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

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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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Top Answer
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.
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.
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.

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.
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.
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.
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 : )
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)
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.
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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