I have found several posts about this question, but new or old they are closed to discussion.
Background:
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.
Sitting most of the day doesn't help, but so far no one has been able to get her "moving", other than back/forth to room, dining, bathroom. Before getting me involved, they did try bringing in OT because she was having difficulty dressing and not showering, but given that she is "in pain" and cannot stand/walk, dressing and showering WOULD be an issue! Until pain goes away, OT is probably pointless (and if it goes away she would not need them at that point either.)
Unless someone has some insight into how to determine if this is real or phantom, we will have to wait and see if this "resolves" itself and/or follow up later Jan with the ortho appointment.
Best of luck, I know how tough this really is!
This intense pain, unable/unwilling to stand/walk/dress and some food refusal came on suddenly and has been fairly consistent for over a week now. She did complain back in Feb of leg pain, but x-rays didn't show much and it passed fairly quickly (no moaning in pain, still walking although it hurt some, it was not nearly as bad as this.) Otherwise, self caring, and no complaints.
One thing in addition to telling the medical people on initial query that she has no issue is that after the Wed doc visit and lunch, she was "walking" the transport chair (pulling herself along with her feet while sitting in the chair). When asked where she was going, she said she needed the bathroom. I pushed her to the doorway, she got up, went in, did her biz and walked out again to sit in the transport chair. It is more than a few steps to reach the toilet. Rather odd that like standing in the doc office no pain or complaint. Yet when I checked by phone on Friday, she is still using wheel chair to come to dining area and getting help dressing. An appointment was set for ortho, but not until 1/23/19 (first available.)
If it resolves before then, decision to go or not will be made. If it doesn't, will see what this doc will say.
Teepa Snow has some videos that may help you figure this out
youtube.com/watch?v=9kSjHtHSJCw
youtube.com/watch?v=-na0bx0KGAo
Mom is generally fine and self-caring, once in a while has a cold or small issue, but MOST of the time there is nothing and she has no complaints. Her biggest issue is memory - clearly early on matches what the videos talk about, such as occasionally using the wrong words, can't retain new information, unable to do finances or cooking, being forgetful, etc, but we tried to keep her in her home and bring aid in - this lasted less than 3 months, 1 hr/day and then she refused to let them in. But I was already aware of it and researched dementia myself so as to "arm" myself as to what to expect (and have periodically explored more.) It also gave us time to find a place for her.
She can most certainly express herself, does not hallucinate, does not make up stuff, and again was performing all her ADLs unassisted. The only thing different in the 2 years she has been in MC was starting to use the walker earlier this year, but that was MANY months ago and has no bearing on this situation, and another step back in time - memory related only. She knows she has to use the bathroom, can mostly do that herself (sometimes doesn't allow enough time to get there and undressed, but that is a different issue), knows how to feed herself, was dressing/undressing, ambulating with walker and bathing until this happened.
She also would never agree to pain or other issue anywhere if she doesn't have it (suggesting head, arm, internal, etc, nope.) She is not responding to us asking where it hurts nor would she indicate another body part. This is just the leg(s) - mostly left, same as a brief less intense incidence of this many months ago (Feb.) Going to see someone, then she initially denies any problem, but attempts to get her up and about usually doesn't work.
So, at this point all I can do is wait. They Rxed ibuprofen and reluctantly referred to ortho. First appointment is not until later Jan, so in the meantime, wait and watch... see how things go. If it gets better, great. If not, see what ortho might say. If nothing, perhaps this is all in her mind!
I did suggest the staff offer her favorite ice cream bar if she is complaining about the intensity to see if that takes her mind off the "pain". Don't know if they have tried this yet... Kind of like upset tummy little Johnny gets just before school, then it magically gets better once the bus goes away!
My Mom had them and the veins would hurt one day but not the next. She did say her legs would hurt her if she stood at the kitchen counter too long, or went on a long walk. The veins were very noticeable when she was younger but she refused to spend the money to have the veins removed. When she was in her 90's and the pain had gotten worse, she was now afraid to have the surgery done. Sadly the pain would cause her to fall :(
Staff member found her pressure "stockings" we used a long while ago - she had mom put those on before the Wed doc appointment. Mom hates them, but if they help, have at it!