Losing Sleep Over My Father’s Night Terrors
By Stephie Grob Plante
My dad sounds like he’s drowning when he sleeps. He refuses to wear the doctor-prescribed, motorized sleep mask that would make him sound like Darth Vader if he ever wore it. I tell him it could change his life. But my dad says he has a deviated septum, the machine doesn’t work, and he can’t change his life until it’s fixed. I don’t know if he means fix the machine, or fix his deviated septum, or fix his life, but I’m unnerved. We fight a lot about his health, and I’m too tired to ask for clarity.
Right now, it’s late, or early — I can’t decide which. It’s pitch black outside. We’re at an AirBnB in Sedona. I’m on a futon mattress, on the hardwood floor. He’s in a queen bed on the other side of the room. When I turned the lights out, four or so hours ago, he reported that the pillows were bad, and placed a Zorro eye mask over his face. He began snoring within minutes.
I can’t see him in the dark, but I can hear him. The snoring sounds sort of normal. His yowls for help in the middle of the night and his thrashing at dead air are anything but — and yet, they’re routine, too. They’re also terrifying. They’re why I’m awake now.
“ARGH!” he roared only moments ago, and I jolted awake, panicking at first that someone had broken into our rented room and attacked my dad, that I’d be next.
“Dad! DAD.” I need to get his unconscious mind out of whatever scary place it’s in.
“Wuh?” He gasps, disoriented. I ask him if he’s okay. He mutters, “I’m sorry,” and is soon snoring once again.
I’m a big believer in “why.”
I want to know why my dad yells out in the middle of the night. I want to know why he thrashes in his sleep. I don’t want to temporarily, or potentially inaccurately, treat the symptom with over-the-counter sleep aids — which is what he’s taken it upon himself to do, sans official diagnosis.
To me, it’s obvious: How can we fix the problem until we know what’s causing it? What if there’s something bigger going on, something that he and I can’t see? What if there’s something wrong with his brain?
“If you had regular chest pain,” I tell him, on more than one occasion, “and you were coughing all the time, and couldn’t breathe properly, I’d tell you to go get your lungs checked out.”
“Huh,” he replies with a half-grin, every time. “I’d just take a cough drop.”
“But what if you took cough drops for however many years only to find out you have lung cancer?”
Inevitably, this question causes his mood to take a sharp nosedive. If we’re in the same room, he bats a dismissive hand at the air between us and says, “Cut it out.” If we’re speaking over the phone, he comes up with a reason to hang up.
But the not knowing drives me up the wall. I know I’m also driving him up the wall with my badgering him (he tells me so). But his not listening to reason — my reason, specifically — is enough to make me scream. Sometimes, especially when I’m tired, I do.
This is the cycle we repeat every time I find out he’s had an episode.
The episodes, as he calls them, started a few years ago. At first I didn’t think much of them. I haven’t lived at home in over a decade, so my dad’s stories about the weird new thing he started doing in his sleep sounded like something out of a Peter Sellers movie. You jumped out of bed and swiped everything off the dresser with your wingspan? You accidentally flailed your arm into the dog? You knocked over the lamp? My dad is a nonviolent and nurturing man in his mid-sixties. His new sleep habits sounded so dramatically absurd, they might as well have been jokes.
The first time I heard my dad cry out in his sleep myself three years ago — a cry edged with pain and fear — however, I woke up, in every sense of the phrase. As I lay there in the room down the hall from his, freaked, listening to his breath to make sure it sounded otherwise “normal,” my thoughts fixated on his brain. My brain remains preoccupied with his brain to this day.
I tell him to go to a doctor.
“I am a doctor,” he says, and that’s true, but he’s a terrible patient.
“I mean, go to a sleep specialist,” I say, frustrated. My dad is a psychiatrist, and while he’s an M.D., he doesn’t have access to all the medical instruments that, say, a neurologist might use to diagnose him, let alone the plain fact that no doctor should ever diagnose himself.
He tells me he did see a sleep specialist, once, though he didn’t submit to the recommended testing. I know this, and I know what that specialist said, but I ask him to repeat it anyway.
“He said it might be a precursor for some kind of neurodegenerative disease, which I didn’t believe.”
Neurodegenerative . . . Like Parkinson’s? Like, his brain matter could be deteriorating?
My mind snags on his last three words: I didn’t believe. I can feel my blood boil.
I don’t want to believe that there could be a serious issue going on either, but what if it’s the truth? His kindergarten-ish, fingers-in-ears, “la-la-la-I-can’t-hear-you” mode of dealing with this is so counter to everything he as a physician stands for — analytical reasoning! medical evidence! scientific method! — that I almost wonder if he’s lost his marbles already.
“The episodes are less frequent now,” he adds, probably to calm me down. I hadn’t even realized I’d been yelling.
One possibility is that his episodes are “sleep terrors.” The term alone disturbs me.
I call Dr. Mark Mahowald for answers. He tells me, “Sleep terrors are one form of what we call non-rapid eye movement sleep — or non-REM — disorders of arousal.” Dr. Mahowald is one of two experts I’ve reached out to in order to make sense of what’s going on with my dad’s sleep. He’s a retired professor of neurology at the University of Minnesota specializing in a group of sleep disorders called parasomnias, aka strange behaviors that occur during sleep, like sleep walking and sleep talking.
