Robin Williams Had Lewy Body Dementia — Now, a New Documentary Explores Its Heartbreaking Impact on Caretakers (Exclusive)
"Every day there’s new grief," says a caretaker in PEOPLE's exclusive clip from the documentary 'Facing the Wind'
DOC NYC
Carla Preyer (right) with her husband, Patrick.A new documentary Facing the Wind follows two women, Linda Szypula and Carla Preyer, who forge a friendship as they care for their husbands, who have Lewy Body Dementia
The progressive disease, which actor Robin Williams had at the time of his death, is marked by agitation, hallucinations and cognitive decline
In this exclusive clip, the women share their struggles as caregivers, saying they are "suffocating"
The heartbreaking toll of dementia is explored in a new documentary, Facing the Wind, which takes an intimate look at how Lewy Body Dementia impacts not only those with the disease, but also the people who love them.
The film centers around two women — Linda Szypula and Carla Preyer — whose husbands Jim and Patrick, respectively, have the progressive disease. The two women meet in a support group and forge a friendship as they deal with the mental and emotional task of caregiving for someone with Lewy Body Dementia (LBD)
Lewy Body Dementia (LBD) is the second-most common form of dementia after Alzheimer’s disease; However, unlike most well-known forms of dementia, LBD isn’t characterized by memory loss. As the Mayo Clinic explains, those with LBD may have visual hallucinations, problems with movement that mimic the symptoms of Parkinson’s disease, depression and cognitive issues.
DOC NYC
Jim and Linda SzypulaActor Robin Williams was diagnosed with LBD before his death by suicide in 2014; his widow Susan Williams said that the symptoms of LBD contributed to his death.
“It was not depression that killed Robin,” Williams told PEOPLE. “Depression was one of let’s call it 50 symptoms, and it was a small one.”
In Facing the Wind, Linda and Carla lean on each other as their husbands’ symptoms get progressively worse; Carla and Patrick renew their vows at home amid Patrick's increased agitation, which causes them to be largely housebound. Meanwhile, Linda and Jim's road trip is cut short as he struggles with intense fear of being away from home.
At one point, Linda and Carla join other caregivers from their support group on a rare getaway.
In this exclusive clip, Carla explains that “Patrick’s awake time is shrinking,” saying that her husband's disease is “progressing.”
Related: Faith Hill Opens Up About Losing Her Father to Lewy Body Dementia: 'Tim Would Visit Him Daily'
“Every day there’s new grief,” shares another member of their support group — which prompts Linda to break down as she shares her struggle as a caretaker.
“It's just hitting me that I'm going back to that tomorrow. I'm going back to the reality, and what if I'm not strong enough to do it,” she says. “I'm suffocating … he would be there for me and would never be like this. And the thought of going home — this is how I feel when I walk in my house. I feel like I can't even breathe.”
“Something my mom always said: 'This too shall pass,' ” Carla says, before embracing Linda.
The film is directed by Deirdre Fishel, who helmed the police documentary Women in Blue, about Minneapolis Police officers who tried to reform their department in the years before George Floyd’s death in 2020.
Facing the Wind will premiere at DOC NYC — the largest documentary film festival in the U.S. — on Nov. 20. Tickets to attend the in-person event, or to stream Facing the Wind online (from Nov. 21 until Dec. 1) are available here.
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