Loved Rollercoasters as a Child but Now so Sick of Living on One

by Roo
(Plainfield Il USA)

My heartbreaks to see what my poor life has become.

Wish she had a disease that people want to rally behind unfortunately she has a disease that strikes fear into some and other scratch their head and says what's that - Lewy Body Dementia.

Never know from day to day or even during the day what you will be greeted with at any given time, to compound matters there are no drugs that are specifically for disease.

Lewy Body is what Robin Williams had he hung himself, people breeze over that he had Lewy Body
Parkinson or Depression is much more acceptable.

I have had my Mom refused admission to Rehab Facilities once they found out her DX, on intake visit the places that would accept her are Major dumps.

My Mom is such a sweetheart unfortunately this has a component of hallucinations, so she actually would be a very interesting case study, long term memory is there and has short term memory there are periods that are almost seizure like we're she blanks out and stares off and variable levels of consciousness.

I pressed a SW when they were having problems placing her and mentions why is it not that difficult to place Alzheimer patients, she said it requires more care because they change rapidly, so basically something bad happen and someone got sited, then policies are put into place.

So basically if you want her in the least restrictive environment where she would do best, they don't want to do it. Word to wise once something is placed in a patient chart it follows them whether it accurately reflects them or not.

So she stays with our family where we give her as much freedom as possible and she has lived longer and done better than they ever expected, but we are exhausted with working and being in the sandwich generation the middle is being squished.

Thank God for a wonderful spouse that understands
that options that would be acceptable are not there.

I thought when family members had AZ that was bad
but that a downward disease, this is all over the place.

Resent that as tax paying Americans no help for elderly but we allow others to come in to our country and benefits are given, what a slap in the face to our seniors...that is what I am frustrated about!

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by: Anonymous

You have a point, I never thought about! We are all in the same boat, but unfortunately the boat we are in is turned away. My best to you and your family.

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