Is there anyway to know if pain is real or it is the dementia?

My 85 year old father-in-law is in a nursing home close by. He's on a bunch of medications for high blood pressure, edema, seizures, congestive heart failure, and an anti-depressant. Most mornings he calls my husband complaining of pain. Sometimes he says it's his entire body, sometimes headaches, sometimes legs. If he's asked how bad on scale of 1-10, he'll often say a 10. Sometimes when he's asked where is the pain, he'll say from head to toe. He'll repeatedly say he's never experienced this before, that he needs to go to the ER, and yet, according to the nurses, he will often refuse pain meds. I would think pain of a 10 from head to toe would have a person in the fetal position and screaming in agony. He's also hard of hearing, and has never been a great communicator. We believe he is in pain, but we don't know if there is a physical reason that can be helped or if it is psychosomatic. The nurses are spread too thin, and I believe they are largely ignoring him now because it is almost every morning and usually by around noon he's OK. He will also complain of his incontinence repeatedly, when he's been told time and time again, by doctors and us, that nothing can be done about it. He's always been a high-anxiety person. This has gotten worse with his declining health, and no way to pass the time. We wish we could give him some relief, but we do not know how to help him. We get him out of the nursing home 2 to 3 times a week, and when we do, he feels the best.

I have a similar problem with my Mum. She is 95 and has oedema in her legs. They seems to cause her agonising pain.
She cries out when sitting with her legs up or down.
She struggles when she moves with her walker to get to her stair lift and on bad days even when she uses the commode only a couple of steps away.
The district nurses, who dress her legs daily, say they aren't that bad compared to some they see and some are sceptical about the amount of crying out she does when they change the bandages.
Some days she is gasping saying, "I can't stand it." and "It's sheer agony." literally continuously. She grimaces and clenched her hands. It's awful to watch and not to be able to help her.
Other times she is less hysterical but still constantly saying her legs are so sore and she can't stand it.
The only peace she gets is when she's asleep.
She is on a huge amount of painkillers which actually seem to make no difference:
10mc butrans morphine patch weekly
5 ml oral morphine 4 or more times a day
600mg Gabapentin 4 times a day
2 paracetamol 4 times a day.
Last week the doctor tried 1/2 Lorazepam twice a day but she fell over twice so we stopped that.
She has now increased to a 20mc morphine patch but even this has't eased her pain and distress.
Has anyone else experienced an Alzheimer's sufferer feeling such extreme pain and have you found a solution?
Thanks, Margaret Neil

My wife is 76. She has dementia heart desease and chronic stomach prolems. We have been through the same. Xrays, cat scans, upper and lower gi gall bladder test. You need it. dr.s find nothing. Pain and nausea meds only put her to sleep and make her more incoherent. I don't want to put her in a nursing home but I'm at my wit's end. I don't know where to turn and I don't believe I am giving her the rreaent at home that she needs. If she a couple more pounds they are going to want to put in a feeding tube. It's tareing me up to see her like this after 57 years.

I found this site by googling "Alzheimer's with burning stomach pain." At first I was disappointed when I saw that the conversation began 5 years ago, but then realized that, unfortunately, it is so common that it's still being discussed all these years later. I take a comfort, albeit guiltily, that I'm not in this boat alone. I guess it is true after all that misery loves company. It's just, after awhile, you can begin to doubt your sanity or worse, feel overwhelming guilt that you aren't able to locate and stop the source of the pain that doesn't seem to show up on any known medical test. God bless and help each one here as we navigate this difficult season.

Sounds like we are all in the same boat. My Mom who is 93 took a turn for the worse at Christmas. They think TIA (mini-stroke) but now she is exhibiting symptoms of dementia. She has complained with her stomach, either nausea or pain, for weeks. I'm at my wit's end as to what to do. This happens every morning around 4 am & she is usually fine by 10 or 11 until she goes to bed & then back up at 4 am sick again. I'm exhausted & am thinking it may be time to find her a place where they know how to care for her. I feel helpless & frustrated.

My dad has Alzheimer's. He's had abdominal pain and throat pain for years. He had at one time had the headache for it. Has had every scan, biopsy, blood test etc you can think of but nothing found. We've tried non narcotic, narcotic pain meds, acupuncture and all of the homeopathic things we could think of or were suggested. He never gets better. Gets worse as he declines. Wish we had an answer. His disease is bad enough.

