We T1D Parents are So Tired
Recently, we did some family travel to a different time zone and I found that every night — around midnight local time, and just as we were finally falling asleep — my daughter’s alarms went off, indicating that she was low. And it wouldn’t be just any low. It was the arrow-straight-down kind of low, the kind that means you know you’re going to be up for a while. Nights like that cancel out a lot of the beauty of a vacation.
Ah, sleep! Truth is that we parents of T1D kids are all exhausted. Sure, my life is easier now that we use the Tandem-Dexcom loop, but that doesn’t mean that I always get to close my eyes when I’m actually tired. There are still plenty of nights that the alarm startles me awake and I haul myself out of bed so I can fumble in the dark for juice and a straw. Let’s put it this way: When I’m talking to a friend and they tell me that they are tired, they often back up, noting with deference that I’m probably far more tired than they will ever be.
It does feel like this is the kind of problem that has no solution. After all, we do need to be sure that the kids are safe, even if it compromises our sleep. But we still have to figure out a way to put on our own oxygen mask. Bottom line is that we can’t continue to help our T1D child (or our other children, for that matter) if we’re so sleep deprived that we aren’t functioning well.
Over the years, I’ve learned a few tips for protecting sleep that I’m going to share with you here. Full disclosure: Some of these are hard. It’s not surprising that we would want to be watchful all the time. The trick is to find a balance so we are taking care of ourselves as well. So here are some tricks for getting a better night’s sleep as a T1D parent:
Make sure you have as few alarms going off in your bedroom at night as possible. I know one family that has four(!) different devices alarming to let them know if their daughter goes low. Don’t do that to yourself! Remember that you’re probably already on high alert about diabetes — that first alarm will likely do the trick. If you’re worried that you won’t wake to a low alarm, for example, set the alarm a little higher so you’ll have a chance to catch the second alarm. Ditto if your child isn’t on a CGM and you’re setting an alarm to wake and check them. Just set the one alarm. If you press snooze once or twice, and wake 15 minutes later, it’s unlikely to make a big difference in your diabetes intervention.
Don’t peek! This is specifically for those of us with CGMs. I know it’s tempting when you wake a little to roll over to just look and see if your child is in range. Frankly, I’m guilty of doing it way too much. But I know that I sleep much better when I don’t. Set your CGM alarms where you want them to be and trust that they will wake you. Some of what makes our sleep so tough is that we are primed to wake all the time, worried about that next emergency. For our sanity, we have to help our bodies and our nervous systems stand down. Creating conditions that allow that is a first step to better sleep.
If at all possible, keep your phone out of your room. I know that this one doesn’t feel possible for many of us; we use our phones as Dexcom follow devices. But if there’s a way for you to ditch the phone—maybe you can reliably wake up to your child’s CGM going off down the hall, or maybe you can sleep with the receiver by your bed—I’d encourage you to try it. Research shows that simply sleeping with your phone in your room is disruptive. Now imagine if you sleep with it tucked under your pillow so you don’t miss any alarms. Again, we’re talking about helping your nervous system to unwind at night and give you a chance to get the sleep you deserve.
Change off with your partner or ask for nighttime help from a family member or good friend. If you’re the one on tap most nights and you’re needing a break, see who can give that to you. Maybe it’s your partner’s turn to take a few extra shifts. If they’re able, see if you can go sleep somewhere else (and leave your phone behind!) so you don’t even have the temptation to be connected. If you are single or your partner can’t take on more, see if there’s someone outside the house who can help. You’d be amazed at how much better rested your friends and family members are than you: Often they are happy to lose a night of sleep to help give you a break. And, yes, they won’t manage as well as you do, but that’s okay. Getting the help — and the sleep — is an important trade off for one less-than-perfectly-managed night.
Finally, and likely most controversially: change your settings. Of course, before you do this, check with your doctor or CDE, but remember that it’s a reasonable trade off — just for a night or two! — for your child to run a little higher so you can get some sleep. Again, talk to your endo before you do this and have them help you figure out how to make the shifts you need.
Remember that these solutions aren’t always easy — personally I have to give myself some very strict lectures to not check numbers in the night. The other thing I do, though, is make sure to weave in a little time for a quick nap when the night is particularly bad. Fifteen minutes of shut eye midday can make a big difference.
As always, I’m curious about what you try so let me know what you do and what works or doesn’t work for you. Feel free to email me.