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My Mom is 83, has early stage dementia, and sees a pain management Dr. She says she has back pain for years and the Dr has prescribed Oxicodone. Pills ran out and she couldn't get an appt to see the Dr for 2 weeks. The 1st week she was asking for the pills everyday she said “I have to have my pain pills”. After a week she tapered off only asking every few days. Now 3 weeks later she isn’t asking at all. I’m wondering was she going through withdrawals or really in pain?? Due to dementia, it’s hard to believe her. I think out of habit she wants the pain pills.

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You know your mother best. Can she verbalize her needs? If yes and she is no longer asking for pain meds, then most likely she is not in pain. You indicate "early stage dementia". Our mother was there about 3+ years ago. She was quite able to express her needs/wants and STILL IS at 95. 2 years ago we had to move her to MC due to short term memory loss (resulted in poor choices, unable to manage finances, unable to cook foods, resorted to microwave and packaged foods, etc.) Just before the move she injured her leg and wasn't even smart enough to let one of us know or get help, just told the neighbor she bruised her leg and neighbor told me. Cellulitis!

Anyway, a few months ago the staff reported mom was in a lot of pain (legs, mostly left side.) She already had Tylenol as needed (she asks for it or they might suggest it if they could tell she needed some.) Doctor office was not very responsive and made appointment for many days later. This was enough pain that she refused to get up, would not walk or shower, had to be wheeled to meals, and sometimes refused meals because she was in too much pain. I took her to ER and wish I had recorded some of that 4+ hours we were there for the doctor. On arrival either ER or doc office, she will deny pain, but trying to get her to do anything, OHHHHH pain. Doctor had the gall to tell ME that dementia patients often cannot express their pain! Wow - 4 hours of her NOT expressing her pain. I call BS on that! Despite moving down memory lane (over a year ago she forgot about her condo, recalls previous home sold 24 years ago and asks about her mother all the time now), and couldn't tell you what day it is, she is self aware. She may have memory loss doc, but she is NOT brain dead! Mom can still self care (except during the pain episode) AND can express when she is not feeling well. If your mom is only in early stage dementia, she can probably express needs, including pain meds.

So again, you know your mom the best. IF there are no real signs of pain or complaints from her, I would say let it go - she is "off" the drug now, which is probably for the best. I am a proponent of less (or none) is better - some meds, like insulin brought up by someone or BP meds like mom takes are a necessary evil as eliminating those will bring on problems.

I can certainly sympathize with those of you who are dealing with chronic pain and take medication - I have had 3 cervical discs removed/fused, have a lower back vertabrae that slip out of place (not the disc, the vertabrae!) and have to be VERY careful about what I do and don't do, but by choice I don't want to go down the meds path (BTW, most of the narcotics they tried on me did NOT work.) Currently I take 2 aspirin in the morning, once in a while 2 later in the day if needed, but not very often. So, I am NOT lecturing everyone to stay off drugs, just saying if possible avoid them and in this mom's case it sounds like it had become more of a habit to take them than an actual need.

Yes, sometimes pain meds can be a necessary evil, but again, if mom does not appear to be in pain, is able to move about and do what she was doing before while on the meds and is no longer asking for them, then it is best left alone. Try OTC meds (or even a placebo) if she expresses need for something and see how it goes. When our mom was in such great pain, all THIS doctor prescribed was MORE Tylenol AND Ibuprofen! I was not looking for pain meds for mom, I was seeking a CAUSE and then how best to treat it. I suspect it was her knee(s). She had said many times in the past she would need to get her knees "done", but never did it. I finally got her to Ortho (pain was gone by then) who took Xrays and said if she were 20 years younger, he'd recommend surgery! I asked for an injection, as a preventative. No pain meds. 2 months later ask her about legs, they are fine.
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Reply to disgustedtoo
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You don't make the decision to stop the oxycodone; the doctor does.
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Reply to Llamalover47
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I’m new to this site but have read many responses, none of which raised my ire like the two from Jasmina. Before she answers another persons cry for help I hope she has her compassion levels checked. She’s on empty! This is a site for us to help one another and we can’t do that with the venom that laced her “advice”. Hang in there, hon, and don’t let people like her get to you.
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Jasmina Feb 7, 2019
Not venom, common sense.
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This is absolutely a call for her Pain Management Doctor to make. He is responsible for her. You shouldn’t change his orders without his consent. You can explain what’s been happening and see what he wants to do though. Maybe he’ll change it to a lower dose, or less frequently, or a different med. But she has a history of pain that would not just magically go away.
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Jasmina Feb 7, 2019
Exactly!
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I feel sorry for a person with dementia that has to ask for mrds. If she had diabetes would you withhold checking her sugars and giving insulin? No you wouldnt. What medical or nursing degree do you have to withold it?
If you just call the doc he/she will tell you its ok, or -Ive seen her exrays. She's got crumbling bones dont stop the medication.
An armchair doc shouldnt be guessing. A phone call isnt that hard to make. Doctors now have to justify why a patient is on a certain class medication. Its not just given willy nilly to shut the patient up. You could actually get in trouble for withholding medication. She wasnt monitored for withdrawls. I guess everyone is smarter rhan a doctor.
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worriedinCali Feb 5, 2019
No one here is saying or acting like they are smarter than a doctor. You can not compare insulin to a NARCOTIC! This is nowhere near the same thing as giving a diabetic their insulin.
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My mother was seriously addicted to pain meds, benzos, barbiturates and amphetamines for 40+ years--before the opioid "crisis". She was so stoned all the time, it was hard for her to do anything. I know she took WAY too many and had several doctors prescribing them. I really didn't think much of it. That was just mom.

