RSS Feed Print
Did you see this post?
Michael Ellenbogen
Posted: Thursday, January 21, 2016 12:30 PM
Joined: 11/30/2011
Posts: 4460


Some people just kill me. I guess it is just better to let them suffer for their own stupid believes.

 

Discussion Board » Caregivers Forum » Mom cannot report her pain

 


alz+
Posted: Thursday, January 21, 2016 1:46 PM
Joined: 9/12/2013
Posts: 3608


ok, I went to have a look.

My Mother was the same with my Dad. Never even thought to examine him for pin in foot, broken tooth, broken bone, MRSA infected hip repair.

Nightmare scenario. Maybe they have already searched her body for tender place, or know it is arthritis pain. But scary to think of being on the end of pain and no one investigating (assuming they have not).


jfkoc
Posted: Thursday, January 21, 2016 2:02 PM
Joined: 12/4/2011
Posts: 21244


Michael...I do not think your response is helpful. Maybe some insight into how to discover what is causing the pain from the point of view from someone with AD????
alz+
Posted: Thursday, January 21, 2016 2:27 PM
Joined: 9/12/2013
Posts: 3608


jfkoc - I get what you're thinking.

 Michael is just shining a light on stuff that happens every day to thousands of us,  helps people think of the hidden problems of working with a person who can not explain their distress.  He is blunt and I appreciate it.

also, Michael is alerting CGvrs  that maybe they ought to all give a gentle physical exam once a week, just to check for stuff that could easily go unnoticed.

 He has devoted years to educating people about the dark parts of losing the ability to explain distress so his take on most things matters to me.

 Thanks though for reminding us all that everyone is sensitive in different ways to what is posted onboards.

 


Michael Ellenbogen
Posted: Thursday, January 21, 2016 3:11 PM
Joined: 11/30/2011
Posts: 4460


I thought I did pretty good by not saying what I really thought in the original post. The person made the following comment which made me think she did not want any help. “I don't need pep talks.  But I don't need judgey caregivers, either.”

 

She also said “I'm not in a rush to give the dear woman barbiturates “

 

I hope those who are living with dementia see what is in their future so they can plan for this now. This is exactly why I have chosen my path. I have ideas but that person dose not want them.   


jfkoc
Posted: Thursday, January 21, 2016 4:17 PM
Joined: 12/4/2011
Posts: 21244


alz+ posted "also, Michael is alerting CGvrs  that maybe they ought to all give a gentle physical exam once a week, just to check for stuff that could easily go unnoticed."

no...he did not alert caregivers giving them a heads up on doing a gentle physical exam...that would have been helpful

why miss the opportunity to educate and inform


The_Sun_Still_Rises
Posted: Thursday, January 21, 2016 4:54 PM
Joined: 7/24/2015
Posts: 3020


As Alz+ said, Michael is just shining a light on an issue we ALL face (those of use with disease)...and from our perspective, what Michael is saying here makes perfect sense. However, I can get that for someone without the disease that it could look very differently...maybe like an inside joke when you are on the outside...and not at all get what is actually being communicated in this thread.

We have separate boards, not to separate us, but because we have separate issues...that we are dealing with from separate perspectives.  When we come to the caregiver boards, we are expected to try to understand what we read from the caregiver perspective...I would like to think that the same courtesy would be extended to us over here...and that you would at least try to see what he is saying from how we might see this...even if so doing may make you a little uncomfortable (as it often makes us).  I would, additionally, hope that you would see value in allowing yourself a look into something that may make you uncomfortable...because maybe you might find an insight worth having.

What he posted...this IS a very BIG issue for people with the disease..  And I feel Michael's post is a call to us to think about how is it we can overcome and deal with this in our personal lives...because, like it or not, I (or Alz+, or Michael, or any of us on this board) could just as easily BE that lady's mom...and BE being subjected to that right now...in a very real sense (an all too real sense) that could be me....and every last one of us here get that on an intimate level that caregivers are only starting to catch on to.  Because these are not mythical stories we are talking about here...there is a very real person at the end of that post, a vulnerable and isolated adult who is in high levels of pain...to wit, because she cannot communicate, her loved one isn't all that motivated to help ease for her despite seeing it and knowing it.  To me, that represents a HUGE barrier to care that we all face in our daily lives...and sadly, is just one of a great many. 

