No one openly talks about Dementia! It is like your spouse is pregnant out of wedlock!! Or like they had an affair!! Dementia is a medical condition that people suffer from through no fault of their own!! We nee to get "Dementia" out in the open for our own good.
Now, some of the blame belongs with those of us who have "Dementia"! We deny it, we cover it up, our spouses hid our "Dementia", they do the bills, speak for us, make excuses for us!! Well, the time for hiding DEMENTIA in the closet is over!!
We must get Dementia in the open. We must discuss Dementia with family, friends, neighbors, Church members, Doctors, and anyone else who will listen. And as a person with Lewy Body Dementia, I plead with all of you to be honest about your symptoms. I plead with your spouses to be open with us and our families about our issues. The more we openly, honestly, discuss Dementia, the better our care options will be.
I live in a Continuing Care Community called Azalea Trace in Pensacola. Today, we had a presentation about the Wellness Program that ACTS has in all of their communities. The Wellness Program includes Dietary issues, physical wellness, and Spiritual Health. All Very, Very, Important to our health and well being.
But, they neglect to even mention Dementia. I recommend a program that introduced a Dementia Care Continuum that started when an individual is first exhibiting Dementia symptoms. A program that addressed the progression of the disease, familiarized the Dementia Patient and their Spouse on the care options available. As the Dementia progresses, visits to the Dementia Care facility in the ACTS Community would take away the stigma of these places for the Dementia patient, thus aliening the fear the patient may have. Meeting the care givers so they become friends will help east the pending transition.
Presently, we move the Dementia patient into a sterile, strange, hostile, environment when they are at their weakest, most confused time. One reason for this is we deny we have Dementia until we are so bad, denial is futile! Dementia patients need to be open, honest, and comfortable, discussing their disease.
I remember when President Ford's Wife, Betty, had Breast Cancer and openly discussed her disease and her treatment. That openness paved the way for millions of Americans to seek treatment, early!! We need the same opens with Dementia and Communities like Azalea Trace are the place for this opens to begin. But, even a great Community like Azalea Trace and a great organization like ACTS cannot effect change until us, the Dementia patients, openly discuss our condition and seek treatment early instead of later!
I challenge Dementia patients, Spouses, and Families to encourage each other to come out of the closet and openly discuss this disease. This opens will facilitate better treatment and better care for our loved ones. The ball is in OUR court!
P.S. I have been open about my disease from the beginning. I have resisted the nay sayers and the stigma of having Dementia. I have made decisions that, while difficult, will give me control of my future and relieve my wife of having to make decisions when I am so bad that no one will take me! I retired because I could no longer do my job, even though my employer was ready to make extraordinary conditions to keep me employed. While I appreciated their loyalty and respect, I knew it was not fair to my fellow employees fro me to get special consideration. I have always lead by example. I wrote this post to ask the Dementia Community to join me in bringing our disease, be it Alzheimer's, Lewy Body Dementia, Frontal Lobe Dementia, or other Dementia, to the forefront! It is to our benefit to do so and we hurt our future care if we fail.