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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.

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disgustedtoo, has your Mom been checked for Varicose Veins?

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 :(
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disgustedtoo Dec 23, 2018
They did do ultrasound on her legs, no issues reported. Looking up diagnostics for varicose veins says this is what would be done, in addition to physical examination, so it sounds like this is not the issue. Hopefully it will resolve itself or the ortho can recommend something. In addition, if OT can get her moving more (she sits WAY too much!) it might help. When I called Saturday, they said she had started using her walker again... Monitor, check and cross fingers!

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!
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If she is having trouble standing and walking them 'something' is going on. Sometimes people with dementia will have trouble pinpointing where they feel pain or expressing it - my mom consistently told the nurses she had no pain but if I asked specifically about a headache, her knees, her hip etc she would agree she had pain there! Also your mom could be complaining about her leg (legs) when what she is really feeling is pain in her feet, knees, hips or even her back.
Teepa Snow has some videos that may help you figure this out
youtube.com/watch?v=9kSjHtHSJCw
youtube.com/watch?v=-na0bx0KGAo
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disgustedtoo Dec 22, 2018
I agree there is "something", but it is not clear what. I have not watched any of these videos before, but I took the time to watch these you posted and several others that followed them, none of which was enlightening.

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!
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My mother has progressive dementia & the only time she's 'happy' is when she is sick. In her words, SO SO SO SO sick. One thing after another, one phantom pain or problem, never life threatening, 6 trips to the emergency room, a couple of hospitalizations later and guess what? She is in better health than I am at 61 (she's 92). There is nothing wrong with her, yet she's constantly SO SO SO sick with something or another. She does have mild neuropathy in her legs which "kill her" 24/7.........she insists it's HORRIBLY bad neuropathy, but the neurologist disagrees. Every time, I try to jump in an 'fix' whatever it is that's ailing her, to no avail whatsoever...in fact, she gets a kick out of telling me the latest remedy I've found for her 'doesn't work and only made me SO SO SO dizzy!'. So I formally GIVE UP! I love Alzh's idea about giving her mom an Aleve & calling it a day. If something is REALLY wrong, the facility WILL call you and they WILL call an ambulance. In the meantime, you have to figure that nothing is seriously wrong. I really doubt you can find a doctor to give your mom injections in her legs since all of her tests are negative. They'd technically be treating nothing! Dementia & certain personality traits lend themselves to hypochondria & constant illnesses, I'm afraid, real or imagined.

Best of luck, I know how tough this really is!
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disgustedtoo Dec 22, 2018
If she were one to have constant or recurring complaints, I would chalk it up to hypochondria, but she is not like that. Only a few complaints and most were actual (cold/cough, a week or so of under-jaw pain, suspected "mealtime syndrome" and refusing to eat much as a result, which is a blocked salivary gland, sore hand due to a little tumble.)

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.
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Hi. I have a mom with Alzheimer’s and pain in her leg as well. She can’t really explain what’s going on but tells me it hurts really bad. Like your experience, when taken to a doctor it’s a, “why are we here?, I didn’t say anything is wrong” She’s had x rays and such but nothing shows up as broken or fractured. Anyway, at the risk of sounding harsh and cold, I’ve come to the conclusion that any visit to the ER, doctor, specialist etc., has been pretty traumatic and stressful for her at the time( though she forgets) and for me constantly. Now I just give her an Aleve, tell her if it still bothers her, we will go to the doctor, and then in an hour I ask her how her leg is. She always looks at me like I’m nuts and says, “ my leg is fine, what makes you think it isn’t?”. So moral to my experience, whether pain is imagined or real, she seems fine until my next visit and then the same broken record plays. “ I need to get the hell out of here” and then all the reasons why, followed by her ailments either real or imagined, her telling me she just wants to be put in the ground and be with her husband and concluding with she wants to go home( to her childhood). As I said, it’s going to sound harsh, cold and perhaps cruel, but at this late moderate stage of her disease, it’s about getting through each day without going bonkers. She gets a UTI every month due to not staying hydrated and refusing to drink. I’ve taken her to hospital for IV’s to hydrate her repeatedly which have been traumatic and combative due to the delirium they cause. She’s not going to be happy, she’s not going to be healthy and I’ve come to the conclusion that until she is elegible for hospice, my job is to keep her safe and fairly comfortable and Aleve has been the answer for the leg pain for us at this time.
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disgustedtoo Dec 22, 2018
Sounds similar, except her wishing to pass on or responding to other pains elsewhere. This is only the legs (mostly left) and as mentioned in another reply she did have a brief complaint of left leg pain back in Feb, but it resolved itself, she still walked on it and that was that. X-rays did not reveal much, but having gone through intense pain due to cervical discs, etc myself, I know that often x-rays don't really help much. There is no "test" for pain and unless others can experience the pain you have, they do not understand. Given that mom is not one to really complain much, this is baffling (she is experiencing pain, whether real or not, but sometimes seems to be able to "function", such as not responding to doc's touching her legs and standing by herself in the doc office, as well as pulling herself along in the transport chair to bathroom, and standing/walking in/out to do her biz without complaint, yet as of yesterday still getting assistance dressing and being wheeled to dining/sitting area.)

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.
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