First flicker of concern

M1

So....for the most part things at the new MC facility have been much, much improved. Communication much better, she is at least accepting my visits and not all over me about leaving at every turn. So far, so good. But: and this may end up being a big but. She has been on chronic pain management for her terrible back for over ten years. For years and years and years, we went to monthly appointments at a pain clinic, and the docs there called her their poster child for how to handle chronic pain managment correctly. She has had five spine surgeries. The last in 2018 was complicated by a bad wound infection, but ultimately did her a lot of good and cut her need for narcotics by about half.

For unrelated reasons, her pain management clinic closed in 2020, and at that point her long-term rheumatologist was willing to prescribe for her. He did not want to continue when she went to MC last year, and the other facility just prescribed for her, no problem. Over the year there we experimented with decreasing her doses unsuccessfully, so we ended up back on the same doses she's been taking since 2018. The new facility has known this and did not indicate that it would be a problem.

But now all of a sudden, I'm told it's a problem. Their overseeing doc is unwilling to prescribe and wants her to go back to a pain clinic. And I'm saying--for what purpose? She's not going to know or be able to provide any relevant history. I have an appointment for next week (because of course I'm going to jump through any hoop they tell me to), but I can't imagine what it's going to accomplish. I talked to the director of nursing today--she was unaware I had been asked to do this, and agrees with me that it's unnecessary. I'm very fearful of getting caught in a prescribing loop and trying to figure out what to do. The overseeing doc is supposed to call me on Friday. I'm having a hard time believing she's their only non-Hospice patient to be on chronic pain meds. I don't know quite what to do. I can't see schlepping her all over town once a month for someone to write a narcotic prescription. I'm very familiar with how tight the restrictions are these days, but am just hoping this does not end up being a deal-breaker of some sort. How could they not have cleared this with their medical team on the front end?

Dio

M1, gosh, it's another bump in the road you don't need. Does your wife have a primary care doctor? If not, then hopefully the overseeing doc will be more reasonable after you talk to him. Good luck!

jfkoc

It has always been my understanding that one could keep their PCP.

I think it quite possible that the Dr in question is simply not comfortable with pain meds. It is also quite possible that the Dr does not understand that much of what a pain clinic does will be impossible to be of any benefit to your partner.

Have the discussion, ask a lot of questions and then go from there. I feel certain you will be able to find someone to prescribe the needed drugs and maybe you can find someone who suggests medical marijuana. Seems most of the Drs here are looking seriously at that alternative.

After thought....what about finding a neurologist who specializes in dementia? They might be the answer and you will likely need one on your team.

M1

Her pcp retired last year and was never involved in the narcotic prescribing. So no, there is no one else. To me this is part and parcel of palliative care. Though I guarantee she does not qualify for hospice currently.

Ed1937

Nothing is ever perfect, is it? Definitely ask a lot of questions when you talk to the doc. Like Dio said, maybe they'll come around after talking to you.

Quilting brings calm

Does the doctor not know her long term use of the drug and the fact that it was decided upon by a pain clinic? Maybe he doesn’t realize that, and thinks she’s never been to a pain clinic.

60 falcon

M1, maybe consider finding a palliative care doctor. The healthcare system my wife and I used had a palliative care doc who did nothing else. For us, he was fantastic, all about comfort care. That doctor was a blessing for us! She was able to stay on all of her meds as long as they provided her with comfort considering the discomfort she would've experienced if she would have stopped them. My wife also had chronic back pain, but not as bad as you describe. Towards the end of my wife's life, the doc provided whatever drugs were necessary to keep her comfortable. Very much like hospice, but not.

Personal rant: Alz/dementia sucks and so does pain. It really ticks me off that people who truly need pain meds are having a difficult time receiving them all because of people who abused the healthcare system. It's just wrong. Rant over.

An interesting thing about my wife's bad back pain... Several months before she passed, the pain either subsided or that switch in her brain turn off. I don't know why or how, but she didn't even have nonverbal signs of back pain. Very strange. I hope you figure something out.

harshedbuzz

I can absolutely understand how you have found yourself in this situation. I don't have to tell you there is oversight regarding the amounts of these kinds of medications.

In your shoes, I would call the rheumatologist and work out a plan to take over prescribing. Perhaps you could do 2 or 4 visits a year using a medical transport service. We did this when we decided to continue dad's ADT in the MCF. It was super frustrating that the geriatric doc wouldn't administer the medication twice yearly on his rounds, but it was what it was. We hired a van to deliver him to the office and return him to the facility and met him at the office because he couldn't give history either. Mostly he angled for the return of his drivers license.

