Friday, May 1, 2015

I Am Not Terminal, I Have a Terminal Disease

I am not terminal. I have a terminal disease. Did you ever think about that. To say someone is terminal, that is essentially saying they will be dead in six months or less. 
Dementia patients can live for years. Decades even. So, we are not terminal. 
We have a terminal disease. To which there is no known cure for dementia and it is fatal. Meaning you will die from some effect of dementia. 
May be breathing difficulties, one could choke to death, they could simply go into a coma because of this brain disease or a whole host of things that patients do indeed die from, but are stemmed from dementia.
Not until a few years ago did they even list Alzheimers or other forms of dementia as the reason for death. 
This is why most times you will not get your loved one into a hospice program without them meeting a certain criteria. One of them is being terminal, not having a terminal disease. 
Like I said, I could live another ten years with dementia. I doubt that will, but there have been cases, many cases where patients live for decades. 
So, remember, your loved one is not terminal. They have a terminal disease, that will surely kill them. But just not in the time that classifies them to be terminal. 
I doubt that anyones doctor ever took the time to tell you the differences in a terminal disease, and a terminal patient. And that is where the problem lies. 
Lack of Awareness and Knowledge of dementia of any kind. You are given a diagnosis and shuffled out the door in a matter of minutes. 
No understanding about what just happened, what is going to happen, who to turn to, and where to go to get help.
It took my Neuro seventeen minutes to diagnose me, from the time my wife signed me in, to the time we were at the elevator leaving. 
Neither of us knew what to do next. And that too is problem. I think here at Memory People™, we have taken some of the unknown out of the equation. 
Those who find us there either through my book, "While I Still Can..." or any other source will tell you that it is like a weight has been lifted off their shoulders.
We don't cure a thing. We don't even talk about cures. We deal with the here and now.
Our goal is to get you the caregiver or patient through today. Then, we will do it all over again tomorrow. 
If you haven't read my book yet, here is where it can be purchased and it can be downloaded immediately for like $3 
When you get the e-book or kindle addition, you get dozens of hyper links that you simply can click on to get more valuable information about dementia. 
If you haven't read it, please do so. It will be the best $3 you ever spend. You will laugh, you will cry, but most of all you will gain Knowledge. 
And Knowledge is power when it comes to dementia. I have included a link to Amazon where my book can be purchased. 
Again, it is the very best $3 you will ever spend. It can be gifted as well. In other words you can purchase one for yourself and then perhaps send one to family members or friends. 
I truly think my book should be mandatory reading for health care workers getting into the dementia field. Simply because it was written by a patient, not someone who studied this disease, or gives you their opinion. 
But by an actual patient. I take the reader from before my diagnosis and how working as an EMT was effected, and how living with this disease has changed our lives, not just mine but everyone around me. 
Here is the link, I hope you enjoy the book....