“What you have is the part of the brain that is capable of generating very, very complex behaviors, is awake. At the same time, the part of the brain that typically monitors what we’re doing, and lays down memories for what we have done, is asleep.”
Could this be what my dad has?
Dr. Mahowald tells me that sleep deprivation can make sleep terrors more likely to occur. Most often when I ask my dad how he’s doing, he’ll answer with one word: “tired.”
Maybe exhaustion is part of the cause, not the effect.
My dad is a practiced worrier. He keeps a running tally of all his aches and pains, both physical and mental: an old knee injury, an old shoulder injury, a new neck injury, work stress, home stress, politics, climate change, war, death, horrible and awful things happening all over the world, every day. . .
I ask my dad what keeps him up at night and prevents him from getting a good night’s sleep. Maybe if we can help my dad sleep better, I reason, the episodes might diminish even further.
“Oh, I’m just thinking about wanting to go back to sleep,” he says. “Nothing major on my mind that I’m ruminating about.” And then, just as soon as he’s answered definitively on the one hand, he doubles back. “But, you know, sometimes, I think about it, if I’m calling out to others, it’s like I’m aware that there’s danger in the environment.”
“Life is a parking lot,” he’d tell me throughout my childhood: We never know when something big will back up, and mow us down.
The world, for my dad, I think, isn’t full of opportunity. It’s full of obstacles, obstacles with highly probable horrible outcomes. I know I should avoid assuming I’m an expert on the inner workings of his mind. But truthfully, my world view nowadays is pretty similar to his. Anything could happen. And it could be terrible.
Yet stress is a whole lot more palatable than a future neurodegenerative disease diagnosis. Could it just be that his cyclical thinking is disturbing his sleep cycles? I pray it is.
“Psychological stress can exacerbate the parasomnias,” says Dr. Alon Avidan, director of UCLA’s Sleep Disorders Clinic and Neurology Clinic, another expert I’ve sought out to counsel me over the phone. Many of his patients, he says, report heightened sleep disturbances when they are under psychological stress — “that’s the time when their episodes are more profound, and more aggressive.”
More profound. More aggressive. A contributing factor, but not why.
There’s another type of sleep disorder that might actually be closer to what my dad experiences, I learn as I chat with Dr. Mahowald and Dr. Avidan further. REM sleep behavior disorder (RBD) is associated with vivid dream meditation, where people often act out their dreams.
“Usually, the dreams are not very pleasant,” says Dr. Avidan. “What [RBD patients] tell us is that they’re punching, kicking, screaming, yelling, and it’s usually in response to someone trying to confront them.”
I ask my dad if his dreams are always scary.
“Yeah. Yeah, there’s always a fear component.”
The terrible news, the information I dread relaying to my dad, is that an individual with REM sleep behavior disorder has a very high risk of developing a neurodegenerative disease, namely Parkinson’s disease or Lewy body dementia.
I feel even more desperate now for my dad to submit to a sleep study than I did before — and furious that he won’t.
“Because the future prognostic indications for neurodegeneration are so clear and so important, it’s obligatory that these patients undergo sleep studies so that we can tell them for sure,” says Dr. Avidan.
Answers are at our fingertips. All my dad needs to do is go. So, why won’t he?
I ask my dad if he’s resistant to get a full workup because he’s afraid of what the definitive answer might reveal about his health.
“Oh, no, no, no,” he says. “I want to know. When an event happens, I find it demoralizing, yeah. Because I do worry about it, I’m wondering about the implications, because number one, I’m really anxious about hurting myself, falling out of bed, I’ve done that once or twice. . . And then I do wonder about this possible Parkinson’s connection.”
“The episodes are diminishing,” he says again, because again I’ve groaned. “It seems to be less.”
Seems to be? Can I trust him on that? Me being me, I can’t. I think about these episodes all the time, whenever I think about my dad these days. I feel myself fall into a tailspin of perseverative thought as I read up on REM sleep behavior disorder and non-REM disorders, and ask renowned experts hypothetical questions that can never fully get me at a satisfying answer.
Later, my dad and I talk about how I wish he wouldn’t worry so much. Hard science negates my old idea that worrying could be causing his episodes, but worrying can’t possibly help them either, I contend.
“Would you say that you’re a worrier?” I ask him.
“Yeah, I tend to worry,” he says. “Sure — I inherited it from you.” He laughs.
I laugh back, because the reality of what he’s said is so true it’s painful, and so painful it’s ridiculous. He ruminates, and I ruminate. He concocts irrational doomsday scenarios for all his loved ones, and so do I. I worry about him probably just as much as he worries about me.
I’m just like him.
I do want answers. But more than that, I want my dad to not feel afraid, and to not feel alone. If his fear feels anything like mine — constant, unabating, incessant — then it must hurt like hell.
The sun’s up now, and my dad finds me on the patio of our rented guesthouse in Sedona. He feels awful that he had an episode during the night, and I tell him it’s okay, that I love him, and that I’m sorry he has to go through this. It sucks.
He says he had the craziest dream.
“There was a cult, a religious cult. And there was this woman, and I was trying to get her out of there, so I kept reaching out, and reaching out, and then I’m punching the air, and punching and punching and punching. And, I think I tweaked my shoulder.”
I tell him we’ll get ice on our way out of Arizona, and it’s good we’re up, because now the two of us can get an early start.
Lead image: flickr/Mac Coates