Ch.14. Waking Dreams, RBD, and Sleep Deprivation.
Recently I awoke around 1 a.m. feeling chilly. Oddly, the blankets had disappeared. I heard noises from Pat’s side of the bed and asked if she were OK. “No,” she answered, “I’m trying to keep the boat from sinking.” She had thrown the blankets out of the boat to keep us afloat. With Pat’s agreement I turned on the lights. She looked terrified, which was understandable given she had been fighting for our lives in her dream. Within a few minutes, though, her fears began to ebb as she realized we were in a bed and not a boat. Still, it took about 30 minutes before we both felt safe enough to turn the lights off.
REM Behavior Disorder (RBD) is the official title for this type of event. Our St. Paul group facilitator, Paula Biever, calls them waking dreams. I prefer this term because it describes Pat’s actions so accurately.
This was the first time Pat had to keep a boat afloat. But I’d guess she has vivid waking dreams every 2-3 days. Most frequently they occur in early morning, probably during the last REM stage before waking. At that time of day, I find it difficult to distinguish them from her more typical hallucinations. Maybe the difference is that when she hallucinates, she sees people who aren’t there; when she has a waking dream, she interacts with them.
Our brains are supposed to shut off the possibility of movement when we sleep so we aren’t active during the period when we dream the most, labelled REM (for rapid eye movement) sleep. Unfortunately, this process sometimes fails for people with Lewy Body brains. Movement isn’t completely disempowered during sleep. And, problematically, occasionally muscles remain active. When that happens people with Lewy Body “act out” their dreams.
Waking dreams interfere with sleep. First, they disrupt the normal flow of restorative energy that normal sleep provides. Secondly, they create emotional crises that make it difficult for Pat to get back to sleep. Consequently, I think Pat suffers the effects of long-term sleep deprivation, especially fatigue and low energy. Meanwhile, between the 2-3 times a night my prostate tells my bladder to get up to pee, other occasions when I simply wake up in the middle of the night and can’t get back to sleep, and Pat’s not infrequent waking dream episodes I’m also struggling more than ever before with tiredness, sometimes bordering on exhaustion.
More generally, sleep has become a problem for both of us. Pat sleeps for long hours but very lightly. I seldom hear the natural deeper breathing sounds of good sleep. And often she tells me she’s been resting but not actually sleeping.
There are both informal and formal sleep medications, of course. So far, though, I think we’re better without them. For one thing, I want to be able to wake up fully functioning rather than groggily from medications. And Pat needs to have a sense of safety. This applies to both of us, by the way. It’s hard to go back to sleep thinking about what bad thing might happen next. Pat must also be careful not to take anything that might interfere with her thinking. But I do plan to ask Pat’s doctor about medication to lessen her waking dreams at our next appointment.
Here's the bottom line: It’s hard to go back to sleep thinking about what might happen next.
Pat’s comments on Waking Dreams, RBD, and Sleep Deprivation.
Waking dreams are just kinda a mess. Go back to sleep is the best solution….It works as well as anything else.
These dreams occur most often when I am very tired, confused and don’t know what to do. Then suddenly I take it in and I feel lost, that something awful is happening, and whatever It is, it’s my fault and I have to fix it. Unfortunately, sometimes I must wake Ron up to see that he’s ok. He reassures me he is, and that I’m ok too. I do my best to calm down. Sometimes I can do so right away; other times it takes a longer while.
He is very nurturing in these situations. I have learned to listen to him and trust him and have the confidence to discuss the worst waking dream here. Ron has been helpful—even beautiful –about reassuring me and being willing to hold me.
Added note: January 2020. Pat.
Recently my middle daughter Jennifer gave me a weighted blanket for Christmas, and I’ve found it much warmer than a normal blanket and I’m thinking of getting a heavier one. Usually the one blanket does fine for me, along with a quilt that my Auntie Anna made for me when I was a child but occasionally even this weighted blanket doesn’t hold me down so I’m thinking of getting a heavier one. The weighted blanket makes me feel very safe. I know I’m inside it and nobody else is. My daughter has a heavier one and loves it but I haven’t tried it yet. Right now I’m pretty happy with what I have.
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