Alzheimer's Reading Room
He writes that my article in part moved him to produce these words. Perhaps he is referring to the article I posted yesterday, Alzheimer's Off the Top of My Head -- Get Your Head Out of the Sand. I am not certain.
I'm sure many of you will immediately recognize Richard's name.
By Richard Taylor, June 4, 2011 (unedited)
Janet Adkins (the first person Dr. Jack Kevorkian ("assisted") really believed that everyone was going to die who had Alzheimer's disease. And not just die, like everyone dies. It would be painful, dehumanizing, something no one should have to live through. It was a death, she believed that should be avoided, if it could be avoided.
She knew it was a fatal disease. So why, she reasoned in her last letter, bother to suffer the prelude when the movements were so awful to live through, and it always ended with pain, suffering, loss of every ounce/inch of humanity and a whimper?
But then again, everyone is going to die who does not have Alzheimer's disease. Life is a fatal disease/chronic disability/condition!
Is there unbearable pain attached/guaranteed by the diagnosis? Not that anyone has reported, except for others who do not have it and are in psychic pain watching themselves say good-bye to some who is in their minds slipping away. Except for others whose focus groups have told them if you want to raise money for cure research scare the hell into the donors, not out of them, and then all but promise a pill to assure them they won't go to or through hell - at least not because of their Alzheimer’s disease, because their support and donation now will create a world without Alzheimer’s disease - soon! "We are so close to pharmacologically bringing a part of heaven onto this earth." they have been telling us for the past twenty years.
There is pain in the hearts and minds of people living with Alzheimer’s disease, but it comes first from without, not from within. There is fear within that comes first from without. There is pain in the hearts and minds of care partners. There is despair about the future. And whence cometh all this pain and suffering? From the disease? Hell NO!
It all starts, not from birth, not from genes, not from between our own ears. It comes first from listening to and watching TV commercials, press releases, relatives, fund raising campaigns, second and third and reports about what others think/know what is for sure like to live with Alzheimer’s disease.
One organization preaches that folks lose their souls when they are in the later stages of this form of dementia. Have these prophets returned from heaven/hell with a firsthand report? How do we know the condition of anyone's soul? Apparently, some of those who clearly should know better and are interested in raising funds for research for a cure know for sure. At least sure enough to make a video and show it to lots of folks claiming second hand knowledge of this loss of soul.
A doctor friend of mine just wrote "it's time to take off the gloves" referring to his own self imposed restraint when respond to the defense of mind/mood altering/smothering drugs given to so many folks living with the symptoms of dementia.
I believe it is time to take off the gloves when addressing the Alzheimer’s myth builders certain claims of a living hell inevitably engulfing those living with the syndrome of Alzheimer's disease.
We have all been slapped around to long by the myths and stigmas continually promoted by those who should know better, whose personal interests are well served by the consequences of myth making. And they are hitting harder, more often, and damn it with more success. It's time to tell the other Janet's, living with the diagnosis, that life, purposefulness, love, and all the other deeply felt and yearned for human needs are just as alive in the last stages of life/Alzheimer’s/dementia as they were the moment before they heard the words "you have dementia, probably of the Alzheimer's type" intoned by someone in a white coat who increasingly doesn't believe what s/he just told you. At least they don't believe all the myths, stigmas, advice, and pills that come with those words.
I cannot read the minds, hearts, souls of the folks who perpetuate the myths that first caused Janet to consider suicide as a rational answer to the guaranteed pain and suffering that was guaranteed to be her life living with Alzheimer's disease.
I just don't understand these fear mongers. Is any cause worth the suffering they are causing/promoting/tearfully announcing? Even if we all believed Alzheimer's is a disability that can be cured/appreciably slowed down, is it right to knowingly create pain and suffering in some, so some others will not have to experience it?
Damn it. Let's all stand up and speak out. Let's name their names, let's stop donating, let's stop swallowing whatever they say is best for "us", let's replace them. Let's show the other Janet's in the world there is a rational, meaningful alternative to ending your life when you receive a diagnosis of probably Alzheimer's. It is living your life. Surrounding yourself with an informed, enabling network of care partners. It is believing in yourself. It is ignoring the sentence and conditions” others (who for their own reasons) have assigned defined to you - "a death sentence." A soul-less, suffering filled existence leading up to not one but two deaths!
Say hello to the "Janets" in your life. Say hello to yourself. Stand up to the blizzard of claimed breakthroughs, press releases, promises of a better life through chemistry. Speak out! If we all don’t look who is speaking for us? Look what they are saying? Look at the consequences of their labels, myths, stigmas on people living with the symptoms of dementia and their care partners.
Stand Up! Speak Out! Take off your gloves and let the naked truth speak for itself.
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