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LTCVT
Joined: Fri Jan 15, 2010 9:33 pm Posts: 2825 Location: Vermont
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 Re: Finally, some peace
My dad's namenda is finally being stepped down and discontinued. The CNP says "it's no longer needed since he is at end of life". I think he would have been much calmer all spring, summer and fall if he had not been on this at all, but I gave up the fight to have him taken off it a few months ago. I just could not deal with the 2 CNPs anymore. They weren't budging and going through the legal process was too daunting while I was exhausted and ill myself. Anyway, for those of you whose LOs are put on several meds at a time, I'd recommend asking the dr. to just add ONE at a time, monitor the patient's response, and make changes (if necessary) accordingly. 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.
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| Wed Nov 17, 2010 8:58 pm |
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mockturtle
Joined: Wed Dec 30, 2009 1:46 pm Posts: 3008 Location: WA
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 Re: Finally, some peace
You're so right, Lynn! This would seem elementary, wouldn't it?
_________________ Pat [67] married to Derek [83] for 37 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011.
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| Wed Nov 17, 2010 9:13 pm |
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LTCVT
Joined: Fri Jan 15, 2010 9:33 pm Posts: 2825 Location: Vermont
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 Re: Finally, some peace
It does to many of us, but it made no sense to his psychiatrist or CNPs. They just pile them (several meds at a time) on, don't consult at all with the family, and then threaten to sue family members who try to get them off all these meds that we see have made them worse.  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.
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| Thu Nov 18, 2010 8:53 pm |
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galias
Joined: Sun Sep 05, 2010 4:46 pm Posts: 29
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 Re: Finally, some peace
LTCVT, Glad something positive for U. I have found out at the ALF my Mom is at has a Dr. that makes rounds once a month. She is a geriatric,DO but one Dr. would be so simple. Serioulsy thinking of making a consult with her. this neuro,psych & then family Dr. is too much. Although I am getting some reaction re: her Aricept. But she had side effects before & he had her off of it now put her back on. Got it D/C for now but see him after Thnaksgiving & the nurse suggested trying Exelon patch. Again my Mom & myself see nothing helping her but making her feel sick,dizzy headaches etc. Mom just would like to take her thyroid pill & her Ativan. : ) Hmmm does she know something the dr. doesn't?
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| Fri Nov 19, 2010 2:39 am |
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Leone
Joined: Wed Oct 28, 2009 11:53 am Posts: 969 Location: Ocala, FL
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 Re: Finally, some peace
Galias: I wouldn't want to take a pill that made me 'sick, dizzy, and head achy,' either. I think your mom must know something the doctor doesn't..... FOR SURE.
I'm thinking that LESS is BETTER.
_________________ Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011
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| Fri Nov 19, 2010 9:06 am |
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mockturtle
Joined: Wed Dec 30, 2009 1:46 pm Posts: 3008 Location: WA
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 Re: Finally, some peace
Patients have legal rights in this country. When I admitted a patient to home health services I had to read their 'Bill of Rights' to them and/or their POA and make sure they understood them. One of those rights allows them to refuse any treatment [even if a physician ordered it]. This applies equally to someone given legal health care power of attorney for the patient. Bear in mind that a physician may choose not continue to treat a patient who refuses his/her orders and that a facility may discharge a resident who refuses medical treatment that may make care more difficult.
If you and your mother observe that a certain medication is causing more problems than it solves, I would consider the option of discontinuing [or refusing] that medication. Before doing so, I would discuss it with the ordering physician and state your case, emphasizing quality of life. Good luck. I think Lynn ran into some practitioners who were unaware of these rights.
_________________ Pat [67] married to Derek [83] for 37 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011.
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| Fri Nov 19, 2010 10:46 am |
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LTCVT
Joined: Fri Jan 15, 2010 9:33 pm Posts: 2825 Location: Vermont
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 Re: Finally, some peace
Even when I'd remind my dad's drs. and CNPs that I had the legal right to do what I thought was best for my dad, they'd either say they didn't care, or they would d/c his care, like Pat said. Only when I went to his atty. several times and told him what was going on, and reiterated to the the CNP that his atty. was well aware what was going on and I was ready to file a court order against HER, did she back down. She still didn't decrease or eliminate all the meds for a while, but she did take him off several like blood pressure meds, cholesterol, etc. just after our very heated discussion over the phone. Just about everything with her has had to be a fight. Hope the rest of you don't experience this, it just adds to an already very stressful situation. 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.
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| Fri Nov 19, 2010 11:26 am |
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Leone
Joined: Wed Oct 28, 2009 11:53 am Posts: 969 Location: Ocala, FL
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 Re: Finally, some peace
When Dale's father was dying (pancreatic cancer), he was hooked up to a room full of machines. He had DNR instructions and yet, the hospital would not disconnect him. Dale is an attorney and threatened to sue them. Only then did they agree to disconnect his father. It was traumatic. We think the cost to the insurance company for all his care was the reason they wanted to continue to allow him to lie there - even though it was obvious that his brain was gone and he was not coming back.
When my father was in a similar condition - hooked up to machines after heart surgery, he wrote notes saying, "Get me out of here! Call 911." The hospital finally released him to go home to die. He then lived another fourteen years. We still have the bill from the hospital dated 11-29-88. The total is $228,895.53. Imagine what that bill would be today.
_________________ Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011
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| Fri Nov 19, 2010 11:50 am |
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irene selak
Joined: Sat Jan 03, 2009 2:59 pm Posts: 1941
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 Re: Finally, some peace
This is why it is so very important to have the person's final wishes written, back in the day people didn't do that like today, I think even if you do to a hospital for a MRI they ask do you have a living will.
_________________ Some forum members may be intense in sharing what they have found to be useful/recommend certain resources.While meaning well, some comments may seem rather strong. Please contact me with any concerns. Irene Selak LBDA Forum Moderator http://www.lbda.org
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| Fri Nov 19, 2010 12:09 pm |
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robin
Joined: Fri Aug 11, 2006 1:46 pm Posts: 4811 Location: SF Bay Area (Northern CA)
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 Re: Finally, some peace
Gayle, Has your mother been taking Ativan for awhile? It can have some bad side effects for some people (dizziness, etc). Robin
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| Fri Nov 19, 2010 5:48 pm |
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