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Children as Caregivers

"It’s my responsibility,” he told me. “We’re family.” His name is Joel and he is 11. His 13-year-old brother, Scott, feels the same way, explaining that it’s “just something you do, you take care of each other.” This is not an uncommon theme in children when they live with someone who has a physical disability or a chronic illness. Whether it’s a parent, step-parent, grandparent, sibling or non-relative, children also take on the role of caregivers, though this role is frequently less distinct than that played by the adults in the home. However, children are no less affected by the life changes that come with caring for someone with chronic illness or disability, and recognizing the effects that this situation has upon them is the key to helping young people cope with the stress and uncertainty that often accompanies it. This may be particularly challenging since much of the time the person needing care is a parent.

“Disability” and “illness” can take many forms, from a sudden injury which forces changes in mobility, such as a spinal cord injury or fracture of a limb, to more insidious medical illnesses like MS, rheumatoid arthritis, or cancer.

Alcoholism and drug abuse are also forms of illness which have their own unique reverberations in the household, and each has effects upon the child in different ways. The way each child reacts and copes with the medical situation is largely based upon their personality and prior life experience. According to one person interviewed who was a caregiver for her mother and siblings following her father’s death, “you get through it.” Now a Social Worker, she feels that “those who are not ‘strong enough’ may go on to marry early to get out of the situation, or find themselves in unhealthy relationships” where they are dominated by a stronger personality. She also stated that “it’s just what you do,” and this is a common comment made by those who found themselves in a caregiving role when they were young.

Caregiving takes many forms, from helping with younger siblings to performing household tasks normally completed by an adult, such as cooking or providing personal care to the disabled or ill person. Often, the receiver of the care is an adult, which places the young person in a precarious position of being a child, essentially performing parental functions for an adult. This can result in role conflicts within the child, and changes the dynamic in the parent-child relationship. In interviewing those who had entered into the role of caregiver at an early age, it was notable that none of them initially indicated feelings of resentment at their situation. Like Joel and Scott, it came as part and parcel of being a family, but there is a cost.

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