I talked to a local rep for the Alzheimer's Assoc. and the advise not to tell my mom about the Alzheimer's. They say it's a death sentence and too upsetting and painful to find out. But when I take my mom to the Dr. and the Neurology Center, they discuss it openly to me in front of her, and try to get her to understand. She's not excepting what she hears anyways, but do you ever discuss it with them? She has asked me a few times what's wrong and to please explain it to her and I tell her she has Short Term Memory Loss.
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We do not talk about our mother's dementia in front of her. We might mention her "little problem with memory" to her. She is not seeing many doctors and her primary care doc, a geriatrician, does not talk about dementia when she sees her. Mother's main coping mechanism has always been denial. Taking that away and not giving her something in its place would be cruel, in our opinion.
My husband was an engineer and his world consisted of cause and effect. If something wasn't working, his job was to find out why. It would be unthinkable to me not to tell him the cause of his cognitive and behavioral problems. His doctors all talked opening with us about Lewy Body Dementia -- even his geriatrician (the same one my mother sees). It fit his personality and outlook to know, and like Glad's mom he took some comfort in knowing there was a cause (he hadn't suddenly become a bad person or a stupid person) and that many people were looking out for his welfare.
You've gotten advice from someone at the local AD association. You're hearing experiences from other posters. But you are the one who has to decide (possibly in consultation with other family members who know and love her) what will be best for your mom. Do your best. That is all that can be expected of you. None of us are mind readers or fortune tellers.
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She is basically doing pretty well, 18 months later and so far her memory hasn't gotten noticably worse than when she was initially diagnosed. Days are up and down with some days better than others.
When she is out of it; and she knows something is wrong and pathetically says "whats wrong wiht me?" -- i can see how frightened and disraought she is and I just say, "its okay, mom; you are just confused, this is normal and everyone forgets" and we go on to something else and eventually it passes. After 18 months of this, I realize that telling her isn't going to make her better, it isn't going to change the progression or outcome and discussing it will only make her more anxious and self concious.
I do have other conversations with her about what she wants if she can no longer manage at home (she will be 91 this month) so that I can prepare and reinforce with her that one day she may have to accept help or move from her home.
Everyone is different. Our parents may have had an elder living with them with dementia at some point in their life -- so going thru that with their grandparents or parents or their "experience" with NH hasn't been good and it is understandable why they are in denial or fight it so hard. They see friends like this and it is very scary -- understandably they "dont want to go there or be that person". Our generation is more educated and see it, are dealing with it and we hope not to get dementia or ALZ either. The best we can do is plan, don't be afraid and make sure that we are active in developing policies and influencing "care facilities" and their programs so that it can keep us all as active as possible and meet our needs and desires for quality of life as we age.