By Rick Phelps
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...