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)

Tuesday, October 7, 2008

Note from Jean

Hi Everyone:

Rainy, gloomy day here....
Today I called the home to ask
if I could bring Cathy a Chocolate
Shake or malt from Culvers, and
they said by all means, she would
probably enjoy that, and enjoy she
did!!!!!! She said umm with every
bite, I could hardly feed it fast
enough for her... When it started
getting too thin, I went in the kitchen and the staff has a thickener that they add to it... We
finished every last bit... Anyway,
while I'm spoon feeding her, my
thoughts go back to when she use
to spoon feed my Scott. Never did
I think this would turn around........
Supposedly we aren't given more
than what we can cope with, but
I'm tempted to question the lord on
this,,,Why, oh why Cathy.....It's so
sad and hard to see her go down
hill like this...... yet always a smile
on her face when anyone comes
to visit... I will not doubt that she
knows all of us... Maybe because
we show how much we love and
care for her....I'll be there for her
as long as it takes....Love Jean

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