Another consideration, specific to having someone with pain issues who is not 24/7 in your care, would be that maybe the prescriber would want to do the standard drug screen to verify that their medication is being taken as prescribed and only their medication is being taken as prescribed. I know my mom's pain doc does this at every appointment. You'd want to know if someone is not distributing the meds as prescribed for some reason (like they can sell them) or she's being given other things you haven't signed off on in an "as needed" scenario.

HB

Joe C.

M1, Could you put together a package of all the medical records on the surgeries, ex rays, reports, ect. to give to the facilities doctor to demonstrate her history with back pain?

M1

Yes, I've got all the records and plan to give extensive history--I've already done that, in fact, but it doesn't mean that they heard it/paid attention. The rheumatologist declined to continue prescribing once she went to memroy care. I suppose I could ask again, but I want to pursue other avenues first. If the other facility could do it, I don't see why this one can't.

Jo C.

M; I am sorry - just when we think we have got everything settled well, it seems a new challenge always manages to insert itself into our peace of mind potential.

My guess is that the physician that is dragging his/her feet is not comfortable prescribing the narcotic med (s) in the manner in which it has been historically given. Reason for this is probably being highly uneasy with the scrutiny that care facilities are under regarding drug use and of course, it is an MD that prescribes who would be held highly liable on various fronts.

In all probability, having a one on one meeting with the MD with all of your documentation and a numbered step by step synopsis of the condition/prescribing that meets your Partners medical needs would be helpful and may settle things nicely considering it will be a physician/physician conversation with adequate objective documentation.

However, of the hesitancy or outright refusal continues, then perhaps a one time only visit to a pain center to confirm the necessity of the pain med for control and having such a decision in writing, may help the facility physician.

If that fails, one can choose to ask for names of other MDs who make rounds at that facility and then move forward to interview them using your own MD and Partner's medical history to find an MD who is willing to continue on with the prescribing as has been needed. Using an outside MD who does not make facility rounds may make it necessary to have your Partner brought to the medical office at intervals to be seen and that would be something you would in all probability wish to avoid for obvious reasons. (Wonder if they also use NPs or PAs on staff?)

I think that I would take this as an awareness that in probability, the facility manages and oversees med use very closely which most facilities are now doing because of heavy government oversight and need to report use of pain meds and many of the dementia related drugs such as antipsychotic use. This can be a good thing BUT will be able to think that after your Partner's med issue is settled.

Holding out hope all goes well . . . nothing is ever perfect in any setting . . . . but this is a crucial need that needs to be settled asap.

Let us know how this is going; may it all work out well after a bit more comfort measures for the recalcitrant MD.

J.

Denise1847

Dear M,

From my work in patient relations in a hospital, I have learned to resolve matters by getting another appropriate physician to talk to the problematic physician. Maybe the former pain management doctor would be willing to be the advocate. Also, is there a medical hierarchy within the facility to go to if this doesn't work? A last recourse is to speak to the highest level administrator at the facility and ask for recommendations on how to resolve. They are still a business and need to keep you happy for good reviews and future business.

M1

Well the talk with the geriatrician was reassuring today. They do insist on having pain management involved, but said she only needs to go in person twice a year. They want a urine screen for the meds--don't know if she'll be able to do that, but he said it's okay, if she can't do it in the office they can do it at MC. Twice a year I think I can manage. We'll see, I guess it depends on how it goes on Wednesday. I guess they just feel the need for someone to "say grace" over the regimen. I can live with that, I think.

Just got back from a five-hour visit--which just feels luxurious. We ate lunch, listened to a music hour, walked around--she asked me over and over again how we met, how long we'd been together, who my kids were, etc. etc. etc. Very repetitive conversation, but she was just happy in my company and I in hers. Did not recognize a picture of me and my kids from 1996--but that's okay, we've all changed a lot!!! Let me go at 4 pm without much fuss. Such a huge change.

toolbeltexpert

M1 that is such good news, I showed up this afternoon with a shake and dw saw me coming and was all smiles. That really helps a body!

Ed1937

That is good news. I'm glad things seem to be working out.

Joydean

That is great news and very happy for you both!

Marta

M1-that is remarkable, the change in your partner’s behavior toward you. Do you have any insights into what is behind the change?

