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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 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.
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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.
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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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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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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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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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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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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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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.
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