After her last hip surgery, they had her on Ultram, which I had always felt was pretty weak sauce, pain med wise, but she went kooky on them. Falling all the time, acting demented& hallucinating--they took her off those and she was fine. She actually really doesn't complain of pain. All she can have now is Tylenol, her liver and kidneys are shot. I don't know why, when you'd think pain would be a real issue, due to age and osteoporosis, etc., that NOW is when she'd need something for pain, but she doesn't seem to.

I was with her as she supposedly de-toxed from oxycodone & Valium and she had zero side effects.

Life is funny--I have chronic back pain that 2 back surgeries have "helped" but not "cured". My PCP has been a good sport to let me have x number of Tylenol #4 but it just takes the edge off. I'm in pain 24/7. I can't go "up" in dosage or type of drug, in fact, last checkup my doc said he wants me to start weaning off the meds. If something else worked, you better believe I'd do it. I'm pre-emptively terrified of the constant unrelenting pain that will come. I can bend over and touch the floor, I can walk (well, when my broken foot has healed I can walk) for miles, I am 100% "fine"---but to be able to have a quality of life--I do need something for pain. Ibuprofen is off the table--stomach issues.

I wouldn't give your mom anything she didn't ask for. Often when people get very old, the synapses in their brain simply don't fire the same-they no longer feel pain--or they feel pain that isn't there, or is not that bad--but I will never judge another person's pain level.

The idea to take her BP if she seems uncomfortable is a good one. When I am in real pain, my BP will raise to 160/100 or so--normal for me is 90/60.

And some people have incredible tolerances for pain. I'm not one of those, much as I may wish for it.

Life has a way of karmically biting us in the tush--don't be hard on mom if she needs relief from pain. Tomorrow, that could be you. Just sayin'.
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Reply to Midkid58
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ToskaBlue1957 Feb 9, 2019
Wow, your journey with your mom sounds so much like mine. My mom has been on opiates for 40+ years. Her family doctor got her started on Darvon, years ago before they took it off the market because people were overdosing. He then switched her to Vicodin. She has been on the highest dose for 3 years now. Twice in the last year she has almost overdosed.

She had her left leg amputated above the knee 10 years ago due to PAD. Now she has phantom pain to deal with, which is not chronic, but to her, it is devastating. She was 75 years old at the time of the amputation, and from what I've read, the longer you've had the limb, the more the brain recalls it being there, and the stronger the phantom pain.

Most recently, at the end of January 2019, I found her in her apartment, passed out, slumped over the kitchen counter. When I roused her I realized something horrible was happening to her. Yep, she was overdosing. However, even as much as I spread the word about the Vicodin in the ER and once they admitted her, in the end, her discharge papers said "severe confusion and hallucinations". I did notify the prescribing doctor and he will no longer be prescribing the Vicodin and wants to move her slowly to medical marijuana. She and I are both agreeable to this, but she doesn't yet know that there Vicodin well has run dry.

On the plus side, in the past 2 weeks since discharged, she is more perky than usual. Not necessarily like her old self, but like a rejuvenated version of the previous self. And it's really refreshing and reassuring to see!

As the main caregiver for my mother, I appreciate this opportunity to vent. This forum is a good place for it. I feel better already.

Thanks Midkid, and everyone else here. We're all in similar circumstances and feel the need for the companionship.
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Certain pain meds. Need to be cut back gradually. You must ask her Dr.
first. As many have already said, you can’t hide severe pain.
Hope you’re able to resolve this soon so your mother is comfortable and you’re sure you’re doing the correct thing.
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Reply to ConnieMH71
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So, how is she now?

I don't think you can rely on her reporting pain in the ordinary way: she may feel it without being able to express it.

So check for other signs. Is she as mobile as normal? Do you see any changes in expression, grimaces, does she shift around trying to get comfortable? When you move her, does she resist certain changes of position, or anything like that?

If there is absolutely no sign of anything wrong and she has got out of the habit of taking her oxycodone, then it's not so much that she doesn't really need the pain relief as that there doesn't seem any point in giving it to her. But do not make this decision on your own: consult her doctor, and perhaps keep her next px on standby in case.
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Reply to Countrymouse
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If she's not asking, I wouldn't give them to her.

Look for signs that she may be in pain (wincing, moving her body in a protective way...) if there aren't any significant signs, then good. She's successfully weaned off of a very powerful and addictive drug and, as a side benefit, she has a MUCH lower risk of falling. (Seniors on opioids are 7 times more likely to fall.)

