In The Sandwich Generation and Living With Herbie, filmmaker Julie Winokur and photojournalist Ed Kashi turned their lenses on themselves, documenting their family's day-to-day struggle to care for Winokur's father, Herbie, through dementia. The remarkable pair of films, which span two years in the family's life, poignantly reveals the tolls -- and rewards -- of care giving, particularly for Winokur, who was 42 and a full-time working mother of an eight-year-old daughter and ten-year-old son when Herbie moved in. The couple hired two daytime caregivers and one at night to help them manage Herbie's care, but, as Winokur says, this added new responsibilities she hadn't expected.
"I wish I had known just how demanding it would be to manage all of the caregivers," she says. "That was not on my radar. You don't just hire caregivers; you have to oversee them and monitor them and keep them all happy. They had issues with each other -- who did what job and who left what job for one of the others to do -- so I ended up taking on management issues. The bickering between the caregivers added a layer of stress that I never anticipated."
Having workers in their home around the clock also put added stress on the family. "The nighttime caregiver ate dinner with us seven nights a week," she recalls. "I wish I had known in advance that this is someone who becomes a family member." Winokur, who now lectures on aging and care giving in addition to making films, says that managing hired caregivers is difficult for families whether they are living with their parents or far away: "Everyone I've talked to has one issue or another like this."
Trailer for The Sandwich Generation
Although Winokur admits on film that quitting her job would have made life calmer for everyone, she felt she needed to continue working for her own mental health. "It's so rewarding to go to work and get recognition for your professional self and be financially compensated for your efforts," she says. "As anyone who has parented knows, when you're in a care-giving role, your reward is just that the person you care for is thriving. It's a big reward, but it's a little bit hard to quantify on a daily basis and feel satisfied. I think it's very hard to be so selfless that someone else's happiness is your compensation."
In the end, the patchwork quilt of care giving that she put together worked, and Winokur feels that she did well by her father, who died earlier this year. "It was such personal care. It was one on one, it was attentive, it was tailored to his needs -- it was not cookie-cutter care giving. You know, anytime you're in an institution, they can't give you the one-on-one care; it's just not practical."
Winokur is convinced that caring for Herbie at home was also the right thing to do. "It took a toll on us. It definitely aged us. It was overwhelming at times and my work suffered, but yes, I would redo it. Because on a moral and spiritual level, it was rewarding, and my conscience is very clear. I feel like I gave him the best I could."
Read the full interview with Julie Winokur.