Monday, March 23, 2015

If you Have Met One Demetia Patienet , You Have Met One Dementia Patient

"I hate my life". This is something that you would expect a 13 year old to say. Or perhaps someone who just can't get a break in life.
You wouldn't however expect to hear it from a 50, 60, 70, or even 80 year old to say. Most times, by that time in your life things hopefully are on some sort of schedule.
But you will likely hear a dementia patient speak of hating their life. Their circumstances. Anyone who doesn't understand this, just needs to talk to anyone that has been diagnosed.
Plans are changed. There are no plans. The first thing the Alzheimer Association will tell you is, make plans. Have a plan for the patients caregiving and make plans to do things you want to immediately.
What they don't say, and what they or anyone else doesn't know is, all plans go right out the window. I always say "Have a plan, then have another" because more times than not, you first plan no matter what it is will not work out.
You planned for retirement. You looked ahead to your grand-babies, watching them grow, going to their school plays, taking them on vacation, just having fun with them.
You've made plans for you are your spouse. Take those vacations you have always talked about. Be it thousands of miles away, or just taking walks with your loved ones.
We all have plans, expectations, and a road map of sorts of what we will be doing in our golden years, and even sooner for some.
Then comes the day when you see the word you are wanting to say, but can't get it to come out your mouth. Or you take a walk, where you have hundreds of times before and you can't for the life of you remember where you are.
Names cannot be remembered. Street names, or locations. You have to have everything repeated to you...not because you didn't hear what was said, but you didn't understand what was said.
The job you have done for twenty, thirty, forty, years or more is like going to something you have never done before. The simplest of tasks become daily struggles.
" I know I can tie my shoes, I have done it everyday since I was four years old, but I cannot for the life of me get the bow. How do you do that?"
Some will have two shirts on. Because they didn't realize they already put one on three minutes ago. Some will think they need to brush their teeth, walk into the bathroom and start cleaning the toilet.
Some will have that nest egg they have set aside for decades, only to see it dwindle down to little or nothing, because sooner or later you or someone you work with realizes you cannot do the job anymore.
Everything, and everyone is taking from you. Sometimes for only moments, but in the end, forever. I wish I had a dollar for every time I as my wife what day it is...and this is just before she goes to work.
It doesn't matter in the grand scheme of things what day it is for me, but everyday in my life I have known what day it is. Till now. I haven't known what day it is for so long, I just ask. It's all I can do.
Someone tells me, then tells me again in a few minutes or an hour because I don't have any recollection of even asking, once, let alone dozens of times.
With dementia you will lose everything. You will lose things that have been with you so long you take them for granted. But they will go. Sometimes for fleeting minutes, sometimes they go forever.
I long ago lost the ability to read. By that I mean that I can read, but I don't have the ability to. If I read anything that is over three paragraphs long, I have no idea what was in the first two.
Some have taken this, and said, "Just the other day he said he couldn't read, now he says he does".
People who do this have an agenda. They for lack of a better term, "lump" all of us patients together. If your Dad or Grandpa can no longer drive, how on earth is it that Rick Phelps can?
This can't be. He has claimed to had dementia for over ten years and he still drives? He can't have dementia.
I get this all the time. I can do things that some can't, so for whatever reason I either don't have dementia, or it has even been said I am faking this disease.
What kind of person even thinks that someone would want to fake the effects of dementia? How does one get to that point to where they feel that someone doesn't do or act like their loved one, so something has to be amiss.
You have all heard, "If you meet one dementia patient, you have met one dementia patient."
Meaning everyone is different on how this disease effects them, when they first got dementia, and how fast if has progressed. Some progress you would swear right before you very eyes, and some are in the same condition for years.
Why? There's your 64 thousand dollar question. Why? If someone tells you why, question them. Because I am here to tell you know scholar, no scientist, no Neurologist, no one knows why.
All I can tell you, all I can describe is what I go through today. This morning. If I tell you what this evening will be like, it's a guess. Because no patient knows what is coming, nor do they know if it will last.
The one thing I can tell you that normal is no more. There is no normal, only the "new normal".
Meaning things can change in minutes. Someone who wouldn't raise their hand to another human being, now strikes out at those they love daily. They will say words you never even know they knew.
And they will do things that is completely out of character, because they have a brain disease. They have dementia. And that you can be sure of.
Everything else is a guess. A calculated guess at times, but still a guess. I have no idea what tomorrow brings. As I sit here typing away, I have no ida what tomorrow is....or today for that matter.