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 Paranoia 
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Joined: Mon May 04, 2009 11:49 am
Posts: 18
Location: Ontario, Canada
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Post Paranoia
Since my mom has returned from her first short-stay in a nursing home she is very paranoid. She is afraid and sees the potential of harm to her everywhere. She believes that I want to do her harm. Even though I try and change the subject, she can't seem to get out of this place in her mind. She has been removed from the low dose exelon and seroquel (she was unable to have these meds increased because of reactions) and is now only taking respiradal (l/4 of a milligram in the morning and 1/2 milligram at night) The evening meds relax her and help her to sleep. The meds in the morning either do nothing, or are escalating her paranoia. God, I wish I knew. The morning meds were added (doctor's advice) this week when I called to ask what to do about my mom's paranoia. Does anyone have any ideas of what I should do. It's Sat. so I won't get her doctor today. If this continues should I request that she go off the respiradol? It seems like we are running out of options. I was told that it would take between one month and three to see an improvement (that's if the meds works). She has been taking it for 3 weeks now. I just don't know. Are these Lewy Body symptoms or the meds?

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Rosie,Ontario


Sat May 30, 2009 6:43 am
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Location: Ohio
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Risperdal was very good for my DHs paranoia. It was bad because in addition to his suspicions about me (poisoning his coffee among other things) he was terribly paranoid about the neighbors. Subsequently word got back to a few of them & they were terribly upset. He was hospitalized & put on risperdal (seroquel heavily sedated him) & with only one adjustment....going from 3 mgms to 2 mgs. he has done extremely well. He's been on it for almost 2 years. He's also on an antidepressant & ativan to help him sleep. You'll probably have to experiment with the dose altho' starting out slowly is the best way to go. It took about a week to help. Incidentally, one of the side effects with risperdal is orthostatic hypertension which is also why his dose was reduced. Currently he's doing fine in the BP department. My BP should be has good as his BP! Dee


Sat May 30, 2009 8:09 am
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Joined: Sat Jan 31, 2009 7:21 pm
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Location: Ohio
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I forgot to address your question completely. Sorry. I'm not sure if the continued paranoia after 3 weeks is the risperdal. My guess is that the medication needs adjustment after talking to the doctor. But then again, she may need a tad more or something else. Finding the right medication & the right dose is a tough thing to do as many on this board can tell you. We've been lucky so far. I hope you can find the answer. Trying to talk someone out of their paranoia is almost impossible in my experience. And hearing it is even worse. I hope you can find some relief until you can reach to doctor. Good luck. Dee


Sat May 30, 2009 8:15 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
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Dee, I've been there as have most others, my husband has LBD. Two years ago we were living a nightmare. We tried several meds, and finally settled down with Zyprexa, not usually recommended, but it worked for Frank and Exelon gradually worked up to 6mg 2xdaily. This past Tuesday we changed form the Exelon tablet to the Patch 9.5mg. It took us back to the nightmare days. I emailed his psychiatrist and explained what was going on and he suggested, if possible, give it a few days. He was right, today we are almost back to what we called "normal". I feel very lucky to have his Dr., we stay intouch with emails, he ALWAYS gets back to me within a couple hours, regardless off what day it is.

I found the paranoia was the most difficult part to deal with, at the moment, that is in the past. Hopefully your neighbors understand and will keep a watchful eye and be ready to help if necessary

Take Care, Gerry


Sat May 30, 2009 9:07 am
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Joined: Mon May 04, 2009 11:49 am
Posts: 18
Location: Ontario, Canada
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Post Paranoia
Hello Dee, Thank you for your comments this morning. I love this site and all of you for being so kind. I wish I could offer help to someone, but I'm afraid I'm still so overwhelmed with it all. Well, Mom was less agitated this morning, but I am "walking on eggs" trying not to make her upset. She doesn't understand why I'm giving her these meds (thinks I want to get rid of her)and I have quite a time everytime I give them to her. She wants to know how much longer she has to take them. She asked, "Do I have to take these for the rest of my life? and "Can't you see what they are doing to your mother?" She has always been good at guilting me LBD or not. The paranoia has mellowed a bit, but I know from what she has said that her paranoid thoughts are lying just under the surface. It was nice to hear that the risperdal has been positive for your husband. Hopefully, I can report the same very soon. Thanks again Dee.

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Rosie,Ontario


Sat May 30, 2009 2:20 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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Rosie,
When dealing with with sudden issues such as your Mom's one has to look at what's new that has changed for her, in her case I would have to say it is the med changes, you don't mention why she was taken off her orginal meds other than they couldn't be increased, we know that the Memory type drugs are the best for people with LBD, so I would be thinking perhaps another drug in that class of meds and I would also very much suspect the Risperdal in her case if is new.
Good Luck with all of this and I hope you are able to contact the doctor and get to the bottom of the problem.

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Irene Selak


Sun May 31, 2009 7:59 am
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Location: SF Bay Area (Northern CA)
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I think Irene is right that you have to look for some cause -- eg, infection.

However, paranoid delusions are part of LBD. And, other than the Risperdal, it doesn't seem she is receiving any treatment for delusions.

