A month before my grandfather William passed away, I sat beside him in the hospital, pushing a roll of uneaten sushi around a plastic plate. The rest of my family had gone in search of coffee while I remained behind, an increasingly regretful volunteer.
My appetite faded as I watched three nurses tend to my grandfather. One changed the bed sheets, one lifted his gown and packed new gauze into weeping sores, and another tried to feed him a dinner of soft foods: mashed potatoes, shredded chicken, and ice cream. When he couldn’t open his mouth enough to accept a spoonful of gravy, they offered him a sip of something strawberry-pink from a large Solo cup. He couldn’t get his body to react, to swallow, and the liquid dribbled down his chin.
I turned and looked out the window, stewing in feelings of nausea and discomfort. It hurt to see my grandfather like this; just a year ago, he’d been able to walk on his own, hold a fork without dropping it, and eat regular meals. However, it hurt even more to see him smiling. Always smiling, thanking the nurses every time they mopped up a spill, apologizing whenever he couldn’t do what they asked, laughing at the jokes they cracked—ones I never found funny.
His eyes held the weight of a man too young to die, of a parent and husband too scared to leave his family, of a scholar knowing, with clarity, how his body betrayed him. And yet he smiled as Lewy body dementia (LBD) stole decades from his life. And my grandmother smiled too—a caregiver’s smile tight with agony and dread—as LBD destroyed the man she loved.
Doctors diagnosed William with Lewy body dementia (LBD) three months after he turned 73. He’d retired from his position as a church janitor in 2012 and from a long career as an Air Force Colonel over a decade before that. Retirement—something he’d looked forward to—ushered in a new era of planning with his wife, Nancy. They wanted to travel, learn new languages, hold their great-grandchildren, and decorate the house for holiday gatherings.
Then, almost overnight, LBD rode in on the tailwinds of a bitter tide. William’s muscles stiffened. Sleep eluded his overtired mind. He became too exhausted to run errands, and too depressed to eat, as the disease spread like hairline cracks through his memories and awareness.
Conversations that were once soft and easy became battles he waged on a field of cobwebs and shadows, rummaging for words he felt he should know but simply couldn’t find. Even asking “how are you today” became a dreaded interaction. As he searched for a response, I’d watch the light in his eyes dim, watch frustration replace love and fear whisk him to a deep, dark place no one in my family could reach.
We watched these changes in disbelief. As William’s LBD progressed, much more rapidly than his doctors expected, I started spending nights at my grandparents’ house. I ran errands, got the mail, watered plants, and cooked dinner whenever Nancy had her hands full. This unique position of caregiving became the fuel I used to explore the finer points of patient-caregiver relationships. I couldn’t ease my grandfather’s suffering, take away his pain, or block out my own. But I thought I might be able to help my grandmother navigate her own grief as she assumed a new, lonely role in William’s life.
The how’s and why’s of dementia with Lewy bodies are difficult for most caregivers to grasp. LBD, the most common neurodegenerative disease after Alzheimer’s, affects over 1.3 million people in the United States. Genetics don’t matter; neither does diet or gender—LBD takes anyone it can get. Men and women, omnivores and vegans, runners and couch potatoes, the partiers and the pious. While this should be somewhat soothing—to know that William couldn’t have predicted or avoided his illness—it doesn’t make his loss any easier for my family to bear.
“LBD is a disease that doesn’t come with a handbook,” Nancy told me after a particularly trying day. Her voice walked the edge of a cliff made of tears. “It’s different for every patient, which makes it hard for me to know what to do.”
Neurologists say LBD isn’t hereditary. Instead, the disease acts like cancer. The protein deposits normally found in the brain go rogue and form in unusual places, like on nerve cells. This change is irreversible. As more deposits appear, they disrupt functions we often take for granted: walking, talking, even breathing. But this knowledge provides little comfort to the caregivers. All they want is to anticipate the disease’s modis operandi (M.O.) to relieve their loved one’s pain. Unfortunately, LBD eludes predictability, changing its M.O. at a whim—much like how a toddler’s emotions swing chaotically between the fixed ends of a pendulum.
My grandmother’s struggle with LBD started a year before William’s doctors finally managed to diagnose his illness. Detection methods for the disease are currently underdeveloped, so it’s hard to pinpoint if a patient has dementia with Lewy bodies or something like Parkinson’s or Alzheimer’s—diseases that share LBD’s signs and symptoms. A 2010 caregiver survey reviewed in The American Journal of Geriatric Psychiatry reveals how lucky my grandparents were to only wait 12 months for a verdict; nearly 33% of 1,000 patients had to wait two (or more) years before their doctors determined the name and nature of the disease.
William visited three doctors in 2016. They scheduled him for multiple brain tests and diagnosed him twice (incorrectly) before a neurologist finally settled on Lewy body dementia. Like many caregivers, my grandmother faced uncertainty and fear throughout this process. Each hospital visit, brain scan, blood test, and resulting medical bill left her sleepless and agitated, often unable to eat more than a nibble here and there. When the neurologist named William’s true illness, it brought her none of the comfort she’d anticipated. LBD is a notoriously difficult disease to manage. There’s no cure, and the life expectancy is short: between two and five years.
Like with many other diseases, caregivers of LBD patients often wonder if they could’ve done something differently—if there were warnings they missed or early symptoms they ignored. For example, the survey reviewed by The American Journal of Geriatric Psychiatry reported that 19% of LBD patients were initially diagnosed with Major Depressive Disorder. “Patients with DLB [disease with Lewy bodies] were more likely to have a history with depression,” they found. Researchers also believe issues like rapid eye movement (REM) sleep behavior disorder or depression can appear a decade before LBD does.
