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 Treatment options Morphine 
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Joined: Tue Oct 16, 2007 11:27 pm
Posts: 84
Post Treatment options Morphine
Since John is in a Nursing home,I have hospice for extra care. He is prone to bed sores, since he is so thin and also his arms are very stiff at times. They are giving him Tylonal twice a day for pain but suggested to me last week that I might want to consider a low dosage of morphine for the pain. I have tried to research on morphine to see what type of side effects could evolve, but I feel I can get a better feedback from our forum. Can anyone tell me their results with using morphine, of coures with LB we have to watch any meds we give him. Hospice also suggested that the Aricept and Namanda is probably not helping him and asked about discontinuing it, I said No to that request

B


Mon Nov 15, 2010 2:51 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: Treatment options Morphine
B -

Morphine is well-tolerated in some and not-so-well-tolerated in others. The key unwanted side effect are hallucinations, especially those of the scary sort. I'm assuming your husband is not walking... If he is still walking, then you might want to think twice about the morphine, given the sedation it causes.

Another pain med you might consider is Ultram (tramadol). Another approach is to address the source of the pain; is it due to stiffness or bed sores? If stiffness, there are muscle relaxants that can be given.

Sorry if I've mentioned this before....If your husband intends to donate his brain upon death, be sure you've made the arrangements!

Robin


Mon Nov 15, 2010 4:59 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Treatment options Morphine
My dad is on the Fentanyl patch all the time, and has been receiving doses of morphine prior to dressing changes for his bed sore for a few weeks. They give it to him 30 min. before the dressing change, and he apparently tolerates it very well, then sleeps a lot.
He has been off Aricept for over a month now, and they say his mood is better. I wish they'd take him off the Namenda (been fighting for that for 10 months) because I think that is why he is so aware of how bad off he is, which gets him really depressed and crying for hours. Prior to the Namenda and Aricept he had finally gotten to the stage where he didn't know how bad off he was so his mood was a lot more peaceful and not prone to the crying bouts and rage that happened after he was put on those meds without my consent (or his, and he is unable to make sound decisions because of the diseases).
Good luck making decisions about the proper meds for your LO. Each responds so differently than the next person. Take care, Lynn

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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 15, 2010 8:33 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Treatment options Morphine
LTCVT wrote:
crying for hours


I'm so sorry, Lynn. It makes me cry to think about it. Poor guy.

I agree about the meds. I am through experimenting. Dale is mellow now ... and that's just fine with me.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Mon Nov 15, 2010 9:20 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3305
Location: Vermont
Post Re: Treatment options Morphine
Yes, it is a sad state of affairs, isn't it? I feel so bad for him too and there isn't anything any of us can do but try to comfort him and keep him from feeling pain. It is a terrible way to have to live. The last year and a half have just been awful for him. I just heard through the grapevine that one of his closest friends hasn't visited him in several months because he can't take seeing my dad in such bad shape. That REALLY makes me sad for him. I think if he'd had a somewhat gradual deterioration over many years it wouldn't seem quite as bad for his friends, but he lost so much physically and mentally literally over night, they are just having an awful time adjusting to the "new" Frank. Lynn

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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 15, 2010 10:09 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Treatment options Morphine
I know everyone needs to handle things in their own way but I've always felt that we need to think of the "ill" person. Frank had an aunt in a nursing home for 30 yrs and the last 5-10 yrs we were the only ones that visited, because the others wanted to remember her the way she "was". Frank's brother and wife are going to Maine for thanksgiving and they stop by for lunch on their way back to Sycrause. My last email from my SIL said George was very depressed seeing Frank in his condition, I'm wondering if he'll get to the point that he no longer visits because he wants to remember Frank the way he was. I think the "ill" needs your visits more as they decline, as long as they are aware, than when they were well. Just my feelings.

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Tue Nov 16, 2010 7:17 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Treatment options Morphine
Sadly a person with LBD is aware of their losses and then to lose people on top of the losses is so wrong, I thank the Good Lord everyday that we are a close family and most remained true until my husband's last days, in fact all of our children and grand children and his sister and my sister the nurse was with him for his last breath. None of us wanted to see my husband this way either but............

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Irene Selak


Tue Nov 16, 2010 8:33 pm
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Joined: Wed Aug 11, 2010 2:34 am
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Post Re: Treatment options Morphine
Had a fantastic with dad today and old friends from my childhood days were there and all were having a good laugh when I arrived. These ladies were a breath of fresh air and dad really responds to their sense of humour. One of them brought to my attention that dad had been prescribed a slow release patch for his pain we call it Norspan here in Australia . Buprenorphine is the ingredient so I believe it to be morphine based 5mcg released over 5 days . I just googled it and of course I am worried. He is on selequol 12.5mg three times a day. Is seloquol an antiphyscotic? And it is not recommended for people on blood thinners which I know dad is on because he had a stint put in a few years ago. Is this dose only low? I am going to talk with the RN aswell.But any experience you have had would be gratefully received.


Wed Nov 17, 2010 2:15 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Treatment options Morphine
Kelli,

By "selequol" and "seloquol," if you are referring to Seroquel (quetiapine), yes, this is an antipsychotic. Check on a website such as rxlist.com or drugs.com to learn what interaction Seroquel has, if any, with blood thinners. I wouldn't consider a 12.5mg 3x/day dose to be a low dose...it's not super high either. Once a day at 12.5mg is the lowest dose I've heard of...and that's quite common. What does the prescribing MD say about the dosing? Did the MD start your father off at a lower dose?

