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My mother has always had a very high tolerance for pain. No novocain needed at dentist no matter what they were doing, etc. She is now 86 and seems even more impervious to pain. She fell Friday night and cut her arm badly on the end of the basket handle of her rollater. She insisted she was fine despite the blood dripping on the floor and the fact that she couldn't get up. I ignored her protests and called 911. They took her to the ER where the doctor said he couldn't believe she wasn't screaming in pain. She said it didn't hurt. He applied numbing medicine anyway. Apparently the cut went almost to the bone plus several inches of torn skin. It took him an hour to sew up the inside of her arm. The skin was too thin to hold stitches. and they were unable to pull it together. Home at 2:30 am. BTW, She kept asking me why she was there. She didn't remember the fall or the ambulance. Back to urgent care Sat. because she was bleeding through the bandages (but it still didn't hurt). Only wound care appointment before next week is Thurs at 8am. That will be fun since she doesn't usually get up until 1 pm. Meanwhile, I am dealing with the bandages since the open wounds keep seeping. In addition to current situation, I'm worried about how to tell when she is ok or not ok? Is this high pain tolerance common? How do we deal with it?

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Seems like that's the case with my mom. She was basically addicted to narcotics for 50 years and when she turned about 80, her Dr wouldn't give her anything opioid related for pain. Weirdly enough, as she's progressing through dementia, she really doesn't complain of pain.
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Same with my dad! He used to complain of neck pain all the time
And took tramadol every six hours. He even wanted it by his bed so he could take it in the middle of the night. Now he never mentions having pain anywhere.
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My mom has dementia. She would not verbally express pain.  She would become aggressive when being cared for and often grimaced. Once she got on routine pain meds, she became cooperative and is walking better and sleeping more. The other thing she did when she was in pain was stop and put her hand on her hip when we walked. So I believe she was having hip or back pain.
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Some people are born without the ability to feel pain--here's the wikipedia link:

wikipedia.org/wiki/Congenital_insensitivity_to_pain

Some medical papers say people with dementia become more aggressive when they are in pain, or they may become even more sensitive or lose the words to describe pain.
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My mom had a ton of dental work done recently- teeth pulled, root canals etc and not only did she not remember any of it, she never complained of pain. We gave her Tylenol in case she really was in pain but she would say there was not much pain. Maybe their receptors diminish as the dementia progresses
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I think that sometimes long term use of strong pain meds is more about addiction than actual pain, so it makes sense that once they are weaned off they are no longer needed.

I also think that many of the very old are so used to experiencing generalized, chronic pain that they just accept it in the same way they accept the other infirmities the now live with. It doesn't mean they couldn't feel better without regularly scheduled pain medication though.

And finally, I know my mom is unable to articulate when and where she has pain, so when she seems "off" it takes some investigating to try to figure out what the problem is. And since she isn't on anything stronger than tylenol the nurses tend to dismiss her pain as minor rather than take it seriously, I think poor mom just survives in a near constant low level of misery.
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No, it doesn't.
PLWD can feel pain but they cannot identify, describe nor isolate it. They can say "I am fine", but you can see that their behavior changes. And this change can be extreme - aggression, anxiety, pacing OR they withdraw completely.

There is a huge misunderstanding in the world about feeling pain in dementia. Instead of being given pain killers, they get antipsychotic medication. Because we see aggression as dementia symptom, whereas the reason for aggression is untreated pain.
Watch this video: youtube.com/watch?v=9kSjHtHSJCw

It is an eye opening knowledge.
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My mom has dementia and she does feel pain , she has osteoarthritis, hx of bil dvts in her legs , back pain and other issues ..she does not  verbalize it well but she becomes angry and she grimaces and I ask her mom are you in pain and she says no ,but being a RN I can tell she is in severe pain , which causes her increased anxiety and so I give her a pain pill and she is back to her happy self ,,,,people with dementia cannot express pain , sometimes don’t even show pain because their brain doesn’t work well enough to put pain and expression together..at work I always give my dementia patients their pain meds when they grimace or look uncomfortable,,,so yes they still have pain but maybe cannot tell you ..
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Thank you marmey you said it perfectly ,,, I agree 100% ...thank you ,,,
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In many cases you have to go by other clues to determine if the person is feeling pain.
My Husband had a very high pain threshold for as long as I knew him.
My biggest problem was he became pretty much non verbal very early on in his diagnosis so I had to look for facial clues, a grimace or furrowing of his brow to determine pain. But often that did not work either.
I think what happens may be two fold.
The pain is constant so a particular level of pain then becomes "normal" that combined with the brains inability to express in words the pain. And I think since the "wiring in the brain" is short circuiting anyway the misfires may not transmit to the pain receptors.