My grandmother, mother, and I once stood in the hall of a hospital wing, dissecting our memories of William’s demeanor—the way he’d acted in his mid-sixties, a decade before. I’d been in my teens at the time and remembered my grandfather’s stillness. He’d sleep during the day, taking “naps” that grew ever longer but never satiated his weariness. Daily jogs slowed into weekly walks as joint pain appeared in his knees and feet. A ghost peered out through his eyes, concealed only by crinkled smiles and soft laughter.
Were these signs of depression, we wondered? Could we have gotten him treatment or preventive care earlier and avoided the worst of LBD’s tricks and tragedies? Would that have saved him—or made his death easier to handle?
After William’s diagnosis in 2016, life changed rapidly, and not for the better. Over two years passed, and every one of those 1,000 days increased my grandmother’s anguish and stress.
“There’s a marked difference in William now,” Nancy told me in March 2019, elbow-deep in suds. We were in the kitchen late at night, whispering fervently to each other as coffee percolated into an eight-cup pot. My grandfather slept down the hall. “I have to help him with everything. I give him his pills: one twice a day and the other three times a day. I help him dress or he’ll just put a shirt over his pajamas.” She sighed, and her fingers stilled around a green, antique Depression glass. “He falls a lot. Sometimes he’ll miss the bed. I try to grab him, but there are times I can’t or I’ll fall too.”
I understood her fear. She wanted desperately to protect him, but she also needed to protect herself. If she broke her hip or ankle, he’d lose his caregiver. The stress of having nurses come to the house often made him worse, stealing his ability to communicate for the rest of the afternoon or disrupting his evening naps. Seeing her hurt could do that too.
The closer we got to William’s death, the more Nancy struggled with her emotions—negative ones, and mostly grief. These feelings, I later learned, are entirely normal for Parkinson’s and LBD caregivers. A 2019 article published in the Journal of Geriatric Psychiatry and Neurology found the majority of surveyed spouses care for their patient, on average, 84 hours a week; the equivalent of two full-time jobs. Many caregivers, especially those overseeing an LBD patient, experience “significantly higher rates of burden, resentment, and depression,” as well as “anxiety and lower levels of mental health.”
I couldn’t blame my grandmother for her bitter attitude—would I do any better in her shoes, knowing I couldn’t do anything to stop the pain and not knowing what tomorrow might hold? An article in the British Journal of Psychiatry found LBD has “a highly individual course” of neuropsychiatric symptoms, meaning it’s hard to anticipate what the disease will look like day to day, or even hour to hour. We found this to be very true. At times, LBD acted like Parkinson’s: William slept poorly, and his hands and legs locked up, cramping into a grip not dissimilar to rigor mortis. Other times, LBD morphed into something else entirely—something we couldn’t quite define. These were the symptoms that made our skin crawl: he’d resume conversations from 30 years ago, ask about people long dead, take notes for imaginary phone calls in unintelligible handwriting, or claim he saw figures in the hallway.
For three years, William fought for his life. But LBD made it abundantly clear: there was no truce to be had on this battlefield, no way for us to root the disease and its excess proteins from my grandfather’s brain. Lewy body dementia broke the rules of war while we looked on, frozen. It refused to follow a predictable path, and it stole our loved one from us mercilessly—cruelly—while we watched. How were we not supposed to take this flagrant betrayal personally?
My family lost our fight in October 2019, but the battle isn’t over for others, including the many tireless caregivers hoping for a miracle (or at least for a mutual understanding with LBD). Thankfully, resources now exist to help people like my grandmother. The Lewy Body Dementia Association provides caregivers with coping methods they can use to help their spouses, parents, or friends prepare for the pitfalls of LBD. Cities are also creating programs, in safe spaces, that support caregivers. In Minnesota, where Nancy lives, the City of Minnetonka hosts a weekly support group for those affected by dementia or similar mental impairments. Nurses attend as well to answer any questions caregivers, or the patients themselves, might have.
Researchers have also published new care techniques to help providers navigate the difficult waters they face. One study in the journal Environmental Health and Preventative Medicine encourages caregivers to avoid communicating with facial expressions. Instead, the authors recommend employing dominant senses—including speech and touch—to connect with loved ones, as many patients with late-stage LBD fail to recognize or understand visual emotions like fear, sadness, and anger.
In the realm of treatment, medical practitioners and scientists are making progress—however slowly—toward finding a cure. Neurologists at the University of Pisa are testing medications that could show positive benefits in LBD patients, and recent clinical trials show treatment for the disease may work if symptoms are managed through a well-rounded, inclusive, and individualized plan created by doctors and caregivers together. “Treatment of any single symptom should not be done in isolation,” one review suggests. “A[n] … interdisciplinary approach is likely to produce the greatest therapeutic gains.”
The LBD handbook my grandmother longed for doesn’t exist. However, the caregivers who still have a chance to overcome this disease—to protect their loved ones and turn the tide of battle—hold out hope for a better future. An easier one. One with a cure.
“I try to encourage Bill,” my grandmother told me a few months before he passed away. I remember how she snuck a Girl Scout cookie from an open tin and studied it thoughtfully, perhaps pondering what the future would hold, whether it would be terrible, or sweet, or something in between. (Looking back now, we’d all call it heartbreaking.) “I tell him he’s brave,” she said. “He gives me a strange look when I say this, but I think it helps.”
I understood then what she meant. I still do. Our job as caretakers was to support him, to shoulder his pain, soothe his aches, and never let him forget our unending love for him. We did this all day, every day—for as long as he could fight.
And he never had to fight LBD alone. We made sure of that.
Anna Sofia is an Arizona-based science writer and Johns Hopkins University graduate. When she’s not browsing the nearest library for books to read, she spends her time brushing up on the latest neuroscience research, playing with her two cats, and enjoying a cupboard full of tea. More of her writing can be found on Medium.