When she asks for something for pain, try Tylenol first.
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Reply to IsntEasy
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She’s 83. She has dementia. Talk to her doctor. I would not be concerned about being dependent. If she’s in pain. She’s in pain. Do NOT quit her cold turkey.
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Reply to Jbkrek
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So you only gave her her pain pills when she asked? Is that the way it was prescribed? For pain as needed? If someone isnt in that much pain, I dont think they would prescribe oxi.
Id call the doc and explain the situation. Im sure the doc would want to know if a patient was being weened off a drug he/she prescribed. That could have been dangerous doing it that way. Obviously if she couldnt tell you she was in withdrawls, how can she tell you she is in pain?
Are you trying to ween her off the drug on purpose?
Oxi is not dangerous when taken as prescribed by a doctor. I dont think it is wise to decide to take someone off a drug when you are not a medical professional. Im glad your not in charge of pts at a facility. No one gets any meds bc they didnt ask. She has dementia!
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Reply to Jasmina
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Hi there!

The most knowledgeable person to ask is your mom’s doctor. However, I’ll relate something my mom went through w/Percocet. She’s 90 and was taking that drug for years for insanely horrible knee & back pain. She only ever took it as prescribed but not even as many as allowed per day. After she had been taking Percocet for several years she started having sporadic falls. It took us a long time to come up w/the pills being the problem because; 1) she had been taking them for such a long time, 2) she never felt dizzy or unbalanced before a fall and 3) we thought she was just in too much of a hurry moving around right before she fell. My sister always blamed that drug. So, we talked to her doctor & he did say the falls could be from the drug even if she didn’t show any of the above mentioned incidents. He switched her to Tylenol 3 and she hadn’t fallen since and that was almost 2 years ago.

Anyway, having related that, like I wrote above, please talk to her doctor. If your mom isn’t complaining of pain then I wouldn’t think to give her any meds. The drug your mom had been taking is a pretty potent pain med. Perhaps her doc could prescribe something else for you to have on hand but only give to her when she’s actually in pain. I can’t stand to see my mom in pain and am the one who encourages her to take a pain pill when she says she’s hurting. That’s why I suggest you have something in hand if she needs relief.

Good of luck and I hope you find something that’ll work!

Lynn
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Reply to heysilky
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I would visit a geriatric specialist or a neurologist before going to a pain doctor again. Actually, I would not take someone with dementia to a pain doc. Doc may think that you are the one wanting the pills, so he gives them to Mom who qualifies.
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Reply to surprise
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Wow, 83 and taking that drug!

Oxycodone has a risk for abuse and addiction, which can lead to overdose and death. Oxycodone may also cause severe, possibly fatal, breathing problems.

You will be able to tell when someone is in pain. Their face is usually a tell-all; grimacing in pain, even if she can't communicate well.

I would try to get her OFF of it. She may not have back pain and it's just addiction at this point....

All the best to you and mom!
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Reply to Savitaa
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Fill this Prescription if all Possible Here, dear, And Keep them on Hand. When she Complains or even makes a face, Or uses Body Language, Which no matter who it is, They will, Then you will Know how that Goes.
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Reply to Parise
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early stages of dementia she should be able to tell you she is in pain. Actually pain medication--any narcotic--will increase the likelihood of FALLS and constipation will become a severe issue. Administration of narcotics and psychotropics are also linked to increased risk of dementia and Alzheimer's and a more rapid *decline*. www.ebm.bmj.com/content/18/5/e50
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Reply to cetude
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It does sound like she is through the worst of the drug withdrawal, but she may still be in pain too, and yet no longer be able to voice her pain level and the need for pain relief to you in the usual way. You Really need to be discussing this with he Pain Dr, for sure! There may be other medications that are more appropriate for her now, but she should have access to proper pain relief, you might need to find a better way to access her symptoms if she is unable to verbalize it. Ask the Dr what is best, but do i insist on proper relief, pain sucks!
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Reply to staceyb
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Check her blood pressure. If Mom is in pain it will be elevated. My nephew has an extremely high threshold for pain. The only way the nurses knew he was in pain from a back operation was checking his blood pressure.
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Reply to JoAnn29
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If she isn’t asking for them I’d be inclined to just let it lay.

However - I would suggest two “safeguards” to ensure this is the
right choice:

First - is she able to accurately assess and communicate her needs in other areas such as hunger, thirst, bathroom needs, etc?

And -

Based in your own observations - is she able to move about as freely as she had previously on the pain meds? Is she grimacing or wincing when she gets up and down?

Dont let the Oxy Hysteria keep
you from allowing your mother relief from actual pain.

AND - I say this as a daughter who watched my mother abuse Oxycodone for years. But, living with chronic pain needlessly - when relief is available - is just a miserable way to have to exist.
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Reply to Rainmom
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If she isn't in pain, then why would you give her pain meds?
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Reply to needtowashhair
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What was the diagnosis for which she was given pain meds? Beyond back pain? What kind of back pain? What backs it up?
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Reply to Segoline
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I wouldn't be giving her pain medication unless she specifically says she's in pain and needs them. There are too many potential complications associated with oxicodone to give them to your Mom if they're not warranted.

Best of luck!
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