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)

Sunday, November 16, 2008

a few notes & thoughts...

Note from Jean on 11/16/08:

Hi Everyone!!!
Spent some time with Cathy this
afternoon, as did Gayle... The care center was having a Packer
Party, Bar-B-Que pork sandwiches and popcorn, dessert,
and root beer floats, plus ice-
cream!!! what a treat for all......
Cathy tried ice-cream, but found it
a bit hard to swallow, maybe too
cold ??? I think it's alot like jello
for her, it melts before she can
get it swallowed... anyway the game was won by the Packers, she had her packer t-shirt on and
green and gold beads from her
many wins at bingo......she was
happy and smiley today... tried to
escape a couple times from the
dining room , but we rescued her
each time.... Sure is a cold,cloudy
day here... Beth you need to come
over so I can play cards with you,
or better yet we can all play UNO!
see you soon?? Jean

___________________________
Note from Jean on 11/11/08:


Hi Beth
Just catching up on all my E-mails,
etc. I had a good bingo yesterday
with Cathy, I still want to believe
Cathy knows us, when her nurse
said its bingo day, Cathy smiled,
went in her room and started to
take off her top, as I always make
her change before we go down to
bingo.... I think she knows Brad
also, it just depends on the time of
day.....When we were ready to
leave from bingo, Gayle came in,
and Cathy immediately went back
to sit down for awhile with him....
yes, she is failing rapidly, but she
sure is trying her hardest to hold
on.....I'm so glad Brad is in town
now for a few weeks???? and goes everyday before work to see
her,,,the nurses have told me Cathy has more family and friends
visiting her than any other resident
there... They think its wonderful..
So whether we think she knows us
or not, we should and I will continue to visit, and some days
are very, very hard for us, but
think about how Cathy must feel...
Shes quite the gal....Love Jean

____________________

Brad heard about a job opening over by his parents... it is a temporary job covering while a guy is off with an injury. He put in for it & got it! So he has been staying over with his Dad & visiting his Mom almost everyday before work. The first day was rough for him... Cathy was having a few bad days and he felt like she didn't know him. But after that day (post below) he says things have improved some... she seems happy to see him when he comes now. It just depends on the day, time of day, etc... I am glad that he has this opportunity to spend some time with his Dad & also see his Mom more often.

The Annual Family Week/Deer Season starts this Friday! The kiddos & I are heading over after school Friday, Toby & family are coming, Rhonda & Larry, and maybe a few other family members. It is always a fun week... yet the traditions have changed now that Cathy is sick. But we are all excited to get together!

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