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My bro and I learned of his diagnosis of "probable early Lewy's Body Dementia" which was diagnosed incidentally and by symptoms after a car accident a year ago. We heard about it together, and we researched it together and learned together and we speak of it, of symptoms, whenever we speak. IF this is what he has then it is very early and he is for the most part very very rational in all ways. Given that he says "I would as soon not have known I have this, as the prognosis isn't great, but given I DO know, I want to stay informed as I can." He is 85 and living in ALF where he is quite the most able of any there, other than a bit of a wonky gait when he moves about. His symptoms have lessened since his admission there, and since I took over for managing bills and etc for him. Lessened anxiety means few symptoms for him; greater anxiety brings on symptoms. I would say, if your LO can understand, then honestly it is better to be informed. Good luck. And appreciate your note so much about the circle on the right. I knew, but I am no computer geek, and would have appreciated knowing more earlier.
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I was wondering if I should tell my mother that she has dementia and what it means but I just tell her that everyone goes thru memory problems and if she can’t find the words I help her. When I slip up and forget to do something we laugh about it together! I try to make her feel as normal as possible and reassure her that I forget things all the time. I have learned to make a game out of it to make her laugh and she enjoys when I make a mistake.
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I try to keep it simple for sis with LBD, at 69 years old. Limited verbal ability-says the words but most don't make sense. Sis has had memory problems for about the last 5 years. Only when she came to live in my area last year- did we get a diagnosis. I did say parts of the brain are worn out-no specifics of the disease. Sis did not ask for details-she would not remember anyway. She knows something is not quite right anymore-saying she "Can't be herself".

I try to keep it positive-make a big deal out of anything I can think of-cute outfit, her hair looks really nice today etc. Symptoms changing sliding down hill a lot in the past 9 months. She does not get enrichment from the former community-they don't even try-want everyone to go back to bed and stay quiet.

Sis used to say my name now she does not. Now in a new facility-it will be hard on sis-I can't go see her due to corona-I tried to call she did not answer the phone. I miss her so much and want to be with her-remind her that I am still here for her every single day.

I can not worry about the future-one day at a time.
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JaneSmith Mar 2020
I know this separation is hard on you both. My thoughts are with you.
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