That’s the situation Brenda Kong has had to face since her brother Jonathan was diagnosed with Hodgkin’s lymphoma, a type of cancer, a year ago. Brenda, 39, has been living with psoriasis and psoriatic arthritis since childhood. When her brother, who was 23 years old at the time, told his family that he had cancer and that he needed to go to the hospital the next day, Brenda suddenly found herself in the role of caregiver. “When we found out, I did not plan on being his caretaker. It just happened to be that way,” Brenda says. “When he started chemo, I took him in as an outpatient. I just stepped into that role. I became the liaison with all his oncologists.” Brenda also handles her brother’s insurance issues and arranges medical appointments for her parents, with whom she and Jonathan live in Oakland, California. “I’m really the administrator for the family,” she says. In many ways, it made sense for Brenda to take on the role, because she has been dealing with doctors and treatments for herself since she was 12. Still, caring for her brother was no small feat.
Juggling a Loved One’s Treatment and Your Personal Health
Jonathan’s cancer was caught at stage 2, and doctors estimated his chances of survival at 92 percent. But a grueling chemotherapy regimen left him extremely weak and nauseous. “Seeing him go through the pain was punishing,” Brenda says. “I experienced some big psoriatic flares because of all the stress.” During one cycle of chemo, Jonathan would be getting three days of chemo the first week, then one round the second week, followed by two weeks off. Brenda said it was essential for her to keep him on schedule because time was critical. If he missed a round, he would have to start the 30-day cycle again. That happened twice, but she did her best to keep him on track. “One of my biggest challenges was trying to get him up out of bed when he had just had chemo the day before,” she says. “He couldn’t move. He couldn’t function. I had to rally him and get him ready to go.” At night, Brenda would sleep just two or three hours, listening to her brother’s dry heaves from the sickness and his treatment. During the day, she would prepare his meals and run errands for him. One morning when Jonathan was struggling to get ready and they were running late to a doctor’s appointment, he lashed out at his sister and she started to cry. “I kept trying to remember that this is not him right now,” says Brenda. “He is in a lot of pain. He is angry and I would be angry too, because you don’t really know where your life is going when you have cancer.”
Caregiving Takes Its Toll on the Caregivers
Caring for someone with a serious health condition is emotionally and physically demanding, and it can pose health risks to the caregiver. A study published in the American Journal of Nursing found that caregiving “creates physical and psychological strain over extended periods of time.” That is especially the case for someone like Brenda, who is managing her own health issues. For the past three years, Brenda has been successfully treated with biologic medication, and the psoriasis does not affect her skin as much. But she is still prone to joint flares. She has full-body arthritis, but in particular, she has had trouble with her right wrist, right shoulder, and knees. Her rheumatologist will prescribe steroids as needed to help ease the pain. “Some days though, I have had to fight through the pain to get my brother to appointments because he depended on me,” says Brenda. But sometimes, the pain can be too much. “All the pain would culminate in me,” she says. “Some days I would stay in bed all day.”
Making ‘Me Time’ to Care for the Caregiver
It took Brenda some time to realize that if she didn’t take care of her own health needs, she couldn’t help care for anyone else. That helped her put things in perspective. “Because of how sick I’ve been in the past, I understand how important it is and how to balance things,” she says. She began using the time during her brother’s chemo sessions to take short breaks, even if it was to shop or run errands. “I needed to get away, and that would help a little,” she says. Brenda now knows her limitations. When her “cup is empty,” she has to take a break. She tries to take a little time each day for mindful breathing to calm down and clear her head. “I think some people are better at caregiving because they take time for themselves,” she says.
Knowing When to Ask for Help and Get Support
She has also learned to seek help from others when she needs it. When the pain from her arthritis became too great, Brenda turned to her sister. “I had to stop,” she says. “My sister takes him to some appointments here and there.” Brenda says that she’s lucky to have a supportive boyfriend. “When my brother started radiation and he began feeling better, my boyfriend took me away to Disneyland for the weekend and it was such a lovely break,” she says. Support groups have been a source of strength and encouragement. Brenda found it helpful to talk to other cancer caregivers, but she also developed a network of psoriasis friends. “I have a huge, encompassing psoriasis group online, and a lot of them are unfortunately dealing with cancer in their families,” says Brenda, who encourages others to follow her on Instagram. “I leaned on them a lot to get me through it emotionally, and they gave me a lot of tips as well.” After Jonathan’s last round of chemo and radiation came the wait to get the results. Brenda and her family remained hopeful while they enjoyed doing things together like taking a trip to the zoo. Then they got the news: “Jonathan is officially cancer-free,” Brenda says. “I love my little brother, and when you love someone, you will do anything to help them get better.”
