View unanswered posts | View active topics It is currently Sat Nov 01, 2014 6:16 am



Reply to topic  [ 64 posts ]  Go to page Previous  1, 2, 3, 4, 5  Next
 Pain complaints 
Author Message

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Pain complaints
Wow, Julianne! Good detective work on your part! I often wonder how many patients who don't have keen advocates get permanently screwed up by medications.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon Nov 22, 2010 10:23 am
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Pain complaints
Julianne,
I am so glad that the strong patch is working out better and giving her more comfort, we really have to always be on top with the drug situation with our LO's, after all we know them best !

_________________
Irene Selak


Mon Nov 22, 2010 1:22 pm
Profile WWW

Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Pain complaints
Thanks, everyone for your encouragement and support! It is terrific to know that she is not crying every morning from pain. She actually notices a big difference, and so do the nurses. She might be slightly more confused by the nurses feel this is temporary as she adjusts to the stronger patch. Anyway, we'll keep an eye on it!

Julianne


Tue Nov 23, 2010 12:47 am
Profile

Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Pain complaints
Oh my, what a day we had today! My mother pulled off her Fentanyl pain patch during the night (the 25 mcg. patch she was prescribed on Saturday). So the nurses put on a new one (on her back this time where she can't reach it). (I'd think in a nursing home they would automatically do that but apparently not.)

Wow! I guess it really doubled up the meds in her system or something, because she was extremely out of it by this afternoon. I guess they didn't have much choice, as she was sobbing with pain this morning.

I was in a real estate closing for most of the day, so my sister was dealing with it and I didn't get word until the evening. I spoke with the charge nurse and she said we need to let things level out before we will know if the new dosage is too strong for her. My sister and I were willing to accept a little bit more confusion in exchange for Mother being truly pain-free, as she reports with the stronger patch, but we are concerned about it being too much for her.

Also, does anyone know whether this drug causes an irreversible deterioration like some other drugs do? I am assuming the Fentanyl just has to get out of her system, but maybe that is not true.

My husband and I are about to leave for a five-day vacation over Thanksgiving, and now this. Everyone is saying we should go, as Mother is well taken care of, but it certainly makes me uneasy.

Julianne


Wed Nov 24, 2010 1:06 am
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3406
Location: Vermont
Post Re: Pain complaints
Julianne - I don't have the medical background or observations to answer your questions about irreversible side effects, but Pat A. and others on here can probably tell you their thoughts as medical professionals. However, re: Thanksgiving vacation - I'd say go for it. It's only 5 days, and if you trust the staff and medical people treating your mom, they will get it worked out whether you are there or not. Go and have a good time - you need to keep your own energy up and get away mentally and physically for some breaks. I also ask myself when I'm trying to figure out what to do "What would my dad have said in this situation if he were still healthy? What would he want me to do?" That will often get me the answer I can live with best. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Wed Nov 24, 2010 9:19 am
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Pain complaints
Julianne, pain relievers don't cause irreversible effects like NMS that neuroloeptic drugs can do. It should wear off--you're right that she just got a larger dose because of the reapplication of the patch.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Wed Nov 24, 2010 10:27 am
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Pain complaints
Julianne -
I think you should go on your vacation! The nursing home sounds like they are very attentive to your mother's situation.
Robin


Wed Nov 24, 2010 1:23 pm
Profile

Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Pain complaints
Lynn, Pat and Robin, thanks so much for your thoughts, information and encouragement! As you might have guessed from my delay in responding, we did go, and just got back this evening. My sister basically ordered me to leave town--actually, no, she just persuaded me that the NH and doctor would handle things, and she would step in (telephonically--she lives 1200 miles away) and monitor things. (She is terrific over the phone with my mother--incredibly patient and nurturing.)

