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I find it odd that my mother in law always complained about her knee and every time she had to stand up or walk she would carry on about the pain. Now that she has dementia it never comes up. Just curious if you lose the pain or she was faking it.
Now that you mention it, my mother complained less and less as her dementia became worse. She believed in "MIND OVER MATTER" most of my life and was sick very few times, but even when she was we had to be a detective and wring it out of her most times. She did have sciatica pain and yet she rarely complained so when she did you knew it was BAD. She had surgery about 18 months ago and because she did not remember that she had surgery she was climbing out of bed and basically acting like a child, a naughty one, so there must have been no pain.
"She was faking it, attention seeking. I have never known dementia to take away pain." Really? And this is a comment from someone with a photo indicating they are a nurse. This is callous and unbelievable. I pray that I never have anyone like this caring for me if I need it when I get older. True: We cannot judge someone else's pain, nor can we walk in their shoes. Have compassion, please. No one is faking pain for attention. Unbelievable comment.
Yes, it is really weird. My mom has Alzheimers for at lease 7 and a half years now and is in a nursing home. Before the Alzheimers, she had such reflux symptoms that she couldn't eat after 3:00 PM in the afternoon.......... She also had a lot of bouts of diverticulitis and landed in the hospital many times. Since the Alzheimers she never complains of any digestive problems, can eat anything and never gets bothered by her diverticulitis. I couldn't believe it when this began to happen, but I was glad because no worries about her diet. So am able to feed her mostly everything, but as a precaution, just in case, I do not give her nuts or seeds for the diverticulitis, but at least the nursing staff can give her a little sandwich at night time if she gets a little hungry. So now that I read this answer, it answers my dilemma of why all of these sicknesses just disappeared. Thank you.
Ruth Anne, you just reminded me that my father does not consider himself "old" at 89 but he has no trouble reminding me that I am old at 60. Thought that was funny - up at a point.
jeannegibbs - hers and another post were under mine. And appeared around the same time. Both addressed some of what I had posted. I always try to remember to use names in responses too. That way there is no mistaking who the post was intended for. That is why.
Karen if my comment was hurtful it wasn't intended to be - I actually asked Mum's doctor last night (after he nearly crashed into me I figured he owed me!!!) He said the pain doesn't go away - it can't unless she has had treatment that would have dealt with the issue. What he did say was that you should be looking for weakness when she stands especially if there is a tilt in the body as that is a big indicator of pain that the brain's preceptors are not picking up. He also said that some people with dementia (depending on the type of dementia) would be unable to articulate the pain - he also said that some people with dementia (like my Mum) feel pain that does not exist whilst having pain elsewhere that they don't recognise.
I asked how that worked and he said we don't know for sure, we are just aware that it is so. Because I always try to get every last ounce out of these docs I said how can you treat that then? He said we can't all we can do is remove all the treatment we are not sure about and do more tests until we are sure. With things like arthritis and all things similar we can find out through X-rays etc and for the internals we use CT scans and ultrasounds and those together with blood investigations usually give us the bigger picture but it is not 100% ..if only it were that simple. He added sometimes we have to monitor very closely sometimes we can do that off site using heart monitors that people can wear - as with all dementia it is never the same for any two people - that is why it is such a frustrating disease
fedup15, why do you think Beazer was responding specifically to you? The OP itself contains a reference to "faking it" about pain.
It would probably help if we all used the name of the person we were responding to, it it isn't the OP. That's what I did in this post, for example. But getting everyone to agree to that and to remember it is probably more than we can hope for.
I, too, hate hearing people accused of "faking it", but I didn't hear you say that, fedup15.
My mother started complaining of knee pain years before she was diagnoised with Alzheimers. A Dr. at a research center we took her to for awhile told me that they now feel that chronic knee pain and an unusual gait are early signs of her disease. My mom's pain magically went away for a few years but is back now and totally confuses her. Be thankful that it is not something you have to deal with right now but don''t be surprised if your mother-in-laws knee pain comes back in the future.
My mom does feel pain if it is an injury that results in bruising cuts etc. But she no longer complains about her arteritids aches which were very real. She stopped complaining about that plain abot 5 years,ago. She has had Dementia for 15 years now. In advanced stage now.
