The medical definition of dementia is “a general term for a decline in mental ability severe enough to interfere with daily life. Memory loss is an example” (http://www.alz.org/what-is-dementia.asp). However, for those of us whom dementia has affected our lives, the true definition of dementia is quite different.
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My grandfather has dementia. He has had it for most of my life, but he is also the grandparent that I am by far closest to. When I was younger he would come over for dinner almost every week. During the summer we would be swimming at his house all of the time. He came trick or treating with my sister and I every year. He was there for every birthday, Easter, Christmas, Thanksgiving, everything. He sat through my soccer games, came to town events with us, and just overall was a huge part of my life. And then he got dementia.
The true definition of dementia is not understanding why your grandfather is asking you the same questions over and over again. Why you have had the same conversation with him over and over again for the last few hours. I can remember the exact moment when I began to understand what dementia meant. It was a summer day, and my grandfather was over my house. The family had been swimming earlier, but at that point in the day I was wrapped up in my towel sitting with my grandfather on the swing we had in the backyard. In the span of about half an hour we had the same exact conversation over five times.
The true definition of dementia is the feeling of overwhelming guilt from having to place someone you love in a home. It got to a point where it was no longer safe for my grandfather to be home alone and we just were not able to give him the care he needed. The day after he moved in, my mother and I went to see him. He did not understand what was going on, and I ended up holding him in my arms as he cried because he thought that everyone was dead and gone except for the two of us.
The true definition of dementia is the utter heartbreak of walking up to your grandfather and saying hello, only for him to not know who you are. The first time I realized that my grandfather no longer knew my name, I swear that my heart stopped for a moment. That pain is indescribable.
The true definition of dementia is the guilt you feel that visiting is hard. When someone you love so much no longer knows who you are, is no longer able to speak, or do so many of the things that make them them, it becomes hard to want to visit. And when you do visit, it tends to not be long, because the heartbreak of seeing someone who used to be so strong, so full of life and laughter not speaking and just sitting there is too much to handle.
The true definition of dementia is the joy you feel when you get a hug, or even just one word, or that little spark of recognition behind their eyes. It is that joy of knowing that somewhere the person that they used to be is still there.