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)

Wednesday, November 19, 2008

Sleepy...

Note from Jean on 11/18/08:

Hi Beth and Family:
Well, it's finally winter here I think?
Cold, Cold and Cold... All we need
now is snow, one thing I can look
forward to, is having to put up with
that for about one month, and then
Florida here we come.....................
The last two mornings I've stopped
to see Cathy, which is about 9:30
or maybe 10.00A.M. she is in bed,
the nurses tell me she doesn't
want to get up and eat, but I guess
she's eating lunch, mostly the sweet things, I still take her down
to the dining room when I can, and
today she had yogurt and pudding.
had a difficult time with both,,,,
Went back to her room and sat
a while, then she walked out of her
room to the other TV...So I said,
see you tomorrow and she smiled
and looked away......I have to wonder what she's thinking as we
leave..... Excited to see all of you this week-end....JEAN

______________________

Brad sent me a picture this morning... it was of his Mom sleeping in bed... it was about 10am.

He said she briefly looked up at him when he walked in. She was still in her PJ's and had the shades pulled & lights off and was snuggled up in her bed. Her room door was open & she would look over every time the main unit doors would open (her room is the first door inside the unit). So he pulled up a chair and sat with her. Scratching her head like she did when he was a little & rubbing her shoulders. He stayed with her for about 45 minutes... just being there.

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