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 My mother "may" have Lewy Body Dementia 
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Joined: Tue Oct 30, 2012 9:59 pm
Posts: 1
Post My mother "may" have Lewy Body Dementia
Hello Folks,
My mother went to see her doctor last week and my brother and sister spoke to the doctor about symptoms our mother has been showing lately.
The doctor says she may have Lewy Body Dementia. I found your site while searching the web and have a few questions. Right now, our mother is living in her own home. My sister and brothers live nearby and have been stopping over and sometimes sleeping over her house. The hardest part of trying to care for Mum is that she does not think anything is wrong with her. We try to help her and she gets very defensive,saying she raised all of us and did fine and she can take care of herself. She has been having some delusions and sees things that are not there. Mum gets very adamante about stuff and we do not want to upset her, but also worry about her safety. Mum is going to be staying with me in Florida this winter at my house. We are going to try to get a home helper for her when she goes back home. She is very upset at the thought of anyone helping her because in her words "I can take care of myself". Thank you in advance for any advice you can give me in dealing with her and also I am keeping good thoughts for all of you who are living and caring for a loved one with Lewy Body Dementia.
Terry Castiglia

Wed Oct 31, 2012 6:38 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: My mother "may" have Lewy Body Dementia
Hi Terry - I doubt that any of our LOs thought that they needed help! Don't most of us want to be independent, afterall? But, with this disease and many others, people either don't really know how bad things are (their health, their safety, etc.) or they are in denial and don't want to admit that they are in great need of help. I had to sneak my dad to an ALF for an interview and to get info. He was a great one for not "needing" help when he needed a lot of help.
Depending on her level of mobility, her overall state of health, safety concerns about her going outside by herself, in the kitchen, etc., you may find that you need help while she is at your house too, not just after she leaves. I think you'll know right away while she's there if it is too much for you to handle without assistance. And, with this disease people's health can deteriorate very quickly. If I were you, I'd look into getting some help while she's at your house. If you find you don't need it, great. But I'd want to have something lined up just in case so you aren't in a crisis and having to find help in a hurry. Do lots of reading about this disease. It really varies from one person to the next A LOT! Good luck, Lynn

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.

Thu Nov 01, 2012 7:46 pm

Joined: Sun Jun 24, 2007 5:35 pm
Posts: 349
Post Re: My mother "may" have Lewy Body Dementia
Welcome, Terry.
You will find much help and support here. I wish you well with your mom. Keep us posted on how she is doing!
Take care,

Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url][/url]

Fri Nov 02, 2012 9:31 pm

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: My mother "may" have Lewy Body Dementia
Welcome to the LBDA forums, sorry for the need but I think you will find many informative people here that are only too willing to help with questions.

I am willing to bet the 99% of people with LBD didn't think anything was wrong with them either , with my husband being one of them !

Irene Selak

Sun Nov 25, 2012 4:51 pm
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