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)

Monday, February 2, 2009

Note from Barb S

Hi everyone, Just an update on Cathy's day. I stopped on my lunch break today and big change since yesterday. Very weak, needs wheelchair to go outside the unit and it was the first time that she just gave me a blank stare like she didn't know me. I had to go back to work, but went over after work and Jackie was there getting ready to take her for a ride in the wheelchair out in the main part of the home. After Jackie left I just sat and talked with Cathy and she just held my hand tight and had that stare. They had to suction her again just before I got there because of all the secretions. Hospice is keeping close watch on her. The Dr. has now started an antibiotic and a different med for the secretions, hopefully it'll help. I'm off tomorrow, so I'll spend alot of time with her and will keep you posted. Love to you all! Barb

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