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, March 26, 2008

Thoughts of Cathy

I can't sleep tonight... so here I am at the computer. Brad took a new job yesterday with the railroad in Wisconsin. This will put us much closer to Cathy & we are excited about that. (although I am VERY SAD to be leaving my family behind. We are not moving only to be close to Cathy, it is just a bonus for us. Brad had actually applied for this job 2 years ago.)

Tonight Brad & I sat here remembering when Cathy & Gayle moved back up to Wisconsin almost 5 years ago. How sad we were when they moved away. How busy Cathy was packing to move home to her Beloved Wisconsin. How Excited she was to be going home. How we felt 'why does she seem to not care that she is leaving us'? 'Why does she want to get away so badly?' And after they moved how odd it seemed that she didn't call everyday. How she seemed to distance herself from all of us. Brad & I called her instead, we traveled up to Wisconsin numerous times & invited ourselves up as much as we could. But we were sad & feeling that she didn't miss us as much as we thought she would. She seemed to have distanced herself from all 3 of her boys... which was not at all Cathy's normal behavior. Looking back... we can see that it was probably related to the FTD. We wonder if she knew that something was wrong with her?

Sometimes I wonder if she ever had those moments that you see in the movies... getting lost driving home, going to the grocery store and not remembering where things were, forgetting important dates & names, etc... I wonder if she was scared & didn't tell us.

We also thought about how Excited Cathy would have been that we are moving up North. And how Excited she would have been that Ryan & his family are up there as well! She always wanted to be back up North with her family!!! And we thought about how she would have driven right down & started packing us up. She was always busy & a fast mover!! She would have had us packed & organized lickity split!

We can't wait to go tell her we are moving to Wisconsin... but will she really be able to feel the emotion of excitement anymore? Will she just stare & look back at her TV? Will she smile & give us a big hug? I hope that even the slightest bit of her is able to recognize that. Her boys are up North with her. That she is Home.

No comments: