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There is one particular low moment as a caregiver that Stacey Dunn, 52, of Seattle, will never forget. Her daughter, Minnie, 26, had been born with autism and cerebral palsy, and in 2019, just before the COVID-19 pandemic shut down the world, she was diagnosed with bipolar disorder. Dunn is a caregiver for five people: her daughter and husband, her parents who live nearby in Seattle and herself (as a three-time cancer survivor).
Minnie was discharged from a local hospital after Dunn was told she could “admit her after she attempts suicide.” That sent her on a desperate hunt to find a hospital that would take her daughter and set up a treatment plan around her dual diagnosis. Finally, after innumerable rejections, she located a facility in Southern California and traveled there with her daughter. Dunn rented an apartment and traded off with her parents to stay with Minnie while she traveled home to receive her cancer treatments. While going back and forth to California, Dunn’s husband, Tim, was hospitalized for internal bleeding. He was later diagnosed with myalgic encephalomyelitis and chronic fatigue syndrome and has never fully recovered. “It was terrible,” Dunn recalls, “because I couldn’t get us all in the same place, and I couldn’t be in two places at once.”
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Dunn is white, and her husband is Asian. Minnie, who resembles her father, was also a potential target of the hate and violence unleashed in the Asian American community because of misinformation over COVID-19. “In my case, watching the news or seeing mentally ill people being harassed or arrested, especially if they spoke differently or were having an episode related to their illness, was a daily reminder of what could happen to my daughter if I wasn’t there to protect her.” Dunn ultimately chose to stay in Southern California with Minnie but worried every day about not being by her husband’s side.
Jerri Rosenfeld, 66, is the director of the Ken Hamilton Caregivers Center at Northern Westchester Hospital in Mount Kisco, New York. She works with caregivers at every stage of their journey, including the end stages. “It is essential to listen with a nonjudgmental ear, validating all that the caregiver is feeling, whether positive or negative,” Rosenfeld says. When a family member is suffering or near the end of life, it is perfectly natural for a caregiver experiencing difficulty to have fleeting thoughts about when their loved one will die. Some caregivers need permission to vocalize honest thoughts like, She wasn’t there for me as a mother; now I have to take care of her! These thoughts can bring feelings of guilt and shame, which are a normal part of the caregiving journey.
Dunn can relate. “The bipolar disease turned my daughter into a monster at times,” she says. “Her extreme anger and mood swings were painful, and most of her emotional outbursts were directed at me. We never stop loving our children, but there were days it was extremely hard to be in my shoes.”
Even though she has accepted her duties as a caregiver, the extreme emotions that surround her each day illustrate something that most caregivers are reluctant to say aloud: While we may fundamentally love the person we look after, that doesn’t mean we always like them. Nor does it mean we embrace all aspects of the task. So how does one show up as a caregiver day in and day out and maintain a sense of sanity if the family member is difficult?