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 Finally, some peace 
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Finally, some peace
After 5 months of asking, begging, pleading, and being threatened with a lawsuit by my dad's CNP, his meds have been changed, and the hospice nurse is reporting that for the first time he is laughing, smiling and joking pretty regularly. I am so glad for my dad that he is not in the awful, agitated, angry state that he's been in for months. His personality is getting back to who he was.
It does, however, make me really mad that it took 5 months of misery for my dad, and all the headaches the psychiatrist and CNPs put us through to get his meds changed.
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.


Fri Sep 10, 2010 4:12 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Finally, some peace
Lynn, what were the meds he was taken off? I'd like my husband to laugh, smile and joke, too! :lol:

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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.


Fri Sep 10, 2010 4:43 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: Finally, some peace
So far, they have reduced his Ativan - not sure if he's off it completely yet, and increased his Zoloft. Apparently there is very noticeable difference. Those seem simple enough to change, right? Also, I suggested that his Namenda and Aricept be reduced or stopped since his anger and frustration got so much worse afer he was put on those. And yet, my request to have his meds changed resulted in the psychiatrist ignoring me, threatening to quit, and the CNP telling me she was hiring an attorney to charge me and my sister with endangering my father's life. How is that endangering my dad's life? This was after agreeing to decrease these meds back in May, which she never did. I've spent the entire summer fighting, and finally, we have some good results.

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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.


Fri Sep 10, 2010 5:37 pm
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Joined: Wed Sep 30, 2009 8:25 am
Posts: 227
Post Re: Finally, some peace
Yay, for you! We are our loved ones' best advocates. Sometimes less meds are better. My MIL improved, too, after reduction in some of her meds. Keep the faith!

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Donna (age 56) caregiver for mother-in-law Margaret (age 88).


Fri Sep 10, 2010 8:20 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Finally, some peace
Lynn,
So glad that things seem a bit better, I too am a believer that lesss is often better!

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Irene Selak


Fri Sep 10, 2010 9:43 pm
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Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Re: Finally, some peace
Lynn, good for you! It has been such a struggle. I'm glad that you are seeing good results.

Annie

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Annie, daughter of brave Marie, dx 2007 and in ALF


Fri Sep 10, 2010 9:50 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: Finally, some peace
Thanks so much everyone. It has been good to know my friends here have been cheering me on as I have had to go to battle with the psych. and the CNP. I wish it had not had to be a battle, though. But, at least it's done now. 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.


Fri Sep 10, 2010 11:57 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: Finally, some peace
Just talked with the hospice nurse, and she was practically ecstatic about my dad and his joking and laughing. I said "this is why I have been working for 5 months - to get him at least partially back to who is was. Why did this have to become a fight? Why didn't someone do something all these months I've been asking them to change meds?"
It's his 89th birthday today, and she said he really enjoyed the flowers and balloons we sent. He's going to be really happy tomorrow to see one of his grandsons. Life is a little better today, at least for the moment! 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.


Thu Sep 16, 2010 6:21 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Finally, some peace
That's great news Lynn!

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Irene Selak


Thu Sep 16, 2010 7:34 pm
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Joined: Mon Mar 08, 2010 9:32 pm
Posts: 120
Location: Dumfries Va
Post Re: Finally, some peace
Great News Lynn. I had to diagnose whwat my wife's problem was when she started leaning backwards. End result was the addition of Sinemet 25/100 from 2 X daily to 3X daily and adding Azilect caused the imbalance. The damage done has been pretty much reversed.


Fri Sep 24, 2010 2:41 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: Finally, some peace
Mac -glad your wife's symptoms reversed. Don't you feel like you need a medical degree about half the time? Or a pharmacology degree? It's amazing how much time we have to spend trying to figure out what's wrong, how to fix it, and how to get the health care people to agree to making changes. I thought that's what THEY were supposed to do! 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.


Fri Sep 24, 2010 2:47 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Finally, some peace
It's the first thing I look for when a new symptom arises---medication changes. And I wonder why any thinking physician would make more than one change at a time. As a former researcher, even I know you only alter one variable at a time [or, at least, construct your experiment so the variables can be easily isolated, which you can't do with just one subject].

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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.


Fri Sep 24, 2010 2:51 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: Finally, some peace
Very good question Pat, and one I've been asking for quite a while. Not only "why would you put a person on more than one med at a time?" but also "why wouldn't you monitor what is happening to the person since the intro. of new drugs and then make appropriate changes when there are problems that appear to be cause and effect?"

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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.


Fri Sep 24, 2010 4:04 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Finally, some peace
Exactly, Lynn, and since your father is in a facility, it should be assessed by the staff, preferably by the RN. Assessment is the first step of the nursing process and evaluation is the last. One always evaluates the results of an intervention to gauge the efficacy. I wonder if, in most ALFs, this is ever done. I wonder if most doctors ever follow up on the addition of a new drug. More than likely, people just keep taking what is prescribed, doctors assume it must be working, and the pharmaceutical companies just keep raking in the bucks.

_________________
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.


Fri Sep 24, 2010 4:14 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: Finally, some peace
I would say there are a lot of steps in the process that aren't done. When the head nurse, an RN, argues with me and tells me my dad doesn't even HAVE an agitation/anger issue, it leaves me speechless! Then her misconceptions get passed on to CNPs and drs., and I think that is a huge part of the problem we've been having. Her predecessor knew my dad really well and there was no question she was in tune with what was happening but she got mad and quit because this other person became her supervisor.
So, the family is left to deal with someone totally out of touch with reality. And, she kept blaming his agitation on "family visits". Until I sent a list of all the other friends and family members who have called me while I'm 500 mi. away to ask me why something hasn't been done to help him be less agitated, no one wanted to listen. I swear some people just do not want to hear what family members have to say at all, and they sometimes treat us like we are idiots.
At least tonight when the head nurse called she referred to his agitation level. Hallelujah - she actually thinks he has an issue now!

_________________
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.


Fri Sep 24, 2010 7:57 pm
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