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, November 10, 2008

"Well, mark this day down on the calendar. It's the first day she didn't know who I was." - Brad

The kids & I stopped by before Halloween to visit Grandma on our way to Iowa for the weekend. When we walked in she came right over to both kids and gave them a quick hug. She glanced at me and then walked into her room. We didn't stay long & she was restless. As we were leaving both kids gave her a hug. They both leaned in towards her & reached back to put her arms around them... Just as Chase did it he then tried to rest his head on her shoulder, and she almost immediately she pushed away. I saw the look on his face... sadness. It just broke my heart! I know he understands that Grandma is sick, but he still longs for those small moments of Love from her. And they are now few if any. Should I continue taking them?? They want to go, but it is just so hard...??..??..??..??

Brad called me last week while he was visiting her, I could tell by the tone in his voice that it wasn't good. He was just sitting in her room, without her. He said, "Well, mark this day down on the calendar. It's the first day she didn't know who I was." He was also heartbroken. Usually she is all smiles when he walks in. But not that day. She just looked up at him & then back at the TV. (in the main TV area) He sat down next to her & she paid no attention to him. So he got up & headed to her room hoping she would follow, as she usually does, but she didn't. After I talked to him he went back out & she took his hand. But it just wasn't the same. Every day is different, but the small moments we hope for are getting few & far between.


Note from Jean 11/4/08:
________________________
Hi Beth
Good to see you and the kidlets
the other night,,,, Halloween was so much fun at the care center,,,,
Barb S. and I dressed up in masks
and costumes to help Cathy and the other residents pass out candy to about 200 kids...........
It had to of been 100degrees in
the main dining room, of course I
couldn't take off my mask as I
didn't want anyone to see how
awful I looked... Cathy just sort of
watched and wasn't quite sure
what was going on, but she sat
with us over an hour, Gayle also
was there, no he didn't dress for
the occasion, but it was fun,,,,,,,
Not sure who had more fun?
Cathy, Me or Barb S. I still try
and visit Cathy at least once a day. Yesterday we played bingo,
yes she won again.... she has
enough necklaces to start a jewel
ry store...... She doesn't even try
to take candy off the cart with
prizes on anymore.... Very vocal
at times during bingo, not sure if
she is sick of playing or just wants
to get going....I'm on my way over
there shortly, I worked the election
polls this morning....Will write more
later,,,,,,,,,,,,,,,,,,,,,,Jean

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