I’ve been reading some of Oliver Sacks’ work over the last few days. This wonderful, 82-year-old neurologist – most famous for his book Awakenings which was made into a movie – died last week.
When I was writing my PhD thesis on Alzheimer’s Disease, I referred to Sacks’ work often. I particularly liked the way he melded science with anecdote.
I found it particularly interesting today to read about people who have other-than-visual hallucinations. As it is many years since Anthony began hallucinating, I’ve developed a bit of a fascination I guess.
The fact that people with dementia, Parkinson’s disease and other various neurological disorders, often experience various sensory hallucinations, is well-documented in the academic world but perhaps not widely understood by the people on the ground, so to speak – the carers.
It seems important to translate academic findings into do-able care strategies but that doesn’t seem to happen enough in my opinion. Perhaps I’m in a good position to write about dementia better than I wrote about it before because I’m not studying it now; I’m experiencing its nuances via my husband, Anthony.
And I know it sounds weird but I do find Anthony’s condition, especially the hallucinatory stuff, fascinating. Here are some examples:
Visual hallucinations: baby on his lap; calves outside the window; Ming in the room (when he isn’t); children on the floor; dogs on bed; machinery in the room etc.
Auditory hallucinations: replies to conversations that aren’t happening; often speaks to deceased members of his family as if in response to a question.
Tactile hallucinations: feels there is a baby/child on his lap, or a puppy; will mistake his own hand for mine and kiss it.
A couple of years ago Anthony mistook the hoist that the carers were using to lift him from chair to bed as a pirate ship. I remember vividly the evening phone-calls from the nursing home from carers wanting me to calm him down (in retrospect this only happened a few time). This was terribly distressing of course but soon faded off as Anthony got used to the hoist. But sometimes he still says things that indicate to me that bed-time is traumatic.
Just the other day:
Anthony: They attacked me and took all my clothes off and fiddled around with my genitals.
Me: Ants, they were the nurses putting you to bed! Try to always remember that, please.
I wonder sometimes if the most feisty of dementia sufferers ‘see’ the carers as scary characters from pirate ships, as previous enemies, as terrifying strangers. The latter, I think, is probably the best way of describing what a person with advanced dementia might feel towards a caring nurse at bed-time – I don’t know.
Anyway, this was supposed to be a tribute to Oliver Sacks.
Maybe it is.
jmgoyder 