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Pain management issues
I am trying to figure out pain management for my mom, and I just have no idea what to do. I apologize - this is going to be kind of a long post…
My mom had lower back spinal fusion surgery around 2007 because she had herniated discs and even had a rupture, if I remember correctly. The surgery did not turn out to be very helpful and she had considerable pain and mobility issues after that. She was prescribed a pretty high dosage of narcotic pain medication for it, and was on that for a number of years. She eventually tapered back to about 2 pills per day, which seemed to be the minimum for her to be able to move during the day and sleep at night. Abuse of the medication was never a problem. I moved her in with me in Florida in 2015, and she was still on narcotics. We quickly discovered that she had to be seen by a pain clinic once per month to be able to continue her prescription. There were times when her pain increased a lot and she was given injections too. I don’t know what her pain tolerance is, but she often rated her pain level fairly high.
Her dementia became too severe for home care in mid-2017 and she went into a nursing home nearby. I communicated her medical/surgical history and was able to provide the references for the pain clinic, and since the nursing home could give her the meds on schedule, she didn’t have to go to the clinic anymore. Then unbeknownst to me, the Florida legislature passed a bill in July 2018 that makes it much more difficult for facilities to prescribe narcotics to their patients, so she was taken off of her pain medication. I did not know about it until December, when during a quarterly care meeting, they were naming the medications she is currently on and I just happened to notice that they did not mention her pain medication. I asked about it, and it was not on her list. Then someone on staff remembered the new law and said they had essentially had to take everyone there off of narcotics. I spoke to her doctor on the phone and he said that he is not allowed to prescribe more then 3 days worth of narcotics, or up to 7 days worth in acute cases, or he could lose his medical license. He also kind of lectured me that elderly dementia patients shouldn’t be on it anyway. I said, “Well, what if they have severe chronic pain and are suffering?” He reiterated that they should not be on it. I found that frustrating because quite honestly, at this point it’s more or less palliative care even though my mom isn’t yet at the end of stage. I just want her to be as comfortable as possible. So I asked what else we could do, and the only option was a pain consultation at a pain clinic. I said, “She can’t answer any questions and she is not going to be able to evaluate her pain on a scale like they ask. How will they evaluate her?” They assured me that they would look for non-verbal cues and things like that. I told them to go ahead and schedule it.
We had the evaluation and the people at the pain clinic clearly had no experience in dealing with someone with severe dementia. They handed me a cup for a urine sample from her, and I said, “Uh yeah… she is incontinent and is not going to be able to do this.” They said, “Oh, we’ll just put a plastic catcher on the toilet then.” I said, “No, you don’t understand. She wears a diaper. She can’t follow directions. She can’t go on demand. I can’t even physically get her on a toilet by myself even if she could. Is there some other way? She cannot provide a urine sample for you.” They said they could do a saliva sample, so they did that. Then the physician’s assistant brought us into a room and I explained again that she has pretty severe dementia, but also has long term chronic pain and that I wanted to get an evaluation to see if she needs the narcotics or not. He asked her a few questions, but she is not really able to communicate - she doesn’t seem to understand what you say to her, and her answers are rarely anything coherent. He didn’t really do any evaluation beyond that at all. He just wrote the prescription. Then I asked how often she would need to come back, and he said “every 30 days for that to continue.”
Back at the nursing home, I expressed that I did not know what to do - she can’t tell me her level of pain or discomfort, and I don’t know if she’s doing OK without the narcotics or not. I don’t know if her mental deterioration could make her sensitivity to pain different from what it was before. She can get the medication at the pain clinic, but it’s a lot to deal with - the facility has to take 2 staff members, drive her across town (because she’s in a wheelchair), I have to take off work and go meet them there and try to speak for her, even though I have no idea how she’s feeling because she can’t tell me. She seemed a little freaked out by the drive because she is not in touch with reality and can’t really understand what is going on around her. So I don’t know if it’s worth it to put her through all that every 30 days, or if she’s doing OK without the narcotics at this point. It’s also going to be harder on her as she physically deteriorates, which is happening fairly quickly.
Neither the social worker or the medical staff seem to know what to tell me, and say it’s really up to me. So I’m stuck with deciding whether to traumatize her each month with a drive across town that seemed to freak her out, or to discontinue the narcotics and hope she’s not being tortured with pain in addition to everything else she’s suffering (hallucinations, loss of cognition, loss of physical control). I did ask the social worker to look into whether or not it could fall under “palliative care” and he said he would, but we think she would have to under hospice care for that, and she’s probably not at that point yet. He’s looking into it.
So I don’t know what to do. Anybody else had any experience with this sort of thing? Any ideas?
Unless she was clearly evidencing pain(crying, writhing, wincing, etc). I would not give the pain meds + see how she does. Her brain is being affected + it is my belief that their pain receptors can be affected also.
My mom has had upper back pain for YEARS + medicated for it, but since she started to refuse to take all meds about 5 weeks ago, I cannot detect that she is any worse off pain wise than when she took the pain meds.
