Second Chance: When Grandparents Become the Caregivers

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.

“The emotional worry and concern can cause caregivers to have health problems related to lack of sleep, lack of proper nutrition and a lack of meeting one’s own needs for exercise or rest,” Jones explains. “Caregivers are sometimes in worse physical and emotional shape at the time than the person they are caring for because they neglect their own needs.”

There’s also the financial burden, which can be considerable, particularly if the family has no insurance, high premiums or high co-pays. But even good insurance likely won’t cover ancillary expenses, such as travel, food and lodging, which can quickly mount up during treatment. Moreover, it’s not uncommon for caregivers to reduce their work hours or quit their job to care for a sick grandchild.

“There are numerous resources that help families of children with cancer, so I would encourage them to make contact with the social worker on their team,” Jones says. “Sometimes, there are also financial counselors at the hospital who can help identify financial resources and others who can help with vouchers for food and parking.”

In addition to the emotional stress that comes with caring for a child with cancer, caregiving grandparents may also experience a dramatic impact on their social life. “For some, social interactions are stress reducers,” says JoAnne Youngblut, a registered nurse and professor in the College of Nursing and Health Sciences at Florida International University in Miami who is conducting research with grandparents and parents after a child’s death. “But others find it stressful and prefer to temporarily limit time with friends until they get through the crisis.”

Indeed, it’s not uncommon for caregivers to change friends during or after a health crisis, Youngblut says. They may temporarily suspend contact with certain acquaintances in favor of others who have gone through a similar situation and may be more supportive.

“We know that social support and social networks are vitally important for emotional and physical health,” Marsland says. “To abandon support completely during a period when your need for support is greatest is a real concern because it has been associated with higher and more prolonged levels of distress.”

The experts agree that it’s important for grandparent caregivers to acknowledge the challenges in their life and work to alleviate them. This means eating properly, exercising regularly, sleeping well, communicating effectively and carving out time for personal hobbies and interests.

Equally important is reaching out for help when needed and accepting it when it is offered. This can be difficult for some people, especially those who feel the caregiving burden must be exclusively theirs to bear. “There are also people who view asking for help as a personal failing,” Marsland says. “I always try to reframe that by explaining that they’re actually offering others a gift by giving them the chance to help.”

Jones recommends that caregivers make a list of their needs—someone to do grocery shopping, someone to stay with the sick child while the caregiver runs errands, someone to do yard work—and make assignments when friends offer to help. “You have to tell them,” Jones emphasizes.

“Be very specific and concrete,” Jones adds. “They want to help but do not always know how best to be supportive.”