To understand what we are thinking/feeling/saying, you have to take yourself out of your shoes...and get into the shoes of wincing mom, in pain, not getting dr rx'd level pain management...and not being able to help herself...and know that that could one day be you (and, for a great many people on this board who are not now diagnosed, WILL be one day facing this same issue)  The question is, I think, that Michael put to us in a very gentle way...is HOW can we help ourselves, if that were us?

Iris and Mimi who are both very early on in the disease process and have much more ability than most the rest of us here...are always on about being proactive and how we can protect ourselves and insulate ourselves and thinking that there are easy solutions for the kinds of things we will be facing in our futures.  But really this illustrates that there is not always an easy solution and things are not that simple....and that we really need to be thinking about and preparing for...if ever this should happen to us.

I personally think, and this is just my opinion, that it is very good issue to raise and be thinking and talking about for us...even if it is making you uncomfortable in what I suspect is your now growing realization of how things are from our perspective...and you have my utmost empathy and respect in that waking up to...because it truly is the more devastating aspect of the disease, isn't it?

It is also, I feel, a gentle voice Michael is expressing of something we each ALL feel as we progress into the disease...that I don't quite have words for...a silent acknowledgment of our plea to world for real help and of our true helplessness because people still really don't get it...but also more than that, and different too.  Maybe a how did it become this?  And how can we make not this in our own lives?

Hope that helps you to understand a bit better and maybe put in more perspective.  <3


The_Sun_Still_Rises
Posted: Thursday, January 21, 2016 5:20 PM
Joined: 7/24/2015
Posts: 3020


jfkoc wrote:

alz+ posted "also, Michael is alerting CGvrs  that maybe they ought to all give a gentle physical exam once a week, just to check for stuff that could easily go unnoticed."

no...he did not alert caregivers giving them a heads up on doing a gentle physical exam...that would have been helpful

why miss the opportunity to educate and inform

-------------------------------------------------------------------------------------------------

The opportunity to educate and inform caregivers happens in the caregiver forums.  This is the Young Onset forum...the post here and its message was not intended for caregivers. 

-----

So often in this disease all the resources and supports are taken away from those with the actual disease, and redistributed to those without the disease.  Let us not also try to take from Michael his chance to communicate with his peers, and the opportunity for us to support each other, and redistribute that into subjugating us (and our thoughts and feelings) to having always only exist for the benefit and education of caregivers. 

We are more multidimensional than that...and you need to understand that we are people first, and that we are people with a terminal disease second.  Michael has every right to talk amongst his peers, about issues he and his peers face, and about aspects of the disease we with the disease face...and receive support.  Here in this forum we support Michael, and indeed, ALL people with the disease.  In the caregiver forums, we support caregivers.  That is how this works.

And that we DO spend a-n-y of our available cognitive reserve and try so hard to overcome our dis-Abilities and communication deficits to spend what little we have left on educating caregivers...is a gift we give you...not a given...and not something that you get to take....and definitely not something you get to force us to do.  Our lives having ticking clocks on them...we have only so many days left to LIVE...we only have so much cognitive reserve...we do not owe anyone to spend what precious little we have left on others.  That we "give" this is gift...let us not forget is gift.

Please try understand. <3



alz+
Posted: Thursday, January 21, 2016 6:38 PM
Joined: 9/12/2013
Posts: 3608


First of all, Michael says more in 3 sentences than I can in 10 paragraphs.

Secondly, he obviously conveyed exactly what he meant to by sharing this as a few of us got the message.

I know he does not intend to be cruel to anyone. I don't need him to state that.

And yes he did convey to me, by being so polite about sharing what he found, that maybe they ought to seek the source of these living helpless silent people's pain and suffering.

It was implied, and it was obviously happening to our kindred, who can not, apparently, get help for themselves while someone is observing them suffering.