Beazer - who were you responding to. I never said my Mom is faking it. I said her pain is mostly (medically documented) muscular from not moving - for years. She lays in the same position for 23 hours a day. She does nothing but read. Some of it is perceived pain - (thus the psychosomatic). For example, she had a bad rash under her breasts that I had to wash and medicate everyday. She reacted as though I had killed her when I hadn't even touched her yet. She is mid way thru vascular dementia. So, if you were speaking to me you were way off base.
It has been my experience that the more my Aunt's dementia increases, the more difficult it is to describe or even acknowledge pain. I know she hasn't been faking lately (though I think early on she exaggerated to get attention). So rather than assuming she was faking, err on the side of caution and assume she doesn't recognize the pain and, as has been stated, watch her body language and act accordingly. Good Luck!
Not necessarily faking it for attention before. My aunt used to be able to articulate pain well, and went to the correct doctor/dentist to take care of it. Now she doesn't say so, but behavior tells us. For example, she suddenly stopped chewing food. She didn't know why when asked, or couldn't find the words. I took her to a dentist, who found a broken tooth, and cavities needing tooth removal. She got new dentures as well, and is again chewing dinners.
My mom had a lot of pain from arthritis and foot issues before her dementia set in. After the dementia was,around for a while she seldom mentioned any pain. Dementia can take the sensation of pain away. But i also see people at her Memory care facility who are in real pain. I guess it depends on the person.
Pain and other medical issues in dementia patients is a mystery. I don't think there is any way to know for sure how the pain is being reported.
My cousin had severe dementia when she fractured her spine. She was able to report that pain consistently as it healed. It continued to bother her up and until she started on Cymbalta. (She already was disabled with arthritis when she sustained the fracture.) Once on that med, her report of pain gradually went down. Now she reports no pain in her back, even though she still has the arthritis. HOWEVER, she still will occasionally report that her knee hurts. Most of the time she says it's fine and doesn't hurt.
Even though she has severe dementia, she seems to still has the ability to accurately report pain or the lack thereof, though we can't know that for sure.
What is amusing is that for years before my cousin got dementia, she reported having terrible allergies. She reported runny nose, drainage, sneezing, etc., but now with dementia, she doesn't have any of that and she's not on any medication for it either.
She used to have a long list of foods she couldn't eat, because they gave her indigestion/made her blech, etc. Now, she doesn't have that at all. She doesn't seem to ever get indigestion. She no longer remembers the foods she doesn't like to eat either. She likes everything.
Karen, excellent question. My boss' wife had Alzheimer's for 15 years and he noticed in the last couple of years that she didn't give any indication of pain when she stubbed her toe or got her fingers tangled up in his office building's front door. Thus he didn't know if she could no longer feel pain or was unable to communicate she was hurting. She showed no signs of hurting, like she didn't rub her fingers after the door incident.
I did an interview with my mom yesterday. Before her mind goes i wanted her to tell me what its like to be old. She related some very interesting things to me and told me i had her premission to share her thoughts, which i will later today. But one thing she told me about her pain is that she does not let on to others how much pain being old carries. For two reasons, one if she can bare it she doesn't want to worry others and two she tries to block it out not dwell on it. When she needs a pain pill she asks but there are times, really all the time i can see she hurts and that hurts me too. Pain is a very real monster we all deal with, just think of the last time you had a tooth ache...now there is real pain! My alz client does not communicate much any more but as others mentioned i look for the clues, limping, rubbing or pointing at her knee they are there if you watch for them. I do hope the best for you and all who deal with pain issues. I would never minimize it to anyone. Ruth Anne
I'd change my husband to another facility and have new doctors. Why continue where his pain is ignored and he is suffering? CHANGE! There are Christian organization who care...reach out to them. the squeaky wheel gets the grease...rarely do they replace the wheel when you are trying to save a loved one. Go for it! It can't get worse it sounds like.
I have been caring for a husband with dementia for over 12 years, and his pain level has certainly not gone down as the dementia progressed. He has severe arthritis, spinal issues, and extensive nerve damage from a deteriorating spinal fusion. All this was documented by doctors, both before and after diagnosis.
One of the fears I have about him being in a nursing home is that they will not take his pain seriously. (I have read that some "problem behaviors" in nursing homes got much better when patients were given medications for pain. That only makes sense. It's a very rare elderly person who doesn't have some issue that would cause pain. Certainly, if all of my own pain meds were taken away from me, there would be some serious behavior issues!)
