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WearyJanie Asked April 2023

How to handle Oxycodone in AL for mom with dementia?

Mom is in an AL facility, there now for about six weeks. For about eight years, she has taken oxycodone 3-4 times a day for severe spinal stenosis. Now she is not given a dose by the nurse unless she specifically complains of pain, and most often when the nurse or therapist asks if she is in pain mom will say, “no, I am fine.” Then after the nurse leaves, the complaining begins, with “pain that’s worse than it’s ever been.” Sister lives in the AL apartment with mom (a nice 2-bedroom) and has begun to complain of mom’s extreme irritability—they have days where mom is terribly mean and acts out towards sister.


 


I think that mom is essentially going into withdrawal when she goes a couple of days with no meds, because she does not say she is in pain. The nurse says she is only allowed to give the opiates “as needed” and if mom says she doesn’t need pain meds, then none are given.


 


This also happened in the hospital when mom had brain surgery. I stayed with mom the whole time, and assumed mom was on her regular schedule with all meds. Then terrible irritability began there too, and diarrhea, and the full-blown withdrawal before I realized they had cut her off her oxy cold turkey—when the nurse would check on mom, polite dementia mom would say she was fine. I did not understand until that happened that mom would have to explicitly ask for pain meds in order to be given her usual dose. I am shocked that the hospital didn't manage this issue better, especially with a patient with dementia.


 


Anyway, any tips? The nurse is not very keen on just giving mom the pain medication anyway, if she says she isn’t in pain. Shouldn’t SOME allowances be made for the dementia? I feel mom should have her usual 4 doses, as she was able to physically do more when not in pain l, and functioned overall so much better than now. But even if not all four doses, at least a couple doses daily to keep withdrawal symptoms away!! Seems like a no-brainer to me.


 


Mom and sister are fairly new there—maybe 6 weeks? Mom’s doctor will be the one in the facility, and she has only seen her once. So no track record there, only notes from the previous GP who retired a couple of months ago.

Midkid58 Apr 2023
I am personally thankful for my PCP who understands that the only way I can function through a day (chronic back issues) without 'the good stuff'. I take only what he prescribes and no more.

Not ironically, the person who FIRST put me on daily opioids (and I will admit I take the lowest dose of codiene I can get) many years ago.

With the pain pills that WORK....I can WORK. Without them, in a few days I am of no use to anyone.

Dr has said many times that the abusers are not scared off by the 'laws' at all. They still get their 'fixes'.

To take someone in chronic pain and deny them their pain relief is, to me, absolutely cruel.

The 'war on opioids' is a joke. The pendulum will swing the other way, eventually, allowing Drs to treat their patients with their best interests at heart.

MACinCT Apr 2023
It has become the new norm concerning opiates and rules, unless she is on hospice. Can you ask about transitioning to NSAIDS.
WearyJanie Apr 2023
I will—but she is already on heavy ibuprofen to compensate for a new lower dose prescribed since her GP retired a few months ago. Her dose was cut in half. It is hard to understand the lack of thought that seems to given to an individual’s situation. With pain, one size does not fit all.

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AlvaDeer Apr 2023
Have you written us about this before? I remember a similar post.

To withdraw someone without an MD specializing in withdrawal from this drug is very very dangerous.

You need to speak with the MD in charge.
WearyJanie Apr 2023
This is what I think too. In her state, Ohio, there is a big panic about opiates. The “answer” to the crisis seems to be to just stop giving them to patients. I may have written about my mom’s lifetime GP retiring, and the new “pain clinic” cutting her dose by more than half because “that’s all they prescribe to new patients.” No taper, and yes, there was significant withdrawal.

She’s 86, for heaven's sake.

We will talk to the doctor. But I am still upset that the doctor wasn’t actively managing this, or the nurse, without me having to intervene. Seems sometimes like the medical profession is falling apart.
WearyJanie Apr 2023
Thank you all—I will talk to the doctor. The nurse had sort of made it sound like this was an issue specific to opiates, and that by LAW it had to be done this way—though mom is ALLOWED to have up to four a day, as needed. And yes, dementia does indeed add a new wrinkle, and I feel like none of the doctors ever seem sensitive to special considerations dementia patients might require. But my info is second-hand through sister. I will try to talk to the doctor!

Geaton777 Apr 2023
Yes to having the doc change the prescription to specific dose/# of pills per times of day. We did this for my MIL's back pain from a broken back. Dementia changes one's abiliity to process pain or to judge when they should ask for the meds.

BarbBrooklyn Apr 2023
This happened with my mom in her NH; she was prescribed some med as "PRN"--which means basically as needed and when asked, mom always said no.

And then would complain to US about her anxiety.

We had the doctor change the prescription so that the med was regularly scheduled with EXTRA in case mom had breakthough anxiety about some particular event or issue.

The nurse can ONLY give what is prescribed. Talk to the doctor.

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