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, October 2, 2007

Talking

What's amazing to me is that Cathy can hear everything you say... when you are not talking to her. There has been many times that we were talking in one room and she has answered or commented on what we are talking about. But when you are talking directly too her she either repeats what you say or says one of her "words".

How is it that she can do that?? For example. This past weekend in Wisconsin Rhonda & I were talking in the dining room about something (I can't remember exactly what... if you know me, you know I remember how something makes me "feel" and not exactly what was said... not always a good trait) & Cathy was in her bedroom. All of the sudden she walked into the living room and said something related to what we were talking about. Amazing!

The downfall to this is that if we are trying to discuss her illness we have to be careful what we say. And even if we think we are being careful... sometimes she hears us. I feel bad for all the times that she has overheard us. We try to be careful. But I didn't realize how sharp her ears were until this summer. UFFDA! (Norwegian "naughty" word)

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