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 
Julie, this is a great post. I share your interest in Dr. Sadks and have reas many of his books. I also found that my mother suffered hallucinations especially durinf the last year of her life, but also before. She insisted dad was in her hospital room when he was not. She was angry when she called out to her and he didn’t respond because he really wasn’t there. She saw pills in the bed and glasses of water in the bed and they were not there either. This would be a very helpfup post for thos still caring for their family members with dementia. I am so very impressed about how you have rearrqnged your life to spend so much time with Anthony and attempt to have a more normalized relationship. My hat’s off to you!
I wonder if there are pamphlets out there about hallucinations; it doesn’t seem to be common knowledge.
A lovely tribute to Oliver Sacks 🙂
I learn so much from you Julie, especially about love.
This is an incredibly timely read given my post from today.
Serendipity!
I think it is a tribute. I wanted to do a tribute to him too last week when he died but I didn’t manage to. He was such a generous, caring man. I once wrote him asking him to assess a description of a temporal lobe seizure I had tried to convey and he sat down and wrote a response from his typewriter, on his stationery with a palm tree logo at the top. I have it somewhere. I think I should get all his books together, find the letter and tuck it inside The Man Who Mistook His Wife For A Hat.
How wonderful that he wrote to you!
Yes that was his generosity and probably his fascination with the endless variety of clinical detail (I used to have musicogenic temp. lobe seizures after a skull fracture).
My apologies, not wanting to be disrespectful, but I couldn’t help but get an image of Anthony being hoisted, brandishing a sword and wearing a pirate’s hat.I forgot about the audible and tactile hallucinations as well as the visual. Change times are sometimes unpleasant for both staff and patient, possibly bringing on unpleasant memories from the past, too. It pays to talk and tell them what is going to happen but not always effective.Heard an interview with Oliver Sacks yesterday on CBC-fascinating man! He will be missed.I appreciate your descriptions of the disease especially in such a personal way-I do find it fascinating.
LOLOLOL (re your image!)
Whatever it is, what you write is always interesting even if sad.
Much love my friend
I like your matter-of-fact reply to Anthony. It must be very scary to think things like that are happening. My mom had many different types of hallucinations because of her illness, and obviously they were very real to her. I think I’ll do some reading up on Oliver Sacks.
I think it is a tribute, because he was one who gave insight into dementia, even before you knew you would need it… Diane
Oliver Sachs also wrote ‘The Man Who Mistook His Wife for a Hat’ and it was about certain neurological conditions. Fascinating. Thanks for this post
The first time I was in someone’s home who was having auditory hallucinations, I didn’t know what to do. He indicated he didn’t want to bother them, and asked me if I could hear them talking. I said no, could he show me where they were. He took me down the hallway and nodded his head towards a bedroom as we walked by. He didn’t stop though, he was trying to be discreet. So I walked by like he did and only glanced in, and followed him in to the large living room. He was speaking softly, so I did as well. I didn’t want to upset him. To tell you the truth, his hallucination was so real to him that I was surprised that people weren’t actually sitting on the twin beds, facing one another talking. It was fascinating. Interesting. I’ve had many incidents like this now. I’m glad I had the ability to understand that no matter what, this is real to them/him.
Thanks for telling me/us this story. It can be so uncanny.
It’s happened numerous times since. Uncanny is a good word.
i loved his work and stories too. i was fascinated by how the brain worked and continue to be.
The hallucinations sound alarming for the patient and the carers alike.
We are lucky in that most of Anthony’s hallucinations are not scary now.
I think some hallucinations must be frightening for the person, others like thinking there is a baby on their lap might me a good kind as babies are usually settling for a person
Yes, that baby on his lap is always comforting.