“When people ask me to go back to those first days and recall what would have made them easier and more bearable, my answer would be simple: a loved one, preferably a mother, who cared about me and my child,” says JDRF volunteer Moira McCarthy Stanford, whose daughter was diagnosed with type 1 diabetes at the age of 6. “My husband and I basically had to do it on our own. I cannot tell you the power of having someone who really cares.”
It’s often been said that it’s not just a child who gets diabetes. Diabetes is a “whole family” diagnosis, and grandparents can be an extremely important part of the mix. Whether they live nearby or some distance away, grandparents must deal with the same emotions and adjustments as the rest of the family, and then determine how they can best support their loved ones. That support can take many directions, from stepping in to giving their children some well-deserved “time off,” to offering emotional support and understanding, to volunteering their time and energy to the fight for a cure. JDRF’s Online Diabetes Support Team, made up of volunteers from around the country, includes several grandparents of children with diabetes, and they all speak passionately about both the challenges and rewards of becoming integral members of the family team.
Sharon Koets, whose first granddaughter, Mazzy, was diagnosed at 20 months, remembers being shocked and overwhelmed in the beginning. But she and her husband felt they had no choice but to become experts in diabetes care. “We so wanted to do all the things we had always dreamed of doing with our grandchildren, yet we were fearful of taking on the responsibilities, and even wondered whether ‘quality grandparent time’ was possible at all,” she says. “We decided right at the beginning that we had to learn as much about diabetes as we could. We had no choice if we wanted be part of Mazzy’s life.” The couple also wanted to give Mazzy’s parents as much relief as possible. “They’re the primary caregivers, but a well deserved ‘time off’ is invaluable, because we all know that diabetes doesn’t take a day off,” she says.
Similarly, Phyllis Steingard recalls that when she learned 15 years ago that her 6-year-old granddaughter, Britni, had type 1 diabetes, she plunged into depression. “My days were filled with worry,” she recalls. Searching for a diabetes support group, she placed an ad in her local paper: “Anyone interested in fighting diabetes, come to our house for a meeting.” Fifty people showed up, and before long she was able to offer support herself–both in giving her children a break from their daily routine and lending them a compassionate, knowledgeable ear.
Barbara Altman was already all-too-experienced in dealing with type 1 diabetes: Her father, her husband, and one of her three sons all have the disease. But when each of her other two sons fathered children with diabetes (a granddaughter, Amy, diagnosed at age 6 and a grandson, Andy, at age 13), she jumped back into the arena. She began by reading “everything around” and sitting through educational sessions along with her children and grandchildren. “There were so many changes since I was a diabetes caregiver, that I was eager and anxious to have an update,” she says. Nevertheless, when she saw that her children had quickly developed into management experts, Mrs. Altman decided to learn their techniques rather than draw on her own experience. “They became the current experts, so it was important that I learn their routines,” she says. Soon, the Altmans were babysitting regularly, seamlessly assuming the daily routine. Doing things her children’s way was the best strategy, she says, but she admits to regularly bombarding them with e-mails containing any new information she picks up. “I’m sure they groan every time they receive one, but they’re good natured about it,” she laughs.
Mrs. Koets agrees that respecting the parents’ routines is important, but feels that education is the key. Because she doesn’t live with her granddaughter, it took her a while to get up to speed on Mazzy’s care. “After all,” she says, “this is my precious granddaughter, and nothing was going to go wrong on my watch!” She asked her daughter to “think out loud” and explain everything she was doing with diabetes care. She learned carb counting, testing, giving shots, and, later on, everything about pumping. “I even practiced giving myself shots in my stomach, and I tested my own blood sugar,” she says. The first time she gave Mazzy an injection was difficult, “but I could hear my daughter’s words, ‘You are saving her life.’” She says that cell phones have been essential to call Mazzy’s mom and dad just to make sure she’s doing things right. Putting things in writing also helps.
Likewise, Mrs. Steingard stresses her supportive role. “I’m there not to second guess my children’s decisions, but to listen to them, be supportive, and give them confidence and strength,” she says. She admits it can be hard for a grandparent not to be the one in control, but “we have to trust the judgment of our children and support their decisions.”
Mrs. Altman says her efforts have paid off to the fullest and that she has developed a special bond with her daughters-in-law. “It was worth the effort to get everyone comfortable with the fact that I’m on their team and supportive of them, and not an interfering mother-in-law,” she says. Like all the other grandparents interviewed for this article, Mrs. Altman has become an activist for the cure. When she moved to San Diego, she helped start a grandparent’s club through her local JDRF chapter, and she has long been involved in promoting research that is leading to a cure.
Mrs. Steingard expresses optimism for the future. “I had many tearful nights at the outset, but I’ve also had many wonderful days and nights watching my granddaughter develop into a mature, accomplished, capable young woman,” she says. Mrs. Steingard says that becoming a JDRF volunteer “makes me feel I am helping her to achieve a better future.” Mrs. Koets agrees. “Most of us would do anything for our children and grandchildren,” she says, “and there’s no better reward than the smile on my granddaughter’s face.”