‘COMPASSION FATIGUE’
Frates family, others face big challenges
Nearly six years after his diagnosis, Pete Frates’ family is vowing not to let ALS tear them apart, even as the former Boston College baseball star nears the final stages of a disease — where constant care and middleof-the-night emergencies can test even the strongest bonds.
“It’s tough. It’s taken a toll,” Pete’s father, John Frates, told the Herald. “It tries to take a toll on all of us. It tries to destroy our relationships, this disease, and we won’t let it. We have to fight against it because it’s easy to be upset with each other. ‘You did more than I did’ or whatever. But it doesn’t matter. All that matters is his health and now his comfort as he’s near the end stages.”
Caregivers of patients with chronic illnesses, like the Frates, spend months or even years putting their loved ones first and themselves a distant second. They deal with stressful daily tasks and unexpected complications, not to mention being reluctant firsthand witnesses of a disease’s heart-wrenching devastation.
The long-term effects can lead to what experts have dubbed “compassion fatigue.”
“Those who have compassion fatigue tend to feel a state of tension and preoccupation with those who are suffering and relatedly feeling a sense of responsibility to do something about it,” said Dr. Lois Choi-Kain, a psychiatrist at McLean Hospital in Belmont.
Immediately after Pete Frates’ diagnosis in 2012, the family agreed it would battle the disease together.
Frates now receives 24-hour-a-day care with a nurse constantly by his bedside and his family never truly off the clock.
“We can get a call in the middle of the night by the nurse on duty saying we need your help right now,” John Frates said. “We live with that at all times. There’s a profound anxiety with this caregiving thing that I don’t think people realize.”