowable.
Less drinking. WAY less scrolling. Much more writing. That’s my 2024 so far.
The holidays are a tricky time for many people, for so many reasons. I learned from last year’s heartbreak to go into this year’s celebrations with zero expectations. The result: a happy Christmas with my mom, who smiled all evening.
Last year, I gave her a fleece blanket printed with family photos, and she had no reaction at all when I helped her open it. This year, I put my energy into making something she could still enjoy: Julia Child’s bœuf bourguignon, a dish we made together for Christmas dinner in 2010. It’s a labor-intensive endeavor with incredible results.
At 23, I needed my mom’s guidance to make it. It felt good to work my way through the steps we once followed together and realize, at 36, I am more than capable of doing it on my own. Her gift to me then, my gift to her now: a dish filled with love and endless patience, made richer over time.
The night ended in tears all around because we knew this might have been her last Christmas. I hope it was. I would have been ashamed to say that once, but I say it with my full chest now. Nothing good awaits. I would love for my memories of her enjoying this Christmas to be the ones that endure.
I go through periods where I’m unable to read about others’ experiences with dementia because I don’t have the capacity to absorb anyone else’s pain. Other times, like now, I feel nourished by seeing my darkest feelings reflected on the page. “Dementia sucks you in with a terrible centrifugal force,” Suzanne Finnamore writes in her new book My Disappearing Mother. “It puts you in the position of wishing your own mother dead.” On top of the emotional agony of watching a parent wither away over many years, the shame around having feelings like this is unbearable. I vow to leave it behind in 2023.
I love my mom and I wish for her suffering to end. I am a good daughter and I will be relieved when she dies.
Dementia is an endurance sport, and right now feels like mile 20 of a marathon. The toughest bits stretch far ahead; the finish line keeps moving, and a different pain awaits there. I will do whatever it takes to continue on, side by side with my mom.
At 23, I needed her guidance. At 36, I am more than capable. My gift to her now: a journey filled with love and endless patience.
Four years of grieving what was and accepting what is.
When I’m with Janet, I wonder where my mom is. She might wonder the same about her daughter.
When I dropped her off on Saturday after a visit at her former home, I hugged her and told her I loved her. She politely replied, “Thank you for having me over today,” like she would to a neighbor she doesn’t know very well who randomly invited her in for tea.
I hope her daughter still exists in her mind as someone younger and more carefree, with fewer grey hairs and fewer hurts. I wish I still existed that way, too, but I accept what is.
If she doesn’t recognize me as her daughter and I don’t recognize her as my mom, we are virtually strangers. We are linked through blood and birth, but as if in a past life.
Aaron and I watched the film Past Lives on Saturday night (potential spoilers ahead). In it, Korean childhood sweethearts Nora and Hae Sung are separated by a move and reconnect intermittently throughout their lives. They know each other so well from their younger years, yet are strangers as adults. They seem destined to be together, but as they grew up, their paths diverged in such a way that makes it nearly impossible.
The concept of in-yun is woven throughout the film. Nora explains: “It’s an in-yun if two strangers even walk past each other in the street and their clothes accidentally brush, because it means there must have been something between them in their past lives. If two people get married, they say it’s because there have been 8,000 layers of in-yun over 8,000 lifetimes.”
At one point, Hae Sung wonders if they are currently experiencing a past life, and what will their relationship be in the next?
The film is gorgeous and heartbreaking; the perfect example of holding many opposing truths at once, and of grieving what was and accepting what is.
I don’t know if in-yun applies to mothers and daughters, but I do know my mom and I have left our marks on each other. I hope it’s enough.
It comforts me to think that, while her body remains here on Earth, my mom’s spirit—the very essence of her that I’ve watched gradually fade away over the past four years—may already be somewhere between this life and the next, waiting to know me again.
When I launched my Alzheimer’s Association fundraising in April, I declared my intention to run a PR in New York City. “I ain’t flying across the country for a fun run!” I wrote.
Well, life happened, and I indeed flew across the country for the most fun run I’ve ever done—and I wouldn’t have had it any other way.
I jumped into training at the beginning of July with speed work, strength, the whole nine yards. I was determined to make this my best training cycle ever. But a few weeks in, I went for an easy five-mile run with my friend Hallie and noticed my right knee wasn’t tracking properly. I stopped to stretch, thinking it was due to a tight muscle. I was able to complete the run without pain, but my knee still felt off.
This strange feeling continued for several runs until July 26. Five and a half miles into a six-mile run, I felt sharp knee pain and immediately stopped to walk the rest of the way home. My knee felt fine just walking; it was the impact that made it hurt. The next morning, my knee started clicking and popping frequently—but painlessly—with normal movements when it never did before.
I visited my chiropractor hoping he’d be able to fix me, but he recommended I see an orthopedic surgeon to make sure it wasn’t anything serious. On July 31, an orthopedic surgeon diagnosed me with patellofemoral pain syndrome, or runner’s knee—a common injury caused by overuse and/or weak thigh and hip muscles, among other things. He wrote a referral for physical therapy and advised me not to run for six weeks.
I started physical therapy on August 3 and told Julya, my PT angel: “I’m good at following directions; I’ll do whatever you say. Please, just get me to the New York City Marathon start line, and I’ll figure out how to get myself to the finish line.”
Julya and my other PT angel Stephanie worked with me twice a week, teaching me a full routine of foam rolling and strengthening exercises. They taped my knee with KT tape and showed me how to do it myself at home. Luckily, I was able to ride my Peloton without pain, so I started doing Power Zone rides with Matt Wilpers to try to keep up my cardio fitness.
Only a week into PT, Stephanie watched me run on a treadmill for a few minutes and, when that didn’t hurt, encouraged me to try a run the next day. I was thrilled that she believed in running through recovery as long as there was no pain. I was able to complete the run—but then picked up a cold from Evie and got super sick. One step forward, two steps back.
When I was finally healthy again, I felt really out of shape and struggled through a few Peloton classes and one or two runs per week. I worked my way up to a 10-mile run at the end of August, which felt like a huge victory—but far from where I needed to be to train for a marathon.
All I really cared about were getting in quality Sunday long runs along with a few shorter weekday runs, and I managed to do 12 miles, then 15 miles. My knee was still clicking and popping like crazy but was pain-free. However, my other leg developed painful posterior tibial tendonitis from ramping up mileage too quickly and compensating for my weaker leg, so my PT team showed me exercises and massage techniques to keep that at bay.
On September 17, I ran 17 miles and finally booked our flights to NYC. I knew that day that I could run the marathon—not a PR by any means, but I could get from the start to the finish. And over the following six weeks, I successfully completed what felt to me like the bare minimum of training: four days of running with one hilly run per week, zero speed workouts, topping out at 40 miles during peak week.
My knee actually didn’t bother me at all, but the tendonitis was a daily battle. I continued going to PT once a week through September just for that. Run, massage, stretch. Rest as much as possible. Just hang in there, please.
