Does moaning mean pain?: Dave is having... - PSP Association

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Does moaning mean pain?

judy1962 profile image
8 Replies

Dave is having happy days inspite of how badly he is doing physically. He can not speak so we ask yes and no questions. My daughter and I are with him all day and he just loves the attention and can even give us a very slight smile and moan of joy. The problem is in the nights. His moaning has escalated to all night long and the sound is awful as though he is in serious pain. He can't answer me as to what he needs and my heart breaks. He seems to be indicating that he has no pain but I am never sure. Any thoughts?

Judy

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judy1962 profile image
judy1962
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8 Replies
superman888 profile image
superman888

I find moaning usually indicates laboured breathing and difficulty clearing the throat because of the swallowing problems. I should imagine if he is awake and moaning it may indicate pain but if he is asleep and moaning then it is less likely to be pain. Maybe his tongue is hampering his breathing at night? My mum also moans at night and does not sleep if she does not get her sleeping tablet. However it can indicate pain sometimes. If my mum is unable to speak I simply ask her if she is in pain and then ask her if she is pain and have her point with her index finger to the area where the pain is. Usually it is pain in the mouth with my mum and I found pain in the soft palate can hamper communication. Also a few days ago my mum was awake at night and moaning because her jaw was clamped tight for some reason. It sounds like he is at a similar stage as my mum. Good Luck.

judy1962 profile image
judy1962 in reply to superman888

Thank you superman this was helpful. I believe his moaning is linked to breathing difficulties. He is sleeping g peacefully tonight. I put lowered his head and placed him on side and have been alternating him to each side and keeping him off his back. Not sure if that is helping or if it is just a good night for him.

dllera profile image
dllera

Hi Judy - I feel for you. The moaning can be absolutely terrible - I think that was the one thing that really bothered me - -My dad's moaning was at a pitch that was just difficult to bear. I know that my dad was in pain and was on pain management. We went with Tyleno 4's to oxycodone to morphine. Dad had been on pain managment for several years before he passed. Everything I've read is that most PSP people experience pain but cannot articulate where the pain is but some people have said that their loved one does not have pain so I guess I would just go with your intuition. Maybe try some pain medication and see if that helps - also -maybe try turning him every couple to 3 hours at night. His position may be bothering him. Good luck -

judy1962 profile image
judy1962 in reply to dllera

Thank you Dllera and I agrees that the moaning is the most difficult thing and then the choking and the scared look in his eyes. My nurses and I turn him every 3 hours but even that is no longer helpful. Did the morphine help? His doctor and nurses are pushing that. The only reason I don't give it to him is because he has told me not to give it to him. It may be helpul for him to know that it helped your dad.

Judy

dllera profile image
dllera

Hi Judy - Hospice pushes morphine but we did not do morphine really until the very end -I mean just a few months before my dad passed and the only reason we used it was that my dad's left lung was collasping and was filling with fluid and antibotics were no longer effective so we used morphine to help open the lungs for easier breathing and pain control. We used oxycodone for many years prior to the morphine. You will have to make considerations for constipation though -pain meds can cause that - we used Miralax and senna to help - -miralax doesn't thicken though so you'll have to mix it with applessauce or somthing like that (and it will thin yogurt too) -senna can be crushed and put into applesauce or yogurt but it doesn't taste very good so you'll really have to "hide it" in whatever you put it in (unless of course you have PEG). We used scolpapine patches behind the ear to help with secretions and dad's head was alway elevated in bed -and we ran a vaporizer - -(oh and don't forget to Q-tip your husband's nose out since he cannot blow it so that less mucus goes down the throat)- -you may want to consider all of these tricks if your husband is really choking - - -no free lunch again since the patches can really cause dry mounth (and a little loopiness at first) so we used dry mouth gel and swabbed his mouth with water to keep his mouth moist. Your husband may have the same perception of morphine that I have - I have always thought of it as the "death drug" - I don't know if that is true but it is my perception -it may be your husband's as well which is why he is telling you not to give it to him -in a way telling you that he is not ready. I say try the oxy or another pain med -maybe a low dose on a regime and tweek it from there and decide what doses to use on an as needed basis on bad days. He may be more open to that and if that doesn't help then try the morphine. I have to tell you Judy that hospice had told me several times that my father was going to pass and really tried to push the morphine- -in my experience -they were wrong everytime - my dad even survived septic shock and pnumonia -it was me who noticed the significant change in him and I was the one that told Hospice that I thought my dad had 2 -4 weeks left and sure enough -dad passed 2 1/2 weeks later. When in doubt -go with your gut -you know your husband better than anyone else beside him. Do some reading on morhpine - -you'll make the right decision.

jimandsharynp profile image
jimandsharynp

Perhaps it's something like needing to have a bowel movment or he needs a catherter to relieve urinary difficulty. My first wife had a brain virus and was moaning and all it was is that she needed to be catherized to releave her urine. My thoughts are with you.

AmandaF profile image
AmandaF

Judy,

I believe my mother is at an earlier stage of the disease than your husband. She can still speak. However, she has recently started loud and fairly continuous groaning. She is conscious that she is doing it, but cannot control it and assures me that she is not in any pain and that the groaning is just involuntary.

Sometimes, I can reduce or quieten the groaning by giving her music or speech radio to listen to, using earphones.

I do sympathise with you because it is distressing to hear. But from my own experience with my mother, I don't believe that groaning always means the person is in pain. I hope this is true for Dave.

My very best wishes to you both.

Amanda.

Gigi4ever profile image
Gigi4ever

OMG- I'm experiencing the same thing with my Mom. She also says she is not experiencing any pain but I'm not sure. Just joined the blog sight as I also need feedback from others going through the same process as me.

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