Let's get this back on the original track and not make it about what is polite enough to discuss here.  When my Dad was suffering, in pain, I saw it in his eyes the moment I walked into the room. My Mother sat in chair at his side doing crosswords, for maybe 3 days he was moaning and his face contorted. The first thing that occurred to me was rip off the sheets and blanket and have a look. There it was, a huge MRSA black pit eroded through his flesh into his hip.

Three days and nights of someone next to him, three days and nights of nursing home staff cleaning him (?) feeding him? He seemed to tell me right away "Help!" and I did.

My Mother was miffed that she was supposed to have done something. Burned into my brain.

This is how he died. We got him "hospice" which allowed him to have a room at local hospital where I slept with him and helped him through the dying process from no food no water no more antibiotics.

I learned to suction him right away (nurses had given him a hand buzzer ! to call for help if he was choking - not kidding), hospice never delivered drugs or showed up as far as I know - someone might have "checked in" during the day.

  I  loved my Dad. We went through it together, kept the room dim and had a cot, held his hand or wiped his face and lips, soothed his brow with my hands, talked to him, slept by him. Helped him with his last breath. And he was calm, clean, comfortable, warm, and it was peaceful. Who will do this for me?

So Michael's post conveyed an awful lot to me, and none of it was something to be ashamed of. It is what commonly happens and maybe we can think of some way to coach people who help us at that point how to understand suffering without having it spelled out for them in triplicate.

My 10 paragraphs to his 3 sentences. Very weepy from this discussion.


jfkoc
Posted: Thursday, January 21, 2016 7:04 PM
Joined: 12/4/2011
Posts: 21244


Uncle....I do not understand but I hope my post on pain on the caregivers forum is OK.
TayB4
Posted: Thursday, January 21, 2016 7:16 PM
Joined: 8/8/2014
Posts: 886


Just a few of my thoughts:

I think that Michael starting a post and linking it to the original post seems to be for the purpose of denigrating the original poster. At the least this seems unkind and unnecessary.

The amount of time that it took him to do that could have been used to educate someone, rather than talk negatively about that person.

I don't believe that the caregivers on these boards are trying to take anything from PWD on these boards. If you would rather not educate us, then don't.

Sun says (and I am paraphrasing because I am using my phone and it is cumbersome to quote), that it is ok for Michael to talk this way because he is a PWD writing on the younger onset board and not the caregiver board. But the post that Michael takes exception to was on the Caregiver board, not the Younger Onset board. That seems to be a double standard. 

 


Veterans kid
Posted: Thursday, January 21, 2016 7:30 PM
Joined: 10/17/2014
Posts: 1239


Ok I'm confused here.  

I respect Michael and his opinion, that part is not confusing.  He did not say anything in regards to what to do.  I get it- he didn't post on caregivers forum, so it wasn't a comment geared towards a suggestion to help caregivers. That's all good.

Sun- you said

 And that we DO spend a-n-y of our available cognitive reserve and try so hard to overcome our dis-Abilities and communication deficits to spend what little we have left on educating caregivers...is a gift we give you...not a given...and not something that you get to take....and definitely not something you get to force us to do.  Our lives having ticking clocks on them...we have only so many days left to LIVE...we only have so much cognitive reserve...we do not owe anyone to spend what precious little we have left on others.  That we "give" this is gift...let us not forget is gift.

This is the part that's confusing.  I've read many posts of yours where you say you WANT to educate caregivers and help all you can,  and how bad caregivers can be ( not disagreeing that there are some people who shouldn't be caregivers-to anyone),  and how we need to find the best ways to work together.so...do you WANT to share your gift or not?  I'm not being disrespectful here, maybe I'm not aware of caregivers demanding your opinion or expecting it.  Maybe I missed that post or posts.

Or maybe I was doing my 24/7 caregiving.


Every persons life has a ticking clock.  

And no one owes anyone anything. 

