The silent anger of healthcare providers

Ann Brenoff wasn’t concerned when her dogs returned from a walk without her husband in 2015. He often let go of their leashes and let them race up the steep driveway to their home in the Los Angeles canyons. “But after 20 or 30 minutes we said, ‘Okay, where’s Dad?’” said Ms. Brenoff, 73, whose two children were teenagers at the time.

They found him lying at the bottom of the driveway. He had collapsed as he walked out into the street and crawled home. Mrs. Brenoff’s husband was soon diagnosed with acute renal failure and required 24-hour care.

Three times a week, she made the hour-long drive to his dialysis appointments or arranged for someone else to drive him. She cooked separate meals so he could follow a special diet and arranged daily contact with their health care provider. She found that putting a dab of Vicks VapoRub under her nose helped mask certain odors as her husband’s condition worsened.

“You wake up one day and realize you’re not a partner and a wife anymore,” Ms. Brenoff said. “You are a full-time medical case manager.” She stopped seeing friends and gained 20 pounds. Her blood pressure rose.

And she got very angry.

About 53 million Americans are caregivers for a family member or friend with a health problem or disability, and nearly a third spend 20 or more hours per week in that role. The Centers for Disease Control and Prevention, which calls healthcare providers are the “backbone” of long-term home care in the United States, has warned that healthcare providers face many risks: anxiety and depression, chronic health conditions and financial strain, to name a few. Still, experts say many caregivers feel they can’t talk openly about their frustration and anger.

“The stress is just enormous and constant,” Ms. Brenoff said. “I was angry.”

“There is a myth of the loving caregiver,” says Allison Lindauer, associate professor of neurology at Oregon Health & Science University School of Medicine. But she and other experts said anger and frustration are inevitable parts of the caregiver experience, and it’s important to normalize those feelings.

“There’s a lot of stigma,” said Dr. Lindauer.

A loss of control

Allison Applebaum, director of the Caregivers Clinic at Memorial Sloan Kettering Cancer Center and author of the forthcoming book “Stand By Me,” said that among the more than 4,000 caregivers she has worked with, she hasn’t met anyone who hasn’t done. expressed some form of anger.

Often just beneath that anger lies a “deep well of sadness,” Dr. Applebaum said. Many caregivers feel powerless, she says, and take on the role out of necessity or a sense of duty. They have little control over what happens to the person they care for, or to themselves.

“Many caregivers can’t plan for the next day or week, let alone the next month or the next year,” she says. “And that’s maddening.”

That was a source of frustration for Heidi Warren. Ms. Warren, 48, has been a full-time caregiver for more than eight years to her mother, with whom she lives in Greenville, Pennsylvania. Her mother, 76, suffered complications from spinal surgery in 2015 and developed chronic pneumonia, which has landed her in hospital more than 30 times.

Her mother has been doing better lately. But when Mrs. Warren was in her early 40s, her mother’s needs were unpredictable. “I didn’t really have a social life,” she said. She made plans to see a friend in the evening, but returned home to find her mother having trouble breathing.

“No two days are the same,” Ms Warren said. “There are times when it says, okay, I was going to do this today, but now we’re in the ER.”

The pair are best friends, “so it’s a labor of love,” she added. But many healthcare providers do not share that bond.

“Not everyone loves the person they care for,” said Dr. Lindauer.

Making an unknown sacrifice

John Poole, 39, became a carer in 2014 when both his parents suffered strokes within a month of each other. One of his main sources of frustration was the feeling that the health care system did not always take the work he did as a caregiver seriously – even though he took on some of the tasks that an experienced nurse might perform, such as administering medications and managing tube feeding. .

“The first year was very chaotic in the sense that I was learning as I went,” says Mr. Poole, who lives in Sicklerville, N.J., and had to quit his job in state government because of the demands of healthcare delivery.

He did not qualify for state Medicaid programs that would allow him to get paid for his healthcare work. And while he had help from family with some of the practical, day-to-day responsibilities, he sometimes felt as if well-meaning outsiders were offering solutions without understanding the complexities of healthcare delivery in the United States.

“The frustration of a lot of people – I know mine – was that you’re doing really valuable work that really isn’t being recognized by the outside world,” Mr Poole said.

Finding support through connection

Long-term stress among caregivers has been linked to health problems such as diabetes, arthritis and heart disease. That’s why Dr. advises. Applebaum caregivers to address the physical effects of anger, either through breathing exercises, a hot shower, or running—whatever helps. Sometimes, she said, caregivers need a private place where they can just yell.

Every person interviewed for this story also mentioned the power of peer support.

Jennifer Levin, 42, started a Facebook support group for millennial caregivers seven years ago after caring for her father. He had progressive supranuclear palsy, a degenerative condition similar to Parkinson’s disease.

“You have the basis of a common experience, and so you don’t have to explain where you come from with this anger,” Ms. Levin said. “I think people often worry when they say it to someone who doesn’t fully understand it, that it will overshadow the totality of their experience.”

Still, she said, there is a limit to how comfortable some people feel with sharing, even in a closed forum of peers. “Many caregivers do not dare to express their anger because they feel guilty.”

Ms Brenoff’s husband of 15 years died in 2017, after 18 months of ‘misery’. Before he died, she found solace in another Facebook group for caregivers, observing Throat Punch Thursdays. “That was the only night you could sign up and say you wanted to yell at someone,” she said. She has since remarried and has written a book about her experiences: “Caregivers are crazy as hell! Screams from the wife of the very sick man in room 5029.”

While most people have responded positively to her speaking and writing so openly about her anger, it hasn’t always been easy.

“It’s a great shame if you dare to say to someone: ‘No, this doesn’t actually pay off.’ This is not what I signed up for,” she said.