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, June 2, 2008

Note from Jean

Hi Everyone:
Just got back from playing Bingo
with Cathy...It's getting harder to
have Cathy sit there even for 20
minutes... she just wants to hurry up and get her coffee and cookie
and then onto something else...
I don't mind as long as I can spend
time with her...the minute we get
back to her room, she brings me
the book to write in, I think she wants me to tell everyone that she
won at Bingo....Maybe we cheat
a little bit, but no one really cares,
it's not like she wins money,just
a candy bar (Chocolate) her very
favorite... She'll point to my cell
phone and then we call either Beth
or Charlene, her eyes light up so
bright when she hears either of
their voices...She listens for a short while then hands the phone
back to me... On Wednesdays we
usually go to church in the day room,
she cries every single time we go,
I try and take her out, but she wants to stay , not sure what that
is all about. If only we were better
at reading minds.. but Cathy is well
taken care of and liked by all the
staff... sure makes it easier for
her family and friends coming and
going.. I also noticed she hasn't
been packing up as much, as she
use to, at least when I've been there.... Her TV got bolted down to
dresser last week, so not able to
pack that up all the time, just the
other day she showed me where
it was attached to the dresser, and I said, that's so you don't
drop it when your packing, she
gave me a funny mean look, but
I truly think she understood what
I was telling her....Other than that
all seems to be going ok,,Day, by
Day is all we can hope for....
Jean

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