Pain - Real or Imagined???

[Basta]

Hi,
My mother (87) has vascular dementia after a stroke 7 years ago and, since we lost our Dad three years ago, me and my brother are caring for Mum at home, my brother has moved in and one or other of us is there all the time.

We have been coping reasonably well and mums dementia has been fairly stable until she was admitted to hospital about 3 weeks ago with a chest infection, she was in for about a week which as terrible as she didn't know where she was or what was happening. Before this she was pretty good mobility wise and also generally fairly well all round but since she has come home there has been a sudden decline.

She is now struggling with mobility and is constantly complaining about pain in her back, tummy, arm, etc, we have had the doctor out a couple of times in the last week and have been told that its probably just a bad back and that we need to keep an eye on bowel movements to ensure the pain killers she is on (codeine) aren't causing tummy pain / constipation, which we are doing our best to stay on top of, but she is crying out in pain sometimes in the mornings and also constantly complaining about pain throughout the day but when we ask where it hurts or how it feels she struggles to explain / communicate it very well.

She will also, every now and then, get up and move about (with her frame!) without the usual wincing and groaning and seems to be in no / very little pain!

I am struggling to understand this and whilst I don't want to seem uncaring I am beginning to wonder if it is partly imagined, is this a "thing" with the condition or should we always assume that the cries / groans are completely real??

Any help / advice / experience of this would be great!!!

 

[Jaded'n'faded]

Could well be constipation. Do keep an eye on things (lovely, I know!) and make sure she is well hydrated.

But yes, it is 'a thing' which complicates matters. My mother would tell me she was in pain and if I didn't react with enough sympathy, she would escalate it until I did. There was one time she told me she had a terrible rash up her arm, which she showed me. Freckles! I explained and showed her the ones on my arms but I should have just agreed how terrible it was. Next it was that the rash went up both arms and over her head. (??) Then she said it had been all down her legs last week so they had to cut one off but they'd put it back on now. Apparently this happened to a lot of people there (care home) because it was catching and they were all getting it done...

Looking back, this is funny (mum died 4 years ago) but it wasn't at the time as no matter what they say, you always wonder if they really are in pain and just can't express it in a way that makes sense. All you can do is what you're doing - get her checked out and keep an eye on things.

 

[Jale]

Mum has vascular dementia too and in a nursing home, and certainly over the last 12 months (may be longer) she sometimes shows signs of pain - wincing and saying ouch over and over. Her hands do cramp up and go virtually into talon like and when they are like that she will not let anyone touch them, she cannot hold a cup or move it and she will lay with the hand held up, but then what seems like minutes later she will be scratching her head or pulling at the bedclothes with the same hand. I think there is some physical pain there but like you we can't get mum to tell us where the pain is or how bad it is.

I know that any infection in a person with dementia has an awful effect on them, but I'm not sure there is a lot you can do, other than as Jaded'n'faded has said and keep an eye on things. Sorry can't be more helpful

 

[canary]

I think that in later stages ordinary signals from the body are misinterpreted as pain. My MIL constantly complained of pain that shifted around and although she was investigated, no-one ever found a reason for it.

I think you have to check and not just assume that it is "phantom pain", but if there is no reason it may just be the dementia.

 

[Knitandpurl]

I think that in later stages ordinary signals from the body are misinterpreted as pain. My MIL constantly complained of pain that shifted around and although she was investigated, no-one ever found a reason for it.

I think you have to check and not just assume that it is "phantom pain", but if there is no reason it may just be the dementia.

I agree. My OH will tell me he has a pain someplace and I won’t be able to find anything but then later notice a bump, or wound someplace else which he seems oblivious to, it’s like his brain cannot tell him where the ‘pain’ is.