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 Boy Who Cried Wolf 
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3432
Location: Vermont
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Just got a call that my dad's psychiatrist is putting him on Seroquel, to hopefully get him a little more relaxed so he won't be yelling Help when he doesn't need it and getting so upset with the staff. He was a handful yesterday after he fell because he didn't want to go to the hospital. I am hoping this helps him.....
The Aricept has really helped improve his speech and cognition. The flipside is he is now back to being more aware of how awful his health is. It is a double-edged sword. He can communicate better but is more depressed and frustrated because he is more aware of reality. This is just horrible!


Tue Mar 23, 2010 6:03 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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Here's hoping Seroquel will make him more peaceful and yes it is a double edge sword for sure!

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Irene Selak


Tue Mar 23, 2010 6:13 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
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Have others experienced this - where the meds made the person more cognizant about their state of health (and helplessness?). Irene - sounds like this is something you experienced with your husband? Lynn


Tue Mar 23, 2010 7:36 pm
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Yes Lynn, We had days where he was very aware and others not so much, the exelon helped a great deal but the agitation was anmother thing very hard to get a handle on, The seroquel worked well for us and I was blessed he didn't get up at night at all, At 7 each night I would get him in bed and that was it until 6 the next morning ! I do hope this helps your dad!

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Irene Selak


Tue Mar 23, 2010 8:10 pm
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I sure hope it does too Irene. I felt like he was sort of getting into a routine and getting used to his new life and environment, and accepting what was going on. But I guess he never really did and now that he is more mentally functional he sees how physically unfunctional he is. It is so sad I just can't stand it!


Tue Mar 23, 2010 9:22 pm
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Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post We've had this happen, too
Lynn, My LO has been on exelon now for about 2 months and has shown an improvement of about nine months of cognition. In other words, her thinking is about where she was nine months ago. She had given up reading and writing...now I find little notes in her room and on her calendar that she could not have written before. She wants to go to the library to get some books, children's books, but the point is that she can read again. The flip side is that we have found her deep in depression because she realizes there are so many things she cannot do. Raise the venetian blinds. Turn the light on. Find the toilet. Go out on her own.

The overriding, premier truth of my LO's condition is that SHE IS AWARE. She knows about this disease. She read about it in her Merck manual before I "lost" the book. She remembers.

Has anyone read the book "Flowers for Algernon" by Daniel Keyes or seen the award-winning film "Charly"? It is about a mouse who undergoes surgery to increase his intelligence and a human test subject who undergoes the same surgery, named Charlie. It is a wonderful book that follows Charlie's increase in intelligence and ultimate regression to his previous state. Charlie is aware of what is happening to him.

My LO's experience may not be as dramatic but it follows the same path. As a caregiver, I cherish these times of clarity. It means a lot to me to have my LO back the way she used to be. But I can't fool myself into thinking that this is not a progressive disease because it is. I'm aware too and it breaks my heart.


Tue Mar 23, 2010 10:03 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
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My husband started on the Exelon patch in March of 2008, so it's been two years. We did see an improvement right away in both his cognition and his agitation. It's impossible to know if there is any continued effect because we can't know where he would be at this stage without it.

I might add that the Stalevo [carbidopa/levodopa/entacapone], which he has been on for five years, also helped his cognition markedly and each subsequent increase in dosage yielded an improvement [only temporary, alas!].


Tue Mar 23, 2010 10:14 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
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If only his physical state could improve like his cognition, that would be a different story. He seems so much more aware of just how unfunctional he is, or it bothers him more or something. I'm hoping his admission of feeling isolated might make him decide to participate in some of the activities and outings the ALF has. I have asked them just to make him do stuff but they say it is illegal to force him to go on field trips, come down to the activities room, etc. :cry:


Wed Mar 24, 2010 5:03 pm
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Lynn, is he on any kind of carbidopa/levodopa medication? That helped my husband more than anything else, both physically and cognitively. When he was off his meds yesterday for his colonoscopy, we sure noticed the difference! He could hardly move. Today he's getting around pretty well again.


