All of our lives are marked by milestones and passages. For families who are dealing with acute or chronic medical conditions, these transitions can be especially challenging. Whether it’s the onset of Alzheimer’s for a spouse or the changes of adolescence for a child with type 1 diabetes, patients and their families must come to terms with a new reality, which can be frightening and overwhelming.
The challenges may start when a parent first finds out that their child has diabetes, but they don’t stop there, says Rosi Vogel, whose sons Jonathan, 17, and Daniel, 14, both have type 1 diabetes. “As they grow, it’s kind of scary to let them be independent,” Vogel says. “Our job is to empower them to step up, own it and be safe.” When Daniel, who was diagnosed at age 2, started elementary school, Vogel had to work very closely with his teachers and the school nurse to ensure that he was removed from his environment as little as possible. “You know your child and their capabilities. The teachers see them as young. It was important for me that he be able to test his blood sugar in the classroom and have lunch with his peers. We needed to educate everyone and prove that he was capable of being responsible.”
Vogel notes that it is key for students with diabetes to have a 504 accommodation plan, which spells out steps the school must take to give students with medical issues the same educational opportunities as their peers.
Over the nine years since Jonathan was diagnosed at age 8, Vogel met other parents with similar concerns, so she started a support group for mothers of children with diabetes. The group meets twice a month — once to address specific topics of concern and once for a happy hour, to socialize with others who can identify with what they’re going through.
Nancy Cohen, a registered nurse and life coach, facilitates the informational meetings. Cohen, who specializes in helping families cope with medical transitions, addresses both medical issues and parenting concerns with the group. “Nancy gives us strategies to grow as a person and to manage the changes,” says Vogel.
The transition from childhood to adolescence can be challenging for all parents, but even more so for a teen with
diabetes. “When they hit puberty, everything is different,” says Vogel. “Their blood sugar levels are up and down. They can’t let their guard down at all with diabetes.” Parents need to prepare for new levels of independence like sleep-away camp, sports and driving. “You want them to have independence, like their peers, but they need to be responsible.” Before he gets behind the wheel, Jonathan is required to test his blood sugar and text the results to his mother, every time. “I tell him, ‘It’s for you and for every driver out there.’ ”
Cohen says, “Parenting pre-adolescent and adolescent children with diabetes is challenging because they’re at higher risk. Letting control go is hard and it’s really scary for this group. Maintaining open communication with their kids is important for building trust and a healthy relationship. I help them understand the stages of development, so they learn what they can relinquish and how they can empower their kids.”
Vogel also has concerns about how Jonathan will manage his diabetes when he leaves for college in two years. He’ll need to do more for himself, such as filling prescriptions and stocking up on medical supplies. This inspired her to help organize a Q&A forum for high school seniors and their parents on “Getting Ready for College with Type 1 Diabetes,” in conjunction with the Juvenile Diabetes Research Foundation, which will be held on April 7, from 5:30 to 7p.m. at Congregation Or Chadash. Speakers will include Cohen and a certified diabetes educator.
Cohen says that when a patient is diagnosed with a chronic or life-threatening illness, the family goes through six stages of grief: shock and denial, anger, bargaining, depression, testing and acceptance. “Coping with a transition forces you to go through all of the stages, whether you are aware that you are ‘visiting’ them, or not,” says Cohen. For example, both patients and caregivers may have trouble acknowledging anger. “It’s OK to be angry. It helps you move forward. If you don’t acknowledge the anger, it stays in the background and comes up when you can’t control it and least expect it.”
This is true whether you are caring for a child, sibling, partner or parent. For couples, the transition to caregiver from years of being in an equal relationship can takes its toll — as can the role reversal involved in caring for a parent. It’s vital for anyone tending to another’s needs to maintain balance in their own life, says Cohen. “You need to be in touch with yourself, with what you need to be happy and whole.”
To ease the way through a transition that may appear to be overwhelming, Cohen says it’s important to look at your goals from several different perspectives. The first step is to establish long-term goals. Then you need to step back, set priorities and create attainable short-term goals. A key to achieving these is accountability, reporting back to a life coach, mentor or friend on a regular basis. “After several weeks of meeting small goals, you feel empowered,” says Cohen.
Whether you are the patient or caregiver, “a medical condition does not define you or your loved one,” Cohen says. “You need to determine what gives value to your life.”
For more information about “Getting Ready for College with Type 1 Diabetes” on April 7, contact Kathy Decker at Kdecker@jdrf.org.
Nancy Ben-Asher Ozeri is a freelance writer and editor in Tucson. She can be reached at firstname.lastname@example.org.