I have found several posts about this question, but new or old they are closed to discussion.
Mom (now 95) with dementia moved to MC January 2017 (will be 2 years next month.)
Generally healthy, only on meds for BP (anxiety meds as needed, usually because of UTI!)
First year was primarily self-care, walking unassisted, just short term memory loss, needs safe place.
Second year at some point started using walker, but still primarily self-care. No issues.
Suddenly about a week or so ago she began complaining of leg pain, was unable to walk and cannot stand to dress herself.
Sometimes she refuses to eat, saying she is in too much pain. I was told at least once she stayed in bed until noon.
She has needed assistance dressing (cannot stand to pull up pants/underwear, or move about) and had to be wheeled to dining area to eat, if she can.
Monday she had an appointment for macular degeneration treatments, but between a lingering cough/cold, not dressed and unable to stand/walk, the appointment had to be rescheduled (it is a long drive and a long process, no way would she make it through all that, nor would I!!!)
I stayed long enough to move her to dining area for lunch and watch her moan and complain and rub her legs (mostly left one) and refuse to eat, saying she is in too much pain to eat.
Staff had already contacted doctor, but since there was no response, I called. After being on hold, I was told they sent instructions to facility. You can't tell me???? WTF!!! After a while, when I was leaving, nurse went to check to see if anything arrived via fax. Nope. I waited, heard back later that an appointment with PCP set up for Wednesday. So mom is supposed to languish in pain (real or not.) for two days? Based on previous attempts to get through to this doc I decided not to wait and took her to the ER on Tuesday. They did blood tests, EKG, ultrasound, all negative. During the 4.5 hours she was writhing and moaning in pain (wish I had recorded it for the doctor!) They said no blockages, other tests negative and looked at her xrays from 8 months ago (also leg pain) and said it does not appear to be bad.
Of course when asked (initial contact at ER and doc office) she says there is no pain, she's fine, why am I here, I don't need this. Typical for whatever infrequent ailment she has or insists she has. Usually she is fine and very infrequent to hear complaints, so when she does complain like this I take it seriously. Of course, very end of doctor visit, doc checks her legs, but touching gets no results (just gentle pressure would have her flinching and crying out before this!) and when asked to stand, she did. At the hospital, their attempts before discharge to get her walking with walker or standing to help with dressing was not successful - could not stand on her legs due to pain! I did request consult with Orthopedics, because years ago she said she would need knee replacement (no way would I even consider this surgery!) IF her knees are that bad, I suspect it could be causing pain, and perhaps injection would help.
Doc also says because she has dementia she cannot verbalize (yet she insists on trying to ask mom questions, when mom is hard of hearing and cannot respond because she cannot hear!). Mom has no problems verbalizing. She is only suffering from short term memory loss, and drifting backwards in time (asks about parents, most recently has forgotten brothers married/have kids.) Until this episode, self-care, eating, etc was fine!
I don't think it would hurt to at least consider trying injections - it might rule something out (aka if it goes away, perhaps it was the knees, if not then likely this is phantom pain?)
Anyone else have any experience with this? Suggestions? I mulled over trying to give her "fake" pills and/or "fake" patches for her legs to see if this "cures" her.