As it turned out, the doctor discontinued the pain patch (my mother got even worse after Tuesday--hallucinations and all) and ordered just Vicodin TID. I don't know how three Vicodin will manage her pain when that plus the low dose patch did not, but I have not had a chance to speak with the doctor yet, and I assume she has some kind of a plan. If not, I will ask if we need to involve the diagnosing neurologist or a pain specialist. Also, I spoke with a pharmacist friend of mine who said that long-acting morphine (pills) can work in this situation without a lot of the side effects of Fentanyl, so maybe I will ask the doctor about that.

And my mother has improved steadily, so the Fentanyl must be slowly working its way out of her system.

The best part is that we were away for five days and for the last three of them, I removed myself totally from the situation and my sister handled it (she did send e-mail bulletins on my smartphone, though). After Thanksgiving with my in-laws in Milwaukee, my husband and I had three lovely days in Door County (on the "thumb" of Wisconsin--having lived for some time in New England, I think of it as Maine without the salt air)--resting, knitting (okay, he was watching football), hiking and letting someone else do the cooking and make the bed! You were right, a respite really does help. I feel much better! A good lesson.

Thanks again,

Julianne


Sun Nov 28, 2010 7:39 pm
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Pain complaints
You are so right, Julianne! I need a respite--and I need it badly.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sun Nov 28, 2010 8:07 pm
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Pain complaints
Julieanne,
So glad you were able to get away for a few days, it really does make a difference!

_________________
Irene Selak


Sun Nov 28, 2010 8:31 pm
Profile WWW

Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Pain complaints
Pat, I really do so hope that you can find some way to get away, too. It would do you a world of good! I will keep my fingers crossed for you. :o)

Julianne


Sun Nov 28, 2010 8:53 pm
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Pain complaints
So glad you got away. The stresses of life are certainly waiting for you. It doesn't seem that your mother is any worse for your absence.


Mon Nov 29, 2010 1:56 am
Profile

Joined: Sat Sep 11, 2010 6:25 am
Posts: 9
Post Re: Pain complaints
Julianne - my mother was extremely sensitive to all medication and was in agonizing pain as well for most of her illness (most notably neck pain). You are doing exactly the right thing staying on top of all of the medications, making sure reactions are noted and meds are changed as needed. This is exactly what an LBD patient needs from a loved one/advocate.


Mon Nov 29, 2010 5:32 am
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3406
Location: Vermont
Post Re: Pain complaints
So glad you got away and are feeling better. It is so necessary to take care of yourself. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Nov 29, 2010 10:04 am
Profile

Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Pain complaints
Okay, this will be interesting. Today happened to be the date for the doctor's monthly visit to the NH, so she saw my mother. I had left word for her about my concerns so she knew them before she saw her. The NH called to tell me what the doctor had changed. Apparently she consulted the pharmacist and they decided together. They discontinued her Cymbalta and increased her Effexor (that was a transition already in the works, but the nurse said the doctor's notes said something about the Cymbalta causing "secondary overactivation," whatever that is). Also, she added Ativan PRN for agitation, added 1/2 a Vicodin BID in addition to the three whole ones she can have PRN, and discontinued her Celebrex. I think the Ativan may be helpful, as she is quite agitated and anxious much of the time. The doctor did also order PT and OT evaluations of her pain, so I guess they will work with her on exercises and so forth to address whatever pain issues they figure out.

I am concerned about making all these medication changes at once and also am concerned that adding two more half doses of Vicodin per day will not alleviate her pain. The doctor was supposed to call me after going to the NH and she may yet do that--sometimes it is evening when she calls. Maybe she will have more of an explanation.

Even though my mother sounds more coherent on the phone, she is still more confused than when the whole pain patch thing started. I know that is probably just a coincidence, but she can no longer operate the TV remote. She told me last night that if this is going to be what the rest of her life will be like (in the NH, not able to do things that are meaningful), she doesn't really see the point. I couldn't tell her that it's going change and soon she may not even realize it. So sad.

Sure is nice to have a place to vent where others understand!!

Julianne


Mon Nov 29, 2010 7:07 pm
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 64 posts ]  Go to page Previous  1, 2, 3, 4, 5  Next

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by Maël Soucaze © 2010 phpBB.fr