It saddens me to say that just saying the word DEMENTIA creates a self-limiting prophesy. That may be an apparent truth…but it is not the whole story. Unfortunately, most people do not understand what dementia is. People do not know that dementia has many different faces. This saddens me because I was diagnosed almost a year ago with dementia and since then I have had many eye opening experiences.
When I found out that what I was experiencing was dementia, I immediately went into a tailspin for a month. I was one of the masses who saw dementia as a death sentence-not necessarily a physical death, but a mental death. At the end of my downward spiral-and after much research on the subject-I knew that I had a choice to make. I could take the diagnosis and give up OR I could use each day to live the fullest physical and mental life I could. I decided that I wanted to make a difference with my life. I wanted to show society what the face of dementia could be. (Thankfully, OurAlzheimers.com has given me the voice I needed to meet the masses via internet.) However, I have a long way to go to get my message across…
Recently, I attended a funeral of the teenage daughter of a friend I had taught with for many years. Sitting in the church before the service started, the entire school faculty began to stream in and sit in the area set aside for us. While sitting there, greetings were made…I hadn’t seen many of these people for a year or more. It was an interesting experience. Those people I had seen or spoken with on a more regular basis gave warm reception…but those I hadn’t seen in the past year or so were less warm…I felt them looking at me almost in fear as though they weren’t sure what to say or do…I felt “contagious”, as though if they got too close, they might catch dementia, too.
An “old” teammate of many years looked at me in pity and asked if I was still driving and then went on to say that maybe I should consider giving up my license I understand that these folks had not seen me in some time and probably have heard “stories” about me from those who have seen me. I also understand that each of these people bring with them their own background of experiences with and knowledge about dementia and Alzheimer’s disease. I also understand that I cannot hold their attitudes about dementia against them.
I can only be me. With dementia. I am highly functioning at this point due to having started out with a high IQ. And, with vascular dementia, I could function this way for 10 years to come. No one knows what the future holds for me and others like me. But it is not beyond the scope of reality that we can be productive citizens within our society. We may not be able to hold down a full-time job. In my case, I can no longer teach. However, there is a whole world out there which needs help…there are so many opportunities to be found…
With all this in mind, I have come to a decision. I will no longer blurt out that I have dementia. I will no longer reveal the truth to people I meet. I have found that once I do that, my future in their eyes is diminished. Their level of expectations lowers immediately…and so my opportunity for challenging and creative opportunities is cut. My Pollyanna-ish attitude about my dementia is not working. I am not ashamed of having dementia. It just doesn’t work for me to talk about it if I want to be assured of living the best life I can.
Except for my lack of short term memory, I appear pretty normal. What am I doing to make myself appear so normal? I take medications for early to moderate dementia. These have been helpful to me. I also exercise both my mind and body regularly. This works for me. I also have a deep faith in God. This sustains me through everything. I am keeping my blood pressure in check and working hard to bring down my blood sugar levels. My husband and I have changed our lifestyle to include fewer carbohydrates in our diet. I am looking at (and for) the joy in life… If I have ten years or more at this level of dementia, I have ten more years than many people…Who knows? Scientists may find better medications to extend that prognosis.
With all this in mind, why would I limit myself and my opportunities by confessing to people I have dementia?