M1

Marta I think it is primarily the physical difference in the facility, and perhaps the caregivers: everyone was very nice at the other facility, but communication with me was terrible, and I still have absolutely no explanation for that other than chalking it up to short staffing. The difference here in the light and space is striking, and knowing that she is a lifelong claustrophobic, i have to think a lot of it was that--but she couldn't articulate it. Even her room here is somewhat bigger. At the other place, her only view was of the parking lot and the air conditioning units. Here, it overlooks trees and a big garden. There, she was right by the dining area, so her room was a target for wanderers looking for a bathroom. Here, she's right by the nurses' station, so she's protected from that, and she's kind of tucked into a corner where there are no other entries close to her. There, there was an outdoor courtyard that was maybe 20 x 50 feet. Here, there is an outdoor area that is over an acre plus access to other areas with supervision.

Mind you, there are still issues and always will be. She is still packing up her belongings almost daily--so I have to keep things simple and can't really customize her room. Yesterday I found her toothbrush, socks, and some underwear in her art box. She continues to take the pictures (some of which she painted) off the walls. But she lets me put them back up and put other things away--I just tell her "Oh, here's your laundry, I'll put these away" and put things back where they belong. She is reluctant to let aides help her or let anyone in to clean her room. But I was there yesterday when they came to clean, and was able to persuade her to let them in. She still has a sense of humor, and I can joke with her--I tell her not to be a jackass, and that will nearly always make her laugh.

For for three weeks in, the change is indeed remarkable. I am just glad beyond belief to be able to spend time with her, and I think the more I can be there the better things will get. Fingers still crossed, but some of the heartache has eased, definitely. And the irony: I am paying a few hundred dollars less here than i was at the other place.

White Crane

M, I’m happy for both of you.

jfkoc

🙂

Jo C.

M; what a good outcome with the oversight MD; perhaps he will be more comfortable with tincture of time.

Most of all, it is wonderful to hear how much of a difference the new facility has made for the quality of life for your Partner. That is priceless and to think that quality of care and surroundings is lest costly per month and with toilet paper included! (Sorry; have to poke a little stick at the old facility and their no supplied toilet paper stance.)

I think this has not only improved the quality of your Partner's life, but has also improved yours with much more peace of mind.

Perhaps if she has no need to have pictures hung and if they trigger her as needing to take them down to pack; it may be that you can leave them down until she eventually passes through that phase. Thus far you have found good ways to deal with the clothing misplacement, etc. To think you got to spend so many hours with her with both of you happy is an amazing change in a very short period of time.

All your work and striving to put this together is reaping wonderful rewards, may it continue to get even better!

J.

ImMaggieMae

M1, so happy to hear that things are going better and that she is comfortable with your visiting her again. I like Jo C.’s comment about the pictures and things. After she takes them down, how about providing a box to store them and put it in a closet or someplace where she can find them. Then leave them off the walls. After all, they were there for her benefit and if they aren’t providing that benefit, why have them there? Maybe as her after a week or month or whatever, when she’s going to put her pictures back up? She seems like a person who likes to be in control.

Jeff86

Couldn’t be happier for you, M1. This change is beyond what you were hoping, I’m pretty sure. And after all you and your partner have been through over the past year, it’s practically a miracle. I hope you revel in it and that things continue to evolve in such a positive way.

JoseyWales

M1, I'm sooo happy that you can spend time with your wife. I know how hard it was to not be with her, and see first hand what was going on. Being able to spend that time with her where she's living and getting to know those around her and experience life with her - that's priceless.

M1

Yes, it is. Another good day today--and yes, I'm going to leave the pictures down for a while. Her great nephew came today and brought a new, serious girlfriend (we highly approved). It is indeed precious, precious time. I'm gratefui for whatever time we have.

FWIW there was a good article in the Washington Post today--about now happiness is not a life goal (that's what caught my attention), but fulfillment can be and is. So many of us struggle with not being able to make our LO's happy--and that's true, i can't either. The point of this article was that happiness, as an emotion, is fleeting. But if you try to turn the question as to whether you have lived a fulfilling life, the prism changes. It's a lesson for me, certainly. Whether I can apply it to my partner in any meaningful way, I'm not sure. She certainly is not happy now. But I am absolutely certain that she has led a fulfilling life. And doesn't have many regrets, if any. And that's more than enough, for now.