Peace and <3


llee08032
Posted: Thursday, January 21, 2016 9:50 PM
Joined: 5/20/2014
Posts: 4408


This is upsetting to me also. Vicodin is not a barbituate and the tylenol is obviously not working as evidenced by the grimacing. Does she need to go to ER to get checked out? I would think so. What if she has a blood clot or appendicitis? Does she have UTI? Took a call about one of our few PWD where I work and was asked about a pattern of her getting agitated at 11:45 am. Is she hungry, tired or in pain? Does she need a snack before lunch? Did you see her eating her breakfast? Has the nurse checked her? Does she need rest? It sounds really noisy there please take her somewhere quiet. Light the Christmas tree? For crying out loud! 
Iris L.
Posted: Thursday, January 21, 2016 10:25 PM
Joined: 12/15/2011
Posts: 18509


This is why I am  so focused on Best Practices.  I want to be in charge of my own care for as long as possible.  I do not believe in relying on others to be in charge of me, because I have already experienced that no one will be responsive to me and take care of me.  I accept that I am on my own.

 

Professionals and people close to me have discounted my pain even while I was able to talk and communicate well.  How much worse will it be if and when I cannot verbalize as well?



One of the senior centers is offering a class on Pain Management.  I could teach a class on Pain Management myself.  What about when the usual Pain Management practices stop working, or never worked in the first place?  I devised my own Pain Management plan.  



I was a pediatrician.  Many of my patients did not verbalize.  I learned other methods of discerning pain.  It's a matter of being observant and knowledgeable.  In the case of this patient, a detailed history and a thorough physical examination would go a long way in determining the cause and possible resolution of her pain.


Patients with chronic conditions should not be allowed to get to where the pain is overwhelming.  They need for a pain plan to be in place.  Also, patients with chronic conditions should not be brought out in inclement weather, if it can be avoided.  

 

 I am in pain every day.  At times, every moment of every day.  I posted a thread about pain a while ago, but apparently most patients are not in pain, and no one could relate.  I definitely cannot allow anyone else to be in charge of my pain.  Just the thought of this possibility is traumatizing to me.

Iris L.



alz+
Posted: Thursday, January 21, 2016 10:26 PM
Joined: 9/12/2013
Posts: 3608


the point I think was - heads up! - here is a look at a possible future for you people who have progressive dementia!

 to person who said "we all have a ticking clock". yes, we do.  Mine changes the hour with another loss of an ability, I have an estimated expiration date. I respect all of us living with a diagnosis and a future most people fear, of becoming helpless. I personally gag when some one uses that line. Show some compassion.

Folks from Over The Wall - can you let go of the idea that everything discussed here has to be about "educating the CGvr too" or not "offending the CGvr"? Sure you can.

 I rarely read CGvr stuff because it creeps me out - some of the WONDERFUL posts make me so envious. Once in awhile I lay down my 2 cents. About mutual respect, man. Just give us some slack here.

***********

I'm all for a discussion about how one might communicate without conversation the urgent need for HELP! usually any dog can tell if some thing is wrong.

 I check my dog out every few days. It's interesting and important. She likes it.


Veterans kid
Posted: Thursday, January 21, 2016 10:49 PM
Joined: 10/17/2014
Posts: 1239


Alz+, I believe I am "THE PERSON" you're referring to? My screen name is  veterans kid and if you go back and read the post Sun was  The one who  first said about our lives be having ticking time clocks. All I did was state the obvious that we all are in the same boat.  

I can only imagine that some  of the topics discussed are upsetting.

 And I do read your post on the caregiving board and think that you have a very good insight and appreciate what you have to say. 

 Have some compassion?? Just as I don't know you and what you go through, you have no idea who I am, what kind of person I am, or to judge me in any capacity.  Not all caregivers are consumed with thoughts of whether  people on this board are conspiring against caregivers. 

 What you had written about your dad and hospice and the situation that you and he dealt with it brought tears to my eyes and I'm sure he was very thankful that you were there for him. 

 I will continue to care for my dad as well as I have for the last several years until he takes his last breath with the same love and compassion and respect that he deserves. That everyone deserves.


The_Sun_Still_Rises
Posted: Thursday, January 21, 2016 11:02 PM
Joined: 7/24/2015
Posts: 3020


Iris L. wrote:
I do not believe in relying on others to be in charge of me, because I have already experienced that no one will be responsive to me and take care of me.  I accept that I am on my own.

Iris L.

