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 New to the Association 
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Joined: Fri Aug 17, 2012 9:11 pm
Posts: 1
Post New to the Association
Good morning. My 90-year-old mother has been failing for at least 3 years now, probably more as we remember early symptoms; however, she wasn't diagnosed with Lewy Body Dementia until June of this year. Instead, she was treated for depression and anxiety, even while her cognitive skills were diminishing. It wasn't until we moved her near us, 400 + miles from her home, and found a geriatric doctor that we moved toward a diagnosis. My family and I have been trying to educate ourselves about Lewy Body, but there is so much to learn. We had to move my mother from the Assisted Living section of her retirement center to the Special Care unit only months after she arrived. She still doesn't understand why.

I do have a first question for the forum. We haven't told my mother about the Lewy Body diagnosis. She knows she has trouble with confusion, but no name for her condition. The reason is because we've been trying to protect her. She's always hated illness, seeing it as a weakness, and she also hates bad news. When we first brought her here she was quite confused, couldn't focus, and was hallucinating. There was no need to tell her then. But, now, gratefully, the Aricept she started taking in late June is helping some, making her more lucid and increasing her ability to focus on, for instance, the TV. However, it also has her questioning why she isn't getting better. Yesterday, she wondered if she had Chronic Fatigue Syndrome. I'm not sure where she pulled that from. My question is -- do any of you have any advice for telling a 90-year-old woman, who's afraid of illness, that she has Lewy Body Dementia and what this means? Do any of you think we shouldn't tell her? I value your advice. I do appreciate this website and forum. Thank you, Donna

Thu Sep 06, 2012 2:05 pm

Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: New to the Association
Hi Donna,

Welcome to the forum. I hope it helps you as much as it has helped me!

As far as explaining to your mother, everyone is different, but I can tell you how I handled this with my mother, who is 88 y.o., diagnosed almost three years ago. I explained to her that she has a neurological disease that is causing the symptoms, that it is progressive, and that it cannot be cured. She asked me a couple of questions, which I answered in general terms. That seemed to satisfy her. I never used the term "dementia with Lewy bodies." I figured it was best for her to have the basics and let her ask if she had more questions.

Even though she does get alarmed about illnesses, it seemed to relieve her to know that she had an illness that explained her symptoms. I have a feeling that she had been aware of her decline and afraid of what was happening to her for some time, but didn't mention it to us out of fear that it would result in her not being able to live at home alone anymore (sadly, it did). I feel that anyone with LBD needs some explanation of what is happening to them, tailored to the individual situation and personality.

Good luck with your mother's situation, and come back often. Lots of others on the forum have been there, done that.


Thu Sep 06, 2012 2:49 pm

Joined: Fri Mar 30, 2012 7:29 pm
Posts: 10
Post Re: New to the Association

First, I want to welcome you to the forum and let you know that you have come to the right place for support and information. My uncle, at age 67, was in late stage LBD before we could find a diagnosis for his condition. We found a wonderful gerontologist, neurologist and pychologist who through their combined testing confirmed that he did have LBD. The medical team and our family discussed with him at time of diagnosis what his diagnosis meant, and that it was a progressive condition. He asked questions at the time, seemed to understand the implications and he was emotional (sad). I believe it was important in our scenario that we walk alongside of him in the journey. A wise caregiver, once told me, you must go forward alongside our loved ones, letting them see we are there, that we aren't leaving them, and respond to their feelings as they need us to. In other words, keep open dialogue about the progression of their illness, letting them talk, discuss, and ask questions (even if they are the same questions over and over) knowing that you are there to support and listen and explain as best you can. It's not easy, and many times you may feel that you are not getting through or being helpful-but I have to believe that we are. I wish you all the strength and support you need, and this online community is a wonderful place to seek guidance and learn of other's experiences.

Take care of yourself.


Kathleen B.
LBDA Forum - Welcome Moderator Volunteer

Thu Sep 06, 2012 10:12 pm
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