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)

Friday, April 10, 2009

Struggling...

To be honest... I truly felt like throughout Cathy's illness we were preparing ourselves for the inevitable. That we were able to grieve 'ahead of time' knowing what was ahead for her & us. But I was so wrong, at least for me. I have my good days & bad days. And lately, with her Birthday coming up on the 17th I seem to be struggling. The reality of it all is finally hitting me... all of the emotions of the past few years coming to a halt with a sad ending. I became so much closer to her while helping care for her, that it made it even harder to let go in the end.

It is hard to let go... hard to move on without the guilt of moving on without her.

1 comment:

Kimberly said...

Thinking of you!