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, October 10, 2007

Restless

I have been waiting until Cathy is in bed to write in my journal. I don't want her to walk past and see that I am writing about her. She always glances at what you are doing. The last thing I want to do is hurt her or upset her. She has been in & out of her bedroom at least 10 times since she went to bed tonight. Everytime she peaks out and looks at me, smiles, sometimes laughs, heads to the bathroom, and then heads straight to the bedroom again. I asked her if she is okay. I asked her if she hurts anywhere. And she says ok, fine, & smiles. But I think we will call the clinic tomorrow, just to make sure nothing is wrong.

I left her home alone for a few hours tonight. I must admit... I could have talked her into going with me... but I knew it would be easier to go alone. So I took the easy way out & let her stay here. The whole time I was gone I worried. By the time I was heading home I was almost sick to my stomach. Mad at myself for going & leaving her alone. The "What if's" were driving me crazy. I truly feel she is okay alone for an hour. But I am nervous about her eating when we are gone... choking hazard. I am nervous about her getting into trouble... like a toddler would if you left them home alone.

I also started our pellet burner today (it is in the low 50's here in Iowa)... she hasn't had any interest in it all day. But, "what if?" Last winter she burned her hand on the fireplace door. She called and told me about it a day later. I told her how to take care of it over the phone & then called and told Gayle about it. He was out of town for work & had a friend take a look at it. Cathy grew up around fires, campfires, & fireplaces... it isn't normal for her to not be careful. But she just grabbed something hot without thinking. She does that in the kitchen now also. She will touch the side of the pan, reach into the oven without a hotpad, or lift the kettle lid without a hot pad... Luckily, at this point, she doesn't seem to attempt to cook if you are not home. Tonight she tried to make a pizza while my Dad & the kids were here. She had the timer set correct, but she had our toaster oven set on broil. (Thanks for helping tonight Dad!)

Note to self: I will not leave her alone that long again, especially after dark!

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