If your father is able to tolerate the pain patch, why not stick with it?

Robin


Wed Nov 17, 2010 1:37 pm
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Joined: Wed Aug 11, 2010 2:34 am
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Post Re: Treatment options Morphine
The RN said that 5mcg released over three to five days was an extremely low dose. So we will just sit it out and see if it does give him added pain relief on top of the paracetamol he is still getting as required. she was more concerned that perhaps he may be allergic to the plaster on the patch! Dad was a builder in his day and has bad back pain and he is becoming slightly more stooped so they thought they would try the patch. They are also going to organise to have some x-rays done to see what is going on there. She was also happy for me to organise for him to have a massage. I couldn't find any mobile ones in the area but she said I was welcome to take him to an appointment outside the ALF.


Wed Nov 17, 2010 7:11 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Treatment options Morphine
My dad's morphine was doubled today - he seems to be in pain most of the time now, so they upped his Fentanyl to .50 and his morphine also .50 (or is it 5.0?) Anyway, he was resting comfortably when we left and I'm so glad that they increased it this morning. 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 4:36 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Treatment options Morphine
Lynn, you mentioned battling with the doctors/providers about keeping your father on Aricept and Namenda:

"He has been off Aricept for over a month now, and they say his mood is better. I wish they'd take him off the Namenda (been fighting for that for 10 months) because I think that is why he is so aware of how bad off he is, which gets him really depressed and crying for hours. Prior to the Namenda and Aricept he had finally gotten to the stage where he didn't know how bad off he was so his mood was a lot more peaceful and not prone to the crying bouts and rage that happened after he was put on those meds without my consent (or his, and he is unable to make sound decisions because of the diseases)."

I am wondering the same about my mother, whose pain issues seem to be resolving, yet she still spends much of the day depressed and crying, and now is starting to talk to my sister and me more about how her life is pointless because she can't do anything that's meaningful to her (due to cognitive losses that she recognizes). It does make me wonder whether she is better off on Aricept and Namenda if they are making her more aware of her condition and upset by it.

Does the medical profession generally assume that a dementia patient is best off with these medications, even if they seem to affect the patient's emotion state in this way? How do you address this?

It is so hard to talk with my mother day after day and see her so depressed and weepy. Now that she isn't complaining of pain, it seems that we are dealing with a new set of issues, but no less suffering.

Julianne


Sat Dec 04, 2010 9:33 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Treatment options Morphine
It's really hard to generalize about "the medical profession". There are certainly many medical professionals who really understand the dementias and what is best for the patient, there are people who appear to be clueless and act like they own lots of stocks in pharm. companies and that's what drives their decisions and just push meds, no matter what, and people in between.
There are certainly regional differences in philosophy about treatment (or not) and whether family members should be part of the team or not.
My personal opinion was and still is, I'd rather have my LO be peaceful, have less memory, than have clearer speech and thinking if that also means that they are more aware and miserable. I never was able to convince my dad's psychiatrist or CNPs that he was better off being more "out of it" but more peaceful. They simply did not agree, didn't get it, and subsequently treated me like I was the Grim Reaper. My dad was never taken off the Aricept till about a week before he died. No matter what I did they would not discontinue it, and having POA made absolutely no difference to them. I just didn't want to go the legal route if I could avoid it because I thought his care could get even worse if I got my dad's atty. involved.
If I had it to do over again, I would have gotten the atty. involved in the beginning so it was clear that the POA was a valuable part of the team involved in his care. I'd encourage all of you to continue to advocate for your LO - no one else will do this for them. 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.


Sat Dec 04, 2010 9:49 pm
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Joined: Sun Aug 29, 2010 5:46 pm
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Post Re: Treatment options Morphine
Lynn, I admire you for advocating as well as you were able for your dad, in the face of overwhelming opposition by his doctor and CNPs. It must have been very hard for you to keep trying to do what was best. It is disturbing that his POA was not honored. It is understandable that you did not want to start a legal battle under the circumstances, however.

I am thankful that my mother's POA is honored. Her doctor and even the NH staff do pay attention to my input, though I have not tried to assert that she might be better off without Aricept and Namenda. I do have a sense that taking that position could be misunderstood (the Grim Reaper concept), which troubles me because all I want is what will make her most comfortable. As I watch her world shrinking week by week, her losing the ability to read and do art work, the things she loved, and seeing her crying every day and expressing hopelessness, I really do wonder what is best.

Thanks very much for sharing your insights,

Julianne


Sat Dec 04, 2010 10:50 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Treatment options Morphine
The person in authority who best understood that I only wanted what I felt was best for my dad, were the 2 Exec. Dir. of the ALF, especially the one who is there now. She was very good at trying to advocate for me and my dad. The hospice nurse also understood I was trying my best to do what was in my dad's best interest. Unfortunately the CNP, psychiatrist, and neuro. wielded a lot of power and they were allowed to overrule everyone else, including the dr. who was the head of hospice. I didn't know it worked that way.
No meds ever cured my dad of his extreme sadness and depression at times, nor his high frustration level that went on for months and months. Thanksgiving week he cried or begged us to take him out of the ALF almost all day while we were with him. It broke my heart. His friends left crying. I can truly say today after his funeral, that I feel like I have a million pounds lifted off my heart - I know he is no longer suffering, and he was really suffering emotionally and physically for a long, long time.
Keep fighting for your LO if that is what you must do to get them the best care. 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.


Sun Dec 05, 2010 9:50 pm
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