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, April 21, 2008

Grandma & Mia ... Hot Rods!

I will have to have Rhonda type something up on this one... but basically Grandma Cathy & Mia almost escaped on Saturday!

On Saturday Rhonda & Barb H took Mia (our daughter) shopping with them and then over to see Grandma Cathy. At some point while they were visiting Mia said something like this, "Grandma, are you coming Home?" (Tear jerker!!!!) Grandma grabbed her hand and took off walking!!! Rhonda called her name & she didn't come back. So Rhonda cleared it with the nurse and told them they were 'going for a walk outside'. Cathy took off walking down the road past the car & Rhonda got her stopped by saying, "Cathy, stop, my car is parked right there!" Luckily her car was locked and that distracted her enough to get her just walking around outside. And then eventually inside to watch a movie. Phew! Crisis diverted.

Mia told me about it later & I asked her, "Mia, were you nervous leaving with Grandma?" Mia said, "No Mom, she's my Grandma!" She still has a hard time grasping the whole illness... even this morning she started crying when Grandma took her crayons away when we were visiting, I tried to explain that Grandma was just trying to pick up & it was because she was sick that she didn't understand Mia was still using them... but try & explain that to a 4 year old!!!??!! I'm sorry... as Mia would say, "I'm not 4, I'm 4 1/2!!!!)

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