This race didn’t need to be pretty. I just needed to do it for me and prove that grief could not stop me. Runner’s knee could not stop me. Tendonitis could not stop me.
After an emotional year filled with uncertainty and the weight of making such hard decisions about my mom, I needed running, this thing I love so much, to be my anchor and beacon of hope. I needed a day of pure happiness and sunshine and smiles.
Somehow, I got it.
BOOM went the start cannon, and it was time to RUN!
I smiled like a fool all the way across the Verrazzano-Narrows Bridge, as one should when they’re running the greatest marathon in the world.
I smiled in disbelief, gratitude and pride. I admired the view of the Manhattan skyline to my left, stared in awe at the suspension cables ahead and soaked up the energy of exuberant runners all around me. This was what I’d fought so hard for. Nothing could ruin this run!
Well… it was a little warm.
The sunshine that had felt so nice in the charity village felt a bit hotter now that I was running up a decent incline in the first mile of the race. I felt very grateful for the handheld bottle I’d purchased at the last minute after hearing Jess Movold, Meghann Featherstun and Meaghan Murray-Neuberger talk on their pre-race Instagram Live about how they all planned to at least start the race with a handheld. I took sips of Nuun and thought of Emilia Benton emphasizing the importance of electrolytes the previous morning during our shakeout run. I had three more Nuun tablets in a baggie tucked into the narrow pocket of the handheld and figured it would be a good idea to use one per hour.
It felt lovely to run downhill in the second mile on the bridge, and I made sure to keep my pace feeling easy; I didn’t want to destroy my legs when I knew there were many more hills to come.
I was pleasantly surprised that I had plenty of room to run. I worried that a race of more than 50,000 runners would feel claustrophobic, but having each wave separated into three colors—orange on the left side of the bridge, blue on the right side and pink on the bottom deck—helped keep us from running on top of each other.
I had also been worried about starting with faster runners since I registered with 3:45 as my estimated finish time, but I was able to go my own pace and not get swept up. Plenty of people ran slower than me and plenty of people fully stopped to hop up onto the median of the bridge and take pictures.
It was thrilling to make our first borough transition into Brooklyn. I knew I’d see Aaron there somewhere, since he’d rented a Citibike and ridden to Brooklyn first thing in the morning.
The spectators in Brooklyn were a welcome sight, and I busied myself searching their faces for my husband. I saw him around mile three, between miles four and five, and between miles seven and eight. It was so exciting to see him each time!
But the crowds were entertaining in their own right, cheering, blasting music, holding up signs and calling out to everyone who had their name written on their shirt. This was my first marathon with DEVON printed on my singlet and I felt like a rock star. I had 1989 (Taylor’s Version) queued up on Spotify so that I could easily start listening to music whenever I wanted, but I didn’t need to for a good long while.
In different parts of Brooklyn, I heard music that reminded me of my mom and made me feel like she was with me. A man sang “Take Me Home, Country Roads” into a microphone, which my mom used to sing to me and now I sing to Evie at night. And a bagpiper took me back to my childhood days of Scottish Highland dancing—a passion of my mom’s that I promptly quit the moment she let me. I got choked up both times, and many more random times throughout the race, just feeling very lucky and supported.
I stayed on top of my fueling and hydration, eating a UCAN Edge every four miles (about every 40 minutes, based on my pace) and grabbing water at every station to refill my bottle and drink an extra cup. I dropped another Nuun tablet into my bottle when I hit one hour of running. I had felt the hint of an urge to pee in the first few miles of the race, but figured it would go away and it did. No bathroom stops—hooray!
Brooklyn was a party the whole way through, but it became a real rager starting in mile eight. The race course narrowed to just one lane of the road, so spectators were super close to us on both sides and they were wild. It reminded me of the Tour de France, like one of those little mountain towns where people absolutely lose their minds as the world’s best cyclists race to finish a stage. I’d read about the crowd support at the NYC Marathon, but nothing can prepare you to actually experience it. In the words of Rihanna / Nils Sjöberg / Taylor Swift: “Baby, this is what you came for.”
After that, I think I turned on my music for the first time running through a quiet Orthodox Jewish neighborhood. Listening to “Welcome to New York” in New York while running the New York City Marathon? Chef’s kiss.
I crossed the half-marathon timing mat in 2:08:05 and felt great, both physically and about my pace. I was treating it like a long run and keeping my bus seat-mate’s advice about running on a leash for the first 18 miles in the back of my mind. I hoped to have the energy to bust through the wall at mile 20 and maybe even pick up the pace a little after that. (LOL!)
Note who’s right in front of me in the photo above: a woman named Janet, of course!
After crossing the Pulaski Bridge, we were only in Queens for a few miles, and I have no distinct memories of it. I did stay with a friend in Queens during my first-ever trip to NYC in 2011, so I was like, “Hey, I’m back!”
Then the Queensboro Bridge—the second longest in the race—carried us into Manhattan. I listened to more music and marveled over how 1989 is just front-loaded with banger after banger. I’m pretty sure I heard “Out of the Woods” on this bridge and it really hit.
Coming off the bridge, I heard the infamous First Avenue wall of sound and searched the crowd for my dad, since he said he’d be at mile 16. There were sooo many people, though, and I didn’t see him. Turns out the marathon app was a bit wonky and showed me in a different spot than I actually was, so we missed each other. Oh well! The search kept me busy for the first few miles of the long trek up First Avenue.
I saw Aaron again at mile 17 or 18, and he gave me an Oreo, per my pre-race request. The problem was that my stomach felt great and I didn’t want to potentially mess it up with a lot of sugar, so I just held onto it for a few miles before tossing it.
It was not hot, per se, but warmer than I’d like and I remember looking for shade to run in at this point and for the rest of race.
First Avenue seemed to drag on forever, so it was awesome to see the Alzheimer’s Association cheer squad at mile 19. They tracked every single one of the runners on our team and gave us a hero’s welcome as we passed by—so lovely.
Over the Willis Avenue Bridge to hit miles 20 and 21 in the Bronx—great music there!—then over the Third Avenue Bridge to head back to Manhattan for the final time. Someone had a sign that said “LAST DAMN BRIDGE!” and thank goodness, because I was wondering.
My legs started feeling really dang tired in Harlem. I started walking through water stations and treating myself to a little walking here and there where there was shade. I started dumping a cup of water over my head at each station, too.
I saw Aaron again at mile 23, took another Oreo (only ate half) and told him I was taking walk breaks. He said, “Not anymore! 5K left, go, go go!” I wanted to run the rest of the way, but my little walk breaks felt sooo nice. And the race atmosphere was so incredible—a once-in-a-lifetime experience for me—that I didn’t mind taking a bit longer to enjoy it.
