Parenting a child with type 1 diabetes (T1D) is beyond a full-time job, often taken on by whichever parent plays the primary role in daily child care. But what happens when a family is split into two households by a separation or divorce?
As if as the hour-by-hour detailed maintenance required by this disease weren’t enough, juggling the needs of a child’s T1D between two households can become remarkably complicated and stressful.
DiabetesMine looked into what can make managing T1D within a separated or divorced family especially challenging, and what can make it more successful. Not surprisingly, the repeated message we found was that communication is key.
“When a child is diagnosed, we are all very, very careful to ask about the family structure and who will be involved in this child’s diabetes care when we first meet the family,” explains Dr. Lindsey Loomba-Abrecht, pediatric endocrinologist at UC Davis Health’s Children’s Hospital in Sacramento, California.
“We train and educate anyone who would be involved in that patient’s diabetes care,” adds Loomba-Albrecht.
“But what we don’t do enough of is recognizing when a patient who’s had diabetes for a while ends up with split households. And parents don’t usually volunteer that information unless we specifically ask — which we wouldn’t because there’s already so much information to go over in such little time at a routine but busy clinic visit.”
What if one parent had never really made those day-to-day diabetes decisions before the separation, and now the child is living with that parent half the time?
Of course, the younger the child, the more of a challenge this becomes because you cannot depend on the child to communicate changes in their insulin doses, for example, to the other parent.
“You absolutely need a good system for relaying diabetes information to each other,” says Loomba-Albrecht. “This can be very challenging if the parents aren’t on good terms. We’ve had really contentious situations with parents that don’t communicate well to each other, so we do our best to communicate to both households.”
Loomba-Albrecht emphasizes that for many separated or divorced families, communication issues between the two parents can become the greatest obstacle to the child’s overall diabetes management success.
Unfortunately, relying on the child’s healthcare team isn’t enough because of the daily demands T1D presents. Finding a successful working relationship with your ex-partner or ex-spouse is a critical part of helping your child thrive with T1D.
Factors that can affect a child’s diabetes management between one parent’s home versus the other’s include having different:
- diabetes management knowledge and experience
- activity levels (a lot of TV vs. a lot of outside activity)
- nutrition habits and choices (fast food vs. homemade meals)
- food rules (treats allowed vs. sneaking food or extra meals)
- diabetes-related habits, rules, and expectations for the child
- relationships with each parent (trust vs. lack of trust, lying, etc.)
- involvement levels in diabetes tasks (counting carbs, calculating doses, reviewing blood sugar levels, etc.)
“Again, disproportionate diabetes management knowledge between the two parents is a very common problem, and after a separation, especially when one parent had been primarily in charge of diabetes management before,” says Loomba-Albrecht. “It can be very hard for that parent to relinquish control when the child is spending time at the other parent’s house.”
To the primary parent’s credit, that struggle to relinquish control is likely fueled by a fear for the child’s overall safety, but this should become more of a reason to help the other parent gain more diabetes management knowledge.
Sometimes, Loomba-Albrecht shares, she’s seen blood sugar logs or continuous glucose monitor (CGM) data that look vastly different at one house compared to the other.
“A child may tell one parent they took their insulin or checked their blood sugar when they didn’t, and one parent may not know how much they can trust what the child says,” says Loomba-Albrecht. “Or one parent may see more of what’s going on, the bigger picture.”
When Jeremy Rolfsmeyer’s son, Thaymen, was diagnosed with T1D at 9 years old, his parents had already been divorced for nearly 7 years. While he lived with his father in Great Falls, Montana, his mother moved 80 miles away, remarried, and gave Thaymen two younger half-siblings.
Despite the fact that the divorce was not fresh, Rolfsmeyer says things were not especially cordial prior to Thaymen’s diagnosis.
“It wasn’t the cleanest divorce and it wasn’t the messiest, but things were still difficult,” recalls Rolfsmeyer.
“His mother was still in control of most of the bigger decisions for Thaymen. Her new husband didn’t like it when she and I communicated. We still had a lot of things we were both hurt by that we hadn’t let go of.”
Thaymen’s diagnosis and hospitalization occurred when he was with his father, with mom still 80 miles away.
“Once he was stable and we’d gotten through the ER and admitted to pediatrics, I called her and said, ‘You need to come here now. There’s a lot we need to learn.’”
Not knowing much about diabetes at the time, Thaymen’s mother didn’t realize the severity of what managing and living with this disease was going to entail, but she arrived quickly.
“When she got to the hospital — but before she went into his room — I said, ‘I know that up to this point, we’ve argued and bickered and fought. But what you’re about to walk into is going to change your life, my life, and his life, and how everyone in our family operates on a fundamental level.’”
Rolfsmeyer expressed adamantly to his ex-wife that managing their son’s new diagnosis would depend heavily on their ability to communicate with each other.
