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, March 10, 2008

Grandma...

Our son Chase was feeling sad this past weekend because he was sick & not able to go see Grandma Cathy in Wisconsin. On Saturday Grandpa called us while he was visiting Grandma at the nursing home & passed the phone to Cathy. It may not have been the best conversation in the world, since Cathy repeats everything, but to Chase it meant SO MUCH! I watched him as he talked to her & he had this huge smile on his face, his eyes were lit up, & I had tears in my eyes (in fact I am crying as I type this note... such a special moment for him!) After the call I asked him what Grandma said & this is what he said:

Chase: Are you watching a movie?
Grandma: Movie, on fire.
Chase: I'm sick today.
Grandma: Sick, on fire.
Chase: I will come see you when I get better.
Grandma: Actually, on fire.
Chase: I Love You Grandma.
Grandma: Love You, on fire.

_______________

Next week is spring break for us. I am SO HOPING we can make it up to spend some time with her. We are all missing her so much.
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