Ann Brenov wasn’t worried when her dogs returned from a walk without her husband in 2015. Her husband often let the dogs off-leash and let them run down the steep driveway to her home in the Los Angeles Valley. “But after 20 or 30 minutes, we said, ‘Okay, where’s dad?'” said Brenov, 73, who has two children who were teenagers at the time. .
They found him lying at the bottom of the driveway. He was walking down the street and collapsed and crawled home. Brenov’s husband was soon diagnosed with acute kidney failure and required 24-hour care.
Three times a week, she drove an hour to his dialysis appointments or arranged for someone to drive him. She cooked him separate meals so he could follow a special diet and had daily confrontations with his health insurance company. She learned that when her husband’s condition worsened, applying a little Vicks VapoRub under her nose helped mask certain odors.
“One day you wake up and realize you’re no longer a partner or a wife,” Brenov says. “You’re a full-time medical case manager.” She stopped seeing her friends and her weight increased by 20 pounds. Her blood pressure rose.
And she got really angry.
Approximately 53 million Americans They are carers for family members or friends with health problems or disabilities, and almost a third spend more than 20 hours a week in the role. The Centers for Disease Control and Prevention urges: Caregivers are the “backbone” of long-term home care in the US, warns that caregivers face many risks. Anxiety and depression, chronic health conditions, and financial strain, just to name a few. But experts said many caregivers feel unable to speak up about their frustrations and anger.
“The stress is tremendous and constant,” Brenov said. “I’m pissed.”
“There’s this myth of the loving caregiver,” says Alison Lindauer, associate professor of neurology at Oregon Health & Science University School of Medicine. But she and other experts say anger and frustration are inevitable for caregivers, and it’s important to normalize those feelings, she said.
“There’s a lot of prejudice,” Dr. Lindauer says.
loss of control
Alison Applebaum, director of the Caregiver Clinic at Memorial Sloan Kettering Cancer Center and author of the forthcoming book “Stand by Me,” says she has worked with more than 4,000 people over the years. He said he has yet to meet a caregiver he hasn’t worked with before. She expressed her anger in some way.
Often, just beneath that anger is a “deep well of sadness,” Dr. Applebaum says. Many caregivers feel helpless and take on the role out of necessity or obligation, she says. They have little control over what happens to the people they care for or themselves.
“Many caregivers are unable to plan for the next day or week, let alone the next month or year,” she says. “And that’s infuriating.”
That’s a source of frustration for Heidi Warren. Warren, 48, has been a full-time caregiver for his girlfriend’s mother, who they live with in Greenville, Pennsylvania, for more than eight years. Her mother, 76, suffered complications from spinal surgery in 2015 and developed chronic pneumonia. She sent her to the hospital over 30 times.
Recently, her mother has been feeling better. But when Warren was in her early 40s, her mother’s needs were unpredictable. “I basically had no social life,” she said. She made plans to meet her friend in the evening, but when she returned home her mother was having trouble breathing.
“No two days are the same,” Warren said. “Sometimes it’s like, I was going to do this today and now I’m in the ER.”
She added that the two are best friends, “so it’s a labor of love.” But many caregivers don’t share that bond.
“Not everyone loves their significant other,” Dr. Lindauer says.
make unrecognized sacrifices
John Poole, 39, became a carer in 2014 when his parents suffered strokes within a month of each other. One of the main sources of his frustration is that the health care system does not allow caregivers to take on some of the tasks that a skilled nurse might perform, such as administering medications and tube feedings. There was a feeling that his work as a director was not always taken seriously. .
“The first year or so was very confusing in the sense that I was learning as I went,” said Poole, who lives in Sicklerville, New Jersey. Poole had to quit her job with the state government because of her caregiving needs.
He did not qualify for the state’s Medicaid program, which allows him to receive compensation for his care work. And while his family was supportive of some of the practical day-to-day responsibilities, it’s as if a well-intentioned outsider proposed solutions without understanding the complexities of caregiving in the United States. There were times when I felt like I was
“The frustration that a lot of people have, and I know it, is that you’re doing very valuable work and it’s not really recognized in the outside world. ,” Poole said.
Find support through connections
Long-term caregiver stress has been linked to health problems such as: diabetes, arthritis, heart disease. With this in mind, Dr. Applebaum advises caregivers to do whatever helps to deal with the physical effects of anger, such as breathing exercises, hot showers, and going for a run. Sometimes, she said, caregivers just need a private place to scream.
Everyone interviewed for this article 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 disease similar to Parkinson’s disease.
“You don’t have to explain where this anger comes from because you have a baseline of common experience,” Levin says. “I think people often worry that expressing it to someone who doesn’t fully understand it will overshadow their entire experience.”
Still, even in a closed forum among peers, there are limits to how comfortable some people are with sharing, she says. “Many caregivers are afraid to express their anger because they feel guilty.”
Brenov’s husband of 15 years passed away in 2017 after 18 “harrowing” months. Before he died, she found her solace in another of her Facebook groups for caregivers, Watch Her Throat Punch Thursday. “That was the night I could sign on and say I want to give someone a shout-out,” she said. She later remarried and wrote about her experiences in books such as: The wife of the seriously ill person in room 5029 is abusive. ”
While most people have responded positively to her speaking and writing about anger so openly, it hasn’t always been easy.
“It’s so embarrassing to dare to say to someone, ‘No, this isn’t actually rewarding.’ This is not what I signed up for,” she said.
audio creator kate winslet.