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I cannot stop wondering if my mom is in there screaming to be let out. My biggest fear for her.

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I worked with dementia patients for 12 years and my mom had vascular dementia. Yes dementia patients, in the beginning, know that something is happening. They realize that they are not remembering And that something definitely has changed. I remember having conversations with my mother early on and gently discussing with her how her memory was not as reliable as it used to be. I lived many states away in my sister had POA, But I remember telling my mom that there would come a time that she would need extra help. I told her that if she was ever driving and couldn't remember where she was going, to pull over to a safe spot and call my sister. I am so grateful that she remembered to do that because she was driving much longer than I was comfortable with. I had one patient that I was especially close to and I was with her from early dementia until very late stage... She was really upset about what was happening to her and her family thought because she liked me so much that I basically could "fix" her. So I would tell her that her brain is processing things differently and that there would be a time that she wouldn't know my name but I told her to just always remember my face. She did. Dementia is like when you're waking up from an early morning dream and you really try to remember what it was that you just dreamed, But it has slipped away from you. And with each passing stage we just have to meet our loved ones with dementia where they are.
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Reply to Hrmgrandcna
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I do believe that many folks when they first start showing symptoms of dementia are very aware that something is very wrong, and that's why you will often see outbursts of anger and why depression is so common in those folks.
However once they get deeper into the disease, they tend to live in their own little world and often appear to be quite content living there.
Your mom is still in there somewhere and when you least expect it she'll let you know just that.
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Reply to funkygrandma59
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I’d guess there are variances in this. My aunt while dealing with Alzheimer’s was her most happy and content. I often thought if she could see herself she’d be embarrassed by her behavior, but she was consistently content. When she knew no one and seemed to remember nothing said to her, she’d sing out hymns and songs from the past with a big smile and pure bliss. She worried no more, she had no problems on her mind, nothing concerned her in politics, relationships, or anything. I’m just saying, it’s obviously a nightmare to watch, but perhaps sometimes it’s not a nightmare to experience
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Reply to Daughterof1930
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lealonnie1 May 23, 2026
What a lovely situation for your aunt!
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I agree they make have glimpses, but from what I have seen they are slowly fading and not focusing on their surroundings the closer they get to death.
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Reply to JustAnon
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I strongly doubt it. If that were the case, she'd be screaming in real life and she'd need to be medicated. I believe those suffering with dementia get small glimpses into what's going on regarding their memory loss, and that's it. My mother would occasionally say, "I think I'm going nuts" but then she'd move on and forget about it. She had vascular dementia for 6 years.

Living in the Labyrinth by Diana Friel-McGowin is an autobiography by a woman with Alzheimer's disease. It's available on Amazon and it's a very good read in case you're interested.
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