November 23, 2024
by Carla Hay
Directed by Deirdre Fishel
Culture Representation: The documentary film “Facing the Wind” takes place in the United States and features a predominantly white group of people (with a few African Americans and Asians) who are personally affected by Lewy body dementia.
Culture Clash: People with Lewy body dementia and their caregivers experience emotionally and physically painful stresses in their relationships.
Culture Audience: “Facing the Wind” will appeal primarily to people who are interested in documentaries that show the realities of caregivers of people who have terminal illnesses.
The memorable documentary “Facing the Wind” takes a candid look at two married couples coping with each husband having Lewy body dementia. It shows real and raw experiences from the caregivers’ perspectives. “Facing the Wind” had its world premiere at the 2024 edition of DOC NYC.
Directed by Deirdre Fishel, “Facing the Wind” is not a long feature-length film (its total running time is only 58 minutes), but it can leave an impact on viewers, regardless of whether or not viewers have personal experiences with Lewy body dementia or terminal illnesses. Lewy body dementia is a brain disease that has symptoms which are similar to Alzheimer’s disease, such extreme forgetfulness, hallucinations, declining motor skills, frequent confusion and big mood swings. However, as explained in the documentary, people with Lewy body dementia (which currently has no cure) are often misdiagnosed as having a personality disorder or a mental illness because someone with Lewy body dementia could not have symptoms for several days in a row.
The two middle-aged married couples who are the focus of Facing the Wind” are Linda Szypula, Jim Szypula, Carla Preyer and Patrick Preyer, whose ages range from their late 50s to mid-60s at the time this documentary was filmed in 2022 and 2023. All of their adult children are briefly shown in the documentary. However, the wives, not the children, are primary caregivers of their terminally ill husbands.
Linda and Jim lived in Sicklervlle, New Jersey, when the documentary began filming. The couple later moved to New Orleans to be closer to their son Andrew, who is the eldest of their three adult children. Carla and Patrick lived in Sacramento, California, during the filming of the documentary. Linda, who has a very outspoken personality, gets the most screen time in the documentary.
Linda (a former science teacher) and Jim met in their early 20s, when they were co-workers at Morey’s Piers, an amusement park in Wildwood, New Jersey, where he was an electrician. As Linda describes it in the documentary, it was attraction at first sight for her when she saw Jim, and she predicted to a friend shortly after seeing Jim for the first time that she would marry him. Linda says she had a “rough childhood,” and Jim was like her “knight in shining armor.”
Patrick (who used to be an operating nurse at a hospital) and Carla (who was the owner of a beauty salon) dated and got married when they were in their 30s. They have an adult son together named Patrick Jr. (P.J.), who lives a “five-and-half hours away,” Carla says in the documentary. Carla describes how Patrick loved his job but had to retire because he became forgetful on the job.
Carla also says that she had to “fight” hard to get the correct diagnosis of Patrick’s health issues because he kept getting misdiagnosed. It wasn’t until she went out of her health insurance network and went to Stanford University Medical Hospital that Patrick was properly diagnosed with Lewy body dementia. Footage of Patrick and Carla together shows him to be at a stage where he has to have his activities closely monitored and cannot be left completely alone.
Carla describes how Lewy body dementia robs people of their original personalities. She says before Patrick got Lewy body dementia, Patrick had a great sense of humor. “He prided himself on taking care of people he loves,” she adds. After getting Lewy body dementia, Carla says, “The goofy side of him … that all disappeared.”
And instead of taking care of people, Patrick needed a full-time caregiver. Carla says in the documentary that she eventually had to close her salon to become Patrick’s caregiver. Later, in the movie, Carla mentions that she followed people’s advice to get a part-time caregiver to help her.
In the 1980s, Jim used to be in a band called the McLean Affair. The documentary shows that he still knows how to play guitar, which he does as a source of comfort, even though it’s obvious that his guitar-playing skills are now limited to basic strumming. Patrick isn’t as lucky. As shown in the documentary, his motor skills have deteriorated to the point where he sometimes has difficulty walking. When he does walk, he has a tendency to wander outside and get lost if no one is looking after him.
