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 I call her "Cybil".... 
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Joined: Sun Mar 14, 2010 1:11 am
Posts: 20
Post I call her "Cybil"....
:( Hi, My name is Kimberly and am a neice and current primary caregiver to my 67 yr old aunt Teresa who suffers from Parkinsonism, Lewy Body Dementia, Scoliosis, Scleroderma and osteoarthritis. I have been her cargiver since 2009 of Febuary, she weighed 165 at that time, Today she weighs only 95pds. I hope Im sharing my story in the proper page. I have just brought her homme from a 3 day stay in the Hospital and before this hospital stay, she was mobile. Today she cannot walk at all. I have to help her get into and out of the bed, toilet and shower at all times every second as she has a very bad gait the whole one second that she stands on her feet. I am curious as to know what to expect furthur down the road as her Drs say she may only have 4 months to live. I have experienced the Fluctuations and the hallucinations and the constant changing of medications. Ive been told by her Drs that you can only treat the symptoms in this aweful heartwrenching disease.
Hospice has been called in as she left the Hospital last Friday. They are truly wonderful people. I would just like to know what the stages are if any or does the disease vary from person to person. Since she has been on Seroquel and Haldol she seems fairly Lucid compared to what she was before. And before, when I didnt know what name she would call me for the day, moment or hour..and not to mention that I have had several Dr Jeckle and Mrs Hyde moments ,like when she told the mailman to call the police because I was trying to hurt her, and even if the police came she would tell them to get the F---k out of her house because we were all in on this together, as this did actually happen one day when I called 911 because she refused to take her medications because she thought we were all trying to overdose her. Sorry this is so long but I needed to vent too I guess. But she is now sleeping alot and these new meds make her more aware of things going on around her but she still has her "CYBIL" moments. Thanks for welcomming to this site. I love NOT BEING ALONE!

Thu Mar 18, 2010 1:24 am

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)

I'm curious what took your aunt to the hospital?

Haldol is a big no-no for people with parkinsonism. I'd try to eliminate that one from the regimen.

If you do a search of "stages," you will find a post about them here. The stages posted here were written by caregivers. Your mileage may vary. And, indeed, as you suggest, everyone is different.

I'm glad to hear you have the help of hospice. I think they can guide you better than anyone else at this point.

Has the healthcare power-of-attorney (next of kin) considered brain donation for your aunt Teresa? If so, those arrangements should be made now so that they aren't being made under even more stressful conditions. You can find lots of posts here about brain donation.


Thu Mar 18, 2010 1:39 am

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Welcome Sebley, and sorry you have to be here. I think a lot more people respond to new members when they put their stories under the Introductions part so you might think about trying that. Many of your questions are being discussed under the other topics, and several people get on the chat and talk about LBD and other things, so that might be a place to go to. (particularly for venting, having a shoulder to cry on, etc.) I'm sure you're doing a great job with your aunt. It is hard, it is tough, and it doesn't get better, but having access to this site will be a help for you, I am sure! Lynn

Thu Mar 18, 2010 6:47 pm

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Welcome to the LBDA forums, sorry for your need to be here but glad you found us, tons of information and people who listen.
Glad you are pleased with hospice, they are a wonderful, they are there for all involved not just the patient!
I hope you visit often and it would be helpful to post in areas that best fir your question or comment.
Good Luck !

Irene Selak

Thu Mar 18, 2010 11:24 pm
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