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, August 8, 2007

Words - Part 2

Location: Wisconsin
A few nights ago we were woke up by the phone ringing. (Everyone knows that is not a good sign) Gayle & Cathy's friends newer truck was on fire in their yard! Gary was at Sturgis (for all you non-harley fans... it is the king of Harley Davidson Rally's in South Dakota) & his wife Barb was calling hysterical... obviously. Gayle & Brad headed down there quickly while Cathy & I sat up waiting to hear some news. The guys called back & said everything was ok, the fire dept. had gone & they were going to stay with Barb for a few minutes while she calmed down. I unsuccessfully tried calming Cathy down. She paced from her room, to the front porch, to sitting on the edge of the couch looking out the window... over & over again. Finally the guys returned and she headed back to bed with Gayle.

But... the next day... it was a new word. "On Fire" She was still saying "actually" but now was also adding "on fire!" Some sentences would just be, "actually, on fire." She would say this over and over again.

Late Entry: I forgot to tell my sis-in-law about this new set of words. After visiting them up in North Dakota we talked about her visit there. Tracy was concerned about where the "on fire" came from. Cathy had said it when their baby was crying and at other random times. Once she knew the story she understood. She also called me on my Birthday (which in itself was amazing, she does not call as often anymore, nor does she answer her phone) and talked to me for a short while. She ended the conversation with, "your on fire", and hung up. I knew she didn't mean that I was on fire... but it was an uncomfortable way to end the call.

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