“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.”
Lauren Dykovitz, When Only Love Remains: Surviving My Mom’s Battle with Early Onset Alzheimer’s
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.
The Global Deterioration Scale
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.