Fifth Avenue was kind of a blur. I ran out of Nuun (had dropped the last two tablets into my bottle at the two- and three-hour marks), so I started drinking Gatorade at the aid stations. As diligent as I tried to be about electrolytes, I could feel a crust of salt on my temple and knew I needed more. I ate my last UCAN Edge at mile 24. We entered Central Park, which was super cool, and I tried to limit my walking after that.
My watch was measuring more than a half-mile ahead, so seeing mile 25 pop up on my watch but knowing I had so much farther to go until the actual mile 25 marker was torturous. I wish I’d hit the manual lap button at each mile marker instead. Next time!
I thought my dad was going to be at mile 25 and was bummed when I didn’t see him. I didn’t want him to have come all the way to NYC and miss me completely during the race. I did see my Instagram friend Grace, though, which was unexpected and awesome!
I picked up the pace as much as I could and continued to scan the crowd for my dad. People were packed in like sardines and I had no idea how to spot him, but then I realized he’d probably be the only guy wearing a mask. Sure enough, closer to mile 26, I spotted him wearing a blue surgical mask and smiled the biggest smile. I ran closer to him and waved, then rode that burst of energy toward the finish line.
I saw a sign that said 800 meters to go, but that last stretch felt more like 8 miles. I was on a tear and tried to pass as many people as I could. It took forever, but I finally saw the finish line ahead and couldn’t believe it—I was actually going to finish the New York City Marathon.
I pushed my sunglasses on top of my head, smiled my biggest smile, threw my arms up and crossed the timing mat in 4:22:07 (10:00 average pace). I had hoped to finish under 4:30, so I was thrilled!
DONE. So. Freaking. Happy!!!
My Garmin splits are way off, but at least you can see what I was seeing on my watch, and that I did manage to speed up somewhat for the last bit. And the hills—no joke.
My legs actually didn’t feel too bad afterward and it was nice to keep moving as I walked to collect my medal, bag of goodies and fleece-lined poncho. I was hungry so I had a couple of pretzels from the goodie bag, but they were like dust in my mouth. Then I felt like I might puke and the only place it seemed feasible to do that was in one of the plastic bags tied to the fence to collect bottles and garbage. I kind of hunkered over one of those bags for a few minutes until the feeling passed.
The walk out of Central Park and to the family reunion area took a long time. I crossed the finish line at 2:12 and the photo with Aaron below has a 2:53 timestamp. I’m sure Aaron was sick of waiting for me, but I didn’t mind the time to walk and process what just happened. I would have felt differently if it was cold or rainy out, I’m sure.
I got teary eyed when I saw Aaron, and fully burst into tears when we met up with my dad. He said he was proud of me, and that my mom was proud of me, too. I know she would have loved to have been there.
Aaron was the MVP of the day. He rode 56 miles (!) on a non-electric Citibike to see me at so many different parts of the course. When we got back to our hotel, he also went and stood in line for 40 minutes at The Halal Guys across the street because a beef gyro platter sounded sooo good to me (and it was). He was probably just as tired as I was. Best husband ever.
I cleaned up and we went to Morandi for dinner with my dad. I enjoyed a long-awaited glass of champagne and the most delicious lasagna. J. Smith-Cameron, who played Gerri on Succession, was there, too!
Even though my body was exhausted, my mind was buzzing with excitement and I could barely fall asleep that night. Despite being the second slowest of the nine marathons I’ve run, it was by far my favorite and the one I’m most proud of.
Part of me wishes I’d been able to have a stronger training cycle, but perhaps things worked out as they should have. I’m sure, with my mom beginning hospice care, the last thing I needed to do over the past few months was put myself through the wringer in pursuit of a PR. And if I’d been focused on my time during the race, I’d have missed all the magic New York City has to offer.
I have so much to be thankful for, especially that the injuries that plagued my training never made themselves known during the race. My knee behaved perfectly, and the tendonitis—what tendonitis? Even in the days after the race, the only thing I felt was soreness in my quads from all the hills. Thank you to my PT angels, to my foam roller and resistance band, and to all the beautiful rest I enjoyed while tapering.
Everything was perfectly imperfect, just how it was.
I look back on this experience, and the last four years, and think: Alzheimer’s has taken so much from us. It stole my mom, Evie’s nana, Don’s wife. It will take Janet eventually.
But it couldn’t stop me from having the best day in New York.
I will hold on to that for a very, very long time.
I must begin with a huge THANK YOU for helping me exceed my $10,000 Alzheimer’s Association fundraising goal—$10,535, to be exact! I am in awe of your incredible support. Thank you for believing in me and caring enough to make a difference. ❤
Aaron and I began our New York City adventure with an early morning flight out of Seattle on Friday, November 3. I considered booking a Thursday-night red eye instead to give us more time in the city on Friday, but my Instagram friends convinced me not to. That may have been the right decision in terms of getting quality sleep before the marathon, but I was sad to miss the Ali On the Run live show with Ellie Kemper on Friday afternoon; we were just landing at JFK as it began.
After an hour-and-a-half taxi ride to Manhattan—during which I became incredibly grateful Aaron’s mom Greta was babysitting Evie back home, since she would’ve hated such a long travel day—we checked into the Hilton Midtown around 6pm.
Immediately, I spotted professional runners Keira D’Amato and Colleen Quigley in the hotel lobby and knew I’d booked the right hotel! I was too exhausted and shy to approach anyone, but internally fangirled very hard. Aaron and I dropped our bags off in our room and headed to LumLum, where we enjoyed incredible Thai food for dinner.
I didn’t go out of my way to carb load for this race after I had a terrible experience trying to majorly carb load for a half marathon in the spring. My meals and snacks were just a bit more carb-y than normal and it worked out great for me.
I was in bed by 9:30pm (which felt like 6:30 to my body) to try to get on East coast time. I fell asleep immediately, but woke up around midnight to use the bathroom and lay awake for at least an hour afterward. Dang it!
On Saturday, I woke up at 6:30 feeling somewhat refreshed, ate a couple of Superhero Muffins from my stash (a must for destination races) and ran a few blocks to Central Park to meet up with Emilia Benton for a shakeout run.
Our run flew by and I wished we had so much more time to chat. I told her about my obsession with Liquid I.V. and how I wasn’t sure I should use it every day, but had been the past few weeks to stay hydrated. She dropped this bit of wisdom that wound up really helping my race:
I headed back to the hotel, grabbed oatmeal and fruit from the lobby restaurant, then showered and got ready for the day. First we made a quick stop at the marathon expo to pick up my bib and shirt. We crossed paths with the Peloton instructor Olivia Amato on our way in!
Then we headed to Bacall’s for the Alzheimer’s Association team lunch. It was so nice to meet the Alzheimer’s Association folks I’d been corresponding with all these months and see a lot of the team in person. We shared a table with a woman named Donna and her husband. Donna has been running marathons—mostly Boston, where she lives—for the Alzheimer’s Association for many years and estimates she has raised more than $200,000 in total. She was diagnosed with breast cancer earlier this year and continued training through her treatment—incredible!