I think many people with chronic pain become so used to the pain that they would not know what "no pain" would feel like any more.
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Advancing Alzheimer's disease and narcotics do not mix..they already have balance issues even without narcotics or psychotropics. The more of these meds they are on the more likely they are going to fall and die from the fall. I know there is this movement to give marijuana to "treat" Alzheimer's but it borders on criminal abuse since these people cannot communicate what is wrong with them and pot is more likely to cause additional confusion AND falling. Maybe if they are comfort measures only (fixing to die so they stay in bed most of the time) narcs may be humane but leave those issues up with your doctor.  Now I do know if they are still walking around you better watch out about giving narcotics. You know their chances of falling will increase. My mom gets stiff when it gets cold outside and I don't give her anything stronger than Tylenol or Motrin--because with advanced Alzheimer's she has that shuffling gait but she's still walking around a lot. And I walk her out in the park almost daily with her walker. It keeps her going. I also use Aspercream which is topical and that seems to help her (I apply it on her lower back and hips and knees and fingers). 
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Grandma1954 - Yes, and you become used to the pain and you live with it. But you are anxious all the time as well. And people think this is normal for you. But there are days when you are much "softer" - not because you are having a good day, but because you are pain free.

There can be head pain, bone pain, joint pain, meds pain, wrong shoes, trousers, diapers, hair etc. Thousands of reasons. There can be a spiritual pain as well. They do feel pain - but we are so focused on dementia symptoms, that we do not read the signals, they send to us. We need a new approach to dementia care.
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My dad has non treatable prostate cancer and doesn’t complain of pain. The aides at his AL look for facial cues as if you ask him if he is in pain he says no. He is on a low dose of tramodal.
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Pain indicators:
facial expression, voice volume, making sounds during actions, guarding of body parts, grabbing or holding objects, grabbing or holding you, repeating a movement or action over&over, more confusion and disorientation, refusals, anger towards others, crying, whimpering, whining, grunting, gritting teeth, stillness - no movement, holding breath, complaining, begging for help, not eating or drinking, asking for God's help, wanting to "end it all", begging you to "please do not hurt me"
And it is harder for:
- people who can't talk
- people in late stages - not aware of their needs
The above comes from Positive Approach to Care program developed by Teepa Snow. If you are not familiar with it yet, I strongly recommend you search their website and you tube channel.
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My mom just had six staples put into her scalp and didnt bother with them or even react when staff did. She didnt react when staff took them out! She is quite active woman and will definitely tell you or slap you if she doesnt like what you are doing.
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This is the simple answer from a response above:
“because their brain doesn’t work well enough to put pain and expression together...”
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My 87-year-old mother has AD or vascular dementia. During a recent visit, the monthly routine taking of vitals by the assisted living facility nurse revealed that my mom had a temperature of 103, and my mom felt no symptoms! No chills, headache, or feeling hot. Of course, we took her to an after-hours clinic because I recalled reading here that UTIs can be a cause of fever, as well as the "bad memory day" she was having. I noted that she was coughing also. Sure enough, my mom was diagnosed with the flu, bronchitis, and a UTI. My mom said she felt "fine" and didn't recall coughing within seconds of coughing. She does feel the back pain she has, and she grips her back when we are out, which means she needs a Tylenol or Ibuprofen. So I know she does feel and express being in pain, and I don't know why she didn't feel her high temperature or her coughing and congested lungs. As a result, I tasked the assisted living CNAs to take my mom's temperature every week, so we can catch any infections she seems unable to feel. It was a strange experience, but there seems to always be something new with dementia's progression.
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Was 8 AM the only option for an appointment? Would it be possible to change it to sometime in the afternoon? Sometimes there aren't any options, but whenever I make an appointment I try to plan it so it doesn't interfere with my meal times, make me have to get up earlier than usual, or have it early on a winter day in case the weather is bad and streets need to be cleared first. For example, I have an eye appointment tomorrow at 2:30 PM (scheduled during my last appointment in July).
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My experience with my mother's dementia and pain lead me to believe that it may depend on the nerves affected by the brain, and the type of pain. My mother has osteoarthritis and feels a lot of pain in her knees, especially when rising from bed or a chair. However two years ago, she underwent a mastectomy (her second) because her breast cancer had returned...and showed no signs of pain. In fact, she wanted to get out of the hospital and go out to lunch (speaking of out to lunch!)... My niece and I were amazed -- we would have been writhing in pain... After the first mastectomy, around 1996, she was in a lot of pain. This was one of the first indicators that she wasn't just a 'little forgetful'... Again, in late 2016, Mom's pacemaker was replaced... we had to be careful to keep her from waving her arm and pulling the stitches out! No pain at all. I think it depends on the person, but yes, sometimes they have no feelings of pain.
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In my experience, pain tolerance dropped instead of getting better.

