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 Moaning: distinguishing pain from other causes? 
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 245
Post Moaning: distinguishing pain from other causes?
My parents seem to be taking turns having health crises. We had just about gotten my dad back to reasonable physical function after his fall, week in hospital, 4 weeks in Health Center/ SNF at their retirement center, and 4 weeks of PT. This week, my mother became ill; I took her to the doctor on Wed and he sent her to ER, and she was eventually admitted to the hospital with pneumonia. She responded very well to treatment (caught it early) and was much better, discharged yesterday evening to the Health Center, with some continuing medication to ensure complete recovery.

Unfortunately, as many of you know, the combination of illness and hospitalization can lead to other setbacks. My mother has been declining gently but still fairly articulate (if less interested in talking), ambulatory with walker but with no physical symptoms, and generally able to handle self-care when prompted (executive function toast but memory relatively spared.) She has some arthritis and complains of hip and shoulder pain, which we have to treat with tylenol as NSAIDS like aspirin or ibuprofen are contraindicated as a bleeding risk. She has occasionally moaned when getting up, walking, or turning in bed, and has generally said it is her hip (or whatever) hurting.

But since she went into the hospital, she has been moaning piteously, almost continuously. Sometimes, when asked, she will say her hip hurts, but a lot of times she denies being in pain, and she doesn't grimace, and it's not restricted to movement or awkward positions. The hospitalist/ geriatrician suggested that it might be dementia-related, and her nurse thinks it may be self-soothing. It's very disturbing to my father, and to the woman who shares the room with her at the SNF. (Very nice lady; we know her and her husband slightly from the retirement community.)

I know some people have mentioned this as a late-stage phenomenon, but that seems unlikely here, even though my mother is more agitated and restless since she got to the SNF. She is still very strong physically, walks fast and fairly easily (at least for someone who's 95 and using a walker!) and is eating well and enjoying meals. She remembered her doctor at hospital after meeting her just once, and is generally helpful and polite with nurses, and is oriented to time and place. I had no hesitation about treating the pneumonia given her current condition, seemed fully consistent with her expressed wishes, and she did respond fast.

Does anyone have any thoughts on this behavior? Is it possibly self-soothing due to anxiety and change of setting, and feeling ill and scared? I have a pain consult requested to see if we can do anything more about her arthritis, but it's not at all clear that physical discomfort is the main cause.
Thanks!
Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Sun Mar 04, 2012 12:45 am
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Joined: Mon Feb 21, 2011 9:55 pm
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Post Re: Moaning: distinguishing pain from other causes?
Dad does this all the time. His nurse also thinks it is for comfort. When he began to do it first, I was continuously calling the nurse, but now I can identify when he is in physical pain, (he has arthritis in his shoulder and arm) and when he is just moaning for comfort ( how it comforts I cannot figure out). Though it can be upsetting, the best thing you can do is tell yourself that she is ok, and that if she was in genuine agony, I'm sure the doctor would know. Dad has not been given any medication for it, but he is on seroquel, and also a morphine pain patch - I am not sure what else would help. Dad has been doing this since we placed him in the nursing home last August, so maybe it has to do with changes in environment. It does annoy his room mates, but the doctors said there is nothing else they can give him. Keep me updated - I will be very interested if you find something that works for your mother,
Ger

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cared for Dad who passed away on January 28th 2013 R.I.P.


Sun Mar 04, 2012 10:47 am
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Post Re: Moaning: distinguishing pain from other causes?
Hi Ger,
Thanks for your perspective - it sounds as if the nurses have seen this before and may have good clinical insight!

I also did what I should have done earlier, and ran a quick PubMed search. Moaning is reported as one common non-motor fluctuation in PD (Bayulkem and Lopez, J Neurol Sci 2010). I don't have access to the full article so easily from home but will look it up when I go in to my office, as it may have some suggestions for treatment. There is also a fair amount of literature in the nursing world on managing patients with disruptive vocalizations. Guess I will have to do some research! Such literature as I've found so far suggests there is no consensus on what to do about such vocalizations. Apparently moaning, as well as repetitive movements such as the nose-scratching that my mother does, are also features of tardive dyskinesia, which often results from treatment with dopamine antagonists. Since my mother has not been treated with any dopamine antagonists, that doesn't seem a likely explanation. But there may be related side effects from some of her other pharmacologic stew.