I cannot tell you what a relief it has been to read the above-it is almost exactly like my experience with my 94 year old husband, "His" a and e are wonderful and show such compassion and care but his daughter and I are falling apart.Knowing it can be dementia helps so much

I have the same problem. My mother is the same age. I have a brother as well. When she doubts my care, she tells me to call him. So funny. Last September my mother's heart stopped for a few moments, she took a bad fall on her face, and in the hospital she took a fall on the back of her head. Biggest bump ever, but it went down completely, thank God. The problem is that she still feels it. I think they just remember pain like it was only yesterday, and then they refer to that pain again and again. My mom puts ice, water, etc for no reason. Doctor told her that its gone, but she still imagines it!!!. When I divert her attention to something else, the complaints stop. The minute she is board, she complains again. So I think its the dementia. Good luck to me and you. Iris.

Thanks but if it were only that easy would be a Godsend. LeaAnn's story is identical.

I’m new to this forum and yet to learn to navigate here. My brother found it and read to me about LeaAnn’s mother, it might as well have been our Dad. We’re in our 5th year struggling and was wondering what is this that we’re dealing with? Is there something specific or is it all in his head?

Had the same thing with my Mom. She broke out into a sweat and complained of severe abdominal pain. A trip to the ER, all the testing and nothing was found, and, the pain seemed to subside a couple of hours after she arrived to the ER. Very strange and SCARY. That intensity hasn't happened since, but every once in a while she will complain and it will turn out that she needs to do a #2. Perhaps these things are temporary bowel blockages or something. Not to be gross here, but I've also noticed that her poo's are HUGE. They have blocked the toilet several times, so I don't know if that is due to meds, but has been going on for a long time now.

@LeaAnn
Are you still out there?

My Mother was diagnosed with Alzheimer's in 2011 & she has done fairly well living independently until 2015 arrived. On New Years Eve she called me complaining of severe upper abdominal pain, chest pain with her heart pounding & headache across her forehead. I rushed over to find her in her recliner, repeatedly saying she was sick, sick, sick & dying. This has been continuous since New Years. It has been such a sudden & drastic change in her behavior, unable to remember to take her meds, eat or drink. Just laying in her recliner all day complaining of pain, saying she has never ever been this sick & that she wishes she would just die. Mom is constantly asking the time, hoping it is bedtime. Strange thing about all of this, is that she sleeps all night, get up in the morning, gets dressed & makes her bed. Then she starts calling saying she is so sick with abdominal pain, nausea & a headache. She says she is dying. She's eating very little and forgets to drink fluids throughout the day. I'm constantly offering her food & fluids in which she may agree to a few bites & a sip or two of fluids or she may just refuse anything. We have been to see her PCP 3 times in the last month with multiple tests for heart & abdomen. While at the doctor during one of the visits she started complaining of chest pain with her heart racing & pounding. The Dr listen to her heart for a long time & tried to reassure her they her heart was beating 68 beats a minute and sounded healthy & strong. Much blood work, urinalysis, CT scan, KUB, chest X-ray & an upper endoscopy have been done. Only thing found has been a urinary tract infection & mild dehydration. She was treated with a 14 day Macrobid antibiotic for the urinary infection. Her confusing is rapidly increasing, she has had no fever with all of this. Her ability to take care of herself seems to have completely diminished except for her daily bed making & getting dressed in the morning. It is breaking my heart to see her suffering like. I know to her the pain is real in her own mind & I don't know how to help her. Some of you have mentioned fentanyl patches & low doses of pain meds. What are the names of the pain meds? She takes 0.5 mg of citalopram twice daily that seems to do nothing for her anxiety. She has been on Zoloft for a couple of weeks & again I see no effect from that. She has been on Protonix for a couple of weeks for the abdominal pain but again no relief. Can anyone of you out there suggest something else for me to do or should I now consider pain meds to her Dr?

My brother found this site and I am so happy he did! My wife, 67, has been an RN for 45 years. She had a small stroke in 2008 which led to the onset of vascular dementia six months later. She is under 3 month evaluations by a neurologist, who has her on Namenda XL once a day, citalopram, and quetiapine for anxiety 4 times a day. Within the last year, she started awakening at 4 a.m. with a stabbing, cramping pain in her perineal area. After ER visits, doctor visits (including gastrointerologist), many CT scans and xrays, multiple medications, and all kinds of homeopathic suggestion from well-meaning friends, her pain progressed to 5 to 6 times a day of bowel pain. Painkillers constipate her, trying to titrate the proper amount of Miralax/fiber tends to diarrhea. Now, the medical consensus is no pain meds, use simethicone, and continue the neuro meds, and ignore the pain. Hearing her cries of pain and for help is taking me to the breaking point. A colorectal surgeon prescribed Valium, which made her into a zombie, and made the use of Depends a necessity. I abandoned that course after two weeks. Reading the previous posts has given me new hope, and better equipped me to be her advocate. Thank you all!

Hello, my mother is almost 97 and is beginning to complain more about pain in her lower and middle back. I've been dealing with a torn rotator cuff, and when she found out about that, she began to complain about her own pain. She recently had an MRI that showed that her back hadn't deteriorated any since last year. I'm giving her pain medication, but I'm wondering about the timing of her pain. Any ideas?

