TOUGH ON CAREGIVERS
For John Frates, it’s a range of conflicting emotions. There’s the occasional resentment of having to sacrifice another weekend, which only makes him feel guilty. He said he encourages his other son, Andrew Frates, who was 24 at the time of Pete’s diagnosis, to take advantage of being young.
“Don’t get sucked into this black hole of caregiving,” John Frates said. “Enjoy your life. Have a successful career, get into relationships with a girlfriend that you’ve been giving up.”
But that’s tough to do, Andrew Frates told the Herald, when there’s always another task he could be helping Pete with.
“One thing that I have learned and that my brother always tried to instill in me is that you have to take care of yourself first and then take care of me, but I could never really take care of myself first, and I always wanted to put him ahead of me because he’s the one that’s sick,” Andrew Frates said. “I feel like I’m physically and mentally
100 percent.”
Although compassion fatigue affects professional health care workers as well, it’s tougher for family members, whose lives are upended and don’t have set hours or boundaries, Choi-Kain said.
She added it’s critical to work as part of a team and not to take on too much individually.
“If you see your job as one of finishing that marathon, you will take more seriously the need to sustain yourself by good self-care, and receiving your own support to keep going,” Choi-Kain said.
John Frates echoed that advice, stressing the importance of talking to friends on the outside.
“Don’t put the blinders on because you’re going to feel trapped in this thing,” he said. “You’re going to feel like you can’t get out. But ... open yourself up to other people and let them come in.”
And, as hard as it may be, John Frates said you need to find a way to take a break every once in a while.
“When I’m just waiting around for something bad to happen in here, that’s when your thoughts go to a wrong place,” he said. “Get out, enjoy, do something. Go garden. Go build something. Go look at the ocean. But distract yourself.”
The Frates family has experienced plenty of high points as caregivers too. Ranking near the top, Andrew said, was meeting New England Patriots quarterback Tom Brady and retired Red Sox slugger David Ortiz after Pete’s advocacy of the Ice Bucket Challenge raised more than $100 million for the ALS Association.
John recalled a series of adventures he and Pete went on shortly after he was diagnosed, including offshore fishing and road trips with the BC baseball team.
What continues to keep the Frates family going, even on the most difficult days, is their love of Pete, they said.
“We just want him to be with us and his family for one more day and not to have to suffer as much as he’s suffering,” John Frates said. “That’s really where we’re at right now.”