More later, must run to Friends Meeting now. Maybe someone else will have additional insights!
Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Sun Mar 04, 2012 1:18 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Moaning: distinguishing pain from other causes?
My father (autopsy-confirmed PSP) hummed or moaned for a couple of years before his death. Sometimes it was loud and nonstop. (There's one paper on this phenomenon in PSP.) Near the end of life, it was hard to tell if he was in pain. He was incapable of any form of communication. Usually we looked to other signs to try to figure out if he was in pain -- red face, tense arms, rigid abdomen, no urine or blood in the catheter bag, etc. We usually gave him Roxanol (liquid morphine, sublingual) for the pain. Over time we had to increase the dose of Roxanol to get him relief. We would also address the source of the pain if we knew that; so we'd give a suppository for constipation or unkink the catheter tube.


Sun Mar 04, 2012 3:13 pm
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Post Re: Moaning: distinguishing pain from other causes?
That's tough to deal with, Robin - sounds like you had his cues figured out pretty well, though.

My mother is still able to talk and communicate and answer questions. She allows that her hip arthritis bothers her some, but that doesn't seem to account for the acute onset of steady moaning.

And the good news is that she seemed considerably better when I saw her today; she went to eat lunch and was not moaning, seemed pretty much alert, and was asleep quietly when I went back later. My daughter visited in between and said she was moaning a little but not steadily and not as loudly. I'm still going to follow up for the pain consult to see if we can do anything more about her arthritis, though.

Most of the papers I've been able to find, in a couple of quick searches of PubMed, place the moaning later in the progression, or else as a side effect of some treatment. There is one paper with a nice typology of disruptive vocalizations and a so-called evidence based guideline (but since there have not really been many clinical trials, I'd say the evidence is pretty shaky.) (McMinn and Draper, Aging Mental Health 2005). One later paper may have more information, Palese et al J Neurosci Nursing 2009, but I don't have access to that one.

So I guess for the moment we'll just muddle along as best we can!
Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Sun Mar 04, 2012 8:33 pm
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Location: SF Bay Area (Northern CA)
Post Re: Moaning: distinguishing pain from other causes?
In PSP, moaning is a mid- and late-stage symptom. On some occasions, for my father it was an indication that he didn't like some idea I had. He'd moan, and I'd take it to mean "I don't want to do that."

But most of the time the moaning had no purpose. Those of us on the PSP Forum, have postulated over the years that the moaning is an attempt for the person to remain part of the conversation (sort of like "uh-huh, I'm hearing you"). Or that it's an attempt for the person to clear his/her throat. (Given the dysphagia, it could be that saliva and phlegm are just sitting in the throat or near the epiglotis, and this is detected by the person.) Sometimes I'd put my hand over dad's mouth to muffle the sound a bit; he'd stop moaning and laugh. Or, I'd moan back at him, and he'd stop and laugh. Very weird symptom.

The PSP paper is by Maria Stamelou, MD, of the UK. She uses the term "groaning" in the paper.


Sun Mar 04, 2012 11:22 pm
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Joined: Tue Aug 30, 2011 1:42 pm
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Post Re: Moaning: distinguishing pain from other causes?
Robin -

What does PSP stand for? I have a sinus infection, so my own brain isn't working that well today, but I wasn't sure if it was Parkinson's or something else. Thanks -

Liz


Thu Mar 08, 2012 12:40 pm
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Location: SF Bay Area (Northern CA)
Post Re: Moaning: distinguishing pain from other causes?
There are four atypical parkinsonism disorders -- three are dementing, and one is not. They are PSP, CBD, DLB, and MSA. PSP = progressive supranuclear palsy


Thu Mar 08, 2012 11:10 pm
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Joined: Fri May 28, 2010 4:46 pm
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Location: Salem, Oregon
Post Re: Moaning: distinguishing pain from other causes?
For about two or three months my mom has been making a quiet moaning or humming sound (not a musical note sound, though). It seems kind of rythmic as if it's on every exhalation. It will last for an hour or so, and then she'll stop. Dad thinks it means she's in pain, although when we ask her, she shakes her head no. Today she had trouble coughing, but once she finally did, she began to make that little moaning sound, so I think it may have been a need to clear her throat. Her doctor says it's time for hospice, so after reading these posts, I think it's just another symptom signaling that she's in the late stages. Mom is fairly unresponsive now and increasingly needs a wheelchair over a walker because she can't get her feet to move, so it sounds like she's further along in the progression of the disease than your mom, Laurel. Their moaning could be for completely different reasons.