-----------------------------------------------------------------------------------------------------

You say this type think lot Iris, and I worry concern you.  I know you early on now.  But there comes a day this disease force you to depend on others...like the lady in the link.  You so strong independent (I like that too)...but I hope you think about write a care plan book (not just for death) for how you want to be care for if when you get there.

I independent like you...and feel much same way you. I also much more along in disease than you and now need help...no choice bout.  I try write detail what different things may happ and what I want caregiver to do me then.  It helps to educate any one who come care you when you get to that point.  And can educate them even if you can no speak right or be understood. 

Just thought I would say...maybe plant seed.  I hope you never need. But if do I want that you protect safe.  <3



Veterans kid
Posted: Thursday, January 21, 2016 11:10 PM
Joined: 10/17/2014
Posts: 1239


Sun, again. Confused.

What boys are you referring to?

If you thinking I am a male, I'm not.  I assume you've read my posts before, as you've replied to them in the past,

Maybe you weren't including me in your most recent post.

All I did was ask you to clarify, as I was confused by your post earlier today. 

I know you're struggling right now, so I'll just leave it at that. 

<3


The_Sun_Still_Rises
Posted: Thursday, January 21, 2016 11:28 PM
Joined: 7/24/2015
Posts: 3020


 

Veterans kid wrote:

if you go back and read the post Sun was  The one who  first said about our lives be having ticking time clocks. All I did was state the obvious that we all are in the same boat.  

------------------------------------------------------------------------------------------------

STOP...you comment so high offense!

We are NO all same boat, not this one and you better hope high heaven you never in my boat (this boat suck).  My brain right now, this sec run head long to my death...yours is no do that.  I see writing clear on my wall.  I know I have 1 year may less...and I know what is coming for me...no one wipe you *ss bet (so no same boat, how dare you say same boat?!).

I can barely do any thing.  Every write here very hard to do.  IF I write to be kind help you...it is a HUGE effort in my part (you flippant, no effort to be that...instead is effort to be nice kind effort you no make...no same boat I make effort you no make any effort all).  Do you have any clue how much work take no say f', f', f' all to you?  I make effort be kind to you...maybe fail, but make effort...more than you do me.  I do no owe you any effort...you want me effort you - you ask please.  You say thank you.  You no say you owe effort to you because I make different effort for some one else. We no same boat!

You need serious think how rude you be here now.  How dare you compare?!  That think most cruel thing any ever said to me.  I think you need to apologize. Think how to be nice peop here. 

In case you miss this point too...what you see here, my words go bad...you watching real time my brain dying in front your face...no we far from same boat.  I could be lady in link lay no pain meds...forced to suffer caregiver disease on top of Alzheimer's...you no that fate (yet)...we no same boat!  Shame you. 

I get you no get...but you need to go now...you need to go think long hard until you do get...and stop making worse.  You no come here this board treat people like me sh*t for fun...that no cool...you go think what you do.  Come back when you can start be support people here.  <---I am trying help you.


Amor Fati
Posted: Friday, January 22, 2016 4:31 AM
Joined: 1/9/2016
Posts: 87


(((((Sun))))

(((((Alz+)))))

(((((llee)))))

(((((Michael)))))

((((((Iris)))))

So sorry. Love you all. 

 


alz+
Posted: Friday, January 22, 2016 6:26 AM
Joined: 9/12/2013
Posts: 3608


I can not remember new names/persona when replying. Often what I just read is erased by the time I open the window to reply so I do not know who wrote what, etc.

 If you have a complaint about how this discussion, please post about THAT on Caregiver boards. Perhaps when someone has a problem with some with dementia they could privately message them?

 This topic is an important end of life issue we are discussing, not the personas on CGvr boards. No hard feelings.

********

Back to Michaels topic on being helpless and in pain....

what Iris wrote so cogently about reading pain in non verbal  children as a pediatrician was a perfect example. If someone is moaning, tears, or showing signs of distress let us hope some one notices and is willing to look for source of pain and gets us the help we need.

 my Dad got hives during his ALZ.  My Mom would scold him about "scratching." I got him an apt with dermatologist - who prescribed something that worked.