Wed Mar 24, 2010 5:17 pm
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I do not believe he is. I need to contact his CNP and ask about this. I was under the impression there wasn't anything that could be done about his physical issues - having spent last summer and fall dealing with various drs. who told me nothing would really help him..... Thanks for the ideas. Lynn


Wed Mar 24, 2010 7:21 pm
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Location: Vermont
Post Re: Boy Who Cried Wolf
Now my dad's latest thing is to get himself out of bed onto the floor and then yell for help. The past 3 days he has done this. It's amazing that he can't use his arms enough to feed himself, or hold his own weight on his legs, but somehow he gathers the strength and willpower to get himself out of his wheelchair and out of bed. They say they can't use the bedrails on both sides because it would be considered physical restraint (no kidding) and the state of MD does not allow people in ALFs to have any kind of restraints.
So, this puts us in a very precarious place. If the ALF can't keep him in bed or his wheelchair anymore, then I think we are going to be told to move him to a SNF, and soon. If that happens, we will have nowhere near as nice a place, a shared room with hospital furnture, and for TWICE THE PRICE!!! People in MD do not think he could survive a 9-10 hr. trip here so it looks like moving him is not going to happen.
I'm hoping the hospice nurse can come up with a solution tomorrow when she gets there. 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.


Sun Sep 26, 2010 11:51 am
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Boy Who Cried Wolf
Lynn, a lot of ALFs won't even keep residents who aren't independently ambulatory, either on foot or by wheelchair or power chair. But, considering all the difficulty you've had with this place, maybe another facility might be a positive move. Albeit expensive. You may have to try to sell his house--is he resisting the idea?

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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.


Sun Sep 26, 2010 12:43 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Boy Who Cried Wolf
The house is in a trust - can't sell it. He has the $ but I am trying to be conservative in spending because I don't know how much longer he will live, so I don't want to run out of $ any time soon.
I honestly don't think the ALF is the problem (a couple of nurses there have not been great, but the current RN is finally coming around.) I really like the place, it's the CNP and her colleagues who have been a big problem, and they are a private company. Am I not seeing something that you are seeing, Pat, that is wrong with the ALF? You are not the first person who thinks the ALF is the problem.
BTW, I'm pretty sure my dad had this pressure sore when he got there but no one in the hospital or in the rehab facility noticed it because it was small and kind of under the base of his tailbone.
He is now hallucinating and thinking people are after him. He was completely incoherent in thought and speech when I just tried to talk with him, and when he got off the phone the CG got on and told me he's crying uncontrollably. She was going to try to comfort him and get him back to sleep. :cry: 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.


Sun Sep 26, 2010 2:13 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Boy Who Cried Wolf
Lynn, I only know what you have told us about your experiences with them and what you have told me privately. I was just pointing out that ALFs have certain criteria that have to be met for a resident to be there. 'Assisted Living' implies just that--assisted, whereas your father seems to be almost total care. Maybe I'm not getting an accurate picture.

I'm so sorry for you that you have done so much driving back and forth and now, when you're back home, all hell breaks loose. It seems to me that you have to evaluate whether or not this facility can handle your dad's increasing needs. Hope so! God bless! I'm rooting for you and your poor dad.

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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.


Sun Sep 26, 2010 3:08 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Boy Who Cried Wolf
Thanks Pat for your words of encouragement. I just spoke again with the head nurse and she said he is paranoid, hallucinating, swearing, and crying a lot. She is going to contact his CNP and hospice and try to get them both in in the morning. For some reason, she is under the impression that I don't want him on any meds, because when I really pushed her about why they aren't doing more to dull his pain she said "I thought you and your sister didn't want him on any meds." People don't listen, and they don't read. I think she's picked that idea up from the CNP that we have asked NOT to take care of my dad because she just doesn't get most of what we say, either in person or in letters.
We have made it totally clear we don't want him on any life-prolonging meds, but whatever comfort meds he needs they should be administering appropriately. This is clearly spelled out in several letters to the drs., CNPs, hospice and ALF director. How complicated is that?

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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.


Sun Sep 26, 2010 3:44 pm
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