Moms CJD diagnosis
I’ve been quietly navigating something I don’t think I was ever prepared for, and I’m hoping to connect with people who understand this world.
My mom was independent not that long ago. She was working, living her life, and slowly started having symptoms that didn’t make sense, mostly dizziness at first. We had no idea what was coming.
Now, everything has changed.
She’s in a care facility, and the hardest part is that she doesn’t understand why. She asks to go home, and I don’t have an answer that brings her peace. Her independence is completely gone, she is non ambulatory and completely dependent on others to care for her basic daily needs. Watching that disappear so quickly has been devastating.
There’s confusion, fear, and moments that feel like I’m losing her in real time.
My sister and I have tag teamed and have been managing this mostly on our own and trying to stay strong, but the reality is overwhelming. Memory care is about $10,000 a month, and I’ve been doing everything I can to keep up while navigating all of this emotionally and financially. We keep hitting walls and so much red tape for any type of help, Unfortunately my mom was not financially stable in life.
I’m not really here to ask for anything. I think I just needed to say this somewhere people might understand.
If you’ve gone through dementia, Alzheimer’s, or CJD with a loved one… how did you cope with the emotional side of it? Especially when they don’t understand why they can’t go home?
Any advice, shared experiences, or even just knowing I’m not alone would mean a lot right now.