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)

Tuesday, November 13, 2007

Tuesdays with Cathy...

Today was another interesting day...

Let me start off by saying that the weather is fine today in Iowa... but for some reason Cathy kept turning on our weather radio...?...? She would walk back to our bedroom and hit the on button & it would broadcast the emergency weather... of which there was none... over and over the computerized voice said that there were clouds in the sky and a high of 60 something, no wind, no snow, no tornadoes, no floods... I am not sure what she was worried about and every time I would ask her she would just start laughing. Hmmmm In the past Cathy used to watch the weather channel alot & was usually up to date on the weather. When Brad & I lived next door in the trailer, before we built our house, I clipped a cartoon out of the paper that showed two guys talking on the front porch & pointing out a trailer in the yard, the one guy said, "That is how we keep the tornadoes away from the house." She had it hanging on her fridge. (Oh yeah... I can't remember if I mentioned this but our mobile home finally went mobile last week! We sold it to a guy in Nevada & they moved it out of here! HIP HIP HOORAY! We have a great view now!)

This morning I mentioned to Brad that the trashman is coming tomorrow... then this afternoon I heard the bells on the front door ring (I have Christmas bells hanging on it so I can hear Cathy go in and out... she is fast) & before I knew it she was in our van & driving it... MY HEART STOPPED... all I could think of was that she was heading to Wisconsin, going home, & she hasn't driven in months... how was I going to stop her?!!! By the time I got outside she was parking the van behind Brad's truck... she was moving it so the trashman could get to the trash.... PHEW! Crisis diverted for the moment!! Now I have to decide where to keep (hide) all our vehicle keys... since my van keys were in my purse & she dug them out! (If I am not careful I will hide them from myself also...)

Who remembers whoopee cushions?? This is one of my "kids embarrassing me in a public place memories" - Mia picked one out for Chase for his Birthday... she insisted on carrying it through the store while playing with it, every time we passed someone they would look at me... Mia was smiling & laughing & making farting noises and everyone was looking at me... I wish I could have been holding a sign that said, "I didn't fart - my daughter is holding a whoopee cushion!" So anyways... Cathy has also enjoyed the whoopee cushion, today she would randomly squeeze it at our dog... Lizzie would bark at her & run in circles... Cathy would laugh & laugh.

This evening Brad started burning leaves & the kids were helping him rake and pick up the leaves. Cathy helped out & really enjoyed herself... she spent 2 hours out there with them... to the point that the kids were getting mad because she kept taking their leaves from them & they were having fun playing in the piles. The picture below is of Brad pointing out dog poop that he almost picked up with the leaves & Cathy laughing her head off! I know... I just typed dog poop...



Today's habits: whoopee cushion, weather radio, watching "The Christmas Card" & "Pride & Prejudice", and brewing coffee (Brad brewed some of my french vanilla coffee this morning & Cathy finished off the pot and brewed another 3 pots today!!) And we also ran out of Kleenex again... I just bought 8 boxes last week... I might need stock in that also!

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