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)

Friday, March 7, 2008

alarm bracelet

I talked to Gayle & Jean this week... Gayle said she had a few good days where she seemed more relaxed. She also cut her alarm bracelet off again.... the nurse said they were going to search her room again looking for whatever she is using to do that. (she is still sneaky!) Our guess is that she is irritated by it more than anything, it is on her ankle & she seems to be frustrated when it gets in the way of her socks. Even when it is cut off she doesn't make an effort to leave (at least that we know of...), so I wonder if we could just get her an ID necklace or wrist bracelet instead, or maybe have her wear it on her wrist? Just thinking out loud...

The kids & I were planning on going up this weekend but Chase has a fever & sore throat... urgh. We are bummed to stay home but he needs to rest & Grandma doesn't need to get sick. I missed a call from Jean this morning... she was visiting with Cathy & called from her room.

I was also looking through pictures tonight & came across this picture... I think Toby took it at Christmas. It made me smile so I thought I would share it with you! :) She loves to watch the birds, squirrels, & deer outside.


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