THE BLOG
11/15/2012 11:42 am ET | Updated Jan 15, 2013

The Surprising Face of a Caregiver

I openly share the struggle that I had caregiving for my ailing mother when I was just 18 years old. I have often discussed how difficult it was to relate to my peers, whom I believed would not understand my situation. At the time, I was unaware that an estimated 1.4 million American youth, 8-18 years old, are caregivers for a family member. (1)

In addition, I only recently learned that according to a large Palm Beach County study in Florida, more than half of middle and high school students have the dual role of young caregiver and student (2); that one-third of all students miss school or after school activities, do not complete homework, and/or are interrupted in their studies or work, due to caregiving activities (3); and that 22% of high school dropouts who leave school for personal reasons do so to care for family members (4).

The prototype of a caregiver is a middle-aged woman tending to her elderly mother. That image leaves a lot of caregivers under-recognized and therefore under-served, namely youth caregivers. As a result of the growing number of grandparents and single parents raising children, coupled with the nosedive in disposable income, an increasing number of American families depend on children for help. In fact, nearly one million of the youth who are caregivers today are tending to a parent or grandparent (5).

Connie Siskowski was one of these youth. As a child, she gradually took on the role of caregiving for her grandfather, following his retirement at age 84. By the time Siskowski was 13, she was sleeping in the living room, where she was closer to her grandfather and better able to administer his medications in the middle of the night. That year, she also was the one to find her grandfather dead.

Only through counseling as an adult did Siskowski recognize the consequences this experience had on her development, well into adulthood. "There were no bereavement options available to children at the time," she recalls. Determined to rectify the overall lack of support for caregiving youth, Siskowski founded the American Association of Caregiving Youth (AACY), an organization that raises awareness of and offers resources for this hidden population of caregivers.

"These students may struggle academically, feel torn about what they 'should' do, and feel under-valued or taken for granted," says Siskowski, now President of AACY. Additional issues common to youth caregivers, she notes, include a loss of childhood, lack of playtime, isolation from peers, and as a result of these various matters, high levels of stress and emotional difficulties.

I asked Siskowski her self-care guidance for youth caregivers. First and foremost, she advises, "It is important for youth caregivers to know they are not alone." Here are three more tips she offered for navigating the youth caregiver maze:

1. Speak Up
Let your teachers or school administrators know that you are caregiving for a family member. To educate your school faculty about the issues facing youth caregivers, direct them to AACY or download information from the organization's
website.

2. Take Care of Your Health
Caregiving comes with high levels of stress and can have an adverse impact on one's health, so be sure to eat proper nutrition, exercise regularly, and get physical check-ups with your doctor.

3. Get Help
Call 1-800-725-2512, the AACY toll free number, and ask for youth caregiving resources in your local area. A staff member will get back to you as soon as possible.

As one who knows first-hand the challenges of being a youth caregiver, I am grateful to Siskowski for launching this important organization and supporting our youth caregivers. I wish I had a resource like this back when I was 18 years old.

1. National Alliance for Caregiving (NAC) & United Hospital Fund, 2005.

2.Young caregivers: effect of family health situations on school performance.
Siskowski C.
J Sch Nurs. 2006 Jun;22(3):163-9.
PMID: 16704286 [PubMed - indexed for MEDLINE]

3. Young caregivers: effect of family health situations on school performance.
Siskowski C.
J Sch Nurs. 2006 Jun;22(3):163-9.
PMID: 16704286 [PubMed - indexed for MEDLINE]

4. Bill and Melinda Gates Foundation

5. The National Alliance for Caregiving indicates that 2/3 of the 1.4 million youth
caregivers are caring for an aging parent or grandparent.