With our bellies full of pasta, we headed back to the hotel to relax before dinner. Another Instagram friend, Grace, stopped by the lobby with her adorable son to say hi and deliver some Levain Bakery cookies—so sweet! We also fangirled over retired pro runner Meb Keflezighi, who gave us big hugs and was so nice. His brother and manager Hawi took our photo, and I made sure to let Hawi know I knew all about him from Ali’s podcast so he wouldn’t feel like we only cared about Meb. 🙂
Then I texted Ali Feller herself, queen of NYC Marathon weekend, to see if she was around. She was staying at the same hotel and I was determined to sneak in a quick hug since I knew she was incredibly busy. The only time I’ve spent with Ali in person was in NYC in 2015, when she ran 13 miles of a 19-mile run with me, but I’ve also had the honor of being a guest on her podcast and guest-hosting an Ask Ali episode.
It was Zac Clark’s episode of Ali’s podcast that had me in tears last year and inspired me to run the NYC Marathon. And this year, Ali has been undergoing treatment for breast cancer. I wanted to give her a hug even more than I wanted to get one from her.
Alas, she was not around, but she promised to text me when she was.
I laid out my race outfit and executed my, um, interesting fuel-carrying strategy. I could only fit two UCAN Edge packets in my shorts pockets, so I pinned the other four to my sports bra. I’d never tried this before, but my race singlet seemed to be snug enough that the packets wouldn’t bounce when I ran. Fingers crossed!
Aaron and I met up with my dad for dinner at Au Cheval, a restaurant famous for its double cheeseburger. We fell in love with the burger at the original Au Cheval in Chicago in 2015, and Aaron was eager to eat it again. Luckily, a big, greasy hamburger and fries is my go-to pre-race meal! We can confirm it still hits.
My dad was in town to sightsee in addition to spectating the marathon, so it was fun to hear all about his adventures. I feel very lucky he came all that way to cheer for me.
I didn’t get in bed that night until about 10:30, but the end of Daylight Saving Time was on my side; we “fell back” overnight and gained an extra hour of sleep. Hooray! It took me a long time to quiet my mind and fall asleep, so the extra hour was probably a wash.
I woke up at 4am full of nerves and excitement. I was never nervous about the race itself; it was more about the logistics of making sure I had everything I needed and getting to Staten Island.
I quietly got ready in the bathroom while Aaron slept. I drank a full bottle of Liquid I.V., ate two Superhero Muffins and did my business. I was just finishing getting ready when I got a text from Ali asking if she could meet me in the lobby at 5:15. I was planning to leave at 5:00, so I assumed we wouldn’t catch each other and wished her luck on her broadcast. She replied: “I’m coming down to give you a hug.”
Due to my last-minute triple-checking that I had everything I needed, I was NOT in the lobby at 5:00 and Ali was—oops! I finally made it down at like 5:08 and got teary-eyed in the elevator. As soon as I saw her, I ran into her arms and fully burst into tears. Dramatic. I was feeling all the emotions of race day and finally getting to hug a friend who has been going through a lot. We only had a minute or so before I had to leave and she had to run back up to her room, but I will never forget that moment, captured here in a chaotic blur.
I hightailed it to the Silver Level charity buses at 59th & 7th, which was really just a few minutes’ walk. The buses were scheduled to depart at 5:45 and I wanted to give myself plenty of time. I hopped on one that was nearly full and it left right away. I chatted with the woman next to me the entire time, so the ride went quickly. She dropped another bit of wisdom that I carried with me during the race:
“Run like you’re on a leash for the first 18 miles.”
We arrived at Fort Wadsworth on Staten Island around 6:15 and walked like a herd of cattle through security and into Athletes’ Village. I saw the silhouette of the Verrazzano-Narrows bridge against the sunrise and got so happy and excited. I was finally there and just had to wait until it was my turn to run!
I had a few hours to kill before the Wave 2 start at 9:45, and I was very thankful for the accommodations we had in the Silver Charity Village. The Alzheimer’s Association team had its own tent filled with chairs, and the village had plenty of porta-potties, bottled water, coffee and bagels. As the sun rose, it was warmer and nicer outside of the tent, so we pulled the chairs outside and sat and talked. I ate a banana and continued to drink water to stay hydrated.
I had a nice chat with Alissa, who was in Wave 1 and was treating the marathon like a long run in her buildup to a potential sub-3:00 at CIM. We shared our names so we could track each other, and it was only after she messaged me on Instagram shortly after she headed to her corral that I realized her last name—Kolarik—was so familiar to me because I already followed her!
Around 8:00, I ate a peanut butter and honey sandwich I’d made the night before. I kept drinking water and used the porta-potty two or three times. My physical therapy for runner’s knee included foam rolling before every workout, and since it wasn’t practical to bring a foam roller to the start, I brought a Stick with me. I’d had it for many years and rarely used it, so I didn’t mind tossing it. (You can’t check bags at the start, so anything you bring to Staten Island and don’t take with you on the run gets donated or thrown away.) I started rolling out all my leg muscles around 8:45.
When the Wave 2 corrals opened at 9:05, I did my dynamic stretching routine in the charity village and used the bathroom one more time. I stripped off my throwaway clothes and bequeathed the Stick to my teammates to use before their waves started. One of the Alzheimer’s Association folks stopped me to take this photo. I ironed photos of my mom onto the back of my singlet so that she’d be with me the whole time.
The entire team cheered for me as I left the village, which made me smile so big! I absolutely loved my whole experience running with a charity team and highly recommend it.
The weather was a dream: in the high 40s when I arrived on Staten Island and in the 50s by the time the Wave 2 corrals opened. I brought a throwaway hat and gloves, but didn’t use them. I wore arm warmers as I walked to my corral, but didn’t really need them and ditched them before starting.
Once I got into Orange Corral E around 9:20, I immediately got in line for the porta-potties to go one last time. The corrals closed at 9:25, I did my business, and I was out and eating my pre-race UCAN Edge by 9:30. I ran into my college friend Jesse, so time flew by as we chatted and walked slowly in the herd of runners toward the start line. I used to party at Jesse’s fraternity in college, so I found it hilarious that we’d meet again at the start of a marathon!
Shoutout to NYRR: Everything about Athletes’ Village, the three starting colors (orange, blue and pink) and the corrals was super organized, clearly marked and easy to find—and ran perfectly on time. These people know what they’re doing!
Finally I heard the National Anthem, then Frank Sinatra singing “New York, New York.”
BOOM went the start cannon, and it was time to RUN!
When my mom began hospice care in July, I believed she would die within a month—not because I’m naive to how long the hospice period can last, but because the hospice nurse said as much.
During our initial meeting with the nurse and social worker, they walked us through a binder of information and asked us if we had any questions. Of course, we wanted to know if they had any idea of how long she had left—and, of course, they declined to estimate. Hospice is for people who likely have six months or less to live, but I wanted all the answers I could get. Nobody has a crystal ball, though, so fair enough.
