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I am primary caregiver for my 86 year old mom. She has been complaining of abdominal pain for years, she has had numerous x-rays, scans etc. and they can find nothing wrong. This morning she was so distraught of because of the pain she wanted me to call an ambulance for her. She said If I wouldn't do it that I should call my oldest brother to see if he would. I drove her to the er. She got in right away and they did blood tests and x-ray but all was normal. Her blood pressure was high most likely due to pain and the emotional turmoil she was in. The were able to give her dilauded for the pain and it finally got under control. Most of the time we were there she was confused about where we were and why we were there. She didn't seem to remember that she had insisted on going.

She is on a regular schedule of pain medications which apparently do nothing for this specific pain. She has several health issues besides the dementia.

I have noticed that this seems to be worse for her in the morning and by noon she has usually settled down and doesn't mention it again until the next morning. I guess my main question is how can I talk her down (so to speak) when this inevitably happens again? She does not remember anything now about being at the hospital and we have only been home an hour.

I am trying to get her back on palliative care. She had been on hospice until early May when it looked like things were under control.

Anybody else out there dealing with something like this?

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I can tell you from experience that the pain is very real to the person suffering from it. When a doctor says it is all in his or her head I am always compelled to ask them: well, isn't the head attached to their body? Listen to the patient. There are many reasons why a patient can be in pain and the source of pain cannot be found until after an autopsy. Give the patient the benefit of the doubt. Fond out if you can detract them from their pain by giving them a massage or reading to or with them. Sometimes old age itself can be painful. Our plumbing doesn't work as well from inactivity. Laying in one spot can cause terrible joint pain. A hormone deficiency can cause the brain to stop producing natural pain killers. Even lack of sunlight can add to phantom pain and restlessness.
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Thank you menohardy, Her doctors have been very good about taking her pain seriously. She is on two strong painkillers. I plan to do my best to distract her when this happens again tomorrow morning. I am almost positive it will. She will be mad that I am not taking her to the ER. She does not remember being there today. We do have a palliative care nurse coming out next Monday so I am hoping that they will work with us to get things under control.
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Are any of her doctors gastroenterologists? As previously said, pain in the stomach cannot always be detected through x-rays or blood work. Problems in the esophogus or intenstines could be causing it. I have found the ER's to often be useless in diagnosing problems, particularly in the elderly. Also, this pain could be trapped gas which can be found through ultrasound. Think Gastro doctor is best bet, if you haven't already. Take care and hope she feels better soon.
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Very sorry to learn this. I do not know what the circumstances are so cannot comment except to say that the pain is real to her and sometimes nothing will help especially if she has developed a resistance to the medications she is currently on.
Lower GI tract problems over the bladder can be extremely painful. I am wondering if she is constipated from the opoids and or synthetic narcotics? I am not a physician but as a Medical assistant I can tell you a story about my own experience with a older man and he got relief by laying on a pilates ball-well inflated and slowly rocking him back and forth until the bowel gas expelled-Being very careful that he did not fall. He got to enjoy this exercise every day and it gave him much relief-be sure to ask her doctor. If the dementia is caused by the drugs have you let her see a palliative psychologist? It depends on the stage of dementia but a PHD Psychologist can do wonders-hypnosis-meditation. Your mother is very fortunate to have someone like you in her life-God Bless and may her suffering ease soon.
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Thank you all for your advice. Yes she has seen a gastroenterologist. She has had an endoscopy. She has had ultrasounds, MRI's and CT scans. The testing they did yesterday did not show any evidence of gas build up. The level of pain does not seem to increase when her stomach is pressed on. The current theory is that her stomach lining is inflamed because of her medications. We started giving her carafate last week. It may take 2 weeks for it to take effect.

The good news is that so far today she has been calm and not saying her stomach is hurting. And she hasn't said she wanted to die yet today, which I understand why she would say that, but it hurts to hear.
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Many things that cause pain do not necessarily show up on x-rays. I had sciatica years ago and still have severe shooting pains in my feet. If someone x-rayed me they would see nothing but the pain is very real. People who have had amputations have phantom pain which is very real but would not show up on tests, x-rays, etc. I had a relative who was in a wreck and for years has had whiplash pain which is agony but shows up on no tests. Trust that your mom knows she is in pain even if she does not know where she is or why she is there. I hope she will soon feel better. You are a real love for taking such good care of her.
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For dementia patients, the pain is 'real' whether it's physical or emotional. If a physical cause can't be found, or can't be cured, address the emotional pain. I'm always astounded at families that allow their loved one to be in constant pain or at a persistent, high level of anxiety because they don't want to 'drug' them. Or, they think the staff just wants to make their jobs easier. What the staff usually wants is not to spend their workdays watching someone they care for suffer needlessly!
Sorry, I know this isn't your situation, LeaAnn, but I needed to get that off my chest : )
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My 84 yr old mother with dementia also complained a lot about abdominal pain, and x-rays found nothing. This went on for weeks, months. It wasn't until trying to find the cause of chronic diarrhea and blood in the stool via a Colonoscopy & Endoscopy that a benign tumor was found in her intestine, which the doctor said would cause both the blood, diarrhea and the pain. She was given a drug to dissolve the tumor and a pain killer.

However, the story would be incomplete LeaAnn if I did not mention that those procedures involve anesthesia and some recovery which should raise concern, and evaluation, concerning any senior citizen, especially those in their 80's & 90's.
(My mother was back in the hospital 2 weeks after her Colonoscopy/Endoscopy due to conjestive heart failure caused, according to her MD, by the anesthesia.
She also became weak from the hospitalization and never recovered. FYI)
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First of all I am sorry to learn of your mothers passing. I find it hard to believe that an M.D would say definitively that someone at any age passed away because of anesthetics especially seeing that she had her endoscopy/colonoscopy and was released from Hospital but I'll take your word for it.
Before a endoscopy/colonoscopy we must sign a waiver and it clearly states that there is a 0.3% chance of death directly linked with the procedure. Anasthesia is risky for anyone and I agree that the elderly are at a higher risk. I would imagine that the drug used to dissolve the benign tumor also came with a warning label as all drugs do. Just the ordeal of going in the hospital , having blood drawn, taking the laxatives, all of these are stressors on the body as a whole and in combination could have caused your mom to pass. Again, very sorry for your loss.
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It sounds like you and her doctors are treating your mother with respect and dignity, LeaAnn, and taking her pain seriously. I hope you have success with your efforts to divert her attention, and that other medical approaches will help. This is very trying for you both, I am sure. She is very fortunate to have such a loving daughter.
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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.
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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.
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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 :)
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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.
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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.
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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.
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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.
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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..
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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?
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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!
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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?
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@LeaAnn
Are you still out there?
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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.
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