As a longtime Alzheimer’s caregiver, first for my grandmother and then for my Dad, whom I cared for intensively for nine years, I have to admit that I hesitate to watch movies that involve characters who have the disease. Too often they stereotype those living with dementia as one-dimensional comical characters with erratic behaviors and their saint-like family caregivers as having only role in life: to care for them. I wind up frustrated, angry and sad. That wasn't the case when I recently watched, What They Had. The film realistically portrays the unpredictable, humorous, heartbreaking, brutal yet loving and often rewarding journey. After watching it, I somehow felt “seen”. The movie was a window into my caregiver’s soul.
In the film, Ruth (played by Blythe Danner) has Alzheimer’s disease. Her husband, Burt (brilliantly played by Robert Forster) has cared for her at home for eight years, which is true for most families. I loved it when he said he has made memories with his wife for 60 some years, so he was the best “memory care” for her. I felt the same way about my Dad. Keeping him together with my Mom until she died was top priority, and even after she passed my sisters and I provided the bulk of his care; he lived with me for six years. Even when his “knowing” of us slipped in and out, we always knew him. That history matters.
While each person who lives with dementia experiences the symptoms and progression of the disease differently, the film was remarkably authentic in its’ portrayal of Ruth’s Alzheimer’s-related behaviors, including her wisdom, insights and awareness. She was in and out of understanding, not constantly checked out. I did, however, find myself automatically wanting to talk to this family and suggest ways they could have prevented crises, kept Ruth safer at home and utilized supportive services. And I wouldn’t want people seeing the film to think the options this family ponders are the only options for care.
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The film also accurately unfolds the story of a complicated family with multiple challenges struggling to meet all of their varying needs with both internal and external conflicts. Caregiving doesn’t happen in a vacuum. We all feel torn between caring for loved ones and our other responsibilities and dreams. But the film points out that there is a role for everyone.
Ruth and Burt’s son Nick, (played by Michael Shannon) doesn’t agree with keeping his mother at home, and wants to move her to a facility because they can’t afford more help at home (she must have qualified for Medicaid because otherwise a memory care facility would also have been too expensive). Clearly he thinks she will be safer, less embarrassing and his and his father’s stress will be relieved. He is the primary support for his parents, as their daughter, Bridget (played by Hilary Swank) lives 2000 miles away.
The stress practically drips off of Nick. I identify with the pressure he feels to be constantly available to deal with myriad caregiving routines and crises that invariably arise while also trying to deal with his business and a complicated relationship. He’s a pressure cooker waiting explode. Every caregiver has felt that way at some point — usually many points.
Bridget’s life is equally complicated. She juggles a strained relationship with her daughter, who is having trouble with college, and a rocky marriage, and then life throws in the caregiving dilemma. I identify with her desire to understand and meet all of the needs, feeling utterly inadequate at times. She tries to support her dad’s wishes to care for mom at home, while making it safer for her mom, and still relieve the stress on her brother.
Courtesy of Amy Goyer
The answers aren’t clear. Caregiving is complicated and messy. We want so much to do it “right” and it’s so hard to know what is best. But isn’t that true of life in general?
My Dad ended his dance with Alzheimer’s just four months ago, so, yes, I cried while watching What They Had. I miss him and Mom terribly. But I also had the opportunity to step back and see our family’s journey as reflected in the film, and it left me feeling good about our choices; I felt validated.
Caregiving, especially dementia caregiving, pushes us, stretches us (often beyond our boundaries) and requires that we grow. Sometimes it’s uncomfortable. But, as Burt says, “Love is commitment.” It isn’t perfect and it’s a roller coaster sometimes, but you don’t run away. You learn, adapt and give it your all. Caregiving is love in action.