In order to cope with the stress and not feel so isolated, Linda started an online support group for caregivers of people with Lewy body dementia. Carla is one of the members of the support group. Through the support group, she befriended a Lewy body dementia patient named Curry Whisenhunt (from Kansas City, Missouri), who started his own online support group for people with Lewy body dementia. Together, Whisenhunt and Linda co-host a podcast called Lewy Body Roller Coaster.
“Facing the Wind” includes footage of some of the support group sessions that take place online and in person. These sessions show the realities that caregivers (who are often portrayed as unrealistically saintly in movies and television) have very real human flaws that affect their caregiving. Many of the caregivers admit that they lose their tempers and feel a lot of resentment over how their loved ones with Lewy body dementia take them for granted or mistreat them when the patients in a bad mood. Many of the caregivers talk about how caregivers often have no one looking out for caregivers, who are often exhausted and stressed-out.
Meanwhile, many of the people in Whisenhunt’s support group share heartbreaking stories of being misunderstood and having suicidal thoughts. Lewy body dementia patients say they feel a sense of hopelessness and shame that they can no longer physically do a lot of things they used to be able to do, or they have severe memory lapses about their loved ones. They also feel guilty that their loved ones who are full-time caregivers have had to upend their own lives and careers to become full-time caregivers. The combination of shame and guilt can lead to patients losing their tempers, with their caregivers often the targets of their anger.
One of the more interesting aspects of the documentary is when Linda decides that she and Jim need a change of scenery to get away from their house for a while. And so, Linda decides they will go on a cross-country road trip by RV to fulfill Jim’s dream of visiting national parks and to visit other people in Linda’s support group. Matt “Manny” Gilliano, a friend of Linda’s from high school, is along for the trip to help with the driving.
During the trip, Linda and Jim visit Curry Whisenhunt (who has a mostly upbeat personality) and his wife, who is also named Linda. Both of the Lindas share their experiences of how they’re coping with caring for a spouse with Lewy body dementia. Linda Szypula says she’s the type of person who can’t hold her emotions in (for better or for worse), while Linda Whisenhunt says that she’s found it best to stay in the background and be reserved because Curry has a “take charge” dominant personality.
“Facing the Wind” isn’t all gloom-and-doom depression. There are many tender and sweet moments that show these spouses still love each other a lot, despite the trauma of dealing wth this horrible disease. And one of the more memorable scenes in the move is when Linda Szypula and Carla Preyer meet up with two other women from their support group—Jax Brown and Wendy Cogan—for some friendship bonding.
When people take the marriage vows that say that they will stay in the marriage “in sickness and in health,” there’s no real way to prepare when those marriage vows are put to the test. “Facing the Wind” shows only the perspectives of people who stay in a marriage to someone with a terminal illness. An unidentified man in Curry Whisenhunt’s support group wasn’t so lucky because he says his wife left him because she didn’t believe he had Lewy body dementia. That type of abandonment is not explored in this documentary.
Carla Preyer comments on why she stayed married to her husband Paul after the Lewy body dementia diagnosis: “He’s my soul mate, my spiritual partner. And that just doesn’t go away.” One of the most heartwarming parts of the documentary shows Carla and Paul renewing their marriage vows.
“Facing the Wind” doesn’t have a lot of medical discussions about Lewy body dementia. This is not the type of terminal documentary that shows people at medical checkups or lengthy interviews with medical experts. There is a very brief clip toward the end of the documentary of Linds Szypula and Curry Whisenhunt interviewing Dr. Jason A. Cohen of Montefiore Medical Center, located in New York City.
This is a documentary that is ultimately a bittersweet and intimate story about how four spouses affected by Lewy body dementia coped with it during the disease’s later stages. It’s a documentary that will make viewers think about what they would do if they were the caregivers or the ones who needed the care. And ultimately, “Facing the Wind” will give viewers an appreciation of how precious life is, even with stressful difficulties, and how to keep going and move forward when those difficulties seem to be unbearable.
