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Joined: Wed Feb 15, 2012 11:39 am
Posts: 98
Location: Victorville, CA
Post Re: new member
Hi again Andy,
I forgot to mention that the first neurologist we saw prescribed Aricept after giving my husband a verbal test of several questions. He recommended a CAT scan but my husband refused. Getting him to the doctor at all was a battle as he never was a doctor person, still isn't. Later, the neurologist prescribed Celexa, an anti-depressant. When my LO got a cold, I asked the neurologist if he could take Ni-quil along with the Celexa and his office called back and said it would be ok. That was the first time I connected the dots on adverse reactions to medications. And this was a neurologist who was advising me. I quickly stopped the Celexa and continued with the Ni-quil not knowing about this drug's interaction problem. When his hallucinations and delusions weren't getting better, I stopped that too. Reading the books I mentioned in my earlier blog, I believe, has kept me from killing my own husband!! The more informed you are, the better.
Terri

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Terri, spouse of John, officially DX dementia with Lewy Bodies, June, 2012, cognitive symptoms since 2007, active dreams for years before that.


Thu May 17, 2012 9:09 am
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: new member
Terri, yes! You are SO handling this well. Good for you! Your proactive approach will serve you and your husband well. God bless you both.
Pat

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Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Thu May 17, 2012 10:27 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: new member
It's shocking to know how few providers understand why someone with PD or LBD should avoid anticholinergic drugs and most neuroleptics. While most [not all!] neurologists seem to be aware of the medication risks, there are many practitioners who have no clue. These forums have been so helpful! And having the one-page LBD Fact Sheet to give new providers makes it easier to educate them, as well.

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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 May 18, 2012 8:54 am
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Joined: Wed Feb 15, 2012 11:39 am
Posts: 98
Location: Victorville, CA
Post Re: new member
Pat (mockturtle), where do I find this one-page LBD fact sheet?

Pat Snyder, thanks so much for your kind words.

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Terri, spouse of John, officially DX dementia with Lewy Bodies, June, 2012, cognitive symptoms since 2007, active dreams for years before that.


Fri May 18, 2012 9:10 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: new member
http://www.lbda.org/content/publications It's on this page. I keep a copy on the computer and print out a few at a time. My husband's doctors, dentist and SNF all have a copy in his file.

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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 May 18, 2012 9:18 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: new member
Julianne,

I think you brought an important subject up when you mentioned your mom's stuffed puppy, it is so important to pick and choose what is really a problem and certainy not something as innocent as a stuffed puppy, there is so much in this illness that we need to just let go off and save for the really important issues. I think it is great that you are going along with your mom's"companion" !

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Irene Selak


Fri May 18, 2012 2:40 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: new member
Irene,

Yes, it works out better not to rock the boat on the stuffed dog. Because she is beyond reading a book, knitting, doing art, calling on the speed dial phone using the photo buttons or even following a film or TV program, the dog really helps to entertain my mother. To her, the dog is alive and talks! Not being much of a fantasy person, it stretches my boundaries to listen with a straight face when she talks to it and play along, but I do my best.

One caveat is that sometimes she imagines "Georgina" the dog is not breathing (requested that the nurse bring a defibrillator), is sick because it won't eat or go potty (we told her the nurses feed it and take it out very early in the morning before she wakes up), or otherwise is in distress. A few times it has been a little disruptive at the SNF but we are very fortunate to have understanding staff. I think everyone realizes how much worse the situation would be without "Georgina."

I have read that it is best not to challenge a delusion, and I think that is true.

Julianne


Fri May 18, 2012 3:38 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: new member
Quote:
One caveat is that sometimes she imagines "Georgina" the dog is not breathing (requested that the nurse bring a defibrillator)
:lol: Sorry--couldn't help myself!

You're right, Julianne---it's always best never to challenge a delusion but to just play along with them. We had a very complex interaction just this morning. :shock:

_________________
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 May 18, 2012 3:46 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: new member
No problem, I learned to laugh instead of crying a long time ago. What amazes me is how patient the SNF staff are with my mother and her endless delusions and false alarm distress calls. I have become very creative in making up my own stories to counter her concerns.

I hope you didn't need a defibrillator this morning! :P

Julianne


Fri May 18, 2012 7:19 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: new member
Julianne, I, too, am amazed and impressed with the patience and kindness shown by the SNF staff! And they have a whole building full of delusions to interact with! While I may occasionally take issue with them over other things, I never have to worry about their attitude toward the residents. They are terrific! :P

_________________
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 May 18, 2012 9:11 pm
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Joined: Sun Oct 17, 2010 2:06 am
Posts: 63
Post Re: new member
Dr Teng at UCLA has been a great resource for us.


Sat May 19, 2012 1:12 am
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
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Pat,

Yes, I agree, thank goodness for the SNF folks. Ours are terrific. Their patience seems endless and they treat the residents like their own grandparents.

Julianne


Sat May 19, 2012 8:29 am
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: new member
Carol, I am sorry. I forgot to acknowledge your kind comments about how the book helped you. Thank you and I am so glad it did.
Pat

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Sun May 20, 2012 10:24 pm
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Joined: Sun Nov 11, 2012 11:30 am
Posts: 5
Post Re: new member
hi my name is Tania im from the uk and my mother has lewys bodies dementi she is 76 years old, i believe this started about 2-3 years ago i noticed she was forgeting things also it was my sons wedding and she said she would be to ill to attend, my dad and i are finding it so very hard, she will wake him sometimes at 4 oclock in the morning to go and find the children as she doesnt want them playing outside, her youngest child is my brother who is 47 years old, she constantly asks where her baby is she also says there are those boys upstairs and they have been sleeping here also she says my brother has stolen her children and refers to his children as hers and that he has kidnapped them, can anyone tell me is this what happens? its breaks my heart to see this happening to her, can anyone tell me whats the best thing to say when she talks like this do you go along with it or do you say no mum thats not true please help Tania


Tue Nov 13, 2012 6:46 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: new member
Tania, welcome! I'm sorry you are faced with this awful disease but you've come to the right place for information and support. Don't forget to read all the material on the LBDA website, too!

As the posts above show, it's usually best to play along with delusions, as no amount of arguing will change the mind of the delusional person and it just creates hostility.

God bless you for your concern and care for your mother.

_________________
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.


Tue Nov 13, 2012 7:05 pm
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