Observing Social Norms with Dementia
I'm demented, but I am NOT crazy. I have lost some of my inhibitions, though...
First case in point: I had to open the gate on my upper deck to let my poodle, Julie, out into the yard below. The "normal" part of me looked all around checking for any neighbors who might be out in their yards. (I saw no one.) Then I dashed out in a long shirt and underwear to open the gate. Now, that's the "crazy" part of me.
Second case in point: I am here writing my most personal thoughts, sharing them with everyone on the web. That's not the old me. I used to be a very private person. So, I guess this dementia has brought about some very real changes in my personality. In some ways, it just may have freed me enough to become the person I have really been all along!
Since my diagnosis, I have not hesitated to tell my friends and family about my dementia. I don't see it as anything to be ashamed of. After all, it's not like I elected to have this condition. I forget that everyone I tell is hearing it for the first time and will need time to process it. My initial impression is that most don't really want to talk about it. Or it may be that they just don't know enough about it or don't know what to say. But as time goes by, and my friends and family have had time to process it, I get the feeling that I am being looked at in a different light.
Now, this may just be me being too sensitive. Sometimes I feel that my every movement or emotion is being judged and evaluated. If I forget something-which everyone over the age of thirty has the tendency to do once in a while-I get the idea that it is seen as my condition...when it might not be.
I am starting to understand that many people view dementia and Alzheimers with a very negative connotation. They are still living in the "dark ages".
I wanted to see what dementia was considered to be thirty years ago. Using a dictionary is a good indicator of what the world was like in the 1970's. So, I pulled out my only dictionary, Webster's New Collegiate Dictionary of 1979. It defines dementia as 1). A condition of deteriorated mentality; 2). MADNESS, INSANITY. My note: There was NO entry for the word Alzheimers. Wow!
In a recent article by Carol Bursack, a nursing home was described which still seems to operate at the 1979 Webster's standard of reason. The institution mentioned had two levels of care. One level was bright and more cheery and was reserved for the well-behaved patient. There was a dismal, less desirable location for the residents who were less cooperative, (though the home would never use these words, the dictionary did) the mad or insane residents. If some of today's nursing homes are still operating under these archaic ideas, how farfetched is it that the people around me might be doing so as well?
Not long gone are the days when those with dementia/Alzheimers were just locked away. But with today's new medications, dementia and Alzheimer patients can have a longer period of productivity. Granted, this really depends upon the type of disease and age of the patient. But for many of us, it IS possible to live a longer, more normal life . It is important to get this new information to everyone out there. The computer and sites such as this one are helping to teach and support. I, for one, am so very thankful for such a place to come, to learn, to share...
To my friends and family:
I know my memory is not what it should be...I know I am short tempered at times...I know that my attention span is that of a gnat when I'm tired or overwhelmed...I know that I need directions given over and over again... Higher level ideas don't always make sense to me at first. It is necessary to give me a lot more explanation...over and over again. But I eventually "get it". I KNOW all that, but I am still me. Inwardly, I have not changed.
Working with people with dementia or Alzheimers takes patience and fortitude. I understand how frustrating it must be at times. Sure, I would be better off without dementia, but it's here. It's real. And I have to live with it. I hope those I love can travel this path with me, beside me, and, sometimes, in spite of me!
I think I need to get a new dictionary!