I also would have her evaluated for hospice. If they feel she is in pain, they can prescribe without her going in(at least in the states I have dealt with)
Thank you for your advice @terei. I was thinking that may be the case, and she really didn't exhibit those behaviors like she was in distress - in fact, I hadn't realized in 5 months' time that she was off the meds. She will occasionally rub her hands and say they hurt (arthritis), but other than that she has seemed OK. She seems to sleep a lot more in the last few months, and I think that would be hard to do if she was in agonizing pain too. Maybe her pain receptors deteriorating are the one blessing in all of this!
I will ask again about a hospice evaluation, in case that would be helpful, but I do suspect that they'll decide she's not ready for that yet. Worth a try though.
You are a very loving and caring daughter who is doing her very best in a difficult situation. Of course you do not want your mother to suffer, but you also do not want to see her medicated unnecessarily and do not want to put her through a difficult trip to a pain clinic each month; that is totally understandable.
Is your mother grimacing, moaning, rocking, physically withdrawing parts of the body or withdrawing socially if she has been social, is she is having changes in behaviors to the negative side of the ledger, no longer eating, etc.; all of that is part of trying to assess what is happening and to what degree.
Sometimes, when a patient is not assessed adequately for pain, healthcare providers can unfortunately mistakenly attribute changes to other factors and order medications which are not necessary, so adequate assessment is very important.
First, one does not want the person suffering pain needlessly, and if the behavior is to withdraw, a provider may think the patient is experiencing depression and an antidepressant may mistakenly be ordered. If the person is exhibiting acting out behavior in response to their pain, if assessment is not adequate, there is even the possibility that an antipsychotic may be ordered, so assessment is very important but sadly often missed. The following links will bring you to some information regarding assessment of pain.
The Abbey Pain Scale by the way is a good and useful tool and there are even assessment forms included for use by staff - BUT this would take cooperation of the NH staff; if you want to use something like this, you may have to advocate for it.
I like the Abbey Pain Scale because it not only assists in knowing pain is present, but to what degree so the patient does not get over medicated.
Let us know how things are going, we will be thinking of you and hoping all goes well.
Do push for a hospice evaluation. Most hospices no longer follow that “6months to live” guide, especially with dementia patients. Many people do not realize that and miss out on hospice services they could have had much earlier.
Hospice (all those I dealt with in 2 states) are outstanding, MUCH better than docs, for pain relief and palliative care. They want people to be comfortable.
As an aside, FL laws are so strict, as you found, and docs are so afraid of losing their license and DEA checks (an investigation is a major deal, regardless of propriety or outcome) they simply refuse to prescribe and make you go to PM clinics, which also face huge state restrictions and requirements.
Dementia patients are viewed as collateral damage. It’s horrible. I never would have imagined docs would be like that—they’re refusing pain relief for terminal cancer patients, and major surgeries, not to mention bedbound dementia, all citing fear of addiction. BS. They’re afraid of legal problems (valid but still. They could at least be honest with everyone). Hospice is often they only source of relief, if you can get your LO in.
My mom is still in independent living with a great deal of care from me. I just got her on Medical Marijuana a few weeks ago. This has been much better than opiates. My mom previously broke a hip and 2 vertebra in her back. She lives with chronic pain.
She was nervous about getting on MM, but wanted to try it. Now she is a raging fan. It does not make her high or euphoric in any way, only helps her pain & anxiety. It is easier to manage than a pain clinic. I take her her to the dispensary to get her meds and worked with the pharmacist there to get her dose correct.
Good Luck to you.
morbik, i feel your pain. My mom, age 80, non-dementia has been on Rx narcotics for 30-40 years or more (she had spinal surgery 40 years ago where she first started pain meds, then lymphoma 12 years ago where dosage was upped and upped and upped) . She was on as high a dose as 9 oxycodone, 9 soma (muscle relaxer), and 3 xanax a day a few years ago when I moved closer to her and my father (and some months she still ran out early as she abused taking them). She basically slept all day, although she denies it. Where was this concern for addiction back then, why did it take so long for doctors to catch on to it being addicted. It has taken 3 years but my mom is on only 3 oxycodone a day and 3 xanax. This with her being non-dementia and still ambulatory but me having to drive her across town each month for the required doctor visit. I would like to get her off of them also because she is still addicted as she watches the clock for her next dosage. Hers is not a pain problem (but she will say she is in pain even cry at times but the pain is in different spots when asked on different days) but an addiction problem. Her physicians here in Texas are quite happy to leave her on this Rx, I guess it is okay in Texas right now as we no longer have to go into his office each month but we do have to call every month a week before it is due to get a refill. I am also somewhat content to leave her on this small amount. But I still have to keep her drugs locked up and dispensed in an electronic pill dispenser that opens up at the time they are to be taken.
I feel for you and your mom, though, when dealing with pain and late stage dementia or other chronic pain, I have no problem with giving them pain meds regularly, why not in their last years be comfortable. With dementia, it is so difficult to know they are in pain, like a toddler, that can't tell you what hurts or where but we have to just watch their behavior. My DH still verbalizes when his head hurts and will hold it or rub his forehead and it hurts me to see him in pain.