“Everything is in the past,” Rolfsmeyer recalls of burying the hatchet with his ex. “We need to all pull in the same direction because this affects all of us and it means his life. Whatever issues we had, it’s done. We have to drop everything we’ve argued about and move forward.”
Rolfsmeyer recalls that his ex-wife thought he was overreacting at first, but as Thaymen and his family learned more and more about T1D, she realized the intensity and demands of the disease.
“She said, ‘Okay, I get it now,’” adds Rolfsmeyer, “and we agreed I’d be in charge of making all the major diabetes decisions because I was hyper-focused on the science. It scared the crap out of her and was really overwhelming. This was a big change because for the 7 years prior to that, she was in charge of every major parenting decision.”
The list of reasons a marriage might end is endless, and some of those reasons might obviously mean a parent should not co-parent, especially when it concerns the intense responsibilities (and potentially life threatening consequences) of T1D.
“Not every relationship can successfully co-parent,” adds Rolfsmeyer. “There are those break-ups and divorces that happen where it’s simply not in the best interest of the child for both parents to be involved.”
Whether one parent is struggling with abuse, alcoholism, drug addiction, mental health issues, denial, neglect, etc., are all obvious reasons to avoid co-parenting if the child is not safe with that parent. When faced with these issues in one parent (or possibly, in both), the court system should rightfully be involved.
But for the average divorce of two reasonably healthy individuals who both deeply love their child and are capable of caring for them safely, Rolfsmeyer says there are a few critical steps for the sake of your child’s T1D.
“First of all, everybody needs to step back and realize that this child is not a possession. They’re a human being who — if possible — needs both parents in his or her life. And nothing should get in that way of that fact. Whether it’s a new partner or different towns, everybody in that child’s family has to make that sacrifice.”
“Secondly,” adds Rolfsmeyer, “the two parties really need to forgive each and be done with the anger. I don’t care if somebody cheated or whatever it is, forgiveness has to happen. The animosity has to go away. For the sake of your child, there has to be open and fair communication.”
Rolfsmeyer knows all too well that this is more easily said than done.
“It’s hard,” he recalls. “There were a lot of things we each did in the marriage that we had difficulty getting over. But the second he was diagnosed, we had to.”
Imagine if one parent is looking at their child’s CGM graphs and making little tweaks in basal insulin doses while the other parent is also looking on from another location and also making little tweaks…
Clearly, too many cooks in the kitchen is a dangerous approach to T1D management. At the same time, however, everyone in the family needs to learn enough to ensure they can properly support and care for the child so they can spend nights at mom’s house, dad’s house, auntie’s house, grandma and grandpa’s house, etc.
Inevitably, one parent or adult member of the family is likely going to be the lead in T1D management. Indeed, Rolfsmeyer became the family leader in his child’s diabetes management.
A marketing manager for Harley Davidson in his day job, Rolfsmeyer is like every other parent of a child with T1D: a full-time pancreas substitute. But while dad is the lead, other family members need to be prepared to step in on Thaymen’s care when he is with them.
“Thaymen spends time at my house, his grandparent’s house, and his mother’s house,” explains Rolfsmeyer. “There’s a different level of understanding and education on all three fronts.”
Rolfsmeyer describes himself as an “obsessive-compulsive” learner who dug deep into the science of the disease, questioned the vague guidance and education from the healthcare team who discouraged him from worrying about high blood sugars, and sought to learn as much as possible about day-to-day insulin management.
“At first, the endocrinologist said things like, ‘It doesn’t matter how high he goes, as long as he comes back down within 3 hours,’” recalls Rolfsmeyer, who felt that old-school diabetes philosophy wasn’t good enough for his son’s health, especially considering remarkable advances in diabetes technology and insulin options.
Thaymen’s mother looks to Rolfsmeyer for instruction and guidance too, and he says she is always open to learning more and understanding more every step along the way.
“She will call me when there’s an issue or a question, explain the circumstances and ask what to do. I try to always explain why that blood sugar fluctuation is happening so she can learn,” adds Rolfsmeyer.
Grandma and Grandpa viewed Thaymen’s diabetes management differently at first.
“They are from a generation that believes the doctor knows best, listen to the doctor,” says Rolfsmeyer. “But I’ve explained to them that all they teach are the survival skills. The rest is up to us.”
Rolfsmeyer also sought education and support in achieving healthier blood sugars for his son from Scott Benner’s Juicebox Podcast — on which he has been a guest, discussing Diabetes & Divorce. He also credits learning from the Juicebox Facebook group filled with other mission-driven parents.
Today, Thaymen’s team with mom, grandparents, and dad at the helm has helped him live a very full and healthy life with T1D. Thaymen’s success depends tremendously on the ability of these adults in his family to communicate positively and frequently with each other.
“At this point, my ex-wife and I are better friends now than we ever were married,” says Rolfsmeyer, setting a gold standard for any separated or divorced readers. “We talk regularly on the phone and not always about diabetes. We had to let go of everything from the past, and it was worth it.”