Today I read this description of Alzheimer's,
"The disease consists of equal measures of despair and terror, with little room for levity."I found this tremendously disconcerting.
Am I confused? I have my own very strong beliefs about Alzheimer's.
For one, I believe Alzheimer's patients, the deeply forgetful, are capable of more than we can imagine with our brains.
I believe that we, the caregivers, are constrained by our brains. Odd, or perhaps ironic.
By ironic I mean what is actually happening in the heads of a person living with Alzheimer's or a related dementia. I believe that what is going on in there is contrary to what we expect. Contrary to what we believe, contrary to what we imagine.
Let's face it, we all start, or at least most of us, "brainwashed".
We can't help but believe the stigma attached to Alzheimer's. We can't help ourselves, not at the beginning anyway.
The people that receive the most money, the greatest amount of donations for Alzheimer's, repeatedly tell us "their are no survivors". Does this mean if you die from something other than Alzheimer's - you survived?
I wonder to myself. Am I obtuse, or are they obtuse? By obtuse I mean - emotionally insensitive.
This is an actual advertisement.
That ad must be about 30 years old. Looks old. We must have come a long way since then. Right?
In 2011, in a Alzheimer's Association report entitled Generation Alzheimer's the big boss said,
"Alzheimer's is a tragic epidemic that has no survivors. Not a single one,"
Now I fully understand that those words were picked by marketing people and designed to raise as much money as possible. No one denies this by the way. They freely admit it.
What disturbs me is that real people in the Alzheimer's community thinks its okay to say those words.
Words have meaning. Those words objectify every person living with Alzheimer's. Those words not only turn Alzheimer's patients into objects, those words vilify them. Turn them into villains.
Meanwhile in other societies outside the United States in places like Ireland and the UK they are endeavoring to create millions of Dementia Friends, and a Dementia Friendly society. Many people here in the U.S. think this is impossible. They will be proven wrong soon enough.
I believe that dementia patients are special. Special and mostly misunderstood.
First and foremost, the deeply forgetful are made of flesh and blood, just like you and me. They are full of memories, just like you and me. They do think, and they continue to feel. Ever seen a dementia patient cry, or tremble. I have.
I believe that Alzheimer's caregivers are special. We are forced by circumstances to dig deep down inside to our own spirituality. We are forced by circumstance to rediscover our own spirit within.
Forced or not, we rediscover ourselves and our own human fragility. Once we rediscovered this fragility we come to understand the fragility of the dementia patient.
It all boils down to rediscovering how to live life one day at a time. This is what we do, and we do it well.
We survive dementia.
Somebody has to stand up and defend the deeply forgetful. I'm starting to feel like I am one of the One's that is going to need to stand up.
For those who believe that dysfunctional rhetoric and mean spirited words are the way to solve the problems we confront I say, it won't work and it is coming to an end.
We are ready to come out of the grass.
The Dementia Friends are coming. New friends are being born each day. We will hold hands and make it happen because those we trusted to make it happen can't and won't.
It is going to be an interesting year.
Advice and Insight into Alzheimer's and Dementia
Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. The ARR knowledge base contains more than 3,811 articles with more than 306,100 links on the Internet. Bob lives in Delray Beach, FL.
Original content Bob DeMarco, the Alzheimer's Reading Room