Unfortunately, I have no answers for you as you are dealing with an addictive drug, facility, doctor and government regulations which is a big battle. Good job on getting your mom down to only 2 a day as I know this was also a big battle. If it was my mom and she wasn't showing obvious signs of pain, I would leave her off of them, though be prepared for a time period of withdrawals physically and mentally, which for my mom is harder than the physical. If she stubs her toe she will want a pain pill! There are other meds that can help with sleeping if that is a problem also. Good luck.
Thank you for that info, @Jo C.! What you’re saying about assessment makes total sense, especially the non-verbal part. I think for her, I will need to rely on the NH staff to observe behaviors like eating and sleeping, and I can print out those PDFs and talk it over with her unit manager. Other than eating and sleeping habits, it’s very difficult to read my mom’s behavior. She has mixed dementia and has suffered from some pretty extreme delusions and hallucinations for a long time. She is already on antidepressants and antipsychotics because she has had wild emotional swings and is sometimes combative. She isn’t very social because she can’t seem to recognize or relate to things that are right in front of her. What she sees and what is actually around her are completely different things, and her reality seems to shift constantly too, so it’s very hard to try to join her in whatever world she is in because you can never figure out where it is. She has become increasingly less verbal over the last several months, and will mostly speak in little sentence fragments that are almost impossible to catch or understand. If I pick up on some part of it or ask her to repeat something, she doesn’t engage. It’s like she’s tuned to a different frequency. Or she’ll respond as if I’ve said something, when I haven’t said anything at all. Sometimes her face will change when I’m sitting with her, like an infant’s expression shifts. She might grimace or wince, and if I say, “does something hurt? are in you in pain?” she’ll look at me like she just realized I was there and smile and not seem to be in pain at all, or she’ll mumble a sentence fragment from something unrelated, or she’ll reach down for her dog (who isn’t there with her, but she hallucinates about that all the time) and seem to feel OK. So as you can imagine, figuring out what things are a result of her decline both mentally and physically, and what’s caused by pain, mood swings, or delusions on any given day is a real challenge. As I mentioned, she has sometimes rubbed her hands together and said they hurt (probably from her arthritis and happens mostly on cold or damp days), but that's about the most coherent feedback I'm ever able to get from her.
I completely agree about the legal liability @Rescue mom, and I get it, I really do. But the endless challenge it’s been since we moved her here is crazy. I’ve been treated very rudely by pharmacists a few times and had to jump through hoops with pain clinics and doctors. I get that opioid addiction is a national crisis, but gee, I’m only trying to help my poor mom have some comfort. I never imagined it would be so difficult. And the consensus seems to be that legislation like this does little to get opioids off the street, while hurting the people who really need it. It’s very frustrating.
I wondered about medical marijuana as well @Sjodry. Florida voted that in, in 2016 by a big margin and I had hoped we could try that for her, but by the time the state stopped dragging their feet about establishing dispensaries, my mom had already declined to such a state that she couldn’t stay in my home anymore. I wonder how that works with a NH, and if they would be able to try it there. Nobody has mentioned it to me as an option, but I can ask about it, or maybe it could be done in conjunction with hospice.
And thank you @VRAAB - you definitely understand the challenges we’re facing.
This is all regarding FL, different states have different laws.
THEN as you know, many pharmacies refuse to fill PM scrips and/or treat people with legit PM scrips like criminals.
I would have never dreamed 20 years ago that getting relief for a medically recognized problem, that docs agree causes great pain, would be so difficult. But now so many people—cancer patients, dementia, bedbound elderly, even terminally ill— all suffering because of these new cookie-cutter laws.
It’s beyond frustrating, it’s insane and cruel. And it doesn’t address the real problem but f illegal street drugs.
I know trying to deal with pain in elderly with dementia is a heartache and has unique difficulties.
I'm very relieved - I was able to make some progress.
I went in on Monday and talked to the unit manager about my concerns (trauma of outside appointments vs. needing the pain relief). She asked one of the nurses if she had seen my mom exhibiting pain non-verbally and the nurse confirmed that yes, she does do that, especially in the morning. I suggested what I had previously mentioned to the social worker, that maybe at this point, could it be considered palliative care that hospice could help us with? She said we could schedule an evaluation to look into that. We had the evaluation today and the hospice person was so nice. I explained what's been going on and she reviewed her records and asked some questions about her decline in recent months, then she told me that she does feel my mom qualifies for hospice care and that they will be able to manage her pain medications, so Mom won't have to be transported across town to get them. I think hospice will be very helpful, especially because while I feel her NH does a pretty good job, they still have a lot of patients to manage and it could be easy to miss or overlook my mom's needs, especially as she becomes less and less verbal. Having some extra assistance from people whose job it is to make her more comfortable is going to be a huge help to her and to my peace of mind.
Thank you all for the advice - it was a big help in getting this figured out!