As most of us are aware, a diabetes diagnosis is difficult for everyone, including loved ones of the PWD. (We like to call them type 3s!)
That's why we were excited to learn about Jay Rosenfeld from Houston, TX, who's forming a virtual support group for a very specific group of type 3s -- grandparents. It can be pretty scary for these folks to care for grandchildren dependent on insulin -- always afraid something might go terribly wrong. Jay's hoping to grow the group to include grandparents of type 1 diabetics all over the country so that members can easily trade tips, tricks and advice.
Our new intern Amanda took some to speak with Jay about his efforts, and what it's like to be a grandparent of a young PWD:
Special to the 'Mine by Amanda Cedrone
When Jay Rosenfeld's granddaughter Parker was diagnosed with type 1 diabetes in June 2011, he wasn't surprised. Parker had stopped gaining weight, and was constantly hungry, tired or thirsty — classic symptoms of diabetes. But that didn't make him any better equipped to handle it.
"We were prepared for her being diagnosed, but we weren't ready for it," Jay said.
Jay and his wife, Babs, immediately made plans to travel from their home in Houston to be with Parker and her parents at a hospital in Austin. A close family, they wanted to learn everything that Parker and her parents were learning — how to test Parker's blood sugar, how to give an injection, how to deal with lows and highs, how to count carbohydrates — as many in the DOC know, the list seems never-ending.
They had another reason for being there too — emotional support. Jay and his wife were worried about how Parker's parents were feeling... Guilty? Overwhelmed? Sad? They were also concerned about what a diabetes diagnosis meant for Parker — what would her life be like from now on? Would she fit in? How could they help?
We've talked about the emotions and trials and tribulations that parents of newly diagnosed children experience, but Jay reminds us that as a grandparent -- and caregiver -- of a PWD, it's not easy. While Jay and his wife have continued to act as the emotional support for their children and grandchildren over the last two years, they've also struggled with their own emotions.
"However we were feeling in dealing with it had to take a back seat," Jay said. "We couldn't overburden our daughter and son-in-law."
Last spring, Jay and his wife took some steps toward a solution. Figuring others had to be going through something similar, Jay started talking to the folks at JDRF offices in both Houston and Austin about creating some sort of support group for grandparents of type 1 PWDs.
Over the last year, Jay continued to push the idea. In March, JDRF scheduled him to hold a break-out session at the Type1Now Conference in Austin for any grandparents who were in attendance. That day, 22 people showed up for the session, and Jay has since started an email thread for those participants to keep in touch.
However, Jay wants to reach more than 22 people. Hoping that eliminating the geographic barriers will create more interest and participation, he started a group called "Grandparents of T1D Kids" on TuDiabetes.org.
Jay has spent the last month reaching out to friends, family, local businesses, and various diabetes groups to get the word out about the virtual support system he's created for grandparents. Ideally, he wants the site to grow to be a place where members can ask questions, share their feelings and support one another.
While Jay is careful to remind us that the site is in no way there to substitute for the advice of a medical professional, he feels that he's become very knowledgeable on how to be a grandparent of a PWD — advice he wants to share.
"I feel like an expert and I know that I'm not, but I didn't even know how to spell diabetes two years ago," he says.
The site is free of charge, and interested grandparents need only register with a username and password to participate in discussion.
JDRF has been supportive of the Rosenfelds' efforts. The JDRF Austin and Houston and Orange County, CA, branches agreed to include the link to the online support group in the Bags of Hope given to newly diagnosed type 1s, and are in the process of doing so.
The special role that grandparents play in their diabetic grandchildren's life has not gone unnoticed until now, of course. The Children with Diabetes Friends for Life Conference offers two days of sessions for grandparents to learn more about diabetes and to discuss their concerns.
Bruce and Rachele Baccaro, of Newburgh, NY, are the lead grandparents at that conference. They became involved around five years ago after their grandson Kyle, then 7, was diagnosed.
"Like any grandparents, we were terrified," Bruce said. "What helped us tremendously was going to the Friends for Life Conference and finding out there were other people who were just as frightened and lacking in knowledge, and that we were all in this together."
Both Bruce and Rachele encourage grandparents of PWDs to get involved in a way that suits their individual family — even if its only learning more about diabetes.
"Knowledge is power," Rachele reminds us.
Diana Naranjo is a PhD, clinical psychologist, and researcher at the University of California San Francisco's Madison Center for Pediatric Diabetes. She's also a member of the Children with Diabetes Friends for Life grandparents faculty. Naranjo is largely responsible for providing emotional support to the grandparents at the conference. No small task.
"They're often worried or concerned they're not going to know what to do," she said.
Even if grandparents aren't playing an active role in helping to care for their type 1 grandchild — whether due to distance, overprotective parents, or other reasons — Naranjo encourages them to learn everything they can about diabetes by reading online, taking a course, or by attending a few of their grandchild's doctor appointments. For the parents of the newly diagnosed who want their child's grandparents to be more involved, Naranjo encourages them to reach out and be straightforward about what they need.
That being said, she reminds us that not every grandparent is going to feel comfortable with finger pricks, injections and carbohydrate counting right away. In fact, they may never. And that's all right too.
"At the end of the day, if they are really struggling with something, you need to reassess how the grandparents can be helpful in another way and still be part of your life," Diana says.
Do you know any grandparents of PWDs who have expertise to share, or may be seeking advice? Got any advice yourself? Please leave a comment for Jay and his group below.