My father has vascular dementia. It’s hard to know precisely when this degenerative disease started but we think it was about ten years ago after a viral infection got into his heart causing an irregularity in its beat. This led to blood pooling in one of the ventricular chambers, which then led to a clot, which then led to a trans ischemic attack. On that particular day, he reported how he had suddenly lost his balance and one side of his vision had gone fuzzy, like the noise of a TV channel without reception.
For many years after this our main focus was on making sure his heart condition was well managed. He was first diagnosed with congestive heart failure and our concern with that, and the well placed desire to manage him back into health, meant we mistook the subtle shift in his behaviour for belligerence in the face of our trying to manage his condition.
Gradually over time our own frustrations with his behaviour became more and more apparent. There came a point where we (that is my brother, mother and I) all found ourselves recognising the deep frustration we were experiencing with him. He would fuss inexorably over seemingly innocuous details; if we visited and left our car keys or wallet on the side board he would worry about who they belonged to (because he recognised that they were not his), shoes left at the front door would be moved and we would be told numerous times as to where they had been moved to and the multiple reminders to turn off the lights and TV before we came to bed, along with similarly numerous reminders of where to find the switches, become a thing of legend in our family.
I don’t know whether it would have helped to have a diagnosis earlier or not; it wouldn’t have stopped the progress but it might have made us all a little more tolerant. By the time we got the official diagnosis (which was only in the last year or so), it was far less about finally knowing what was going on and more about getting the medical profession to agree with our experience (note that no one believes they were negligent in any way).
The progression has followed a pattern of increasingly awkward behaviour that was most pernicious in its subtlety. Slightly cloying and over sentimental expressions of warmth and fondness would be directed indiscriminately, regardless of how well you knew him. It was difficult because it was only ever faintly inappropriate and not something immediately recognisable as being associated with dementia.
Those times however have past. The progress has accelerated and his memory is slowly being erased, bleaching out to white. He still recognises us and still expresses warmth and love but there is little else to directly connect with.
But when I ask to take his picture, something remarkable happens, suddenly there is a process of re-engagement that takes place, as if he is connecting again with his memory and recalling the things that were important to him. We don’t talk when I take his picture, but that makes it all the more important. Photography is after a visual medium and it is the act of looking and seeing that is communicative. And this is what happens; I look at him, he looks at me and in that moment there is cognition and communication, there is re-engagement and remembrance. Sometimes it is sad because what I see is a sense of frustration with him trying to re-engage with a memory that has been washed out and faded but mostly what I see is the determination and strong will of the man who brought me up.