🌺 Da Silent Fury of Caregivers: Handling Da Heavy Kuleana 🌺

⬇️ Pidgin | ⬇️ ⬇️ English

Eh, gang! You know, taking care of one sick ‘ohana member can mean you gotta put your own life on pause, and most times, you no get much recognition or help from outside. 🏥

Take Ann Brenoff, 73, from Los Angeles. Back in 2015, she neva worry when her dogs came back from one walk without her husband. But aftah like 20 or 30 minutes, she and her two teenage keiki wen start asking, “Eh, where’s Dad?”

They found him at da bottom of their steep driveway, collapsed. Turned out, he had acute kidney failure and needed somebody for look aftah him all da time. Tree times a week, Ann had for drive one hour to his dialysis appointments or find somebody else for take him. She had for cook special kine food for him and beef daily with their health insurance company. Her husband’s condition wen get worse, and Ann realized she no was just a wife and partner anymore; she became one full-time medical case manager. She stopped hanging out with her friends and gained 20 pounds. Even her blood pressure wen go up.

And, brah, she got really, really angry.

About 53 million Americans are taking care of a family member or friend who sick or disabled, and nearly a third spend 20 or more hours a week doing dis. Da Centers for Disease Control and Prevention says these caregivers are da “backbone” of long-term home care in da U.S. But they also face plenty risks, like anxiety, depression, health problems, and financial stress. Yet, plenty caregivers feel they cannot talk stink about their frustration and anger.

“The stress is massive and neva ends,” Ms. Brenoff said. “I was super mad.”

“There’s dis myth about da loving caregiver,” said Allison Lindauer, one neurology professor. But she and other experts say dat anger and frustration are normal parts of being a caregiver, and it’s important for acknowledge those feelings.

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

For many caregivers, like Heidi Warren, 48, from Greenville, Pa., da loss of control is one big source of frustration. She been taking care of her 76-year-old mom full-time for ova eight years. Her mom had complications from spine surgery and often ended up in da hospital. Heidi’s life had no predictability, and she barely had a social life. One day she plans for go out, but den she comes home and finds her mom in distress, and off they go to da E.R.

John Poole, 39, became a caregiver in 2014 when both his parents had strokes. He felt frustrated dat da healthcare system didn’t take his caregiving kuleana seriously, even though he was doing nurse-level work like giving medication and managing tube feedings. He had to quit his job and didn’t qualify for Medicaid programs that would pay him for his caregiving. And even with ‘ohana help, he felt like outsiders didn’t really get the complexities of caregiving in da U.S.

“A lot of people’s frustration — mine too — was dat you’re doing valuable work dat is really not recognized by society,” Mr. Poole said.

Finding support through connection is crucial. Long-term caregiver stress can lead to serious health issues like diabetes, arthritis, and heart disease. Dr. Applebaum suggests caregivers find ways to physically address their anger, whether it’s through breathing exercises, a hot shower, or a run. Sometimes, she said, caregivers need a private place where they can just yell.

Every person interviewed for this story mentioned da power of peer support as well.

Jennifer Levin, 42, started a Facebook support group for millennial caregivers seven years ago, after taking care of her father who had a condition similar to Parkinson’s disease.

“You have da baseline of a common experience, so you no need for explain where you’re coming from with dis anger,” Ms. Levin said. “A lot of times, people worry if they express it to somebody who doesn’t get it, that it will overshadow everything else they going through.”

Still, she said, get limits to how much some people feel comfortable sharing, even in a group of peers. “A lot of caregivers are scared for express their anger, cause they feel guilty.”

Ms. Brenoff’s husband died in 2017, after 18 months of “misery.” Before he passed, she found comfort in another Facebook group for caregivers, which had Throat Punch Thursdays. “That was the one night you could sign on and say you wanted to yell at somebody,” she said. She since remarry and write a book about her experience: “Caregivers Are Mad as Hell! Rants From the Wife of the Very Sick Man in Room 5029.”

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NOW IN ENGLISH

🌺 The Silent Struggle of Caregivers: Navigating the Unseen Challenges 🌺

Hey folks, here’s a story that’s all too common yet often goes unnoticed. Taking care of a sick family member often means pausing your own life, a journey filled with unseen sacrifices and little external support. 🏥

Ann Brenoff, a 73-year-old from Los Angeles, experienced this firsthand in 2015. Her life took a sharp turn when her husband collapsed while walking up their steep driveway. He was later diagnosed with acute kidney failure, requiring constant care. Ann’s days were consumed with hour-long drives to dialysis appointments, preparing special meals, and endless battles with their health insurance company. Her life transformed from that of a partner and wife to a full-time medical case manager. She stopped socializing, gained weight, and her blood pressure rose.

And, understandably, she found herself engulfed in anger.

This scenario is far from unique. Around 53 million Americans find themselves in a caregiver role for a family member or friend with health issues. The Centers for Disease Control and Prevention labels these caregivers as the “backbone” of long-term home care in the United States. Despite their critical role, caregivers often battle anxiety, depression, chronic health conditions, and financial strain. Yet, many feel unable to openly express their frustration and anger.

“The stress is overwhelming and relentless,” Ms. Brenoff shared. “I was filled with anger.”

This anger, as Allison Lindauer, an associate professor of neurology, explains, is a normal part of the caregiver experience. It’s essential to acknowledge and normalize these feelings, despite the stigma.

The root of the frustration for many caregivers, like Heidi Warren, 48, from Greenville, Pa., is the loss of control. For over eight years, she’s been caring for her mother, who has faced numerous health challenges. Heidi’s life became unpredictable, with her social life virtually non-existent. Each day brought new emergencies, disrupting any plans she might have had.

For John Poole, 39, who became a caregiver in 2014 after both his parents had strokes, a major source of frustration was feeling undervalued by the healthcare system. Despite performing tasks akin to a skilled nurse, he felt his efforts were not taken seriously. He had to leave his job and struggled with the fact that his valuable work was unrecognized by wider society.

Caregiver stress can lead to serious health issues. Dr. Applebaum advises caregivers to find ways to manage their physical reactions to stress, be it through exercise, relaxation techniques, or finding a private space to vent.

Peer support is also invaluable. Jennifer Levin, 42, who cared for her father with a degenerative condition, started a Facebook support group for millennial caregivers. This shared experience provides a space where caregivers don’t need to explain their feelings of anger or frustration. However, even in such supportive environments, many caregivers hesitate to fully express their anger due to guilt.

Ms. Brenoff’s husband passed away in 2017, after a long and difficult period. She found solace in a Facebook group for caregivers, where they had Throat Punch Thursdays – a time when members could freely express their frustrations. Her journey led her to write a book about her experiences: “Caregivers Are Mad as Hell! Rants From the Wife of the Very Sick Man in Room 5029.” 🌺📖👩‍⚕️