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, November 24, 2008

Annual Hunting/Turkey Day Week

Well... the Annual Family Deer Hunting/Turkey Day week has begun! Cathy's house is filled with the sound of kids laughing (sometimes crying), dogs barking, snack munching, cards playing, men joking, etc... Only one thing is missing this year... Cathy!!

It is such a strange feeling... sitting here in the house this week... knowing she is sitting in the nursing home down the road. Feeling guilty enjoying the time with family & friends, but mostly sadness that she is not here with us.

Brad went along with Toby on Saturday to see their Mom. Toby was prepared for the changes... I can't speak for him... but when we asked how it went he said he noticed how much weaker she was. He feels like she knew it was him, she brought him the build a bear he made her & squeezed it's hand.

We will all take turns visiting her this week. Lots of family & friends are in town from North Dakota, Iowa, Georgia, & Utah!

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