DH complains more about everything. :)

But he's still here so I just work with it. :)
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I think Grandma1954 has it right.. some people have a very high tolerance to pain to begin with..and with many people, I find that they (including me) tend to ignore some pains until it just becomes so routine and you are used to it, you just don’t realize how bad you feel. I also think it’s entirely possible that one may not realize there is pain, much as they don’t realize who may be talking to them if they are advanced in this disease. It’s hard to tell unless they verbalize the pain...
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I finally figured out another behavior of my Mom’s that was a pain signal. She has osteoarthritis in her knees, gets SynVisc injections every month to relieve the bone-on-bone discomfort, and has taken arthritis strength Tylenol twice a day for years. Recently, she started sitting up in the middle of the night and we would hear what sounded like loud clapping from her room. She was actually clapping her hands onto her knees in a particular rhythm she had developed, and it would get louder and louder. At first I thought it was her new way of calling me to come look in on her. But I’d go in and ask what she needed and she’d say “nothing”, looking completely surprised that I’d showed up - and with complete unawareness that she had been making a lot of noise. She’d usually use that as an excuse to go to the bathroom in the middle of the night, which was fine, then she’d go back to sleep (while I would struggle to do the same for the next 2-3 hours). At one point, her doctor recommended doubling the pain medication by giving her both Acetaminophen and Ibuprofen twice a day plus rubbing Diclofenac Sodium into her knees up to 4 X a day, then wrapping surgical bandages around the knees to keep them warm. Lo and behold, the midnight clapping stopped. Hindsight being 20/20, I had one of those blinding flashes of the obvious— the clapping was a way to reduce the pain in her knees and numb them momentarily. SOOO very hard to interpret their language! But every little learning gives new insights into how their brain is and is not working. Best approach I’ve found is to just be fascinated and curious about every new behavior, try on various theories about what it is saying until something ‘clicks’, and don’t blame yourself if it takes a long time to figure out or if you never do. It’s a journey.
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My mom had MANY physical issues that caused chronic pain. She was on opioids for 40 plus years, As well as had a morphine pump surgically implanted in her body. As her dementia progressed she didn't complain about the pain. Where as in the past that is all she could talk about. I thought that her pain tolerance had increased as did the disease. But after reading many comments I NOW believe that the dementia was so severe she could not express the level of pain she was experiencing. I don't know if we will ever know the true facts (because dementia patients forget words and often do not communicate) My mom withdrew and use to be a social butterfly. Thinking back I should have known better. She passed last May at the age of 89. I miss her terribly but knowing she is no longer suffering and with the love of her life (my dad) who passed 10 years before she did, gives me some peace of mind.
After reading the comments I suggest she receives the meds for pain. It's very important to keep her comfortable especially since she more than likely can not remember the words to verbalize her discomforts.
I will pray for the both of you.
I hope my reply helps.
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Someone once told me that if a dementia patient has a sore toe but doesn't say anything what really it is that the pain to brain pathway to mouth to say something is broken somewhere so that they can no longer verbalise that they are in pain because they forget about it that fast - I go on that premise when dealing with mom all the time
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My mom has a very high tolerance of pain, she always has. I have to go in with her to doctor because, her answer to "how are you feeling"? Is always "fine"! She has ortho and rheumatoid arthritis, has had it for a long time. But I look at her face, you can see the pain in her eyes. Sometimes she expresses it differently, i.e. scratching, itching, or twitching. Sometimes I have to look at her closely because she won't complain about pain! It's a learning process.
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My 94 year old Mother, with vascular dementia, before her diagnosis, had arthritis, osteoporosis and a weak back. All she can say now is that she feels good. She has no pain anywhere. She does get a small dose of tramadol daily....however, she also does not move around too much. Pretty much relegated to her walker...is not active physically...and doesn't do much but sit on her sofa and watch TV.
And that's okay with me, her POA for healthcare. Maybe the receptors for pain just aren't functioning as well as before which could account for the lack of feeling pain. I don't really care....she is pain free at a time that, if she were, would just create so many more problems. It is a blessing in my opinion. Altho, I will add that, when she does feel pain from a fall, stitches, or in her head (not headaches), she does mention it, which is good. When Mom does complain about pain, I sit up and take notice because it is so rare that she does.
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Great video, marmey. Thanks so much for sharing it.
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Your mother may not have a pain sense.
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I had a similar situation with my mom...after nine falls in her home and refusing to get in the ambulance that her aids dutifully called, she was not so lucky with the 10th fall...she broke her hip and had to have surgery. She refused all meds before and after the surgery saying she had no pain and did not want medication. The hospital insisted on giving her one dose of morphine which knocked her out for 2 days! After that they gave her tylenol even though she never asked for any. She is 90 years old and has all her own teeth which have started to literally crumble out of her mouth. I got her to the DDS who extracted 11 teeth...same response...she refused all pain meds. Amazing!
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When I was 12, I tried to close a hopper window from below. The glass broke and came flying down on me. Two of my wrists got cut. Yup, the wrists. Blood was flying everywhere. I had two deep cuts that went close to the bone and had to be stitched up. I didn't feel a thing. I've been told that the cut probably tore nerves, and that's why I didn't feel anything. I don't know why the ER doctor expected her to feel something. But doctors are trained to diagnose, prescribe medications, and perform surgery, and not much else.
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