Sleep: How Can We Get Shut-Eye When It Feels So Out of Our Control?

(Note: This is third in a series of health-related posts that frame each topic in terms of the particular struggles busy, stressed-out, exhausted caregivers experience. Information is pulled from current research that might be most beneficial)

First, the bad news when it comes to sleep research: It never takes people like caregivers into account. This is often because we have a set of challenges so intractable and unique that they exist in a category of their own. When we take care of people with neurological differences who wake often and do not sleep deeply, the truth is that our loved ones are in charge of our sleep schedules. When our child wakes up, we cannot simply ignore their needs, turn over, and go back to sleep. Instead, we must get up—sometimes multiple times per night—and deal with things like crying, head banging, moaning and groaning, or beeping medical equipment.

Over time, this cycle of being jerked awake by stressful issues that require immediate attention creates unhealthy brain patterns. When we are conditioned into a nightly state of hyperarousal, we undergo our very own insomnia training program. This “program” would be bad enough on a temporary basis, but it can often last for months, years, or even decades. So what is a caregiver to do?

I have spent a fair amount of time struggling with this question. Off and on, my daughter, JJ, has sleep troubles that take a heavy toll on me. She can wake up screaming, biting, pulling her hair, or vomiting—all of which require a nearly instant response. Those years spent rushing to her bedside, heart racing, have left their mark on me. They have made me into someone who can wake during the night for no apparent reason and then worry myself through the remaining hours until morning. Sometimes, I even hear "phantom" screams that set off my nervous system when no real stimulus is present.

However, after reading current sleep research and advice, performing an observational study on myself, and spending about six months experimenting with a variety of changes to my sleep routine and environment, I now sleep as well as can be expected. Though things are still tough when JJ is sick, I can mostly sleep through the night or get back to sleep when needed. The advice contained in this post is based on these personal experiences.

In order to understand the true scope and complexity of caregivers’ relationship to sleep, I find it helpful to consider sleep from three points of view: situational, practical, and psychological. So ask yourself three questions. How can I change the situation (i.e. the fact that middle-of-the-night caregiving is required of me)? What can I do on a practical level to improve my sleep environment? And are there ways to reduce the psychological distress that also keeps me awake?

More than anything, it is worth trying to get temporary relief by addressing the root issue, or the situation. It can be extremely difficult to achieve, but time at night not spent in a state of heightened arousal leads to deep, restorative sleep—something in short supply for us. Often, this is only possible when we aren’t on night duty. Hiring a night nurse, taking turns with a spouse/relative/friend, or spending an occasional night in a hotel are ways to get such relief. Unfortunately, they all require money and/or help from others but, if possible, they are a wonderful investment.

But what if these things are not possible, or not available on a regular enough basis to make a significant difference? Here is where sleep research can help us in some very practical ways. After doing a deep dive, I have come to believe that, for caregivers, it is more about avoiding the things that make our sleep worse than shooting for perfection. We simply do what we can to create a calm nighttime environment so that we can go back to sleep after the crisis is over.

First of all, I recommend performing an observational study on yourself for several weeks. What are the things that tend to wake you and how do you feel afterward? Is there anything you do right before you go to sleep that makes things worse? How do you respond to light, noise, alcohol, caffeine, and temperature?

Though it was difficult, I ended up giving up alcohol because even a single glass made sleep impossible. I also reduced my caffeine intake. Because I am very sensitive to temperature and noise, I bought a Chilipad and earplugs that fit perfectly. (Don’t worry, I can still hear if JJ cries urgently enough). Because light also makes a big difference, I bought blackout curtains, stopped looking at screens before bed, and dimmed the lights in our bedroom an hour or so before bedtime. I also installed red nightlights in the bathroom and near JJ's bed because this type of light is minimally disruptive to sleep and circadian rhythms.

However, we all know that many of the real reasons we cannot fall easily back to sleep have nothing to do with our sleep environment. In fact, one researcher admitted that working on sleep hygiene without addressing the problem of a sleeper’s conditioned arousal and psychological issues is like flossing when you have a cavity. Not exactly helpful.

This is because at the end of the day, psychology is really the crux of our sleep issues. It’s not just the midnight diaper change, the two am meltdown, or the three o’clock seizure. It’s the shape our brains are in after we have dealt with whatever stressful issue has presented itself. Not only are we awake, but we are also often in a distressed psychological state and have difficulty calming down. Our children might be the reason we wake up, but our brains are the reason we stay awake. So, what can we do about this?

Luckily, there are several tools available when it comes to the worry, distress, trauma, and hypervigilance our brains encounter. For anxiety, I found a low-tech but effective way to cut down on my nightly worries. I kept a worry journal that I filled out every evening before going to bed. Another tool with a lot of scientific evidence behind it is CBTI, or cognitive behavioral therapy for insomnia. This is a structured program that helps change negative thoughts and behaviors that interfere with sleep. Though best done with a professional, there are plenty of free or low-cost CBTI apps. And, as discussed in a previous post, EMDR—eye movement desensitization and reprocessing—can help reduce trauma-induced stress and worry. In addition, there are many other methods to relax your mind and body, such as yoga, meditation, visualization, progressive muscle relaxation, and listening to binaural beats.

To top this all off, try increasing something called your “sleep confidence.” If you worry about sleep itself, or if you suffer from misconceptions about it, this can worsen your ability to fall back to sleep. First of all, try not to be too hard on yourself. Remember that you are a victim of circumstance, and your brain is just doing what brains are programmed to do. Remind yourself that there is research showing that insomnia is not as dire as the media makes it out to be. People function better without a full night’s sleep than they think. (Though they do have to work extra hard on those days). And lastly, know that even just resting can be helpful for the body and restorative for the mind. In fact, there is now scientific interest in "non-sleep deep rest," or a relaxation technique that slows the brain's electrical waves in ways similiar to sleep and can be very refreshing, even when done for short periods. (I myself have benefitted from this). Over time, if you work on changing your perspective about sleep, you might find your confidence returning.

Lastly, there is some promising research about supplements that can help mitigate the effects of sleep deprivation. I take one called creatine. Taking this supplement at the right dosage has been shown to improve the fatigue, cognitive difficulties, and mood issues associated with lack of sleep. Of course, it is not a cure and should not be taken at high doses long term, but if you take regular creatine--which can also help with bone and muscle health, cognitive function, and overall functioning under stressful conditions--a temporary bump in dosage after a bad night's sleep can help. Of course, ask your doctor about creatine and about any other vitamins, supplements, or medications that might help someone who is chronically sleep deprived.

Caregiving for a loved one who does not sleep well is not a simple problem, so it is unlikely to have a simple solution. As was the case for me, your journey might involve a good deal of time and trial and error. You might also end up relying on a combination of different tools, rather than just one or two. And the harsh truth of the caregiving life is that we may never sleep as well as we would like. However, we can still work towards sleeping well sometimes or less badly over time. Because even a moderate amount of progress could result in increased energy, less stress, and a little more of that much-needed shut-eye.

Join us in the next post to learn more about caregivers and nutritious eating.