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 Hello ... an introduction ... 
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Joined: Sat Nov 01, 2008 8:22 am
Posts: 3
Location: North Carolina
Post Hello ... an introduction ...
My mother has been suffering from hallucinations/delusions for a couple of years (really, since Dec. 2006) ... confusion and other issues have made more recent appearances. In May 2007, she had many tests performed by a neurologist, all coming up without any conclusions. According to him, she was "fine." Pernicious anemia happens to run in our family, so she was tested for that, as well. Again, it was a dead end, although her primary-care physician agreed to start b12 shots, anyhow, just to see. She's had those for over a year now and there has been no improvement of any kind. The primary-care doctor thought perhaps she was suffering from paraphrenia ... he described it as a late-onset schizophrenia that sometimes affects the elderly who are isolated ... sort of like cabin
fever. He prescribed, at different times, both risperdal and abilify; however, after researching these drugs and listening to the opinion of a senior-center nurse who questioned the dosage (thinking it was excessive) ... our family decided not to even try these drugs and to find a doctor who knew more about elderly care, in general and dementia, in particular. A new center opened up here with a neurologist who specializes in dementia. We had an appointment yesterday and he suggested she may have Lewy Body Dementia. He has prescribed Seroquel and the Exelon patch. Again, I am not impressed with
some of the information I've been reading about these drugs, particulary because my mother is very petite (just at 100 pounds) and seems to be very sensitive to various medicines ... always exhibiting the rarest side effects! I was really hoping he would have some non-drug therapies/coping strategies to offer and not just more drug prescriptions. *sigh
I just happened on your forum and started to read about coconut oil, which has now piqued my interest. I am also anxious to read about other possible strategies for dealing with the symptoms.
Thank you very much for your consideration and for allowing me to become a member.
Kind regards,

Sat Nov 01, 2008 10:54 am

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Have you tried the Exelon and Seroquel? Does she have problems with those meds?

For treatment of LBD, read Dr. Brad Boeve's "Continuum" paper on the LBDA website. I'm not sure if he mentions non-pharmacological treatment but you can look.

You might mention the name of the (new) neurologist here in case someone is looking for an MD in your area. (Where do you live?)

Sat Nov 01, 2008 11:51 am

Joined: Sat Nov 01, 2008 8:22 am
Posts: 3
Location: North Carolina
We have not tried the Exelon or Seroquel ... we just dropped off the prescriptions. It is a very difficult decision. Things have been going downhill since the first of August ... without going into lots of details, my parents were in an auto accident at the end of Sept. and, as my dad broke his shoulder, they moved into an assisted-living facility. Although the facility, on the whole, is pretty good ... I don't really believe they will monitor my mother closely enough to see if she's having any adverse affects from the medication. Unfortunately, I live about 20 min. away and cannot be there 24/7 to monitor her, myself.
My parents, according to this neurologist, Dr. Bolouri is his name, by the way, are both suffering from mild memory loss. My dad will be 85 on the 21st of this month ... my mom is 82. As I mentioned in my initial post, my mom has been hallucinating for about 2 years. She was a registered nurse ... my dad was a nuclear/mechanical engineer.
My mom was taking restoril to help her sleep and also klonopin as an anti-anxiety medicine. She took these to deal with the depression she felt after the death of my grandmother. This was in 1988. She was still taking these "meds" when she had her first hallucination in Dec. of 2006. This made us start to research those medicines ... and, obviously, we found hallucinations were listed as a side effect. She stopped taking them!
But the hallucinations never went away. The first one she experienced that December involved children. She thought she was bandaging their knees. Often, she thought she was in Sears. She'd think her own clothes were for sale. She thought there were children around she should be watching and taking care of. She thought she and my dad had a younger child who she couldn't really remember. She started not recognizing my dad sometimes. She would think that he was either a relative or sometimes just some old man. She would think my dad had left and had gone out and stayed out all night and she would get really angry with him and feel so hurt. It made me feel so bad because she would cry that he was gone and all the time he was right there ... only she couldn't "see" him for who he was.
She would get confused about her house, thinking she had another house just like it and this was a duplicate house.
She started wandering around outside. One time, during the middle of the night, she "followed" one of her hallucinations outside and down the block. We don't know how long she had been out there before she came back and rang the doorbell. Right before the car accident, she rang the neighbors' doorbell looking for children she thought she was supposed to be watching.
My dad could not adequately look after her. He has superficial, non-invasive bladder cancer and is rather weak. He goes to bed a lot and never hears her when she gets up. She was always the caregiver, so he can't seem to grasp the notion that there's something wrong with her ... he is in complete denial.
I really hesitate getting into any more "medicines." I know they seem to have helped a lot of people, but my mom is very sensitive to everything. She will have some weird side effect and I'll do a little looking up on that particular medicine and, sure enough, that side effect will be there ...
Anyhow, since there really isn't a definitive test for LBD (or for many of the elderly dementias), and it appears that there isn't a real understanding of why certain drugs seem to "work," I don't feel comfortable encouraging either my parents (my dad was prescribed Exelon, too) to take more drugs, particularly not at this facility. I have found my mom's prescription vitamin on the floor twice now when I've gone to visit.
Well, I will keep searching for other alternatives and I thank you for your response.
I read one post where the poster talked about how she feels she's lost her mother. I know just how she feels. As the youngest of five children, I was always the closest to my parents. Some days my mom and dad are really good and I just hug them as much as possible. Other days, she and my dad both seem to distrust me and argue about things like why I'm paying the bills and they aren't ... and this sort of thing. My dad still wants to drive. They both want to move back to their house and get out of the assisted-living facility. They have called rental cars and taxi-cabs. It is quite overwhelming for me. All of my siblings live in other states (California, Indiana and Florida). I feel so stressed that I will not make the proper decisions for them ... for my dad and his cancer ... for their minds ... for their physical/emotional needs. Then I feel like I'm neglecting my own family, too. (Even my dog!) *sigh. I find myself crying a lot! (That ... and praying a lot, too!!)
Gosh! I'm so sorry I'm rambling. I'll go now!


