the Giver Young caregivers cope with protecting their parents.
By Jessaca Massey, Jayplay writer
I heard the shrill whine pierce the air a second before she yelled my name, "Jesssacccaa..." "Damn battery," I thought to myself, pulling my thoughts from my homework and trudging over to where a 2-foot tall gray box stood like a statue in the living room. I pressed a switch and immediately the box rattled to life with a high-pitched beep before settling to a loud drone. I grabbed the clear-plastic tubing that was lying on top and pulled the cord over to the couch where my mother had been napping. While she took the cord from me, I grabbed a similar, but much shorter cord from her hand. Beside me, I turned a black knob on a beige box that my family has affectionately named "Fred." The shrill whine immediately stopped. These drab-colored boxes are lifesavers. The gray box, groaning, hissing and pumping, is an oxygen concentrator, the other, a portable liquid oxygen tank. After I placed the portable next to two liquid oxygen tanks that resemble oversized kegs, I returned to my mother, who had already wrapped the cord around her face and was breathing in the oxygen hissing from the flexible tube.
I learned my freshman year of high school what the piercing whine meant: The battery was low and needed to be recharged. I also learned how to fill up Fred from the high-pressure liquid oxygen tanks. But i wasn't just learning about oxygen, I was learning to tend to the needs of my mother. She was suffering from Chronic Obstructive Pulmonary Disease (COPD) and emphysema. This disease makes it hard to breathe because the airways into the lungs are damaged.
When people think of caregivers, they typically picture people in their midlife with a career and a family, caring for their aging parents. That's not me. I'm 22, and I have helped care for my mother since I was in middle school. At 13, I was donning the role of a caregiver almost 30 years before the average American caregiver.
Indefinite numbers
There is little research about young caregivers in this country. However, it is easy to understand why there isn't more information or more services devoted to this group. In her study, Early Caregiving and Adult Depression: Good News for Young Caregivers, Kim Shifren writes that the average age for caregivers is 43 to 46 years. Shifren is an associate professor of psychology at Towson University in Towson, Maryland. But young caregivers are not a phenomenon. Shifren writes in her study that in the United Kingdom, 15,000 to 19,000 people younger than 18 are primary caregivers for their parents or grandparents. Shifren is studying young caregivers in the United States, in part because she was also a young caregiver.
Frances Gorman was just 24 when she started caring for her mother. In 2002, her mother's breast cancer had returned after a seven-year remission. At first, Gorman
just helped by taking her mother to appointments and visiting her at her home, but as her mother's condition worsened, she would stay with her at the hospital or at her mother's home. "I tried not to miss very much school, but I didn't try as hard on some of my work as I normally would have because, in relation to everything else going on, the homework assignments didn't seem as significant," Gorman says. Her mother became frustrated when she learned her daughter was letting her own work go to be with her. The most difficult part of caregiving was understanding that her job was what was most important at that time, Gorman says.
Whether you're 18 or 46, caregiving can be a difficult journey of bathing, feeding, managing finances, making appointments, getting and giving medicine — and the list goes on. Donna Schempp, program director for Family Caregiving Alliance, says all caregiving situations are role reversals, but this role reversal is more challenging for young caregivers because they have not had a chance to mature into the role of watching over someone. "It's an age when you're slowly taking on more responsibility, but you still need a mommy," Schempp says. Caregiving is also more difficult at a young age because young caregivers are more susceptible to resentment. They can feel like they are not doing enough, or shouldn't be doing things for themselves. Schempp says that young caregivers miss out on developmental milestones to adulthood, such as learning to cook, clean, pay bills or balance a checkbook register. Instead, these caregivers must immediately pick up where their parent or parents left off.
In my experience as a caregiver, I have had to take my mom to appointments, pick up her medicine from the drug store, fill oxygen tanks and buy her groceries. But I have also done more humbling tasks, such as bathing her or pushing her in a wheel chair when it was too far for her to walk.
In the absence of parental guidance, Schempp suggests young caregivers
reach out to others for support. "Find other people that would be your 'adoptive parent,'" Schempp says. For example, find a family friend, neighbor or clergy you can rely on for emotional support and guidance. Besides confiding in another person, Schempp says that caregivers need to seek counseling because they can easily become depressed. Counselors can help caregivers cope with
the role that has been pushed upon them. Caregivers are also at a high risk for suicide because of the combination of depression and anger. Younger caregivers also can feel more alone because they do not know how to seek help.
When author Claire Berman couldn't focus on anything else after her mother's death, she decided to write about her experience as a caregiver. In her book, Caring for Yourself While Caring for Your Aging Parents: How to Help, How to Survive,