Nil by Mouth

Those of your that follow me will know I've been documenting with my father's dementia and the rapid path of deterioration he has taken over the last few years. This activity is part art, part therapy (so I guess that makes it ‘art therapy’) but is entirely about engaging with his condition in a bid to maintain my connection with him. His form of dementia – vascular dementia – is the result of reduced cardio vascular output which subsequently causes the deterioration of brain mass and therefore cognitive function. It was an odd experience to witness its onset, not least because of how early in his life it seemed to start. Indeed, such was the premature nature of his condition that for a long time the subtle shift in his behaviour was largely interpreted as something other than dementia. For a long time it didn’t even register that there was clinical problem; we just regarded him as having become a little OCD here, a little emotionally effusive there and just sometimes perhaps a tad inappropriate in genteel company.


This shift gradually become more obvious. The emotional effusiveness turned into cloying sentimentality and the slightly OCD nature of whether the car keys were mine or some other previously unidentified individual who might be in the house turned into frustrating stubbornness as he tried to rationalise who they might belong to.

His condition descended like a fog. Forward visibility slowly deteriorated but at a rate that simply caused ambiguity rather than certainty. For a long time we all wondered whether we were perhaps not over reacting a little. That ambiguity seems almost quaint now. There was a point when the fog was so thick that it was no longer possible to draw any other conclusion even if that point for us as family was some months before a clinical diagnosis.


Over the last two years the degree of cognitive engagement has rapidly dropped off but there has always been an emotional connection. Hugs have always been reciprocated and I’ve commented before that he is most engaged and alert whenever I point a camera at him. At these times the lens seems to cut like a knife through the fog of his dementia and we communicate again. His gaze is fixed and determined and his eyes sparkle.

I've often thought about whether documenting this period in his life was fair on him. He lacks the capacity for consent to publish these images so there is a moral question that needs to be asked and, with respect to my fellow photographers, we aren’t the most objective people to ask this question of. I can publish the photographs on Instagram and Flickr and receive nothing but approval and commendation, but ask my brother what he thinks and you’ll get a very different answer. Not unequivocally condemning, but certainly troubled.


On Monday he was taken into hospital and were told he had a less than 50/50 chance of making it through the night. I raced up to see him on Tuesday and went directly to the hospital. He had indeed pulled through the night but was (and is still) very ill. Of course, I had my camera and of course I had been thinking a lot about whether to document this point or not. The greatest challenge is the sense that I might be taking and posting these photographs precisely because I know they will be powerful and compelling and arguably the base of our motivation to act in any capacity is the desire to have that action recognised. It might not be that this is craven, attention seeking behaviour, but there is still a selfish component to the action.  

I thought these might be the last photograph I would take of him and thought particularly hard about whether I would or wouldn’t share them. As it turns out, by good fortune they are not, but that doesn't change my reason for sharing it. If they had been, I would still be posting it here.


My photographing him has always been about forcing myself to engage with him; with the man in front of the lens, forcing me to look and confront what is happening. I still think that is terribly important, at least for me if perhaps not for anyone else. At some point, one of the pictures I take will be the last one. I will post that one also when it happens. Life ends eventually but while we live, we have to engage it with every fibre of our being.