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I just have to vent, hoping maybe someone might read this and relate.
I've always been a Mama's girl, very close our whole lives. I remember when I was younger her biggest fear was getting Alzheimer's/dementia. She would joke and say "if I end up forgetting who you are and drool in the corner,.can you please just take care of me?" Well, 2019 she had a massive brain bleed causing vascular dementia & left side weakness. For 5.5 years my Dad and I managed to keep her in their home and take care of her. It definitely wasn't always easy. Physically it was fine. Mental, no. I watched my Mom, a.teacher & master gardener deteriorate to a shell of what she was. By the end, she didn't know who I was or my Dad. She couldn't talk and was bedridden. My poor father witnessed the seizure that made her hospice. When that happened, the doctor said she couldn't breathe on her own,.therefore hospice stepped in.
My Mom held on for 8 days. It was soooo hard. For 8 days, my Mom totally out of it, dying. I never left except to shower and eat. I slept there and held her hand till the end.
Everyone says your hearing is the last sense to go and that she could hear us. My question is-- asking anyone that has had a loved one with dementia pass in a similar fashion-- If my Mom had dementia and didn't know is in the end or even understand anything we would say to her, I wonder if she could understand in her state in the very very end. The 2nd or 3rd day I asked her if she could hear me to squeeze my hand and she DID! Two times! Later, my Dad asked her the same and she squeezed his hand! One of the nurses said "not to upset you but a lot of times, hand squeezing is a reflex." Man... I'm a nurse tech and if I was with a hospice patient and family, I'd never say that and just let them be happy in their last moments of their loved ones life. Anyways -- I did a lot of talking and crying. I felt like my Mom was holding on because that was all I did was cry. When we were alone, I decided to not let my Mom hear me cry. I played the song "sailing" by Rod Stewart then "Go rest high on that Mountain" by Vince Gill, held her hand and put my head down. After that, my sister and Dad walked in. My sister asked me to give her a ride. Before I left the room, I held my Mom and said in her ear, a simple "I love you, Mom." That's it. Nothing drawn out. Walked out of the room with my sister and before we could even get out of the hospital, my Dad called me to tell us to come back, and that our Mom just passed. I felt like she was waiting for her girls to leave to pass.
So, my question is: Do You think somebody with dementia in their final stages of life understand our words? I often wonder if my mom knew that entire week that that was me with her by her side.
This whole thing has been life changing. Not so much my mom's death, But the five and a half years I took care of her up to. It's like you go and go and go and do everything possible to keep your loved one comfortable just to know the final results eventually (death). Then bam. The busy crazy, caregiving life you been living in done and the person you loved the most is gone too.
Thoughts?

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So, I believe that dementia imprisons our souls in our body. When we are leaving this world, yeah, we know what and who are around us, even when our broken brain and bodies don't allow us to respond appropriately. However, your mom responded to a direct request, that wasn't reflex, unless every time you held her hand she squeezed yours.

Some people just love to ruin moments for others. Ignore what she said, your mom knew you were there.

May The Lord give you grieving mercies, comfort and guidance during this new season of life.
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My grandmother had advanced Alzheimer’s . Mostly spoke gibberish . Did not know where she was or who anyone was. She fell and hit her head on furniture , causing a subdural hematoma . At the hospital , grandma was totally lucid , she knew who my aunt was ( whom she lived with ) , she could understand and speak for about an hour before she slipped into a coma and died .
My aunt said it was surreal , because grandma was her normal self again .

I believe it’s quite possible that your mother was aware you were there .
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Thanks for sharing your story. IMO, I think the mind is capable of incredible things. I have heard stories like this , and I wouldn't doubt at all that mom was listening and understood what was going on, and couldnt leave this world until you and your sister left. Im not really crazy about the hospice nurse telling you hand squeezing is just a reflex. I feel that , would of been better unsaid .

I am so sorry for your loss. Please try and take care of yourself though this horrible time of your life. My deepest condolences 🙏 😔.
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