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When we go to the pcp or pain management doctor and they ask her how much pain she is in, she always says not that much really. So I try to explain how bad it is and I see it constantly they say that if she says she is not in pain then she is fine. I know that she is minimizing the pain for the doctors. I just wonder does anyone elses mom or dad do this? Is that normal? She has dementia/alz.

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My mother has severe arthritis and stenosis of her spine, so I know she hurts. I think she tells the doctor she has no pain for two reasons: first, she doesn't feel too bad at the moment when sitting down and, two, she wants to be seen as more healthy than she is. I guess it is pride that does this. We want to put on our best face in public.
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Mom called at 6:15 am and said she was in agony, to come over right away. I asked if she took her pain pill at bedtime. She said she didn't need it then.
Her son gave her two choices, to take the pill or call 911. She took the pill and a half hour later she was fine. Knowing this, and noting that both your mom and ours was always "fine" at the doctors office, I think you are being played like a fiddle. If you had a nanny cam, I bet you would see her moving around free of pain when you are not there.
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I guess that was how to be manly in those days and lets face it men were more manly then they had to be!
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Take my answer with a grain of salt, as I only have my own experiences to go by, but it could be a generational thing.

My grandfather was born in the 1920s and even though he had lung cancer, he would never tell the doctors that his pain was as bad as it was, because "in (his) day, people didn't complain so much." My mother and grandmother would always have to sit in the doctor's office with him and ask him to tell the truth, but he never would because it was so ingrained in him to downplay any discomfort.
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fligirl just a thought? i cant eat wheat and have been reading about the effects it can have on arthritis cutting out wheat may ease her pain? also green lipped mussle from NZ are supposed to help with this you can buy them i health food stores!
Did your mum have a few breaks when she was younger? mum broke her arm 3 times in her life but she only gets a bit of pain when its cold in winter even then not too bad but that could change!
At least your sister is coming up and can relieve a bit of stress on you!
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Thanks all, but my mom has always minimized her pain as she has had (not what is going on now) severe pain her whole life and was not a complainer. This is different, I see it everyday. She is not afraid of doctors, or tests. There are none that can be done, we know its arthritis and bone on bone knee pain. I was so angry yesterday and still today but like I said what can I do for her? Nothing. Well my sister said that she is coming up for moms next pain appointment and is going to go see her pcp by herself. That would be great but lets really see if she follows through with that.
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fligirl sounds like "little boy who cried wolf" gosh so frustrating? could she be in pain and afraid of tests i know mum is just DONE with tests and i dont blame her! i think the eldery just get fed up with constant tests and exams and would rather just be in pain? BUT what i dont get is why she dosnt resist seeing the doc? mum fell and refused to see the doc but i know she was alright and she could walk and move around mum will not go to see a doc now as she thinks they are trying to get her into a NH? this i understand but your mums behaviour is confusing and no doubt so annoying for you. OR is this another part of dementia that i have yet to experience? Hugs this would really annoy me!
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She is most definitely faking for the doctor. The minute we walked out of the dr office she started complaining about her knee. Last night she was asking for more pain meds and I said that she had her days worth but I gave her 2 tylenol. I said right to her that why do you tell the doctor your fine and you are suffering. She said well then you talk for me and I said I do and that is getting you nowhere and she said it again and I am done trying to speak to the dr for her. Its not working and it just gets me more upset than I already am. I called her pain dr. on Monday, Tuesday and Thursday of this week and have not even received a return call. Completely unprofessional in my opinion.
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Is she faking for the doctor or is she faking for you?
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Actually mom used to never complain about her pain. So for her to be saying ouch and other things I KNOW she is suffering. Her doctor actually said that they would not give her more pain meds to ease my anxiety. I was really taken aback by that comment however true it is but he did not mean anything by it and he did come back in the room and tell me that if they see them and they say they are not in pain then that is what they go by. Then I asked her why is she not telling him how much pain she was in so when he came back she tells him how bad it is and looks at me and says ok. HAHAHHA Now that was kinda funny.
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I have an opposite problem is that mum never complains of any pain? this is her nature even before she never really complained about pain? i worry now that she could be in pain but dosnt mention it? of course this could change later as her illness progresses? she fell out of bed a few wks ago she didnt seem to be in pain but OMG when i saw the bruise i thought how can she not be in pain? i worry as i think she is terrified now of docs and if she says shes in pain i would get the doc?
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I would suggest that you take a calendar and ask her every day what her pain level is. Then bring that calendar to the doctor and explain that she minimizes her pain in the office. Ask firmly for a script for more pain meds so she can be kept comfortable in between visits.
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My Wife and I recently used a voice recorder to tape a sundowning episode with her mother. We played it back for the Hospice nurse so she could get a better idea of what she does when sundowning.
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We asked the pcp about hospice but he said not yet, maybe in 6 months. We asked him to have be considered housebound, she never leaves the house, only for doctors appointments and she is in agony. We are in the process, hopefully of getting a doctor to come to the house for everything once a month. That would be so great for mom not to have to go out. Thanks you guys.
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Dementia patients do not process pain in a typical way.. is Hospice an option?
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Mine does that all the time. At home she is in agony. At the doctor's she says she has no pain. Drives me crazy.
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