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, January 29, 2009

update from Brad

I just talked to Brad and he said she is better than yesterday. She only ate about 25% of her breakfast and is struggling with eating... She didn't greet him with the usual smiles. He said she just looked at him, in a way she has not before. What is she trying to express to him? Pain, fear, tiredness, acceptance, sadness.... if only we knew exactly. She kept leaning into his shoulder. When they sat on the edge of the bed she leaned her head into his shoulder. When he walked with her to see the birds she leaned in towards his shoulder as well. And she headed for the door today, he tried to distract her, but she kept going for the door again. Cathy always loved the outdoors, I can only imagine she needs to get out & get some fresh air.

She had lots of visitors this morning... Jean, Barb S, Jackie, Barb H, Brad, & Gayle (he has been going a lot every day).

Again she is a bit better... but not as well. It is so hard watching all of this happen... with a helpless feeling & no hope for the future.
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