Have you read what the Boeve "Continuum" paper has to say about treating psychosis (delusions)? What about trying Aricept or Namenda? (You can find the paper on lbda.org.)


Sun May 31, 2009 12:33 pm
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Joined: Mon May 04, 2009 11:49 am
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Location: Ontario, Canada
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Post Paranoia
Mom was diagnosed approx. 2 years ago. She has been suffering with hallucinations and delusions since then. The doctor has tried giving her Exelon, Seroquel and most recently Ebixa. None could be given at the doses recommended, (a) she would refuse more meds and (b) she couldn't tolerate the meds. She would have jerking episodes, headaches, blood pressure instability. Even now she has dizziness. While they did help with clarity (less confusion), the hallucinations and delusions were never conquered. They removed these meds during the respite and started her on Risperdal. Some old friends came by to visit this afternoon not knowing about my mom's situation. She took the opportunity to tell them all sorts things that never happened. In fact, as they were leaving she expressed her fear of me. I believe that's the change you both are talking about. Her short stay was the ultimate betrayal. While she did initially agree, now she has built an entire story around her stay including the doctors doing research on her. Getting back the the old friends, Oh, my God. I had to take them aside and fill them in. A disease like Lewy Body is difficult to explain in a few minutes. Most people just don't get. She can seem like her old self one minute and then switch to that Lewy person in the blink of an eye. I'm always on edge wondering what is going to come next.

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Rosie,Ontario


Sun May 31, 2009 7:25 pm
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Location: SF Bay Area (Northern CA)
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Rosie,
I know of no way to eliminate hallucinations and delusions (that are part of LBD) without medication.
Robin


Mon Jun 01, 2009 9:34 am
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Location: Henderson, Nv.
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Rosemarie,
Robin is correct. There is no sure way to eliminate the hallucinations and delusions...medications can help to a point but even then LBD patients can and do experience these symptoms. Its such a tricky thing. One medication can help to eliminate them but can cause other symptoms. In some cases its a trade off. At times it is just a Lewy episode rearing its ugly head. My LO too sometimes tells people I am mean, stories that are not real, etc. At times it hurts but I have learned to live with it. Tell your friends and neighbors to log on to this site and read what all of us are going through...they will soon understand...and if they don't, there is nothing you can do about it. A real friend will learn about the disease and support you.
I have 2 new caregivers here..a couple of hours a day 3 days a week. Just enough so I can get out to the store or whatever. They now know about LBD as does their supervisor...we discuss it at length so they are of full understanding. It is up to us to educate them and others.

My heart goes out to you and all of the others...this is a difficult journey.

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Dianne C.


Mon Jun 01, 2009 3:38 pm
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Joined: Sat Oct 06, 2007 4:28 pm
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Location: LA
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Post Patience and patience
My entry will not exactly address Rosemarie and her mom but it may be of help to some others along this same problem in the future.

Morning breakfast along with exelon patch, namenda, sm. aspirin, and Avodart. I noticed he did not drink his cup of milk so I covered it with foil and returned it to the fridge. This is usually a good time for Mr B., but not today. The big bad birds came out in full force... darting at his head and nose in particular. I let him deal with those for a while, hoping he would get tired, he had his head covered and kicked at the birds with his feet periodically. When things ramped up, I went to him singing softly and chasing the birds away, I told him I had watermelon on his table. Thankfully he removed the head covering enough to enjoy his watermelon with me telling the birds to go away, the treat was all for Mr B. and if I started feeding them, they would want to hang around. He wanted coffee. Sure, I ran to get coffee... during this time I speak very little... just enough to let him know I am with him and I love him. Mr B. began feeling around on the tray for more, I ran to the kitchen, returning with his cup of milk from the fridge and two slices of toast with grape jelly and oleo smeared on . He ate that and I added two gabapentin tablets as a booster dose for the restless legs.

I gave Mr B. his shaver and bottle of Electric Shave. He takes a long time to apply the liquid to his face and then another long time to shave.

No talk of birds for the moment. He finally returned to bed covering up his whole head and tucking the covers all around him while I return to my chores. Looking up at the monitor, I see he is moving towards the foot of the bed towards the bathroom... I run to standby for assistence, if needed. None is needed. I stay in his room and wait, folding sheets and towels as I wait.

After what seemed like an eternity, Mr B. emerges from his bathroom, face a little wan but he puts himself to the side of his bed alright. There he sits and says his prayers. I notice a rather strong aroma from the little bathroom and, sure'nuff, there in the commode is a beautiful specimen of bowel movement! I will let it soak a while before flushing again.

Mr B. sleeps. I watch and consider another lesson in observing sequences. cause and effect. For every action there is a reaction.

This afternoon no constipation = no birds.

DrP

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"See this lady she's 85 but she's nice", This is the way my husband, Mr B., introduced me in 2006 to the people only he knew. Death due to pneumonia. Lewy Body Dementia diagnosed post mortem at Mayo Clinic in Jacksonville Florida.


Mon Jun 01, 2009 5:53 pm
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