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, June 12, 2008

Note From Jean - Brad's weekly visit

Hi Beth and Family:
My daily update with all of you on
my visits with Cathy... I was gone
for 5 days to Texas to visit our
grandkids, so when I got back I went right over to visit with cathy. she was excited to see me but I really don't think she realized I
was even gone for a time..but
anyway she was smiley and happy.
Wednesday afternoon I went to
church with her and then to coffee. Nothing different in that
routine to mention,, she is having
a lot harder time eating, choking
on almost everything..Have to be
very careful what we give her.. It
just breaks my heart to see her
like that,,,Life is not fair at all......
Friday I will play Bingo again with
her, she looks forward to doing
some kind of activity I think....
It's hard to do much as her atten-
tion span is short...She looked so
cute today, Green Packer shoes,
white socks, shorts, bright yellow
T-shirt..But she was happy and
so proud of herself... she made me sign the book again....Not
much more to say for tonite....
Hugs and Kisses to all....
JEAN



_____________________



Brad went over on Wednesday to spend the morning with his Mom. He spent about 2 hours with her & took her out to Wal Mart. She picked out yet another kids movie & then was ready to go back to the NH. She sat with him less this time... he talked with the nurse & they both feel she is wandering more and more again.



I am hoping to head up on Sunday... weather permitting. Here in Iowa we are reaching the 500 year flood levels!!!! It is Crazy & my Dad, being a corn & beans farmer is quite grumpy about it. (SIL - Tracy's Dad is also a farmer here in Iowa) Sandbagging here in town etc... so far my parents home is in the clear. Our thoughts & prayers are going out to the family of the scouts who were killed/injured in the Tornado last night in Western Iowa. This weather has been tough & Brad said that part of the railroad tracks up near Osh Kosh and that area are also washed out. I wish we could send some of this rain to the coasts where they are hot & dry! ... Cathy would be watching the Weather Channel non stop right now if she were not sick.



I found this photo the other night of Cathy sitting at our son's school music concert a year ago. It made me cry... just thinking about the fact that she will not be in the audience again.





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