Friday, June 28, 2013

Sharing Knowledge

Yesterday, Mom spent the afternoon providing an educational opportunity to the day hab staff and some of Lyn's team members.  Here are Mom's thoughts on the afternoon:

I wanted to explain what little I know and how it relates to Lyn. 

I drew an umbrella and wrote "Dementia" on top then listed the 5 types underneath.  As with most of us, at first, they thought dementia was "another form of Alzheimer's."  I was able to explain things we are facing such as hallucinations which we haven't dealt with yet, paranoia which we are beginning to see, frustration, excessive sleep.  I explained how short term memory is the first to show decline and used, as an example, the use of utensils during dinner.  She leaves the napkin by the plate, rarely uses a knife and eats almost everything with the spoon.  It was rather funny watching expressions because most people don't think about these things. 
One lady, a new employee, dropped her jaw when I introduced myself and told a bit about Lyn, her age, how I suspected "something" and began the rounds of medical offices.  She had never heard of early-onset Alzheimer's disease.  When we were done she hugged me and said Lyn was so lucky to have me as a mom.  My first instinct was to brush it off but instead I thanked her and said "I try" and will continue to do so.  She pointed out how so many parents "throw away the special needs child once they are out of school" and don't really bother with them.  

When I spoke about having registered her with the City in the Silver Alert program the staff really took notice. They will be calling to find out about registering several others who are special needs. It's not just for the elderly, after all.

This was a fun, upbeat and touching afternoon.  Even her case manager thanked me several times saying she learned much.  I have to admit I was on a high.  I would love to do this, educate others about this horrible disease.  I am learning, will be learning for years to come.  But as I learn I want to share, especially since no one knows about early on-set for the special needs other than Downs Syndrome. 

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