 Naturally it takes a team approach with at least one person on board who can see and hear distress and seek some help. If  I had been unable to visit my Dad every few days surely his infected hip repair would eventually have been noticed. Not about me being the star performer. My Mom was there, and just showing up and being there is something big.

Maybe there should be courses for nurses aides, CNA, LPN, CGvrs on how to read signs of distress, and refresher courses. Community courses? An opportunity here to create some new volunteer (or paid!) courses, or just discuss at memory cafes?  or volunteer to let people ASK A QUESTION at CGvr support meetings? I like doing that, think I will make that offer to local group of women who run care centers.

Iris were you offering to teach people now?

Michael thanks for getting me thinking about something besides my house and me, me , me!

Love you.

 


llee08032
Posted: Friday, January 22, 2016 6:44 AM
Joined: 5/20/2014
Posts: 4408


Please let's not go back and forth and have any more hurt feelings. Please try to understand that the PWD here in this thread are expressing their fears of the future. Fear of being left suffering and in pain and not being helped. The fear of not being able to communicate the pain and suffering. Is this not a support forum where we can express our fears and support one another? Where else are we to go to express our fears but here together amongst our few brethren. Understand that we also may need to be educated by you.  I was confused reading the referred to post. I am still confused about what was going on other than this woman is grimacing and in pain and no one knows where the pain is coming from. Is it only me who detected an air of resigned acceptance that this is just how it is?  Don't you see that for us this is like grief and the fear that you feel for your own mortality when someone dies? This thread is all about fear, all about the unknown and not understanding for each and everyone of us. Isn't fear, unknowing and not understanding what has always all along manifested in discrimination, racism, bias and prejudice?
Michael Ellenbogen
Posted: Friday, January 22, 2016 7:09 AM
Joined: 11/30/2011
Posts: 4460


Iris - You hit it right on the money. I also deal with lot of pains daily which I am capable of managing mostly by getting my mind to keep busy and not think about it. If I could not tune it out I would need some pain medication. In fact I realize as I progress my tolerance is a lot worse when it comes to pains. It is impossible to take care of yourself till the very end. We all will rely on someone else to take care of us unless you are taking the exit  road. My own wife is a medical person and I am pretty sure she would now know how to deal with my pain even know she is great in her field. I know it is not easy for others to figure these things out. In my opinion anyone who is in late stage 6 and on should be on pain medications as a percussion to not let them suffer. I know that sounds crazy but none should suffer just because they are unable to let others know.


llee08032
Posted: Friday, January 22, 2016 7:14 AM
Joined: 5/20/2014
Posts: 4408


Sun,

Your writing is off. Are you having problems with speaking again? Do you need to get checked out by Dr? Stay calm!

 


King Boo
Posted: Friday, January 22, 2016 7:23 AM
Joined: 1/9/2012
Posts: 3626


llee-just passing through, thank you for the clarity of understanding and purpose in your first 2 posts on this thread.    .     .     .  helped me form my thoughts.
llee08032
Posted: Friday, January 22, 2016 7:44 AM
Joined: 5/20/2014
Posts: 4408


Michael and Iris are on point about the need for some type of pain management planning for PWD when they cannot express their pain. This is the important aspect also of this thread that we need to take hold of here and perhaps start a new thread. I have not a clue about pain management but thanks to Michael I'm brought to the realization that I need to get schooled. 

It seems like the most natural thing in the world for PWD to fear being in pain and left to suffer without a voice. Perhaps we are vociferous all the more now in projecting fear of losing our voices? I think there is a very strong kindred spirit w/in us also for those who are unable to speak at present. We really understand that and feel that in our projections of fear. 

Veteran, you said you were confused. I'm not sure what about because I'm too confused to tell at this point. If you could imagine multiplying your confusion by 100 or maybe a 1000 perhaps you may be able to understand how we feel all the time. Your warm regard for your father shines through your post. Thank you for taking good care of him.


alz+
Posted: Friday, January 22, 2016 9:14 AM
Joined: 9/12/2013
Posts: 3608


Michael - to  be given anti anxiety anti pain medications

 last spring when we were touring emergency rooms during vacation, I got some IV drug to calm me down while lying on a cart in crowded hallway. I want more of what ever that was, they did not tell me. I was at total peace, nirvana style lounging but could not move.

