The Night Shift Nobody Warned You About: Surviving Lewy Body Nights

The punch came out of nowhere. One minute your person was sound asleep, the next he was swinging at somebody only he could see. He slept through the whole thing. You have not really slept since.

A few weeks ago I gave you the whole Lewy body picture. Today we are moving into the bedroom, because the nights are where Lewy body caregivers get worn down to a nub. Consider this your night shift manual.

The sixty second refresher

When most of us dream, the brain flips a switch that keeps the body still. With Lewy body, that switch is broken, so the dream plays and the body acts it out. Punching, kicking, shouting, diving out of bed. It is called REM sleep disorder, it often shows up years before anything else, and your person is not doing it on purpose. They are fighting the bear in the dream, not you.

That is the what. Here is the deep dive on what to actually do about it.

Your 2 AM playbook

Your instinct is to grab them and shake them awake. Try not to. A hand clamping down in the middle of a bear dream feels like the bear, and the alarm in their brain goes off. Now you have a fight that neither of you started.

Here is what has worked for me. Stay out of arm’s reach. Keep the lights low. Use a calm, low voice, say their name, and keep it short: “You’re safe. You’re home in bed.” Then wait. Most episodes burn out on their own, and your only job is keeping both of you in one piece until it does.

If they wake up scared, resist the urge to explain that it was not real. Their reality is real to them, even at 2 AM. Try “That sounded scary. You’re safe now” and leave it there.

And in the morning, skip the quiz. “Do you remember what you did last night?” never goes anywhere good. They usually don’t, and if they do, they feel awful. Let the night stay in the night.

Give the bedroom a night shift makeover

People living with Lewy body are the highest fall risk of any type of dementia, and a lot of those falls happen climbing out of bed. The good news is that the bedroom is the thing you can actually control. A few ideas that may help: drop the mattress lower or put it on the floor for a season. Slide the nightstand out of swinging range and clear anything hard, sharp, or breakable. A folded comforter on the floor beside the bed catches a tumble better than hardwood does. If you share the bed, a body pillow between you is a surprisingly good bouncer.

One caution before you buy anything: think twice about bed rails. People with dementia tend to climb over them, and that fall is worse. Ask the doctor or an occupational therapist first.

Here is what I use instead. Slide a large pool noodle or a set of bed bumpers under the fitted sheet along either side of the bed. Think of it as a speed bump, not a wall. It helps keep your person from climbing out of bed, and when they do try, it slows them down enough that you can reach them before they reach the ground.

And if you sleep in another room, a bed alarm is the other half of the team. The one I recommend does not sound in their room and startle them awake. It alerts you instead, so you know the moment they start getting up and can get to them before their feet hit the floor. These two are game changers for the night shift.

And if you have already moved to the guest room, hear me. You did not fail. Sleeping apart when the swinging starts is a smart caregiving call, and a rested caregiver is a safer caregiver.

The morning after: good days and bad days

Lewy body swings, and the nights and days talk to each other. A wild night usually buys a foggy day. So instead of fighting the swing, work with it.

Try keeping a simple sleep log on the nightstand. One line a night: wild or quiet. One line a day: sharp or foggy. After two weeks you will see the pattern, and your doctor will want to see it too. Save the big stuff, like showers, appointments, and visits, for the days after quiet nights. Shrink the plan after the loud ones.

One more thing. If quiet nights suddenly turn wild out of nowhere, think pain or infection before you think “the disease got worse.” UTIs are notorious little troublemakers.

Before anyone prescribes a sleep aid

People living with Lewy body can react badly to medications that are routine for everybody else. I walked through the specific ones to watch for in my Lewy body overview, so before any new sleep medication, bring that list and your sleep log to the doctor and ask what is safest with Lewy body. At my memory care homes, sativa cannabis helped many of our people living with Lewy body sleep. It worked most of the time, not for everyone. Leaf 411 (leaf411.org) is a free cannabis nurse hotline, and my cannabis and dementia training goes deeper.

Protect your own sleep too

You cannot work the night shift and the day shift forever. Nap when they nap and skip the guilt. If family offers help, hand them a night, not an errand. Nobody hands you a training manual for night duty, and you are out there doing it anyway on broken sleep. Remember, this is hard, but we can do hard things.

Want the whole Lewy body picture?

I just taught a full training called Lewy Body Dementia: What Nobody Told You, and the replay is ready for you. Watch it whenever it’s convenient for you, because I know caregiving isn’t on a schedule.

And if you want something to keep on that cleared off nightstand, my $9 Lewy Body Dementia Everyday Care Companion is a 13 page playbook for the everyday moments, including the ones that happen in the dark.

You do not have to figure all of this out on your own.

💜 Joanna