Alzheimer’s isn’t sugar-coated in ex-Montrealer’s deeply personal documentary

When he received a diagnosis of early-onset Alzheimer’s disease in 2019, Charlie Hess was only 57. He’d been feeling foggy, he said.

His wife, Heidi Levitt, a Los Angeles casting director and Montreal native, has made a deeply personal film documenting their journey as they navigated the diagnosis and its effect in real time over a four-year period.

Walk With Me has its Montreal première on Wednesday, May 20.

In it, we follow Hess and Levitt as they meet physicians and researchers and come to learn more about a future neither can control. It is intercut with archival footage, including video from their wedding and images of their adult daughter and son as small children.

One reason Levitt, who wrote, directed and co-produced Walk With Me, wanted to make the film was to raise awareness of dementia and help break the stigma around it, she said in an interview. And she wanted to give her husband purpose in his role as the star. It’s her first film.

“This has been hard,” Hess, now 64, says at one point in the 90-minute documentary. He was an accomplished creative director, graphic designer and illustrator. Now who is he? “I know it is going to get harder, but I trained myself in these last few months to get rid of all the BS and focus on what is important — and that has made me lighter.”

Said Levitt, also 64: “I knew the disease wasn’t stopping. I knew I wanted to do it over time. We all know what the end stages are: They are not pretty and that’s what people think of. But I wanted them to see that people are living with it.

“Charlie is worse, but he is very, very present,” she said. “He has moved from being an art director to doing collage: He still makes pictures.

“He has a great sense of humour. He is not as articulate, but he is there. I think Charlie’s superpower is that he is still emotionally aware.

“He is losing his words. But he is still OK. We can stand together in our old self. People see us as a couple. And I am cutting his food and feeding him.”

She knows a time may come when he is unable to swallow — but last summer he learned to play pickleball.

Walk With Me was also an opportunity to show the effect of the disease on the family and, in particular, on her as a caregiver.

At one point in the film, Hess tells Levitt that she is bullying him. Why did she include that? “I wanted to be truthful. I didn’t want to sugar-coat everything. It can be lovely, but it is not always; it is inconsistent. The thing about this disease is that it is filled with so many unpredictable ups and downs,” she replied.

Walk With Me was an opportunity for Heidi Levitt to show the effect of Alzheimer’s disease on her family and, in particular, on her as a caregiver. (Courtesy of Heidi Levitt)

“Alzheimer’s doesn’t happen to one person,” Levitt wrote in an opinion piece for USA Today. “It happens to the entire family. Caregivers like me barrel along, solving problems, chasing hope, forgetting to breathe. Until something breaks.”

The Canadian Centre for Caregiving Excellence calls caregivers “the unseen and unacknowledged foundation upon which our health care, social services and disability support systems are built.”

Walk With Me had its Canadian première in Toronto last July during the Alzheimer’s Association International Conference. It has been picked up by the national distribution platform for PBS and should air in the fall, Levitt said.

“My hope is that there is a home for this movie,” she said. “Our story is so many people’s story.”

AT A GLANCE

Walk With Me is presented by the Cummings Centre, with support from the Canadian Centre for Caregiving Excellence. It will be screened Wednesday, May 20 at 6:30 p.m. at the CineStarz Deluxe Cavendish, 5800 Cavendish Blvd., in Quartier Cavendish. A Q&A with Heidi Levitt will follow. The $36 admission charge includes popcorn and a drink. Reservations are required at 514-343-3510.

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