On a lighter note, mom had pain in her side, and complained she was having a heart attack. Turned out, her bra was too tight.

I've read all the prior comments. No one has spoken of linking the "pains" with inconsistant medication administration. My mother with dementia insisted she could take meds on own, saying she "knows what she takes because she has taken them for years", etc. Problem is, once we moved her to assisted living and began medication administration by others they still did not confirm - by watching her take all the meds - until I discovered meds in her pockets and hiding places in her drawers! She was "saving them for later" for "when the pain gets bad". This was learned long-term memory behavior but short-term memory flawed. It meant that the meds were not being taken on time or properly dosed. Her dementia was getting the best of her. Two things worked, a small dosed Fentnyl patch, until she started pulling it off herself AND now finally all caregivers are watching her take all meds and so the meds are on time and the right dosages. ONE CAUTION: please be observant whenever your loved one has to move from say ALF to hospital to Rehab or NH. One place over-dosed mom on oxycodone because the night staff put on a high dose Fentnyl patch (which remained on till mom took it off herself three days later and asked "what's this?") and the next day they were giving oxycodon orally!!!! Soon after she had a bad reaction and now is allergic to the pain meds. A silver lining, now she is on a low dose type pain killer and it is regularly given by doctor's orders rather than prn (which mom would forget to ask for it). Now either her dementia allows her to forget the pain OR she is on the magic dosage. Bless all who have to be consistantly attentive to your loved one's care - stay the course. You are doing your best for them. I have found I am using a lot of the same skills I've learned while raising our handful of children. Yes mom is declining but I pray each day I do something well for her that helps, even if she doesn't know it. But please remember to take your oxygen first as if the plane is going down (from Dr. Laird's book) then you will be better prepared to help others.

annesabz I appreciate your response. Naturally my post does not apply in all cases. Knowing what I previously posted....One day my Mom's aid called me at work and said Mom was complaining of stomach pains. My Mom is not a complainer about physical pain. So I asked the aid to ask Mom to describe the pain, I knew she was seriously in distress by her tone of voice. So I said "ask her if she wants ice cream" Mom cried out "NOOO I just need to go to the DR." at that moment I knew it was serious. Long story short she was severely constipated. We spent several hours in the ER and went home and she didn't remember being there. This was caused by the medication backing her up. So I added more fiber to her diet.
I learned from that experience though, the Dr's had really no idea how to communicate with someone suffering with dementia.
I explained the Dementia issue and they still looked at her as if I were out of my mind because I was speaking/translating for her.
This is when I learned that talking to a general physical illness Dr about mental illness, is like expecting your plumber to give you answers about your hair care issues.

wuvsicecream Give a Hug: Yes--I absolutely agree with you. The problem is with her brain and not anywhere else. The pain signals are generated in the brain as a result of damage from dementia, just as visual and auditory hallucinations are common with some forms of dementia. Strangely, when we suggest this to her physician this is dismissed (even though my mother is 84). It's astounding to us. My mother has undergone a drastic change in personality and her ability to perform activities of daily living is diminishing; however, she speaks coherently. Because her language ability is relatively intact, the Dr.'s seem unwilling to say she even has cognitive impairment, let alone a dementing illness. Thank you very much for your comment.

My Mom has alzheimers and was bleeding to death for 6 months from taking Prodaxa and we didn't know a thing until she was septic and in shock. The pain was from bleeding to death, diverticulitis/diverticulosis and bleeding to death was never detected or caught i should say in any of the blood tests run during that six month period. I agree with everyone commenting on GI problems, these are often the cause of some major pain and can also produce signs of heart attack which we learned about back in September. If the person is diabetic, the diabetes can mask lots of different types of pain such as UTI Infection pain along with others. The pain is indeed real. Thrush is also a common ailment in the elderly with medications, especially high doses of antibiotics. Be patient and pay attention. At 80, we will not allow any procedure that will involve sedation. Too risky. Sometimes moving the patient around. Changing the type of bedding or padding on a chair will help. The weather has lots to do with pain. Movement, a person's touch and possibly shingles, I know I personally had shingles for three months before I finally went to the doctor to find out what was causing such excruciating pain. In all honesty, the PCP's don't catch things a specialist will. We are in debt to the Hematologist, the GI and the Cardiologist for catching a multitude of things that quite frankly were missed by the PCP either by not paying attention or the untrained eye. Hang in there. It's tough some days, we have to keep believing and keep trusting and making the best life we can for our parents. We will miss them and be lost without them.