That changed once the nurse got a good look at my mom. As my mom slowly paced the memory care dining room with Don trailing to make sure she didn’t trip over anything, the nurse quietly said to me: “With how frail she is, I don’t expect this to go on very long.”
“Do you mean months or weeks?” I asked.
“Weeks,” she said.
I believed her.
At 97 pounds, weak and hunched over, it seemed miraculous my mom was still alive at that point. She hadn’t eaten a full meal in several months. When her weight dropped drastically earlier in the year, we gave the okay for her facility to obtain a doctor’s order that would allow them to offer her an Ensure shake with each meal, and that became her primary source of nutrition. But at 220 calories a bottle, it wasn’t enough to help her gain a significant amount of weight, even if she drank every last drop. She ultimately qualified for hospice due to malnutrition.
In the spring, we made some changes to my mom’s medication after many long discussions and consulting with her doctor. We decided to taper her off the Alzheimer’s drugs she’d been on since she received her diagnosis. They are intended to improve mental function and confusion related to Alzheimer’s disease, but are by no means treatments or cures. The hope is that they can slow the progression, but there’s really no way to know if they do. We had reached a point where we no longer wanted to slow the progression, as it would only prolong her suffering.
Her doctor also prescribed an antidepressant to help with my mom’s mood. She sobbed every single time we visited, which was just horrible. I worried about medicating her into oblivion, but the doctor assured me an SSRI would simply level her out.
Changes in medication can affect appetite, so once she was off the Alzheimer’s drugs and on the SSRI, the doctor adjusted the dosage to see if she could find a level that would help boost her appetite—or, if that didn’t work, she would determine the lack of appetite was unrelated and make the hospice referral.
We know how that turned out.
The decision to stop the Alzheimer’s drugs was agonizing. Then, with hospice, came the question of whether we should continue with the Ensure. I understood Ensure to be a nutrition shake you could buy without a prescription at any grocery or drugstore—and I ordered a month’s supply at a time to be delivered from Costco to her facility—but they treat it as a medication and keep it locked up with the other drugs. Hospice considers it to be a life-prolonging supplement, and therefore does not cover the cost of it like it does her hospital bed rental and supplies like briefs and wipes.
“Life prolonging” and hospice don’t really go together. Our goal had changed. But the idea of cutting off my mom’s near sole source of nutrition, and thus being responsible for hastening her death, weighed on me. The decision belonged to three of us—Don, my brother and me—but I was the one starting these conversations, determined to do the right thing for my mom—what she would have wanted if she could have chosen.
I pored over her advance directive, which, unsurprisingly, addressed none of these intricacies of the final stage of dementia. I recalled a conversation we had after her breast cancer treatment, where she regretted only doing a single mastectomy and worried about the cancer coming back in her remaining breast. Chemo had ravaged her. “I won’t go through that again,” she told me. At the time, I couldn’t believe she wouldn’t pursue treatment, wouldn’t jump at the chance to live longer and spend more time with her family. Now, I understand some things are worse than death.
Many conversations. Research. Soul searching. Tears. We decided to stop Ensure. The hospice team seemed relieved. They didn’t want to give their opinion, but it became clear after the decision was made.
“Weeks,” she said.
I believed her.
It was one thing to start hospice. It was another to come to terms with the fact that my mom could be gone so soon.
I shifted into survival mode, thinking about what I needed to do in the weeks leading up to her death and the weeks after. I notified close friends and family in case they wanted to plan any last visits. I looked in dismay at the trips I had planned over the next few months, not sure whether to cancel or wait and see.
My therapist and I discussed what a “good death” would look like; what I wanted to say to her before she went, whether she could understand or not; whether I wanted to be there when she died; whether she would want me to be there when she died. I ordered and devoured a book by a hospice nurse, which brought me great peace. I started looking on the bright side: if my mom were to die soon from malnutrition, she (and we) would skip some of the most agonizing steps of her dying from Alzheimer’s. Yay, I guess?
I thought about how beautiful that summer had been, and felt comforted by the fact that if my mom died soon, I could still go into my backyard and lie down on the toasty patio pavers for a few minutes, turning my face up toward the sun and letting its warmth seep through my skin and into my bones—something I often do after therapy.
I’ve noticed the seasons and weather have had a greater impact on my mood these past few years, and I have no doubt it’s because of this prolonged experience of losing my mom. Everything is sadder when it’s gloomy; everything feels more hopeful when the sun shines. I’d give anything to warm my bones on the darkest days.
A week into hospice, I wrote this through tears in the middle of the night:
I hope you die on a summer day
so your last breaths aren’t shattered by raindrops
but harmonized with birdsong.
I hope your body is drenched in light
impossibly aglow
a celebration of life
and whatever comes next.
I hope you ascend on a sunbeam
migrate with the butterflies
tumble along a breeze like a dandelion seed
look down on the world in all its beauty and think
how lucky was I to be alive
just a little bit
and see myself out amid clear skies
75 degrees
a high like no other.
That’s me projecting what I think a “good death” would look like. It’s also me working to accept, to look on the bright side, to find a way to make this very sad thing feel kind of beautiful. In any case, it’s probably the nicest thing you’ve ever read that starts with “I hope you die.”
My mom did not die on a summer day.
You know what she did do?
She started eating.
Maybe my mom’s body finally squared up with the medication changes. Or maybe it’s an example of us making plans and God laughing. Or maybe, like the badass she always has been, she pulled an Arya Stark and said, “Not today.”
I don’t know how to explain it, but the day after her supply of Ensure ran out, she ate three square meals like it was her job—and she has ever since.
You’d think this would be a happy turn of events, but it’s a real mindfuck to go from “weeks” to “???” I had accepted, looked on the bright side, found a way to make it beautiful. It felt like a relief to have an end to this nightmare in sight. But still, we go on.
Just because my mom is eating doesn’t mean everything is peachy. She has only gained a few pounds and is still slowly descending through this final stage of dementia. All of those most agonizing steps of dying from Alzheimer’s loom before us. She has become very unsteady on her feet, but still walks up and down the halls of her facility constantly—a recipe for disaster that has caused many falls. I worry I’ll get a terrible phone call one of these days.
She was recently reevaluated and recertified for hospice, for which I’m grateful. The team’s support has been invaluable, and I’d hate for her to graduate from hospice only to have to inevitably reenroll. It’s a trauma I don’t wish to repeat.
I still struggle with uncertainty. I worry about getting through the holidays this year. I worry about her dying on a winter day; where will I find the warmth to get through it? Maybe she’ll die next spring. Maybe next summer. I don’t get to decide. I just need to gather the strength.
The good news is: we didn’t kill her. We agonized over the Ensure, but maybe stopping it was actually the best thing we could have done. I know we made the right decision with utmost love for her. Maybe this is her way of lifting that burden from us.
