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)

Saturday, November 3, 2007

But the fire is so delightful... (usually)

Tonight Cathy started a fire in the fireplace. Unfortunately... the vent wasn't open... which I didn't realize until too late. I was watching her start the fire (to prevent injury since last winter she burnt her hand) yet trying to still give her some independence, but I didn't check the fireplace first. Smoke started rolling out of the fireplace and she didn't know what to do & couldn't find the lever to open the vent so she just walked away from the fireplace with no look of concern on her face! Gayle & Chase were down bow hunting by the river so I called Brad & then Gary to find out where the lever was... I was looking on the side & Gary told me it was on the top. It was hidden behind the firescreen chain. (sorry, I don't know technical fireplace terms...) By the time I got it open the house was full of smoke & my eyes were burning. I had sent Mia outside & told Cathy to open all the windows & doors. Funny thing... the smoke alarm didn't go off! (I have experience with this, they usually go off for me)

It is hard to watch her struggle with things like this... things that used to be such a normal part of her life.

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