annesabz You recently posted here and I noticed that this was originally asked by LeaAnn quite a while ago. My attention was drawn to this question because I knew a woman that had abdominal pain that was tested and tested but no explanation. She had no signs of dementia at that time. Later.... a few years had passed and she was diagnosed with Dementia and passed away due to Alzheimer's, years after that. Until she really had no communication ability, she continuously or chronically complained of this pain. I was reading something about symptoms, long before I found this site. This type of pain was a mentioned as a symptom of Alzheimer's but not in all cases. If I remember correctly it had something to do with the part of the brain that sends pain signals to
the nerves.
Kind of off the path but relevant here...I heard of a woman that had back pain walked hunch over and for years, prior to Alzheimer's. One day her son went to visit her, he did not recognize her because she was walking as straight as she was before the back pain. Her Alzheimer's seemed to have affected the brain in a way that the pain signals we not working as normal and signal wasn't happening as it should.
General speaking... I think we tend to forget that our brains have functions and do things that we take for granted. Our brains alert us of pain, release hormones to protect us from pain etc, when the brain is not functioning as normal due to dementia,of any type, these signals are possibly malfunctioning.
I guess what I am trying to say is, if all other tests are ruling out a cause for a change of the normal, such as a chronic complaint of pain, or change in behavior or personality, etc. occurs it could be a mental condition that is the cause.

Thanks capnhardass! (Cool name). I will ask her doctor about the fentanyl patch. It's got to be better than what's going on now. Thanks again.

pain meds are a drag. you become chemically dependant on them then they lose their effectiveness and begin causing pain. my mother has gotten off of the hydrocodone and hasnt complained of pain for a couple of months. she is on a low dose fentanyl patch but i know that the constant complaints of pain began to recede when she got off the hydro.. great strides are being realized in the field of addictions and docs are getting people off the pain meds in droves..

I have a very similar situation with my mother--but it has been going on for three years. She goes to the ER frequently complaining of abdominal pain (7 times in a 2 month period at one point). She has had five endoscopies, 2 CT scans and multiple chest/abdominal x-rays. That an all her blood tests and vital signs are completely normal. She takes hydrocodone three times a day and two different anxiety meds, plus ambien. Still the pain persists. She is in the hospital again now, and going through the same drill. I suspect she may be addicted to these meds, because she is requesting additional pain meds in the hospital, but they won't give them to her because she's maxed out. I suspect the problem is dementia, although her doctors continue to focus anywhere but her brain. It was comforting to read that you have experienced the same problem. We feel we are in a very difficult situation, because by allowing her to self-medicate, she is over-medicated to the point where she is almost bed-bound and losing her cognitive and functional abilities quickly. No matter how much gastrointestinal meds or pain/anxiety meds they give her, the pain remains constant, which doesn't make sense. We are at the end of our rope with her, and she is miserable.

Thank you for clearing up the misunderstanding Waddle I. I could not find this new information in the post I commented on that you said I misunderstood but it does make more sense now and I can only agree that anesthesia is harmful to the elderly and very young and even to healthy person 03% of the time. Again, truly sorry for your loss and sorry for the misunderstanding.

No worries, waddle1. I was interested in this because when my mom asked to have a colonoscopy her doctor told her that he was afraid that in her health condition that she might not wake up from the anesthesia.

menohardy...let me clear things up as I think you have misunderstood my previous post. I'm not saying, nor did the doctor say, my mother died in the hospital of congestive heart failure or due to the anesthesia. Her family doctor said they tend to give too much anesthesia to senior citizens and that is what caused the congestive heart failure, which landed my mother back in the hospital two weeks after the Endoscopy/Colonoscopy. She recovered from the congestive heart failure but had become weak during her stay in the hospital. The Hospitalist recommended rehab in a nh/rehab facility to regain her strength and provide care. That is where she died of "complications associated with dementia" (she stopped eating), 2 weeks later.

Sorry LeaAnn, I didn't intend for my post to take the focus away from your question but needed to respond to a misunderstanding.

jeannegibbs, I am not sure that would work with my mom, it might though. Some days it would work for sure but then she has a day where she is more her old self. I will keep that in mind. Thanks :)

LeaAnn, thank you for keeping us informed, and that does sound like hopeful news.

Regarding her wanting to see a doctor -- is her memory such that you can say, "yes, we will go this afternoon" and have her feel comforted? That wouldn't work with my husband's level of memory, but I wouldn't hesitate to use that approach if it would work.

Thank you all for your advice. The Carafate seems to be working, as she hasn't mentioned the stomach pain again since mid-last week. She still talks of wanting to see a doctor though almost everyday. She does see one quite often but she doesn't remember, of course. We have a palliative care nurse practitioner coming to see her tomorrow. I sure am glad I found this forum. It has been very informative and your replies to my question have been very helpful. I hope the week ahead is a good one for all of you and that you will have the strength and wisdom to face the tasks that lie ahead.