Sat Nov 01, 2008 12:24 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
I agree that monitoring someone, particularly when they are just starting a med, is very important. My father was also in an ALF. I did two things: I hired people to see him at specific times every day (and they would report anything out of the ordinary), and I called the morning MedTech to learn how he'd done overnight. (Most of his meds were given before bed.)

I'd look at the side effects of these meds, of course, on a website such as Exelon has mostly GI side effects, which are largely eliminated by the patch form. You could also do a search here to see if anyone hasn't done well on Exelon. I'm not aware of anyone having a terrible reaction to Exelon.

Seroquel is a different matter. Of course, it's always preferable to only make one med change at a time.

Sat Nov 01, 2008 2:49 pm

Joined: Sat Oct 06, 2007 4:28 pm
Posts: 781
Location: LA
Post Medicines??? Yes or no?
Oh, dear, dear Nean, Bless you for what you are doing. I, too, resisted drug therapy for my 89 year old husband for his condition which would read, if I told the story, very much the same as yours and many others on this forum. I tried to do it alone. I let it go until he "hit bottom", fighting for hours with the bad men he imagined were hurting his feet. He held on to the table thinking he had captured one of them. He did not dare let loose his grip because he thought now that he had made the bad man angry if he let him go, the culprit would harm me, and he was begging me to leave before he released his captive. Then at the locked down facility, the kindly psychiatrist worked with drugs very much like Dr Boeve recommends, and I watched [like a hawk]. We did as suggested, "start low and go slow". We added some and removed some. It turned out to be rather expensive doing it that way so if a limited supply could be prescribed at the beginning until you see how they are working it would be good. Fast forward eight months. Tonight my LO is sitting here in front of TV enjoying The Lawrence Welk Show. I pushed his wheel-chair into the kitchen a short while ago and gave him a hair trim then he decided he would wait a while before going to bed. Of course, the night is young so we may have a few interesting moments before he finally goes to bed for the night, but for now, this is nice.

The meds he is on now are Exelon Patch and Namemda and Gabapentin for the LEWY Body symptoms... also a few others for various medical conditions such as diabetes, prostate and severe UTI prevention. He is blind so we have numerous eye drops. This is a man who could not tolerate even Lipitor! The Seroquel puts him in a stupor/sleep for 22 hours so we use Melatonin for restlessness and frightening hallucinations. When we used enough medication to rid him completely of the hallucinations/illusions, being blind, he saw ONLY black and he begged me to turn on the lights. I could not do that and I was very sad. When the cute little imaginary blond girl and her family re-appeared to him, I felt a wave of happiness and they have since become as much a part of our household as our furniture. He sees many things that no one else sees but if it keeps him satisfied, who am I to try to take that happiness away. What I'm trying to tell you, Nean, you may go through trying times as you finally reach a good medicinal program for your loved ones but in the end it will be so comforting. Just know that you will not find "one size fits all" you will need to do more hard work than you thought possible and you will worry every step of the way, but the effort could pay off with comfortable days.

We care!!!!


"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.

Sat Nov 01, 2008 8:27 pm
Its a no wonder that you feel so torn emotionally between your own family and 2 aging parents with such major health issues. As to the medications we used the exelon and that was before the patch came out and yes there were some stomach issues but we did work through them and it was a wonderful drug , it really helped with the major Hallucinations and delusions and from all that I have heard as of recently the patch really has no stomach side effects, the seroquel also was a good drugs for us with no problems and yes some people can't take it but as it has been said here all meds should be started low and slow. Its really all about finding the correct combination for that person.

Sun Nov 02, 2008 12:40 am

Joined: Thu Aug 30, 2007 6:15 pm
Posts: 231
Location: Charlotte, NC
Hi! Dr. Bolouri is my husband's neurologist and I like him very much. He is very attentive and even calls me back HIMSELF and speaks with me after hours. We have another one in Charlotte that I did not care for at all, very cold and calls were returned in weeks not hours. What facility is your mother in? My husband is in one and has been for a year, and I have fought the fight for him. However they do seem to GET LBD now, as first they thought everyone had alzheimers. Of course, I go every day. Robin's suggestion about speaking with the med tecs is a good one. At first when I asked they would say "the same" finally I had to say "what does that mean" be more specific...they are not crazy about me but I am not there to be buddy buddy with them. I walk a thin line sometimes but have been successful in routing out the bad ones and advocating for my husband.

Nancy Salvadore
Husband Tony
Diagnosed Nov. 21,2005

Sun Nov 02, 2008 1:28 pm
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