Child Dementia.

http://www.abc.net.au/rn/talks/8.30/helthrpt/stories/s37727.htm


"..As time goes on and the brain begins to fail more and more seriously, it's possible for a child to be alive, but no longer to relate. And this is a very sad part, one of the tragedies of dementia is that you lose the child emotionally, and in your relationship with them, before you actually lose them physically. There are the four things that I think parents have to face. The first thing is they have to face that pervasive uncertainty, all the things that are so hard to understand, to know, because we know so little about it, even though we've known for a long time many of these different diseases.

The second thing is the disintegration of their humanity. When you've got a young child who you've come to love and know, and their personality, and then you watch that personality being dismantled, piece by piece, that disintegration process, and one parent said to me very clearly, she said, 'I feel like I'm falling apart, piece by piece.'

The third thing is that over all of this is the prolonged sense of the Damocles Sword hanging over the child. That is, everyone knows at some stage they're going to lose this child.

And the fourth thing is that many of these conditions are genetic. And so you may have more than one child affected. So you've gone through all this tragedy, and often you've already had your children by the time the first one's diagnosed, only to know, 'I've got to face this again.' From the moment that there is some certainty, many of the parents begin to prepare for the loss within. They have to be able to play with their child, love their child, they have to be able to nurture their child's education, knowing that within a period of time, that education will probably be completely lost..."