They also kept topping me off with warm blankets. I would love to take that stuff and have a guarantee home shipment to look forward to. I also thought we should be given one of the good calming Hospice meds, great suggestion.

 L lee -thanks for intervention!


Veterans kid
Posted: Friday, January 22, 2016 9:27 AM
Joined: 10/17/2014
Posts: 1239


Alz+, that's funny you mentioned the warm blankets-it's probably the only good thing about hosptial visit or surgery.  I'd noticed when dad would be there, emergency room and or stay, that warm blanket would help.  He never got upset, or really agitated, but would always be comforted by the blanket.  I look them up online, and the warmers way out of our budget, so I improvise and put in the dryer for a bit, then run to quickly get it to him before all the warmth goes out!  Lol. 

It's a little off the main topic, but couldn't help but smile-I think that warm blanket feeling is universal-


Unforgiven
Posted: Friday, January 22, 2016 9:53 AM
Joined: 1/28/2013
Posts: 2659


Just a quick question, Michael.  Were the 'stupid beliefs' you mentioned the reluctance to give narcotic pain meds or the commu ication problems with someone who is non-verbal?  Your post doesn't make that clear.


wahine76
Posted: Friday, January 22, 2016 10:06 AM
Joined: 5/21/2013
Posts: 221


Thanks, Michael.  I appreciate it.  I should have given more background on the situation.  I don't want my mom to suffer, and as soon as the doctor mails me the scrip for vicodin, I will get it filled.  absolutely.  He faxed it to the pharmacy, but they wouldn't fill it with a fax, otherwise I would have it in hand by now.  I realize my post was very reactionary to what my world was yesterday morning, and anticipating the blizzard (and possible power outages) coming our way this afternoon, with no caregiving help.  I'm just a burned out daughter, but I'm doing everything I can for mom.  I do try and try and try.  That is why I called the doc and asked for something stronger than Tylenol.  It's just taking ages and ages to get the drug.  Mom doesn't do well on the stronger drugs, they just knock her out, but if it gives her relief, then so be it.  Just trying to get it, is all.  I was dreading the storm, had been chastised by the overnight caregiver, and was trying to get to my full-time job.  Felt like venting a bit.  I realize my posts are pretty gloomy, and that's why I don't post a lot.  I appreciate you.
Iris L.
Posted: Friday, January 22, 2016 12:23 PM
Joined: 12/15/2011
Posts: 18509


wahine76 wrote:
  Mom doesn't do well on the stronger drugs, they just knock her out, but if it gives her relief, then so be it.  

 

This is why each patient needs an individualized pain management plan.  The dosage of the medication prescribed needs to be titrated so that it provides pain relief, but without sedating the patient too much or having other untoward side effects.  


This is the "art" of medical practice.  Unfortunately, in our modern life, individualized care does not happen often.


I was concerned that the cause of the pain was not clear.  Is it determined to be arthritic pain?  Even those with arthritic pain can develop new pain in other areas, such as the teeth, the abdomen or elsewhere.


I have chronic back pain, but just a few months ago (November) developed new shoulder pain that was very bad.  The pain was worse at night.  I got no relief from my usual pain meds.  I finally remembered that I had an anti-inflammatory topical gel.  I applied it, and the first night, I had good pain relief.  If I had been unable to speak, there is no telling if anyone would realize I had new pain in my shoulder.  This is very troubling to me.


In children, it is easy to examine the entire body.  I never worked for any length of time with older adults.  But I think it would probably be a good idea to examine the entire body periodically, once a week perhaps, searching for irritations and abnormalities.  This is something I never see in caregiving material.


Also, a plan for maintaining mobility and flexibility of the limbs and joints should be developed.  Immobility causes pain.


This is a great thread, Michael.  Actually, I am surprised.  I thought I was the only one with chronic pain.  


How can we deal with our pain, and how can we let others know that we are in pain?  What different pain treatments help us? What treatments make us worse?  This will be an important preparation.


Iris L.