One thing I have noticed about his pain is that he is not nearly as stoic about now it as he was back before dementia came along. He just doesn't have the mental resources to deal with the constant pain now. The pain is continuing to get worse as his physical problems worsen, but his coping skills are deteriorating. It's very sad to see him suffering with the pain.
By the way--one problem many elderly people have is a vitamin D deficiency. A low level of vitamin D can cause quite severe pain, in both bones and soft tissue. At the last nursing home where my husband went for respite, nearly every patient was on a vitamin D supplement.
I have chronic pain and it is medically verifiable (xrays) but many times it is not. Fibromyalgia for instance. Arthritis. How can you say a person is NOT in pain? You cannot. You can't read minds. You can't FEEL for them. Never judge. Pain is personal. If they say they are in pain, believe it. More often than not it is. You can give meds to see if behavior changes but many times you can't tell by that either. When the brain is affected, there is no way to tell. Even neurosurgeons can't understand the brain. Trust me on that. Been there. Medicine is not black and white. With the internet we are learning that doctors do not know it all...we use reviews to weed out the bad docs. So there ARE bad docs. To ignore pain of someone who cannot communicate is cruel...that is my opinion and I know I am right as I suffer with chronic pain. Doctors and the internet tell me there is no way to prove or disprove pain. Don't judge. If judging could put a person who cannot communicate at risk for suffering. Better to relieve pain you think isn't there than to ignore what is possibly making their lives miserable. Opioids cause constipation and other problems but you cannot deny a person relief if they truly need it even if you can't see a reason for it. Even doctors cannot tell you if pain is imaginary or real. SOMEtimes they can with tests but they can't see all pain on tests. Pain is so terrible....and then there are STOIC (sp?) people who don't show emotions such as pain. And many times pain comes and goes. So be careful saying pain is imaginary. I've been there...judged by doctors I had to quit because they didn't believe me even though part of my spine is missing so imagine how people feel who have pain and DO have their spines in order? Why are we so quick to judge and say someone is faking? What do we gain from being that way? We keep someone off of medications? Well how does that change the world? I'd rather err on the side of helping someone who says they are in pain than erring on the side of not treating their pain. Now if they want more and more and more after reaching a high point of treatment including tens units etc...then maybe they are drug seeking. But how can you know til you reach that point? THEN you can suspect that it's a mental/drug abuse thing without worry. MY OPINION. My best to you.
It makes me sick when I read people saying "she's faking it" how in the world do you know this??? Shame on you, (that's nicer then what I wanted to call you) my mom had Dementia, she was bed ridden for 8 years and I took care of her, she passed April 5th 2015, my mom was in so much pain she took pain med's every 4 hours, even with Dementia she never forgot when she hurt, I don't understand what having Dementia has to do with hurting, anyone in their 80's or 70's are going to have pain after putting your bodies through all you do everyday unless your superman or woman and as for "Pam" who said she's faking it, how dare you?? You don't know her, I hope when you get old and in pain someone holds out on giving you your pain med's and tells you "I think your faking it"
Soooo True {Q}On the other hand, dementia patients may perceive pain when there is no detectable cause for it.
Other things that can be effected by having dementia include the sense of smell, depth perception, the sensation of being hot or cold, and the sense of taste.
Dementia is very definitely not limited to memory issues. In some kinds of dementia memory is a secondary problem.{EQ}
Psychosomatic means mind (psyche) and body (soma). A psychosomatic disorder is a disease which involves both mind and body. Some physical diseases are thought to be particularly prone to be made worse by mental factors such as stress and anxiety. Your current mental state can affect how bad a physical disease is at any given time[/url]
My Mom has developed an extreme sensitivity to even the smallest pain that most of us would just shrug off. She has always had some kind of pain or another. Her issue is that she never moves (for years and years), never changes the position she lays in. Her muscles are absolutely screaming from inactivity. She had years of years of pain management and meds, shots, that didn't work. After I weaned her from these, her pain was the same as when she was on the meds and shots. Some of it is psychosomatic, some muscular. But not as bad as she says it is. Attention getting sometimes. We have tried exercises and walking, but she won't do them. Dementia is a horrible thing.
