Imagine that your young child has a chronic condition requiring you to remain alert for nighttime medical emergencies that risk permanent injury or death. My husband Sam and I have lived this reality since our 8-year-old son Casey was diagnosed with type 1 diabetes (T1) over two years ago. The demands of round-the-clock vigilance and care differ by chronic condition, but studies find that all have the same effect on caregivers: chronic anxiety, frequently disrupted sleep, too little sleep and daytime fatigue.
A 2022 study in Diabetes Care for Children & Young People reported that nearly half of its 205 T1 caregivers slept less than 6 hours a night, with a third of those sleeping less than 5.
Nearly 60% found it hard or very hard to fall asleep within 30-60 minutes, and 70% said their sleep quality was bad or very bad. The words of a T1 parent in a 2019 study in Behavioral Sleep Medicine echo a universal in 24-hour vigilance: “I just don’t get a full night’s sleep, ever. I just feel like I’m constantly tired.”
Roughly 20% of caregivers in the 2022 study reported problems staying awake during driving, eating meals and social activities. The authors concluded that “These exhausted caregivers provide a very precise level of care to children while often maintaining full-time jobs. Therefore, it is not surprising that over 60% of [them] reported that it was somewhat, or a very big problem…to keep up enough enthusiasm to get things done.” Nor is it surprising, as other studies find, that continual sleep deprivation tended to impair their cognitive functioning, emotional wellbeing, physical health, relationships, self-care, work performance and quality of life.
But precisely why does T1 require unfailing nocturnal vigilance and caregiving, and precisely how do they, in turn, cause sleep deprivation and crushing fatigue? And, do recent advances in diabetes technology tend to reduce, increase or just change the burdens on T1 caregivers and individuals with T1?
Caregivers managing T1 fear nocturnal hypoglycemia (low blood glucose, BG) above all else. They dread sleeping through an extreme drop in BG that leaves their child dead in bed (DIB).
DIB is the phenomenon where an individual with T1 went to bed seemingly perfectly fine and is found dead in an undisturbed bed. Parents in the 2019 survey repeatedly voiced this fear. “I don’t want to wake up in the morning and go to wake her up and she’s dead.” And, “I’d hate that she went into a …diabetic coma when… I’m asleep in the next room.” Diabetes UK estimates that DIB accounts for 6% of deaths in people with T1 under age 40. Although it is described as “relatively rare,” no parent wants to risk it. Technological failures are also rare, and while parents value and depend on technology, they can’t bet their child’s life on it.
A 2021 synthesis of research findings, in BMC Pediatrics, describes how parents ease their fears of hypoglycemia by testing BG regularly throughout the night, leading to exhaustion and chronic sleep deprivation. Others reduce anxiety by erring on the side of letting BG go high during the night to avoid lows. All tend to worry about both, however, because frequent hyperglycemia and hypoglycemia both do long-term harm, especially to developing brains and bodies. Children with T1 are especially susceptible for a sustained hypoglycemia, which can do permanent neurological damage as well as increase the odds of having more hypoglycemic events. Repeated episodes of hyperglycemia progressively damage multiple organ systems, from eyes and heart to kidneys and peripheral nerves.
When a child wears a continuous glucose monitor (CGM), it’s far easier, less intrusive, and more informative to receive BG readings electronically every 5 minutes—in the comfort of one’s bed—than to go test the child’s BG with fingersticks. However, CGMs prompt more nocturnal monitoring—anxious checking—partly because caregivers fear not hearing or receiving its alarms, and also because CGM readings reveal that nighttime glucose levels are even less predictable and more variable than parents realized. For instance, prior food intake and physical activity can have delayed effects during the night. As a parent in the 2019 study explained, “…since we’ve had the CGM it’s opened [our] eyes a bit more to what happens in between [fingersticks] when you think she’s okay.”
Parents who get up—or delay going to bed—to treat their child will stay awake for at least another 20-30 minutes monitoring the CGM’s successive 5-minute glucose readings to determine whether they have administered the right amount of glucose (or insulin) to treat—but not overtreat—a low (or high). Overtreatment often puts BG on a rollercoaster of lows and highs, themselves needing treatment. Not surprisingly, it can be difficult to fall asleep after mobilizing oneself to decide the appropriate treatment, administer it and monitor BG response. Caregivers may be reawakened by more alarms after finally falling back asleep.
The new CGMs and insulin pumps, especially when combined to create a closed-loop system (an “artificial pancreas”), have revolutionized life with diabetes. No longer do T1 caregivers and individuals with T1 need to rely solely on manually checking BG or injecting insulin periodically throughout the day. By communicating with each other, these two technologies allow tighter control of BG levels: more time in the normal BG range, fewer episodes of hypoglycemia, and a lower A1c (3-month BG average). Some health professionals suggest that their success in improving T1 outcomes while reducing the rigors of daily care means they can also reduce the chronic anxiety and sleep loss among the individuals providing that care.
Unfortunately, that’s not been our experience since moving Casey to a closed-loop system last year. We wouldn’t ever want to give it up, but we know it can’t eliminate life-threatening T1 emergencies. So, while it helps us to better protect Casey’s health and safety, we must remain perpetually vigilant. We are our son’s last line of defense, with or without technology. That is why T1 parents soldier through the anxiety and exhaustion.
Lisa Seitles
Hammonton
Lisa Seitles and her husband Sam are the owners of READ Preschool and Camp Tuscaloosa. They have four children and are active members of the community.