jmgoyder

wings and things

Hallucinations are not just visual

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.

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Nine

Tomorrow is the 9th of December and I have decided that, in order to combat the rut I am in, I will do everything in nines – 9 household jobs, 9 photos for Anthony, a 9×9 walk up and down our long driveway to begin getting fit again, 9 emails to those I’ve lost touch with, 9 blogposts (that’s a joke), 9 hugs for Ants when I see him in the morning, 9 hugs for Ming if he tolerates it, and 9 new thoughts/resolutions.

Lately I have been reading about autism and Asperger’s, not for any reason except that I happened to borrow three books about this syndrome and I became enthralled. No, I do not have autism, however I can definitely relate to the number obsession that some people suffer/embrace, and some of what I have read makes sense of what I was like as a child.

I always had to count my steps and couldn’t bear odd numbers, so walking to school I would always make sure that, between each bit of footpath, just before the crack, I would do either 2 or 4 steps, never 3 or 5. And, from my bedroom door to my bed, I always had to make sure that I took 6 or 8 steps, never 5 or 7.  If I made a mistake, I would get out of bed and retrace my steps to make it right.

This kind of thing (which I kept secret as a child) is a form of OCD – obsessive, compulsive disorder – and I happened upon an article recently that described my childhood behaviour in those terms. I found this extremely comforting and began to read more about OCD. It was a bit of a shock to find that some of my other weird childhood thoughts and habits were actually quite common and, in fact, quite normal in the OCD context.

Was this obsession with even numbers an attempt to make sense of a world that I found so uneven? I don’t know. I was adored by my parents and I adored them too, but I was plagued by uncertainty, anxiety and the very definite sensation that I was abnormal, which lasted well into my teenage years.

And now? The challenge of tomorrow’s 9 frightens me but compels me to get over this uneven number fear. I have to do it. I will do it, and my score will be 9/10. I’ll make sure of that!

Nine.

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