Compassion Fatigue Strikes Family, Even Animal Caregivers
Reggie Gooch led an active social life, gardened and traveled the world with his wife Millie -- until she was diagnosed with Alzheimer's disease and soon needed round-the-clock care.
Every morning for two years, Gooch, who's now 98, rose at 4 a.m. to prepare and have breakfast with Millie. He stayed by her side all day long until 10 p.m. in their Hollywood, Calif., home.
"The furthest I could get away would be the entrance hall to pick up the mail," said Gooch, a former carpenter who helped his wife in real estate. "I don't think I could have gone on much longer."
He gave up hobbies that once gave him joy -- growing vegetables and pruning a myriad of trees in a community garden. "Everything came to a dead stop," he said.
Millie Gooch found peace and died in February at age 102, but her beloved husband of 76 years was left physically and emotionally exhausted.
Gooch, like thousands of other Americans, was suffering from compassion fatigue, a term used to describe the symptoms of secondary post-traumatic stress caused by caregiving.
Caring for others too much can hurt, according to the Compassion Fatigue Awareness Project, no matter how old you are or in what capacity you're providing care.
"You take on the pain of others and suffer, bottled up, angry and suppressing feelings," said project founder Patricia Smith. "Your impulse is to rescue. You don't have any personal boundaries, but you become isolated and lose your self-care in the process."
Without paying attention to their own needs, caregivers can turn to destructive behaviors such as substance abuse.
"It's a natural consequence of stress," said Smith. "In healthy caregiving you are 100 percent present in their care with empathy and compassion. But it's unhealthy when things in your own life are not resolved and you take on their suffering as your own."
More than 65 million Americans, about 29 percent of the population, is providing care for someone who is chronically ill or disabled and spend an average of 20 hours a week looking after a loved one, according to the National Alliance for Caregiving in collaboration with AARP.
Gooch split the caregiving tasks with a home aide, but the mental focus that was required for looking after his dying wife was draining. They couldn't let Millie out of their sight, for fear she would wander off.
"I am a strong person, but one of us had to be with Millie all the time for the last two years," he said. "I fed her by hand in bed for the last two or three weeks. It was dreadful. I had run out of gas; the engine had run out of power."
Compassion fatigue can affect anyone who is involved with the care of others -- from medical professionals to funeral directors to financial advisors "in a downturn," according to Smith.
In one shocking case earlier this year in Sunnyvale, Calif., a mother "so tired" from caring for her 22-year-old autistic son, shot him, then turned the gun on herself.
"There was help, but she couldn't find it," said Smith, who has written a guide to healthy care giving, "To Weep for a Stranger."
Smith experienced compassion fatigue firsthand, working not with people, but with animals at a shelter that housed 45,000.
"You see how society treats them, the abuse and neglect," she said. "Part of the work is also euthanasia, killing the animals you love.
"People called with all kinds of horrible situations -- rattlesnakes on their front porches to hoarders. We got 65 guinea pigs that had been starved."
Take Care of Self to Avoid Compassion Fatigue
She said caregivers have to learn to "let go" when their day is eventually done. "And try to find authentic sustainable health care practices every day to help build you back up."
For some it could be walking in nature, for others being near water. Go to a movie or have a date with your husband, she advises. Ask for help.
"Compassion fatigue empties you out and you never fill yourself up," she said.
As for Reggie Gooch, just days before his wife's death, as he was ready to collapse, his doctor of 23 years told him he needed the help of a full-time nurse. She carried the heavy load, and he was able to be by Millie's side when she died.
Today his health is good, despite an approaching 99th birthday. "I had a new hip a year ago and I don't use a cane in the house," he said. "I am very maneuverable and keep up the yard. Everyone says it looks beautiful."
"Life is getting back together again," he said. "Angela [his home aide] takes care of me and we go out to dinner and have some laughs."
Sometimes he feels guilty that Millie is not here to share his renewed vitality.
"I surely miss her, especially when I go to bed at night," said Gooch. "You can't live with someone for 76 years and not feel that. We were always love birds."
He doesn't regret caring for Millie until the end, although it nearly killed him.
"But that's part of life," he said. "We got married for better or worse. We always took care of one another."
