Who is the Cancer Caregiver? The Unsung Hero
The flight touched down in DC. Jacqueline sat in row 78K. Tired, anxious, excited and already homesick. She stared through the plane’s window at the new landscape whizzing by in a blur. After earning her Ph.D. in biophysics and biochemistry, she landed a plum job inside a cancer research lab in the United States. At 30 years old, her stellar career as a biomedical scientist served as just one detail in a long list of talents.
She navigated two cultures. Born to an Arabic-speaking family, Jacqueline spent her teens in Australia, her adopted home. She was several oceans away from her war-torn native country. As with many immigrant families, Jacqueline surpassed her parents and older siblings in English. She lived with her aging parents in Sydney.
According to the Family Caregiver Alliance, “With the 65+ age group expected to double to 70 million people by 2030, family caregivers increasingly provide care for aging parents…most of whom have one or more chronic conditions and who wish to remain in their own homes and communities as they age.”
Naturally, Jacqueline became the translator for her beloved ‘Mama’ and ‘Baba.’
“I was responsible for my parents. I take care of them. Hospital appointments, filling out forms, doing the translations,” she said.
In 2016 Baba was diagnosed with Stage 3 Prostate Cancer. The cancer had grown for some time.
Jacqueline got the news over the phone. She’d spent a few months settling into the U.S. She said the diagnosis was somewhat of an ‘expected’ shock, since her father had been managing inflammation in the prostate area for a few years.
She quickly did some online research to read up on surgeons and prostate cancer. Her medical science background was a huge benefit, since she was able to understand the dense information within medical journals.
Jacqueline wasted no time and got on the phone. The 14 to 16 hour time difference between the U.S. and Australia had to be overlooked. She hopped on a three-way phone call.
“It’s me…dad and the family doctor,” she said of her remote caregiver situation.
Using the phone Jacqueline continued to attend Baba’s visits with the doctor. In the days ahead, she served as the intermediary between the family doctor and Baba.
Like many family caregivers, Jacqueline did not live with the patient.
“It’s a lot of stress over the long distance. This becomes so stressful to the caregiver, probably more than the patient himself,” said Jacqueline.
All her efforts focused on the decision for a treatment plan.
“It impacted my work. I had to get out of work and call. It affected my sleep. I had to wake up early hours of the morning and make calls. It affected my finance,” she explained.
Priorities of the Cancer Caregiver
Jacqueline could handle the medical jargon better than most. Her Ph.D. in science came in handy when reading journals.
“First thing I want to do is get the right steps and know the best options to treat my father,” she said.
But her caregiver duties had an even more difficult task. She needed to maintain a cool composure despite deep worries.
“The second thing going through my mind was…how to calm my father down in order to decrease his stress and anxiety.”
As the cancer patient, Baba became depressed. He faced a double layer of confusion because of the language barrier. He needed more time to comprehend his diagnosis.
“So my role was to calm him down,” Jacqueline said. “Decrease the effect of the news and just keep him positive.”
The cancer caregiver tried to paint a more upbeat picture.
”Prostate cancer is not as deadly as pancreatic cancer,” Jacqueline explained to Baba. “And prostate cancer grows slow. And we will operate the next day. And the recovery is better unlike other cancers.”
Under the grave situation, Jacqueline became a fortress against emotional turmoil. She needed to tone down the fear and sadness expressed by family members.
“Sometimes the stress of the family members is higher than the patient,” said Jacqueline.
“They don’t understand the situation and how it should be handled. So sometimes the family members cause the patient to be stressed, because they become overreactive.”
Jacqueline had to be strong during critical moments.
“My mom was crying all the time. That made my dad ask, ‘Oh my gosh, what is happening?’ [He got] even more confused.”
The cancer caregiver continued to allay everyone's fears.
“I would said, ‘It’s easy, it’s fine.’”
Caregiver serves as Patient Advocate
As the caregiver Jacqueline also advocated for Baba during doctor’s visits. During the patient’s vulnerable period, the caregiver exercised better judgement under pressure.
For example, the family had to find a different surgeon for Baba. Initially, the family doctor referred a surgeon who was too busy to take on more patients.
