I told someone the other day that I don't experience pain with dementia. Yet, that is.
After I said that, I thought to myself, that was a dumb thing to say. Sometimes, actually more often than not I come out with something that I wish I could take back, but rarely remember it till its too late.
There is pain with dementia. The pain is very evident. All one has to do is look into the eyes of their loved and and you will see the pain.
The desperation. The confusion. The stress. The fear. The loneliness. And yes, the pain.
This disease causes great pain, everyday, all the time. It is however the type of pain that is rarely discussed. To do so, many families and patients would have to acknowledge there is even a problem.
Denial is a great pain. We want to go on and act as if nothing is wrong. I do this all the time, although I am not in denial, I still try my best to engage in things like conversations when I can never follow the subject.
Everyday I wonder what I have I said to someone or did that caused them pain? did I inadvertently say something to upset a caregiver, a patient, or someone who I hold dear to me?
Dementia causes me to not be able to answer this question. The loss of memory I have just won't allow me to go back and think, "Should I have said something different, should I have not come across so authoritative?"
So if you are a family member or a caregiver know this, your loved one is in pain. Not the physical pain perhaps we are accustomed to, but the pain of knowing that they are losing their minds, slowly but surly and there isn't a thing they are anyone else can do about it.
I can't explain the pain that is caused by this disease. There isn't a word in the english language that I know of that can.
Think of your worst day. The day you just knew you would not get through no matter what anyone did or said to help you.
That is our day. That is today. And it will be worse tomorrow. There is pain with this disease. It's written all over our faces...