Ann Brenoff wasn’t worried when her dogs returned from a walk without her husband in 2015. He often dropped their leashes and let them race up the steep driveway to their home in the canyons of Los Angeles. “But after 20 or 30 minutes, we said ‘OK, where’s Dad?'” said Ms. Brenoff, 73, whose two children were then teenagers.
They found him lying at the bottom of the driveway. He had collapsed walking up the street and crawled home. Ms. Brenoff’s husband was soon diagnosed with acute kidney failure and needed round-the-clock care.
Three times a week, she made the hourlong drive to his dialysis appointments or arranged for someone else to take him. She cooked separate meals so he could follow a special diet and squared off daily with their health insurance company. She learned that a bit of Vicks VapoRub under her nose helped mask certain odors as her husband’s condition deteriorated.
“You wake up one day and realize you’re not a partner and a wife anymore,” Ms. Brenoff said. “You’re a full-time medical case manager.” She stopped seeing friends and gained 20 pounds. Her blood pressure climbed.
And she got really angry.
Around 53 million Americans are caregivers for a family member or friend with a health issue or disability, and nearly a third spend 20 or more hours a week in that role. The Centers for Disease Control and Prevention, which calls caregivers the “backbone” of long-term home care in the United States, has warned that caregivers face many risks — anxiety and depression, chronic health conditions, and financial strain, to name just a few. Yet experts said many caregivers feel they cannot speak openly about their frustration and anger.
“The stress is just monumental and constant,” Ms. Brenoff said. “I was pissed off.”
“The stress is just monumental and constant,” Ms. Brenoff said. “I was pissed off.”
“There’s this myth of the loving caregiver,” said Allison Lindauer, an associate professor of neurology with the Oregon Health & Science University School of Medicine. But she and other experts said that anger and frustration are inevitable parts of the caregiver experience, and that it is important to normalize those feelings.
“There is a lot of stigma,” Dr. Lindauer said.
Allison Applebaum, the director of the Caregivers Clinic at Memorial Sloan Kettering Cancer Center and the author of the forthcoming book “Stand By Me,” said that among the 4,000 or more caregivers she has worked with, she has yet to meet one who has not expressed some form of anger.
Often just beneath that anger is a “deep well of sadness,” Dr. Applebaum said. Many caregivers feel powerless, she said, and can not control what happens to the person they are caring for, or to themselves.
“Many caregivers can’t plan for the next day or week, let alone the next month or year,” she said. “And that’s maddening.”
This has been a source of frustration for Heidi Warren. For more than eight years, Ms. Warren, 48, has been a full-time caregiver to her mother, whom she lives with in Greenville, Pa. Her mother, 76, had complications from spine surgery in 2015 and developed chronic pneumonia, which has landed her in the hospital more than 30 times.
The pair are best friends “so it’s a labor of love,” she added. But many caregivers don’t share that bond.
“Making an unrecognized sacrifice was a struggle,” John Pool, 39, shared. “The first year or so was very chaotic in the sense that I was just learning as I went,” Mr. Poole, who lives in Sicklerville, N.J., and had to leave his job in state government because of the demands of caregiving. “A lot of people’s frustration – I know mine – was that you’re doing very valuable work that is really not recognized by the outside society,” he said.
Long-term caregiver stress has been tied to health issues, like diabetes, arthritis, and heart disease. Given that, Dr. Applebaum advises caregivers to address the physical effects of anger, whether through breathing exercises, a hot shower, or a run — whatever helps. Sometimes, she said, caregivers need a private place where they can just scream.
“A lot of caregivers are afraid to express their anger because they feel guilty,” Ms. Levin said.