Jacqueline took charge of going ‘doctor shopping.’ The chosen surgeon took the time to talk with the caregiver over the phone with Mama, her brother, and Baba.
Two days after the diagnosis, the family agreed on the treatment plan: Remove the prostate gland and surrounding tissue.
The surgeon talked in-depth with Jacqueline. She asked questions based on her medical readings.
“I seek more explanations. ‘Why are you doing it? How are you doing it?’ At the same time, I try to translate all the positive things to my dad.”
Meanwhile, Baba suffered from high emotional distress, according to Jacqueline. Despite talking with the surgeon, the patient was too anxious to fully understand the next steps.
“He can’t judge what is really going on. That’s why the [family] caregiver role is dominant. You need to know what is best for your family member, on his behalf.”
Caregiver provides emotional support
Four days after the diagnosis, Baba underwent surgery, a prostatectomy. Jacqueline flew back to Sydney on the day of Baba’s operation. She went straight from the airport to the hospital.
“He was on the bed in a hospital gown, and I gave my dad a hug and a kiss. ‘How are you, Baba?’” she greeted him.
Jacqueline’s visit comforted her father.
“It’s not just the ‘caretaker’ [being] there. But it’s also family. He saw his daughter who was away for a couple of months. It also helped the rest of the family to feel secure.”
Caregiver monitors patient’s recovery
Jacqueline continued to serve as a calming presence, when Baba was released home to recover. He needed regular medication reminders and continuous supervision.
Jacqueline monitored Baba’s diet and routine habits. The initial two weeks in recovery were tough. According to Jacqueline, Baba fell into a ‘very bad depression’ due to complications stemming from surgery — incontinence.
“My dad was not able to sleep well or live well because of the incontinence issue. So my role was to keep reminding him that this is a temporary problem. He just did an operation. And there are so many ways to get it treated.”
Caregiver manages the patient’s mood
Despite the initial reassurance, Baba experienced a bout of deep pessimism.
“He was losing faith in life,” said Jacqueline.
Baba would express his frustration: If I have to return to being a child after being a good man, then I can’t live like this anymore.
“With this type of depressing statements, it made the whole family depressed for him, especially my mom,” Jacqueline explained.
So the caregiver worked to create an uplifting atmosphere. She told jokes and put on light-hearted movies. She also performed housework and kept company with her mom during trips to the supermarket.
Caregiver’s stress
Although family caregivers provide indispensable service, they are also prone to emotional stress. According to the Family Caregiver Alliance: “In addition to more complex care, conflicting demands of jobs and family, increasing economic pressure, and the physical and emotional demands of long-term caregiving can result in major health impacts on caregivers.”
Jacqueline neglected self-care during the trip to Sydney.
“I forgot myself.”
She remained fully devoted to caring for Baba and supporting her mom.
“I did not have jet lag because I was so busy. I wasn’t feeling tired. My mind was going crazy about my family and my dad.”
After two weeks Baba got better adjusted to his new normal. He was not feeling as defeated. Mainly because Jacqueline executed a strategy to minimize the negative.
“There was a possibility that the incontinence problem would persist. You can’t tell the patient this news. You have to wait for the patient to fully recover and be in a stable emotional state,” she said.
As the caregiver with legal consent from her Baba and family, Jacqueline would negotiate with the surgeon.
“I used to talk to the surgeon beforehand and let him know not to talk about the bad stuff [in front of] my family.”
The Remote Caregiver
After Baba stabilized in his recovery, Jacqueline flew back to DC.
She remained intensely worried about her family’s expectations for Baba. Will the cancer return?
“I knew the operation, how tough it is and what kind of care it requires. And how long it takes to recover. Sometimes one month, [or] two years, 10 years. But the family didn’t know. The patient isn’t always normal after the operation.”
Jacqueline continued to call Sydney two to three times a day.
“Make the patient happy. Keep him feeling he will recover very soon,” she said.
Two years after the operation, Baba’s follow-up tests indicated he remained cancer-free.
Today, Jacqueline keeps encouraging Baba through video chats in between her visit. She suggested he reach out to friends who also survived prostate cancer and complications after surgery. Staying socially engaged has increased Baba’s overall wellbeing. He maintains a moderate exercise routine and spends time in his garden.