Sunday, November 1, 2015

What Dementia Really Feels Like



"When will the madness end?" "When will things get better?" Questions we all ask. Everyone wants answers. And you will see some answers, from some "experts."

But is it what a dementia patient indeed goes through? Is what they are telling you, is that what it's like to be a patient of this horrible disease? Or are they wrong? Here is my take on this disease. From a patient's perspective.

The truth of the matter is this madness will never end. It will sometimes subside. You will see glimpses of your loved one from time to time.

But end? Not so much. This is the only disease known to mankind that there is no cure, there is no reversing it, there is no slowing the progression...and there are no survivors.

The hard truth

I have read that sometimes the posts on Memory People are hard to deal with. Let me tell you what hard to deal with is.

Taking your grandchild to school, listening to her stories, and knowing one day you won't even recognize her. You will likely not see her graduate, her wedding or her children. Dementia has a predetermined outcome for you.

It only takes a little, at first. Some of your short term memories. Then, slowly but surely, it takes all of them. Then, in time, it begins to take your long term memories as well. And in time, dementia will indeed take all of them.

All along, you do realize that this is happening. And there isn't one thing you can do about it. I think many times what will happen when I can no longer remember who I am?

And who those are around me? What will it be like? Will I be scared? More scared than I am now at times? Is that even possible?

What is Alzheimer's really like?

Many times I am asked what is it like to have Early On-Set Alzheimer's? This is what I have come up with.

There is a drug called Versed. It is used for minor surgeries, dental procedures, etc. We used it a lot in EMS work. What this drug does is erases your memory. Your short term memory, to be exact.

It has a short half-life, meaning it only lasts ten or fifteen minutes, but the effect is astounding. You give this drug to someone and they will not have any recollection of anything that has happened in the last few minutes, and with some, the last few hours. It completely erases one's memories; short term ones, anyways.

I say give this drug to someone. Then when they come to, have them in a strange building, one they have never seen. Surround them with items they have never seen. Can be anything, just things you are sure they would not recognize.

Then don't have anyone in the room with them. They are all alone for say five minutes, then one by one, people, complete strangers begin to enter this room and talk to them as if they have known them their entire lives.

Talk about things they have never heard of before. Talk as if one of them is their daughter, their spouse, and their pastor. Tell them they are so sorry for their loss. All the time the person will be wondering what is going on.

Then tell them that you have decided because of their prognosis that you would be taking food and water from them. And then, tell them that everything is going to be alright. What is about to happen will be okay.

Then leave the room. Tell them you will see them later. And you will be praying for them...then leave them alone. Entirely alone.

This wouldn't begin to show what a dementia patient goes through. But you can believe this, it would be a whole lot closer than the Virtual Dementia Tour.

Trust me. Why? Because I am a patient. Not someone who talks about dementia as if they have had it. But someone who lives with this disease day in and day out.

"When will it end?" It won't. The only time peace will come is when we take our dying breath. Isn't it strange that for me to find peace with this disease, everyone around me must then grieve?

That is dementia. And this is something we live with, as patients. Caregivers too die a little bit each day along with the patient. It is the most devastating thing you will ever encounter in your lifetime.

As a patient, or as a caregiver. It just is...

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For support for this journey of dementia, join us at Memory People, on Facebook. We'll walk this with you, each step of the way. You are not alone. https://www.facebook.com/groups/180666768616259/