The other good news is: she doesn’t cry anymore. The SSRI indeed leveled her out, so her mood ranges from placid to happy. Despair seems to be a thing of the past. That, too, feels like a huge burden lifted. I used to need the rest of the weekend to emotionally recover from our Saturday visits. Now, the sadness is manageable.
Seeing her is still tough. I notice her physical appearance changing week by week. Although she’s a bit stronger and more energetic than she was in July, her temples and eyes now appear sunken in. It’s getting more difficult, too, to physically and verbally direct her when I’m helping her in and out of the car, or feeding her, or helping her in the bathroom. A few months ago, I offhandedly said “Janet” and she whipped her head around toward me in a way she never did when I said “Mom.” So now, she is Janet, which makes sense because that’s who she was long before she was Mom. And it helps me a bit to separate the two. Mom has been gone for a while; now I’m helping Janet through this last phase of her life.
Despite the hard parts, I treasure my time with her. We listen to music in the car—her same favorites, over and over—and she still loves the Backstreet Boys. We watch romantic comedies. She recently stayed awake through the entirety of “Crazy, Stupid, Love” and laughed her mostly silent laugh at all the funny parts, of which there are many. She gets a kick out of me good-naturedly making fun of Don. In those moments, the light comes back into her eyes, and she’s Mom again.
Aaron, Evie and I recently visited Leavenworth on one of those trips we didn’t have to cancel because my mom is still alive. On the drive there, I always look for landmarks that indicate we’re nearing the Bavarian-themed town. One of them, if you’ve come over Blewett Pass, is Rollercoaster Road, just to the left before you reach Highway 2. I’ve never been down Rollercoaster Road, but I always thought it must be fun.
“I’ve ridden it on my bike,” Aaron told me. “It’s not fun on a bike.”
That makes sense. I imagine relentless ups and downs, probably some twists and turns. It’s like this Alzheimer’s journey. It’s like life. Fun if you’ve got the right equipment, if you’ve willingly gone down it. Not so fun when you’re pedaling as hard as you can, when you’re not sure where it’ll go next or when it’ll end.
For now, I’m still on my own Rollercoaster Road. After so many ups and downs and twists and turns this year, it feels like I’m cruising through a fairly level section, with no idea what comes next. I’m doing my best to hang in there. Next week is November 1, four years since my mom’s diagnosis. I’ll have earned my bachelor’s degree in Alzheimer’s, and I guess I’ll be going for my master’s. There’s certainly much more to learn.
I’ve also got the New York City Marathon coming up on November 5, which has been a powerful beacon through all of this—something to work toward and look forward to. A reason not to drown. A bout of runner’s knee threatened to take this race away from me, but nine weeks of physical therapy and a bit of determination saved my training. I hope reaching the finish line will feel like a real triumph—physically, mentally and emotionally. I worry about what comes after, but I try to put that aside so I can just enjoy.
I tell myself that someday, Rollercoaster Road will once again just be a thing I drive past on my way to somewhere better.
Thank you for reading. I’m 82% of the way to my $10,000 fundraising goal for the Alzheimer’s Association. If you’d like to donate, you can do so here before the NYC Marathon on November 5. Thank you so much for your support. ❤
With Alzheimer’s, there is nothing to fight. There is only a fatal truth you might at first deny and wish away, then curse and mourn, then ultimately surrender to. Trying to hold on to your loved one—as they were before or as they are now, whatever that may be today—is like holding a handful of sand. You can clench your fist tightly for as long as possible, but every last grain will inevitably slip through your fingers. At some point you realize it’s a mercy, for yourself and for them, to let go.
Perhaps that’s why I felt a wave of peace last week after we enrolled my mom in hospice care. Our Sisyphean task had ended; it was time to surrender. It felt like a seismic shift to go from doing everything we could to improve and prolong her life, to simply clearing the path and steeling ourselves to accompany her on this final leg of her journey. The only goal now is to ensure her a peaceful and painless death. It’s a hard thing, but it’s the right thing.
The worst part is that we will lose her twice. We lost her once, in mind, years ago; we’ll lose her in body next. As upsetting as it is to see her in her current state, at least I can still hug her. At least she still responds in kind when I tell her I love her. Soon, even those last few bits of my mom will be gone forever.
But there is comfort in knowing I will find her again after her death. In her magnificent book The Last Ocean, Nicci Gerrard writes:
“Death is never a slight thing, however peaceful a passing is, however minute the distance crossed. Just a breath away, then like a feather being blown with a single puff and a whole world has disappeared.
“And yet death can also restore a person, especially when that person had been un-made by dementia. Once they die, they are no longer only old and frail and ill, they are no longer only confused and forgetful, no longer a wrecked body and a failing mind, no longer not themselves. Because they have gone from us, they can come back to us and be all the selves they have ever been. Young, old, everything in between. Robust, vulnerable, everything in between. And often we fall head over heels in love with all these selves and we understand how they contained multitudes.”
I shelved the practice of missing my Real Mom long ago. It felt like a betrayal to who she is now to long for a previous version of her. Why push aside the person in front of me in a favor of memories of someone who no longer exists in this world? She is still my mom, after all. Not in the way she once was, but through no fault of her own. I know my Real Mom wanted desperately to stay with us. The least I can do is stay with her, holding her hand through every heartbreaking devolution.
I know I’ll eventually miss even the hardest days with her. But I also look forward to reclaiming my Real Mom. I hope to shuffle these most recent years to the back of my mind and make space for the warm glow of happy memories to come flooding back. I’d like to trade the awkward, one-sided conversations for our long discussions over fish tacos at the mall. Can I archive the many times I wiped her nose and changed her briefs and hear her laugh again instead?
All of it will always exist, but I hope my first thoughts of my mom each day will not be of this painful ending, but of the very best of her. I suppose it’s on me to choose to play the highlight reel. That’s the gift in this tragedy: Because they have gone from us, they can come back to us.
She has already popped up a few times. When we received the hospice referral from her doctor, I lay awake that night with this image from her 2015 wedding day in my mind. She was smiling, in love, happy and hopeful for the future.
I cried to this version of my mom: “I’m so, so sorry I couldn’t save you.” My heart broke for her, knowing now what was ahead. I felt ill, like I wanted to peel off my skin, as if sacrificing myself would make any difference. I wanted to go back to that day and somehow change it all for her.
The sick thing—the thing that makes me grateful for biweekly therapy sessions over the past two-and-a-half years and counting—is that I’m not sorry for my current mom. Rather, I’m relieved there is an end in sight to her suffering. Different feelings for different moms. My therapist earns her paycheck a thousand times over for helping me sort through everything.
