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, December 11, 2008

Note from Jean

Note on Monday, 12/8/08

Hi Beth and family:
Haven't written much lately about
Cathy as it seems to be one day
good one day not so good,,,, Today being Bingo day, we went
down to the main dining room where Bingo takes place, but she
wasn't too interested in it today, like I said, I love Bingo and tried my hardest to get Cathy to stay
put, but she insisted on going around to all the tables and trying
to erase everyone's cards, not a
good thing to do....then she took
off in the kitchen area and we had
a very hard time controlling her,
so I said Cathy, if your going to be
naughty we'll just go back to your
room, she looked at me and smiled!!!! so we went back to her
room, and she pulled her curtains
shut, took off her shoes and then
crawled into bed, before she covered her head with the sheet,
she waved good-bye to me,, Guess it was time to go....You
don't know from one minute to the
next what she's going to do... most
of the time, I just go with the flow..
I love her dearly and Cathy can do
what she wants to and when she
wants to!!!! I'll visit again tomorrow and it will be a new day!!!!!!!! Love to all JEAN

____________________

Brad didn't make it over on Tuesday (his only day off this week) because we had a snowstorm. Instead he stayed home & played in our 8-10 inches of snow! :) The kids had a "snow day" from school... so they were glad to have Daddy home! He has some vacation days next week, so hoping to go spend some time with Mom & take her a Santa Hat! :)

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