When Kids Are Caregivers

As if caregiving does not have enough twists, turns and demands already without having to face this stark reality of kids as caregivers. I have met so many young people who find themselves at the epicenter of a family as caregiver. Whether the role is giving direct care, such as administering shots or medications, or translating to a health care professional for a parent or grandparent who does not speak English, the responsibilities are big and sometimes quite burdensome.

Michael whispered to me one day in the incontinence section of our store. “I hate my life,” he said, looking over his shoulder to be sure his father was not in listening range. “Not only do I have to go everywhere with him because he needs so much help, but I have to figure out what kinds of things to buy him, too. “ He points to the shelves of adult briefs and pads, odor eliminating sprays and creams for skin care. “The doctors don’t help much,” he laments.

A situation like this one is layered with issues. First of all, Michael is only about twelve, the age of my oldest grandchild. If he has to go ‘everywhere” with his dad, when does he go to school. This interchange was on a Tuesday morning around 10:30 a.m. Where is the rest of the family, I wonder? In cases of divorce, for example, older children are sometimes split up to care for each parent. Or, if it is an intact family, the other parent works several jobs to make ends meet, leaving the children to care for the home and the ill parent.

Do the doctors and other health care professionals know that Michael is such a primary source of care for this adult? Many families keep such realities secret, fearing the intervention of Child Protective Services or other agencies that may take the children away. Kids are fiercely loyal in most cases, not even talking with their friends about the extent of their responsibilities.

My heart broke to hear Michael say he hated his life. He was too nervous to say more. So, we moved on to the task of finding the right products to keep his dad dry. I saw him a couple more times, but he was shy and hurried. Maybe he had said too much that one Tuesday morning and regretted it.

Another day I spoke at length with a 14-year old who was giving her mother insulin shots. “Mom taught me how to do it because her hands shake too much,” she said matter-of-factly. This young girl did the meal planning using the guidelines given by the dietician, went grocery shopping, cooked the meals, examined the mother’s extremities faithfully for signs of gangrene as the diabetes was quite advanced, and fretted endlessly over what would happen to her if her mother died. “We are alone here. There are relatives back East, but we don’t see them much.” I helped her find an affordable digital blood pressure monitor because she had just learned from the last doctor’s appointment that “mom has real bad blood pressure.”

A recent New York Times article highlighting this problem, focused on one program in Florida, The Caregiving Youth Project. “We can’t change the situation for a lot of kids, but we can help them through it,” says Karen Harwood, the project’s coordinator.

A 2005 survey found that 1.4 million children are caregivers, or three percent of the American population. The numbers are likely higher. If you know of a child who is also a caregiver, try first to talk with that child to be sure s/he or doing alright. Some kids do not want help and feel fine about the roles they play. Interfering can create more havoc. Contact the American Association of Caregiving Youth  for more information and ideas if you are worried or concerned about a child you know.

Resilience is a hallmark of youth. While growing up these days offers most kids plenty of opportunities to test that resilience, the challenges strain and push against the very real need for kids to simply be kids when they are caregivers instead.
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Kathryn Arbour writes and speaks on numerous topics, including caregiving, aging, disabilities and mobility products. Find more of her articles on www.Examiner.com.