Today, most young girls out of high school are working, maybe going to college, and filling their free time with things that young girls do. Like spending time with friends, shopping, and dating.
Brittany McElveen of Hartville, should be doing all of those things. But unlike other girls her age, Brittany doesn’t have time. She can’t work. Or go to school. Or date. And if she gets out of the house, it’s only for necessary things such as medicine.
Brittany is a caregiver. In fact, she is the primary caregiver for her 77-year-old grandmother, Dorothy Lemmons, a hospice patient.
Brittany’s mother was an alcoholic so she lived with her grandmother as a child. At 18, when her mother died after battling cirrhosis of the liver, she assumed the role of caregiver for her ailing grandmother.
“I never asked to take care of my grandmother”, she told me. “I am doing it because of the guilt I feel.”
Brittany explained that the source of her guilt comes from being absent when her mother needed her most.
“She raised me and I owe it to her”
So Brittany’s own young life is on hold.
She doesn’t regret having to care for her grandmother even though she is sacrificing so much because, she says, “If I don’t do it, who will?”
Brittany said her friends can’t really comprehend her role as caregiver.
“People tell me I don’t have experience to do this, but I see that my grandmother looks up to me and appreciates the things I do for her,” she said.
When pressed, Brittany admits not even she is sure how she does it, but, she seems to get through every single day.
Her typical day begins at 6 a.m. when her sister, who works, drops off her three children, ages 8, 5 and 4, at the house. After she fixes breakfast and settles them down she takes care of the pets then wakes her grandmother for her medicine.
“She cries a lot”, Brittany says of her grandmother, “and when she falls, I am there to pick her up.”
She is certain that her grandmother would not be happy in a facility, and, as she puts it, “she raised me and I owe it to her.” Brittany is determined to continue providing care in their home as long as her grandmother is alive.
“Here, she knows she is loved.”
A “hidden population”
Across the country, more and more children are caring for sick parents or grandparents. According to American Association for Caregiving Youth, the first and only U. S. organization that identifies and supports caregiving children, as many as 1.4 million U.S. children ages 8-18 are caring for disabled, ill or aging family members.
Christy Horn, LCSW, the director of a caregiving youth project for AACY said “these kids experience the same challenges as adult caregivers, yet they are not equipped to manage the resulting sadness and anxiety.”
In addition to their schoolwork, caregiving children find themselves dispensing medications, grocery shopping, cooking and talking to doctors.
Many often help the ailing family member with activities of daily living like bathing, dressing, and eating, leaving little time to socialize or study. Many miss – or quit – school.
Experts say that in the United States the issue of children as caregivers is often hidden.
“It is embarrassing for grownups to admit they’re so helpless that a child is caring for them,” said Kim Shifren, a psychology professor at Towson University, who studies child caregivers and was one herself.
Sometimes a lack of awareness prevents children from receiving the support they need from schools, social service agencies and health providers. Either the child isn’t comfortable discussing it or adults fail to recognize the extent of the family situation.
“Our society thinks of children as being taken care of; it doesn’t think of children as taking care of anybody,” said Carol Levine, director of families and health care at United Hospital Fund, a health services organization that studied child caregivers.
Things children shouldn’t have to do
Data prepared by the American Psychological Association in 2010 shows that many of these young caregivers are from low-income, single-parent households, compounding the stress of their demanding roles.
And, to make matters worse, their data also showed that children in many ethic-minority families who are the only English-speaking family members are serving as translators for the patient in the doctor’s office or hospital.
Currently under hospice care, a non-English speaking mother with a brain tumor wished desperately for someone other than her two young children to translate the details of the terminal diagnosis to her. The hospice care provider, recognizing the enormous anxiety it caused her, arranged for a volunteer fluent in Spanish to assist in translation, relieving the children of this heartbreaking responsibility.
“I feel brave and courageous”
When she finally gets time to herself, usually at bedtime, Brittany McElveen says she feels “good, bad and stressed” for everything she has done that day.
Like others, Brittany knows that her full-time job as a caregiver is keeping her from having her own life. She says she feels brave and courageous, however, and with maturity well beyond her years she continued, “I am taking care of someone’s life and that is not an easy thing to do.”
To learn more about the American Association for Caregiving Youth, visit their website at www.aacy.org. Also, please visit www.hospicecare.net for more information on End of Life Care.
Column presented by Cindy McLaughlin, Community Relations Liaison/Communications Team Member, Hospice Care of South Carolina, email@example.com.