Perception of pain disappearing?

[LewyDementiaCarer]

We are carers for a late stage lewy dementia patient approaching end of life care. She is bedridden, double incontinent, often unable to balance herself even sitting up but still eating (mostly soft foods) and drinking thickened liquids etc.
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Most recently she has started not wanting her painkiller (given in thickened liquid form due to swallowing issues), and she is also reporting no pain at all when asked. This is unusual as she has a bad hip and knee which normally have been hurting her to move around, but now she moves her legs & body when being changed or cleaned without any facial expression or body language indicating pain, and when I ask her if she is any discomfort etc. she tells us no, she says she feels good & comfortable.

I'm struggling to find any literature on this experience in LBD patients and just wondered if anyone else has experienced this?

 

[LewyDementiaCarer]

I should add this seems to have been coming on slowly over a few weeks, fluctuating at moments, but decreased dramatically, and during the last few days, she has refused any pain medication and now seems to be in no pain whatsoever.

 

[Banjomansmate]

A couple of months ago my neighbour managed to get a gash right down the front of her leg, from knee to ankle and I couldn’t get her to sit still while waiting for the ambulance to come. It looked awful and must have been really painful to any ordinary person but it didn’t seem to bother her at all even though she was leaving blood everywhere! When she was in hospital afterwards they were offering her painkillers but she refused them. When her daughter asked about having any pain she said “No”.
I decided that dementia must have disabled her pain sensors, unlike my friend with LBD who started shouting if you even touched him towards the end of his life.

 

[LewyDementiaCarer]

A couple of months ago my neighbour managed to get a gash right down the front of her leg, from knee to ankle and I couldn’t get her to sit still while waiting for the ambulance to come. It looked awful and must have been really painful to any ordinary person but it didn’t seem to bother her at all even though she was leaving blood everywhere! When she was in hospital afterwards they were offering her painkillers but she refused them. When her daughter asked about having any pain she said “No”.
I decided that dementia must have disabled her pain sensors, unlike my friend with LBD who started shouting if you even touched him towards the end of his life.

Thank you for answering. That's really interesting, I guess with this disease every person is different, depending how the brain breaks down. I suppose it's entirely possible that the pain receptors can start to shut down, whilst leaving other sensory input somewhat intact.

 

[nitram]

In the later stages of LDB my wife appeared immune to pain, she had an infected toe, the nail was ablated without any pain relief.
However diamorphine was included in the syringe driver cocktail for her last week.

 

[LewyDementiaCarer]

In the later stages of LDB my wife appeared immune to pain, she had an infected toe, the nail was ablated without any pain relief.
However diamorphine was included in the syringe driver cocktail for her last week.

Thanks for sharing your wife's experience with this. I wonder how common it is in late-end stages, I suppose it's hard to know when it's likely most/many would be on high dose painkillers anyway by this stage (as ours was, before she decided she didn't want to take them).