Fri Mar 09, 2012 5:00 pm
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Post Re: Moaning: distinguishing pain from other causes?
My mother does a similar thing, periodically making a series of short humming sounds (mmm-mmm-mmm-mmm-mmm) over and over for about an hour or so. The nurses at the SNF and the doctor do not believe it is an expression of pain because she denies pain and also does not have any other physical manifestations of pain that they look for. Her level of awareness fluctuates and this occurs only when she is relatively less aware. It is perplexing not to know exactly why it happens.

Julianne


Fri Mar 09, 2012 5:22 pm
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Post Re: Moaning: distinguishing pain from other causes?
My husband also hums, but it seems more that he is trying to communicate than anything else. Which brings up another question I have:
It seems as if many of your loved ones still can verbalize into the late stages and even just before they pass. My husband has been unable to speak anything that makes much sense for a long time now. He still has 'conditioned responses' that he can get out, for example "thank you" if someone says it to him first. I'll hear 3 to 5 word phrases when he is asleep and talking out loud and he still (incredibly) will say "you're beautiful" or "I love you" to me maybe once a week. It would seem that the degree of cognition does not necessarily indicate the advancement of the disease.......?
I might also add that last week when my husband had a seizure (the only one he has had) he MOANED loudly afterward for about half an hour. I do not know if there is pain after a seizure but the hospice nurse that came had not before experienced that. Any insight from someone who has had/seen seizures? Thanks, Sher

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Sher (53) married 29 years to Ken (66) who was diagnosed with LBD in 2008, but it most likely began many years before.


Sun Mar 11, 2012 12:25 am
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Post Re: Moaning: distinguishing pain from other causes?
Laurel, may I say again that your parents are AMAZING! I've really grown to admire them.

I didn't answer earlier because Mom didn't moan. Maybe, as she could rarely get a word out, she just opted for no sound. She did cry gently. If she hurt, she couldn't or wouldn't articulate where it hurt, she'd just cry. The "wouldn't" is because she was someone who would not admit to anyone that she was sick or in pain. She would indicate with a head shake to the nurses that she wasn't in pain and then I would start touching or pressing her in the areas she commonly had pain and have to watch her face or, if I was lucky, hear a gasp when I hit the right spot. (Usually gas.) And she would still not let the staff know she hurt.

Don't worry about the roommate. Mom's roommate had a different sort of moan - her mantra of "help me, please help me" until she could fall asleep. If you asked her what she needed help with, she would say she didn't know. And she would start the mantra all over again a few minutes later. On the nights I would stay late with Mom (when she was sick or upset), I learned that it was easier to just let the roommate continue the mantra until she slept. Eventually it became sort of a lullaby for Mom and even comforting to me. I would worry when the roommate was silent. Your mom's roommate will be accustomed to it eventually and may even be soothed by it.

I hope things are getting better.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Mon Mar 12, 2012 11:20 am
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Joined: Thu Apr 21, 2011 9:07 pm
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Post Re: Moaning: distinguishing pain from other causes?
Thanks so much, Kate and all!
My mom is back in apartment now, and seems much better. Maybe not back all the way to the pre-pneumonia baseline cognitively but pretty much there physically. She still moans occasionally but it's not the continual, pitiful sound. Now it is more or less limited to specific movements or walking and she will say that it's the arthritis in her hip. She also claims, though, that it is helpful for her to walk even if it is uncomfortable, and likes to go out for a walk up and down the hall or even around the building if the weather is nice.

So my suspicion is that it was stress and anxiety more than anything, and now that she is back home and with my dad, her anxiety level no longer trips the "moaning button".

Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Fri Mar 16, 2012 5:30 pm
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Post Re: Moaning: distinguishing pain from other causes?
Laurel,
That's good news! Hope the button remains unpushed...
Robin


Fri Mar 16, 2012 7:33 pm
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Post Re: Moaning: distinguishing pain from other causes?
I have been hesitant to post on this subject.

I moan.

It is very comforting, it beats screaming, crying, whining at times I don't feel like laughing.

I spoke to Dr. Boeve about this yesterday. It is significant in a LBD diagnosis. Ask him.

……

I know you….as caregivers have it really hard. I don't see any reprieve for you.

I see that the best you as caregivers can hope for……is to invest in understanding into what is happening….or run for the hills…
for trying to change what a diseased brain is doing or what a diseased brain 'determines' is 'right'…..is an exercise in futility…..

only understanding what is occuring……and that it doesn't have to make sense to anyone…..
but that it is occuring and it will likely continue to occur, and that it likely will get worse every day……

that is how I see caregivers can help…..
you can't change what is happening…..

only choose to endure it……or not…..

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Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Sat Mar 17, 2012 4:20 pm
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