Is there anyway to know if pain is real or it is the dementia? - AgingCare.com

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