Recently, while my 82-year-old mom was staying with me, I noticed her stuffing her pockets with candy and cookies wrapped in tissues. She picked her teeth constantly, a nervous habit, and in the absence of dental floss broke off the sharp silver teeth
of her comb and shoved the metal between her teeth. She refused to bathe. I found myself cataloguing all this, the many ways in which Alzheimer’s disease has ravaged her brain.
Watching a parent transform into a toddler-like dependent who throws tantrums and can’t be left alone for more than five minutes is heartbreaking. But Heather Sandison, N.D., author of Reversing Alzheimer’s, says it can also be highly motivating. As founder of Solcere, a brain-health clinic, and Marama, a residential memory-recovery facility in San Diego, Sandison has helped people ditch alcohol, get moving and adopt a brain-friendly diet after watching a loved one suffer from Alzheimer’s.
Yet according to a study published in Nature Medicine, the number of Americans who develop dementia each year will skyrocket from 514,000 in 2020 to 1 million in 2060 as baby boomers age. Plus, because women live longer, they have a 48% chance of developing dementia in their lifetimes compared with a 35% chance for men. It’s a safe bet that anyone who lives long enough will suffer from some form of memory loss. To prepare for this possibility, my husband and I have set up care plans (and set aside funds) so our adult children won’t have to make tough decisions on their own.
The Power of the Pen
Since I was a little girl, I’ve been putting pen to paper to track my thoughts and feelings, set goals and make sense of the world. Apparently I’m in good company. Joan Didion famously said, “We tell ourselves stories in order to live.”
Beyond providing clarity and the opportunity for self-reflection, science suggests that writing by hand has brain-protective benefits. A January 2024 study published in Frontiers in Psychology reported that it activated more areas of the brain than typing and led to low-frequency synchronous brain waves in the back of the head (the visual cortex) via the sensory processing areas and all the way up to the top of the head (the motor cortex). “Such brain waves in exactly those parts of the brain are beneficial for learning and memory,” says study author Audrey van der Meer, Ph.D., M.Sc., a professor of neuropsychology at the Norwegian University of Science and Technology.
Another study, published in The Journals of Gerontology in 2016, reported that journal writing reduced the odds of all-cause dementia by more than 50%. Additionally, the use of more complex language in the writing predicted a 25% reduction in risk of Alzheimer’s. “You use your body and senses to a larger extent when writing by hand versus typing, and the letters you draw on paper need to be precisely formed, which requires hand-eye coordination and fine motor skills,” says van der Meer. “All that is great stimulation for the brain.”
So as I watch my mom sink into the abyss of dementia, I’ve naturally turned to writing as a lifeline. On a recent family vacation, I wrote about what we ate, what we did and who we saw, hoping to capture details my future brain might struggle to recall. It struck me that I was in essence creating revivable memories.
Soon, my catalogs of daily activities evolved into handwritten letters addressed to a “future me” —something tangible for my adult children to use as an “Instruction Manual for Mom” should I ever begin losing my mind. Each letter in the series acknowledges a harsh truth.
On Dementia
Yes, you are in the throes of dementia. I imagine it’s a special kind of hell to be locked inside a brain that can’t follow simple instructions, one that can’t make sense of anything happening in the moment. It’s natural to be scared, to act in ways that are counter to who you are, and that’s why you need skilled around-the-clock help. Your children may tell you that you’re not a burden. Trust me, they are lying.
Others address specific aspects of the disease:
On Bathing
I know you don’t think you stink, but you do. I know the water may feel like pins and needles on your thinning skin, but you need to wash yourself with soap and water. Even if it’s just a sponge bath. You also need to wear deodorant.
On Dead People
Sometimes you will think someone who is long dead is still alive. Other times you will think someone who is very much alive has passed away. It’s awkward. Uncomfortable. Sad. So sad. But people understand that you will make mistakes. People will forgive you your ailing brain.
Before you balk at the callous nature of these letters, the ones that say "Make no mistake, this isn’t going to get better," keep in mind that I’m also cataloging favorite memories. I’m taking note of simple moments in our lives, remembering my mom when she was in her prime.
Case in point: Once, while we were driving the boys home from school, my mom spontaneously belted out Barry Manilow’s “Copacabana.” My boys and I joined in, fudging the words in a sort of chorus gone wrong.
The goal is to create a paper trail of who I am and who my mom was so that if I begin slipping away, my family will have something tangible to hold on to.
The Dizzying Toll of Alzheimer’s Disease
Alzheimer’s disease is wildly unpredictable: One person with it may become combative, while another remains blissfully complacent. Unfortunately, no matter how Alzheimer’s presents, there are no effective medications for the advanced disease. The Food and Drug Administration has approved a few immunotherapy drugs for early-stage Alzheimer’s, but they require frequent IV infusions, can cost hundreds of thousands of dollars and carry risks of complications, including brain swelling (um, no thank you!).
“These new treatments are groundbreaking in that they can remove some of the disease-related proteins from the brain, but they’re not a cure,” says Jessica Z.K. Caldwell, Ph.D., director of the Women’s Alzheimer’s Movement Prevention and Research Center at Cleveland Clinic. “And while the studies show strong positive effects for white men, the sample sizes for women and people of color were too small to draw definitive conclusions.”
No one can predict whether I’ll develop Alzheimer’s disease. Even on the rare chance that I carry two copies of the APOE4 gene — the strongest known genetic risk factor for Alzheimer’s — my odds of developing the disease can be modified by lifestyle changes. Experts estimate that nearly half of dementia cases, even those that are genetically linked, might be delayed or prevented with certain lifestyle and behavioral changes.
It’s never too early to implement changes that foster better brain health, but it can be too late. My mom’s situation, unfortunately, falls into the latter category.
A Road Map for the Future
By the time the cognitive changes of Alzheimer’s appear, the disease has been developing for decades. But much remains within our control, stresses Caldwell. In fact, a 2024 report published in The Lancet linked 14 modifiable factors to reduced dementia risk — things like maintaining a healthy weight, exercising regularly and maintaining strong social connections.
In addition to adopting such strategies, Caldwell says challenging your brain is critical: “If you’re coasting through life relying on devices instead of your own learning and memory, you’re missing an opportunity to strengthen neural circuits, grow new neurons and protect your brain.” With that in mind, I’m taking a proactive approach. Instead of consulting Siri for driving directions, calculations and random trivia, I’ve been using my head to come up with the answers (or doing the work to find them). I eat a diet rich in omega-3’s and blueberries. I exercise daily, meditate a few times each week and prioritize my oral health. And, of course, I write.
But no matter how much I prepare, I know there are no guarantees. That’s why my husband and I are open with our children about my mom’s decline — so they’ll understand what may lie ahead for us and how we hope they’ll navigate the disease should we follow the same path.
I hope my boys will never have to give me the letters I’ve written; I hope that the steps I’m taking now will protect me over the long haul. But if things don’t work out in my favor, I view the written word as a prescription for healing — that of my children as much as my own.
