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Hello, this is my story.

Hi, I'm Kae.  I'm the oldest daughter of my mom who is struggling with what we were originally told was a form of Parkinson's Dementia.  I was pretty annoyed that the doctors were not straight with me about what lies ahead for my mom (and me), knowing that I was a sole care giver to my mom.  My mom is a tough cookie and has always been demanding and opinionated.  Dealing with her 24/7 is a challenge sometimes.  My brothers can't/won't deal with her most of the time, except for little visits.  They have NO clue what is really going on with her because they don't spend enough time with her to have the repeated day in and day out conversations, the constant reminders she requires about where she is and what day it is, and who's who and what's what and how we do things.  I believe that we should care for one another, especially our elderly parents, but I resent the way my living family members have just assumed that's I'd make what has become such a sacrifice in every way to care for my mom without so much as a conversation about it or even a thank you.  I worry alot, and know this isn't forever, but as time progresses, I worry.  I pray alot and try to live day by day without getting too far ahead of myself.  I have had to put alot of my life on hold while dealing with my mom's care.  I was pretty unprepared for hallucinations or delusions, the things my mom sees that aren't there, the conversations she has with people who I can't see, her inability to pay her bills, deal with phone calls, people in her life, following through on anything we discussed, all that knocked me for a loop at first.  One day I read about someone on Facebook (of all places) who was experiencing the same things my mom was experiencing and it opened a floodgate of information for me.  I learned about Lewy Body and related Parkinson's Dementia issues.  It helped me immensely!  I have been reading and reading and feel alot better prepared.  I have no solice in the medical profession, they don't give me alot of support, information or background to prepare myself...had to do that on my own and thru the support I've found.    I did join a LBD Support Group and tho difficult to get to the meetings, it has helped me keep my head on straight with the revolving door of issues i'm faced with in supporting my mom.   I know I can get through most anything if I don't over think it.  And I am reminded this won't last forever.  And I have recently hired aides for some help with my mom now that her ambulation makes it difficult to dress and bathe herself, meal preparation, feedings, reminders for meds and eating.  The aides have helped ALOT but it took a little trial and error to get to that place of feeling comforable.  The forums here have helped me some and it's helpful to read about what others are going through and pointers from them.  Say hello.