Dementia Patients May Suffer from a Fear of Sleep


What I am posting has to do with what patients deal with. Not all, but some. It is what I have been experiencing for probably three years now.

I am not posting this as a woe is me thing. I want to try to explain what happens at night, and why there is nothing that can be done.

I, like many other dementia patients, suffer from night terrors. I don't call them nightmares, because they are not that. What I experience is terror; nothing less. They are not simply bad dreams. What I experience cannot be classified in any way as a dream.

I have long suffered from sleepless nights and horrendous night terrors.

One of the lyrics in the song “While I Still Can…” tells of these.

"And when I fall to sleep, the darkness and the demons steal my dreams, of how things were and how they still could be in a sweeter place.”

I still thank God that I can explain these night terrors. I think about the patients who can't. The patients who have these and cannot sleep. We talk about patients wandering aimlessly through the night, but for them, their wandering is not purposeless.

What if they are trying to get away from the vivid things they see when they are asleep? I tell you, the things I see while sleeping are unimaginable. I don't know how these things can even be in my mind.

About 90 percent of the time I cannot recall these night terrors after waking up. But there are rare occasions when I do. I am awakened by my wife, usually because I have been kicking her, hitting her, and at times even choking her during these night terrors.

I think sometimes it has to do with some of the tragic things I have seen throughout my career in Emergency Medical Services (EMS). At the time, you show up to a call and deal with each scenario as best you can. You simply do what is necessary.

This is what kept people like my wife and I in EMS: the unknown. No one call is ever the same. The idea of helping someone, and in many cases saving that person’s life, is a feeling like no other.

But some of these images are burned into your memory. I can vividly recall the accidents, suicides, and tragedies that I have been called to. All these things I have seen and much, much more have an effect on what I go through at night, I think. But you don't have to be in EMS or law enforcement to witness horrible things.

The thing is, your mind can manufacture these things. Many patients have hallucinations. Thankfully I don't have them during waking hours yet. Rather, my hallucinations come at night.

I think many other patients suffer from this as well. They simply cannot communicate it to anyone. They have long lost the ability to explain anything.

Over the years, I have heard countless explanations and solutions to help with these night terrors. People who do this have good intentions, but what they don't understand is you can't do anything to stop these.

I have tried everything from improving my sleep hygiene to over the counter and prescription sleep aid drugs to try to be able to get decent sleep. However, the issue here is it is not insomnia or a lack of sleep. It is an issue with my brain.

For whatever reason, my brain does not allow me to sleep as humans are accustomed to. We all know (or should all know) that there isn't a doctor anywhere who can help with the symptoms of this disease.

There are things that can lessen their severity, but there is not a pill made to stop these night terrors. To be able to do this, the drug would have to be able to control the brain, and that hasn't been developed yet.

Dementia patients deal with many things. Couple that with the lack of sleep, and you become mentally drained. You always have this drained feeling because you are always dealing with the symptoms of dementia. They never stop.

What I want people to know is that when your loved one gets up in the middle of the night, it may be due to something much less trivial than just being restless or just wandering. It may very well be that they are trying to get away from something terrible; something that came to them in their sleep.

I have said for years that, when a patient wanders outside their home or facility, it is because they feel threatened or scared. All they want to do is get somewhere “safe.”

Thus, they wander. They may believe they are going to their childhood home, as patients tend to refer back to their earliest memories. This is a place that they consider to be safe. But the home they are thinking of does not exist anymore.

They merely want to get away from something that is scaring them. It could be night terrors, it could be hallucinations, it could be anything. But keep in mind that these things are very real to patients. These things are their reality.

So don't just dismiss it when your loved one is up all hours of the night. What they are doing, they have no control over.

I am in the mid-stages of this disease. I can tell you that I cannot control what happens. If I could, I certainly would at any cost...

Rick Phelps became an advocate for dementia awareness after being diagnosed with Early Onset Alzheimer’s Disease in June of 2010, at the age of 57. He was forced into early retirement and created Memory People, an online dementia and memory impairment group which supports over 7,000 individuals, all touched in some way by dementia.

Visit: While I Still Can

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Rick, thank you for your caring insight. I am with you. While I don't have dementia, I have long suffered from night terrors. They are, as you say, so much worse than a nightmare. They feel real and cause a racing heart, triggering a fight-or-flight reaction. In mine, there is usually a clocked, menacing figure standing over me or my bed. My poor husband usually has to grab my arms and hold me to keep from getting hit. It is very difficult to feel safe enough to go back to sleep. Stress usually triggers them, but they are impossible to predict. I encourage anyone with this condition to research it. I can't imagine having dementia with night terrors. My thoughts go out to you!
I wish I had read this article a few years ago. I took care of my mother for several years after she began with dementia. Many times she would wake up in the middle of the night calling me, crying and afraid to go back into her bedroom. She had these terrible, terrible night dreams, or terrors for several years. She died last July at 95 1/2 yrs old. Thankfully she didn't have them the last year or two, but now I can understand a little better what she was going through and I feel bad that I wasn't better equipped to help her at the time. Her doctor would tell me it was the dementia but he never explained it in terms like Rick has.
Thanks for your article. It helps to have a different perspective.