The other time my mom popped up was when I drove her back to memory care after a recent weekend visit at her old home. She was sitting shotgun next to me, silent, staring out the windshield with her mouth gently hanging open as if she didn’t have the energy or muscle memory to close it. In a flash, I saw my Real Mom sitting there instead. Her gaunt cheeks were plump again, her hair was styled, her clothes were carefully chosen and free from the stains of spilled food or worse. We were heading to lunch, or to her favorite Eddie Bauer Outlet, or to try on wedding dresses for the millionth time. She was there. And she still is, somewhere.
I’m not sure how to navigate this hospice period. (I bet the simple and correct answer is: one day at a time.) There is inevitability and uncertainty. How long? I hope not too long, for her sake—but also not too short. I need time to say all the things, to let her know she was the best mom and grandma, to assure her that we’ll all be okay and that she shouldn’t be scared to leave whenever she needs to. But I also don’t want to freak her out; she doesn’t know she’s dying. That’s a blessing, and also terribly sad.
My mission is to make her feel loved, like it’s her birthday or Mother’s Day every day. She has lost her appetite and taste for most food, but she’ll still make short work of a brownie or ice cream bar with her tiny bites. And while she is nonreactive to many stimuli, the right music still gets her smiling and dancing with her hands.
Let’s make this thing a party. Let’s indulge in chocolate and dancing and joy until the very end. Let’s give this life a beautiful send-off, for what is it if not to be savored with the people we love?
First of all: WOW. I’m overwhelmed by the response to my previous post and the support you’ve shown for my NYC Marathon fundraiser for the Alzheimer’s Association. The fundraising commitment to earn my spot on the team was $4,200; you all exceeded that in nine hours! 🤯
Given that more than six months remain until race day, I’d be remiss not to increase my goal and create space for more donations. My new goal is to raise $10,000 by November 5. If you haven’t already donated and would like to, you can do so here.
To everyone who already donated: thank you, thank you, THANK YOU! I wanted to create a tsunami of funding to help wipe out Alzheimer’s; you all did that and then some. Your support means more than I can put into words. 💜
So many of you reached out via Instagram DM to share kind words or your own stories about parents lost too soon to Alzheimer’s, cancer and other illnesses. Each story touched me deeply. This lonely journey of losing a parent is made better by connecting with and learning bits of wisdom from those who’ve walked it before. I have found it so therapeutic and freeing to write about the hardest parts of this experience and then release them into the world; it’s almost a physical relief to gather up these things that weigh on me—grief, guilt, helplessness—and get them out of my body. Thank you for reaching out and trusting me with the things that weigh on you, too. I’m happy to help carry your load.
I’m so excited to share all about my NYC Marathon training once it begins. After my very flat half marathon on May 6, I’m going to start running hills like there’s no tomorrow. I’m thrilled to have access to the Alzheimer’s Association team coach, Amanda LaVergne, for all the info and training tips I need to run my best race.
NYC isn’t the easiest course, but make no mistake: I will be running for a PR. I want to soak in all the sights and sounds and excitement of one of the greatest marathons in the world, and I want to absolutely crush it. I ain’t flying across the country for a fun run!
I know I haven’t reached my full running potential yet, and I’m excited to chase it. I still want to qualify for the Boston Marathon someday. I’ve got 13 minutes and 26 seconds to chip away at over the next marathon (or two, or three, or more), at least until I turn 40 in 2027; then I get an extra five minutes. It seems quite doable to me if I put in the work, and I’m laser focused this year on working harder than I ever have before.
With the support of the Alzheimer’s Association team and all of you who’ve given me such a boost with your donations and words of encouragement, I’ll have the metaphorical (and hopefully literal) wind at my back on November 5. Plus, my mom will be with me every step of the way. For her, I’ll run like hell.
“No matter how prepared you think you are, nothing prepares you for the death of someone you love. No amount of time. No amount of suffering. No amount of wishing for the end to come. It still feels unexpected. It still seems sudden. It still hurts like hell.”
Before Christmas, I talked with my therapist about my mom’s drastic decline in 2022. Shortly after we moved her into a new memory care facility in March, she lost the ability to feed herself and required an aide to feed her at every meal. In the fall, she became incontinent.
“I haven’t been keeping close track of her progression,” I said. “What stage would you say she’s in?”
My therapist, who previously worked for the Alzheimer’s Association, referred me to the Global Deterioration Scale for primary degenerative dementia. As we read through the characteristics of each level, we agreed that my mom was transitioning from stage six to seven—out of seven total.
I was shocked. My mom was diagnosed three and a half years ago, in November 2019. The neurologist told us that people with Alzheimer’s can live from two to 20 years after diagnosis, and the younger they are, the longer they’re likely to live. I’ve met a handful of Alzheimer’s daughters online and their parents seemed to live about 10 years beyond their diagnosis. I’d been gearing up for a long haul.
The realization that she might die much sooner, maybe even in 2023, smacked me across the face.
Death aside, the deterioration that occurs in level seven is incredibly sad:
All verbal abilities are lost over the course of this stage. Frequently there is no speech at all—only unintelligible utterances and rare emergence of seemingly forgotten words and phrases. Incontinent of urine, requires assistance toileting and feeding. Basic psychomotor skills, e.g., ability to walk, are lost with the progression of this stage. The brain appears to no longer be able to tell the body what to do. Generalized rigidity and developmental neurologic reflexes are frequently present.
Of course I don’t want my mom to die. But she is going to die—there’s no way around that—and this is no way to live. My feelings are complicated.
Is this the year my mom will die? Maybe. If not this year, then certainly the next, or the next after that. The disease is progressing so quickly. How do I prepare for the end?
Should I pre-write her obituary? It feels wrong to write about her in the past tense while she’s still alive. But in many ways, her story has ended; there are no more achievements to come. In an episode of the hilarious and moving Apple TV+ series Shrinking, Jason Segel’s character pages through a scrapbook his late wife made chronicling their relationship. He’s looking at the photos with tears in his eyes when, suddenly, he flips to the first of many blank, unfilled pages. “I guess that’s all we get,” he says.
Should I start going through the boxes and closets of her things that we didn’t move with her into memory care, that sit untouched and remind my stepdad every day of her absence? Or should I just try to live in the moment, enjoy the time I have left with her, and not wish it away by jumping forward to the inevitable end?
My instinct is to work ahead on the things I know will hurt more to do after she’s gone. But it hurts now, too. The worst is finding unused items in those boxes and closets: a brand-new Clinique eyeshadow palette; a woven leather handbag with the tag still attached; so many pristine three-packs of her favorite socks ready to replace the ones with holes in the bottoms. All emblems of the life she won’t get to live.
I have an unworn black dress in my own closet, still wrapped in plastic. I won’t open it until I need to.
I steeled myself for Christmas. I was determined to be present, take lots of pictures and videos, and soak everything in on what could very well be the last Christmas we’d celebrate with my mom at her house. Once she’s unable to walk, it might be too physically and emotionally stressful for her to travel. We can visit her in memory care, of course, but it won’t be the same.
