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Second Chance: When Grandparents Become the Caregivers

BY DON VAUGHAN
PUBLISHED WEDNESDAY, SEPTEMBER 18, 2013
When Norma Jean Jackson’s 12-year-old grandson, Tavontate Little, complained of a protruding left eyeball, his doctors originally thought it might be a sinus problem. But an imaging scan revealed a tumor. After he received a diagnosis of mesenchymal chondrosarcoma in late March, Jackson, of Plaquemine, La., didn’t hesitate to step up as his caregiver. Because his mother worked full-time, it was easier for Jackson to assume most of her grandson’s caregiving needs during treatment, she says.

Jackson accompanied her grandson to his appointments at Our Lady of the Lake Regional Medical Center in Baton Rouge, where he received his initial diagnosis, then to St. Jude Children’s Research Hospital in Memphis, Tenn. There, Little received chemotherapy to shrink the tumor behind his eye. He then had surgery to remove the growth at Le Bonheur Children’s Hospital, also in Memphis. He returned to St. Jude in June for six weeks of radiation treatment with his grandmother again at his side.

Jackson says she has adapted well to her role as caregiver. Throughout her grandson’s chemotherapy treatments, Jackson had to clean and irrigate the central line in his chest daily. She also had to watch for mouth sores and constipation, and make sure he was eating right. The most challenging part, she notes, was watching him undergo various scans and biopsies. “That was hard,” she acknowledges. “But he wasn’t scared. He handled it better than I did.”

Jackson is one of a growing number of grandparents nationwide who have some degree of guardianship over their grandchildren, says Madelyn Gordon, executive director of Grandparents As Parents, a nonprofit organization based in Canoga Park, Calif.

“An estimated 2.7 million children, or 4 percent of all children in the United States, live in public or private kinship care,” Gordon says. “That’s an increase of almost 18 percent over the past decade, compared with a total child population increase of only 3 percent.”

Grandparents become custodial caregivers for their grandchildren for a variety of reasons, says Sylvie de Toledo, founder of Grandparents As Parents and a licensed clinical social worker. The most common are parental drug and alcohol abuse, parental incarceration, illness, military deployment and a lack of adequate child care or child abuse.

“Grandparents often take these kids in at a time in their lives when they had hoped to be doting grandparents, not parents all over again,” says de Toledo, who co-authored Grandparents As Parents: A Survival Guide for Raising a Second Family. “It impacts their lifestyle, their finances and their social life.”

Grandparent guardianship can also alter the family dynamic. For example, the grandchild’s parents may believe that the grandparent has “stolen” their child, resulting in resentment and strife between the parents and the caregiving grandparent. There may also be additional legal problems related to custody.

“It generally is not a harmonious beginning,” de Toledo says. “It’s important for a family to work on communication skills, so they can provide a united front for the child, who may feel torn. You want to have as good a relationship as possible with the parents and not bad-mouth them.”

It’s important for a family to work on communication skills, so they can provide a united front for the child, who may feel torn.

Family conflict can intensify when a grandchild develops cancer. For example, the level of disruption that accompanies childhood cancer can impact all family members, including healthy siblings who may exhibit emotional distress and behavioral difficulties as a result of loss of attention, unmet needs and the interruption of normalcy, says Anna Marsland, a registered nurse and associate professor in the Department of Psychology at the University of Pittsburgh. “Caregivers often find it difficult to balance the needs of the other children,” she adds.

“There are a number of providers in the hospital who can be helpful,” says Barbara Jones, an associate professor in the School of Social Work and co-director of the Institute for Grief, Loss and Family Survival at the University of Texas in Austin. “For example, they could meet with a social worker to talk about the issues and how best to put the child’s interests at the forefront. Family care conferences with the child’s medical team can also be very helpful.”

Guardianship can be stressful during the best of times. But when a grandchild also is being treated for cancer, the physical, emotional, financial and social burdens can become almost overwhelming.

“Anytime you take on a caregiving role specifically for a child with cancer, it does come with physical demands,” Jones says. Frequent travel for treatment can result in fatigue, which may be exacerbated by an exhausting home medication regimen. Compounding the problem is the chronic worry and anxiety that comes with caring for a sick child. It can be even more complicated if the grandparent has a medical issue.

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