The brain is a big part of the perception of pain. That's one reason we have to watch for body language that may indicate pain that they can't articulate. We don't want to make the mistake of thinking that they have no pain just because they don't say that they do.
Arthritis pain can come and go and even certain movements or sitting in certain ways can make it better or worse (in some cases). I'd watch for limping or other signs of knee pain but for now she is either not perceiving the pain or she is having a bit of a remission. Just stay alert.
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
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You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
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Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
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Really? And this is a comment from someone with a photo indicating they are a nurse. This is callous and unbelievable. I pray that I never have anyone like this caring for me if I need it when I get older. True: We cannot judge someone else's pain, nor can we walk in their shoes. Have compassion, please. No one is faking pain for attention. Unbelievable comment.
I asked how that worked and he said we don't know for sure, we are just aware that it is so. Because I always try to get every last ounce out of these docs I said how can you treat that then? He said we can't all we can do is remove all the treatment we are not sure about and do more tests until we are sure. With things like arthritis and all things similar we can find out through X-rays etc and for the internals we use CT scans and ultrasounds and those together with blood investigations usually give us the bigger picture but it is not 100% ..if only it were that simple.
He added sometimes we have to monitor very closely sometimes we can do that off site using heart monitors that people can wear - as with all dementia it is never the same for any two people - that is why it is such a frustrating disease
I hope that helps xxx
It would probably help if we all used the name of the person we were responding to, it it isn't the OP. That's what I did in this post, for example. But getting everyone to agree to that and to remember it is probably more than we can hope for.
I, too, hate hearing people accused of "faking it", but I didn't hear you say that, fedup15.
In advanced stage now.
My cousin had severe dementia when she fractured her spine. She was able to report that pain consistently as it healed. It continued to bother her up and until she started on Cymbalta. (She already was disabled with arthritis when she sustained the fracture.) Once on that med, her report of pain gradually went down. Now she reports no pain in her back, even though she still has the arthritis. HOWEVER, she still will occasionally report that her knee hurts. Most of the time she says it's fine and doesn't hurt.
Even though she has severe dementia, she seems to still has the ability to accurately report pain or the lack thereof, though we can't know that for sure.
What is amusing is that for years before my cousin got dementia, she reported having terrible allergies. She reported runny nose, drainage, sneezing, etc., but now with dementia, she doesn't have any of that and she's not on any medication for it either.
She used to have a long list of foods she couldn't eat, because they gave her indigestion/made her blech, etc. Now, she doesn't have that at all. She doesn't seem to ever get indigestion. She no longer remembers the foods she doesn't like to eat either. She likes everything.
One of the fears I have about him being in a nursing home is that they will not take his pain seriously. (I have read that some "problem behaviors" in nursing homes got much better when patients were given medications for pain. That only makes sense. It's a very rare elderly person who doesn't have some issue that would cause pain. Certainly, if all of my own pain meds were taken away from me, there would be some serious behavior issues!)
One thing I have noticed about his pain is that he is not nearly as stoic about now it as he was back before dementia came along. He just doesn't have the mental resources to deal with the constant pain now. The pain is continuing to get worse as his physical problems worsen, but his coping skills are deteriorating. It's very sad to see him suffering with the pain.
By the way--one problem many elderly people have is a vitamin D deficiency. A low level of vitamin D can cause quite severe pain, in both bones and soft tissue. At the last nursing home where my husband went for respite, nearly every patient was on a vitamin D supplement.
{Q}On the other hand, dementia patients may perceive pain when there is no detectable cause for it.
Other things that can be effected by having dementia include the sense of smell, depth perception, the sensation of being hot or cold, and the sense of taste.
Dementia is very definitely not limited to memory issues. In some kinds of dementia memory is a secondary problem.{EQ}
Psychosomatic means mind (psyche) and body (soma). A psychosomatic disorder is a disease which involves both mind and body. Some physical diseases are thought to be particularly prone to be made worse by mental factors such as stress and anxiety. Your current mental state can affect how bad a physical disease is at any given time[/url]
Symptoms are real and not faked
Arthritis pain can come and go and even certain movements or sitting in certain ways can make it better or worse (in some cases). I'd watch for limping or other signs of knee pain but for now she is either not perceiving the pain or she is having a bit of a remission. Just stay alert.
Great answers from the community as always!
Carol