Our Families Journey Caring for a Mom with FTLD-MND

It is important to know as you read this journal that this was Cathy's life post diagnosis...

To know Cathy Truly you must know that she was: a Wife, Mother of 3 boys, Grandmother of 9, Sister, Niece, Aunt, Daughter, and Friend.

Our families journey began with Cathy's diagnosis the week of Thanksgiving 2006, Cathy was 52. Her original diagnosis was Pick's Disease/FTD. Looking back her symptoms most likely began 3-5 years before diagnosis. Most of the Doctors have told us that from onset of symptoms to death... the average timeframe is 4-7 years. (sigh) In the end her brain autopsy showed Frontotemporal Lobar Degeneration with Motor Neuron Disease FTLD-MND. (Basically... Frontal Lobe Dementia with Lou Gehrig's Disease)

Thursday, March 20, 2008

Snowball Fight! FRESH AIR!!!!

Jean called me on Wednesday. She had gotten permission from Gabe (social worker) to take Cathy outside. It was her first breath of fresh air since she moved in (that we know of)!! Jean, Cathy, & Gabe went outside and they even had a snowball fight! She said Cathy pointed towards her home but didn't try to take off... and she was ready to go in when they did. I am so glad she was able to get out a bit. Still a bit nervous about it, you just don't know how she will react from day to day, but I am hoping to get her out. She Loves Harry Potter movies & I promised her I would take her to the next one when it comes out... we will see...

And Thanks again to Jean for fixing "Build A Bear" again! Toby had to send yet another voice box! She had worn it out again!!!

Tuesday had been a bad day for Cathy. Gayle called after talking with the home. She was slamming her door & showing aggressive behaviors again more often than not. She also cut her alarm bracelet off again. So... they called her Specialist & got permission to up her meds just a bit. (I am glad they did this... I was thinking they should have done it a month ago... but it is their call. They don't want to drug her up... but I think just a bit of an increase is good & I had talked to her Specialist about it when we moved her in)

Hopefully the med increase will help things. Hopefully she will have more good days than bad. It is hard for me to write all the facts in the blog since I am not there... and the staff is Wonderful at the home but I am sure they prefer to tell us the good stories & not the bad! I am still VERY Thankful for the staff & their care. And Very Thankful for all her visitors!!

Cathy may not be able to show her appreciation... but I know she is Thankful & feels Loved. After all, that is all she wants. To Be Loved.

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