In reality, that Christmas celebration was a stark reminder of all that had been lost. We still enjoyed a nice dinner and exchanged gifts and admired the Christmas tree, but my mom—previously the orchestrator of festive fun—was a blank-faced bystander to it all. Rather than being present and soaking everything in, I felt myself mentally curl up into a protective ball.
When my mom is gone, I’ll try to skip over the memories of that evening and live instead in the warm glow of Christmases past. My job, now, is to create that magic for my own daughter, so that her holiday memories will be just as wonderful as the ones I cherish.
The longer my mom is ill, the farther away the mom I used to know—my Real Mom—seems. I hope when I do sort through her things, I’ll be able to piece together who she was through the things she loved. I hope to find her in her vast collection of quilting fabric, her books about English gardens and the royals, her memorabilia marking her time as a tour guide at Disneyland. I hope to find things she’s written, things that will help me see her in a new light and answer questions I can’t ask her anymore. I hope, instead of despairing over the emblems of her stolen years, I will feel something akin to happiness sitting amongst piles of evidence of the life she lived.
“How will she die? “I asked my therapist. “Will she forget how to swallow and just starve to death?”
Maybe, she said. Often, people with Alzheimer’s have more and more difficulty chewing and swallowing, and will aspirate a piece of food into their lungs, where it can lead to pneumonia—the ultimate cause of death.
My mom frequently coughs after being fed bites of food. Every time she does, I wonder: Is this it? Is this stupid chunk of chicken the one that will end it all?
So far, she’s made it through our Saturday lunches unscathed. But each time I see her, she is noticeably thinner.
Before we first moved her into memory care in 2021, she’d wasted away to 99 pounds—frightening for her 5’5″ frame. She ate well after the move and packed on nearly 30 pounds. She continued to do well in early 2022, then began to eat less once she needed to be fed at every meal. Over the past few months, her weight has dropped precipitously. We’re back to where she was when she first forgot how to prepare food, whether she had already eaten or not, and whether she was even hungry. Her caregivers report that she only takes a few bites at each meal.
We used to be about the same height, but I’ve noticed her head drooping lower and lower, and her neck and shoulders hunching farther forward, so she now looks primarily at the ground. My mom, who was once roughly my physical equal, is shrinking in every direction.
How long until she disappears?
My mom is going to die, probably much sooner that I thought, and it’s going to be horrible to watch. What I want more than anything is for the end to be as pleasant as possible for her, on the inside. When the time comes, I hope she will slip into a coma and go on a nice journey, like Rebecca Pearson does in the penultimate episode of This Is Us. I hope it’s like “The Train.”
For my part—and I’m painfully aware of how self-absorbed this sounds, worrying about surviving this thing when my mom is the one suffering and dying—I hope I feel at peace. Maybe even happy for her. Her confusion, aimlessness, loneliness and frustration over not being to hold a thought long enough to properly express or act upon it are completely gutting. She sobs every time we visit. It is heartbreaking to the highest degree, and the best I can do is hold her hand and tell her that I’m here, that everything is going to be okay.
Nothing is okay about any of this.
I knew 2023 was never going to be the best year ever. If my mom survives it, she’ll be a shadow of the person she was even at the end of 2022. She may be in a wheelchair. She may not be able to communicate at all.
The thing I feared most—my mom forgetting who I am—may never come to fruition if she completely loses the ability to indicate recognition or the lack thereof. Her communication is limited as it is. She may very well already think I’m a kind stranger who makes her lunch and paints her nails on weekends. I don’t ask, and I don’t care. As long as she feels loved and comforted by me, that’s enough.
It turns out that bearing witness to her ongoing physical and emotional suffering is far worse than that clichéd Alzheimer’s milestone anyway. Despair threatens to drown me some days; lately, more often than I care to admit.
I need to keep busy to stay afloat. I’ve got a lineup of fun trips to look forward to this year—LEGOLAND with my little family, a Scottsdale spa weekend with my best friends, and more—plus some big running goals to tackle. I’m training to PR in the half marathon at the Snohomish Women’s Run on May 6, and I’m thrilled and honored to be part of the Alzheimer’s Association team to run the TCS New York City Marathon on November 5.
It was last fall, while listening to an Ali On the Run Show episode about the NYC Marathon, that I was moved to tears by the guest’s experiences at the race and vowed to run it myself. My mom’s decline has given me a hunger for more challenges, more adventures, more life. The NYC Marathon is a once-in-a-lifetime experience, at least for this West Coaster. I don’t want to wait until I can no longer run 26.2 miles and always wish I’d made that journey on foot through the city’s five boroughs.
Fundraising for the Alzheimer’s Association adds meaning and purpose beyond measure. When I ran the California International Marathon in 2021, I had an amazing experience raising money for HFC—Seth and Lauren Miller Rogen’s charity that supports Alzheimer’s families and caregivers with support groups and respite care grants. I set out to raise $2,500 and exceeded $5,000 by race day, thanks to so many generous Internet friends and real-life loved ones. I felt my mom with me through every mile of the race, and finished strong with nearly a six-minute PR.
The Alzheimer’s Association is tackling another side of the disease. As the largest nonprofit funder of Alzheimer’s research, the Association is committed to advancing vital research toward methods of treatment, prevention and, ultimately, a cure. It’s also the leading voice for Alzheimer’s disease advocacy, fighting for critical Alzheimer’s research and care initiatives at the state and federal level. And, like HFC, the Association helps provide care and support for those affected by Alzheimer’s and other dementias with support groups, a 24/7 helpline (800.272.3900), and more.
I know donating to nonprofits like this can feel like a drop in the bucket toward tackling a massive problem. But for my mom, for families like mine, for your grandparents and parents, and eventually for you and your kids and grandkids—every donation counts. Let’s make it rain and build a tsunami of funding to wipe this thing out for good. Nobody should have to suffer like my mom, and I have to believe treatment methods and a cure are out there, waiting for a team of neuroscientists to hit the jackpot. I’m happy to throw money at that if it means other families won’t have to walk this devastating path in the future. More life for everyone.
I’ve made the first donation toward my $10,000 fundraising goal (extended since we exceeded my initial $4,200 goal in 9 hours!). If you’d like to join me—in support of my NYC Marathon training, in support of my mom, in honor or memory of someone you love, as a big FUCK YOU to Alzheimer’s, or all of the above—please donate here.
If it’s not within your means to donate right now, I’m also accepting good vibes for a successful marathon training cycle and a beautiful NYC Marathon experience. Bonus points if you can manifest perfect running weather for me and approximately 49,999 other runners on November 5.
No matter how you show it, thank you, as always, for your support.
For me, 2023 is a year of pain and uncertainty. It’s also a year of endurance and resilience. I’m determined to feel all the feelings, the unimaginable lows and the euphoric highs—all the things that make up this singular human experience. I want to navigate it in a way that would make my mom proud. She’s the one who prepared me for this life. In honor of her, I refuse to drown.
Dev on Running 