That’s my response after watching a very moving and informative film, “The Sandwich Generation,” about the challenges of caring for a parent with dementia. The 11-minute video, which was published via “Krista Tippett on Being” that is part of American Public Media, follows the story of filmmaker Julie Winokur, photographer Ed Kashi, and their two children as they care for Julie’s 83-year-old father, Herbie, who has dementia. There also is an epilogue film entitled, “Living Your Subjects,” that’s very much worth watching.
“The Sandwich Generation” provides a first-hand look at caregiving. Thanks to WInokur’s and Kashi’s artistic honesty, you get a birds-eye view into the struggles that families face when they decide to bring an aging parent with dementia into their home to live with them. In fact, Winokur and Kashi actually uprooted their family and their business from San Francisco in 2004 to move to be closer to Herbie, who lived in New Jersey, due to his worsening health.
Interestingly, both Winokur and Kashi thought they were ready for caregiving based on their coverage of the aging population for the San Jose newspaper. However, they quickly found out differently. “Until you’re dealing with it yourself and setting up support systems yourself, nobody’s prepared,” Winokur states.
The video takes you straight into their lives, as well as Herbie’s. You see Herbie’s good and bad days, and the challenge of helping him deal with daily living. You also get a heart-breaking glimpse of Herbie confusedly watching as preparations are made to sell his old house and clear it of its possessions. And you’re given a seat alongside Winokur, Kashi and the children at Herbie’s hospital bed when his health goes into a sudden downward spiral.
What I really respected most about this film is that it doesn’t sugar-coat caregiving. Everyone’s point of view, with the exception of Herbie’s, is offered. Winokur and Kashi forthrightly describe their feelings about caregiving. For instance, Winokur admitted to being “pretty tightly wound” because of the overwhelming caregiving duties and described being worried about the quality of time that she was spending with the couple’s children. However, I was most struck when Winokur actually verbalized what I believe many caregivers who are in their mid-40s (including myself) have felt upon accepting this mantle: “It’s a prime time of my life, and I basically gave it away.” Noting later in the video that she and her husband had created their family and built a thriving business, she explained that being a caregiver “wasn’t part of the plan.”
Yet, Winokur and Kashi and their kids realized the benefits of caring for Herbie, who died in 2008. In the epilogue film, Kashi said that caregiving provided the family with an understanding of “what it means to have a life well lived.”
I hope that others will be willing to so honestly share the struggles and unexpected gifts of caregiving, whether through a video, an audio tape, or a written essay. These vignettes provide a rich, yet nuanced portrait of caregiving that can effectively inform not only others who are caregiving for a loved one with dementia, but also medical professionals and policymakers. It’s well worth a look!
Published On: July 26, 2011